Caught in the middle

LifeME/CFS

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Crawling back from another sizable fatigue crash. Don’t know what I did wrong this time. Perhaps I’m being punished for vaccuuming the floors for the first time in more than a month. Or for going to my friend’s housewarming for a couple of hours on the weekend. Or for having a busier day at work on Monday. Or for buying some groceries. Who knows. All I know is that I’m punished the most for doing the things I want to do, and it’s cruel and torturous.

The crashes really scare me, because nobody can assure me that they won’t get worse. When I have a crash day/s and feel awful, I’m terrified that I’ve perhaps accidentally reset the illness to a new, more terrible baseline. When you read other people’s experiences of ME/CFS, it happens–they can be sick like me, and then make it way worse by doing too much. They can plummet from the level I’m at now to being bedridden and unable to work. Writer Laura Hillenbrand had this happen [pdf], from taking a cross-country car trip. There’s plenty of similar stories in the terrifying world of the internet.

But nobody can definitively tell me if I should do even less or try to hang on to what I have. Sometimes I feel like I’m clinging on to it all by the tips of my fingers and it’s really hard to hold on, but I really don’t want to let go and fall off the illness cliff, even though that’s what some people seem to advocate. One ‘expert’ says I have to cut back more (I’ve already cut back and given up so much, I don’t know how much more I can bear to lose), another says I should be going for walks and trying to do “as much as I can manage”– which is what I do. But then the crash comes. They all tell me constantly that I should be losing weight, yet nobody can explain how since diet isn’t working without exercise, especially since I’ve lost all my muscle tone in the last seven months. Some shame me for doing too much, others for not doing enough. And then there’s the ones who have made assumptions that it is in my head, or that I must be lazy because I am fat so I probably just don’t want to do anything or work hard, which is of course total bullshit. Since I have orthostatic intolerance problems, it’s also suspected now that I also have either Postural Orthostatic Tachycardia Syndrome or some sort of similar partial dysautonomia causing tachycardia when I stand up or do even the smallest amount of activity–apparently a common comorbidity with ME/CFS. So I am trying some medication to try to help with that–little luck with it so far. So while I’ve encountered some clinicians who are trying to help with the symptoms or who are at least sympathetic, it’s hard not to feel like nobody can really help me, and that barely anyone understands.

With an illness nobody really knows anything about, there’s a lot of useless information out there, and a lot of lies. Crackpot cures without the faintest trace of scientific evidence. Blogs by the undiagnosed yet conspiratorial. Advice from those looking to make a dollar out of desperation. And then the lies to my face. After being told it would take a year to see improvement by one health professional, the logical follow-up question–have you ever known anyone who has recovered in a year?– was dodged more speedily than the treasurer would dodge a question about where the budget emergency has gone. So I’m guessing that’s a no.

Despite my innate skepticism of all things loopy, I find myself edging towards the path of taking more ‘alternate’ measures, even when my rational self urges restraint and wants to see some evidence. But I still wonder…. should I get the flat completely cleaned by professionals to check there’s not toxic mold? Will a maca supplement, or baobab powder, or spirulina help? I felt worse after drinking a some juice the other day, could I have fructose intolerance?

I would definitely say that ME/CFS is not caused by crazy, but it’s understandable that it can turn you somewhat nutty pretty quickly in the absence of real help or treatment.

There’s only been a couple of useful resources I’ve found in all my trawling. I guess I was ‘lucky’ to get diagnosed around the same time as the new Institute of Medicine report on ME/CFS came out in February, so there was a flurry of media coverage of the plan to give the illness a new name and of the more serious recognition of it in the report. One of the better articles on this was in the New Yorker by Meaghan O’Rourke, who writes on chronic illness.

I like this line:

[blockquote]”the fatigue that affects ME/CFS patients is as different from regular, end-of-the-day tiredness as Ebola is from the common cold”[/blockquote]

Yep.

This op-ed in the New York Times around the same time was also good, as was this piece in The Atlantic. Emerge Australia is one of the better local resources. And these guidelines  [PDF] for GPs in South Australia are also a decent overview of the condition (if not somewhat depressing, citing the average window to see some improvement as 3-5 years).

But none of them have answers. So I’m still frustrated, sick and stuck in the middle of lots of conflicting advice.

*Banner image from Hyperbole and a Half.

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