SO I wrote this to most of the contacts in my address book:
Prescript: I don't expect you to read this all in one go, but please send it to everyone you know.
Hello Family and Friends!
Today is FMS awareness day and I wanted to take a little time to create a message to spread around, with informative media to educate and bring this silent illness out into the open. Research is happening, and new stuff about this illness is always being uncovered - I have great faith that one day a cure or at least an effective management of the disease for all sufferers will be found.
However, people still think this is an "all in the head" illness suffered by lazy folks, hypochondriacs, or just plain exaggeration... which is an extreme insult to anyone who suffers (24 hours, 365 days a year, for all their life) the pain and many symptoms associated with the disease. Awareness is the key to more research, understanding, tolerance, and most importantly - we won't be wrongly ashamed to tell people about our disease, dreading the usual judgemental responses.
I thought instead of sending just text site links, I'd give you some video links this time - videos tend to hold the attention span more easily than text, don't you think?
Fibromyalgia Video - a brief YouTube documentary on the illness.
Symptom Video - Covers the most widely experienced symptoms.
The P.A.N.D.O.R.A. International Video Advocacy contest winner (click here), very well done.
A great and brief CDC&P public service announcement video.
A personal account of FMS - blurry but the personal, emotional, and personal perspective aspect really come through. Here's another personal account - very detailed, but you'll have to turn up your speakers, it's quiet. I love how real this is, you can really taste the fatigue - physical, mental, and spiritual. Here is a real look at a pain attack, which a high percentage of FMS sufferers have experienced first hand. Also the aforementioned video shows the caretaker of this British FMS patient.
And last, but certainly not least, this wonderful Fibromyalgia Awareness video, that really shows how ignored this illness is, despite its severity. I especially like how the creator of this video pointed out that heroine addiction treatment facilities get much better funding than FMS/ME clinics.
If you need more info, here are some Websites:
http://www.fibromyalgiasupport.com/ - this site is wonderful. News, resources, medical abstracts, tons of articles..
http://en.wikipedia.org/wiki/Fibromyalgia Wikipedia's article on FMS, along with a great list of links.
http://fm-cfs.ca/ FMS/CFS Canada: Compassion in Action.
Some Essential tips:
- Don't touch us, hug us, handshake us - wait for us to show you how, and tell you if we can that day. Most days a hug can feel as painful as a beating.
- Give us time to reply your phone calls, emails, letters. Sometimes the pain and symptoms consume our lives.. it's not personal to you.
- Once in a while, let us vent, and try not to openly judge. Don't offer obvious solutions, because I can assure you that most of us have read tens of books (and hundreds of articles) on this subject, we are FMS experts. If you find a news article on FMS, then usually we're more than open - news can be hard to find and contain golden nuggets of info.
- Help us. For the most of us, we can't do very much. Many are on disability for the simple fact that we can't even do seemingly simple tasks like cooking, cleaning, errands, etc. Once in a while it's a boon to get even the smallest helping hand.
- Don't judge, don't taunt, don't insult us about our disease. (Or anything for that matter.. lol.. we have enough to deal with)
- Don't comment on the number of pills we take. We know it's too much, we know we'll probably have liver and kidney damage later on. We've weighed the costs/benefits, and so have our cooperative team of very educated doctors. Don't think we're taking painkillers for the kicks, don't think we're taking sleeping pills and antidepressants for nothing. Pills are a constant battle for us, and we don't need more hassle.
- Don't expect too much from us. Don't burden us with responsibility if possible. We'll cancel often on you, we'll let you down, we'll get sick at the last minute, and we'll have to leave early from most functions we do attend. It's the nature of the illness, and I know how hard it is for family and friends to deal with, but it's as sure as the changing weather in Canada that we'll get sick at a moment's notice. It's not personal, it's essential to our health.
- Don't assume we're okay if we look okay. We're experts at hiding our illness, after years of practice. Many of us hate pity or negative judgement, and have learned to just keep it to ourselves as much as possible.
- Don't correct us when we make communication mistakes (writing, speaking) - as it's a product of brain fog. We know we don't make sense sometimes. We don't even make sense to ourselves most of the time, it's like being drunk most the time, without the feel-good feelings. ;)
- Don't be surprised at our forgetfulness, and try not to get mad if we forget something important. Sometimes we forget how to spell even the simplest words, remember the most important dates, or even forget what we were just doing or talking, or writing about.
I could give you a hundred more tips, but I'm on the verge of collapse after writing this. Even the simplest tasks like writing a letter can drain us like a marathon run.. draining us for hours or days at a time. More difficult tasks can drain us for weeks or months. Stress can drain us, flare us up to get worse, or permanently get worse.
If you have a hard time understanding how fibromyalgics feel physically, think of them with the worst flu you've ever had, with burns and/or bruises on your entire body, and you've just run 10 miles after not sleeping for a few days. You feel like you're 80 when you're 30. And you'll have to go through that every day, probably for the rest of your life.
But I'm convinced there's a cure out there, and all FMS patients can be cured. We can do it. We can get through this. Never give up, because one day we could be okay! Spread the awareness when you can.. awareness is the goal.
Thank you for reading this and thank you very much if you pass it on.
And I got HATE MAIL back from three of the 50 people.
Why? They assumed I was pointing fingers and calling them a bad people. It was FMS Awareness Day, and I like to educate. I'm treated really well by everyone around me.. well except those three people who need to deal with their anger. Poor people, I wish no one would be stressed in this world and we could just romp around in meadows and amusement parks and sail boats and... well you get the picture. I wish people didn't get angry and consequently hurt themselves more than they hurt their target. - If people get mad at you for no good reason, they must have a lot of suffering to deal with. That doesn't mean you have to "Save" them, however.. people need to learn to help themselves. It's debilitating having people pity and coddle you, it regresses you into childhood and makes you expect and assume. Ask not what your loved ones can do for you, ask what you can do for them ;)
I must admit that my parents surely take such good care of me that I feel completely spoiled. I try to give back all I can in return, but it's never enough. Parents do so much! They go through hell and back for their kids. Well some parents.
I should never and will never be a parent, I'm too crazy. My kids would be paranoid eccentrics who know how to speak Klingon. Kaplah! (sp)
Back to the topic. I can also understand how some people that view my illness as fake might think the email was ridiculous. I feel sorry for them too.
This has been a great May 12.. next year I hope to have more goodness. Yesterday I was upset for so many reasons, but writing that rant made me feel so much better. I am starting to come out of my super antisocial period.. and even though I have less friends after today, I have more confidence in the friends I do have.