Tuesday, 20 May 2014

Fibromyalgia; My Story

I've been promising you all for a while now that I would talk about my health issue, but it's such a giant task I've never really known where to start but since it has been the main cause of me not posting the last two weeks, I thought this would be the ideal time for me to talk about it.


Have you ever had a really bad cold or flu?  Of course you have, everyone gets those right!  Do you remember how exhausted you felt, the lack of energy, feeling so tired and lifeless you can barely move? Well imagine feeling like that nearly all the time!  That's a very small insight into how someone with Fibromyalgia feels on a daily basis. . .


My Story:
I first started feeling unwell back in my final years of school, I got headaches all the time, I would start to feel tired and worn out long before my friends when doing any physical activities and my muscles would ache.  I lost count of the amount of times I had to go and see the school doctor, only to be constantly told the same things; we can't find anything wrong with you apart from being a little anemic!
It wasn't until my last year of college that I really started to realise something wasn't right, I was doing Performing Arts back then and loved it but every evening I would fall asleep on the bus on the way home, several times I'd wake up and to realise I'd missed my stop!
 I thought it was just the over-exertion, that maybe all the running around and physical activity was just too much for me or maybe I was just unfit but that didn't explain the headaches or other niggly pains I had.  The following year I signed up to do another bunch of classes, this time in English Lit, Media Studies and Drama, but after only 2 months I was struggling.  I was due to take exams in the November and I knew there was no way I'd pass them because I'd been out of class so much feeling ill, so after discussing it with the tutors, we all thought it would be best if I left.



Over the following year, I struggled even more, I couldn't keep down a job and even weekend jobs I found difficult.  Getting up early was a nightmare and for several days after work I'd be completely shattered.  I saw the doctor all the time but all I managed to find out was that I had Anemia again, but I knew that wasn't the answer, the symptoms I was experiencing were worse than before.
I started seeing a specialist at my local hospital who ran many different tests but still couldn't help and it wasn't until I saw a locum doctor by chance one time, that I was finally told "Oh you have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) it's here in your notes, didn't you know!" And of course I didn't, apparently it had been in my notes for some time but I'd never been told by my own doctor!

Another couple of years later, after trying to carry on living a 'normal' life, my symptoms just kept getting worse and so I was referred to see yet another specialist, this time at an ME clinic half an hour from me.  After a tone of questions about every aspect of my life, how I coped physically with my daily chores and an overall examination, I was then finally diagnosed with Fibromyalgia.  I was told that at one point I did have ME but as it was never dealt with in the correct way, it had progressed in to this.  I was told that the main difference between the two conditions was that (if dealt with and treated early), ME was a short-term condition, some people have it for only a few months, others for a few years but with Fibromyalgia (also known as Fibro or FMS), it is long-term only, possibly for life.
It was very hard to hear this and even now, nearly 8 years later I still struggle with that knowledge but somehow I've plodded on and I'm still here, I'm still standing (sometimes lol) and somehow I plod on and I manage.

I've never had much help from my doctors or specialist other than more useless tests and being 'kept an eye on'!  I've even asked them if they can tell me about help groups or people I could talk to about it but just got told, "Oh you'll just have to look online, we don't know of anywhere"!!
So it's generally been down to me to find my own ways of coping and managing my 'condition' and even though I do still struggle at times, at least I now have some of the answers I was looking for.

T
he array of symptoms I get is as long as my arm; ranging from aching and paining muscles and joints, headaches, nausea, digestive problems, tiredness, fatigue, weight loss, dizziness, confusion, frustration and brain fog, numbness, an extreme lack of energy, sudden random pains, Costochondritis, restless legs, food allergies or sensitivities, immediate forgetfulness, sensitivity to changes in weather, seasons and even slight changes in temperature, anxiety and depression, skin so sensitive I can feel a loose hair on me, stress also plays a big factor and any over exertion of physical or mental activity. . . .
They're pretty much the main ones for me but of course every Fibro sufferer is different, we don't all get the same symptoms and effects.  And honestly, no I don't get all of these symptoms all of the time but, I do get a good few of them quite a bit of the time and I never know which ones I'm going to get or when, so that certainly keeps you on your toes!
Every-so-often, especially if I've been going through a very stressful time or have been really over doing things (which I have with both lately), I then get 'flare ups', that's basically when you get all your worst symptoms, in the most full on way and all at once and it pretty much leaves you feeling like you've been run over. . . several times. . . by something big!!


I knew several years ago that I was never going to manage to do a full time 9-5 job and so I try to do a little work from home, that way I get to choose my own hours and rest when I need to, and of course no early mornings :-)


I always try to plan my activities, like household chores for instants, but of course there are still times when unplanned jobs happens and all at once, just to taunt me!
Getting up out of bed is one of the worst things for me, I sleep heavily and it takes me quite a good while to 'pull round' and feel properly awake.


Other examples would be things like washing my hair, vacuuming or walking which can all add to warring me out and cause pain and discomfort, especially at my worst times.  Thankfully though, the majority of the time, even though I get these various symptoms, they don't cause me too much of a problem as I'm so used to having them, especially on my good days.



Of course I get my 'good days' too which are great and as long as I take things easy, no my limits and try to stick to them and take regular breaks, I pretty much manage to get through!  It also helps a great deal doing things that calm me, like listening to music or watching a movie/YouTube and having people in my life that understand and don't expect too much of me is one of the biggest and best things of all and I'm so grateful to have several of those people around me (I hope you know who you are)!
Meeting anyone new though can be very difficult and worrying, trying to explain the condition to them and make them understand.  Especially as I don't 'look' ill, people often end up thinking I'm putting it on or I'm just lazy which sadly is a common misconception with a condition like this, hence the nickname 'the invisible illness'!


I've also met lots of different people with this condition and we've all agreed how nice it is to be able to talk to someone who really truly knows what it's like and it's such a comfort knowing you're not suffering with all these strange symptoms on your own, other people get them too!


So basically, Fibromyalgia for me means that; I can do anything you can do, but it'll take me twice as long and I'll get twice as worn out doing it!

I hope this post gives you a small incite in to my condition and helps you to understand it.  There's a tone of information online about this condition and even though I've put a few links at the bottom, please feel free to look at any other sites you wish.  Also please feel free to leave me any comments, do you have this condition or know someone else that does?  Or you can leave me any questions, I'm happy to try and answer any you may have.


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1 comment:

  1. Indeed, this is what fibromyalgia is all about. It is an invisible disability that has a very negative effect on living.
    But we get through somehow, by managing activities.

    ReplyDelete

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