I know it seems that when you have fibromyalgia and or are suffering with the worst anxiety and depression and even just getting out of bed to go to the loo seems almost impossible it can be hard to imagine ever being well again but there is always hope. It is my opinion based on my own heath that although this cluster of syndrome's, disease, condition, disability, whatever you wish to call it, does come with remission phases and I also believe that many of the down turns are link to external factors. The big one being stress, closely followed by grief, over exertion, intolerance to certain foods and a lack of vitamins or minerals. All of these factors we have some control over and therefore we have 'some' control over our daily health.
A few short months ago I was housebound almost all of the time. If I did go out it was with sticks and or my wheelchair. The first thing you have to do to begin your recovery is accept your illness. Accept it is here to stay and that if you are going to have any life at all then you're going to have to work pretty darn and be prepared for it to take a loooonnnnng time. The more seriously you accept this the faster your recovery will be. You probably think I am a little bit mad right now...and your most likely right but it is a fact I am afraid. I remember last January after being stuck in the house for around 18 months my husband drove me to Meadowhall and hired me a wheelchair. I was furious and refused to go in it but he talked me round and do you know what? We had an amazing day. Usually as soon as I walked into a place like that the lights sent my head spinning, the panic would start thinking was I going to be ok or would I collapse in a heap (something I have done in Meadowhall more than once) and then the fatigue would hit shortly after arriving and we would have to go home without buying anything....so the wheelchair was starting to look beneficial. Within about 3 minutes I started to notice other people in wheelchairs with the same look of 'OMG' on their faces as me. They would catch my eye and we would smile at each other...it was like a little club. Of course we all think wheelchair users are somehow different to non users when they are exactly the same as anyone else and everybody is in the chair for different reasons. Some have temporary conditions like a broken leg or maybe they have had a joint replacement, some have illnesses which render them unable to walk long distances and some people have permanent disabilities through illness or maybe an accident but they are still people. I once spoke to a young chap who had had a bike accident and lost the use of his legs. This was around the time I was bying my first walking stick and I was moaning like a spoilt child that I didn't want my life to go this way. He said I was lucky I had a choice and I could choose to buy something that would help me get around or struggle. His choice had been a chair or a chair and it wasn't a gradual process it was an instant one day he could walk the next he couldn't. As he said his choose then was to make the best of what he did have. I also had a choice, to go out and use what ever adaptions I needed to get me out or to stay at home and miss out on life. I had always been an outgoing, party sort of girl and I have lost who I was because of this illness. The depression was getting worse because the anxiety was out of control and I was the only person who could change that. So I did.
That first trip to Meadowhall exactly 1 year ago this week was my first step back into life and I embraced it. Every thing I did from then on to help me stay somewhat independent built my confidence and as a result I ttok control of the anxiety and gradually the depression eased, but this wasn't all. Now the mental illness was lessoning the physical illness seemed more copable. Yes I still had pain, yes I was still dizzy all day long, yes I was still shattered at the slightest thing but I was learning how to enjoy life again and it felt good. I used the chair for a while but just for days out, shopping or when I felt really tired and pained. The rest of the time I started to rehabilitate myself. I took a multi vitamin with minerals in every day. I was already on magnesium which eased the stiffness but within two weeks of the multi vit I noticed improvements. I went on a complete, self made detox by cutting out processed foods, dairy and wheat, just for 10 days. I had salads, fruit smoothies and home made soups and I started to exercise. I did not go down the gym and work out for an hour a day, I started by walking down my 12ft driveway and to next doors drive way twice a day and built up over a few days to walking half way down the street. At first I was exhausted but after a few days it became easier. I told myself the pain was all in my head and I pushed through it. Not hard, not to the extent of causing more pain, just enough to do simple tasks. At first stripping a bed was exhausting but after a while of my new regime I could strip, wash and remake a bed in a day. This was a huge achievement for me. It took a few weeks to get to this point and I had a few set backs but I was working forwards all of the time because my mindset was so positive and I was determained I was going to make the best of my life, whatever my health restricted me too. (This may not be the right course of action for everyone so always check with your doctor before taking any suppliments or making any changes to your diet and or exercise regime).
I bought a deck of cards and as a family we learnt to play a few games, we also dragged out old board games and started to have fun. I can tell you when your in pain and your so tired that breathing wears you out, fun is something you forget to have but it is an important part of recovery. It distracts you from the pain and gives you endorphins. I also became more mindful and this is where things really started to change for me. I began to notice how I looked, how I stood, how I spoke to people, how I responded to a question and I changed my whole demeanour. I stopped focussing so much on the illness and how it affected me and started to focus on being happy. Most people who have an illness like fibro or depression say they feel they have lost themselves somewhere along the way. You have to fight to be heard with an invisable illness and you start to feel you need to show it on the outside in order for people to notice your ill. I asked myself why? Why do I need people to see the pain I am in? Why do I want them to know how crappy my life is? Do I spend my day thinking about whether or not someone else is in pain? Do I have to assume my life is worse than theirs just because they don't 'look' like anything is wrong? No I don't. One lady said to me one day 'You don't look like you have depression. You're always dressed nicely and you do your make up" I was a little taken aback I must say. Why would putting lip-gloss and mascara on mean I wasn't depressed? Why should I let the outside of me reflect the inside? I didn't actually want that to happen so I decided to make the inside look as good as the outside...which to people who knew me I did look pretty shitty but if people thought I looked nice then that was fabulous! So I made a point of putting my lip-gloss and mascara on every day and I would choose nice clothes. Nothing flash but nice. I didn't look like me when I looked in the mirror but as time went on I started to see glimpses of the old me and I knew I could come back.
My mindfulness stretched to every part of my life. When I woke up in the morning I would challenge my thoughts. I always had weird dark dreams which left me feeling low and scared in a morning so I started reciting mantra's to make those thoughts more positive. I thought, at first, the changes I was making were small and insignificant ones but actually they were making a huge difference to my life. When I flared up I watched a film, or wrote a poem or diary or page of my book instead of beating myself up mentally about the things I couldn't do or should have been doing. I laughed with my husband and the children about anything. At first it was an effort but soon it became so natural. I watched films which had meaning to them, read books, even if it was one page a day. Then I started to sing again. I always loved singing, and with the singing came dancing around the kitchen. Now this may all sound ridiculous to those of you who have not been that low and to those who have it sounds impossible but it isn't. It's all about tajing one day at a time and building up very very slowly. Don't compare yourself with others, don't compare yourself to how you used to be and stop setting yourself goals you find impossible to achieve. Start with the basics. Learning to laugh, talk, walk again. I still say the wrong words or stumble over my words when my brain isn't functioning as it should but I don't care. I still flare. I still need to lie down every day fpr an hour or two and I am still exhausted when I go to bed. I still have anxiety when going out and I still suffer with vertigo bouts and daily dizzy spells but they don't rule me anymore and I am getting periods of time without any of these things now...it may be a day here and there but I am getting a few days on the trot from time to time and so the bad days don't seem as bad because I am having a few better days.
It is a year on from that first outing and I am still finding my way. It is a daily thing to work on your mental and physical health to keep yourself strong and upbeat and someday I fall flat on my face but I get back up, I put one foot in front of the other, no matter how hard or how painful and I am living again. I find that my worst flare up's are shorter lived and although I still have pain every day I am sure it is a heck of a lot less than it used to be. I know my body now. I know when I am going downwards and need to rest. I know that if I don't do some sort of exercise every day I will slide back. I know if I eat rubbish for a few days I will suffer for it but I also know how and when to take more care of myself.
Last week I bought myself an activity band. I had built up to going on the exercise bike a few times a week for no more than 15 minutes at a time but usually 10.30seconds (I don't know why the half second but that's just how it is), and walking the dog every day I was able too. My goal was to always do 10,000 steps a day minimum and at the moment I am averaging around twice that. Some days, when I am particularly well, I can do 30,000 steps. Now that's huge for me and I really feel I am starting to look and feel more like the old me. I am shattered tho so I think I need to pull it back a little for a while but it is all going in the right direction. I am beginning to return to work very slowly and I am making plans for the future. I may always have to work part time from home and I know I will always have my health to contend with but fundamentally I am happier and more content than I have been in a very long time. I realised this when standing in the lambing barn with my husband on Sunday watching the snow fall and feeling the peace that comes from being in a barn of 90 very pregnant sheep late at night. There was no feeling like it and I knew that this is what life is all about. It's about being happy with your lot and making the best of it. Not always wanting more. There is nothing wrong with bettering yourself and having goals to achieve, this is what drives us as a species but finding that inner peace and leaning to enjoy what we have right here, right now is the only way to truly move forward.
Today has been a little like our June weather for me emotionally. A little grey, windy and rainy this morning, followed by glorious sunshine in the afternoon. How our emotions can change when we have an illness that affects our daily lives so.
Firstly I did not have a good nights sleep last night. I had pain in my hips. legs and feet which made getting comfy hard work. Then just as I was dropping off someone mistakenly posted some cheques through our door, clattering the letter box really loudly and waking the whole house up. I wouldn't mind but it was almost 11pm and we were all shattered. After that sleep just wasn't going to happen. I had had a doze and now I was wide awake. I took my pillows and duvet downstairs and settled on the sofa to watch T.V I am well used to this...the sofa is like a second bed to me. t must have been about 3am before I felt I could get back up to bed and sleep but I was wide awake again by 5 and the pain had not lessoned for the rest.
My eldest boy came with me to take the little ones to school and walk the dog. needless to say I didn't get to walk very far at all but I was out. I spent some time under my favourite tree while Ben ran up and down the lane with the dog trying to wear her out. Then we visited my in laws for half an hour and by this time I was so uncomfortable. My head was pounding, my breathing shallow because of the pain and as a result I felt light headed and foggy. My heart started beating in double time and I felt generally shocking. I thought maybe some of it may have been because I had started a detox 3 days prior and I had cut out dairy, gluten and processed foods. I do this quite a lot to clear my system and it doesn't usually make me feel so ill. I don't drink caffeine more than once a week anyway and always keep dairy and processed food to a minimum so there isn't usually a noticeable clearance as such I just feel much better for doing it afterwards. I guess my headaches to be attributed to two things. The Rape seed is out in force in the fields around our village and I have had some stress on of late with family things. My anxiety had been bad for a couple of weeks, hence why I had decided to do the detox in the first place.
I drove home and decided maybe some wholemeal toast and a nice cup of decaf tea would be a good idea...maybe my blood sugars were low or something. It did help but I was only home for 15 minutes before I was due to go for my Pain Clinic appointment. I parked up and made my way across the car park because all of the disabled bays were taken up. I was using two sticks and felt so lousy I just wanted to lie down. Ben came with me for support and I must say I really appreciated that. As soon as I got in that little room and saw Linda it all came out. Tears, my frustrations, self pity - the lot. It was like someone had opened a flood gate and let all my emotions and feelings flow out at top speed. Linda was great and sat patiently listening to me whinge and moan about not having a life and how sorry I was that my boys had to see me like this or that they had to do chores at home, how I couldn't work at the moment, how I felt my life was one big waste of space but how lucky I was to have an amazing family and a beautiful home and I should have been content with that. I told her I can cope with the pain but it's feeling sooooo darn ill all the time that gets me down. Don't get me wrong pain when it is constant is wearing on the best of us but it isn't a patch on feeling dizzy, exhausted, weak, sick, anxious, useless, exhausted, dizzy, sick...did I mention exhausted, dizzy and sick?
Linda very nicely reminded me I WAS HUMAN. That this time last year I couldn't leave the house at all or even get out of bed for days at a time and so even though I felt rough and emotional in actual fact I was progressing. It may be slowly but it is progress. She gave me some exercises to help my dizziness and vertigo (They are different) and told me I had to retrain my brain. She showed me a video explaining that sometimes the brain learns to be in pain physically to hide emotional pain or if the body has gone through trauma or long period of high intensity pain it learns to protect itself from further pain but actually creating pain. Now I know anxiety does this. The brain creates anxiety when ever it see's a trigger or potential danger to prevent us from going forward and possibly hurting ourselves and so it would seem in fibromyalgia the brain and central nervous system have developed a strategy to create pain physically because it thinks it is saving us from other kinds of pain, for instance emotional pain. Now this part had me in floods of tears. I am aware I have had some traumatic times in my life that have probably contributed to my physical pain and although I feel I have dealt with most of them maybe it's just taking some time for my brain to cotton on?
Ben and I had a really good chat when we got home and we both let out a lot of feelings and emotions and it felt so good to share them with someone who understood. Although I have never wanted to talk things through with the boys because I have wanted to protect them and wanted them to be able to rely on me it actually did us both good. Hiding stuff from them doesn't mean it goes away or isn't happening. They know your hiding stuff and maybe they feel they have to hide it too which isn't good for anyone. We had a hug and I suddenly felt like a weight had been lifted. I knew how he felt about his diagnosis of psoriasis and how he felt about my illness and also his childhood. We could both clarify for the other how we really felt about situations of the past and present and we realised that each others prospective was different to our own and so more positive. Then we made a pact. A pact to be the best we could be and get these auto immune diseases into remission or at least reduce their effects. Bring on project smoothie. Now we et a lot of fruit, veg and salad in our house but smoothies are alien to us. I popped to Aldi and spent £15 on fruit and we literally threw it all in together. moral of the story, peel your fruit first! A smoothie is not very smooth at all if it has bits of grape skin floating about in it. Also not all fruits blend together as nicely as you think. There is an art form to it. What it did do tho was give us both a great laugh. We had turned the day from a 'struggle' day to a managing day.
I think a lot of how we cope day to day is we pretend stuff isn't happening. Lets face it when some one says "Hello how are you?" they don't really want to know, it's just a question. So our response is usually "Yes I'm great thanx are you?" etc. This is social etiquette and we wouldn't want to tell everyone we meet that actually today I am struggling and need a hug or a kind word. If we do we are usually met with annoying comments like "Oh you are doing too much" Gosh if only people knew how blinking annoying that saying is to someone with a chronic illness. What we need to learn to do is talk our feelings through with some one close to us, a councillor, doctor or the like and see it from another prospective. Sometimes even just writing it down and reading it back later helps us see that the bad times don't last for ever, even if we feel they do at the time and infact we are doing so much better than we think we are.
The smoothie test is going to be an ongoing thing. I don't believe in cutting out whole food groups from our diet, after all that isn't what makes it 'Balanced' but being sensible and sticking to a healthy low fat, low sugar diet does help both relieve symptoms of many illnesses and therefore promoting healing and it helps us cognitively too. We function better so we think better and our minds are clearer enabling us to think more positively. There is a saying that there is always someone worse off and it is so true. But sometimes you have to see your own pain as it is, relative to your own situation. To deal with that pain effectively in whatever way we can and release the emotion attached to it is the only way to move forward. As a friend once said to me everything is choice. You may not be able to change the situation but you can change how you react to it and therefore change the outcome. hence changing struggling to managing.
I have been asked so many times now about claiming benefits from my support group I thought I would blog my experience and share it with you all.
I have to say this is the hardest blog I have written or am likely to write due to my feelings on the nature of the subject. Ridiculous I know, but there is a definite stigma about claiming benefits which the vast majority of hardworking people just can't get over, even when they are face with a life long illness or disability. I know many people (including myself) who would do anything rather than claim a health benefit because of societies view on claimants and it is time this view was re-addressed and rebalanced.
Firstly, the social security system was put in place initially to help those who were unable to work or unable to find suitable work for whatever reason and support them. Up until the time social security benefits were announced families supported each other through spells of hardship. This was often the reason young children or the older generation were found working low paid, back breaking jobs. The scheme was funded by the payment of tax's and National Insurance payments but as with anything it doesn't always work out the way it was intended. No I am not going to sit here and write pages about my opinion of social security benefits and how the system is set up but I feel it is sufficient to say there are a lot of hard feelings towards the system for one reason or another. It does appear that 'some' people are awarded vast amounts of money for doing very little when they are more than capable of work and others they are awarded very little or nothing at all when in fact they are genuinely struggling to work or live on the income they have. What I do know is that there re 1000's of people who are entitled to benefits who don't claim them because of the stigma attached and would rather go without. I was one of these until around 12 months ago when we got to the point we had no choice.
The cost of living has increased so much over the last 15 years and many wages have been frozen. My husband is a teacher for example and his wages have been frozen for over 5 years now. We understand why the government did this but it does seem unfair that my husband trained for 5 years (and paid for his own training out of hard work and our lives savings) to gain a good job with a well paid salary only to be penalised almost as soon as he'd moved off the qualifying pay scale. We're not the only ones, there are thousands of public sector workers who are in the exact same situation. 7 years ago we could support a young family of 3 children on that one wage. It was tight but we were able to do it but this has become increasingly hard and in the last two years especially we have struggled to make ends meet because I have not been able to work more than a few hours a week due to my health.
I first applied for Disability living allowance 5 years ago when my then rheumatologist and GP suggested I gave up work and focused on getting better. After a 4 month wait I was told I did not qualify for DLA because on bad days I could wash my hands and face without help! I couldn't stand for more than a few minutes, or walk downstairs at the time but I could get on and off the loo with help and wash my hands and face with a cloth so I was entitled to nothing. I didn't bother appealing. I simply carried on struggling and eventually built up a little online business from home so that even on days when I was bed bound I had the chance of earning something because the products sold themselves via the website. As time went on and the business grew this became a little more difficult as I had to organise collections, couriers, paper work, field emails and phone calls at all hours of the day and night. Eventually as my condition worsened I became anxious that I could no longer cope with all the work of the business. I had tried employing help but this wasn't financially viable being a small business. After a few years I was faced with the choice of taking the business to the next level which would have cost thousands or folding it. I tried the former and as it put even more pressure on my health,anxiety and depression ensued and I was eventually fit for nothing. I was so poorly I would spend weeks in bed unable to look after myself let alone my family.
One day I had gone to the post office to send a letter which needed weighing and stood in line behind an Australian chap. I had my stick with me and I was wishing he would stop chatting and let me take my turn as my legs were buckling beneath me and my head was spinning. I felt hot, sick, faint and I hurt. After a few moments something he said caught my attention. he said he had come to England because his daughter had a genetic disease and the treatment for this was costing them thousands of dollars. But he had been told that if he moved to the U.K his daughter would be treated for free. He even went on to say that because his wife worked in the health sector she had found it easy to obtain a job here (Great news) but he didn't have to find work because he was actually paid by our government to stay home and care for their daughter. Please don't get me wrong. If my child was ill and needed help I would go to any length I needed to get support for her and I couldn't fault him for that but I was angered by the fact that here I was, unable to work having had to give my business up and having tried all my adult life to work despite having auto immune disease, struggling to stand in a 2 person que for 5 minutes listening to someone state they had been given benefits when they had never paid a penny into our social security system and were not even U.K resident. I was fuming.
When I got home I went straight onto the computer to look up the job centre and made an appointment. I was told I was probably not entitled to anything but to fill in the forms and have a go. (How patronising was that?) I made an appointment with the CAB (Citizens advice bureau) and asked them to help me fill out the forms. My head was a shed. I had gone from running a company with a £100,000 per year turnover to being in such a state physically and mentally I couldn't even fill a form in properly. The CAB were brilliant and put me in touch with a debt management company because of business debts and actually filled the benefit forms in for me. They took their time to explain everything to me and I finally felt I had some support. By this point in my illness I was so depressed I just wanted to be dead. I didn't want to kill myself but I wanted to be dead. I couldn't cope. I couldn't function mentally or physically, I had panic attacks all day (and night) long, life just didn't seem worth living. We had huge debts, my husband was working three jobs and we were about to loose the house and the only way out was either me working full time (not possible) or taking myself out of the equation and hoping my life insurance would dig Dom and my children out of the huge hole I felt I had single handidly dug. What's stopped me giving up? My family. My babies more precisely. Every day they told me they loved me and wanted me to get better. My husband was brilliant. It took a long time for him to realise what I was going through and he never pretended to understand but he supported me as did our immediate family and one very good friend Marianne...to whom I honestly believe I owe my life.
I thank God daily for these Earth Angels because there is no real support for Fibromyalgia or depression patients. Even when I had a 5 hour 'manic' breakdown there was no support outside of my family. No surprise then that so many people do take their own lives and I will never think anyone of them is selfish or a coward because until your in that place with no support or until your life is such a frightening place to be you would rather die, then you have no qualification or right to criticize.
A few weeks after sending off the forms I was awarded £72.40 a week Employment support allowance based on my NI contibutions. It may not have been loads but it was massive for us. It meant the difference between eating and not eating. We had used every penny we had coming in to keep the boys fed, clothed and warm and I was so ashamed I couldn't even tell them that the bank had taken all their savings as well as ours to pay part of our debts off.
I waited almost 11 months for my assessment dates. How we got through that time I will never be able to say. We had to borrow money from family to stop us from loosing the house. Something I would never have done before but we had no choice. MY ESA assessment came first and I was awarded a £35 a week rise back dated to the 14th week of my claim. This went a long way to covering the overdraft in my food account. Then 12 weeks later I was awarded a sum of PIP. This cleared off the overdraft in the food account and bills account and helped us put some of the boys money back. I stated to feel a little more in control and gradually over the last couple of months I have started to feel better mentally and I feel I can cope physically with the flare ups. I am able to rest daily which decreases the chronic fatigue and I feel a little more like me.
The trouble I have now is that I am actually ashamed to say I have health benefits because so many people view everyone on benefits as dole dodgers or loosers. I had a close friend complain I was on more ESA than her when she had been on benefits for years and I had a working husband. Excuse me love but we paid into the scheme and for me this is a short term plan to get me well and back on my feet so I can work again. Not a long term 'Oh lets see what else we can get off the tax payers'. It is true we live in a lovely 4 bed house on a newish estate, but we worked long and hard to save for this house and our mortgage is no more than rent on a 3 bed property so selling it makes no sence but if I had to then yes I would. There are people on this estate who have 6 children with 4 or 5 different parents between them, people who have no intention to work and yet they are given £150-250,000 houses and the funds to keep them and yet they have no intention of working. Why should they? They have a wonderful house, money in their pocket, the kids are all dressed in designer gear, they smoke and drink and live a life of riley.
Now don't get me wrong there are people on benefits who struggle to put food on the table or clothes on the back of their kids but that is my point. Surely there is a fairer scheme which can assess who is genuinely in need of social security help and who is just milking the system for all it is worth. I have people in my fibro support groups who can't work or seriously struggle to work because of their health but who have no other choice because the state won't or can't support them and the really annoying thing is these people don't want a life time of hand outs, they want a helping hand to get them back on their feet and support them while they do what they can to support themselves. I didn't vote for the Conservative Party but I sincerely hope they can turn our benefit system around. I am currently looking for work I can do from home. Because of the arthritis in my neck it means I can't spend hours on a laptop. Even writing a blog will take me all day because I have to keep having breaks and then I am in agony for hours or days but I am determined to do something. Even if it is just supporting others via my group and my blog because that is rewarding in itself and helps me to come to terms with my condition as well as offering that life line to others who feel like I felt. I have been told several times now I have saved someone's life just by being a person they can turn too and by writing about my own experiences. If I can help one person learn to love life again then I have achieved something and that means going through all of this has been worth it.
Claiming a health benefit is hard work, it can make you feel worthless. You feel like you have to look over your shoulder every minute of the day and if you tell anyone your on them their reactions are so varied you could almost write a book on just that. It is such a shame that disabled people or those with long term illnesses have to fight so hard for something they are entitled too and many of them carry on working as best they can. After all the money from a health benefit is usually taken up buying aids to help make life as normal as possible. When was the last time you looked at buying a wheelchair? They start at £250 for a bog standard no good to anyone who really needs one price and go up to an individually built superb £6000 price. If you can't work or need support to work then how else can you afford such an item which lets face it isn't a luxury but an essential item. I think the point is you have to do what is right for you. If you need to claim then make a claim. There is no shame in claiming a health benefit if you need it and the adaptions you can purchase are expensive. I have been able to pay off a few debts, get an electric wheelchair and a new walking stick because some days I need to use two at one time. I am now also looking into a motability car so I can have a hoist for my wheelchair, and a higher car so it is easier to get in and out of. The problem arises from motability cars just being normal cars but because of this amazing scheme you get a new car every three years which can be fitted with any adaptions you need to make your life more independent. Road tax, insurance, breakdown cover, servicing, MOT and even tyres are all included in the monthly payment and should your condition change, maybe meaning you need different adaptions, then there is the option of changing the car early. Surely that is better than worrying about stigma. I know my blue badge has been a boon for me and the amount I was awarded doesn't cover everything but it certainly takes the pressure off a bit so I can concentrate of looking after myself and being as well as I can be.
I haven't written much lately because...well to be perfectly honest...I have been sick to my back teeth of thinking of and talking about fibromyalgia, depression and anxiety.
On the plus side since my last blog the depression has lifted and I have found my happy place again. Probably because I realised that no matter how hard living with an illness is, no matter how much it hurts or how many things you struggle to do that were normal daily life sort of things before, no amount of brooding, worrying or fear of the future would improve the situation one iota. However taking one moment at a time, enjoying watching the butterflies playing, listening to laughter of my children, singing, loosing myself in a good book and realising just how bloody lucky I am to be here, now all of those things do improve the situation...massively. I realised I was consumed with how I felt and how much my life had changed. I got sick of hearing myself talk about my illness and expecting people to understand how I felt. It was like I needed to justify to people why I wasn't the person I used to be when in actual fact I have always been that person I just changed paths and got a little lost on my new journey. If people can't take me for who I am right now then that's their issue and not mine but actually it was more my own hang ups and expectations that caused me grief.
I have had acupuncture which was amazing for my mobility and pain but made the depression worse so I had to stop it. I have seen pain management nurses who tell me I am amazing at managing pain holistically and there is nothing more then can help with. Physio's who give me exercises for vertigo which actually make you worse before they make you better but because the vertigo I have comes from compromised blood flow to my brain due to the arthritis in my neck as well as an imbalance in fluid in my ear, (made worse when the fibro affects the bones in my ears) then they are limited to what they can offer me. However the support I have had from my local pain clinic and rehab department has been great and I am enjoying learning how to manage my condition instead of looking for a cure that lets face it doesn't exist. I got so sick of hearing "sorry there is nothing we can do" that I decided that there was one thing 'I' could do that no one else could do for me. I could be in charge of my thoughts and emotions and I could accept how things are and COPE. Deal with the conditions as a whole and not as 4 separate conditions then get frustrated when one condition was stable but another was flaring. I found my own inner happiness and started to live again. If I am ever going to be cured then that cure will come from inside but if not then the least I can do is enjoy life. I could be on this planet another 40,50,60 years. When I get up to St Peter I don't want the video of my life to be depressing. I want it to be full of happy memories, love, laughter, and fun.
I am not as afraid as I was. Yes it's scary when my legs go weak and I can't stand, or my arms are to weak to wash my face in the shower but I don't panic quite so much anymore because I know what it is. When the world spins so fast I fee like I am on a fairground ride I take my pills and go to bed. I know that some days it's a struggle just to breathe because my lungs, heart or chest muscles are affected but I also know if I rest eventually it will pass, one way or another. Of course this all means I have to stay near home and usually need someone who can get me home with me if I go out but I am slowly building my strength mentally, emotionally and physically which means I am better equipped to deal with crashes, I can recognise the signs of them coming on even if it's just a few moments and I manage my days better so I don't get over tired. Not that anyone believes me. All I hear is "Slow down your doing too much" usually from well meaning people I don't see from one month to the next who have no idea at all about my daily routines but I do balance my life as far as I can. I rest in between jobs and activities. I plan as far as I can so I can rest and if I have a few busy days I plan to have a few quiet days and it helps immensely. I don't go out if I feel weak or out of sorts, I just find another day to go. I exercise in some way every day. Be it just clenching muscles while I am in bed, using my stepper, walking the dog or a full gym session. It doesn't stop the flare ups but it makes them more manageable and I'm starting to have a few days here and there with reduced or little pain and when the pain is excruciating I feel I cope better with it because it doesn't make me sad anymore.I have many things to be thankful for everyday. You can always find something to be thankful for and you can always laugh even when your crying with pain. This week I have had just 3 dizzy spells in over a week and 3 whole days of very little pain. That's massive for me. I am enjoying life. No I am Loving life and it feels good.
An old friend from school was diagnosed with fibro a while back and joined my facebook support group (fibromyalgia supporting each other). She is currently having tests for MS (something I have been tested for many times), terrifying time but she is outstanding. She told me that feeling pain meant she felt alive. Her crash days were a reminder of how good life can really be on the good days and that she wanted to experience every moment of life good and bad because none of us know how long we are going to be here or what will happen in the next second and she reminded me of just who I used to be. The person I seemed to have lost for a while and so I went inside and I found that girl again and I brought her back with me. The girl who fought against a life threatening kidney condition aged 15-20 and is still surviving 24 years after diagnosis. The girl who always went for what she wanted. The girl who lived 3 lives in one just to ensure she fitted everything in because there are so many opportunities in life and she didn't want to miss out. And here I am. The depression is gone. I have no idea if it will return but I feel more equipped to deal with it should it raise it's ugly head again. I no longer have 7 debilitating panic attacks a day...I maybe have a few days a month where I feel a little heightened anxiety but I see it for what it is and I deal with it. I am starting to push my boundaries a little.
I hired a wheel chair for 6 weeks and realised I could go shopping again and have days out with the family. I can't tell you how good that feels and it's something I haven't been able to do for the best part of 2 years but it wasn't ideal as I like to be independent and being pushed by members of your family is not a bit like independence. They ram you into peoples ankles, trap your fingers in door frames, leave go of you on hills without using the break, tip you out over curbs and leave you sitting facing the wrong way while they talk to people over your head. It's hysterical really and we had some brilliant laughs but I needed a self propelling wheelchair...when I have the strength to actually move it....but they cost between £2,500 and £5,000 so that's currently out of the question. The PIP I was awarded is currently going towards paying off the debts we built up trying to live on one wage with a big mortgage and three boys for almost 2 years but we will get there and I will get one but then my wonderful In-Laws gave me an electric scooter. It's 14 years old but never been used and it's fabulous. I may look like Madge from Benidorm but it will give me independence. I hear people say "Oh I wouldn't be seen dead in one of them" or "they take the mick, people who don't need such appliances seem to find it hysterical that I may need to use an 'Old persons' aid but I don't give a toss. Disability happens to people of all ages from birth to old age. It's taking what is available to you and using it in the best way possible to make your life easier and more enjoyable. I have come to understand that someone else's opinion means nowt when it conflicts with my own and I laugh it off now. Not in a way when I then go home and cry but in a way where I literally think "well that's great for you but I am going to make the most of my life and if that means using a wheelchair or a scooter then laugh away". I have driven to our next town a few times now. Only on really good days and armed with medications and mobile phone but I have done it. I also just booked us a holiday abroad for the summer. It's only a mini cruise for 5 days but it is a start and I had the confidence to do it. I will have to take a wheel chair and my sticks but I am going and I can't wait. The boys are excited because it's been 4 years since they went anywhere other than visiting family for a holiday.
I don't think you really know how strong you are until your strength is tested. You may feel like your sinking into a dark black hole of pain and despair but actually your just learning a new way to live. Were all so used to planning our lives and having rules and regulations it can be quite liberating to learn to fly just when you think you are falling. You suddenly realise that all the worry and anxiety in the world won't take the uncertainty away but by learning to smile to yourself when a good song comes on the radio or laugh at anything and everything you learn how to live in the moment and at the end of the day that's all any of us can do.
So that's where I am at the moment. I enjoy every day no matter how I am feeling physically. I laugh with Dom and the boys. I read, I have fun, I watch films, I wear at least mascara and lip gloss if not eyeliner and blusher daily. I feel content. I count myself as extremely lucky. There are some people out there who make a life out of being miserable, who always look for the negative. Well in my experience if you look for the negative you will always find it. If you look for the positives you will see them and soooooo much more besides.
Today I am exhausted. Physically. I find fatigue gets me in several ways. Mental, emotional, physical or sometimes all of the afore mentioned. It comes for no reason at all, can be delayed and related to a busy day or stressful time, or comes at the end of a busy or stressful period of time (Day,week etc).
Yesterday I had to take my son to the Orthodontist in Doncaster. Usually that wouldn't be a problem for most people but for me it is a bit of an ordeal. I worry about driving in case I get a dizzy spell or have a sudden flare up (both of which have happened several times and can be very frightening), however this last few months I have decided not to let anxiety of the 'what iff's' stop me living a normal as possible life and so I am facing my fears. In the morning I had walked the dog...not far but she was off the lead so I was out and she had a run. Then came home and did a bit of writing before going to collect Ben (now known as LB since we bought him a title for Christmas) and headed up to Donny. It was lunch time and Ben was starving. He asked for pizza hut and although I just wanted to get to his appointment and leave I went...because I can't let my issues rule all of our lives...It was actually really lovely. We had the buffet and I'm sure LB scoffed 10 slices of pizza as well as two plates of salad and a load of cuscus. It was lovely to treat him. Especially as he was going for impressions and photo's/xrays for a brace. He may not be able to eat pizza for a while and to be perfectly honest it was just amazing to be out and independent but I was a little tense I have to say. The meal and appointment went really well and we got home safely. I felt elated that I had done it and LB was really proud of me too. I collected the other boys from school shortly after we got back and noticed my neck was getting really sore. By tea time I was totally exhausted and my arms and legs were so weak I felt as though I had no control over them. I had a bath in sea salts and clary sage and tried to relax but in actual fact the only way you can deal with that sort of fatigue is to go to bed and rest. I often say when I am that fatigued I am too tired to sleep so I watch movies, turn my Reiki on and chill until I can be rested enough to sleep.
Eventually I did actually sleep quite well for about 6.5 hours which was great but today...although I am up and dressed (because I had to get the boys to school), I am so lethargic and my muscles are still so fatigued I can barely raise my arms. The mental tiredness doesn't seem to be as bad as usual tho so that's a plus point and I am anxious to a point (because it is such an unpleasant feeling) but not to the stomach churning, head spinning, body shaking levels it used to reduce me too. I am quite thrilled that I am coping at home on my own and feeling ok about it all. I guess you just learn to get used to it. It's horrid and debilitating and I will go and sleep for a few hours after writing this blog so I am able to collect the boys this afternoon but learning that this is a condition and comes hand in hand with fibromyalgia makes it easier to cope with I say easier we don't have a choice, you either learn to live with it or you don't but either way you live with it regardless!
At the end of last year I set up a fibromyalgia face book group called fibromyalgia-supporting each other. We now have 70 members and it's been such a God send for me...and I am sure many of the group members too...simply because I can now talk about how I feel openly, with people who understand and discuss my fears and anxieties. I have clarification that I am not the only one who goes through this and that removes some of the fear. I have made new friends and I no longer feel lonely which has reduced the depression side of it immensley. It's still frustrating and I have to push myself most days to do things and remind myself to do fun things for me and my family or to stay on touch with friends but it is hard. I was supposed to see a friend today and we were both really looking forward to it but I just couldn't make it. I feel awful about letting her down. I know she understands...not least because she suffers too, but for me that's more reason to go. She needs me as much as I need her but today we will have to make do with the internet because neither one of us is able to drive or has the energy to spend time in company. My friends who don't have fibro have full time jobs so I don't get to see any of them as much as I would like to but with the joy of modern age we text, message and Skype so at least I have contact with the outside world.
I felt for a long time that it was lazy having days like these, especially when you get several of them together. Having a family to look after, a house to run, a job (although very part time) as well as all the things I want to do it's not surprising I sometimes suffer with depression. However I am viewing the whole thing much more positively these days. I love to write and days like these give me the perfect opportunity to write or think of ideas for stories, blogs etc. The weather is dreadful today. It's raining so hard and it's dark and grey so I have the perfect excuse to stay in doors and watch T.V, crochet and write. I no longer feel guilty about not being as 'able' as I used to be or even as able as the people around me because I'm not who I used to be. In many ways I am vastly improved because I take nothing for granted anymore. . I'm not like my neighbours or friends. I accept I can't do a full time job at the moment but that's not a failure on my part. This is a serious and debilitating condition and actually I do a heck of a lot of things under the circumstances. Today I have less spoons because yesterday I used more than my allocated 12 so instead of feeling spry for myself I am finding activities that take less spoons and I am eated that I managed to drive to Doncaster, have lunch with my son and do a very normal thing...take him to an appointment. If that means I am shattered today then there is always tomorrow and if I rest and am sensible then tomorrow or the day after I should feel so much better because I will have my full allocation of spoons back :) Infact tomorrow I am off for a lovely back massage because it relaxes me mentally as well as physically and after a good massage I usually feel better as a whole. Its all about learning to get a balance. Not focusing on what you can't do or what you used to be able to do but being appreciative of what you can do, when you can do them.
It is difficult for family and friends to understand. As I've said so many times before I have some amazing friends and really supportive family but it's taken a while for all of us to come to the point we are at now. I know many of my group say their friends and family don't understand and don't support them or think it's all in their heads but part of me wonders if their support circle really does think like this or if some of that comes from what they feel psychologically about the condition. If you don't understand something yourself fully or you feel guilty for having a condition then you can be guilty of projecting your feelings and fears on to those around you. I know I have don't this and I see it daily with others in the group. Communication needs to be the top priority in any relationship. There is a difference in telling someone exactly how you feel and explaining how scary and complicated it is or that you don't understand it fully yourself and therefore can't explain it to those around you but that you still need their support. I know I am a talker and always thought I explained how I felt and what I went through but I have been told by those around me...including my husband...that until they read my blog they didn't really get it. Some people see talking about their health, feelings and emotions as moaning or being negative but actually the negativity comes from how you word things or the guilt you attach onto speaking about it. Being honest and factual is the best way to get those around you to understand you. My husband is an absolute brick and I couldn't get through any of this without him but it hasn't always been like that. He has had to learn as much as I have and sometimes I feel he understands and accepts more than I do now. Fibromyalgia, chronic fatigue, IBS, cluster headaches/migraine, arthritis, MS, ME etc are all out in the media more now because of the internet and social media's so there shouldn't be a stigma anymore but their is. Hopefully in time this will be abolished. I know employers are more understanding of these conditions now and I am amazed at how many people I know have the condition's but don't want to talk about it or feel they can't. That in itself is exhausting
but we shouldn't have to hide away. True strength comes from accepting who you are right now. Not who you were, who you want to be or who others expect you to be but how YOU are right now, this very second. Embrace that and the world suddenly becomes a much brighter and more positive place to be. There's always tomorrow
I have had such a tough few days. My word, what can I say? I have suffered with vertigo many times before and in many different forms but Sunday really did take the biscuit! I haven't had it like that for about 12 years and I NEVER want to experience it again!
I have been having dizzy spells for weeks, months really but they came and went. Some lasted a few hours, some only moments but everyone of them started some sort of anxiety off because it is such a debilitating feeling to have vertigo, then in time I developed a generalised anxiety disorder because I worried constantly about being dizzy or ill and that in turn gave me anxiety related vertigo...vicious circle! I can be fine one moment and turn my head only to start spinning. Like the day we went to Cadbury World and I spent the whole time in the first aid room with a lovely security guard, clinging on to the side of the couch and throwing up while my family went round the factory eating delish chocolate and seeing the wonderful sights...I never did get to see it since either! Sometimes it passes quickly, a few moments or an hour or so. Other times it lasts several hours to a few days but it does usually ease when I lie down for a while. Not this time tho.
I had felt unwell since the weekend before with migraine headaches and a few dizzy spells. For several weeks I had noticed little stars in front of my eyes (you know the ones you usually get when you stand up to fast or bend over too far), but I was getting them even when I was lying down. Not many but enough to notice. I was always unbalanced when walking in dimmed light or darkness so I don't go out anymore after 4.30. It all worried me but I have low Blood pressure anyway and with a recent sickness bug, fibro flare ups and anxiety I put it all down to feeling out of sorts generally. On Thursday my client commented I wasn't my usual self and I really wasn't but I carried on as normal. My fibro was acting up and I had been using my sticks for a few days and the headache was never ending. Friday was worse, I somehow managed to teach my little swimming group from a sitting position by the pool side. It was painful and difficult but it felt great to be there doing it because I get so much from teaching the kiddies to swim and they seem to enjoy me being there. I had a Hypnotherapy client on Friday afternoon and we had a really brilliant session. My client left with such a smile on her face it made the whole session so worth while. But once I had my boys in from school I just wanted to lie down and relax...so I did just that! We watched films and snuggled and they had a few treats, it was lovely.
Saturday morning I felt a little better. It was a lovely morning so I went to the farm with Dom and we had a glorious morning together until about 11am when I suddenly went really dizzy and felt I couldn't catch my breath. By 12.30pm I was at home in bed feeling sorry for myself with a migraine. Our middle son had a gala that afternoon and I so wanted to go and watch him but the headache was getting worse, I felt sick and I was really unbalanced on my feet. I thought If I lay down for an hour or two I would be able to pop up and see him swim after warm up but it was actually the second session at 5pm before I felt well enough to go and watch. I felt so rough but it was great to see him getting PB's in all of his races bar one. He has been poorly with a water infection and hadn't done any training last week so he did amazingly well to be knocking 2-7 seconds off his times. Saturday night was an early one for me and I slept quite well. Sunday morning wasn't any better. In fact it was far worse. I woke up around 5.30am feeling extremely dizzy before I had even opened my eyes. It was like a flash back to 1998 when I had a particularly heavy night with the girls and drank 7 pints of cider and cherry B then hit the shots, except this time I had not been drinking at all. Everything spun so I naturally thought If I lay still it would all wear off...no such luck.
By 7am I was bursting for the loo so I tried to make my way across the landing. I think I actually just bounced off the wall and the stair rail all the way to the bathroom. The floor was moving like a roller coaster, the walls were closing in, I couldn't see more than a couple of inches in front of my own face and I felt physically sick. Boy did I feel sick! My co-ordination was gone. I felt like I couldn't function. I tried to clean my teeth but the whole motion and movement made me worse. My head spun, my heart pounded, my stomach heaved, my arms and legs didn't feel connected to the rest of me it was horrendous and so very scary. I made my way gingerly back to the bedroom to wake my husband. I don't know what I wanted him to do but I woke him anyway. Of course his reaction was to stand and look at me with a concerned expression while I heaved and cried which just made me more anxious....I'm not a good patient because I have no patience. Now my husband is brilliant for practical support but the emotional stuff isn't always his strong point bless him and giving me comfort in my time of need is not his forte in life. He prefers to be manly and take charge of the household running which is brilliant but sometimes I just need a hug, some comfort, to be told I am ok and reassured. I don't feel safe in those instances because I know no matter how poorly I am he would never think to call a doctor and that frightens me. There have been many instances in the past when he has left me at home really ill and gone to Uni or work and I have been terrified of being on my own because I haven't been able to get a drink or to the loo or to make food. Now don't get me wrong he is not a heartless man. Far from it but my husband doesn't really know how to do the caring stuff (although he is learning and is better), and he feels if he sorts the boys, goes to work and earns money to look after us all then that is his job. I'm probably not explaining this well at all. He is wonderful and kind and loving and I would not be without him but he doesn't understand what I go through (although again he is learning). he feels as if it is out of his control and so he does all the practical things to looks after the family because that's what he CAN do and he is good at that. Sometimes I just need a bit of reassurance and I don't feel I get that so I get anxious and it makes everything worse. On Sunday I did managed to grab the phone from my bedside cabinet and dial 111 because I knew I needed help. By this time my breathing was short and laboured, my chest felt like someone was sitting on it and I was reaching again. 111 were very nice and sent me a paramedic straight away. The ambulance service called me while we waited and chatted though my symptoms really making me feel calmer.
Dean was the fast responder on scene first and he was nothing short of fab. I wasn't wearing any jarmies...my house is warm...and I often sleep in my pants, (TMI i'm sure), he was very respectful when doing his checks. Dom helped me put my t.shirt top on and Dean ran some checks. BP (low), ECG, (champion), Blood sugars, (also champion). he wanted to give me some meds for the dizziness and as meds are my big phobia I freaked but he was great and found me a prochlorperazine buccal to pop in my mouth under my lip so I felt safer and more in control. Half an hour later when the crew arrived and I could just about manage to move my head he persuaded me to go in the ambulance to hospital to get some proper treatment. I have to say all the staff were brill. I felt so much better when the ambulance was moving and I chatted to Sarah the paramedic on board but as soon as it stopped at a junction or lights...blugh...that was a horrid feeling.
I spent hours in that hospital. The staff were great but rushed off their feet as usual. I had bloods taken and numerous tests then they gave me three lots of medication before I could even stand up to walk to the loo with my sticks. I was terrified because they check for all sorts of conditions like strokes, bleeds on the brain, etc but it all came down to the arthritis in my neck. The vertebrae were pinching the nerves and arteries which was restricting the blood flow to my brain and because I was worried about being dizzy and tensing up it was actually making the problem worse. My lips and face went numb. My arms and legs were numb, it was awful but eventually I was sent home with meds, physio and an apology for them not being able to do any more. This is a life long condition for which there is no cure but they did what they could to make me comfortable and gave advise on managing the symptoms. I was told if I got worse I could ring and that meant a lot because they were so busy and I felt I had wasted their time but I could not have managed at home in that state and I did think I had had a stroke at one point which is apparently normal given the symptoms and my paranoia.
I have realised I can look at this in two ways.
1) It will almost certainly happen again and my balance and vision may be compromised regularly or
2) It is something that can be reduced and managed to a degree with medication and physio, if I play ball and can help myself.
I think I'll take number 2 please. On top of everything else of late I could have done without it but I have been avoiding meds for over a year now and it hasn't really helped. I think I need to find a healthy balance of natural remedies, medication and physio. After all it is all there to help me and so I need to stop fighting this and help myself a little. Instead of seeing meds as a failure and something to be afraid of I need to see them as there to help me improve my quality of life. I'm great at self healing but rarely go to a healer for help myself so I changed that too and rang Peter Longthorn (A psychic healer friend of mine on Facebook), yesterday for a distant healing session. I also need to get in the habit of doing my physio several times day, even when I feel well or I am busy because if I don't do it, it won't work!
I have always been a busy and positive person....or thought I was but I am aware I put my own health last. If anyone needs advice I am straight there. I give healing out to friends, family, clients and complete strangers all day long every day, which is fine and I wouldn't have it any other way but I need to remember to have and healing for myself too. I either work 24/7 or I am ill and can't work at all! I have been really trying this year to get a better balance with some success so there is progress on that scope but I need to do much more. I have found today whilst giving myself a self hypnosis treatment that I am almost afraid of healing myself for fear there will be a consequence. I took myself right back to just before conception and looked at areas and times in my life where I had grey, sticky or negative energy and I realised that when trying to send healing to those parts of my life I struggled to accept it! Why? because I felt unworthy of full healing. I had taken all the negatives from my life and felt I had somehow deserved them and if I rectified the situation then something else would go wrong instead as a sort of punishment. Even writing his makes me feel I should delete it and not mention it but by hiding those feelings I am not doing myself any favours because it just compounds the problem.
What I have had to tell myself is that we are all part of the same wonderful Universe. We ALL deserve to be well and happy. That doesn't have to mean riches and material possessions, it means being happy with ME and my life as I have been handed it. Accepting the bad, making more of the good, as I do but also realising that the negative isn't aimed at me in a deliberate way it is just life! Many of us focus way too much on the bad things in life and the law of attraction states that this in turn brings us more of the same. I found that actually I could not forgive myself for being part of a negative situation no matter what it was or who's fault it was, even if it was no ones fault. I blamed my parents for things beyond their control in my childhood and I blamed me. Now none of this came to me consciously this was all in my subconscious and came to me as a bit of a surprise...but not a total surprise. I just carried on through these tough times and moved forward into the light, determined to make the future better but because I didn't learn the lessons I needed to learn from the patterns they kept re-occurring. Even with all my positive thinking I wasn't healing the energy and learning the lesson. I was just pushing on. On reflection of that self hypnosis session this afternoon I felt I deserved the negative sticky patches of energy somehow and if I healed them, they not would come round in another way. I am not sure if this is true or not but I know that I need to do something so I have age regressed myself and sent healing, forgiveness and positivity to ME throughout every stage of my life and also to all the people in it during those times. I'm not really sure how effective this will be but I do know it works wonders on my hypnotherapy clients and I know the healing works so why shouldn't I think it will work on me too? I need to see myself as important as the other people I treat, heal and advise and I need to realise that I am worthy of good health, in every sense of the word. I remember praying when I was 14 that I could take on my Dad's illness to free him from pain. A year later I became ill and have developed a similar illness to him but mine is benign. Is it chance? Is it defective genes? Did I somehow wish it on myself? I don't know but what I do know is no matter how much pain I experience I can not take my Dad's pain away from him and now there are two of us suffering. Perhaps I would have this anyway or perhaps the Quantum effect happened and I allowed my subconscious to take on an illness that was not mine. Perhaps a different approach would have been better. Had I known what I was doing when giving my Dad healing at that time I would have taken him deep inside of his own subconscious and rectified the negative energy, transmuting it and sending it away to be used as healing energy instead of thinking if I took the punishment for him it would make him better and I could bare the pain for him?
Peter's healing was wonderful. I could feel the heat from his hands, even though it was a telephone consultation and I accepted it. I'm great at giving the healing out but I'm not one for accepting it well, although I have been doing a lot of self healing these last few weeks and it helps me more than anything. He told me just where the pain and knots were in my neck and to massage them o transfer the heat from my hands to the areas of pain and tension. After a bout 1 minute I felt a click in my neck and it was a very mild but instant relief. The healing only lasted a few minutes but it was lovely and I felt so relaxed. A little while after I was well enough to have a shower and wash my hair and make a nice cup of tea. I spent a few hours on the sofa then slept really well. This is what I need more often. My clients all report similar experiences after a healing session with me but this time it is I who need the healing. I hate letting my clients down, especially my regulars but this week I have had to cancel all of my work because even typing this is hard going. The vertigo has gone down loads but I feel as weak as a kitten. My arms and legs feel like they don't belong to me. Just trying to move them is such and effort. It's quite frightening really. It's almost like my brains telling them to move but it is all in slow motion and I have little strength. Of course 'Logically' I have been tense for days with the vertigo and that in itself will have fatigued my muscles. I have lain down most othe day every day since Saturday (It is now Tuesday evening) and again I will have lost strength because of that. Plus I have had a nasty illness affecting every part of me and not forgetting I am on meds to block the dopamine in my brain so even though I am now on reduced meds I took a lot on Sunday and the effects of that are probably still in my system. The effects of the meds can slow your reactions to things so 'logically' I am not suffering anything unexpected, however If I allow myself to think about it I am terrified...so I am trying NOT to think about it and just relax. When I relax and rest I have a while of not feeling like this. It is only when I am doing stuff it happens so I must take my own advice and allow my body to heal. I will be calling Peter again soon for more healing and I would love to travel south to see him for Psychic surgery when I am well enough and can afford to go he has amazing results from his clients.
Today I have done two self healing sessions and my self hypnosis. I will do another healing session tonight and see what happens tomorrow. Although I feel anxious when I get up and move about because I feel so weak, I am not in full panic mode and when I am resting \I feel quite calm, which is brill because I really don't think I would have the strength for more anxiety or panic attacks on top of everything else.
Now I know that it is a problem with the blood flow to my head, surprisingly I feel a bit easier because I feel I have a little control back. I know I can help myself with exercises and it gives me a reason for all the symptoms I have been suffering since January on top of the fibro and it gives me a sense that the anxiety is for a reason. I don't like it and I don't want to think what might happen in years to come but I am actually already looking at a brighter future because armed with knowledge I can take preventative measures and understand the symptoms when they happen. I know I really need to start living in the moment more and put more faith in my bodies natural ability to heal itself. The body after all knows exactly what drugs need to be administered, when and how much, I just need to let it do it's job without interfering with negative thoughts or creating problems that are not there. My body also knows how to heal itself perfectly from any dis-ease...if I can let it. Stress and anxiety are responsible for 75% of health problems at least and the rest comes down to diet, environment, genes, etc. It is said that 1 in 25,000 people can spontaneously recover from terminal cancer with no signs that the disease ever existed and I am intrigued by this. I know the body breaks down and repairs itself constantly. Every 3 months we have a whole new skeleton. Every 4 months a new liver. Every 6 weeks a new skin. My kidneys repaired themselves from the damage caused by the IGA Nephropathy when I was a teenager because I relaxed and rested and allowed my body to heal and I took the medicines that the doctors gave me and trusted they would work...and they did! I actually gave healing to a lady who healed herself of terminal cancer. She ate well, took her medicines, went for healing regularly and above all else she believed in her Angels and in her own natural ability to heal. This follows a similar theory to Ayurvedic medicine and I am just starting to look into that along with Mindfulness and Deepack Chopra's theory n Quantum healing.
if nothing else these last few months have made me stop and think. I want to take control back of my life because I feel it has spiralled out of control away from me. It is time I made myself well and got back to living the life I truly want to live. I love my job and had I not been ill I would maybe not have gone back to working Holistically. I would ideally like to work full time with my healing, hypnotherapy and holistic therapy and even the psychic part of my work if my health permits. I would like to be financially stable and independent and If I can work more hours I can achieve that. To take the family on a holiday abroad or even to continue camping but be able to go for 2 or 3 weeks over the summer without running out of money, energy or developing pain and fatigue would be wonderful for us all and isn't too much to ask I don't think. I want to be able to take my family to Ypres to see my husbands Great Grandfathers resting place, view the war graves and experience the last post with 8,000 other people. We should have done this last week but couldn't because I was unwell and hadn't worked much for a while so finances didn't allow. All of these things I aim for but today is what I live for. If I can make today a well day. I can make tomorrow a well day when it arrives and build my future one block at a time. It's great to have goals to work towards but I need to focus on right now in order to achieve them. My aim tonight is to stay calm...already working on it...rest and get well, so that tomorrow is better. Then I can get back to work when I have taken adequate time to heal and make my plans as I go along. But first I need to accept that I am able to have good health. That I deserve good health or at least be the best I can be and I am the only person in a position to make the most of the life I have been handed because no one else can do it for me.
Today my long over due post is about making the most of things and doing things to make memories no matter how you are feeling. After confidently stating in my last blog I hadn't flared for a while I have had constant flare ups for 10 days or so...that will teach me lol but I have remained positive and productive as far as possible.
This last week has been half term week and we have had such a lovely week with the family. We have been to Rufford park, (One of our favourite places in the word), to do a Halloween hunt and have lunch. We also took part in making poppies out of clay and compost to add to the nationwide poppy display to commemorate the Great War. We visited my husbands brother and his wife for pizza night, which was great fun, and we went to the pictures. It's great being married to a teacher. It's hard during term times when we never see Dad because he is always working, but it is great come holiday times when he can join in the fun with the rest of us. Then on Saturday it would have been my Grandad's 90th Birthday ... which was a very sad occasion for all of us as we lost him just 9 weeks ago. But it was also my Nephews 9th Birthday as so we wanted to do something special to make the occasion. My nephew always spent time with his Great Grandad on their birthday and so this year was harder for him than any of us but we were determined to make new memories.
On Saturday morning my husband, the children and I climbed into the car and headed up the A1 to the North East, My home. It was such a weird feeling. We were all happy to go and see the family and yet sad that we would be celebrating Gramps's Birthday without his physical presence. The plan was to take some balloons (biodegradable - Environmentally less damaging balloons), to Little Haven. A place where my Grandparents often sat and ate their chips over looking the sea right from being teenagers. We met my parents at their home first and had a sandwich and much needed cuppa before we set off to the beach. I have to say the sea is the one thing I miss the most about living in the North East. I live in North Nottinghamshire, which is beautiful and I am settled here now but it is always a good feeling to know we are going home to the sea. The children were so excited to see their Grandparents. My youngest calls them Nan that lives far away or Grandad that lives far away because to a 6 year old it must seem like such a long journey to go and see them and for many years they have not been able to visit us at our home. We pilled into the two cars (Kids in my parents car), and travelled down to the front.
When we arrived it was great to see my sister and her little girl there waiting for us. My Nephew had gone to watch Newcastle play in the hope he would see his name in the programme and have a little mention but bless him it wasn't to be. My Aunt (Mam's sister), My cousins and their better halves and my gorgeous baby half cousin met us too. We all walked down to the pier and my Mam said a little speech. There were a few people milling around but do you know I don't think any of us really 'noticed' them. Typically two of the balloons had gone down and so we shared them, writing our messages of love for Grandad on the tags and setting them off from the Pier. It was such an emotional moment I could cry now thinking about it and until very recently it's not something I have been able to do. It seems so final to be celebrating someone's birthday without them doesn't it? It seems to have taken weeks for the fact that he has actually left us physically to sink in. I still hear his voice and feel him close to me...well I will do being a medium...but letting go of that balloon was as sad as watching the curtains close on the coffin at the funeral. You feel like someone has ripped out your heart and thrown it away. I am sat here with tears rolling down my cheeks just thinking about it. Many people are blessed with wonderful Grandparents but I can honestly say I was bless with 4 amazing Grandparents, whom I loved dearly and to say goodbye to the last one is like losing them all, all over again. I didn't think I was going to be able to stop crying, I sobbed so hard but it felt good to release some of that sorrow along with the balloon,
The next bit was going to the restaurant for lunch. How would I do that? We all had to be happy to see my nephew and wish him a happy birthday but I just didn't think I had a smile in me! Of course I did. As soon as my nephew walked in with his gorgeous beaming freckled face the room lit up. How could we feel sad. We still had so much to be grateful for and Gramps would have been so ashamed of us had we been sad on my nephews birthday. The drinks flowed, the food was amazing (18 cavalries Geordie style was no small operation). My little cousin made us all smile and laugh with his tiny stumbling steps and ability to single handedley tire us ALL out. How did I cope with three little ones??? When we wre all younger Gran and Grandad would have us all over for parties at their house and we all have such amazing memories. Each one of us has a different funny story to tell and we wanted to recreate that. The old generations were leaving us, for a while, and being replaced with new family members but they will never be forgotten. Far from it. They are still so much at the centre of our family and no matter where we are in the world we have each other. We will always be together in Spirit and we will always (God willing), have our memories.
My sister offered to have my younger two boys for a seep over. A) because it was her son's birthday and B) because it would make things easier and less cramped at my parents house. The boys were thrilled and didn't even look back when I dropped them and their suitcase off. It's weird tho when you have memories of your childhood and suddenly you are the parent watching your own babies making their memories of spending time with you and your siblings. I don't think the boys wanted to leave the next day. ben and my Dad are so close and the little ones had had such a fab time at their Aunts it seemed cruel to take them all away but we will be back again soon. It's hard when you live 135 miles from your family and you can't always get home to see them. Especially when they have busy lives and can't come to visit you either but I am pleased we make the effort, even if it is just 3 or 4 times a year because it means so much to see them and spend time with them. Loved ones are so very precious and it is only when they have left us that we truly appreciate what they have meant to us. I'm not saying I take my family for granted, far from it but I do think society these day's rates material things over family and friends far too often. Something I have always tried NOT to do.
Return to school on Monday was awful. I am actually one of those weird people who truly loves having her family at home...most of the time! Of course we all need personal space from time to time and I do need time to write and work but I will gladly sacrifice most things for a day with my babies and lovely hubby. After spending such an amazing week with Dom and the boys plus seeing the family, Monday morning was hard, packing everyone going back off to school was the last thing I wanted, but it happens and I know it won't be long before the Christmas break. It's not like I have anything to do with my time. I have been working on a few new scripts and I have had a few clients in for Reki, massage and Hypnotherapy. I have started a children's story but I haven't done anything on it this week because by Monday evening my middle son was really poorly and on Tuesday he was diagnosed with a nasty water infection. Bless him, he ended up being at home with me all week. I am not complaining, it's wonderful to spend time with him but I worry about them missing out on school work and I so hate it when they are ill. Luckily a few days of antibiotics and he seems much brighter so fingers crossed he will be well enough to go to school on Monday.
I had my first CBT session yesterday In Worksop and what a laugh that was. I sat and told the lady everything she was supposed to tell me. We discussed events in my life which lead to me feeling unsafe. Health issues. The correlation between mind and body health. The physical effects of Fibromyalgia and the anxiety and depression it brings with it. How I managed it, what strategies I had for making the most of my life and then she asked me how she could help because she said I knew everything she would be able to tell me! Ha I did laugh at that. I may know it but sometimes having help processing it and managing a condition are different. There is so little help out there sometimes for people. No wonder people feel alone, but I am hopeful that next weeks session is more productive and helpful and can help me get back to some sort of normality...although as she said, I seem to be managing that at the moment, it's just that my 'normal' has changed and is always changing. It's like being on a roller coaster of up and downs I have had to come to terms with that and learn how to make the most of both the up's and the downs.
Today I was in a lot of pain. It started before I even got out of bed this morning and seemed to just get worse. My legs hurt, my back hurt, my arms from my shoulders right down to my fingertips were stiff and painful. I couldn't walk Lola my dog and I did try but even with my walking stick going at a snails pace I had to turn and come home. But my lovely friend Trish and her youngest boy Ben (now all gorwed up and at Uni), came to see me to surprise me. They are a hoot together and I always feel so much better when I see them. Trish had made my gorgeous Giraffe (Gerald) and told me all about A4e (Access to work scheme), no one tells you about these things. She also explained about ESA and PIP assessments. Neither of these benefits are easy to obtain and I think it goes on the mood of the advisor at the time of your medical but it was good to gain some knowledge into help I may be entitled too. Going from a full time wage, to no wage was blinking hard and although I manage to work part time at the moment, It is sometimes really difficult to work at all and my mental and physical health always stand in the way at some point, even when I love the job. Hence why I have chosen to pick up my old skills, do some CPD's and get back to working a little from home. Not everyone has these choices tho and it frustrates me that people have to struggle with jobs and health and money. But don't get me started on that one because today's blog is a grateful one and focused on all the positives of my last two weeks.
I have also started a support group up on facebook called 'Fibromyalgia - supporting each other'. It was set up with the aim of bringing people together who suffer with fibro and or any of the symptoms and although it is still a little group at the moment it is growing and we have some lovely kind hearted members, all looking not only to help themselves but to support others through their days too. Already after literally 4 days people are making friends and supporting each other through the tough days, giving advice on medication, work, help available and life in general. It is heart wrenching to know so many others suffer from this disease as well as me but it is also so heart warming to know people genuinely want to make the most of their lives and help others improve and understand their own health. I didn't realise when I planned to set the group up just how much I would get from the group myself and I hope I give helpful advice back too. It has really helped me put my mind in gear and give myself that much needed kick up the backside I needed to continue with my blogs, finish my book and make a new future for myself and my family.
The one thing I had forgotten to do when I was really low was to laugh. You never really see how deep the hole is until you start to climb out. This last week I have found myself laughing at the boys, at jokes on the T.V or radio, really enjoying the company of friends and not just pretending too. I have felt more peaceful within and I am slowly coming to terms with my life not being exactly as I planned it would be, because it is a darn sight better than some peoples lives and I am truly blessed in so many ways. Seeing my Dad in the agonising pain he is in every day with his Osteoporosis and palindromic arthritis really hits home that I may have my bad spells, in what ever way I have them, but I am blessed to still get breaks in-between them.
I have agonising pain but not every day. Some days it is quite mild and I feel almost normal and on the very bad days I know that things will improve at some point, even if it's just for a while. I think after a full year of being depressed and anxious about my health I have come to realise that I have to make the most of everything. We all should really shouldn't we. None of us know what is going to happen in the future. My Grandparents were all lucky in that they lived long lives and had families who adored them. Yes they all had their hardships and troubles like the rest of us but I remember all of them had such brilliant senses of humours.
So these last two weeks have been great for me really. I have learned a lot and come a long way. Yes I have had more days of pain than not but I have found ways to deal with them. I have had days of high anxiety and even a couple of panic attacks but I have not felt depressed and I feel I have managed much better and I know I have improved hugely from even just a few weeks ago mentally. Unfortunately physically it has been harder these last few weeks than it has been for a while but I know that fibro comes in waves of flare ups and I accept that now and I know better times will come, I just have to be patient. The pain of fibro and arthritis may never leave me or I may spontaneously heal one day but what ever happens I have vowed to make the most of life. To write my books, to spend time with my loved ones, to focus on what I can do and not what I can't do and to appreciate every single moment of life. After all their is no point in moaning about being in Spain when you aimed for Italy because Spain is lovely too. It's just not Italy! It is so important to make fun days and spend time with loved ones doing things that will give you joy forever because these are what keep us strong on the bad days.
I am so pleased to report that it has been several weeks, maybe even a couple of months since I last had a flare up that has lasted anymore than 24 hours. That for anyone who suffers with fibromyalgia is a wonderful thing to report. I have had periods of chronic fatigue but not the excruciating pain.
This particular flare up started on Friday night. I remember sitting on my son's bed chatting, and all of a sudden I started to talk absolute gibberish. We were just chatting normally and I said something the wrong way round. I can't remember exactly what that was but something like "Have you nailed your cuts?" Now my family are all quite used to this sort of comment from
me....I often get fibro fog, but when I did it three times in 5 minutes I knew I either had a migraine coming...or a flare up! We laughed it off and I commented it was time I went to bed to try and ward what ever was coming off but unfortunately for me it was both. All part and parcel of the same flare up. As I mentioned in a previous blog, it started with my chest, it was hard to breathe on Saturday morning, and walking and talking made me feel very out of breath. Sometimes the fibro sits in the nerves leading to my lungs and can affect the lining around my heart so my breathing can get tight, leading to hyperventilation (because I shallow chest breathe) and that leads to the anxiety symptoms and dizziness.
By late morning I was feeling periodically dizzy, tired and weak but kept going to get my jobs done. I did everything slowly. my husband drove...but what I should have done was just go home and rest or better still to bed! I still would have had the flare up but I may have reduced it a little or at least I would have been comfy in bed but instead it hit in the middle of the shopping centre and it was hard getting back to the car because my legs wouldn't work, my vision went, I had the shakes, and I just wanted to lie down on the floor. Poor Dom had to half carry me back to the car but again this is normal for us, so we don't panic anymore. we just go home.
Anyone who has fibro knows how frustrating these days are. It's so easy for people who don't suffer to say "take it easy" "Slow down" (I could physically hit people when they say that), "Your doing too much" bla bla bla. What do they know. I wish they could have a week in my life so they could understand...well actually I don't because I wouldn't wish this on anyone.
How would you feel if doing to much was just getting out of bed and getting dressed? What if looking after your own children was so exhausting some days, you fell asleep while they watched a film or played around you or you had to have someone fetch them because you didn't feel they were safe in your care? What if the pain in your joints, muscles, tendons, bones, and even your eye balls was so intense you couldn't bare it and no matter how many pills you took the pain stayed the same but the pills gave you side effects like sickness, more fatigue, feeling spacey, all on top of what you already had? What if suddenly your brain got so mixed up you couldn't speak, your vision went or your hearing became so impaired you could hear people talking but couldn't process the words? If you couldn't life the hoover, or even a cup of tea. If you were so tired (when you had no reason to be) you slept for three days and nights. If this was all a regular occurrence for you, no matter what you did or didn't do, do you think peoples (well meaning) comments like "Slow down" would benefit you? No! Me neither.
Personally I am sick of slowing down. I go for months without working at all and when I do it's very part time, which means money is a constant worry. Daily chores are hard work even on good days so going out, stress, long days or God forbid an illness floors me and it can take weeks to get back on track. I have had this condition since I was 15 and the last 4 years it has been almost constant. The only break I get is a couple of weeks here and there and I can tell you those breaks are soooooo so very welcome. I pray for those times and I treasure them.
I look fine to those who don't really know me but some days I have to walk with sticks because I am so stiff or in so much pain. Occasionally I have only been able to go somewhere if I have hired a wheel chair to get around. I can't play active games with my three boys very often, unless I am in a remission phase and that's hard for any parent to handle. My boys are brilliant. They understand now they are older but why should they have too? My illness affects all of my family and it hurst me so much to see them upset and worried about me. The times my children have seen me carted off in an ambulance, or seen my husband have to carry me up to bed. the times we've had to cancel days out or cut them short. I am aware I sound angry and bitter. I am! I am angry I have this life changing condition and I am bitter that it takes such a lot away from not only me but my family too. My relationship with my husband is greatly affected and I thank my lucky stars every day that he is so understanding and stands by me no matter how tough things get because there are many who wouldn't but I sometimes feel he stays because he feels he has too. Not that he has ever said that or implied it but I wonder what kind of life he could have with someone healthier. I worry my boys miss out because we can't afford to take them on holidays abroad or do all the hobbies and activities they would like too and I hate that I can't buy them really nice clothes and shoes. There is no financial help for people with fibromyalgia because it isn't recognised as a disability!
In saying all of that I do accept I have this condition and I do make the most of my life in ways that I can. We have adapted as a family I try and work around the spoons theory as much as I can and I look after myself as well as I can which does make difference. I do still plan things because I live in eternal hope this will go away one day but I have to live my life and enjoy it so I refuse to give in.
This week I have been so tired and so sore I hadn't touched my house for a full week. No hovering, no dusting, no cleaning. Now I know for some of you this isn't a problem but for me it is major. I can't work a full time job and haven't done for a long time . My very part time job can be way too much sometimes and doing normal things like looking after my boys and keeping our home nice are big things for me and they are really important. Can you imagine an existence of living like this? Just take a few moments to really think about it. Your 2 year old child has fallen and hurt themselves. But your having a pain day and haven't got the physical strength to pick them up and hug them. So you slowly lower yourself, painfully to the floor and snuggle them in but the very fact they are touching your body, no matter how gently has tears of agony running down your face. Or another one. Your children are desperate to go horse riding, ice skating, or to play football. You go along too but have to side on the side lines and watch. However yesterday I managed to take my eldest and youngest shopping for 2 hours and when I came back my eldest helped me clean the house. He washed all the woodwork for me so I could hoover and clean the bathrooms and kitchen and it made such a difference. It has meant I could rest last night so we can go out for a few hours today. I hate that he has to do that at 15 but he is a star. All my boys are.
Don't get me wrong. There are many people with far worse conditions than mine because theirs are permanent and I am forever grateful that I do get good days and indeed, good weeks. I remember getting my diagnosis and almost hugging the rheumatologist because it was Fibromyalgia and not MS, Lupus or Palindromic arthritis. All of which are in the same group as Fibro but also all of which are much worse. However I still had to come to terms with Fibro because it really is life changing.
Fibro varies greatly from day to day and person to person. It comes with pain, ranging from niggling toothache pain to excruciating pain that your sure would be easier if you just removed the limb in question, (obviously it won't), fatigue, such exhaustion your body actually shuts down mentally and physically, migraine, headaches, brain fog, loss periodically of gross or fine motor skills, tingling, numbness, memory loss, insomnia, stiffness, IBS, swallowing difficulties, ME, massive temperature variations, anxiety and depression. Not to mention the subsequent frustration and emotional roller coaster is brings. I think there is a whole other list of symptoms I have forgotten but this is a general rough idea of many of the common ones. This is why it is so difficult to diagnose because the symptoms are so varied and every day can present more or less symptoms than the day before. One day your fine and feel great. The next day your lying in bed and the duvet cover is too much to bare because it's causing you so much pain you would rather be cold, but cold limbs hurt more. The best bit is medics have no idea why we develop fibro, what it actually is or why women are more susceptible than men. They also have no real clue how to treat it. Some doctors don't believe in it. Some think it's 'All in the mind' but more and more doctors are starting to recognise the condition and offer treatments which 'may' help ease the symptoms. Unfortunately these treatments are usually anti depressants and strong pain killers, which can have side effects far worse than the symptoms themselves so it really is all a case of trial and error to see what works for you.
A flare up sometimes comes with pre flare up symptoms. Like mine this week. I knew on Friday it was threatening but resting would not have prevented it, so trying to do what you can while you can is precious. It's boring lying around all day, winging you are tired or hurt or just feel out of sorts. That's the hard bit for me when it goes on and on. I feel like I am always complaining because the pain is bad or I am tired. It's easy to say "Be positive" A counsellor once told me that when people asked how I was to say I was fine because If I said I was fine I would feel fine. Stupid man. I do say I am fine and I am positive and I do a lot more than some other people who have this condition but saying I am fine does not make me fine. If wishing this disease way or saying I was fine would take it away I wouldn't have it in the first place.
The trouble with fibro is people don't believe you. Someone once said to me "Oh I had that once but healing at my local Church took it away" Oh How I wish that would be the case. The chances were she was one of the very lucky and very few people who have fibro for a short time as a reaction to a virus and then get better. There is a small proportion of people who do get better from it within the first five years and I couldn't be happier for them. For the rest of us we have to learn to manage it and cope the best we can.
For me I do find diet helps. Keeping caffeine and alcohol to an absolute minimum. Cutting sugar down. Keeping treats like chocolate for special or odd occasions. Drinking mineral water instead of tap water. Exercising daily in what ever way I can be it yoga, walking, swimming, biking. Some times it isn't possible but I try and do something every day because the fitter and more mobile I am the better. It's not always easy and sometimes you really have to force yourself to go through the pain barrier but the results are always positive in the long run. Getting enough sleep is also a major factor and this means cat napping during the day if I need to. I simply don't listen to those who have a go about me having a rest or say they couldn't possibly sleep during the day because I have to do it to get me through the day sometimes.
The days when I don't need a sleep I am usually in bed just after the boys but if that means being able to get through a whole day without a sleep or feeling so tired I could fall asleep on a washing line then so be it. Some of my friends think I am boring because I don't drink anymore and can't go out clubbing all night anymore. Well so be it. They are not true friends because if they were they would understand that if I go out I am often in bed for a few days afterwards and that just isn't an option. I do however have some amazing friends who really understand and work around me. Last year we went to London and I was having a really bad few weeks. All of the girls took turns to be with me (although I was quite happy for them to go off and do their own things), they made sure I ate when I needed too, rested when I needed too, they didn't expect me to drink when I said I had had enough and when I was tired in the night club a few of us took a Rickshaw back to the hotel for an earlier night. They helped carry my bags and made sure I didn't have to walk to far and I can honestly say they were amazing. I do love those girls.
And that's what living with fibromyalgia is like. It's doing what you can when you can. If your having a good day, go out and really enjoy it. If your having a bad day find things to do that the whole family can enjoy without making yourself worse. Watch what you eat and drink. Don't push yourself to levels of exhaustion, exercise daily in whatever way you can and by doing all of these things you will find that gradually you can do more.
The hard bit is accepting that no matter how much you look after yourself and how much you rest a flare up will hit when it hits but by being physically and mentally fit you can cope better and the flare up shouldn't be as hard hitting or last as long.
Try and accept that you will have crappy days, for me it is worse when the days are dark and or damp, but that days do pass and the next day brings the potential of a good day.
Don't take to heart peoples comments. No matter how well meaning, because only you know how you feel and what works for you.
Understand that sometimes family and friends seem to be unsupportive or over bearing but it is only because they want to help and feel useless that they can not take away your pain.
And most importantly live life in the best way you can. There are lots of negative about having fibro but the good points are you do get remission phases and it isn't life threatening. The immobility and pain are not permanent so no matter how difficult it can get, you do know that there are good days ahead and by helping yourself, and not fighting against the disease you can assure you get more good days than bad.
Treatments that I personally find helpful are Massage, Reiki healing, Meditation and swimming. I self treat as much as possible an my husband and sons do massage on me but I do feel I have better effects when I can have Massage or Reiki from a practitioner but I can't afford it if I am not working so it is all a circle. If only the government would see that holistic treatments are as important as the medicines they prescribe, (which don't usually work), they would save money in the long run and have healthier happier patients. Maybe one day!
Recovery! What does that mean?
Well for me it means progressive good days, some bad days, but days I can handle and then there is the ugly days. You know the ones where you feel you have been thrown back to the worst days of an illness and you feel completely helpless to do anything about it.
Since having the anxiety at such high levels this year I can honestly say the fibromyalgia pain has been greatly lessoned. I know it's all part and parcel of the same thing but I suppose the adrenaline and steroids are so high in your body from the anxiety that it acts as a medication and dulls the fibro. Or is it that we are so consumed by the anxiety that we are just numb to the pain? I am not sure but what I do know is I would MUCH rather have the excruciating pain of Fibromyalgia over anxiety any day of the week. I can cope with pain. Anxiety is so physical as well as mental it is crushing, not surprising depression slips in after a while. The good news is I really do feel I have got topside of the depression. It wasn't long lived for me and I am deeply grateful for that. It was deep and horrendous while it lasted and did last several months but compare to what some people have to go through I have no right to complain.
The anxiety however has been a different story for me altogether. It has been totally crippling. 15 years ago my husband and I were attacked in Lincoln town centre by a young man with an axe. We had our 15 month old son with us and My Mother in Law. It was a scary experience of course but if you imagine that high intensity of adrenaline is needed in your body to fight...in what ever way you can for survival. We were lucky really. My husband was hit once in the skull (which cracked but didn't shatter) but there were many brave people around us at the time who stopped the man from attacking us anymore, a nurse was stood next to me at the time and along with the staff from The Body Shop's first aid equipment I believe she saved Dom's life. I truly believe we were surrounded by Angels that day. Both Earthly and Heavenly because of the help we received and I have no doubt that that support made all the difference to how we view the whole situation now. We never held any grudges or bad feeling because we found out very soon after the boy had a serious mental illness and had been in somewhere for 6 months receiving treatment, but that whoever makes these decisions thought he was safe to let out in society. He trashed his Grandparents home and came into Lincoln with Stanley knives and an axe. Why he aimed for us we have no idea. We were in the wrong place at the wrong time I suppose but looking at it from a different perspective, had Dom not moved his head, had he been shorter, or more frail, a child or an older person he would have most certainly been killed and that boy would have been up for murder...all because someone did not take his mental illness seriously. As it is we were told he wouldn't see the light of day again and this saddens me. Had he been treated correctly in the first place he may well have gone on to live a more normal life...he may not have but I felt we were all let down by the system. We felt for his family, who must have been devastated but we were not allowed to write to them or meet them or even know who they were. Even with all of this positivity It seemed to spark something deep within my subconscious which made me feel unsafe, but I would be lying if I said this incident was the cause of my own internal tourment.
I remember at 19 having a breakdown through illness. I was diagnosed with IGA Nephropathy at 17, ( a potentially life threatening kidney disease which can come with no warnings that your kidneys will fail or that can come with many symptoms, like I had) and had gone through two hellish years before that of constant illness with my kidneys and almost constant tonsillitis. It turned out I had a strep virus which was causing my tonsils to flare and the poison was affecting my kidneys through the auto immune disease. Eventually at age 18 it was deemed urgent that my tonsils came out and I was terrified of being put under anaesthetic. But I had the operation and it was certainly successful, in that my kidneys started to recover. I was on medication for a few years but that was fine. I was getting better but it was a long road. Again I think the adrenaline of having to fight for survival, (however different that fight may have been) was what had kept me going and once the fight was over I had nothing to fight so the adrenaline turned on me. I distinctively remember suddenly gasping for breath at work, feeling my throat close in, feeling dizzy and unwell, having little or no strength and each episode would come on so fast I would have to be driven home and they would last for days or sometimes a couple of weeks. But then it would go and I would be ok again for a while...until the next bout. But by age 19 wasn't eating at all because O was so anxious all of the time. I weighed 7st 5lbs and looked ghastly. My parents took me to a place called Reeth in Yorkshire where their friends had a caravan and I started to recover. I remember doing a cross stich flower in creams and peaches for my Gran (It is still in that house now) and going to a café called the copper kettle where day by day I would eat a little more until I started to have full breakfasts and chocolate fudge cake with chocolate sauce on...delish. I did gradually get better after that and at the age of 21 went off to live in Portugal for a couple of years, where I felt great and had no physical or physiological problems. Was it the fact I was in a different country? maybe. Was it the glorious sunshine? Maybe but I also think it was because it was a whole new exciting chapter in my life and there was so much going on I didn't have time to think about being ill so I stayed well.
So with all of that and more going on in my life (some of which I really do not want to write about) It is hardly surprising I suffer with an anxiety disorder and a one that is so physical over mental. I have said for years I am not a negative person and anyone who knows me will back this up but this year I have been just that and that has been the depression side kicking in. What caused this latest breakdown? A court case. A blinking stupid court case because I sold a man two summerhouses via my then successful business, and the numpty couldn't read the instructions. He put the structures up without the apex roof supports...clearly depicted in the plans and even after we had been to see him, taken fitters, our supplier had spoken to him bla bla bla he still 'wouldn't' correct them because he wanted to keep his buildings AND have a full refund. It cost me a fortune sending him extra parts, taking fitters down, going to court, (Three times in a year), I would have been better off giving him his money back and burning the sheds but I was trying to do everything professionally. The problem was he would ring me all the time, for hours, send me numerous emails, twist everything I said. The man was not clever but he was a bully and persistent. He would ring us daily when we were on holiday, ruining our holiday, and I dreaded turning on my computer in a morning to see what emails he had sent. Eventually in July 2013 the court said they couldn't decide who was at fault so I had to pay for two new roofs and Mr P's court costs. I was devastated. We had Consumer Credit and Trading Standards on our side but It all comes down to the Judge at the end of the day and the bloke was a right tosser. In hind sight I actually came off better because the price I quoted to fix the roofs were what it would cost me as a company with my contacts, it would have cost him more and at the end of the day he has made such a poor job of erecting the summerhouses water was pouring out everywhere (something else we had offered to fix) so his buildings were ruined but this wasn't really a comfort to me. My husband was just pleased it was over but I was so eaten up by anger and frustration it was just the start for me. I couldn't stop thinking about the whole situation. It had left me broke and our supplier almost stopped supplying us with buildings, they said they didn't have any available, so we had no way of paying back the debts. I had already given up my warehouse and let people go but I still wasn't making much money. The few buildings the suppliers were selling us were all substandard and I ended up giving more out in refunds than I made. We had just committed to buying a brand new house and really thought business would pick up so we went a head with the move, and we are still pleased we did, but it cleared us out financially. When the supplier finally admitted they were struggling themselves and had to let go of 50% of their staff and put the rest on 3 days weeks it was too late. The house was bought and we had moved in. I was left with debts. no wage and because of the fibro I knew I would struggle to find a 'normal' job working for someone else because I couldn't say when I would be well or unwell. The anxiety rose to an all time high and my health started to really suffer. First the fibro got so bad I couldn't walk, had to use sticks and some days couldn't get out of bed. then the anxiety turned into panic attacks which would literally take me to the floor, gasping for air and I became afraid to go out because I often ended up in an ambulance and I became afraid of being alone because the attacks were so terrifying.
Writing all of this down today really helps me to see where all the anxiety came from and why it has affected me so badly and if someone else was telling me all of this I would be sat mouth open telling them I wasn't surprised they had become so ran down. But we put pressure on ourselves to carry on regardless don't we? We don't see what we have as an illness and not our fault, we see it as a failure to be strong. A weakness and that puts even more pressure on us and we fall even lower. Hiding the symptoms, withdrawing from friends and family and life in general and we become consumed by the dreaded illnesses themselves until we can't see, think or do anything else.
Now many people go through all the sorts of things I have been though and come out fine...or seem too. Some people will say they haven't been through nearly as much as this and yet they have still been just as ill. But what brings us to anxiety and illness isn't important. We all have stresses and strains in our lives and I believe it is the smaller but more prolonged issues that bring us crashing.
The last 10 months or so have been a complete roller coaster of emotions for me and it has not been a nice one. I never did like fast rides. But it has also been a real learning curve. I have learnt what is truly important to me. I have learnt to forgive and not hold onto anger. I have learnt to sit back and just be and because of all of this I am gradually getting better. I started getting the odd hour of feeling better. I started to be able to sleep, without so many horrid dreams, I started pushing myself to go out and to be alone and it is getting easier. I have learnt to review situations and not compare them to anyone elses but to see who events and emotions affect me. I can't compare myself to Joe Blogs next door because I am not Joe Blogs and Joe Blogs is not me. I take the good days and do what I can and I try to plan my life so I don't take on too much and I try to do things that feel good for me. Even if that is sitting reading a book or crocheting to relax because people who suffer with fibro, anxiety, depression, arthritis and the like, tend to always try to be not just as good as they perceive anyone else to be but better. The truth is we don't really know what anyone else is going through, feeling, experiencing because we only see what they want us to see and this is also susceptible to our perception so we are adding un-necessary pressure onto our selves and that kicks down to our families and friends too, so we with draw further and the whole situation spirals. Doctors are great at handing out pills and telling us to take it easy but that doesn't help us get our lives back on track or pay the bills!
Now as I said I have come a long way even just since the end of the summer. I now get whole days of low or, date I say it, NO anxiety. This last two weeks I has about 10 days straight of either very low or no anxiety and I can't tell you how good that felt! Then gradually I started to feel a little anxious for a few hours and had a couple of mild panic attacks...which I managed skilfully, but then on Friday I had a bit of a shock and it flung me backwards about 6 weeks in my recovery. It has been the end of term service at School. I was tired. I had taught a swimming group in the morning and I could have done without it but I went. The boys were all tired to and our Middle son had been a little challenging the two days prior and I am ashamed to say I had lost my temper with him both days...no excuse I know but I am human and we all have temper fits at times when out kids push us to the limit. Hence the adrenaline in my system was growing. Now this was still a vast improvement because a few months ago just having a conversation with a friend produced enough anxiety to put me to bed for the rest of the day. After the service I took my youngest into town to treat him to a new Halloween costume and some sweeties. We saw a nice little lamp which would have gone in his room and stupidly I reached up to touch it on the metal shelf. Well you can guess what happened next! Yes I got an electric shock. Not a bad one but it went right through me and made my heart pound, my head hurt, my fingers tingle and of course a panic attack ensued. I reported the incident and it was all dealt with really well by the staff. I was laughing at the whole situation and the anxiety subsided really quickly which I thought was massive progress and I drove home feeling silly but fine.
The next day I took our dog for a walk with the husband and it was lovely. The sun was shining. There was a real autumnal nip in the air and we were just enjoying being together and having some us time out in the country. My breathing felt tight tho and the walking and talking was making matters worse. I was determined not to give in and kept walking. ( I mentioned some of this in my last blog). We went to Newark, about 20 mins drive, went into three shops, because I wouldn't give in and go home and then I crashed. Now I did start flaring up with fibro later that day. My whole body started to hurt but I had all those unwanted feelings of anxiety and migraine too but without the headache. Mixed with all of this is the fact it would have been my Gramps 90th Birthday on Saturday and I know I am really sad he isn't here to celebrate it. He died just 8 weeks ago and if I am honest it still hasn't really sunk in. So this recent set back, was it because I am grieving? Possibly. Has it been because of the shock on Friday?...it did add to it. Was it loosing my temper at my son two days in a row?...that may well have had something to do with it...was it related to my flare up...most likely...did I feel I had totally gone back over? Yes most defiantly. Did I put pressure on myself to get well asap? Yes. Did that work? No it made me worse actually!
Even yesterday was plain awful with pain and anxiety but I went along to my Osteopath appointment anyway and had a treatment on my neck and shoulders for tension because this makes the dizziness so much worse. he did warn me it could make the flare up worse initially before it made it better but to be honest the pain was horrendous and I had counted down the hours to seeing him so I went a head with the appointment. Oh boy did I relax and I off loaded. Mark is a friend s well as a therapist and just talking to him helped me put things into perspective. I felt so much calmer during that treatment and it was wonderful but as soon as I stood up it all came flooding back. I felt dreadful so I made an appointment for two weeks time and left rather quickly. My neck and shoulder went into spasm and I was in agony. So my husband bless his heart made tea for everyone and I had a hot bath in Clary sage and sea salt and went to bed with a warm hot water bottle on my shoulder. I did relax quite quickly and I had a wonderful nights sleep. The pain in my shoulder is still agonising but the flare up is dying down but the main thing is I feel so much calmer today, I feel almost normal actually. (If that's possible ha ha)
I really do think that this set back has actually been an important step forward in my recovery. Yes it's been an ugly few days. But I have had much worse and I am still convinced I am getting better. I am learning to be kind to myself and see stressors as they happen. I can't always avoid them but I can accept them and I also accept that there will be good days, bad days and probably a few more truly ugly days in the future but that they are all a part of my recovery and that actually they make me who I am too! If nothing else they show me how far I have come and remind me of what I am trying to achieve. Today is family day and although I may not be up to doing quite as much as I would like I am really looking forward to spending time with my boys and making precious memories for the future. We have also made plans to see my family and do something special for Gramps on his birthday and we have vowed to make it a happy occasion to celebrate his life but also to share our grief so it doesn't feel quite so heavy to any of us, because lets face it, we are all feeling it in our own ways.
The fact that I am sat here today writing about all of this shows me how far I have come and putting it in to perspective helps me to build solid foundations future, one block at a time. So I am off to get dressed now and make the most of this glorious sunshine while we have it. I hope you all have a great day too no matter what you do. x
Don't you just hate it when you spend hours blogging and it disappears from sight and no draft has been saved? I am so frustrated right now. It's been a rubbish day already and I had written all about it...although I do feel much better now...or at least I did until it disappeared! Maybe the was why it happened? To make me realise how much better I was feeling...Could have realised that without 2 hours of work going missing mine but then that's kind of how I am feeling today!
This morning I got up feeling a little tired but fine. If anything I was excited because it is the first day of half term! (Whoop whoop). I had a lovely leisurely breakfast, spent some time with my husband and then we got dressed and took our dog for a walk up a lovely country lane near where we used to live. My chest was tight and so my breathing was a little difficult but I was ok. We walked about 3/4 of a mile and my head started to feel dizzy so we slowed our pace. After a while I felt better and then came the waves so we walked to the gate at the end and turned back to go home. We had walked as far as the path lead anyway so we weren't coming back just because I felt a little off. As we came down the lane I started to feel worse and worse but kept plodding on chatting and stopping to touch my favourite tree, Jasper. We had already planned to go to Newark to collect my laptop, (which has been in PC world for a total of 6 weeks out of the 12 weeks I have had it) and to take back some Next clothes I had ordered in the sale but decided not to keep. Dom drove to Newark and we chatted as we drove. I had the window down slightly to help my breathing but on the whole I was feeling better. When the car stopped and I got out my head was dizzy and I felt that familiar spacey feeling creeping in but I was going to do my jobs. After all even I spout on about facing fears and not avoiding doing things you want to do just because you feel a little anxious or unwell. In hindsight I think I felt generally unwell and not anxious. I had no anxiety symptoms mentally but I felt physically poorly. Learning the difference is difficult and so I pushed on. We collected the laptop (still didn't work by the way so I have re set it back to factory settings myself since bringing it home) and took the clothes back to next. I felt rotten but we walked down to TK Max to see if we could find some shoes for our youngest. There was nothing in his size but by this point I was feeling like I was going to pass out. You know those waves you get, where you feel like your being pulled backwards out of your body? Your arms and legs go heavy and like jelly, the word spins, you loos the ability to communicate efficiently and you turn ice cold and start to shake? Well I had all of that and it came on so suddenly. I was lucky that I had gone with Dom and not on my own as I had planned and he helped me back to the car and drove me home.
In a way I felt defeated because we had planned to go for lunch and get a few bits in Morrison's but actually I had achieved because despite feeling rough had gone out and done 2/3rds of what I had planned successfully. When we got home I came straight to bed with a hot water bottle and started to feel really down on myself. I have had two really good weeks of very little anxiety, only a couple of mild panic attacks and generally I have felt great so to have such a bad day is hard to take. Of course I have to take into consideration my hormones are raging as it's close to that time of the month we all hate, I am tired. I have been working on a few clients every week now with my holistic business as well as writing my blog and I am back to volunteering for swimming club and school a few hours a week. This week I have really tried to slow things down but you can't help life sometimes and it goes so fast you can't slow down. The boys have had foot ball training, matches, swimming, gala's, then there's been my writing and my work, keeping the house clean and tidy, planning a meditation evening, which had a small turn out from what I had expected due to the response I had had but was lovely. Then there was harvest festival and this week for some unknown reason all three of my boys have played up at some point and I have been really cross a few times...not like us at all really. Then to top it off it will be my Grandad's 90th Birthday on Saturday, ( We lost him 8 weeks ago), and less than two weeks after that will be the 5th anniversary of my Grans death, so I am upset.
Looking at it logistically I am not surprised I'm feeling off today with all of that going on. It's a lot for anyone to take but when your in recovery I think it can be harder because your still trying to cope with just every day stuff. I made a post on a website for anxiety and depression sufferers just saying how I felt and I had a few comments back from lovely people going through the same as me...and countless others...that sometimes we all have bad days and it's important to see it not as a set back but more as a reminder of how far we have come! The fact I am moaning that after 2 brilliant weeks I am having a bad day means I have had 2 brilliant weeks! I have to say it must have been 10 or 11 months since I could say I've have more than a couple of days consecutively of feeling good and anxiety free or at least very low anxiety. I speak to people every day who forget to count all the blessings of the day, no matter how small and only focus on the bad stuff and yet here I was feeling really down because I did feel so very poorly, but because I felt I had gone back over and in actually fact even without anxiety, fibro or depression I would be allowed the odd rough day.
Before my Grad died she used to sing 'One day at a time sweet Jesus'. We played it at her funeral. Because that was how we got through those tough days leading up to her death and also the 5 years since. I think it was possibly my Mam who came up with it actually...she has a song for everything...and I had almost forgotten it because my last few weeks have been so good I dared to think too far ahead. I'm not saying I can't look ahead and try to aim for life in full recovery but what I am saying is that in doing so I still have to live today for today, and that means taking today as it comes and getting through it, bit by bit. One day at a time. I have been so busy focusing on being positive and getting better I have pushed some important feelings aside. I am allowed to grieve for my Gramps, and indeed be sad it is five years since Gran left us too but I usually forget to allow myself to do this because I am so busy telling myself they are safe and well now and they are together. They are safe and well. They are together. We have been extremely lucky to have had such wonderful people in our lives and be so close to them...all of my Grandparents were amazing...but I am also allowed to feel sad they have gone from our physical lives no matter how close they are spiritually and I admit it, I miss them all with every cell of my body. Especially my Gramps because he has been the most precious person in our lives since the others passed because he represented them all an while he was here we felt they were all here really. Gramps was such a very special individual on his own terms. He was kind, caring, loving and always put his family before himself, he put everyone before himself, even up to the very last moments of his life.
As a psychic medium I was lucky enough to have a message a few days before his passing and I was able to go and see him. Dom, Ben and I spent 2 glorious hours with him the day before he died, laughing and talking about everything past and present but I knew he was tired and It was his time to go. In fact despite being heart broken when he passed it was a massive turning point in my recovery because I know that he is always with me an I know he would be sad to see me upset or unwell. he hated it when I was in pain, or unwell and it worried him so I thought I had better get better so not to worry him now. Maybe that's another reason why I push my feelings away?
Today I am going to recognise I am tired, and a little sad and I am going to allow myself time to grieve and rest because I know that today is just a day and tomorrow is a new day. How I treat myself today will shape how I feel tomorrow and I owe it to Gramps to get better and live a long happy life with my family for him. I am recovering well and even in recovery we all have set backs. It's how we view them that impacts on how well or how quickly we recover! So I think I shall still praise myself for trying today and then recognising when it was time to rest because that in itself is such a long way from where I was even a few weeks ago :)
Hi my Name is Philippa Woodsford and I am a Holistic therapist, Reiki Master Teacher and Hypnotherapist. I suffer with anxiety and depression due to a condition called fibromyalgia which I believe is linked with an auto immune disease I was diagnosed with at just 17. My blog is written for me as a sort of journal but also in the hope it may bring hope and healing to others suffering with similar issues on a daily basis. Enjoy