Hello, all!
I started 2023 taking a break from blogging because I was stressed and my health was getting worse and it just wasn’t fun anymore. The plan was to not write or post anything through April but by that time a lot and nothing had happened and I didn’t end up starting again. Until now, I guess.
The past year was in some ways one of the worst I’ve had, but there were sprinkles of relief throughout.
I’ve officially hit five years since the virus that likely started this version of my chronic illness life, and year five was the worst so far. Overall, my experience been the textbook definition of something that snowballed. What started with achey, tingling hands and a few other holdover symptoms after a terrible cold that four months later made me think, “this is weird, maybe I should talk to my doctor about it,” has steadily gotten worse. Specialists appointments, medical tests, medications, and yet I’m here.
Here is long term disability leave since the end of March.
Here is using a cane any time I go out and have to walk somewhere I can’t sit down right away. And sometimes inside my apartment when my pain extra flared up.
Here is three new diagnoses made as best guesses based on ruling other things out since there’s no official way to test for them and diagnose definitively.
Here is constant widespread muscle and joint pain, tingling limbs, fatigue that gets worse when I do anything, a heart rate that goes berserk when I do anything, easily overheating, migraines, digestive issues, such intense brain fog and cognitive issues that I have the memory of something that has a terrible memory (a goldfish? I am pretty sure that is the phrase but can’t remember and can’t be bothered to use what mental energy I do have today to look it up), and more.
But as I said, here did come with some relief.
Being off work these months has allowed me to slow down and focus on managing my health. I recently tallied the number of medical related tasks I did in 2023 including appointments, tests, treatments, medical admin (phone calls, emails, etc.), and other related errands. The number was 213 and I know for certain there were more I didn’t write down or track and now can’t remember. As much as I would love to be able to do the work I loved at my job, I have not been able to do both in my current condition. Being chronically ill is a full time job in itself, so in that sense finally going on leave after more than a year of working at a reduced schedule and still not managing that? Relief.
Someone I follow online who shares a lot about her own experience with disability once said something along the lines of:
If you wonder whether you’re disabled enough to use a mobility aid, you probably need it. Non-disabled people don’t think about it at all, so just get one.
@_philayana (Instagram, paraphrased)
That was the permission I needed to let myself purchase my first cane. The first one didn’t end up working for me, but I have a different one that suits my needs better now. Allowing myself to use a mobility aid has given me a bit more endurance on outings and with that, a bit more freedom. It’s also meant that when my pain is at the level that I have to wonder at each movement and step whether the next will cause a twinge so intense I will fall, I have the extra support and can move around at home. Relief.
Of the two diagnoses I sort of received during the year, one I’d been mentioning to doctors as a possibility (based on my own research and experiences), and the second I learned about during my first PT assessment last January. So all in all, five months from referrals to actually seeing the specialists is not that long. Some people asked if I was down about the diagnoses and honestly, I wasn’t. Maybe if it was still all new and mysterious I would have been, but I’d been at this for four and a half years at that point and had already accepted that whatever is going on with me is probably chronic/long-term/forever. The diagnoses were not terminal and were what I already thought I might have, which was affirming. Relief.
Not sure I have a silver lining for the actual pain, fatigue, and other symptoms that come with my conditions, but I don’t think I need to find one. Sometimes things just suck and it’s okay to feel that way about them. Realistically, I do most of what I’m supposed to do to help my body deal with what’s going on (I’m often lacking nutrition and exercise wise since prep work and cooking aren’t always in the cards for me energy wise and exercise tends to cause a flare up) but I still have very little control over what it’s going to do, how I’m going to react or respond to something. So the overall actual being ill part? No silver linings or relief there.
I ended the year with another PT assessment and the recommendations lead to an OT program I’ve just started this month. I’m only a few sessions in and am still unsure whether it will help, but it’s something we haven’t tried so I’m doing what I need to and am curious to see how it progresses.
I will likely share more about my year and the things I’ve mentioned here as I get back into writing and posting. I’m generally an open person and will still only share what I’m comfortable with, but I have benefited a lot from others in the chronic illness/disability community who share their experiences. If I can be that for even one person, sharing is worth it. If you think something is TMI, you don’t need to read it. It probably isn’t for you, it’s for someone else, and that’s okay.
I don’t know how often I’ll post, whether it will become a regular thing again, or even what I plan to write about, but I started writing fiction for fun for the first time since childhood back in the fall and now I want to pick up this informal/personal nonfiction writing again too.
So she’s back. Ish.
-Katie
Chronically KD 