May 12 is International ME/CFS Day – Rant

You’re still ill?

It’s May 12 again – and, for another year, CFS – or ME – or CFIDS – or Yuppie Flu – or whatever the heck this is, it’s still with me.

Another year has gone by – and today is one of those typical days when I question my own sanity, because my brain is like a broken clock: right twice a day. You all remember analog clocks, right?

And too many people think that if you have something for a long time, it must disappear. It doesn’t – I do. I just stay home, do the few things I can, don’t give anyone any trouble – that takes energy I need for more important things like breathing.

I don’t know what the researchers are doing, but all the people I know who have this THING, the people in my real-life support group and the online one, used to be productive, hard-working, tax-paying citizens – and now the majority of us aren’t.

Living with CFS

I manage this – as well as I can. I find ways to shift the couple of coherent hours to the morning so I can write – or, when necessary – to the afternoon because I have to talk to some new doctor and I don’t want to appear a total nitwit. Plus it’s dangerous to be incoherent when talking to doctors – it’s bad enough when you have your wits about you.

When absolutely necessary, I can drive somewhere: I set up a bed in the back of the van (preferably horizontal, especially for longer trips), and I drive an hour, take a rest stop, drive another hour, take a half-hour nap; repeat until I get there.

The whole managing thing gets so annoying.

It is tiring to be exhausted all the time, to have cotton for brains, to have pain, swollen glands, a low-grade fever – whatever your version of it is. And that’s only a few of the major symptoms.

Adding exercise – not

I’m fighting the back problems I have added along the way – I’m sure they are compounded by not having the energy to move much. But yoga is lovely: the solution may be something call Supported Backbend. I get into the right stretched position – and hold it for 10 minutes while everything relaxes: just the right kind of ‘exercise’ for someone who 1) has no energy, 2) and has this lovely addition to CFS called PEM (which means Post-Exertional Malaise) which means that your are even more exhausted after exercising – completely out of the normal range of ‘tired’ – and it can last for days. PEM should be renamed Post-Exertional Collapse – that would explain it better.

Which makes it very hard to build to anything.

We try. We do two minutes today, skip a day, do another two minutes – hope to kick it up to 5 in a month.

Or we do things anyway – and pay the price of a couple of days staring at the wall, unable to muster the brain cells into a straight line for some thinking.

I miss my brain most of all

The Department of Energy spent a lot of money on training me to be a researcher in plasma physics and getting me a Ph. D. That money – and the time I spent in grad school and early career training – wasted.

When my brain is working now, the Hard Sudoku takes less than six minutes. Today I played them – there was no doing anything else after this particular past week – and it took 22 min. for the last one. Interestingly enough, I figured it out. It just literally took almost four times longer than normal. Many days when the brain won’t go fast, it also won’t do accurate. At any speed.

You can live with it – or you can make it worse

I have a relentlessly cheerful attitude about the whole thing, because I have decided that I’ll do my best, fight what and where I can, and wait until some researcher out there stumbles on the solution – and hope it’s as simple as H. pylori being the cause of stomach ulcers – instead of the vague ‘excess acid production’ nonsense.

I try not to let things ruffle me – because excess adrenaline lasts a very long time in my bloodstream. I can’t think, and I’m extra wiped after having a strong emotion – so I avoid reacting.

A cure, please, medical researchers

Do I want it gone? You betcha. Can I get rid of it? Apparently not. As usual when doctors fail, there is a whole huge sub-culture of people who 1) claim to be cured, and then 2) want to sell you what did it for them. Scams abound when people are desperate.

I will believe someone has found a cause and cure when I see it reproduced and explained. I hope that happens in my lifetime. AIDS is a chronic illness that is now managed fairly well with drugs – that is not appealing, but is better than having it kill you quickly or slowly.

I’m only ranting because it’s today – and I’m hoping some bright experimenter somewhere will have a good idea, and it will be the right one, and I can go on with my life.

Doing the best you can with what you have left

Meanwhile, I write – because I sort of can. I was going to say ‘it keeps me off the streets and out of trouble,’ but that’s silly: I don’t have the energy to get out onto the streets, and trouble is something I only dream of having enough energy to do.

Otherwise, as I said, relentlessly cheerful (with a tinge of despair sometimes), because that’s all you can do. The alternative is to face the reality and be completely depressed all the time. And nobody wants a sick person around who is also depressed.

The future

It would be kind of nice to have something or someone to blame, as when you get run over by a truck.

Say a prayer with me, those of you who believe – the rest of you may cross your fingers or toes. I would really like to go back to being a normal human being. I promise I’d do something useful with my life if I got it back.

I am grateful at least we are being taken a bit more seriously now – the economic cost alone, leaving aside the cost in human misery, is vast. Since it is perfectly clear that it isn’t in my head, nor is it something I can wish on myself, that means there IS an answer out there. You go find it: I’m too tired. I’ll cheer from the sidelines. There must be hope.

Thanks for listening.


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