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.
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