“It Won’t Happen To Me!”
I don’t really know how to explain my thoughts right now. Even though I am in a really bad place with my health I still can’t seem to let go of the ‘Help Others’ mentality…perhaps it’s in my genes or maybe it’s something that comes with having this illness.
All I can say to you is I just don’t want others to go down the same route as me.
You see, I’ve spent the last decade and a half with ME. It’s been my enemy and it’s been my torturer.
It’s also been kind to me for long periods…perhaps it had it’s focus elsewhere and forgot that it enjoyed tormenting me. So during that time period I’ve had good spells where honestly I felt pretty normal. I could walk, socialise, even do some exercise…normal life things that we all took for granted pre illness. I’d always overdo it and crash and I’d always recover within a few weeks.
But it’s changed now.
This year I have to finally realise that ME isn’t going away. My baseline of functioning is now so low and steadily so, that I have to finally admit to being severely affected.
Yes…Carole who could cut her grass, walk around a car boot sale…climb a tiny portion of Arthur’s Seat in Edinburgh…that very same Carole now can’t do any of those things nor hope to ever again. At least that’s the way I feel right now.
What put me here? I can’t really say. Apart from the fact I seem to have always boomed and busted with this illness and have always ‘abused’ the energy I am given doing all the things I missed out on during the relapses. Sometimes they are fun things. Sometimes they are stressful things that can’t be avoided and other times they’re day to day things that have built up and there’s no-one else to do them.
Now I’m in a state that seems to say …”You’re not getting out of this one Carole!”
So my message to you lovely folk out there with ME…the ones still able to live a semi normal life.
I want to say “Live for today” and “Grasp life while you can” and that old nugget “Never put off til tomorrow what you can do today”
BUT…I’m not saying those things…because quite frankly you’ll end up like me…always thinking the severe end of this illness won’t get you. A bit like those smokers who think cancer won’t get them and invariably die young wondering “Why?”
What I want to say is live life but know your limitations.
Reach out for help with the things you want to do but can’t.
Take pleasure in smaller things…don’t try to maintain the lifestyle you found easy pre ME…it just doesn’t work and it doesn’t help in the long term.
You might not feel it in the first few years…or even the first decade.
You’ll think “This is as bad as it gets for me with ME and I always recover” but believe me…it does get worse.
It might be subtle at first…it might creep up on you unnoticed like that extra weight from always overindulging. You might not realise that your energy/stamina/functioning baseline is getting lower and lower. But it does and all of a sudden you end up in this place where I am now and where hundreds of us are.
Ones who have issued this warning before I did I’m sure.
Except I didn’t hear. Except I didn’t listen. And when I did I didn’t think it could happen to me.
And let me whisper another little truth to you…I still don’t believe it. I’m saying all this to you right now and hoping you’ll listen but deep down in my heart I’m dreaming of what I’ll do when this relapse ends.
I suppose that’s a coping mechanism but one I really need to address because ‘next time’ just might not come.