View Full Version : M.E - Myalgic Encephalopathy.


sarey
02-03-10, 03:20 AM
I am currently under investigation in having the condition M.E.

I was diagnosed last year, but it needs to be confirmed.

I am moderately-severely affected.

I just posted this on a group on Facebook called:

"If M.E isn't a real illness, why did I give my life up?"


"I just love being in pain, exhausted, fatigued, I love the muscle weakness, the headaches, the eye pains, the sore throats, the swollen painful glands, the breathing problems, the shakiness, the unstable balance, the appetite loss, the nausea, the constipation, the brain fog, the heart problems, the confusion, the anger, the upset, the fact my life has drastically changed & has ruined so many things since developing this apparent non existence medical illness.

Oh, & I just love being misunderstood, oh & don't forget the the no sympathy from others, but instead, the ignorance, the abuse, & the neglect.

Yes, of course this isn't real.
It's all in my head.
It's fake.
It's attention seeking.
It's laziness.
It's psychological.

Of course it is.

=l "


I think a lot of the posts on that place give a strong view of what it is like, & even then, you cannot understand what it is like for someone who has M.E, especially those who have it severely.

I really hope one day, & soon, people will not think such things about this dreadful illness.
It will be accepted as just that, an illness.
A very debilitating, life changing, and even life threatening, illness.

It is so damaging for someone who has M.E to be told those things, it can in fact, cause severe depression, anxiety, etc.

It can even lead to that person killing themselves...

It is so cruel to say such things to anyone... let alone someone who is suffering.

You would not say this to someone who has cancer, or leukemia, so why in the heck would you say this to someone who has M.E?

It is a real illness.

It is very real, and the sufferer has to put up & deal with so much crap because of this illness.

It can be so severe that you need to go into hospital, have a feeding tube placed into you, a drip, a breathing mask, etc, because it can be that serious.

Some have to use wheelchairs because they cannot handle walking.

Some are completely bed bound.

Some for weeks... months... even years on end will be house/bed bound.

I've met a lot of people who have to deal with the crap they get from others.

It's disgusting how cruel others can be.

Anyway, I just thought I'd post this.

sloppitty-sue
02-06-10, 03:28 PM
AMEN!

My heart goes out to you! I have NOT been dx with CFS or ME or any of those other dx that are often found under the same umbrella. I have been too tired and overwhelmed to pursuit all of the appts and tests needed to make such a dx. And for now, I am lucky to have qualified for SSI without it (apparently under the dx of Major Depressive disorder, I believe). However - I am still convinced that I am "depressed" because I am so tired all the time and not vice versa.

I don't "do anything" and haven't "done anything" for the past five years because it's too exhausting. My therapist seems to think it's because I'm too afraid of rejection or some such nonsense (She's even suggested that I might have Avoidant P.D.) But I disagree and tell her so. Whenever I do just ONE thing (like go to my therapy appt OR go grocery shopping) 97% of the time I am totally pooped out from it and NEED a several hour nap afterwards. In fact, I seem to need a nap EVERY afternoon or else I get run down and sick with a cold or bug of some kind. It's ridiculous - and hard for anyone to take seriously.

My 63-year-old mother who DID suffer from a SEVERE & completely disabling mental illness from about the age of 50 - 60 (severe paranoid psychosis/nos) was hospitalized (and miraculously NOT released after 2-3 days like she usually was because she was always there against her will and could not legally be forced to stay for treatment) and treated for several weeks and HELPED by it to the extent that she was no longer homeless and was hooked up with SSDI and dept of mental health and her own apartment. Although she must continue on antipsychotic medication (which makes most people drowsy), SHE works 3 days per week in retail, works out at the gym, goes to Weight Watchers, travels 60 miles on her days off to help my sister with her pet sitting business, is active in her church and just constantly on the go! And - of course - SHE can't understand why I am so lazy. (And I can't understand why she is so "busy" - or is it a touch of mania? - which also runs in the family - EXCEPT for with me, of course . . . mania always sounds good to me, as sick as that might be . . . )

Anyway - I'm wishing you all the best! And at least an understanding group of friends to confide in.

Sincerely,
Sue

sarey
02-06-10, 04:54 PM
Sue, I am really sorry you have received the ignorance of others, it is truly damaging and it can have an awful effect on us.

I really hope you can get some sort of help in regards to your health problems (that look really bad right now!!! =[ ), I think it'd help a lot if you were to be supported and perhaps offered any treatment for your awfully life restricting problems.

I wish you well, and know I'm here for you anytime.

firstdesserts
02-07-10, 02:27 AM
Interesting post. I just happened to wander by and see it.