Discussion in 'Lifestyle Management' started by Christopher, Nov 2, 2009.
Islandfinn, Thanks so much for that response. I appreciate the kindness and encouragement in it!
If I knew nothing about ME, and the only information I had about it was this thread, I would think that ME struck only lovely, clever, funny, brave and brilliant people.
I would think that one of the risk factors for ME must be high intelligence. I would think that another must be courage. I would be quite sure that compassion and humour were to be avoided at all costs because those qualities were almost certainly causal!
It is simply not statistically possible that you can all be as good and kind and clever as you are.
But, you are
SO true Koan! Wouldn't it be great if this were emailed to everyone in case anyone misses it here?
Maybe a new thread could be started with it - maybe titled something like "patient characteristic extrapolated causes of ME/CFS" - as most people look at a new thread.
What I think is that I do a lot of the things you advise! Particularly taking a step back when about to do something potentially risky. That is so important!
What else did you say???
I had a long, long stretch where I couldn't do my dishes. I still struggle to get dishes done because there are so many steps, and bits, and organization... no dishwasher and almost no counter space - cognitive nightmare! I'm not kidding about no counter space. I have a total of >18 inches of slightly tilting counter.
The kitchen doesn't function. Anyone would struggle with this kitchen; it's tiny, old, tilty and has one small cupboard.
Oh, and I have to stand up in one place using my arms -- it's the hardest think to do. Well, that's an interesting typo ~ it's the hardest think to do. It is!
Anyway, months and months went by and I simply could not get the dishes done. I threw a lot of dirty dishes away just to get rid of them. I would go into the kitchen and scrape away at a dirty dish with soap and my fingernails. I could not understand why doing dishes was so impossible. It took me months to figure out that I needed a scrubber! Months.
It was so revealing for me because I understood that you can't always figure out what's wrong with what you're doing. It can be so painful and so frustrating.
Now, I have made an equally foolish but different choice. I bought a pack of scrubbers and they are all out and all over the sink and dish rack and counter. I have a new kind of disaster.
If not for the fact that the ability to think comes and goes, this would be frightening. But, it comes and goes. We are not in a downward slide. We are skidding about but we right ourselves again. We're ok.
All too familiar - but boy do you tell a wonderful story!
So you've kissed the blarney stone have you? Oh no - wrong connotation - unfortunately, there's no exaggeration or fantasy here. Just plain cold truth depicted with wonderful amounts of humanity and humour.
I can see an amazing collaborative book (for the humour and/or "life" section)coming out of our experiences - just even garnered from these pages
- all proceeds going to forum members, no, scratch that, anyone with ME/CFS whose insurance / disability doesn't exist, won't cover them or isn't enough.
We're not only ok, we're Fatigued AND Fantastic (oh yes Finch, thanks for the reminder) ! Hey - that's a possible title for the book.
okay, back to dishes.
An analogy - pre ME/CFS, I used to travel most years. It took me over 20 years of this before I realized that if I put my laundry in a bucket with some soap overnight, I wouldn't have to scrub like a fiend for hours the next day trying to get them clean! duh.
I then transposed that to my dishes (hadn't figured it out onthat front either) - let them sit overnight in soapy water. A light scrub the next day and, "voila", all clean.
Of course, if you're not up to getting them out of it the next day you can start some interesting smells and growth................. But even if you just drain the water, most of the mess is gone.
After I had radiation for a brain tumor (benign) I went into remission. The year following the radiation I had a lot of horrible symptoms but when they went away I felt reasonably healthy. I figure I was at about 80% for 2 years or so. I decided to try reading again. I had no trouble with a few pages of nonfiction but much trouble with fiction. So I started with Harry Potter and used post its as bookmarks with summaries of what I had read. After I finished the HP series I stepped it up to trashy fiction and now I can read the good stuff (like Conroy and Lamb) but only when I am not crashing. It is still very tiring but I do enjoy it. I have a lot of trouble with noise and I like the silence of a book.
But even when in remission my brain misbehaves. I decided to make my son his favorite birthday cake. I have not tried again because even at 80% it was exhausting. I thought I had nailed it. As I closed the oven door the light bulb went off. I had made a chocolate cake and forgotten to add the chocolate!
Thanks for the giggle susan! What a rollercoaster you've been on!
Great reading strategies. I did something similar with Harry Potter. But haven't progressed much further, despite regular attempts - did enjoy the Potter though!
Koan - I didn't know you were an emoticon prodigy! Amazing! Another rollercoaster depiction
Ah - more titles:
ME, myslef and i - hmmmm - that probably more accurate, but without the typos had meant ME, myself and I
No systems go.
Coffee Making, Aricept and Dreams
I am loving this thread! I can relate to so much of it, especially the worst examples. Yes, for me the cognitive dysfunction has been the worst aspect, more than the low energy, PEM, pain, etc. At age 59 I finally went to a neurologist with a list of all the kinds of brain errors I am making. I included a very long paragraph about one morning's experience trying to make and drink a cup of coffee. I messed up so many ways, and continue to find new and creative ways to mess this up. I could write a small book called Coffee Errors.
Anyway, he ended up offering me Aricept (main drug for early dementia which is cholinergic--helping the brain retain acetylcholine in the system). I took it and now use a half pill 5 days a week. Too much winds me up and makes my muscles more bound, but just enough definitely helps. Also good to stop during an allergic reaction as this drug will add more fuel to the fire.
One of its good effects is that it increases dream recall. I had almost no dream recall for some years before taking it and am delighted to get that contact back. (See the Dream Interpretation Thread.)
Not many years ago I'd have been too ashamed to take Aricept, the drug hawked on TV for Alzheimers, but I'll take anything which helps.
Yours in brain dysfunction,
I like this thread! I think one of the really amazing things is that, with all the neuro problems we have, we still can function.
I'm also pleased to be reminded about the BodyTalk balancing exercise, I'd...uh...forgotten about that...
A few things come to mind as my own coping mechanisms:
I'm getting a little better at figuring out when to push a little further and when to admit it's time for my beleaguered brain to rest. I have hopes of getting healthy on the active b12 protocol, but I will still treasure this skill and try to keep developing it if/when I do get healthy. Our culture gives us big points for pushing forcefully on, but I'm thinking that might be part of what got me to CFS in the first place, and it's actually not sustainable. (Funny about that: neither is our culture)
I've been reading about neuroplasticity and find it fascinating how many ways we have of rewiring our synaptic pathways. This offers great hope: if the old ones have broken down, we can create new ones via different kinds of movement, subliminal CDs, and so forth. Somatics is one area I've been introduced to that specifically focuses on that.
After moving a few months ago, I hied me to the hot springs for some recuperation. I only managed the two-hour drive by virtue of caffeine, which I knew I'd pay for later. I was so tired that a trip up the stairs meant lying down for awhile to recuperate. I was so brainfogged that I was swimming in another reality, doing my best to maintain the illusion of humanness. The guy at the checkin desk commented on how organized I was, because I had all my info and money and so forth in one place - an old envelope with little lists on it. I gave him a really blank look I'm sure. But I realized after that my habit of making lists (which I now do when I am sharp, so that I have something to refer to when I am fogged) - my habit of making lists really helps me cope with daily everything. For those who are already in the habit of making and referring to lists, nurturing this reflex can take some of the stress out of the day I find.
I started to use simple flash games to work with attention, not timed ones- too hectic.
When I had more energy I began working with a neuro-feedback machine which was interesting and challenging. I think it gave me options, ways to work around mental roadblocks, but there's not much you can do in a white out other than just hunker down.
Ah yes, lists. I make lists. Oftentimes they disappear on me. I absolutely don't know what happens to some of them. Like socks in the washing machine. OR I make the list when my function is higher, hit my lower point, and FORGET that I made a list! To my surprise I might come across this very cogent list days or weeks later, and I swear, if I didn't live by myself, that someone was playing tricks on me!
I always put my keys on the hook where they belong or in the pocket of my purse. I always make sure to place my dark framed glasses down on lighter obvious surfaces so when I forget where I placed them they can be found. (So I AM trainable!) But lists . . . I've tried taping them to my wall or to my frig. I even bought a small dry erase board, but forget to look at it. My only fail-safe way with lists is for those special times when I have a big event and absolutely have to remember things is to place them IN THE MIDDLE OF THE FLOOR where I have to step around them, or right in front of the door to the outside, or taped to the doorknob, steering wheel of my car, or the bathroom mirror (where my face would be). But if I do this trick too far ahead of time (several days) I will simply find my way around them without noticing.
Some things that have helped in general:
Both Cholestyramine and Valcyte seemed to help a little. Instead of having to take a hundred detours to get from one thought to the next, it became more like fifty. (Valcyte helped not at all with fatigue or energy, but did lower my afternoon temperature elevations.) But to get around these fifty detours takes mental energy which I don't have near enough of, so I end up with the half-thought thought. Coffee enemas help sometimes (which shows I have detox needs).
The biggest problem I have is the mental fatigue. My mind just doesn't have the juice it needs to function. And the part of my brain that works the least seems to be the executive function part. There needs to be someone home, someone in the driver's seat or the other strategies haven't got a chance. Where has the organizer, the decider gone to?
I (can't) think, therefore I am. (I just am.)
I (can't) think, therefore I am. (I just am.)
Oh gracenote, I'm laughing so hard. What you write is sad but true.
And you write so well! Another writer? The number and variety of talented people on this forum astounds me.
meandthecat - I like the hunker down in a white out metaphor! And the neuro-feedback machine sounds interesting. Do you think it helped long-term?
Sunday, my fellow list maker. I found that crossing items off the list was too messy and made it difficult to read and to determine what was done and what wasn't. So now I draw a little box on the left side of the paper - when the task is completed, a check goes in the box.
It is amazing to me as well that, given how reduced most of our skills and capabilities are, we manage to survive as well as we do. Maybe there's something of the neuroplasticity in our adaptive skills.
I bet there is neuroplasticity in our adaptive skills, and I truly think the amazing thing is how functional so many of us are, even when we're not functional, if you know what I mean.
I tried neuro-feedback and would like to go back to it: it made me feel fantastic the day after, but then I'd crash for 3 or 4 days. After trying it a couple of times I found I had to move and quit, since I couldn't afford the crashes (and not being able to afford the cash was a factor, too). But I want to try again, and I'd be interested to hear the details from anyone who has tried it.
I'll also note that I was a confirmed ginkgo user before CFS, but I don't appear to absorb it well now (i.e. I don't get the sharp-brain effects which used to always follow popping a ginkgo pill). I have tried vinpocetine (an extract of periwinkle, or vinca), and it does seem to clear the mists, sometimes just a bit and others quite a lot. As with most of these supplements, it takes an hour or so to kick in, then lasts for three or four hours. Worth trying, as it isn't very expensive.
By the way, islandfinn, your box-and-check method is way more sophisticated than what I use: I just put a check by the completed item. Drawing the box is way too much work, and I agree, underlines are confusing. (Do you think we should co-chair a seminar on list-making? ) I think the really crucial thing in my technique is that I have been absent-minded since birth, so for decades I've always known that the list is in my bag - somewhere.
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