On “Getting Better”

It is time for your irregularly scheduled 4am blog post, because when you’re stuck in bed most of the time because your blood pressure goes nuclear when you stand up, your sleep schedule goes to heck.

Something I’ve been trying to deal with lately is the concept of “getting better” or, as my aunt and uncle like to word it, “getting well”. (They haven’t replied to my email about my current health, which was in reply to their queries. I don’t think they know what to say.) “Getting well” is a phrase that a lot of disabled and chronically ill people struggle with, because it’s at odds with facts.

The fact is that while being this sick may not be my forever, I am never going to be well. There’s too much wrong with me. Whatever precipitated my blood pressure going nuts, whatever tipped the scales of my pituitary inflammation into outright hypophysitis earlier this year – which turns out was probably a fun little thing called pituitary apoplexy – my blood disorder putting me at higher risk of further pituitary drama, my cocktail of essential medications that all have side effects, interactions, and contraindications – they don’t mesh into “being well”. The best I can do is managing.

And most of the time, I’m okay with that. I have trouble dealing with how hard things are right now, because right now is a nightmare of not even being able to get a drink for myself without my blood pressure shooting up to levels that, if sustained for long, are classed as hypertensive crisis, and then feeling like a burden for having to ask people to fetch and carry for me, but also knowing that dehydration – which I’m prone to – worsens hypertension. I’m struggling a lot with right now because we don’t have a plan yet,although I’m seeing my GP and endocrinologist this week. But I’m okay with the notion that I won’t ever be well. I mean, I haven’t been for a long time. Managing is fine.

Where it gets hard is other people. Having to depend on them, because it makes me feel lazy, like they resent me, like they should resent me, is one aspect. But another is how little people really understand what it’s like being chronically ill or disabled. That’s part of why this blog exists, after all – maybe my grumbling into the void will be helpful for someone. It’s helpful for me to put words down, anyway.

But people say things like “get better” or “feel better” and I understand where they’re coming from. They’re sad I feel unwell and they wish I didn’t. But I don’t know when or if I’ll feel better, and what if the better that I feel isn’t “enough”? What if I feel well enough to do something one day but not another, and that’s seen as me faking it or making excuses? What if “get better” means “stop complaining”?

The Engineer is very good at telling me that he’s sure this isn’t a permanent state of awful. And I believe that, but believing that doesn’t help when I can’t sleep because of a hypertensive headache but can’t sit up because it will make the headache worse. Things might get better in the future, but that doesn’t help me now.

Sometimes you just want acknowledgement that things suck.