Ch.64 Exhaustion and Relief
These last few weeks have been physically and psychologically exhausting for me as Pat has endured the symptoms of bullous pemphigoid, this strange auto-immune disorder that blisters her skin. It’s been hard to sleep well, in part because Pat frequently cries out in pain during the night. But mostly it’s been a case of nonstop worrying while feeling almost helpless.
Fortunately, though, Pat has responded well to prednisone treatment. Since she began taking prednisone two weeks ago few new blisters have developed and the older ones are slowly fading away, giving her skin a chance to rebuild itself (The blisters destroy the outer layers of the skin, which is one reason it is so painful). Today Pat was able to take a brief country drive in the car, our first since this disorder developed.
Today felt almost normal. It’s funny, though, that “normal” now includes Lewy Body. Believe me, when I say that there are things worse than Lewy Body I can now personally attest to that fact. Bullous pemphigoid is far worse.
I’ve begun to relax a little. However, bodies tend to adapt slowly to changes in the environment. Although intellectually I realize the worst is over, at least for now, I think it will take another few days, or more, before I feel truly safe.
Pat is slowly tapering her prednisone. Apparently not even her dermatologist, Dr. Galbraith, can predict whether Pat’s symptoms will reappear. That’s another reason I cannot completely relax.
Meanwhile, Pat still is using her gumption to challenge her pain. Today she told me she’s going past mere survival and finding joy again in her life. Plus, she’s tried to reassure me that she is doing ok. Pat recognizes that right now I’m too tired out to help her much so she’s emotionally helping me instead.
Pat’s comments on Exhaustion and Relief.
We’ve always been a team and Ron is part of my joy and I want him to continue to be that.
I still hurt a lot but I’m helping myself more, so Ron doesn’t have to help me so much and that helps me feel stronger.
My Dad when he was alive taught me to have gumption. I’m proud of that. My gumption brings me joy when I can do something unexpected. I feel a challenge and that brings me joy when I do it.
And I love bringing Ron joy too.