Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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pouty 04/11/2015

Having my typical Sat. night zany, crazy, fed up mood. Have you ever thrown caution to the wind, took a risk and tried an activity that was supposed to be a great stress reliever, but backfired? A few weeks ago I was so fed up with my cfs body and all my limitations. Even one glass of wine makes me ill. How are we supposed to let go and have fun? I get it already, I'm sick and over the hill!! I'm flabby and grouchy, useless on the dance floor and challenged in the sack!
Today, I thought, I'm going to stop on my way home and have a small dinner out with a glass of white wine. My neighbourhood in Toronto has an unusual fish and chips diner run by a Chinese family. Many varieties of fish and they are licensed offering red or white wine. I sat in the clean nearly empty diner and ordered a lovely,greasy battered fish and a glass of white wine. "Ahhhh... I thought, tonight I relax and forget about this ridiculous illness....hmmmm..sweet,tart ,wine dripping from my lips.
And then, when I experience a new level of relaxation...quick trip home,don the jammies and maybe a movie" . Well, half way through my wine, I got dizzy. Then washing down the crispy batter I started to feel nauseous. I paid my bill,smiled courageously and bid the Asian couple a cheery goodbye. Parking my car at home, I started getting stomach cramps. By the time I was brushing my teeth my head felt like a pressure cooker and the floor was moving.
Daad gummit!! I try regularly to do something a little different and I think just the novelty of it bounces my endorphins. However, after my drinking binge, I crossed this off the list. I guess I'm doomed to stick to the tried and true activities: buying a People magazine, singing loudly on the balcony and taking my travel mug of tea behind my building to pursue 15 minutes of dog sightings! Phrummphhh! ( not sure how to spell it!)
PLEASE SHARE ANY MISADVENTURES: We can share the misery.

triunfadora 04/11/2015

It sucks, doesn't it? Sometimes you think, "Just this once, I'm going to do something fun and get away with it." But, no. Poopy, poopy. I tried to show my daughter's friends how to dance salsa at her 15th birthday party. I only danced for literally 30 seconds. For real. Would you believe that my left hip still hurts and that was over 2 weeks ago? I mean, come on. I used to dance for hours and my hubby would throw me up in the air and twist me around and such. Huh! None of that now. I guess we just can't get away with our old idea of fun anymore. I've had to classify counted cross stitch as "fun" these days. Thanks for sharing your misadventure. Sorry it went so badly.

2097Maris 04/11/2015

OMG I can't even count them! After so many years with this crud( and spending most of them horizontal --and NOT in the fun way either), the body does not respond to all the stuff one chalks up as FUN. I was feeling better last week. Went for a weekend with friends to a little cabin on a river. I had one gluten free beer and a few sips of another yummy drink with dinner. Wound up with a raging headache that turned migraine. I also had the gall to dance to a Marvin Gay song, and that put me on the couch for the rest of the evening. The next day was pretty darned low key as well, a migraine hangover.... On the couch all day. There have been so many times that I've walked too far or gardened too much or done just about anything like dancing and paid for it later. I've learned the hard way, however that having FUN with food and alcohol are the worst. No longer having a gall bladder, the idea of eating a greasy piece of fried fish (oh yum, fried haddock or cod or scallops or shrimp!!, Oh MY!!) would make me want to kill myself for days for the self inflicted pain. But the desire is still there, believe me! I can get away with a few bites or a few sips, but that's the limit unless I want stage 4 agony.... Oh yes, it sucks.... This is where the idea of tastes of things helps me cope with the "I can't have that" crankies. Tastes are OK, a full glass or a full meal... forget it. But at least I can steal from someone else's plate for tastes. Have not wound up with a fork in the back of my hand yet.... But yeah, so many times of "well, I'll just try this on for size" and then paying for it ain't fun. AS for fun in the sack: What on earth do you mean? It sounds vaguely familiar, but..... I guess this is one of those memory moments - loss of.....
Thanks for writing Pouty. Great to hear your voice! Sorry your time on the town was such a painful dud.

jcpmoore 04/11/2015

Oh I so understand! My most recent was having a glass of my fav wine a few weeks ago. It was a port, which I love, but not my usual brand. I'm halfway through enjoying it and BOOM! Migraine! That took a day and a half and missing work to go away. Ugh. Before that, I was picking up my eight year old son. Yes, I know it sounds insane, but we do it a LOT. Or we did. I started lifting him like a weight when he was a baby as a crack at the doc who said "don't lift anything heavier than the baby" when I wanted to get back to the gym. lol I kept doing it for years, even through the age of six. Now I only do it occasionally and this time I screwed up several muscles that are still recovering.
Books and hot baths it is, then. And over-sweet wine spritzers. Ah well. At least I can walk. Well, to the bathroom and back. lol

aussiedi 04/12/2015

I have too many stories to tell of times when I pushed my cfs body for a little pleasure.About 6yrs ago I decided to go back to Bali for a holiday with my husband.I knew I was too unwell to travel but I refused to listen to my body.The flight was so exhausting that I wondered if I would make it.My husband had to physically support me through the airport and I spent most of my holiday time flat on my back in the resort.Big Mistake!!.I did go out a couple of times which increased my fatigue even more. As we were boarding the plane for our return flight I fainted.As I fell backwards about six other people behind me , were knocked off balance one by one.There was a panic on the plane.Upon realizing that I was to blame ,the airline staff considered I was too unwell to fly and insisted I leave the plane.My husband assured them that I would be fine and as I managed to regain consciousness they unwillingly agreed. Unfortunately my husband and I were not seated together but just separated by the aisle.Just as we were taking off my husband looked across to check on me.The gentleman seated beside me was looking very distressed and uncomfortable as I had fainted on him and my head was right in his crutch.My husband asked him to trade seats and he happily agreed.
The airline staff were not happy with us and also very concerned . Well you all know I made it back.
So..when I recover ?????? I am planning on a holiday.Maybe I will come visit some of you sweet souls.

pouty 04/12/2015

OMG, hard to believe such a scary and horrible incident can seem so funny later. You fainted into the guy's lap!! ( in Canada we say "crotch") . Sounds like something right out of a California Comedy.
In 1996 I arrive in Malaga, Spain to visit a friend for a week and was unable to walk after the 7 hour flight. I was tearful and panicky begging a British Airways stewardess to help me find my luggage. Well, this was 19 years ago and I looked pretty young and suave. She didn't believe I was suffering but I was at her mercy for the next half hour--she reminded me of those British,rat faced head mistresses whose every word and glare is punitive !!
Thanks to everyone for their feedback--I don't feel so alone (and stupid) .

Lupin1 04/12/2015

I once went clubbing til 2am when I was on the downward slide into CFS. I knew it wasn't a good idea but bowed to peer pressure. Convinced myself I would only go out for a few hours. Threw caution to the wind and ended up dancing and drinking beer. Left at midnight but spent 2 hours waiting for buses home in the friezing cold. That was over 6 years ago and the last time I ever went clubbing.

When I completely relapsed straight after the friends who had pushed me into it dumped me. I think that was the last totally crazy thing I did. The whole, 'well maybe I will be okay after' thing doesn't happen any more.

aussiedi 04/12/2015

Oops yes pouty it was his crotch and not his crutch ha ha.

mywellness59 04/12/2015

aussie -OMG, that's too funny!! And yes, that would be me!! I totally get it.

triufadora -I really miss dancing too! I used to dance for hours and the more challenging the step was, the better. Salsa was the best!! The thought of someone "throwing me up in the air" now makes me nauseas!!!!!!!! Counted cross stitch is actually too challenging for me! I gotta have the pattern STAMPED into the material! hahahaha.... My biggest thrill is going to church!! But I have a fun church so it's ok! Oh, for those good old days!!!!!!!!!

RosaQ 04/12/2015

It's heartening
to read through others' experiences with travelling and
getting out of our set routines. I too sometimes feel 'alone'
in trying to figure all of this out.
I too am sorry to hear that your venturing out for dinner,
Pouty, went down hill rather than up. Lately, I've zoned in on
about three restaurants where I can actually order items and feel
good afterwards. Have checked Indian and Mexican off my list
which used to be my favorites. Did that about two years ago.
Now, I'll do Chinese (no spices or fried items) and some
California healthy type places. I know my body doesn't handle
alcohol so that's not a problem.
Have been fantasying about foreign travel lately with
summer coming up, but remember what long plane trips can
do. Nothing as drastic as Aussidi's trip has happened to me,
but one ham sandwich
which I bought at the airport concession during a layover
landed me in a seat in
the back near the bathrooms on a five hour bumpy return
flight from Central America.
I'm glad Aussidi had an understanding husband to get
her home and help her with the head falling/fainting episode.
Yes. It's all 'funny' in retrospect, but very
unnerving while it's happening.
As for dancing, I can still dance in my living room to
music and that always feels very freeing. I sign up for some
yoga classes and maybe just go to a few. But I do feel it's
worth trying to stay active in ways that work. It's just a matter
of trial and error for me and 'redefining fun'.

hollie9 04/13/2015

After just getting diagnosed I continued to ride my bike 2 hours a day because "exercise is good for you", then couldn't figure out why I wasn't feeling better.

jcpmoore 04/13/2015

hollie9--oh, i totally bought into that one, too! Exercise is the answer to everything, right? I used to push myself for 45 minutes in the gym--cardio, weights, all of it--then follow it up with some time in the steam room. I had no idea why I was so tired after the shower...

hollie9 04/13/2015

So many people and doctors still labor under the good ol' American wisdom the exercise is the cure all for every health problem.

triunfadora 04/13/2015

Yeah, ladies. I have been beaten over the head with the exercise card too. Sure, we need to move, but exercise as we used to define it is out. I like the term "movement for life." That feels better to me and is not associated with all the shaming that goes on with the term "exercise."

hollie9 04/14/2015

Especially when you are first getting sick, exercise will set you back, before you learn how to pace.

TammyDiane 04/19/2015

I miss dancing too. I have been dreaming the last couple of nights that I have been dancing, it was wonderful. I too enjoyed wine before CFS and would love a good meal with a nice glass of wine, but not anymore it makes me feel awful. I told my husband last glass I had to never let me do that again no matter what. I have noticed that I can have a small glass of cognac or sometimes a beer, but I feel best if I don't drink. Alcohol is not a relaxer for us anymore, it just exaggerates my symptoms. I find that I think I want a drink when everyone else is having one, but then I remember how it makes me feel and then I get water.

Sure do miss life before CFS....

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