M.E. or chronic fatigue syndrome info plz

MonkeyGirl

Savvy's right. I will say this though the hardest thing when your ill is saying no it can be hard when you are a healthy person but when you are ill I find people tend to try and guilt trip you by saying stuff like " Well I don't see why you can't come out it isn't as if you do anything else all day." Just stick to your guns if you don't feel well enough to go out don't. *hugs* I hope it doesn't take you too long to recover from your birthday. Just go into hibernation for a few weeks and ignore all calls and people banging on the door. Let the rest of your household fend for themselves for a while ;-) so you can get a bit of energy and strength back.

loopy_lass

thanks for above, not typing too much, aching hands and legs, blah blah, you know what im on about... just to say thanks for post... should get results from BT on 21st...

im whacked... off back to lie down... sorry folks...

loops x

scrimping_steff

Loopy lass and others, I just want to add my tenpence worth to this discussion, I too am a sufferer of M.E and was diagnosed almost immediatly sort of. The offical reason for my ill health is 'suspected M.E'. But it gets me all the stuff I need benifits etc. I think some of the advice here is really invaluable. I had Glandular fever which if you like makes me better off because at least people accept that as an illness. This was over 3 years ago and yes I do still have days when I can only sit on the couch. (I keep my sleep pattern balanced by not going back to bed as others have described here, this really aided me in getting more control on my illness, and definitly made a big difference.) All I can say is my biggest problem now is stress. This aggravates my symptoms more than anything else. I do struggle if I get interupted sleep and long journeys totally wipe me but stress is the mian one. Its is a hard fight we all have because it is an ongoing one and one only fellow sufferers really understand. You are fighting your own instincts and I personally find this tough, but when I achive more than I thought I would and am well afterwards, I do feel satisfied. You are going to have to ignore the negative comments you get from others, they hurt and I think sometimes frighten you and make you feel very alone. But as this discussion shows we are not alone at all. Try not to get sidetracked too much looking for cures, but rather try and work out your own triggers and find your own way of combatting this disibality. Keep trying to achieve things and most important of all, don't give up as you will be worse off. M.e improves the more you fight, you do have bad days and some are really frightening, but make a goal having more ok days, and you may be pleasantly surprised.

Savvy_Sue

scrimping_steff wrote:

All I can say is my biggest problem now is stress. This aggravates my symptoms more than anything else. I do struggle if I get interupted sleep and long journeys totally wipe me but stress is the mian one.

And then you lie awake worrying about the stress and stressing about the long journey you've got to make next week and ...

Sorry, that's not terrifically helpful, but been there, done that!

Relaxation techniques might be useful: someone posted a really easy one somewhere else, sorry I can't remember who but I'm still using it! The tip is that you close your eyes, and imagine a bright clear blue sky, then 'see' white fluffy clouds floating across it.

Phonix

Imo the worst thing about what I think may be part of M.E (What I've experienced) is losing track of time and day when it's severe.

There have beendays when I've been unable to remember what I was doing the day or couple of days before, then then there have been days when I've found it difficult to remember if I'd had dinner. The strain that interputed sleeping patterns puts on my head seems to affect my short term memory. It has a very pronounced effect.

The other major thing which I find very upsetting, is waking up after a reasonable sleep,walking down the stairs, sitting down andfeelinglike utter !!!! physically, and "physical strainfully brainlike" and knowing that will be how you will feel for the rest of the day. That's a very depressing thought and I wonder how much more depressed people would be if they suffered from it.

scrimping_steff

Phonix wrote:

then then there have been days when I've found it difficult to remember if I'd had dinner.

How many times have I flooded the kitchen because I forgot I was washing up or wondered why I am hungry then realised I forgot to eat.

Phonix wrote:

That's a very depressing thought and I wonder how much more depressed people would be if they suffered from it.

I am with you on this one. Considering the first thing you are told when you first go to the doctors is 'Oh you have depression here's some prosac!'

To cheer us up how about your favourite three reactions when someone finds out you have m.e.

1. You just need some prosac
2.Its because you don't wear tights in the winter.
or my personal favourite
3. What you need is a baby.

loopy_lass

great posts, thanks everyone... just been informed close friend has 6 weeks to live... kinda knocked this into a hat, but now i have to travel 5hrs to see them, not lookin g forward to that, luckily i wont have to drive.... both things considered... stress & long journey........ then looking happy & well to help the other person.... i did polish the kitchen & living room yesterday & take the dog out twice... thats kinda stress releiving really as i sit in a favourite meadow with my binoculars and watch the deers, rabbits, foxes & i think ive spyed a badger set... awwwwww now thats relaxing....



Ahhhhhhhhhhhhhh i dont like being grown up......

and i certainly dont need a baby..... nope nope nope lol

loops x

M.E.2-2

I have just had ny newsletter from Mid & West Wales ME Group and thought this website might be useful for others.This is a site that was put together by Claire Wade who as an ME sufferer had problems eating.
Click here to visit easytoswallow.
Hope it is useful.

loopy_lass

ok folks... just been to drs to collect my results, and she tells me i have hight blood sugar and chances are its low level diabetes,... and i have to go on a glycaemic index diet to control it.. but i also have to have a glucose tolerance test done.

anything making sense to anyone? can diabetes mimic ME symptoms?

loops

MonkeyGirl

Um I guess it can loosley I know may partners dad is diabetic and he does get very drained very quickley. He can sit in a chair and is asleep straight away if he has had a busy day and he says it just like some one switching out the light. He doesn't get the aches and pains though but can sometimes get muddled with his words if he hasn't eaten enough fruit.

Maybe you should give this a go for say 3 months? By that time if its diabetes I would of thought there would be some improvment.If no improvment I guess you go back and say look I've done everything you told me too and I don't feel any better are you sure it isn't M.E.

*Hugs* I really hope you get it sorted as it must be a worry for you not knowing exactly what it is either way.