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What getting Myalgic Encephalomyelitis feels like (to me)

Some brief comments on what it feels like to get M.E. This video also highlights the importance of avoiding overexertion if you have M.E. For more information on all aspects of M.E., and for tran...  
 
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gasjam (8 months ago) Show Hide
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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 (9 months ago) Show Hide
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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 (10 months ago) Show Hide
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Thanks for yet another helpful, informative video.
CRAIG11235813 (10 months ago) Show Hide
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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.
neelubird (11 months ago) Show Hide
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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 (10 months ago) Show Hide
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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:)
justter (11 months ago) Show Hide
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Wonderfully informative! I still have hope that one day there will be a successful treatment for us all. If we don't have hope we really have lost everything. Thank you so much for making this video. I hope that our efforts will at least raise public awareness and change the stigma attached to having such an illness. Excellent video!!
AHummingbirdsGuide (10 months ago) Show Hide
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Thanks J!:)

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