up and down

I am happy I have found this, maybe because I know I am not alone with the way I feel sometimes. I don't feel as scared when I get down.

[swedishblue]

I get scared and down when I know I haven't exactly deserved this hideous fatigue, trying to fathom what the heck did I do, when's it gonna end?! It's great being able to share this on here with likeminded people, who are in the same boat (suffering cfs). Nobody, that's nobody, understands unless you're in the same boat. Its a very isolating and lonely way to be, having to shut yourself away just to scrape a miserly bit of energy. I'm glad for being able to share here just how it is. If anyone has a magic bullet cure, please shout about it!! I do nothing but rest interspersed with gentle exercise. At work (yesterday) I'm rushing around and on a crest of a wave, thinking this feels okay, its an adrenaline rush. Today is Big Payback!

[bluesgirl37 in reply to swedishblue]

Hi Swedishblue,

oh flare ups, they are awful aren't they? I have M.E,/CFS too (though I usually post on here regarding my partner who had a TBI) . For ten years now. I 'm better now than I used to be but the only magic bullet I can share is pacing yourself, which you sound like you already do. Very difficult to accept your limits when they are ever changing. A bit like trying to surf on a magic carpet.

I work part-time and find I spend at least one day off usually in bed or laid up on the setee , also a couple of hours after work doing the same.

I think the trouble is many people think that fatigue is the same as tiredness, if they haven't had any experience of it , which you and I and many other people on here know is totally false.

A big hug to you and hope your crash passes soon xxx

[swedishblue in reply to bluesgirl37]

Hello Bluesgal, thanks for your kind reply. I also post on cfs and the endocrine site. I have a bi, an endocrine thing and cfs/me. How lucky am I??!! I find myself in a precarious 'chicken and egg' situation. Has the bi caused the endocrine problems - which I think they have - which then gives me the cfs. Up and down we go. Do you know the root cause of your cfs/me? Yes I'm in a crash now, which generally passes by Wednesday in time to work again, and so it goes.....

[bluesgirl37 in reply to swedishblue]

Yes it's very tricky isn't it Swedishblue. I developed ME/CFS after catching Epstein Barr virus. Two members of my family also had it so think we have a genetic predisposition.

I'm a lot better than when I first developed it, I used to sleep 15 hrs a day and had to give up work for a year and a half. Wasn't able to walk more than a few steps. So every day just feel likes a blessing honestly.

Am enormously fortunate to work with a brilliant crowd who are like a second family and take the condition seriously, and don't question it at all. I've been there for five years now .

Lordy lordy you have a lot to deal with. You must be made of titanium! I hope you feel a bit less ill soon xxx

[bluesgirl37]

Hi Aqua it is a great site here with many supportive people. It's been massively helpful to me . You are certainly not alone xx