I’ve been struggling with really bad CCI and migraine symptoms today. Trying to get some relief with oxygen and using my minerva brace for better head & neck support/immobilization, even while just laid up in bed. I can’t explain how exhausting it is to constantly fight with my body and figure out what might alleviate the symptoms or what triggered them this time. It feels like every other week I’m having a flare of some kind, and all I want is a few good weeks… to feel incrementally better and not like my body is going to suffer forever.
My last neuro appointment was OK, but not great. The good news was my CCI hasn’t worsened, but it hasn’t really improved either. So since I’m “managing” the suggestion was to continue treatment as is, and have a consult every three months or so to monitor any changes. It’s been hard to process that this is just what I have to live with right now. I have to wake up every day and simply “manage” my conditions and hope it’s a good day and that I’ll be able to get out of bed and work or do things like gardening and running errands.
It’s days like today when I actually feel disabled. The pain is debilitating and the reality of having chronic illnesses is heavy. It’s a dark reminder of what living with CCI & hEDS & long covid is truly like when the symptoms are not managed, and how they could deteriorate me in the future, making it clearer that it’s not a question of ’if’ but when I’ll need more care and mobility aids to manage my health. For now it’s unnecessary, but when the time comes… the new lavender power chair from paiseec will be suuuuper cute 💜💜💜
