Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Haven't been able to be active on DS for a while but I just wanted to inform people about my COMPLAINT filed to the ONTARIO COLLEGE OF PHYSICIANS, IN CANADA. To summarize, it was long and painstaking, took half of 2014. Today I OPENED THE FINAL RESPONSE FROM THEM. There were several issues, but I have to say I am proud of what I did and the articulate arguments I put forward that A DOCTOR TRAINING MEDICAL CENTRE, in Mississauga, near Toronto, was inadequate in diagnosing and treating Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. It was extremely stressful to write the many letters back and forth, and of course I had worse relapses right after each letter. THEIR FINAL DECISION : They found the Medical Centre NOT LACKING IN ANY EXPERTISE TO DIAGNOSE AND TREAT CFS.
There you have it! NOW FOR SOME HUMOUR.
SHOUT goes out to Maris, who encouraged me in my humour writing. Too tired to go to my file, so instead of saying"I got nothing!!" Off the top of my head: "There's a certain freedom in knowing THAT YOUR BODY IS SCREWED!! Couple that with the middle age (I don't care what people think anymore) and I've ended up with A DANGEROUS CONCOCTION OF ULTIMATELY BIZARRE BEHAVIOUR. I usually carry this out when anxiety hits it out of the park at 9 or 10 pm. As far as I'm concerned, these God given stress releases MUST be carried out in public, FOR MAXIMUM effect. Unfortunately I live in a neighbourhood of upper class white people (just saying!) and they have found my evenings rampages rather disturbing. I think my favourite evening escape event was in December of 2014, on a windy, cold night when rain was slashing down sideways.
Donning my attractive raincoat and hat I jumped into my power wheelchair and bumped along the sidewalks at top speed singing "My Heart Will Go On and On" by Celine Dion.
(now that I think about it, I think I changed it to "My Body Will Go On and On". Rather appropriate, don't you think AND CANADIAN TOO!)
There you have it! NOW FOR SOME HUMOUR.
SHOUT goes out to Maris, who encouraged me in my humour writing. Too tired to go to my file, so instead of saying"I got nothing!!" Off the top of my head: "There's a certain freedom in knowing THAT YOUR BODY IS SCREWED!! Couple that with the middle age (I don't care what people think anymore) and I've ended up with A DANGEROUS CONCOCTION OF ULTIMATELY BIZARRE BEHAVIOUR. I usually carry this out when anxiety hits it out of the park at 9 or 10 pm. As far as I'm concerned, these God given stress releases MUST be carried out in public, FOR MAXIMUM effect. Unfortunately I live in a neighbourhood of upper class white people (just saying!) and they have found my evenings rampages rather disturbing. I think my favourite evening escape event was in December of 2014, on a windy, cold night when rain was slashing down sideways.
Donning my attractive raincoat and hat I jumped into my power wheelchair and bumped along the sidewalks at top speed singing "My Heart Will Go On and On" by Celine Dion.
(now that I think about it, I think I changed it to "My Body Will Go On and On". Rather appropriate, don't you think AND CANADIAN TOO!)
(I don't know much about healthcare other then it has been a year and they still tell me nothing.)
I'm sorry to hear that the result was so disappointing ~ though we know that the medical profession doesn't like to criticize itself (no organization does). Thanks for expressing your frustration with the humour writing ~ you're very clever and funny! We all need to laugh especially when times are hard or to help us face disappointment so here's a joke for you that made me laugh ~
Concerned about the health of her aunt, a woman called her doctor. After consulting his case notes, the doctor said: "There's no need for you to bring you aunt in because she really isn't ill at all ~ she just thinks she's sick."
A week later the doctor phoned the house to check that his diagnosis was correct. "And how's your aunt today?" he asked.
"Worse," said the woman."Now she thinks she's dead!"
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So the doctors may say that we're imagining that we're as sick as we are, but at least let's not imagine that we're dead! We need to keep getting up and doing our best to smile every day ~ at least for a little while. Thanks for brightening my day and giving me a place to share this joke ~ at least I thought it was funny :-)
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If you're in the mood for humor, here's a product warning I found online for those fortunate enough to own I-Phones..."Do not ever boil your IPhone in Coca-Cola."
Wow, I could see where that could be hazardous.
Just to help you keep you're humour up ~ here's another joke for you. Hope you get a smile out of it :-)
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A man took his talking dog to a showbiz agent. The dog proceeded to tell 10 jokes in a wide variety of accents including American, French and Irish.
When the dog had finished his repetoire, his owner said excitedly: "What do you think? We're going to make a fortune, right?"
The agent said: " Well, his delivery's all right but his material's a bit weak."
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Guess the dog needed you to write some humour material for him! Hang in there ~ Huelani
Anyway, I also want to say that you should be very proud of yourself to have taken on the medical establishment as you did. I cannot imagine the energy it took to write and respond , write and respond when they were being such A....holes in return. KInda like banging your head against a wall... Not a whole lot of joy, or healing, in that! I am hoping that you have changed medical facilities and are getting a higher grade of care now. You surely deserve it....and we here at DS want to know that you are being cared for. WE want yo to be well so that we can continue to look forward to more of your zany and irreverent and wacky writing. WE need you! You are our entertainment. You know. I wrote this entire response to you last evening then the site went down and my message failed, so if you should receive two similar letters, just pick and choose the parts you like from each and toss the rest.... Oh I was going to say, as I did in the note that got disappeared last night, if you read DAvid Sedaris or John Irving - they both write about emotional, trying , existentially difficult situations that are often gravely hard to sit with, but they write about these things with humor and it gives us a way into a world we may have wanted to avoid. They are both great! Anything by DAvid Sedaris is top notch, I think and Joh Irvings The World According to GArp and A Prayer for Owen Meany are my two favs.So anyway, congrats on your approach at the CAnadian medical corporation and on our writing about your emotional fallout from it. You are a strong chickadee, I can tell. Don't ever give up. AS hard as it is, there will be good times, so don't ever throw in the towel. WE are all here for you. Big HUgs,
Dnise PS Am wondeing if you called STanford, the Cleveland Clinic, Mayo Clinic and some of the other renowned institutions if they could give you some referrals for your area that might be of better service to you. Just a thought Hugs!
And then therevwas the waitress who'd worked a whole lifetime around Boston or somewhere up there in the NorthEast. Her tombstone read, " See, I told you I was sick."
We MUST keep our sense of humor, otherwise we're sunk. Winter is hard anyway, come Spring, sunnier days, everything bursting into bloom, it will get better.
I just told my son a few hours ago, I want the rest of my life to have meaning, no matter how difficult it may be. I would love it if we had a central place we could all get together periodically and just brainstorm, or write, or create art, or just help eachother feel better. Why don't we have that? It just makes sense.
Hang in there. I just know we've all got better days coming.
WE need you humor and you ned our brilliant feedback!!! I think you should do a collection of stories about living wi CFIDS or a memoir or something ! Don't let your talents just go to bed with you. Fluff those sheets, get cup of tea and start story telling.....
WE ARE WAITING!!
But I am really struggling with the social aspect of all this. That's just MY ball of wax, n I'll get it figured out soon. ( of course I've had a stroke on top of the Cfids/Fibro.
Pouty, there is a Fibro specialist here that I went to who might be able to help, at least validate what you're going through and guide you to someone in your area who can help.
He is Dr. Broadwell, sorry can't recall if it is Aaron or Larry K, but they are both at 820 Jordan St in Shreveport LA. USA, phone # 318-221-0399. I found him to be very knowledgable about ME/CFIDS and Fibro.
I sure do hope this info helps you. Know this is not in your area, but if you need to come here there are McDonald Houses available, and beyond that, it's possible I could help you with a place to stay. With some notice of course.
There's just no reason for us to have to suffer and struggle unneccessarily and I firmly believe we must help eachother where we can.
Thanks for sharing your experiences, and for being your wonderful rebellious self! Thank God for us rebels!!!
My 38 yr old daughter told me this evening she wants me n my husband to move up there(over 4 hrs away) next door tocthem so she can take care of us!
Okay, it's so sweet that she feels that way, but so funny on so many levels.... First off, this is the same grown child who poured a boiling hot bowl of soup all over my chest n belly when I was just released from hospital after a hysterectomy. "Oh, Mama! I thought you had it!!!"
Second, as I reminded her, when HER daughter was a baby, we were all out on my front porch and the subject came up about her taking care of us in our old age. "OH, NO" Was her reply: "Y'all are going in a HOME!!!!"
Her reply this evening: Mama, I was young and stupid. ( I swear, I couldn't make this stuff up!!!) And I will never put you in a home, or Daddy either.
I guess I'm just so bad.... I was laughing my butt off, and couldn't help asking, "Okay if you were young and stupid then, WHAT are you NOW??? Old and Wise???"
I told my Mother about it, she's 87, and we laughed and laughed til our faces and bellies hurt.
Bless Valerie's heart, it WAS sweet of her, AND her fiancee, and I'm just mean to make fun... But I did need a laugh. Had just found out the day before my houseboat is sinking. It's always something isn't it.