What getting Myalgic Encephalomyelitis feels like (to me)

[SilverMorpher]

this is really precise, thank you for your effort, and yes, it is always comforting to hear of others going through the same hell (even if it would be better if they didn't), and know that it is really so, and it's not all in the head as they say, that attitude is so hunting

[kittycath1]

Thanks for posting this, your story is almost identical to mine. Im so sad you have had to go through it too, but am comforted to know I'm not alone and not imagining these things..sending you many well wishes :)

[kittycath1]

Thankyou for posting this video. I am so sad that you are also having to go through this, but I am comforted at hearing your description to know that I am not alone, that I'm not imagining this. I've been ill for 12 years and did the same as you, was only about 40% but due to lack of medical belief pushed through it + collapsed about 3 years ago..Ive been building myself up since then but its a long slow process. I hope you feel better soon, I send u good thoughts..

[AHummingbirdsGuide]

@kittycath1 Hi, yes, me too, building self up slowly...so slowly! May it happen faster for us both and all in this position!:)

[Humanistischen]

Thanks for posting this. Your explanation is so accurate it makes me remember how bad I was.

[gasjam]

Thanks for this video. Diagnosed almost 8 years ago I know had I been able to rest (e.g. not go to work) at a particular point of this illness, I would never have been affected so seriously and would probably have got back to work within a year. My G.P. would not sign me off work after 4 weeks of severe symptoms - I tried to go to work for a few months and the result was total collapse.

[komodiakarma]

The hardest aspect of getting people to understand this ILLNESS is how fragmented/ random and Comprehensive

the symptoms are.

Due to the fact that I am Outrageously cantankerous when it comes to Dicktors....and uniformed but well intended believers of the' Positive Thinkers club" . I now give them the EVIL EYE...and spit up green pea soup when they start to say. SOMETHING STUPID to me like ...'Well, we all get tired...! '

One of my worst symptoms.. SMART ASS !

But I had that b4.

[kaazoom]

Thanks for yet another helpful, informative video.

[CRAIG11235813]

Jodi, You are brave, you are strong. You are an inspiration. Thank you for these videos which help to put across what ME is really like.

[AHummingbirdsGuide]

Thanks J!:)

[neelubird]

Excellent vid (as always). I just wanted to add to your comment about overexertion (just in case some ppl are unaware) that with M.E patients, "exertion" can be physical/mental/ emotional stress and in some cases even things like noise, bright lights, strong smells and eating certain foods can be a form of stress or exertion because the body can no longer tolerate these things the way a 'normal' person can. Simple things like wearing perfume or hearing a dog bark can cause symptoms to worsen.

[AHummingbirdsGuide]

Well said Neelubird, and thank you for your comments!:)

BTW: Noise, and orthostaic stress as well as cognitive overexertion are the ones tbat cause me the most problems, the most severe relapses. I find them much harder to avoid than mere physical over-exertion.

I dream one day of being well enough to just SIT. Even an hour a day would be so nice...

Thanks again N:)