WHAT AM I SUPPOSED TO DO WITH MY TIME?
I apologize to God every day for the time I’ve been given and have wasted.
I’m not a big believer in just letting time float by, which makes this akin to the sin of laziness.
I don’t mind hard work – never have – and always intended to work hard my whole life, to use my time wisely, and to help others: family, friends, community, nation.
I always felt, when I was young, that I could work my way out of any dead end, find a way to proceed from where I was to where I wanted to go.
I trusted that there was a purpose for me, and I tried to discern that purpose. Since I seemed to be able to handle math and science better than my peers, I determined I would be a physicist. After that, the PhD seemed a useful next step – I would do research. There was a paucity of women in hard science, so that must be my goal in life, what I was meant to do, and I enjoyed it a lot of the time, too.
It turned out I liked programming computers, and I preferred doing so with a worthwhile use for all that power: scientific computing in between the experimentalists and the theorists in my chosen field fit perfectly as a home.
Even when I got sick, I found ways to make myself useful, and that gave shape to what was left of my life: kids, husband, home – the energy went there. Instead of spending time and energy getting kids to school at the same time with a lunch, we homeschooled, and the science was poured into projects and fairs, competitions and internships.
As the kids needed me less, I taught myself to write fiction, poured into writing what I could spare.
Healing? Feels like a complete waste of time.
In a week it will be three months since they finally figured out what was wrong and installed the magic third stent in the right place. It’s been longer since the beginning of the whole thing, much longer if you add the three months of coughing that started last Nov. 1.
I am trying hard to be grateful for being alive: while there’s life, there’s hope.
But this status right now, waiting to see if I will even get back to that very basic writing level I had over half a year ago, having days go by without producing anything, week after week after week, feels not like healing, but like waste.
I can force myself to do a few things when they’re critical – but the ones I need to do with a bit of a brain are on the list of things piling up by the day.
And I can’t force myself to write fiction. It is a higher ability which can be encouraged but not ordered, and it had disappeared completely as of over a month ago, with the zombie brain that came from the last, unnecessary, drug: clopidogrel – generic Plavix. I stopped taking it two weeks ago, and it took ten days before I could say it was letting go of its grip.
I’m not back yet. All my schedules and timings are off. It takes me far longer to have the brain click on – and it stays on for a very short time, and then clicks back off.
So I wait, and another day goes by with nothing to show.
Exercise? A joke.
My online CFS friends tell me it can be four months before I will even see the beginning effects of my tiny bit of exercise. The exercise? Eight minutes, three times a week, of deliberately sub-aerobic recumbent rowing motion for arms or legs, in four 2-min. bursts, separated by 4-min. rests. Even I can’t see how that will add up to anything in four months, since I can’t increase it, as I barely tolerate it now. It will be two months in a week.
Without the clopidogrel, there is no huge pain surge after the exercise. But there is also only the slightest hint that I will be able to increase the intensity. I’m grateful for the eight minutes – but it is pitiful.
I do my exercise – missed one day because I got too much walking to be functional later – because it is the one thing I’m doing which the doctor told me to do. I was trying to exercise before I found out one of my arteries (I don’t believe the other stents were necessary) was almost blocked, and it hadn’t been going well, for what now looks like obvious reasons. So I will keep that one up, hope for improvement, and be prepared for it to take a long time.
I haven’t tried a bike ride yet – I could do that before, but I have a residual ‘vertical instability’ feeling from the drugs, and I’m not sure I’m safe yet.
Which still leaves me with 17 hours a day to ‘use’
And during which I’m still tireder than I was before, which makes no sense to me since supposedly I have better blood flow!
I have been bored out of my gourd. I can’t read – that uses energy I haven’t had. I can only watch a bit of TV in the evening – two shows, and I’m tired. From watching the friggin TV! I can’t do useful things – no energy. Though I’ve managed a couple of weeding sessions, sitting on the ground for a couple of hours getting those pesky strawberries and onions out – losing the complete next day because I did too much SITTING. Honestly – it’s appalling.
So what HAVE I been doing?
Writing. The journals for every day since I got out of the hospital now include 62,000 words; and the auxiliary material – drugs, stents, papers – another 36,000. About 5% of that is time stamps; the rest is a good size novel. Boring and repetitious, but it has allowed me to see patterns, which identified the side effects – and the consequences of drug changes. I haven’t had the energy to report the side effects to the FDA – a huge item on my to do list.
Reading. I forced myself to read that bunch of scientific papers (okay, SKIM, not read, looking for the necessary parts – because things were getting worse by the day in the side effects department, and I needed to get off drugs). Unbelievably exhausting – but I found what I needed – thank you, Dr. Google and online medical papers.
Blogging. I think I’ve put out around ten posts of about 1500 words each, turning some of that journaling into semi-coherent pieces of description of one or another topic in those journals.
Surfing. THERE IS NOTHING TO READ ON THE INTERNET. I don’t know where most of the content went, but it seems WAY down from when I started educating myself on self-publishing back in 2012. Several prominent bloggers then have either stopped posting, or have cut way back.
Games. No, don’t get excited – I haven’t had the brainpower for real games. Sudoku and Drench, a simple flash game, things I can play rather mindlessly (even the hard Sudokus which I use to gauge mental speed); very occasionally Bee Cells on my Color Nook – the only thing I sometimes charge it up to take somewhere (I can’t leave it charged – no ability to stop playing).
Sleeping. Night runs 6-7 interrupted hours; and I’m still aiming for 3-5 half-hour naps during which my brain dumps the junk (I call it ‘mental dialysis’ – used to work much better). I meditate during the naps, keep the heart rate and blood pressure down, calm myself, get through.
Sitting. Here, at the computer, waiting each day for my brain to come back. Getting an hour once a week up until quite recently. Now I’m up to an hour every second or third day. Note that it takes me 5-6 hours to GET that hour, and involves rituals having to do with Diet Coke, food, naps, and what I’m allowed to do while there is any possibility the brain might visit that day (mostly that surfing, and the leaving of comments if there’s ANYTHING I can contribute to a discussion).
Can’t: listen to music – it hurts my ears. Do anything artistic, even coloring in a coloring book, because it seems both boring and pointless. Embroider. Sew. Clean. Work on getting this house ready for market when my assistant is here a few hours a week. Talk to people – phone, video, or in person are exhausting. Leave the house – I think I’m up to once or twice a week, and pay for it, and most of them have been visits to the you-know-whos.
There IS no solution that comes from without
I don’t need pity. Suggestions are pretty useless in the present conditions, though they have been lovely from people showing concern.
All I can do is HOPE that this extremely slow process – doing what I can, exercising my 8 min. three times a week, continuing to eat carefully so it doesn’t set off the new gut instabilities and I lose a bit of weight (good for heart and joints), praying, not giving up – will result in something positive.
I got that hour of ‘brain on’ today – and finished a scene I started six weeks ago. It isn’t me, it isn’t writer’s block – the instant the brain is on, I head for the WIP (work in progress) and get started. It isn’t depression keeping me from writing (though I’m rather depressed about the situation, it’s just that, situational). And it isn’t even dealing with the post-traumatic stress – I’ve done that, I’m doing that, and without the drugs in my system some of the more hallucinatory effects have disappeared (which proves they’ve never been me in the first place).
I can’t even eat chocolate! I tried a couple of times, made two tablespoonfuls of chocolate chips last an hour – and then was hit with a rapid heart rate and elevated temperature period afterward, each time, that has made me very skittish.
I feel like Job in the Old Testament – hopeful, yet subject to boils and all other disasters. My trust in the Almightly hasn’t wavered (much), but I sure wish I could ask Him a lot of questions.
As I said, PATIENCE is a virtue I don’t have.
I’m being forced to pretend. Got it. I don’t need to disturb my poor friends and family any more than I’ve already done.
If I’ve missed something obvious, please feel free. Pray. I don’t see what else to do.
Thank you for letting me vent. I will be happy to listen to YOU vent.
And yes, I’m still grateful to be alive, however pointless it seems right now. It CAN get a LOT worse. But then boredom wouldn’t really be the problem any more – survival would.
You’re using your time very productively in researching, organizing, and sharing your experience. And you gave encouragement and inspiration second-hand to a friend of mine who was languishing in ill-health and fighting with doctors who insisted they knew what was wrong (various things, depending on the doctors) while NOT LISTENING TO HER tell them about HER system and its reactions. She finally found someone who would listen, and she’s doing much better. But my relating to her your experiences did her good and bucked her up in her struggle to not succumb.
My very best to your friend – not being listened to is something we CFS folk have learned early in our interactions with traditional medicine: when they don’t understand something, can’t measure it, can’t do anything, many doctors decide it must be psychological and you’re doing it to get attention! Which is ridiculous, because any of us can tell you (and those with so many other invisible illnesses) that the attention we get is minuscule, grudging, and sporadic at best. I know a lot of heros.
I share for that exact reason – it may help someone else.
Glad she found a better doctor – we know ourselves. There isn’t a real sick person out there who wouldn’t rather work. That’s why I push myself so hard, but many use everything they have just to stay alive.
I’ll tell Gay – she’s one of those heroes.
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I could relate to so much of what you’ve said. You inspire me to keep going and I love your honesty.
Be gentle with yourself and remember that even if you’re not where you want to be, you’re not where you used to be.
Writing novels is one of those things that comes into its value only at the end. Which causes some anxiety when something keeps you from moving toward the end you have envisioned. As it happens to be the only creative thing I have left to me, and I really enjoy it, it carries far too much weight as a part of my soul, and its potential downside is huge when I can’t do it.
I’m coming out of the worst period, but it has me scalded – it could happen again. I didn’t have THAT fear before; only the fear of being slow, and of not being able to do what I’d never done before.
Goals keep moving. I know how hard it is for so many of my friends with CFS – that bit of crativity is not available, as it takes ALL their energy to survive. I try to be upbeat about it. After all, what is one more novel to a world full of them? But that’s not how I really feel.
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Alicia, I am rooting for you, as always. I think the right combinations of persistence and gentleness with yourself will get you back to where you want to be. You say patience is a virtue you don’t have, but you may yet come to develop it, whether you want to or not.
I’m working more – but all my methods seem to have taken a hit. Thanks for your support – it’s not patience, it’s stubbornness now. And beating my head against the rocks.
The really scary part – things getting progressively worse – seems to have abated: I can drive myself home from church without a panic attack.
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I understand this in a low-key way. Your issues are bigger/ greater / worse than mine, but they’re relatable. However, I notice that your achievements and capabilities, as well as your ambition, is also much greater than mine. That’s all relative, of course.
But what I can say I know for sure: Some people are hemmers and hawers and they sometimes seem okay to be down, or as though they enjoy building obstacles for paths they have not attempted… WE are not those people. I know, also, that there is nothing more frustrating to a vivacious, capable person, than being limited by their own bodies.
I appreciate the venting.
I appreciate reflections. I like things that make me THINK.
I wasn’t planning on having THOSE issues, but that’s what’s on my plate, and my mother didn’t bring up whiners.
Venters, yes. But I vent to start conversations, as you do, not for the sake of complaining. I’ve had some great ‘talks’ here and on other people’s blogs, yours included. It enriches my life, because otherwise I wouldn’t see many people from one week to the next.
I keep hoping to get past this piece of my life, and back to work, and I think that is starting to happen. I also hope some of this may some day help someone else navigate the whitewater: they’ll remember a warning about side effects, or take themselves to the ER at the right time, or talk back to a doctor.
Otherwise, what is writing for?
And you noticed I’m ambitious? Good. Disabled people aren’t supposed to be allowed to be ambitious. We’re supposed to quietly disappear.
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