Okay, so this comes up from time to time, mostly with insurance companies (because they are a bag of dicks). How can you blog if you are so chronically ill you cannot work. I have heard a lot of bloggers have this question thrown at them or used against them. And I am going to say this: Do not judge others on what they do in the window of time they can do anything at all.
The answer I used to have about blogging and chronic pain:
- Writing, for me, is a pain distraction.
- Writing, for me, is a way to work through the issues, problems, and frustrations of chronic pain.
- Writing, for me, is something I have a passion for and I will do it when pain is moderate. Just not when it is severe.
- Writing, for me, is a hobby I am willing to expend the effort on even though there are consequences.
The answer now is more complicated. All of that is true, but with vestibular migraine, well, every single thing I do has become a really complex venture that rapidly makes me worse.
So for the last while now blogging is difficult:
- I have troubles coming up with ideas because I am so cognitively out of it.
- I have problems writing because of the actual dizziness and also because of the cognitive problems.
- I get confused on how to do things. So image creation is difficult. I can’t remember how to Do it. And so it is just a lot of confusion.
- I have problems reading and with reading comprehension. Sort of hard to edit that way.
- I have problems with being coherent and keeping an idea focused. Because my concentration and focus are shot to hell.
- 95.34% of the day I am incapable of doing anything let alone writing. And some days that is 100%. I get a lot of severe days, and that just makes things impossible.
- I literally have these problems with pain alone, but with vertigo and dizziness and all that crap, it makes it exceedingly hard. It makes everything exceedingly hard. It is so much effort to exist.
Basically, it is what I call the ‘fuckening’ (sorry for the language but that is the name I gave it). And the fuckening is the rapid progression from mild symptoms, to moderate, to severe. I have had some exceptional days where this didn’t happen until the afternoon, but that is extremely rare. Sometimes, on bad days, it happens the moment I get out of bed. And that means it will be a very, very bad day. Because it just gets worse as the day gets long. And on good days, it happens shortly after I get up. So I have a window of mild symptoms. I am spacy from the mild dizziness and a bit unbalanced, but this is my ‘functional’ window. And I have no idea how long the window will last. Or how fast I’ll move from moderate to severe once it does. I do know doing things, anything, including standing and sitting, will make it faster. I can hover in moderate for longer, if I rest a lot. So not able to do anything but holding off the severity.
But I want to do a little bit every day. Makes me feel mentally better but physically much worse. So just a wee bit. And I have to choose what that will be in the ‘window’. Maybe some very light housework. Maybe a little reading before my eyes get too ‘swimming’. And maybe some writing while I can focus better, before the cognitive decline hits hard.
We all choose what to do in our ‘window’ of lesser severity. And some of the things we choose to do… are our hobbies and things that make us feel better mentally. And that for me is writing. It is my main hobby. And I would be traumatized if I couldn’t do it at all anymore. I want to write. So I do. Yeah, it takes two to three days to write a post. And I get that the quality isn’t what it was but I enjoy the process. I enjoy writing. And we have to do things we enjoy because mentally chronic illness is a bit of a soul-sucker. We need the emotional boost we get from some activities and hobbies. We are willing to spend the effort it takes. Willing to use that fragment of energy and time on it. And we understand the consequences of it in pain, fatigue, mental clarity and the need to rest after. And also, of course, choosing to do that thing has a consequence of not being able to do that other thing.
I just want to say I am still me. I am still the same essential person. And I can still do what I enjoy, within the limitations I have. With severer limitations, I think it is even more essential to me. It is emotionally exhausting not to be able to function for most of the day. We need things to hold onto. And we should hold onto them. Quality of life is a difficult thing to manage with chronic illness and engaging in activities, passions, or hobbies of any sort for whatever limited time we can, has a massive amount of value.