Monday, 9 January 2012

Fibro My What?

Are you sitting comfortably? I'm not, but let's begin anyway.
I have a condition called fibromyalgia. It is strangely comforting to say that as it took seven years of going to my GP with the same symptoms to get a diagnosis. It was a new locum doctor at my surgery that first dropped the F word. I'm ashamed to admit I dropped a few F words myself, but I suppose I can be forgiven.

Since I was fifteen I have felt tired, unable to do anything more than basic levels of exercise (though I never moaned about that at school as any excuse to get out of PE was a God-send), forgetful and clumsy. This was all put down to being a depressed teenager with growing pains.

I was constantly getting hassle from teachers about not doing my homework and still being at school at five o'clock on the last day of my coursework extension. Even I thought I was just lazy. I was good at school and I knew the answers so why did I always get such mental block? Lack of effort? Distracting myself with friends, or books, or food?

I managed to get all A-C in my GCSEs and got into college to study forensic science. I soon realised the course wasn't really what I wanted to do but I'd started and intended to finish. But the same problems soon started. I was always tired and found it difficult to concentrate in lessons and this time I wasn't chased for coursework so I just didn't do it. I left at the beginning of the second term and got a job in a supermarket.

I went back to college the following year and did my A-Levels. I pulled myself through them and got into University to study English. I wanted to apply for Cambridge but was discouraged from doing so as I missed quite a lot of lessons and my tutor didn't think it was worth it. She was right really.

At uni, guess what? Same old, same old. I began regularly missing lectures, I couldn't finish my reading in time and stopped doing assignments. I spent days on end in bed, only getting up to make pints of tea but even lifting the kettle hurt. One day I forced myself up and to the GP surgery on crutches. The pain was somewhat glossed over and I was diagnosed with depression, given medication and referred to the uni counsellor. I noticed a considerable change but it was too late, I didn't have time to catch up on the work so that was my first and only year at university.

I got myself a job in a call centre and survived on caffeine to get me through the day as the little sleep I got was constantly disrupted and plagued with lots of dreams leaving me more tired than when I went to bed. I wasn't reaching performance targets as I put off making calls. It can be quite embarrassing to phone a customer and within a minute or two forget completely what you're meant to be saying to them! I missed a couple of weeks of work as I was stuck in bed and I was asked politely but firmly to leave on the last day of my three month induction, which happened to be the day after my diagnosis.

Fibromyalgia. Just one word but it explained away seven years of bad joints, exhaustion, poor sleep, forgetfulness, no concentration, headaches and stomach complaints. All of that clumped together as one problem felt good; I wasn't just sickly and getting every thing going around. But I was confused as I'd never heard of it before. The doctor told me it was to do with my brain rather than my joints as there was nothing physically wrong with them. She also advised me to be very careful using the F word as it had "negative connotations".

I wasn't given any information and went home and looked it up myself. I have a fairly good understanding of what the condition is now but I don't want to go into much detail here as I don't want to accidentally mislead anyone. My basic understanding is it is caused by chemical imbalances in the brain that prevent one reaching the deepest stage of sleep and sending pain signals from areas that are physically fine.

Fibromyalgia can't be cured but most symptoms can be relieved to some extent. Mild doses of anti depressants can help with the sleep. One thing that kept popping up was diet. Following some advice I read I cut out my extravagant consumption of caffeine (and boy, was that hard! How do people come off heroin if I found it that hard to stop drinking tea and Coke?) and also to cut out white flour, sugar and alcohol. I'm already a vegan and restricting my diet further wasn't much fun and I began to resent it. However, two weeks later I went for a walk around the village. That might sound like nothing but it was the most activity I had done since I was at school, some four years before.

That was nearly two years ago now. I have a job in a hospital and I'm currently applying to go back to university to study English and Creative writing in September and plan to keep studying until I'm Prof Sophie May. I also have the energy for hobbies again! I make clothes, read, go to all my boyfriend's gigs and I'm writing a novel. I stick to my restricted diet and have vitamin B12 injections every three months to help with my memory and concentration.

I still get bad days. I'm having one today and haven't been out of bed yet; it's taken me some time to write this! Sometimes that's because I slip up and have a glass of Coke or a sandwich with white bread. Fibromyalgia also adds an extra kick to any hangover! The biggest factor I can't control completely is my hormones and PMT to me is three days in bed, tired and aching, but that can be helped to some degree with things like the Pill and contraceptive implants. I'm just grateful it's only the odd day.

I started this article planning to make it humorous and light-hearted but found it surprisingly difficult to make light of. The one thing I really wanted to stick to was not making this a sob story or to make people think I'm being somewhat brave or hardy by getting through it as I'm neither. Everyone has things they have to learn to live with as this it for me and many other people. I just wanted to give you a glimpse into our world.

Written by Sophie May
Edited by Emma Davies

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  1. wicked article Sophie, no tea and sympathy from me but from one person to another living with pain and medication, well done you xx

  2. I think you are amazing sophum! Much love, love Ali xxxx

  3. Had never heard of fibromyalgia. Very interesting article, thank you.

  4. Excellent article. I am going through the same situation now. Where it can be one of 3 things. Being a self-employed Driving Instructor these feelings of pain and extreme fatigue are a pain. I do fear it is affecting my business and now the stress of a bad reputation mounts and magnifies my condition greatly. Tomorrow I have another battery of tests and am considering changing my title to "lab rat". I also feel that the unexplained weight gain is depressing and all of this stemming from a car accident they like to say its depression. I actually think it depresses me more because they don't want to give it a name they can't explain. I feel for you and completely understand. Do you wake up in the morning and feel like yesterday never happened (especially if you have a bad day with fatigue)? I do, its embarrassing because I don't even remember conversations.

  5. It's so hard dealing with something that doesn't have a name. Fibromyalgia is quite often triggered by something such as a car accident so maybe this is what you have. Try mentioning it to your doctor when you go in for more tests. Be prepared for it to be difficult because I'm sorry to say some doctors are quite negative about FM (I think it's because they still really only know so little about it). I hope this article helped and that you get some answers, Sophie.

  6. What a brave lady you are Sophie! And a real inspiration! Well done for writing this!


    1. 100% agree. Brilliant inspiration, now go get your dream as it's got your name on it! X

  7. Such a well written and honest piece, Sophie. I'm glad that you were finally taken seriously and were given a diagnosis. Wishing you all the luck in the world with your journey to become Professor Sophie May and I hope you tackle any obstacles with the same attitude as you have dealt with this. Yay! Xx

  8. Thank you all for your lovely comments and best wishes.

  9. We're so glad you all love Sophie's post, we're dead proud of her, what a remarkable young lady she truly is. LYYB x

  10. My mum also suffers from Fibromyalgia and was only recently diagnosed with it after probably 10-20 years. I feel for you as I know how much it affects her life on a daily basis and admire you for how you have lived through it and learned not only to deal with it, but to accept it as part of your life and your person :)