FibroMYalgia with Lyndsey

FIBROMYALGIA - what is it? Well, it's the new fascinating, mysterious, regularly ignored and misdiagnosed disability (and it’s only recently been accepted as an actual disability) of the 21st century, even Lady Gaga has it if you didn’t know! What it actually is however, is a massive pain up the backside and if it was a person I would actually kick the living crap out of it (as long it was on a good day and I was able to walk and focus properly of course) for making me feel like I do. I have been through all the emotions with this condition in the beginning, I utterly despised it and hated it relentlessly for slowing me down, I felt like it totally stopped my life. It ground me so far down for a long time I didn’t know who I actually was a person anymore.

I should really introduce myself. Hello, my name is Lyndsey and I have Fibromyalgia, this is what I say to nearly everyone I meet (and yes, it is irritating). Why do I do it? I mean, I don't with every single person because then people would think I’m just plain weird. A new work colleague or people I’m going to spend a lot of time with - I do it then because we as a society tend to judge, don't we? Please don’t say ‘well I don’t!’ because we do. I know I’ve judged and been judged, more often than not.

With this condition I have good and bad days, on the good days, I can look totally normal but on my bad days, I may walk, talk or even act almost like I'm drunk or on drugs and this is solely due to the fibro. I have been deemed as ‘thick’ before (dumb if you’re not from the north) because I can’t even string a sentence together. I’ve been laughed at because I couldn’t walk straight and I have been accused of being drunk on numerous occasions and even though it’s said in jest, it still makes me worried that people who don't know me may always think that way - but once I get the chance to actually explain and how fibro affects me, people around often stop noticing the little quirks. As weird as it may sound, that makes me feel more comfortable, in a way. I am getting a lot more confident now though and the way I see it is if people still wish to label me, then it's purely down to their own ignorance.

For a long time I lived just going through the motions of the normal day to day, it controlled my thoughts and emotions, took my memories away from me with the relentless fibro fog and has made me the largest I have ever been. It honestly stripped my confidence away from me layer by layer, made me weak and made me doubt my own physicality and mostly made me scared for my future. In my head it was telling me I couldn't walk my dogs and even stopped me from enjoying time with my kids because I felt I couldn’t run after them in case I fell. How is that any way to live?

When I was first diagnosed I didn't have a clue what it was, my first response was to Google it and I know everyone says ‘don’t do that you’ll only hear horror stories’ but with fibro I couldn’t because of how little information there was! Well there wasn’t back 11 years ago, the only information I found was medical descriptions detailing the touch points of pain and professionals who had the opinion that the condition is all in the brain and how we as individuals exaggerate or make up symptoms! That’s where they’re wrong, it’s an invisible condition and unless you suffer like myself it's hard to understand, but we are all different, we all feel the condition differently. Some suffer from fibro fog, intense body pain, the list is endless.

But honestly, there simply is not enough information or guidance out there on this condition and this is the main reason I want to put my experience out there of how I did and didn’t deal with it because I really think it will help show others how it feels. I want people to know that yes, random pains are part of it, feeling spaced out or utterly exhausted to point that you could fall asleep standing up or sitting on the toilet is perfectly normal I want people to understand you are normal feeling this way and it's all part of living every day with Fibro, because for me in the beginning I really struggled, I still do occasionally but every day’s a school day and even now I still feel like a student. 

For me when I look back, what I should have done is accommodate the condition straight away. I should have made all the necessary life changes required to live with it but I didn’t, I fought it daily which made the condition spiral out of control and made my life utter hell. It made me tense, anxious but even more determined that I wasn’t going to slow down, I was NOT going to be disabled, I marched on paying no attention to the condition even when my body was screaming at me. I burned out constantly, every inch of me was in agony, I couldn't concentrate, couldn't sleep, barely functioned, relied more and more on medication to help with the pain. I got to the point that I took whatever the doctor prescribed with no thought about the side effects and allowed the condition to take over my life. I got to the point where I’d get out of bed, put my fake face on and battle against what was slowly killing me. My head ached, my memory lacked, even my eyesight was an issue, IBS raged on and I was ultimately on a path of self destruction.

I ate everything that was wrong for me, a regular lunch was crisp sandwiches (what I would see as lazy food) - thick white sliced bread with lashings of Lurpak butter, Walkers crisps and I wasn’t picky with the flavour, I drank fizzy pop, lucozade, gallons of tea, lattes and NO WATER EVER. My weight gain was a massive result of all of this, the bigger I became the more pressure it put on my body, my joints ached constantly, the more rubbish I put into my system the more my IBS raged, I ate everything I loved to make me feel better and nothing was in moderation - cakes, pastries, ice cream and fried food literally everything that was bad for me and made me feel ill, I was so bloated I looked pregnant. All of this started putting pressure on every organ inside me, on my spine (and having scoliosis didn't help) my hips, my pelvis - I was a total mess - but I was doing it all to myself.

Work was another thing, I rarely stopped working even. I did any extra hours I was asked to do (as long as I could still manage the school run), I was manic about my house it had to be clean top to bottom, all the housework had to be done (even though to me it never looked clean), meals had to be planned in advance. I put so much ridiculous pressure on myself. I had constant heartburn and reflux caused by my unsuitable diet and lifestyle, my anxiety levels were through the roof and my energy was totally depleted due to my sleeping pattern (or lack thereof). I couldn’t switch off, my mind was constantly ticking over. Constantly planning, making mental notes to remember and then getting mad at myself because the following day I’d totally forget them, never ending lists with absolutely no time to complete them, the condition was totally out of my control and I now found myself addicted to the medication I had been given. I was in denial. I thought I was winning but the fact of the matter was, I was losing. I was slowly killing myself and I needed to get a grip, slow down, listen to my body and take proper control. 

I went on though, totally ignoring everything, constantly fighting it and ignoring all the warning signs. The pivotal moment though, a trip to London and a photo, yes a photo that was taken of me sitting on the edge of the bed in a pair of linen trousers (extra stretch size 22) and a bra doing my hair. I choose to never look at myself in a full length mirror but when I looked at myself in that photo I was mortified, utterly devastated, the best way I can describe it is I looked like Jabba the Hutt from Star Wars (no joke I really did) and that was it. I went into the bathroom, cried, washed my face, put that fake happiness back on and went back out as though everything was ok. Inside though I was dying, I hated myself even more than ever and even though I never had huge confidence in how I look I couldn’t understand how could I let myself get like this. I knew that no one forced me or helped me get to this point, it was all self inflicted but seeing how I now looked disgusted me, but this is where I realised, something needs to change.