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stephbgI was asked a reasonable question this evening, vis a vis medical investigations: What happens next?
I still have the -oscopies scheduled for September 1, and a review of all results after that, but really nothing in the meantime. Nothing in the results leads me to expect any comment from the specialist ahead of that schedule. I will no doubt tinker with my diet a bit, and reproduce some trials with supplements, but I'm in a bit of a limbo.
Limbo is grimbo. Forewarned and thus hopefully forearmed I hope to avoid the inevitable bout of depression that follows a worked-out vein of medical inquiry. If I'd been firing on all cylinders today I would have requested a referral to a neurologist while at the GP, which might have served to fill in the gap in the schedule. The irony being that the lack of cylinders is *why* I need to see a neurologist.
I can't multi-task like I used to; I can't juggle multiple concepts in my head at once to make them fit together. My lateral processing capability has gone south. My working memory capacity is close to nil. I can make conversation, jokes and banter, but these are cheap in terms of cognitive load. I can do stimulus-response wit; but I can't hold the contents of a technical chapter in my head to restructure it for best effect. I can't plan a sequence of diagrams to identify and teach a series of technical concepts in the most efficient way. I can't bridge two chunks of text so that the different concepts flow in to one another. Sometimes I am completely unable to make even simple decisions: I can't model the two things in my head at the same time to compare and contrast. Word recall suffers under these conditions ("press conference" defeated me for days). If I can't do all this *properly* then I can't do it at all.
I've made several attempts to lower my expectations and try to structure work in such a way that I use the capabilities still left to me, but this just means I do the simple bits of writing or editing and come to an abrupt halt when the work becomes more complex and beyond my current capabilities.
I still think I might be able to rattle off a short story under these conditions, but a quality novel would require my mind to be in several places at once, and that's off the menu for now. Neither would constitute a replacement for work for a very long time. Spoon preference MUST go to struggling with paid work. Or must it? Perhaps I should take a holiday from my suspended job and pour all those spoons into that short story for a few days at least.
Flowers for Algernon gives me nightmares.
So, perhaps a return to therapy to sort out this fear is in order. It's come up before, but usually in the context of fear of loss of physical capabilities and energy. I like the idea of taking a break from the fear and yet being in some sense productive. Hell, it's why I write this blog; it makes me feel like I'm achieving something, sometimes. I prefer to educate and entertain; but I need to entertain.
I think also that I should be more open to the possibility of having fun with some of my limited spoons. Allow myself to work on a craft project once in a while. Read something longer and more challenging without feeling like it's stolen time.
This new regimen will at least give my body a bit of time to respond to the diet and supplement changes I plan to make. Is it time to finally embrace my illness? Is it time to stop saying that I hope and plan to go to work every day next week, at least without a backup plan? For example: On Wednesday I would like to go to work. If that's not possible perhaps I'll have the energy to go to the zoo. Failing that I could stay home and spray the weeds, or sweep the porch.
That's it! Every day must now have tiers of plans to correspond to the spoons available. A middle tier plan might involve housework, but the day is not lost if I drop to a lower tier plan involving posting a letter and reading on the couch.
It's a plan. I must unshackle myself from the desire to put every fraction of energy into work, and refocus on feeling the best that I can feel. Work will follow.
I still have the -oscopies scheduled for September 1, and a review of all results after that, but really nothing in the meantime. Nothing in the results leads me to expect any comment from the specialist ahead of that schedule. I will no doubt tinker with my diet a bit, and reproduce some trials with supplements, but I'm in a bit of a limbo.
Limbo is grimbo. Forewarned and thus hopefully forearmed I hope to avoid the inevitable bout of depression that follows a worked-out vein of medical inquiry. If I'd been firing on all cylinders today I would have requested a referral to a neurologist while at the GP, which might have served to fill in the gap in the schedule. The irony being that the lack of cylinders is *why* I need to see a neurologist.
I can't multi-task like I used to; I can't juggle multiple concepts in my head at once to make them fit together. My lateral processing capability has gone south. My working memory capacity is close to nil. I can make conversation, jokes and banter, but these are cheap in terms of cognitive load. I can do stimulus-response wit; but I can't hold the contents of a technical chapter in my head to restructure it for best effect. I can't plan a sequence of diagrams to identify and teach a series of technical concepts in the most efficient way. I can't bridge two chunks of text so that the different concepts flow in to one another. Sometimes I am completely unable to make even simple decisions: I can't model the two things in my head at the same time to compare and contrast. Word recall suffers under these conditions ("press conference" defeated me for days). If I can't do all this *properly* then I can't do it at all.
I've made several attempts to lower my expectations and try to structure work in such a way that I use the capabilities still left to me, but this just means I do the simple bits of writing or editing and come to an abrupt halt when the work becomes more complex and beyond my current capabilities.
I still think I might be able to rattle off a short story under these conditions, but a quality novel would require my mind to be in several places at once, and that's off the menu for now. Neither would constitute a replacement for work for a very long time. Spoon preference MUST go to struggling with paid work. Or must it? Perhaps I should take a holiday from my suspended job and pour all those spoons into that short story for a few days at least.
Flowers for Algernon gives me nightmares.
So, perhaps a return to therapy to sort out this fear is in order. It's come up before, but usually in the context of fear of loss of physical capabilities and energy. I like the idea of taking a break from the fear and yet being in some sense productive. Hell, it's why I write this blog; it makes me feel like I'm achieving something, sometimes. I prefer to educate and entertain; but I need to entertain.
I think also that I should be more open to the possibility of having fun with some of my limited spoons. Allow myself to work on a craft project once in a while. Read something longer and more challenging without feeling like it's stolen time.
This new regimen will at least give my body a bit of time to respond to the diet and supplement changes I plan to make. Is it time to finally embrace my illness? Is it time to stop saying that I hope and plan to go to work every day next week, at least without a backup plan? For example: On Wednesday I would like to go to work. If that's not possible perhaps I'll have the energy to go to the zoo. Failing that I could stay home and spray the weeds, or sweep the porch.
That's it! Every day must now have tiers of plans to correspond to the spoons available. A middle tier plan might involve housework, but the day is not lost if I drop to a lower tier plan involving posting a letter and reading on the couch.
It's a plan. I must unshackle myself from the desire to put every fraction of energy into work, and refocus on feeling the best that I can feel. Work will follow.
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no subject
Date: 2009-07-03 11:30 pm (UTC)Yes. Also I've learned not to count "Lying on the couch doing something "fun" because I have no other option" as leasure time. Fun deserves spoons too!
Good luck with it all.
no subject
Date: 2009-07-04 04:45 am (UTC)Perhaps yours is occupied with trying to find the patterns in your illness: trying to solve that particular puzzle is taking up all operating space? Maybe it is working on finding a new way through after the loss of your cherished BB? The best understanding of grief I've ever seen was drawn out on a piece of paper for me just this week.
A mark for the person, and then a circle and shading placed over the top. That's the grief. And then a wider circle drawn outside - the person growing a new self around the grief. At any time, of course, we can return into the grief and it is as fresh and intense as ever. It doesn't heal, but we grow bigger and wider and deeper around it. (Hugs, sympathy, loves.)
I feel that 'feeling the best you can' is a good plan.