Chronic Fatigue/me

[jojax]

Hi all, I would like to know if any others have been diagnosed with ME. I was gravely ill a few years ago and this has left me with ME. I don't work because of it, but find people don't understand, as I look well. I'd like to chat about it to someone in the same boat. Any comment would be helpful. Thanx

[threegee]

I'm not unsympathetic, and I do appreciate that this is a genuine condition that wasn't recognised by medics until very recently. The only thing that puzzles me is *why* you can't work in some capacity or other? You're obviously as intelligent as the next person, and in no way physically disabled, so what makes it impossible to do something for the community instead of staying home? Even staying home AND doing something for the community if you can't manage a regular job? Not being critical at all, just trying to understand.

[Cympil]

I'm not unsympathetic, and I do appreciate that this is a genuine condition that wasn't recognised by medics until very recently. The only thing that puzzles me is *why* you can't work in some capacity or other? You're obviously as intelligent as the next person, and in no way physically disabled, so what makes it impossible to do something for the community instead of staying home? Even staying home AND doing something for the community if you can't manage a regular job? Not being critical at all, just trying to understand.

Jojax may not be able to work due to the severity of ME, it`s a rotton thing to have. I had it in the late 90`s, it lasted around 10 months. Luckily i recovered from it, but some people don`t. At the time, because of the symptoms, there is no way i would have been able to work..

Hopefully jojax will get better soon

[threegee]

The question I'm asking is what prevents you doing something at your own pace? I can see that that pressures in some jobs would be too much, but it would have to be pretty desperate not to be able to pace yourself doing something useful.

I'm talking as someone who's had a nasty infection over the past couple of years and still brings up lots of mucus all the time, palms and feet are visibly inflamed and my temperature control is completely shot. I'm not sure that all the various antibio's used haven't contributed to the problem now that the original infection is gone. I'm improving, but nothing like as fast as I'd like to, and I'm having to work hard at improving. But although retired I still put in productive hours around the place, and even service a few paying customers a week. What's different about ME that prevents this? I think if we had an explanation of what it's really like, people (and maybe even GPs - some of whom still don't accept it's a genuine condition) would be a lot more understanding. Difficult I know, but worth a try.

[Cympil]

The question I'm asking is what prevents you doing something at your own pace? I can see that that pressures in some jobs would be too much, but it would have to be pretty desperate not to be able to pace yourself doing something useful.

I'm talking as someone who's had a nasty infection over the past couple of years and still brings up lots of mucus all the time, palms and feet are visibly inflamed and my temperature control is completely shot. I'm not sure that all the various antibio's used haven't contributed to the problem now that the original infection is gone. I'm improving, but nothing like as fast as I'd like to, and I'm having to work hard at improving. But although retired I still put in productive hours around the place, and even service a few paying customers a week. What's different about ME that prevents this? I think if we had an explanation of what it's really like, people (and maybe even GPs - some of whom still don't accept it's a genuine condition) would be a lot more understanding. Difficult I know, but worth a try.

I can only tell you of my experience with it, everyone is different, some people are wheelchair bound, others can have mild symptoms (although, i can`t say what their symptoms would be like)

For me, it happened after i had Glandular Fever. It took a while for Docs to find that in the first place, then a huge exhaustion hit me, not just exahaustion after too many hard days work,sleepless nights etc, it just crushed me, totally wiped me out. Even something as simple as blinking took all my energy that i had, i had never had anything like it before, i knew it wasn`t normal but i didn`t have a clue why i was like that. On top of the exhaustion, heavy body (everything felt like lead) i had swollen neck glands, every muscle in my body hurt, painful joints, muscle spasms..then depression kicked in. When you`re feeling like this 24 hrs a day, not knowing what`s happening, getting no answer from Docs, called a hypocondriac etc, no-where to turn..you just have to get on with it.

Some days i finally managed to climb onto my bed, i then slept solid for 3 days, i`d wake up feeling quite a bit better, i`d be up and about, enjoying doing things again, thought i was `over it`..then it would hit me 10 times worse, back to square one again.

You have to re-charge your batteries (so to speak)..but if you over-do things, you`re worse off than before..

So, you do have to pace yourself, and you do feel better at times, but the better parts are short..the bad parts last a lot longer..until things are back to normal, it`s impossible to work, you just haven`t got the energy.

[Mr Darn]

I think i had it, after an accident involving a head injury, but it was nothing near as bad as that.

With me it was a simple case of walking up the stairs required a 10-15 minute sit down, as i went light headed and found i had to physically make my chest fill and empty my lungs, instead of it happening naturally. With me it was like an asthma attack, mostly only coming on if i do something that made me breathless, but sometimes just randomly too.

When it hits, simple things like lifting your arm to point is really difficult, like someone has a bungee rope around your waist, attached to your arm, or like having a 2 stone watch on. Your head becomes heavy, and you become generally lethargic. The only way i can describe it is like a Mini stroke, but everywhere, not just down one side.

Mine lasted for around 6 months-ish, and left as quick as it came.

With me, sitting in a computer chair was fine, as when it hit i could just sit back and relax till it passed, and it really reduced how often it did actually happen. Its also the reason i got into computers in the first place.

With me, computer based work at home would have been ok to do, as long as it was flexi based, ie web design, but i was not nearly talented enough for anything like that.

Luckily for me, at the time, i was unemployed. I also knew nothing about ME, and did not know anything until only a year or two ago. it was totally undiagnosed, but from what i've read on it, its exactly what was happening to me.

Being called an attention seeker was the worst thing for me, and i never sought help from anyone after that comment.

I'd hate to go through it again, but i guess it would be easier now people are more aware.