Like being in a coffin, only you’re still breathing

Fibromyalgia hates me having fun. It hates me whether I have fun or not, though, so I do have fun to spite it, knowing it’s a spiteful illness and will wreak a terrible revenge but thinking, I don’t care, it won’t stop me. I can do this. To Hell with it, which is where it belongs.

And then comes the hit, the smack that floors me. I want to die, then. Or rather, I get so exhausted I don’t care if death comes to put me down forever because anything is acceptable to me, to get some real rest that doesn’t just pause the exhaustion only for it to pick up where it left off a little later. Eternal rest does sound better sometimes than being so weak I can’t even get up to go get a drink or pee.

It shocks people who don’t understand, which is most everyone, including everyone I care about, to hear me talk so blasé about death, coming as such talk often does after I’ve been the life and soul of social gatherings where I’ve played ‘let’s pretend I’m just like everyone else when it comes to energy and the ability to move’. And people mistake my talk of death as indicative of depression. Oh, you’re depressed. You just need a pill every day and you’ll be able to fly, leap tall buildings and have a relationship. You can be a real person!

coffin_illness

I don’t suffer from depression. I suffer from my strong desire to live and be free being trampled on; from money being a constant worry when I cannot do a 9 to 5 and yet am persecuted by government every now and then, with the DWP indulging in a little light torture to test me, make sure I’m not building empires out of the loose change they throw my way to live off; from the knowledge that I, a strong and loving person, am made weak and feel alone and unloveable, untouchable. Really, nobody understands and I don’t like to whinge, least of all to the unsympathetic. The ones who understand what it’s like to live with fibro – because they, too, have fibro – know it’s like a coffin, only you’re still breathing in there.

Take your pills and swallow them yourself. Me, I just want to not be in pain and so lacking in energy I can’t even prepare and cook food, so I go hungry until I can move a little. Of course some fibro sufferers are depressed. We have reason to be. Me, I get down for reasons that aren’t to do with mood disorders – two, primarily – pain and fatigue. A pill to elevate the mood is no treatment for either of those. When not in pain and not fatigued, I’m happy.

I love to dance, knowing within a day of it I’ll find putting one foot in front of another to be as difficult as climbing three mountains. But I won’t let fibro stop me dancing and so I am forced to pay a high price for my defiance. Take away my ability to socialise, though, to connect, to be touched without it hurting and you might as well bury me.

Other single people just hope to meet a nice person. What a simple desire! Me, I hope to meet a nice person who won’t think me lazy or awkward or annoying for being the party animal one day, a hibernating mess of pain the next. And I think, while others meet people they like and talk hobbies and interests and make plans, I have to try and explain a life-inhibiting chronic health condition while hoping the other person doesn’t run away before I finish my sentence. My optimism tells me there is someone out there in the world who is exceptional and will love me as I am. My eyes and ears, they observe and report and they tell me most people can’t be said to be that kind of exceptional. They’ll often take the emotional baggage of a partner but chronic illness is a weight they’ve no patience with.

There’s all this shit going on and there are people who see me post on my social media about having fun on good days, defiant celebratory days, knowing I’ve got the emblematic Blue Badge for my car, and they think me a con. Nothing wrong with him. Why would I want to show anyone, other than true friends, those who love me unconditionally, when I’m a shipwreck? And invisible disabilities don’t get much understanding from the most ignorant in our society. If they can’t see it, it’s not real.

I have all these thoughts and feelings every day and every day I get up and do what I can to live, smile through it all, ignore and defy the underlying despair that tries and fails to change who I am for the worse. But yes, I have grown very, very tired of being alone on a metaphorical island several times a week.

My achievements are many, writing books and looking after my elderly mum, doing housework and caring for my animals. I am blessed to have some amazing friends. I am glad to be what boring people call ‘alternative’ in my lifestyle and ways of thinking. I like me. In fact, I love me. I don’t hate anyone. I only hate this illness and don’t even feel that strongly about it unless it’s hammering at me and knocking me to the ground, as it is today and why I was prompted to write this for my blog.

I don’t expect understanding, which is good because I’d be disappointed if I did. I do hope my honesty, though, like my latest book, contributes to a better understanding generally. I wouldn’t hold my breath for it but feel I have to try.

myfibromyalgia book cover

 

 

Andrew’s latest book, myfibromyalgia: one man’s experience of living with chronic illness, is out now in all Amazon store territories the world over. The ebook is £5.99 and the paperback £8.99. UK Amazon link.

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