Discussion in 'General ME/CFS news' started by Sly Saint, Jun 22, 2021.
And there it is in a nutshell.
Pacing, however well you manage it isn't a cure. It simply stops you feeling worse. It may, if the stars align with everything else that affects us from temperature, levels of light & sound, allergies and so on, permit a brief lessening of symptoms that feels wonderful and dangerous.
As soon as we make use of that little window - we go mad and have a shower or stand while we brush our teeth - the rug is pulled from under us and the next PEM tide closes over our heads. Then we blame ourselves.
Personally I'm not ashamed, I just know this is something that may make other people hurt me if I mention it. So I don't. Not out of shame, but because it is used to hurt me, including by people who can exert enormous power over my life. Definitely more annoyance than shame, but I basically don't interact with other people anymore so that kind of solves that for the most part.
I'm not sure there's a real difference in outcome here, though.
I'm not now, maybe shame is a bit strong but I was definitely a bit embarrassed by it when I first became ill and it dawned that people now looked at me like a was pond life - sometimes people I had bailed out of trouble of their own making too.
Then having had people behave aggressively towards me I just avoided mention of it unless I was in the mood to sort them out if they started. Sometimes I don't want to spend the rare occasion I get to talk to another human talking about something that affects every second of my life - it's nice to take a little break & have a distraction.
The end result is the same though. I don't discuss having ME as much because of how others react as due to my choice.
Wow, I talked about ME for 7 years straight to anyone who would listen, and then realized no one was interested so I stopped.
I am ashamed, still. Because being moderately affected puts you in that weird middle space between people seeing snippets of the seemingly normal outside-you and the terribly sick crash/PENE inside you.
(Needless to say I'm glad for every inch of health I do have left).
One of my dreaded conversations:
Person: "What do you do for a living?".
Me: "I dont work".
- Akward silence.
Person: "What do you do for a living"
Me: I cant work due to chronic illness.
Person: Immediately looking up and down my body in search of a missing limb or god knows what.
- Akward silence.
What to do with that silence? Then people ask about hobbies, travelling, family. I can't relate. I'm not part of that world.
So I ask questions in return, listen etc. But "hiding" without lying is so stressful and exhausting that it's hard to enjoy the social interaction I crave so much.
i have not interacted personally with anyone outside of my family in 16 years but when i was going out and inevitably talking to people i felt no shame or embarrassment mentioning m e if they were ignorant of the true nature of this disease i saw that as their problem not mine . i have never understood the attitudes of many people who think sick or disabled people are somehow inferior to those who through sheer luck happen to be in good health . considering that at least 20% of humanity has some kind of long term health problem you would think illness would have greater recognition as a burden for those who endure .
Fantastic description. "The next PEM tide closes over our heads", is so descriptive of the feeling. The inevitability of a crash as the symptoms get worse. Of having no other choice but to spend a lot time supine.
Pacing, the only thing we've got is such a fragile preventive. Like balancing on a tight rope. One false move, in the case of ME one small normal activity, and we may slip off that thin rope.
Hiding in plain sight.
I used to think people would think I was a slacker because I might have been out and about on a weekday afternoon. Then I told myself I could as easily be a shift worker, so not to care about what they think.
I agree, @Leila ME is the elephant in the room in social interactions. "What do you do?" A dreaded question. It feels like verbal dodge ball.
From the article:
I was disappointed when I found out that the cyst in my pituitary gland wasn't a brain tumour or causing any problems and wouldn't have to be removed by opening up my face with an X% chance of success. I think I was rather looking forward to it. Anything to stop the first few months of ME.
I have recently blamed myself for trying to play the piano for 5 minutes a day, which led to a couple of weeks of the old symptoms. Why couldn't I just be happy with what I've got? Then again I patted myself on the back for recognising what was happening and stopping it, so all's well.
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