I have had the most amazing weekend with my husband this weekend. I think sometimes we just forget to spend time together. He is always working and I am always busy with my hobbies, work and the boys we often look forward to the weekend all week then on Sunday evening say "That weekend flew and we've not done anything together!"
Well this weekend was so different. On Saturday Morning he went to work and I stayed at home with the boys. The little one was feeling a bit sick and I had spent the night cramped up in his single bed with him, so I was tired and I had a client at 9.30 for a massage. But when he came back at lunch I was determined to treat him a little. I had left my couch up and made sure he had a hot shower and a meal ready for him. I gave him a back massage with a complimentary crystal chakra balance and Reiki infusion. Then we went to my hairdresser where I treated him to a wash, cut and finish...including eyebrows and we spent some time just looking round the shops. We made pizza for tea, together, and then Sunday I went to work on the farm with him. I say work. I basically sit in or drive the tractor and walk around the fields counting sheep but it's a glorious way to spend a Sunday morning. The sun was blazing, the sky was blue, the birds were singing and it was just me and my man, no one else around for miles. Glorious! The afternoon was spent with me blogging and scoffing chocolate but we were still together and shared making a lovely Sunday lunch...at tea time. :)
It sounds so simple but there are many times when my anxitey prevents me from doing such things easily and the fibromyalgia pain can make being out and about exhausting and painful but on good days like this it is the simple things that really give us pleasure. The down side is that as relaxed and enjoyable as that weekend was I am now shattered with a capital S. I used all my spoons and because it's raining today (and as much as I love the rain and I really do, I hurt when it's damp and if I am tired too that becomes a difficult day). Now don't get me wrong I am happy and I am filling my day with lovely things like blogging, chatting to my friends on fb, catching up with telephone jobs and doing bits of crochet whilst watching the T.V so I am still busy but I am aware that in a short while I'm going to need a sleep because I am so tired and I hurt. I have to accept that if I give myself big jobs to do I probably won't get them all done but I have learnt to accept that some days are busy and pain free, others are less so and others ... well we write those days off and wait for the next day to come.
So today it is raining and I am hurting. Different things set fibro symptoms off but dampness is certainly mine. It's funny how people react to seeing me look all glam and happy one day, striding it out and the next I'm like a little old lady with my walking sticks, comfy clothes and flat shoes. On really bad days they don't see me at all but I always get the same sort of comments.
"What have you done now?"
"Oh I would never know you had an illness you always look so well"
"Ah it can't be that bad because I saw you yesterday in the pool and you looked OK then"
These are the nice comments. Some people are down right rude but then the people who know me, and I mean really 'know' me are wonderful and kind and always make me laugh because they know what it's like for me and they take me as I am day to day.
So what is it like having Fibromyalgia. Well it's a difficult one to describe because it affects me in so many different ways and for everyone effected it is different. Fibromyalgia hasn't long since been recognised officially by doctors or the government but it has been around for many years. It is just becoming more recognised and I suppose because of the pace of life these days more people are suffering. It is now recognised as a auto immune disease and it tends to affect more women than men.
The symptoms can vary greatly from person to person here are some ofthe symptoms I have: -
IBS, Acid Re-flux, difficulty swallowing, pain in my joints, muscles, tendons and nerves which ranges from mild niggling pain most days to excruciating on the ceiling sort of pain, which can come on all of a sudden and last anything from a few hours to days or weeks. I get tired easily. I have periods of anxiety and depression. I am prone to chronic fatigue especially after busy/stressful times or bouts of illness. I suffer headaches and migraines, muscle tension. My skin itches especially at night and I get weird sensations like worms wriggling under my skin. I can be red hot during a flare up or freezing cold. Sometimes I can't sleep for months on end and other times i sleep constantly for days. Emotionally I can go from iron lady to melting puddle. My vision and hearing is affected. My skin becomes sensitive and I am sensitive to certain foods, probably because of the IBS. My memory is affected and sometimes I can't remember my own children's names. I get fibro fog which is basically brain fuddle and I do things like put the tea pot in the fridge. Put washing in the dryer...unwashed, loose things because I have put them somewhere and have no idea of where that is or that I even had them to begin with. I forget alsorts of things even 30 seconds after I have done it and I get very confused at times. Mostly it's quite funny, Sometimes it's scary but we always try to see the funny side. The boys and my husband joke all the time about some of the daft things I say and do but I know it can be unnerving for them too.I lost £300 last year just by putting it in a safe place. Unfortunately that safe place has never presented it'self to me since so I am in for a treat one day in the future when I find it stuffed in a sock or hidden in a shoe box. Of course I may have thrown it away...that's happened before.
There are lots of symptoms to fibro some minor and some very significant and each day is different. Life is never boring with fibro but it can be difficult for a sufferer to come to terms with and even more so for their friends and family. A Fibromyalgia patient like so many other auto immune disease patients, looks perfectly normal and healthy. You can't see the pain inside of another person can you? And as one day they will be fine and the next they are crippled and fibro has so many different symptoms which change constantly it is really hard for family and friends to understand.
This is a quote from a lovely lady I was talking to this morning on a facebook group
"I have Fibro and I have always struggled to explain to people when they ask. I don't think my family really understand but they put up with me. My husband is really understanding (but I think he's also confused sometimes) I just need to keep more 'spoons' so to speak and not waste them by doing a lot of stuff can wait - I have a tendency on a good day to do everything so the next day I have hardly any spoons at all"
The spoons she refers too are a theory which was devised by a Lupus Sufferer trying to explain to a friend what living with Lupus was like. She basically says she has 12 spoons a day to live her life by and she has to choose what to do with her spoons in a morning to make sure she has enough spoons to get through her daily tasks. Now spoons here relate to energy. For instance getting up and getting dressed is one spoon. (The energy it takes to get up an get dressed) Getting her family ready for school is another spoon..or two. House work uses spoons. Walking the dog is another spoon. Working can be one or more spoons depending upon the amount of work. Shopping is another spoon. It sounds like you can do a fair bit with a spoon but 12 spoons really isn't a lot and some days your spoons are bigger than others so tasks may take more or less energy depending upon your symptoms that day.
The lady I was speaking to this morning has a 10 month old daughter and she wants to take her to a play group later this afternoon, but she already knew that she was short of spoons today because she was already tired and knew she would have to borrow from tomorrows spoons in order to get through today but that that would mean tomorrow she would be exhausted and unable to do anything much...rather like how I am feeling today. For many spouses, friends and family members they may see that a fibro sufferer or indeed someone who has depression, anxiety, lupus, arthritis or any similar disease, as boring because they don't go out so much anymore or they don't socialise like they used too and hence they stop asking and move onto new more exciting circles of friends feeling frustrated that their 'playmate' isn't interested anymore. In actual fact that person has just had to prioritise how they spend their spoons and doesn't have any left to go clubbing, shopping, socializing etc but they would dearly love to have a quite night in and catch up or a snuggle on the sofa in front of a film. It's not that they don't want to do things it is a fact that when they are in a flare up situation they have to treat every last spoon like a treasure. I have lost so many friends because of this but to me they are not really friends. They are fair weather friends who only want to be around people they can get something back from that suits them and that's not friendship. I have also gained a lot more friends and forged much better relationships with true friends who are happy just to see me, even if I am in my PJ's having a coffee at home.
My husband is a star but it hasn't always been like that, he didn't understand for years either and there were times when we almost split up because of it but partly that was my fault because I didn't understand myself and couldn't explain it. It took around 20 years before a doctor finally put his finger on it. I had had MRI scans looking for tumours and MS and numerous other illnesses, my bloods were always clear which baffled my rheumatoligist and a nurse at the hospital told me I was faking it because a student Doctor had told her there was nothing surgically wrong with me. I had weeks or months with no symptoms then weeks or months feeling really ill. Not really surprising anxiety and depression come in to play
is it? What a cold, dark lonely place to be! My husband, children and extended family and close friends have learnt together about this disease and my needs and we are all learning how to understand each other better and be more proactive in the support sector. It's easy to say someone hasn't been there for you enough or hasn't supported you in a way you needed them too but ask yourself this. Have you given them the opportunity to do so? Have you handed them the tools or helped them to find a way to help and support you because it's a bit like having a baby, Some people just know instinctively what to do. Some people stumble along and find the way and some people just need to be shown because they really haven't got a clue. We are all different and communication is the key to finding a way forwards together.
I was lucky in a way because my Dad has palindromic rheumatoid arthritis and so I had grown up seeing him in pain, learning what he could and couldn't do and understanding that he needed to be in control as far as he could of his own life. I have also seen my Mam being a full time carer of him and us and also trying to run the house and for a long while work too! They were my support for many years. I felt at times like they were the only people who had any clue as to what was going on and even now on really bad days i'll call my Dad and we'll chat about the pain and the frustration because he knows exactly how it feels. My husbands Father also has arthritis and several other health condition's and so there was understanding from that side too. I know just how lucky I am because not many people have any of that.
As bad as all of this seems at times there really is light at the end of the tunnel. As with any long term illness some people find a cure. Most people niggle on for years and some very unfortunate people live terribly debilitating lives but there are things we can do to help.
The first, single most important thing is positivity followed by acceptance and a desire to be the best you can be. Not how you were. Not how you think you ought to be or want to be. Not to be like someone else, even someone with the same condition because you are you and you are not anyone else. You have your own gifts and your own limitations and your own game to play. So play it like you want to finish and not just like you ant to win because if you play like you want to win you'll never reach the end. Remember the story of the tortoise and the hare? Well that's you now. You were the hare and now you are the tortoise...but the tortoise not only finishes the race, he also win's it!
Many Doctors offer anti depressants and other drugs to fibro sufferers because it can ease the nerve pain, dull the symptoms, help promote sleep and relaxes the muscles. Unfortunately not that many people benefit from such treatments and the side effects of the drugs can out weight the symptoms. Plus you can end up going on several drugs to treat each symptom. Anti depressants, a muscle relaxant, one to make you sleep, one to wake you up, one to ease your digestive problems, several strong pain killers which can knock you out for hours or make you live life in a haze ...if you have fibro or similar you know exactly what I am talking about. I have been on several drug concoctions and for me I chose not to use medication. I'm not a doctor and I am not advising anyone of what they should and shouldn't do that is for them and their doctor to devise. What I am saying is the drug route was not for me. '
I have kept food diaries, activity diaries, stress diaries and found that yes thee are links but there are no hard and fast rues to fibro. I have had weeks of being very busy and not had a crash of any kind and i have had weeks of little activity to find I have crashed in a big way. Sometimes the effects are delayed...a busy or stressful day on Friday may be related to a crash on Tuesday but you can't live your life not doing anything on the off chance you'll have a crash because the chances are at some point you will crash anyway! None of these will cure you but they help you to see your stressors & triggers and will show you just how much you do do in a day. They will also give you a guide as to how much energy you do have and help you to feel positive about your achievements.
I keep stimulants to a minimum and only have them as a treat. So i drink boiled water or fruit/decaf tea's a lot and only have a cuppachino or an alcoholic drink for a treat. I love chocolate but again have it as a treat once or twice a week. I don't eat foods that spark my tummy off like cream and eggs. At first you may feel your missing out but after a while when you feel better you will see the difference a little sacrifice can make to your quality of life in general.
I try and go for a walk at least once a day even if it's just 10 minutes (but usually for 30 minutes or more if I can) especially if I have pain because exercise really does help to free off muscle tension and reduce pain. I swim once or twice a week and if I can manage a bike ride or a gentle gym workout (devised specifically for my health needs) then I will do them also. The fitter you are the healthier you are and the stronger your immune system, muscles and joints. You have more energy because your metabolism is healthier and your muscles are more efficient at burning up calories and making energy which really helps with the whole spoon situation. Exercise also releases endorphin's, feel good hormones which help you to cope.
I try to plan so if I have a few busy days I make sure I clear my diary so I can have a few chill out days to re-address the balance.
I don't push myself too hard especially on difficult days. I accept that some days I will do more than others and so I prioritise. Keeping a block of post it notes or note pad is a good way of making sure you use your spoons for the important jobs until you get used to doing this naturally.
Feeling guilt is a no go area. I'm sorry but so many people (including me) apologise for having a flare up day or a slow day or for not being on top of things. We'll that's just a waste of energy and needs to stop right now! Counter productive negativity is the first thing that needs to go. Spoons are not created for that so why waste them?
Find something every day to be glad about. Like Pollyanna (my favorite book of all time) There is something in each day to be thankful for, not matter how difficult the day is.
I found different ways to interact with my children. I couldn't run and jump about anymore so I learnt to swim properly because all my boys are little fish and it was something I could do without causing more pain or fatigue. Anyone can bob about in a pool and kids love it but actually I learnt that swimming really helped my condition and took the mental stress and worry out of it too. I then trained to be a swimming teacher so I could coach them all at club and tech for the school a couple of hours a week. I don;t always manage to do as much as I would like to with this but If I can help out once or twice a week and spend time with my boys at swimming club then that's brilliant and they love it as much as I do. We play board games, we paint, make play dough, bake, watch films, do crafts and we talk and sing. I am currently teaching the older children about holistic therapies such as Reiki, massage and animal healing. We bought them all a small animal each and enjoy playing with them together. There are so many ways to interact with kids without doing physical stuff on flare up days. So instead of concentrating on all the things you can't do focus on creating things you can do to enjoy life.
I have walking sticks which at first I hated but then I realised I can have patterned ones with roses, flashes of colour and even diamonte's. It's now a standing joke that I have sticks to match my outfits and shoes. Its gone from being something tat depressed me to a fashion accessory that makes me feel good about myself.
To deal with pain I have had hypnotherapy. It's a great way of learning to control pain via a pain dial in your minds control room. Meditation and regular self Reiki treatments means I can recharge my batteries in a few moments to give myself just a little boost to get through the day when I am unable to rest as much as I need too. Because of this I barely even take pain killers now. Crystal therapy is another brilliant way to re-balance your energies and heal your body inside and out and again you can use this yourself or have hands on or distance treatments. It doesn't have to be expensive to use holistic therapies because you can do a lot yourself and your family members can help which helps them to feel useful.
Other ways I have found to cope is to do a hobby or craft. My particular hobby to do when I want to feel I am doing something is crochet. I can do this even on bad days (hands allowing) and I have made gifts for friends and family for birthdays, Christmas, weddings, christenings, births, etc. I also make things for my own home like pot holders, tea cosies, blankets, tie backs for curtains, toilet roll holders etc.
I write my blog which not only helps me to get my feelings and thoughts down on paper but it also helps others who suffer with similar conditions and that gives me a feeling of self worth and accomplishment. I read too. I read novels, and holistic books, I read websites and self help books. I watch films and I people watch which helps me in my writing and in gaining an insight into other people's lives.
I actually am quite grateful to my fibromyalgia now because it has taught me to slow down and really enjoy the simple things in life. We may not have the money we had when I was running my garden buildings business but we have more quality time as a family and find less expensive ways to enjoy our time together and actually we always have what we need and I do work part time doing a job I love but then I am busy filling my life with all these little treasures I have mentioned so actually I am just as busy as before but my life truly is richer and I feel more fulfilled Spiritually as well as emotionally. I am grateful every day for my family, my home, my friends and all the things I CAN do. I have re-learnt that finding a hobby or relaxing in the garden in the sun is not just an idle pass time but a valuable tool to well being. I treasure my loved ones and the time I spend with them. Without Fibro and all the things that come with it including the anxiety and depression I would not have looked deeply within to find out who I really am. I would not have made time to write most days as I do now and instead I would spend my life wishing I had time to do all the thing I love. Well now I have that time and I am all the better for it.
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