Updates On Remodeling Life For Chronic Illness

Where have I been? Well, certainly not on beautiful Italian mountaintops where this picture was taken (although at one point I was). It just seemed like a nice blog post picture. And it was one of the first to pop up when I was going through my pictures to make this. And I like looking like I actually have a life.

For a short while, I was keeping my blog updated. I purchased a domain, thinking perhaps I could transform what was once a place to dump ideas that I liked every few months into a Blog. Like, a Blogger Blog. With readers and money and everything. But, as suddenly as my ability to write had returned, it disappeared again. It was like my brain was on a permanent fog delay. It still is, much of the time.

Sitting at my laptop to write simply began to hurt too much — as did reading, playing instruments, and many other things. At this point, after several years of testing for Lyme and other possible sources of the pain, fatigue, and other symptoms, the only fixed diagnosis I had received was Fibromyalgia (diagnosed rather quickly and dismissively by a rheumatologist, who then offered no guidance other than to tell me to look it up on the internet). So I saw a chiropractor regularly, tried massage therapy, and new pain meds every few months, and just… waited. When my neck pain gets really bad, it radiates into my forehead and my entire skull aches as if someone has shot an invisible arrow through it. This was my norm for a while.

Every week I would go to my chiropractor, and every week my neck seemed to be getting harder and harder to adjust. I got the feeling he was starting to give up, and I don’t blame him — In his words, it was “like trying to adjust a plank of wood.” Tired of going home with my neck and head still hurting and only being told to use heat and ice to treat it, I asked if there was anything else I could do for the pain. An MRI was ordered.

Initially, I had a conflict and couldn’t make the appointment, but after that I just kept rescheduling it. I was tired of doing test after test just for them to come back normal when clearly something was wrong.

The doctor handling my medications smiled knowingly when I told him about the MRI. “You won’t find anything on that,” he said confidently and dismissively. I had two thoughts in response to this: 1.) You’re a psychologist. You don’t have enough information to tell me that. 2.) Maybe he’s right. Maybe it’ll just be another waste of time and money. Maybe I shouldn’t go through with it.

Luckily, my therapist and I decided my first thought was more logical. And, luckily, I’m extremely contrary and his comment had pissed me off just enough to go through with it, if only to prove him wrong if something was there.

And something was.

That MRI led to my first not-invisible diagnosis in a long time: Klippel Feil Syndrome. Basically, two of the vertebrae in my neck are fused and my neck is much straighter than it’s supposed to be and it’s real painful. I was extremely happy to finally have a problem I could see. A test that didn’t come back normal, that didn’t leave doctors to come up with a cause based on information that wasn’t there.

This time, someone could point to the scans and clearly, without a doubt, tell me what and where the problem was. Also, I got the satisfaction of reporting the significant results to my dismissive doctor.

With Klippel Feil, which is a congenital condition, you are not supposed to do contact sports, or anything where you could hit or jar your spine and neck — i.e., everything I did as a child. My mom, looking back on my years of horseback riding falls and doing tricks with friends on the trampoline, was now very concerned there might be neurological damage and very glad I was still alive. No one in my town knew what to do with this relatively rare diagnosis, so off to Johns Hopkins I went to see a specialist.

As of now, I’ve only had one appointment there. Though I don’t know much more about my condition at this point, I’m giving Hopkins a paragraph just because it turned out to be the first time in a long time that I did not come out of a medical office crying and extremely depressed. The people at Hopkins seemed genuinely happy to see their patients and asses their problems. There were tons of people ready to help you at every turn, and they did so without any awkward and uncomfortable jokes. There was also hand sanitizer everywhere, which is awesome if you have germ-related OCD like I do. But most importantly, I was not sent out with whatever diagnosis would let the doctor off earliest and with the least work, and I felt respected and believed.

In the time I haven’t been in doctor’s offices, I’ve been mostly… sitting. I feel incredibly spacey and detached most of the time, and my energy, both physical and mental, has been primarily nonexistent.

You know the alert that pops up on your phone when you hit 20% and asks if you want to switch to low power mode? Well, 20% has been my maximum for a while now, and it constantly feels like I’m on low power mode. And the alert you get when you hit 10% just telling you to plug your phone in or it’s gonna die? I’ve been at that level a lot, too.

For me, the phone alerts analogy translates in real life to blurry vision, shaky hands and legs, worse motor skills, and slower reaction time, all indicators that I’m about to hit 0% and should get home asap. “Charging” pretty much involves lying down until my muscles don’t feel like rocks anymore and my brain doesn’t feel full of cotton.

So yeah, it’s been an empty, boring stretch of waiting to feel better again. But no one knows when, or if, that will be, and a quiet day in watching movies lost its charm months ago when it became the norm instead of a treat. So, instead of waiting for myself to be able to re-adapt to normal life, I’ve been working on redefining normal life for myself. (And not being super sad about it — cause lately, I haven’t been handling this “I have a chronic illness and can’t do anything I used to do” thing as well as I had been.) There are still useful things I can do from the couch if I work it right.

I bought an iPad, because my old MacBook Pro was heavy and overheated a lot, requiring an additional fan that made it even heavier, and it was starting to seriously hurt to use. I’d been wondering if the mobility and lightness of a tablet could be the replacement I needed, and so far it seems to be working well. As I write this, I have the screen propped up on a table in front of me and a Bluetooth keyboard on a pillow in my lap. There’s no weight, and I can adjust each thing individually. So step one, Replacing My Laptop With Something I Can Actually Use, is complete.

Believe it or not, just holding up a book has started to hurt, too — a problem that’s also solved with the iPad. I think I like it better than a Kindle, because it’s more the size of an open book, and has cute page flip animations that makes it feel even closer to a real book. I also have Irlen syndrome, so I use color overlays to read. Constantly moving them from page to page was annoying, and trying to keep them flat against the curved page hurt, so being able to prop up the tablet and overlay and leave it there is incredibly helpful.

Another thing I’ve been doing is making video health logs, because for a while I was literally too tired to write. They’re handy because while I may not always have a notebook on me, my phone’s usually there in my bag or pocket when something comes up that I want to log (e.g. sudden shakiness, an anxiety attack).

Other than that, I’ve mostly been reading, watching movies, and playing Hogwarts Mystery — the last of which being way more fun to talk about than illness, so tell me what you think of it, what house you’re in, and how far you are in the game!

I found the Canva app and realized I could make nice blog headers really quickly, so that’s honestly the only motivation I had to write this post, and even that fluctuated. With any luck, I’ll accidentally make a graphic I like and want to write a post to go with it again sometime soon.

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