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There are 27 bones in each hand and about 123 ligaments and there are times in the day when they all seem to shout at me for attention like one load roar. Also, morning stiffness, what a silly name. Quite some morning, I tell you, it goes on and on.
At the back of my head I have stored the information from my last medical appointment, namely that I could either increase drug A or change drug B to drug C or maybe it was the other way around. I politely suggested to wait a bit longer explaining that I would like to pretend I could have a life without so much medication, at least until after xmas and the new doctor smiled from behind her desk and said, sure. For a while.
It's that easy. At least in my mind.
Now that I have officially switched experts, I wrote a long thank you letter to my lovely immunologist and sent it with a box of the best Italian dark chocolate covered torrone, wrapped in brown paper. Doctors are not allowed to accept gifts from patients, officially. But she will. I hope so. I will miss her, we had some good laughs.
Anyway, most mornings I wake and while I carefully move my hands and feet into flexibility, for a while it makes - surprisingly - a lot of sense, all this, life, death, being and stuff. Here in my bed, in my warm relaxing ocean of positive thinking, my mind humming with "Hell yes, I know how it works" and "I get it, I can handle it" until
eventually this huge wave rolls along which takes me away screaming "I will never understand!".
Maybe it's a winter thing. Clocks change on Sunday.
When I was with my friend yesterday and the doctor was describing the drug's effects that she will need to be taking he said, "When you wake up in the morning, you may feel aching and stiffness but it will pass as the morning goes on," and I thought to myself, "How is this different from life?" He was trying to make it sound like oh...that's nothing...and compared to what medications and treatments she COULD be on, it is not so bad but this doctor is young and still healthy and I try to remember back to the days when I woke up every morning and got up and nothing hurt, nothing at all, and it's like a fairy tale.
ReplyDeleteOh honey. Oh honey.
I'm so sorry because although I don't know what you're going through, I do know enough to know that it's hard. It's real and it's hard.
I don't understand either.
And our clocks turn tomorrow night as well.
Hugs.
ReplyDeleteThat's all. What else is there?
Sweet that you have that moment while warm in your bed and every thing seems...ok. And it's good that the new doctor seems open minded, perhaps empathetic to your situation. Perhaps the moments will last long then. I hope so.
ReplyDeleteIf I even have a few moments when "life, death, being and stuff" makes sense, I count it a good day. It is so rare. I had one of those moments this morning, too, lying in bed alone after T got up. The feeling just came to me, unasked for. But it was quite welcome. I wish it had lasted longer. I hope your doctor accepts the chocolate.
ReplyDeleteSometimes I wonder about this complex body, all those cells and muscles, bones and blood. All doing what they do while we wait to see in the morning what has gone awry in the night. I love that highway sign!
ReplyDeleteSo true, that sign on the road! When I first glanced at Colette's comment I read it as "life, death and being stiff!" Which made me laugh, albeit ruefully, because that about describes it. My doc recently tried to persuade me to a higher dose of the nasties which function as "unstiffeners." I resisted as I don't want to be on any more than absolutely neccessary. You have such a positive attitude, it seems to me, I hope you'll be rewarded with more good days than bad.
ReplyDeleteI know about morning stiffness, which is really pain, lots of pain as I try to work in the muscles and joints, to marshal them all, let them know, okay, we're moving now, carry on.
ReplyDeleteWhat can we do but carry on. I am sorry you are in pain. Like Mary, I literally ache for the time when I jumped out of bed in the morning without a thought. I keep the pain to myself most of the time. I imagine I'm saving the sharing for when it gets worse. But it's already worse. Don't mean to complain, only to say, I understand the not understanding, and the brave face. Hugs, my friend.