Dissociated Thoughts

When Diseases Decide to Flare

9/3/21 – 5:00am Prompted By Life

I’m writing this now to have documentation of what is going on with my body currently, before my questionable memory erases much of it. Who knows, my healthcare team might find this useful...

Pain level right now is around 9.

Yesterday evening, a pressure was building in my head right behind my eyes and extending up and back until it felt like my head was filled with concrete or some other very thick substance. Somehow, finally, I was able to go to sleep, a fitful dreamless sleep but sleep nonetheless. I awoke early this morning to the assertion that I am in another flare. I knew it was coming, I haven’t felt “right” in a few days, just didn’t figure it was going to hit me like this. I mean, it was only two days ago that I took my weekly dose of Methotrexate and I take the Prednisone and Hydroxychloroquine every day as prescribed. Right now, I should be feeling great. But instead, my skin feels like it is crawling, like a nest of fire ants is stinging me just under the first few layers. Every inch of my body itches but scratching just creates pain. Pressure creates pain, even the smallest amount. My nerves must be seriously messed up. Imagine not being able to be touched – so much so that the pressure of your clothing against your skin causes pain. That’s where I am right now. If I press really hard or scratch non-stop, it gives some relief, almost feels good. Maybe it feels good because it stops the itch for the short amount of time that I’m doing it. Doing so isn’t feasible though and would cause more harm than good. But I can’t sleep anymore today in any case. Laying down just creates too many pressure points all at once while the rest of me is still crawling with the itchies. Even the insides of my ears itch.

I’ve noticed a weakness in my limbs as well. Trying to walk from my bedroom to the kitchen to get a cup of water was torture. It’s like I woke in an alternate universe where the force of gravity is a lot more than what it is in reality, pulling me down. My shoulders, legs, head, and arms seem to be experiencing the most pain right now. My bones ache like they’re filled with liquid lead and all of my joints hurt. My head hurts and it feels like I’ve been clenching my jaw tightly for some time even though I am making a point of keeping it slack. It all hurts, all of me, to the point that I am nauseous. My hands are swollen so much so I cannot make a fist. - And I’m shaking. I’m wondering how long this will all last before the seizures are triggered again; the big ones, not just the petit mal that happen multiple times a day. I noticed yesterday my eyes fluttering and trying to roll back. I never did go into a grand mal though. Speaking of eyes, mine are super dry again. The right one looks like tiny blood vessels have burst within it, making it all bloodshot. And I couldn’t cry if I wanted or needed to; the tears have dried up too. I’m a mess.

While I am cursed to have these ailments the rest of my life, the flares themselves come and go – and I never know when or how a flare will present. This one just hit me hard after a month or two of only having mild ones. And this one is one of those that makes me wish I could end it all. Whichever diseases are causing this flare, I know it won’t last forever even if it seems like it right now. So, I’ll ride out the pain and discomfort. Lord knows pain killers would only be a temporary fix and probably do more harm than good.