The brief respite that I was feeling around this time last week quickly degenerated into flaring that quite literally knocked me off my feet. I know what you’re thinking, that flaring ankles must just mean I have to walk on my hands, no big deal. Unfortunately for me, my hands were a big deal. A big, fat, swollen deal. Stuck on the end of a couple of swollen arms.
I’ve spent a lot of the time looking like I’ve just been punched in the face, thanks to my inflamed jaw, which never seems to feel quite straight. The burning that used to stop at my elbows now connects to my jaw via agony in my shoulders and neck. A new contour pillow is helping me to wake up in less pain, however things have been altogether far too difficult lately!
The final, upsetting, development has been increased pain in my knees and elbows. It’s so freaking hard to get comfortable! I need to keep my knees and ankles supported on pillows and there are just no comfortable positions for my arms.
I’ve been battling through as best I can. I’ve had a lot of trouble concentrating, so I’ve been slowly digesting a fantasy novel (Inkspell by Cornelia Funke) and watching a lot of trash tv. Not being able to think is as frustrating as the pain itself, it makes battling the boredom a much greater task. Sam & Lucy are fabulous, if sooky, company when I need to spend all day on the couch, they just never seem to run out of cuddles.
All of this increased pain and flaring is incredibly confusing to deal with. All of a sudden, the rehab and personal care routines that I had worked out are knocked out of the realm of possibility. The plans for crafty things to help me feel more productive are all put on hold as I struggle to even type. I wait for the flare to pass however instead it just gets worse. With pain levels constantly rising it’s almost impossibly to gauge how much movement is too much. Walking to the sink might be ok, or it could send me straight to metaphoric Hell.
Extra pain means extra anxiety. Is it just a flare? Is this a spread? Will I have to deal with being at this level of pain forever? How can I take care of myself at this level of incapacitation?
Extra pain for extended periods of time also puts stress on those who care for me. When I am unable to prepare myself food and do household chores, those responsibilities fall onto other people and become their barrels of stress. I hate feeling like a burden and no amount of reassurance in the world seems to make me ok with this. The only perspective that brings me a little peace is to imagine that the roles are reversed. Would I be as caring and supportive as my loved ones are? Of course, I simply can’t imagine anything else, I would be there for everything they needed.
I am going to see my pain specialist tomorrow to discuss what’s been going on. I am hoping that perhaps there is another drug choice that will help me or that he might be open to trying another ketamine infusion. If my condition continues to deteriorate, I am going to end up a screaming vegetable in a nursing home, so I am about willing to try anything. Rehab alone is failing me.
Love & Wishing Flares Away,