12/25/18
Well, I have been in relapse mode for 3 solid days now. I know that doesn’t seem like long but,
goodness how I miss my brain. Just a few
days ago, on the 21st, it was my 50th birthday, and I can
remember being at what felt like the height of all my abilities in my
life. I was more physically active and
stronger than I’ve been in so long. I
was sharper and able to quickly solve problems and was mentally fearless. This quality began to return in September but
came into its fullness in October. I was
functioning at 100% of myself. I think,
anyway. But now, I think I’m at about
50%, maybe that. I’m in constant
pain. Different areas. Different kinds of pain. Stuff that’s hard to treat. Palliative only goes so far. And its enough pain that sleeping meds are
required again. I’d been really enjoying
sleeping with the melatonin spray only.
I’m not driving again. Dependent,
relying on others. I’m not able to lift
all the things in the kitchen to make a dinner.
I’m not able to have the same kinds of conversations with anyone that I
had just 4 days ago. I had to call pasta
“that noodlley food with sauce” tonight in chatting with Tim about the grocery
list. I have very limited vocabulary,
and very long waits to use even my primitive words. And I’m not sad about any of those things
recurring. Here’s what I’m likely to
become sad about. (Thank goodness I am
still on my anti-depressant, even though I tried to get my doc to let me come
off it in October. He said, wait until
the holidays are over. ) I have a new
volunteer position as a Patient Pal at Children’s Hospital. I go to the rooms of children and babies who
don’t have anyone to be with them and I keep them company. I hold and soothe babies. I play games with children. I chat to and sing to them. I can’t do this job with this kind of brain
power limitation. I will have to stop
until I have proper problem solving skills again so that it will be safe for me
to be alone with of a tiny sick human.
Even for 45 minutes. This is a
loss. I worked to gain it, and its
something I hadn’t strived for or achieved before. And now, it is snatched from me. No more babies. No more Thursday outings on the train. No more adventures. It isn’t safe. It isn’t prudent. I got to do it only 3 times. Once as a shadow, and twice in my own
shifts. I think I will get to do it
again someday but, I have no idea when.
But, I’ve decided to just allow myself to feel sad about losing this
thing that I love. That’s my
process. My grief. You cannot know how exciting it was to ride on
a train and spend a day with several other people, trying to spread some of
your cheer and hope, after having been fairly home-bound for so, so long. Now, I return to that dependence. To having constant pain as my companion. I’m honestly almost ready to ask for my right
lower leg to just be chopped off already.
It hurts that bad. It’s
humbling. But, I feel proud of how many
good things I did in my good days. I
began a huge EDS Awareness project, and have a group of folks who can pick up
my slack in the work now that I’m making big mistakes. I joined myself and my spouse in a
church. (That’s a weird sentence
structure, lol.) I made sure every
person I care about heard from me, even if only through a message, and of my
love for them. I will be able to pick
this up someday. I don’t know when. And I miss my other vibrant, dancing, smart
self. She is a joy. She is confident as hell. She is fearless. She doesn’t not smile, no matter what. She is curious about herself and her feelings
and her motivations. She tries. She tries hard because she had the spoon
plethora to do so. Now, a spoon shortage
again. Please let me survive with a
smile.
