How can you blog? If you are chronically ill?

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.

How can you blog-If you have a chronic illness

The answer I used to have about blogging and chronic pain:

  1. Writing, for me, is a pain distraction.
  2. Writing, for me, is a way to work through the issues, problems, and frustrations of chronic pain.
  3. 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.
  4. 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:

  1. I have troubles coming up with ideas because I am so cognitively out of it.
  2. I have problems writing because of the actual dizziness and also because of the cognitive problems.
  3. 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.
  4. I have problems reading and with reading comprehension. Sort of hard to edit that way.
  5. I have problems with being coherent and keeping an idea focused. Because my concentration and focus are shot to hell.
  6. 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.
  7. 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.

Other posts on the topic:

Chronic illness: Savouring simple pleasures

The half-life of chronic illness

Dealing with lower functionality
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13 comments

  1. So so true. What do they expect you to do, stare at the wall and think about your pain all day? You write beautifully, I’m sorry you have so few windows where you are able to enjoy it. Keep fighting the fight, sending positive vibes your way. 💕

    Liked by 3 people

    1. I do hope that window gets a bit longer for sure. I am not used to things being as bad as they are now. But, yeah, we need things to do in the day or good days. Even if they are just little things.

      Liked by 2 people

      1. It’s hard to believe things will get better when you’re in the dark days but they will. Chronic illness gives a whole new definition to patience and perseverance. You’re right though, focussing on the little things is what gets you through. 💕

        Liked by 1 person

      2. It is weird how often we think ‘Oh, this can’t get worse’ and then BAM it gets way worse. But just because it does doesn’t mean it can’t get better again. And even if it doesn’t we endure. Knowing that I think helps right now, even though I am scared I’ll be stuck this way

        Liked by 2 people

      3. Exactly! But I guess that’s life all over, right? The balance may be a bit skewy for some, and the rollercoaster doesn’t always come out of the valley as high as it went in, but you know you can manage whatever comes, even if it feels impossible sometimes.

        Liked by 1 person

  2. I love fuckening! It fits perfectly for what happens to us! I’m glad you raised this issue. I haven’t faced it yet, but then I don’t blog under my name. Last week after a perfume blast, I couldn’t remember my name let alone write. But when I can, I want to write, too.

    Liked by 1 person

  3. Totally agree with you. It makes no sense. Blogging is totally different to have a job. There’s much less responsibility/stress. No set hours so you can make the most of windows of functionality. It’s a hobby; not a job (for the majority of bloggers). It’s simply illogical to use ‘well, you can blog so you can work’ as an argument. It’s like saying, ‘oh, you can paint/birdwatch/make coffee so you can work.’ They are two totally different beasts.

    Liked by 2 people

    1. Very much so. But it is very similar to that whole ‘you did a thing yesterday so why can’t you today?’ But we have limits and have to really pace not to mention bad days

      Like

    2. You got it! For me, at least. When I’m good, I probably could work some. When I am bad, I am very disabled. But there is no predicting when or how long either will last. So what good does that do an employer? He couldn’t depend on me to get his work done!

      Liked by 2 people

      1. Yes it is that lack of reliability. Employers do not like that. Which I am aware of from trying to work. I don’t blame them for that. It is frustrating.

        Like

  4. Thanks for addressing this issue! So much of this is my story. Even the vestibular migraines. I don’t have a blog because I go through so many long flares, it kind of intimidated me. And honestly, I’m so foggy, I wasnusure I could sustain it. I decided to try IG(truth: my niece cajoled me into it and set it up).Even that seemed a stretch — and I don’t post every day. I’m generally housebound so I wondered what I could possibly have to share — especially photos. But it’s been working out. Thing is, what others can whip off in no time, takes me the better part of the day due to pain and extremely foggy brain. Still, I like sharing and connecting. I wrote a guest blog for ‘A Chronic Voice’ (I think it was posted in May or June). I started writing it last summer! Same with the Mighty and a print piece in Bella Grace magazine. But it’s all worth it. Writing is at the heart of my days and I’m grateful to have a focus despite the daily struggle. I’m glad I came across your blog via Sheryl Chan ( she provides an amazing way to connect). I wish you well and will visit again.

    Liked by 1 person

    1. It does make it hard for sure. Sometimes it takes me a couple of days per post. My symptoms get severe the longer I am up… so I really aim for doing it in the morning! But I am so glad you found a way to as well. Writing can be such an awesome thing. I’d hate to lose my ability to do it altogether. Which I thought I might. It is worth it though. Definitely worth it.

      Liked by 1 person

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