I wrote this in January, it’s just as applicable in July. This is a perfect representation of what chronic illness is like. I’ve been slowly working toward getting this blog set up, but life kept getting in the way. Today is my one year anniversary, I had my first covid symptoms July 28, 2022.
In this post, I’ll share a few things about me, my current diagnoses, and what you can expect from this blog. At the end is a list of ways you can help!
I’m approaching 6 months since I got COVID and we’ve just passed the new year (both Gregorian and lunar) so I’ve been doing a bunch of reflecting. I process by writing, but writing causes a symptom flare, so this has been challenging.
A few things to know before I jump into the brain dump of posts:
- My job is as a remote curriculum editor. Work used to be a defining part of my identity, less so now that I’ve been on disability leave. I still love talking about math education and it’s still important to me!
- I’m not new to being disabled, I am new to being so significantly disabled. My health has been and continues to be a significant part of my identity.
- I have a puppy, his name is Brownie, he’s the best.
Right now long covid for me includes 3 official diagnoses:
- Chronic fatigue (10.5 hours of sleep per day to have enough energy for a couple short dog walks and an appointment, with plenty of rest in between.)
- Near daily headache (It’s a 24/7 headache but the diagnosis code includes near daily and constant headaches together. With medication and strategies I can get to the point I’m not noticing it constantly, visual focus makes it worse.)
- Dysautonomia (My body enters flight or fight mode and instead of exiting when the event ends it gets caught in a spiral of ever increasing symptoms. POTS lives under this umbrella, it’s also not an official diagnosis yet.)
I will definitely be writing posts from the perspective of current me. I’ll probably also write some posts that revisit earlier stages. I have snippets of my thoughts in tweets and journal entries that I’d like to compile into longer form. My headache is indicating my body doesn’t currently like long form- mental, physical, and emotional exertion all contribute to the levels of pain and fatigue I experience. Turns out writing requires all three. I’ve learned a lot about the muscles around my eyeballs that are required to look at things, not to mention the challenge of coming up with an ergonomic set up for reclining and using my phone when that’s all that my body can handle.
So what’s next?
This blog will include informational posts about the conditions I have, share how I’m coping, and maybe some guest posts? I’ve been building up a backlog of posts so things will go up frequently at first and then as I feel inspired to post once I’ve gone through those.
People have asked how they can help:
- Broadly
- Wear a mask anywhere you’re in close contact with strangers
- Advocate for clean air solutions so masking is just one layer of protection
- Talk to people about the fact that a) covid is still circulating b) people are still sick with long covid and continue to become sick c) every exposure to covid increases your risk of long term impacts (some of which are immediately obvious like in my case, some of which may not show up for months or years)
- Personally
- Reach out! Send a text or call if you have my phone number. Leave a comment or connect on Instagram. Chronic illness is isolating.
- Share audiobook recommendations, this is my primary form of entertainment. I mostly listen to romance novels and small town murder mysteries. I like my books light and predictable because real life is neither of those.
- Check out this Google doc of tasks I’d like to do eventually, but haven’t because screen time causes symptoms. Tag me in a comment if one looks interesting and I’ll let you know the details of what I need help with!
You should be able to subscribe to this blog to get email notifications as new posts go up. The only social media I’m active on is Instagram, where my username is still crstn85. A preview of my first year by the numbers post is up there now, along with lots of other tidbits of what life is like. I’m hoping to get a “day in the life” post up today too, but there’s a big thunderstorm rolling through right now and weather changes cause symptom flares, so no promises.
Tina Cardone 