For the chronically ill, details are all. To cope with chronic illness means to routinely scan minute bodily processes. Attention is vigilantly focused, sometimes hour by hour, to the specifics of circumstances and events that could be potential sources of worsening. There is the daily quest for control of the known provoking agents. Enervating decisions must be made about when to initiate or terminate an activity, when to move from baseline medication to second-level drugs, and when to seek professional help. And all this occurs in the context of active lives that are filled with the same pressures, threats, vagaries, and exultations that make of normal living such a ‘blooming, buzzing confusion’ [James] Is it any wonder that exhaustion is one of the common shared experiences of chronic illness?
It amuses me when people say “oh, you’re so strong. I wouldn’t be able to deal with a chronic illness. I just wouldn’t.”
It’s as though, a few years ago, I looked in the mirror one day and said “I’m so strong. You know what? I think I could deal with something that majorly fucks with my life/body/brain like a chronic illness.”
Five years ago, I probably thought the same thing - that I simply couldn’t have a chronic illness. Type A personality, that’s me. But that’s the thing about these wonderful diseases and health issues, you don’t expect to become sick. You have to adapt to survive. So your personality changes, your expectations changes, everything changes to ensure that you get through the day.
It isn’t a choice. I don’t want to be like this. I don’t survive this illness because I’m strong, either. I only deal with the cards that were given to me. You’ve gotta do what you’ve gotta do.
I get to take two fewer pills now!
Earlier in the week I saw my endocrinologist, and the latest round of blood tests showed that I was still taking too much hyperthyroid medicine, even after cutting the dose in half last time. So, for the next eight weeks at least, no thyroid meds!
It’ll take about six weeks or so for what has been being suppressed to respond to the absence of the medication. Then we’ll see if I start being hyperthyroid again or not. Until then, I’ll still be dealing with the tiredness of being hypothyroid. But I’m hopeful!
It’s 2:00 am and a seven years ago, and I’m three and a half hours outside of Vegas. Ninety more minutes and I’ll be, if not home, at least deep in the city lights. But right now I’m barreling down U.S. 60 outside of Wickenburg, scared I’m gonna die. I’ve hit the rumble strips twice in the past five minutes, and fallen asleep five times in the last ten, if only for two seconds. Microsleep. It’s good to have a name for what might kill you.
The night is starless, a tomb. Single cars approach so rarely I wonder if the world’s gone dead and no one notified me.
My eyelids are out of my control, limp muscles faltering under their own weight, let alone the lead curtains they must support. I can’t do it. I just can’t do it. There’s got to be a rest stop somewhere, but I can’t.
I have to pull over, to save my life. Far off the road, kill the lights, hope no one mistake me for being on the road. I don’t care if I sleep all night here, I have to. Whenever I wake up, I’ll be fine. Then I can make it home. But I can’t fight it anymore. I can’t. I can’t. Even just an hour’s sleep, and I can make it home.
Over half a decade later. Every morning. Every damned morning, I wake up. It doesn’t matter how long I slept. Every damned morning I get up, and I feel like that night, driving home from Vegas, alone, on a moonless night, unable to stay awake to save my life. Every. Damned. Morning.
I take the amphetamines to wake up my brain, chase it with strong coffee, and a pill to keep my heart from beating so fast it explodes. And I wait. It’ll be two hours before it all hits. Two hours before the fog clears, and my eyelids are no longer lead curtains. Two hours before every breath doesn’t feel like a yawn about to start. Two hours before I can sit up straight without it being a fierce act of will.
Antidepressants to lift me out of the blackness. A pill the size of a small child, to make my cells stop ignoring my body’s insulin. Two little white pills to keep my thyroid from running amok. A tiny aspirin, just in case the beta blockers don’t keep me from having a heart attack. And to top it off, something for the heartburn, which was there even before most of this started.
And yet, still, every day, I’m on a lonely desert backroad in the dark — yearning, aching, but unable to make it home.. without.. a little… more… rest.
I have been conscious for 3-1/2 hours consecutively
This is a new record for this week so far.
Today I am tired
- I’m tired
- I’m tired of being tired.
- I’m tired of feeling like this.
- I’m tired of feelings.
- I’m tired of “hanging in there”.
- I’m tired of fighting the good fight.
- I’m tired of the fight.
But I’ll hang in there, but that’s the default. I’m too tired to do anything else.
Got up, felt good for half an hour or so, then started getting tired again. I’ve almost made it three hours, and I consider that a moral victory.
Now I’m trying to decide if I take a nap, or do some more research on myalgic encephalomyelitis.
Because making coffee would be just too much work.