Standing is often more exhausting than walking, I will always sit down, as soon as possible. At my local bus stop, there is no seat so I sit on the window ledge of the shop, no doubt peeving the owners. The other day, waiting an interminable amount of time for the green man at a pedestrian crossing, I felt the very life drain from me and I had to step back and lean against the nearest wall, a beauty parlour recently closed down. It occured to me later, this must have looked odd, my leaning, one knee raised up - I may have looked like I was soliciting.
16 comments:
In the 1940s my father had TB and was hopsitalised in a sanatorium for 2 years. Eventually he recovered but was warned to be especially careful about the way he used his energy reserves:'Never stand if you can sit, never sit if you can lie...'
quite extreme but he stuck to it for about 5 years after he was discharged and recovered sufficiently to have a very busy and successful career. I try to stick to teh same rules now though my GP 'poo-poos' the whole notion -- but then he doesnt have M.E.
hi nmj
have you ever been dx with P.O.T.S? two years ago just after being dx with m.e (although had the crafty little disease much longer) i was dx with postural orthostatic tachycardia syndrome, i was always a leaner as a kid, always preferred sitting then standing. wasnt until things came to ahead, i became really ill that i was dx. theres a few simples tests you can do at home to see whether you may have the condition. poor mans tilt table being one of them. if by any chance you have the condition and find out the cause symptoms can ease or cease. unfortunately for me the cause was a genetic condition EDS. so they treat the symptoms.
sorry to waffle, the leaning and sitting sounded like me. the blood pools in the legs and hasnt the oomph to be pushed back up to the heart and brain, making you dizzy, and tachycardic, amongst other lovely problems! x
hey cusp, i guess it's more essential than optional, it's not a case of trying to sit instead of standing, i have to sit!
hey em, i dont' think POTS, i just think the classic 'orthostatic intolerance' of ME (or is there a spectrum of POTS, could i have it mildly?)... the severity varies all the time, i do get dizzy, but it's more like my muscles have no strength left in them and i must sit or i will sink. i also get pain from standing. but i am so used to it & don't usually think about it unless i find myself leaning against the wall like a lady of the night. i also get waves of dizziness sometimes when i walk or stand up. but it is not persistent, thankfully, it comes and goes. and i've had - periodic - racing heart since coxsackie virus. it is usually when i am lying down, & stimes it races so much it is frightening, but again not all the time.
Was also thinking that one of my most uttered phrases is 'I have to sit down'. And the word verification (I am not signed into my own damned account) is 'chaen', which is a wee bit spooky as i was living in caen in france when i got ill.
I am not even sure: is POTS a subset of orthostatic intolerance or are they the same thing?
My concentration also is shot to hell if I have to stand for too long. I virtually can't think straight.
Okay that's enough from me on my symptoms.
I was diagnosed with POTS recently, and my ME is severe. But I remember when it was less severe, and like you, when I got up or went out I would experience an urgent need to sit or lie down, and would often collapse if neither of these options available.
When you do have POTS, you're told that your ability to think straight is shot to hell when upright, because you're not getting enough blood flow to the brain. Also the muscle weakness is caused by the same mechanism - not enough blood and therefore not enough oxygen circulating to muscles. I go limp like a rag doll.
It certainly sounds like you have some form of orthostatic intolerance (and yes, POTS is a subset I think of OI), even if you don't think it's POTS. I wonder if there is any point in getting tested - there may be drugs which can help a bit.
Sorry, I feel really strange leaving unsolicited medical advice on your blog. Maybe don't publish? Will stop now! x
Hey Amy, I have never collapsed or anything - though I do sometimes get feelings of total spaced out/ 'unreality' - and it feels very similar to PEM, except I also get it from standing. This is why I don't think POTS, though def some kind of OI going on. It wd explain why I often drop my change at supermarket check out, I have used up all resources available. And it varies considerably. On a better ME day I can stand longer than on a crap day. I know that you have a horrible time with POTS and my heart goes out to you.
Standing is worst for me as well, I try to avoid it as much as possible and get upset when people don't understand. Tomorrow I will be going to the police-department to get a new passport. I have been warned there might be up to several hours of waiting, and I'm already dreading it..
I have the same OI symptoms nmj...supermarkets are hellish-nowhere to sit then the interminable wait at the checkout. Often my legs just "go" and I have to lie down wherever I am (mortifying). I've been researching it lately from my bed. OI has subsets: POTS (where heart rate shoots up on standing still) and NMH (neurally mediated hypertension) where blood pressure drops on standing-these people often faint). You can get both too. I got myself a wrist heart rate/blood pressure monitor which gives you some feedback and you can link it with the symptoms you are having. ME/CFS society of Australia posted this webinar on OI which I found very interesting and a relief-practical suggestions to try myself. http://www.youtube.com/watch?v=5iF30TVLaRE
this is also good: http://www.cfids.org/webinar/cfsinfo2010.pdf
..and on soliciting...memoir called "In My Skin" by Kate Holden. A local (Melbourne) gal. It's pretty un-put-downable.
Hey S.Cat, I understand completely, I hope it wasn't too awful and you got to sit down. And there's always the fear that when you say you need to sit down, no one believes you, you look young and healthy.
Hey Anna, If I were so severe that I had to lie down, I would def seek further medical advice. Like I say, I usually manage to work around it, it is just another ME symptom that is always there. I had it today at a bus stop and I paid attention to exactly how I felt: like my calve muscles were tightening and pulling me down like gravity. Will look up the memoir, thanks!
Why is standing so hard? It's like a defining symptom of ME.
I have a vision of you standing in front of the shop in the style of a black and white art house film, playing the role of a intellectual/writer of course.
Hey Dig, I did read somewhere, it should be diagnostic, not being able to stand for long - can't recall where...ha, love your romanticism!
Standing around for more than a few seconds should be considered a health hazard.
Sit or walk, or run, or prance along the sea--whatever. Standing sucks.
I don't have any particular health issue re: standing.
But standing sucks. It's (somehow) not right.
Rick, you make me smile.
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