Sometimes there’s a reason you can’t write

A road going off into the snow. Text: Who suffers? That's whose responsibility is it. Alicia Butcher Ehrhardt

COUNTING ON YOUR IMMUNE SYSTEM?

Just because you’re sick doesn’t mean you can’t get sicker

It has been an extraordinary two-month+ period, and I’m only now realizing that it was kind of not my fault. But it also was.

I was seriously worried that my ability to continue to function was deteriorating further. Since I have very little of it, losing more is a continuing concern.

I fight to retain mobility, and still hope, if we move to a place with the right facilities, to be able to regain some. I need access to a gym and a pool, and a safe indoor space to practice walking.

I hope, if we move, and reduce the list of things that go wrong with a house, I will have more time and energy for myself, to write with.

But all of that is useless if the brain has decided to go down another notch.

The past ten years have been mostly on an even keel

I got things, I felt sick for a day, the ‘thing’ went away: my always-on immune system seemed to fight it off. Other people got things like colds – I felt as if I was going to, but most of the time didn’t.

I got cocky.

And then ‘level’ and ‘normal for me even with CFS’ changed – and changed drastically

I’ve been sick, sick enough for it to impair my cognition, for most of the past ten weeks – but didn’t realize it.

My first written notes about the problem pin it to the beginning of November 2016, when I felt ill for a day in a pattern I’m used to, my over-active immune system seemed to deal with the problem, as I have come to  expect, but I developed a cough. I assumed I’d fought of another virus, but was experiencing its aftermath anyway.

Most people who have a post-viral cough will fight it off eventually, because their immune system keeps working away at it. This is where ‘walking pneumonia’ comes from: is it actually a form of pneumonia the body fights off well enough for the person not to need to be hospitalized for the pneumonia. It is serious; the person will feel tireder than normal, not quite right – but most people will fight it off.

For a few of those people, however, the continued coughing, and the strain the coughing and the viral infection put on the system will make the person vulnerable to catching something on top of the original.

So, first I had the post-viral cough. It went on a month – I visited the doctor, and she listened carefully, told me the lungs were perfectly clear, and that these things sometimes went a long time (she’d had it last herself). I was extra-tired, and the visit itself came from energy I was trying to protect. “Call if it doesn’t go away after the holidays,” she said.

What went wrong/wronger?

Another month passed. I was going to call her at the end of the first week of the new year (last week), when I realized a new symptom had appeared: wheezing, always a bad sign. I called the next day, she couldn’t see me, I was told to go to urgent care. Urgent care did a chest Xray to rule out pneumonia or something worse (like lung cancer, which can present as a persistent cough), diagnosed bronchitis (very uncomfortable, I tell you), and sent me home with a five-day course of Azithromycin. I took the last pill this morning.

It should have been enough.

But: During the week after New Year’s, husband developed a nasty cold – and cough. He assumed he’d gotten what I had, and, here’s the kicker, didn’t do anything special to avoid passing it on to me. To be fair, it was a reasonable assumption.

We should have paid far more attention: the cough he had was nothing like the one I had.

The fear of further deterioration

I haven’t been able to write consistently for weeks. Even the post-viral cough was enough strain on my system that it took that little bit of functionality and the little bit of good time I can usually count one every day.

It wasn’t just life (as I may have written). Yes, there was a lot going on with the last chick leaving the nest, and the holidays. I would have expected, did expect, not to get a lot of writing done under the year-end conditions. But, looking back, this was worse: almost no writing – even of blog posts – was going on. I’ve stated before I have 30-40 posts started – and I couldn’t complete one. Apparently, finishing up a post and publishing it takes a little of that ‘good time’ for the final effort to add a few headlines, to make sure the whole is coherent and has a point. I don’t just stop at some point: I clean up, reread, get the ducks in a row, edit, polish, check references, add links… It’s not hard on a normal day, but it does take a bit of that precious energy.

Every disabled person, every chronically ill person, fears one thing: getting worse.

Healthy people don’t constantly think about becoming unhealthy; they even sometimes feel invulnerable (teenagers, especially!). But, for the rest of us, our body has already failed to heal to full functionality, so we know we are vulnerable. Too vulnerable.

The first instinct when things seem worse is to hope it is temporary, and it will go away. If there is a new symptom, I watch to see if it will resolve, or if I can find a workaround.

But I have never in the past worried that I should be extra-vigilant when in that state, if indeed it is a state – and not the permanent downward step I fear.

I have learned a new and painful lesson: I am able to get sick/sicker. I am not immune to catching other things if I’m already under strain. My immune system, compromised as it is, can fail even more.

And there are some nasty bugs out there – and they don’t care whose body they hitchhike on.

My brain came back this morning

Somewhat. A bit. But at least coherent in the way I am used to (so, closer to my ‘normal with CFS’).

And the first thing I’ve done is to write all this down, to record it for my own edification (and possibly yours).

The big fail – which I hope not to repeat – was husband assuming he had what I had, and not taking the normal precautions against spreading whatever he was fighting off; compounded by me not insisting. When he’s sick, he is not thinking of anything but being miserable (it doesn’t happen that often – lucky stiff).

He handed me things, coughed in my direction, left tissues everywhere.

But it’s all really my fault (it always is): I let him hand me things, picked up tissues from the floor and emptied wastebaskets, didn’t insist he take precautions (because mostly that’s the way we’ve always operated).

I am the one who is vulnerable – I am the one who is going to have to remember this lesson, and enforce best practices from now on: if someone is sick, stay away, wash hands frequently, insist they pick up their own debris, and do everything I can to protect myself.

Because I am the one who can’t write if she doesn’t.

Hope this saves someone else from worse. What say you?

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9 thoughts on “Sometimes there’s a reason you can’t write

  1. marianallen

    I have to be responsible for my mom, who has mild dementia. She doesn’t always know when she’s about to overtire herself or put herself in a situation that will compromise her health. It’s a bit like having a baby again, and I say that without meaning any disrespect to my mother. I just mean that, like a baby or a small child, she isn’t always aware of the dangers of a situation, so I have to be hyper-vigilant for two bodies instead of one. I also have to be extra careful of my own health, so I don’t pass anything on to her. Glad you’re feeling better!

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