OP.. I really do get it.
I don't make a habit of listing everything on SM but..
I have Ehlers Danlos, POTS, cardiomyopathy, left ventricular dysfunction and a leaking mitral valve, hypothyroidism, type 2 insulin resistant yet insulin controlled diabetes, gastroparesis and a bunch of other autonomic function issues, significant nerve damage that means I can't feel bits of me and other bits make me feel like ive tipped boiling water (or ice cold water) down my leg, or yell in pain, joint pain, b12 deficiency... both my shoulders (rotator cuffs) are knackered and now inoperable, gallstones (ditto inoperable)... severe obstructive sleep apnea (awaiting CPAP machine) and we might as well chuck in a mouthful of broken teeth whilst we're at it.
Life is pain, discomfort, and reliance on other people at this point. I can no longer do my own intimate care. I use a power wheelchair, I take a fist full of medication morning and night plus patches and injections on top.
I am scared every day that I will drop down dead, or worse, have an agonising and lengthy heart attack that will terrify the shit out of my OH and .. ill still die.
But... you CANNOT live like that, permanently terrified of what might happen.
If you do... then all the times it doesn't happen, you've missed out on lots of stuff you could have enjoyed.
All of us will die. That is a certainty, and none of us know if our last day on the planet will be today, tomorrow, next week, next year, 10 years from now... none of us.
We could ALL drop dead at any second.
But if that is our all consuming thought, then we won't ever LIVE will we? And frankly if we AREN'T living... well what is the bloody point?
Find other things to focus on - right now whilst posting I am also working (in fact I am copy writing and I am manning a customer support line for an app... and had to go do that in the middle of this post!), I also have FB to look at and a web based PC game to mess with...
So between all THAT.. I simply do not have TIME to think about the fact I could drop dead, I don't have time to moan about how my arse fucking hurts again and theres a pressure sore forming on my bumcrack and how I can't feel my left ankle and my right hip is about to slip again and my rib is doing stabby pains intermittently...
When all the distractions are gone in the evening, I use TV to distract and in and among all that I have the TENS machine on, massage thingy (I have a whole collection of massage thingies and heaty uppy thingies)...
I never EVER sit and just wallow in it, if I did, I would honestly end it, because it would be horrific.
You're not me - you need to find your own way through this, your own coping strategies and distractions. But you do have to live, rather than just exist!
I would rather drop dead whilst doing something (well I'd like it if id finished the thing first!), than drop dead whilst sat about thinking about the things I can't do.