hidden illnesses

An Uphill Struggle – On Fibromyalgia.

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I have started several posts with the sentence ‘lately, I’ve been struggling’ and it’s often true.

In fact, I could quite easily start many more posts with that.

Because it’s true, I do struggle, I struggle an awful lot.

Over the past year I have had to really come to terms with the fact that I have a chronic condition and probably will have for the rest of my life.

Whether it is a chronic pain condition, a chronic fatigue syndrome, arthritis, or all of these, I HAVE A CHRONIC HEALTH CONDITION.

There, I’ve said it and it’s written in caps lock so there really is no denying it!

For the time being, we’re calling it fibromyalgia which sort of is a mixture of the three. It also sounds nice and official which makes a change after years of having to say ‘well… I have this back problem… the doctors don’t know what it is…’ which never got taken seriously.

So I thought I’d write an informative post about the condition, so that I get it all out there in the open. I have talked about my condition before, if you want to read them (I promise it’s not too depressing) here are the links: Living With Chronic Pain – Part 1, and Living With Chronic Pain – Part 2.

Recently I read this post from Mary’s blog Fibromy-Awesome. It really touched me. And I just felt I had to write this.

Why did I decide to write this post? Honestly, I absolutely promise that it is not because I need a rant, I’m writing this almost for the opposite reason. Firstly many people have asked me questions about my condition and I’ve never really explained the symptoms I have, secondly I feel like I need to write this – it’s like catharsis, and thirdly I want to accept that my condition has gotten much much worse and then move on. Writing this is me saying, okay I have a condition and it sucks, but my life is about much more than that and I’m moving past it.

The NHS website defines fibromyalgia as such:

‘Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body. 

The name fibromyalgia comes from three Latin words:

  • ‘fibro’ meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
  • ‘my’ meaning muscles
  • ‘algia’ meaning pain

However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:

  • difficulty sleeping
  • headaches
  • irritable bowel syndrome (IBS)
  • muscle stiffness’
What does it all mean in terms of my life? Well here are some of the main symptoms I (and thousands like me) have to contend with every single day:

Pain

Ah my old friend pain. Here is a sad fact about my life, it actually almost makes me cry to think about it, I honestly don’t remember what it feels like to feel no pain. For me, this was the first part of my condition that I experienced. Essentially, I have been in constant pain for the last 3 years and experienced pain everyday for 2 and a half years before that. I wake up in pain and most days this just grows as it goes on. I go to bed in pain. So far, none of the pain killers, anti-inflammatory drugs, etc that I have been given have worked. I have learnt to deal with the pain and if I’m honest I think I will be in pain for the rest of my life. Pain seems to be something the body, or at least my body, can’t adapt to. I can’t ignore it, I can’t get used to it, it never goes away. I feel the pain most acutely in my hips, lower back, upper back, shoulders and neck: I have sharp stabbing, shooting pain up my spine throughout the day. My knees, ankles, arms, wrists and hands are, so far, less affected. The whole of my body constantly aches, many days I struggle to walk much, I can’t stand for any length of time at all, sitting upright causes my back huge amounts of pain and even lying down is no longer comfortable…

Fatigue

This is a newer factor for me, I’ve only really had problems with fatigue for the last year or so, and it’s only become serious since starting university. I struggle to sleep but I am on medication for that which does actually manage to knock me out for the night. But when I wake up, which is really difficult with the drugs (you win some, you lose some), I feel as though I haven’t slept. Most days I can gather up enough energy to go about my daily life, some days I actually feel pretty good and manage to live more normally, but some days I crash. I feel completely drained and exhausted, even lifting my arm feels like excruciating effort and I stay in bed for the entire day. This usually leaves me feeling completely weak, I am unsteady on my feet and last term I even collapsed twice – half from the pain, half from the exhaustion. The fatigue often brings on headaches, I usually have 3 or 4 a week (my pain also causes headaches).

Extreme Sensitivity

This is a difficult one to judge because it’s hard to remember what I experienced 5 years ago and differentiate that from what I experience now to figure out what is caused by my condition. I have become much more sensitive to bright light (e.g. overhead lights, bright sunlight, etc), it hurts my eyes, makes me feel tired and gives me headaches. The same goes with loud(ish) noises. I also experience hyperalgesia which is when you are extremely sensitive to pain, banging my toe or elbow is extremely painful and causes my back to jar. I also get cold very easily and the cold causes my joints to be more painful than usual.

Stiffness

I am, as I already mentioned, extremely stiff in the morning when I wake up and this often carries into the day. It makes sitting in lectures or sitting at my desk extremely painful. The stiffness and pain also causes a lot of tension in my muscles which in turn occasionally causes them to spasm which is where they contract tightly. Sometimes when this happens my knees buckle and I stumble, it’s difficult not to fall over. Lately I have also found that my hands spasm pretty painfully when I am writing by hand or typing. If I’m honest, this particularly worries me.

Cognitive Disturbance

This has in a way been the hardest symptom to deal with. Don’t get me wrong, the pain and the fatigue are awful to deal with, they have taken so much of my life. But this has really really affected my work and that is not easy to deal with, either at Sixth Form or at university. When things are particularly difficult I have trouble remembering even the simplest of facts, I have difficulties concentrating, I get dizzy and struggle with balance, my eye sight blurs slightly and my head spins pretty badly. The strength of my medication really doesn’t help with these issues. These cognitive disturbances get referred to as ‘fibro-fog’ (somewhat patronizing in my opinion) and they make reading difficult which I really hate, they also make working and revising very complicated and sometimes impossible tasks. Combined with my inability to sit at my desk too long from the pain and the exhaustion the fatigue brings, doing my work at university has been incredibly difficult and organisation is hard to keep on top of. I used to be the sort of person who did her work the day it was assigned, was super organised and had everything ‘just so’, as such this has been really difficult and hurtful to deal with.


I really don’t want this post to be just about me, and I certainly am not looking for any sympathy. What I want is to raise awareness about conditions like mine, these so-called ‘hidden illnesses’.

The other day I took the lift to go up two floors in Waterstones. I didn’t have my cane as I was with my mum and I could lean on her arm if I needed. As we got to the second floor there was a couple with a toddler in a pushchair waiting for the lift. My mum went past but then as I went past the guy exclaimed, in that loudly obnoxious voice people use when they’re feeling self-righteous, something like “Oh yeah, because you’re disabled!” and then proceeded to complain to the woman with him. Now to be honest, on that day I was really struggling so, unless one of them had a condition like mine, it would have actually been easier for them to carry the pushchair between them (it’s not like they’re very heavy!) down the two flights of stairs than it would have been for me to climb them. So although I wasn’t particularly upset by the experience, I was a little irritated. What if I had been a cancer sufferer going through chemo, or an AIDS patient, or a cystic fibrosis sufferer, a sufferer of clinical depression, or anything ‘hidden’ like that?

It’s just plain ignorance to act like that and it really made me think that we really shouldn’t judge people, you never know what they are going through behind closed doors.

Anyway, I really hope you have taken something from this post. It took a lot of energy and emotion to write and I feel pretty drained now. But actually, I am proud of myself for pushing through this, I am proud of myself for not giving up, I am proud of myself for what I have achieved.

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Tomorrow is my birthday (yay!) and I promise I will be back with a slightly easier to read and more uplifting post!

Did you learn something from this post?
What are your thoughts on ‘hidden illnesses’?
If you would like to, I’d love for you to share something ‘hidden’ that you struggle with!