A Conversation for What is it about ME (Myalgic Encephalomyelitis)?

Great!

Post 1

Inanna has a theory - it could be bunnies.

Nice work, LHG ... you seem to have covered just about everything in terms of basic info.

Treatments - I've been incredibly helped by a combination of acupuncture, and thai yoga massage (fully clothed, you get gently stretched and pulled into various yoga positions, and lots of acupressure point work). I should also be taking lots of vitamins/CoEQ/ginko/ginseng etc but I've sort of stopped that coz a) it's expensive and b) I hate swallowing tablets!

Perhaps something on the attitudes of other people.. the 'yuppie flu' origins, the "it's all in your head".. "it's depression" .. "just try harder and push yourself to do more" .. and (I had this one from an acquaintance) "well, you're middle class, I don't know any working class people who get ill with something like this."

Anyway, I'd love to hear what sort of stuff helps you.

I'm having an achey day today...... *sigh*


Great!

Post 2

Lighthousegirl - back on board

Thank you Inanna

I am sorry to hear you are having an achey day smiley - hug

The idea of adding something about the attitudes to it is excellent - its one of the hardest things for the sufferer and those close to them to deal with.

I am lucky enough to me OK most of the time now, work full time and relatively active socially - provided I am really really careful! But that brick wall of sheer fatigue is never very far away.

There are a number of things that I rely on totally to get me through. Food allergies and removing the allergens from my diet has been a huge one for me. As has leatning to manage my energy levels. I use aroma therapy a lot, vitamin supplements (when I can). I started a yaga class a little while ago and have found that to be really helpful too.

I will write more when I can

Hope you get some good quality rest

Thanks again for the encouragement


Great!

Post 3

span(ner in the works) - check out The Forum A1146917 for some ace debate

i have had ME for 2 - 3 years and have been lucky that i don't have the financial pressures that so many do - i have been able to just totally take time off and am now recovering to a point where i can do things again, i hope to return to work next year

i was very much a type A personality before i got sick - i have heard of other young people (i am 24) who have had it and have totally recovered in 3 years, so i am hoping to be like them, but i don't think i will ever return to the workaholic way i used to treat my body before, at least i hope not!

what has worked for me has been:
- a sympathetic and supportive doctor, family and friends - one of my friends before i got sick was a med student who is now a doctor - he was very disparaging about the whole thing and as a result we are not really friends anymore, which is sad, but it was necessary, every time he saw me he would reassess what HE thought was REALLY wrong with me, in light of whatever he was studying/treating at the time - my bf has been amazing, we got together about the same time i got sick, and he really has helped enormously, kept me from being totally isolated and alone - although he is mad at me right now because it's nearly 1am and i am up (due to insomnia)!

- chiropractic treatment - i got to a chiropractor who also does applied kinesiology and homeopathics and is trained in a whole lot of other disciplines - she is great and has made a big difference - initially i had to see her twice a week, now i am down to once a month smiley - smiley

- anti-depressants - depression has been one of the biggest problems i have faced with ME, although i believe it may have been a problem before i got sick - anti-depressants (yes prozac!) have had a big impact, not on my personality, but on my ability to have this illness and still be me! it doesn't get me down so much

- marathecat - having a pet around, when i am sick and at home alone, has been fab too smiley - smiley

- being able to rest and just do what i want to do - i have been lucky to be fine financially, and i know that most people can't do this - i have a friend who has a similar illness (FM) and has to rely on a benefit and it is just so much extra stress - i have taken being sick as an opportunity to read all those books i always wanted to, and do a lot of things i kept putting off because i never had enough time

that's all i can think of right now, i should go to bed!
span


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