FROM THE DRAFT POSTS FILE – 6/30/14
Waiting since June 30, 2014:
You fear getting worse. Because you can. Get worse.
And when writing is a marginal activity already, getting worse can be the snowflake that sets off the avalanche.
When I was young and able – a status not all people who are disabled can claim – I thought I could handle ANYTHING that Life tossed at me.
I was me – I’d figure out a way. Somehow. Eventually. And I always seemed to. I had a brain!
Now that the only way out is death – which is, I hope, still not close – I am facing the trauma of becoming even more disabled, more dependent on other people, less able to care for myself.
Frankly, it scares the hell out of me.
I fear losing even more of my mind. Now, if the planets are aligned, and I have done everything correctly, I get to live in the simulacrum of the mind I used to have – quick-witted and opinionated and so-often right – for at least a little while every day, or to feel it there, right beyond my fingertips if I take that nap, stop leaving the house so many times in a week, get to bed early: it’s there, it hasn’t gone completely, and I had it yesterday, maybe today, perhaps tomorrow.
I have already told my husband to put me in an Alzheimer’s/dementia facility if my mind goes – I don’t want his tender care, watching over me, stuck with that version of me. My mother and my grandmother sank into that hole, and it isn’t pretty – what if I got CFS because I am somehow genetically weak? And have already passed it on to my kids – the older two without knowing, and the third, the girl, after I was sick?
That way lies madness.
We all have SOMETHING wrong with us.
And it’s only going to get WORSE.
The happy seniors hiking in the mountains are in the minority: statistics tell me that if I live to 85 (I planned to live to 115), my chances of dementia are 50%.
On top of this unhappy state of affairs (and I have to my credit only one thing: I’ve never asked Why me, Lord?), I have been dealing, for a number of years, with the inability to walk properly – and here I thought it was ‘ONE disability to a customer.’ And it’s getting worse.
Actually, no – if part of you doesn’t work perfectly, if part of you is ‘disabled’ – it has a tendency to put other parts of you at bigger strain, and to make you more likely to get something else. Plus the statistics are exactly the same for you for anything unrelated to your disability as it is for other people: there’s no reason to think having ‘gotten’ your disability, you can now breathe free: people with one thing can be gifted with another unrelated one just fine (CFS and back problems do not usually go together, though possibly less exercise meant less fitness, which led to more susceptibility to back problems, or earlier, or…).
So why do I write about this potentially depressing subject?
You know the answer: because I’m that weird thing called a writer, and that’s how I get my jollies. No, really, I’m compelled to write down – anything that floats through my head. To get it out of there, of course, out where I can beat it with a stick (if you do that while it’s IN your head, there are problems).
There. I feel a bit better. Thanks. Thought you might like to know.
PS I speak only for myself – THAT I’ve learned. Finally.
PPS Going for that delayed nap I should have taken much earlier, but I couldn’t make the decision to, because, well, I’m over the age of consent and resent like heck that my mind needs frequent naps to work at all. Plus – oh, joy – the sheets finally came out of the dryer, and I always nap better on clean sheets. (Note to self – try to remember that, will you?)
PPPS Relentlessly dragging myself back from the brink.
2018: Still here, still writing.
Stubborn cuss.
And note I finally published in late 2015.
liebjabberings 
I’m always afraid of flares. Like the other night, slept on the wrong pillows, woke up with a stiff neck, worried all damn day it’s the beginning of a flare. And of what? Lymph nodes? Musculature? Throat? Ears? Ugh. I’ve been ‘well’ for quite a while now, which you’d think would be comforting, but it’s not, quite the opposite. I was clear in telling my employer I have RA, and clear in saying they’ll seldom notice, but — well you know. I had 28 bad days last year and 12 really bad/bed days but I was only out of work 2 days. I took no steroids and no antibiotics. That’s a record for me.
This future we plan, there are no promises of it, only hopes.
I can’t remember, but I think you watched Wallander, too? Did the end of that show scare the mess out of you, too? Cause I was so traumatized.
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Didn’t know you have RA – that’s a big one to carry around. I have a good friend with it, and she is on the same dance: do I take the meds? Will they help? Are the side effects worth it?…
Hope they can find a definitive treatment for it in your immediate future.
I live with a bit of it – mostly, Will it get/is it getting worse?
I did watch Wallender, and was sad at the end, too. But wasn’t that Alzheimer’s Disease? Knowing that has got to be scary. Didn’t his dad have it, too? And kept painting the same thing?
I hope Bill Gate’s initiative that he’s throwing money at will help with AD. Wish I could get some famous person with money more interested in ME/CFS. Jen Brea’s Unrest – up for a possible Oscar in the documentary category – will give us more exposure. I try, with Kary’s story.
But the history of not being believed that it’s even real, and having research money diverted, is long and infuriating and not over.
I’d like to see it deleted from the Earth, even if the diagnosis and treatment are only effective for those who haven’t had it too long, as some people claim. (What the heck do they know when they can’t even say what causes it, and can’t identify it except by exclusion?)
Soldier on! My respects.
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It was early onset Alzheimer’s in Wallender. His dad had it as well. It shook me somethin fierce. I felt like he’d just gotten to live, and his mind was snatched from him. Of course, that’s good writing, but gah.
I have mild RA and have had long periods of time without serious inflammation. I don’t know if you’ve ever read the articles about what brings on auto-immune diseases, but I’m guessing you have. I’m in the category with the people who had scarlet fever, chicken pox (TWICE), mono, mouth sores, teeth that don’t match my level of hygiene — all before 15, which is when the pain and neuropathy came. I seldom talk about it, for reasons I’m sure you understand. My version of wellness is someone else’s version of sick, yet there are many more people who would like to be as well as I. I am grateful. most days.
Believability aside, we are legion, we spooners, and at least we can support one another, regardless of severity.
I avoid meds, like you, I’m too sensitive for most of them.
My first encounter with CFS was a friend in high school. Since then, I’ve had several friends who started with a CFS diagnosis and ended up with me, or Lupus, or Sjorgen’s, Lyme’s — lots of similarities.
Personally, I know kids are being tested, diagnosed, and treated — so perhaps the 9 year olds of today are the answer to whether it can be stopped if caught early enough.
On one hand, I can understand wanting to keep your husband from the pain of double loss. On the other, who can you trust to care for you if you lose your mind? Fragile. It’s a fragile situation. May you never need to x
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Wallender saw his dad lose his mind – and the writers (the original one, too?) let the dad sacrifice his life to keep the son safe, IIRC. At the end, Wallender just basically went off into the sunset – retired, found care somehow, stopped detecting.
That happens in life. It was believable in fiction for that reason.
Since they don’t know what causes CFS. it could be anything – and inflammation (a rather on-specific term, if you ask me) is one of the causes put forth – but no one has tied the end together to prove anything. We’ll see – if they ever figure us out.
I hope, like AIDS, it gets a cause and a treatment. But it seems that almost every day someone is saying they have found ‘the’ cause of CFS – and their treatment is the one which will fix it – but no proof, no clinical trials, no drugs have made it through the gauntlet, and the amount spent on us is less than on male pattern baldness!
Meanwhile, we try to survive in a world with no help except from quacks. Some people get their symptoms reasonably well taken care of, but there is nothing for fatigue or reliable for brain fog or pain.
Boggles the mind.
We’ll see – but so many other things have been pinned down to a bacterium or a virus or a prion.
Fragile, yup. But I can wait until they find a fix, or try to keep moving until they do. I have stories to write.
I am tired, more than I’ve been in a while. So I double down on the things I know help, like rest and minor painkillers (in addition to the Celebrex) and exercise (a tiny bit – and I will ask the cardiologist to PROVE it’s helping, because it increases the pain quite a bit).
I don’t have it nearly as bad as some of my online friends, but I leave the house as little as possible.
Eh – you do what you can and ignore the rest, or you go nuts.
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The most important part of this post comes almost at the end:
“2018: Still here, still writing.”
There are people who are in perfect healthy who can’t even boast to “still writing”, so already you’re ahead of much of the game. Just keep doing what you can at the speed you can do it at. You’ll get there.
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Thanks for the encouragement – it really helps, especially when, as you know, you’re writing something long and complex.
You love it, but the praise is far in the future, and no one will know what you went through to produce it. No one – except for people like me.
Keep writing. You’re doing it right.
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Having just weathered five planet-buster migraines in six days, my mortality has been shoved in my face, yet again … but we are, if nothing else, bloody stubborn … death will just have to wait its turn!
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I am not good at anything when my head hurts. My sympathies. But we’re tough, right?
You’ll appreciate this: me, waiting for husband to see the eye surgeon today, sitting in the waiting room with earplugs and hearing protection headgear on – because I asked nicely last time if they could turn off EITHER the loudly playing musical background beter suited for a gym that the office ladies were listening to OR the TV they had blating at the patients. They said NO.
We were there for over an hour, just sitting with that blaring. I can’t think at all under those conditions.
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One or the other, is manageable but both!!! They probably think it’s ‘entertaining’ because heaven forbid anyone should be able to sit comfortably in silence. Idiots!
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Usually people respond to a polite request. Someone let me sit in another room, and there I only had the pounding gym ‘music.’ Especially when the waiting room is small, what’s wrong with silence? I get more old curmudgeony daily.
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I can relate both on the walking front and on the past self being more ” quick-witted and opinionated and so-often right.” Except that when I was more aware i was also an obnoxious teenager. I’ve been dealing with a Swiss cheese mind for a long time. It’s disintegration has been so slow, I’m not entirely sure just how much I’ve lost. I’m afraid to find out.
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We do age, y’know. Speed loss is compensated for by increased wisdom. I hope.
It’s not necessarily disintegration; it might be Full-Brain Syndrome. To put new stuff in, we have to push some of the old stuff aside into backup storage, where it’s harder to retrieve.
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On your worst day, I’d put your brain up against most people’s brains on their BEST day. I am SO looking forward to Book 2, and meanwhile, I look forward to your posts.
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You are a love, Marian. I wasn’t fishing for compliments. Honest!
I’m looking forward to Book 2, too. there is an unbelievable satisfaction from finally finding out, for each scene, exactly HOW it happened. The details matter to me, and the structural outline, while necessary and satisfying in its own way, doesn’t go far enough.
Life seems to be accelerating, for someone who almost never gets out!
But the razor blades in my hips and lower back are becalmed – I can only conclude I’ve become allergic to peanuts. Weird.
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I won’t insult you by suggesting ‘natural’ therapies that have probably already failed, but I will insist on some positivity. You have a book inside your head that I am dying to read. I know it will be a bright, shiny thing because I read the first one.
I know you must feel frustrated that you don’t have the energy to get it out faster…but you’re stubborn so it will come out eventually. That is such a good thing. You are so not ready for the back door. 🙂
-huge hugs-
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Thanks, dear. Support MOST appreciated in some of the dark down spots.
As I said, stubborn. Or persistent. Or whatever you want to call it.
And it is coming out, slowly but surely, and I really like this part of the story.
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There. I knew it. -big hugs-
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