I found this written by a woman name Ricky Buchanan. I’ve discovered by creeping around the CFS and Fibromyalgia boards online that my day to day lived reality is like theirs. I am agnostic about giving myself such a label but I gain much support and don’t feel as alone when I interact with people who are as physically limited as I am.
I’m pretty ignorant about exactly what the CFS community thinks about their own plight. I imagine and have seen that there seems to be lots of different ideas out there. I personally know that detox from psych meds brought me here and don’t know whether or not I have other confounding factors that complicate why I’m so crippled or not. Certainly a lot of people coming off psych meds, in particular, benzos, suffer like I’m suffering. Though for me it clearly started with the Lamictal. The other drugs I came off of did not seem to physically impair me and there were 4 others.
So as not to freak everyone out—-remember most people who withdraw from psych meds do not end up where I have—however it’s not entirely unusual either depending on the drug and the length of time and the dosages one was on. Next year there will be a book available that investigates the phenomena I’ve fallen victim too and so that particular journalist found lots of us.
This open letter written by Ricky had me sobbing—I had never heard of anyone else who really got what I go through. And it was her letter that got me seeking out others impaired as I am.
I got permission to reprint it here.
The Open Letter To Those Without CFS/Fibro …(etc.)
Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. CFS may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. CFS does not forgive.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. He’s open to new suggestions and is a great guy, and he takes what I say seriously.
Please understand that getting better from an illness like this can be very slow. People with CFS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you – people who are not sick – for many things.
But most importantly, I need you to understand me.
hi Dear Shelby…
you know I ruled out MS with an MRI…but my current alternative doc thinks diagnosis like CFS and MS don’t mean anything…they are waste basket terms for “we don’t really know what the fuck is wrong with you.”
I personally believe much of these strange diseases ARE environmental toxins and in our cases PHARMACEUTICAL damage…
yeah, MS too…and CFS…that’s why I don’t use the label though I fit the criteria…
anyway…blessings to you…I know you have a hard time too.
Just found the website I wanted.
“The Spoon Theory”
Description of living with Lupus. How you must gauge your energy for each day.
Glad you’re doing so well and reaching your goal.
I was diagnosed with Fibromyalgia and Chronic Fatigue for 6 years. A lot of doctors/people think it totally 100% psychological.
The fatigue can come on so quickly that I start to fall asleep while driving/standing-that fast. And yes-when I’ve “hit the wall” I must right then go home, leave the store or lay down. There is no more energy-it’s all gone. I get maybe 5-6 miles to my gallon of energy while you may get 25. Some days zero energy.
I can totally relate to what Ricky says. At local meetings I saw folks dragging themselves in the room just to talk. So few understand. Such courageous people.
By accident I went to a superb neurologist and he said it’s wasn’t Fibro/CFS. It turned out to be progressive MS.
The symptoms were so similar only an very observant expert could tell.
Fibro/CFS can be affect anyone like MS and other nerve/muscle damaging illnesses.
I wear my smile-it’s part of me.
I know tomorrow may be better.
I’ve used so much energy trying to make others understand what I have whether it was Fibro or MS. You either get it or you don’t.
hello gianna – taking your advice and popping my head out – just saying hello.
Wow – that’s rough. I’m sorry for anyone with this disease and it looks really complicated. God bless all of you…
Ricky wrote so eloquently about her situation, the limitations and frustrations.
There was so much that appeared to describe the experiences you have shared with us during your journey. I can understand your tears.
The similarities between you and this person are astounding!