Sunday 12 May 2013

Fibromyalgia Awareness Day

Hi everyone,

I hope people with these conditions aren't having too painful a day today. Although I may not suffer from as much pain as some of you, I can definitely relate to how it feels to have the pain all day every day; whether at a constant or fluctuating severity.

I was trying to think about how I should sort of mark this day. Should I flood you all with posts shared on Facebook? Should I retweet the hell out of Twitter, erm, tweets? I've probably been doing enough of that already recently.  I even thought about getting all creative and writing a poem. Hmm, it's been a while since I've written anything that wasn't just a rant or a ramble so I'm a bit rusty I'm afraid!

Instead I thought I should just talk about what the day means to me, why I think it is important to be aware of this condition (for professionals and non professionals alike) and even try to explain how I personally feel. Ok! So here goes:


I'd not even heard of the condition Fibromyalgia up until just before I'd been diagnosed with it, and up until that time I'd been told that I 'probably' have M.E/CFS (although doctors never wanted to really diagnose it even after lots and lots of blood tests). I looked up Fibro and found these bits of information: *

  • (From NHS Choices) Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition which causes pain all over the body. Fibromyalgia has many symptoms, although the main symptom is pain. The symptoms tend to vary from person to person and it is unlikely they will ever disappear completely.
  • Symptoms as told by NHS Choices (Not copied word for word however): 

    • Widespread Pain- can be a combination of aching, burning sensations and sharp stabbing pains.
    • Extreme Sensitivity in the forms of hyperalgesia and/or allodynia (hyperalgesia = when you are extremely sensitive to pain, allodynia = feeling pain from sensations not necessarily seen as painful; such as a light touch)
    • Stiffness - Usually happens first time in the morning or when you've been in the same position for a while.
    • Fatigue - This can vary in severity and can come on quite suddenly
    • Poor Quality Sleep - Alongside problems with sleep you can get what's called 'non-restorative sleep', which is basically not sleeping deeply enough to get a refreshing night's sleep (even if you've technically slept for a sufficient amount of time).
    • Cognitive Problems - This is commonly known as 'fibro fog'. This is where you may get confused easily, forgetful and unable to concentrate. People often say they have trouble finding words or finishing sentences because the word/s just sort of  'go' suddenly. Very frustrating!
Ok, so there are a whole host of other symptoms but I don't just want to copy the whole of a medical page when you can just as easily find it yourself. I want to now talk about what this condition means to 'me'. It's all well and good reading up on the symptoms, theories on causes and 'effective' treatments but, unless you actually have the condition yourself, it's quite hard to gauge just what it's like to live with every single day. Words like pain, fatigue and poor sleep never really do it justice because, on paper, they just don't sound very severe do they?

Well let me tell you, dealing with all the crap is absolute hell.

I could quite easily fill one or two pages with all the symptoms I experience. I get blurry vision, shaking, weakness, anxiety, lack of confidence and this horrible feeling of worthlessness and guilt alongside many many others. 

The pain has got worse for me over the years. I didn't notice it as much as I noticed the dizziness and nausea for the first year or so. It was the exhaustion that indicated I should slow it down a bit and even then I worried that I wasn't trying hard enough. I'd always been such a well person who only ever got short bouts of hayfever or colds. I'm not even that sure if I've ever had the flu that bad if at all. I was in university at the time and couldn't even describe how I felt to the doctor (when I eventually decided I should go see him). 

It really really sucked having to miss lectures and quit cheerleading. Because I couldn't explain it properly (and didn't have a diagnosis) a lot of people didn't understand. Even my boyfriend at the time was telling me I would fail my degree if I kept missing lectures and that I'd have to try harder and stop skiving. I'm not even sure some of the people at cheerleading understood either. I guess it's hard to take someone seriously if they can only tell you a few symptoms which don't even sound that serious. I felt like I'd let the team down and come across as lazy. What I wish they'd known was that I absolutely wanted to push through all the ill feelings to do the stunts and the dances but even getting there was barely possible. I would be no use to them all exhausted and disorientated would I?

Well fast forward through that, I managed to get a 2:2 even though I'd not managed to make a single lecture in 3rd year and did all my exams feeling rough as hell. So yeah, I should be proud of that even if it does mean getting onto postgrad courses will be difficult. 

Ok so right now I'm in a lot of pain all over more days than not (of the aching, pinching, burning, sore, sharp stabbing types), on my good days I have mild to moderate pain throughout the day which can suddenly go worse if I move/turn/sit in a certain way. I feel exhausted all the time and suppose I'm actually used to it now. I feel quite weak most of the time and lose my grip on things easily. It's so strange, I can pick up a pen and somehow manage to fling it across the room because my hand wouldn't grab it properly. Being clumsy is so frustrating. Some days I can quite happily laugh at myself and others it pisses me off because it makes me feel useless. The blurry vision seems so have got worse quite quickly; which is extremely annoying when I'm trying to read something important, and extremely unnerving when I'm trying to navigate a shop. I will very rarely walk round a shop by myself now because it gets so bad. 

I'm not quite sure how I'd phrase it personally but, when trying to explain it, I've read things such as 'Imagine having the flu every single day' or 'Imagine having a migraine every single day'. I guess for me it would be like a combination of these things. I don't think you can really 'get' it unless you get it (literally!) but I appreciate people who actually attempt to understand it, even just a little bit. I can't speak for every single sufferer of Fibromyalgia, but you have no idea how much it means just to hear that someone has read up on the condition, or wants to ask you questions about it so they can understand more, or even just wants to know how you're feeling today. To know that someone spared a thought means a lot. 

The worst thing is silence. I've had people I thought I could really confide in, who'd listen to me like I've listened to them but unfortunately that hasn't been the case. They've asked me how I am and then gone silent when I've told them how I 'really' am. Sometimes just saying 'I'm ok thanks, you?' isn't enough when you really need a friend and don't want to pretend you're fine to be polite, or not cause a fuss. Especially when you're not able to see friends often if at all. 


So, why is it important to be aware of this condition? Well, to get educated about it (especially if someone you know suffers from it), to break the myths about it so barriers to diagnosis can be broken down (it isn't just an old woman's disease you know!) and (very importantly), to help with continuation of vital research into the possible causes, diagnostic criteria and treatments of it. I'm sure there's other reasons, so please comment or tweet me if there's others you want to tell me!

Lastly, I'm no expert, just someone trying to deal with Fibromyalgia and get on in life, but I hope everyone is having a good (or as ok as possible) M.E, CFS and Fibromyalgia Awareness Day. Gentle hugs from me :)

*N.B. Not sure about the legalities with copying and pasting so I'll probably have to cite/reference what I take from other websites tomorrow. Just want to be on the safe side!

No comments:

Post a Comment