Worn down by an invisible illness

It is unusual for me to write 2 posts in one day, but I didn’t want to load up the previous positive one with the downer of the suffering of my Fibromyalgia. It is getting tougher and tougher.

I read an excellent piece by a woman on a website a few days ago, where she was talking about how difficult it is to live life with Fibromyalgia. It was really well put, but right now, for the life of me, I can’t find where the page is, or what it was called. That’s the fibromyalgia right there. Bloody makes your memory shot to pieces.

Anyhow, she was talking about how, even when you have a good spell, it’s not good by the normal sense, it’s just less bad than a bad spell. It is exhausting having this illness.

Most days, you wake up tired. You might have had a great 10 hours, or even 12 hours sleep, but you are exhausted. Some nights, if you are lucky, you sleep all night without waking at all. Other nights, you toss and turn, either you just can’t switch off, or you just can’t seem to find a way to lie in bed without pain. For me, it’s about 3/4 of the time that sleep is restless.

Then, every day, you have to summon out of somewhere the strength to do anything. You have stuff to do, but most of the time it is just so much effort to do anything that you feel like you are running 20km. Trust me, I do actually know what that feels like, I was an endurance runner in my youth, and have run that distance several times. Most of the time, I push myself through the day, even though all I feel like doing is sleeping, and also, although I don’t, you feel like taking any drug that will numb your body. I have in the distant past, and before Jack came on the scene, smoked marijuana, and it is virtually the only thing I know of that actually gives relief of any sort to chronic pain. The pills, like Tramadol and Panadiene Forte take the edge off the pain, to just bearable, but they don’t give the relief that pot does. I do have to say though, after I had a bad flare up a couple of years ago, I was given Oxycodone, and I pretty much didn’t feel anything for the 2 or 3 hours it lasted !!!

So every single day, you seem to get more and more exhausted, the pain just wears every single bit of positivity out of you, and somehow you have to stay positive. Also, the apparent experts say that you need to get exercise, and guess what, I get more than most, but it is a struggle, and no, it’s doesn’t improve it. It’s all a big myth that the experts spin. I think you should attempt to get as much exercise as you can, but it truly is a superhuman effort for anyone suffering from Fibromyalgia.

I consider myself lucky to some extent, as I am not the only person in the house with Fibromyalgia, my mother has it too. She has said that her worst flare up, which saw her needing to go to hospital, was infinitely worse than child birth. She’s only had to go to hospital once with a flare up so far, where all the medications the doctor gives you doesn’t reduce the pain, I’ve gone through that about a dozen times now, and the only thing that reduces it is the one thing they hate giving you, and won’t give you a prescription for in Australia, Oxycodone.  Well, they won’t give you the thing that does work that is less harmful, but that is because of it’s irrational illegality at the moment still here.

The multitude of other things that are symptoms just make everything seem too much most of the time, if it’s not the constant pain and fatigue, it throws nausea, IBS, completely stuffed memory (which if you have a long spell of it you start to feel like you are losing your mind and start to worry you have Alzheimer’s), and, well all sorts of other small things that you just don’t realise are related but generally stuff you up. Imagine having something that makes you not able to regulate your temperature well, well Fibromyalgia does that at times. Imagine having a bout of skin so sensitive that it is painful to even wear anything, sit on anything, be touched by anyone or anything, that’s what fibromyalgia does as well. It really is, no way to put it nicely, fucked up.

I honestly don’t know how I don’t just curl up in a ball and give up.

I was talking with my mum this afternoon, as she has had a rough day with it today, and we were talking about a friend that has it too, who basically will bail out on things at the last minute, because she just can’t deal with it. Mum reckons that I must be made of tougher stuff, because she seems to think I have it worse than the friend. I said to her that although it is tough to deal with most of the time now for me, I, at this point, have the viewpoint that I can’t stop life for this. Every day is a struggle, it hurts, I am half asleep basically, but I just can’t let myself give up on life. In all honesty, I really don’t know how I do  it. I think it is a mind game I play with myself, my brother says I am an all or nothing person, so if I do something, I don’t stop until it’s done, I over do it. But, when he said that to me over a Christmas, I said to him, that if I don’t have that attitude, then I just couldn’t do anything, and I may as well end everything now.

I do feel sorry for myself, but try not to let that rule everything. I have the condition, but the condition isn’t me. I don’t know why I have this condition, I don’t know why fate has dealt me this hand, but I have to keep going. I guess one day I may not be able to, I feel like that now, but right now, I am going to try and still have a life, regardless of how hard it is to have one.

Andy.

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