The ancient yogis have known for Millennia that there is an intimate connection between the breath and life itself. The breath is your first physical act upon entering life and it will be your last upon leaving.

The breath is the one system of your body that is both autonomic (meaning that it continues without conscious control) and controllable. If you can learn how to control your breath, you can learn to control, or at least influence, how you feel both emotionally and physically.

Through deeper and smoother breathing, you will be able to slow down your heartbeat, reduce the flow of adrenaline and increase the production of endorphins, which are your body's own natural tranquilizer. Deeper and smoother breathing helps to clear your head and relaxes your body. Thus, you will expend less effort in whatever you do.

The controlled breath is the gateway to the nervous system. It will lead you to enhanced feelings of personal control and, to whatever extent possible, physical recovery. The process of controlling your body and mind begins by learning how to control your breath and the physio- psychological processes it affects.

— Sam Dworkis in Recovery Yoga, page 17.

...Remind yourself of what is important in any particular situation: is it more important to get dinner on the stove right this minute or to reduce your pain level now? You know that in all cases, your health and comfort are more important. Stop and do a few loosening movements and get dinner on the stove three or four minutes later. When you stop working and address your pain right when it's happening, not only do you ease it then, but you are breaking the habit of pain itself. You are interrupting your usual mind-set of assuming that getting dinner ready will be accompanied by pain. Stop putting up with pain! Start demanding of yourself that you put your own comfort level and healing potential ahead of the efficient completion of mundane tasks. Whenever it hurts, stop and take the opportunity to teach yourself how to move without hurting. You are investing in a pain-free future.

— Darlene Cohen in Finding a Joyful Life in the Heart of Pain, page 146.

This letter is based on an open letter created by Bek Oberin as the "Open Letter To Those Without CFIDS." It was modified for FMS/MPS by Paula Payne in 1996. You might find that this letter — or something like it — could be useful in helping your friends and family to understand how your chronic illness or disability affects your life.

Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS/MPS and its effects, and of those that think they know, many are actually misinformed.

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 in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with — 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. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. 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 to do so.
  
  
• Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. 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," "walking," "thinking," "being sociable," and so on ... It applies to everything. That's what FMS/MPS does to you.
  
  
• Please understand that FMS/MPS is 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, then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If this happens, please do not take it personally.
  
  
• Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct.... If I were capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist, and I am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder...." FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good — and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?), but it is not created by depression.
  
  
• Please understand that if I say I have to sit down or lie down or 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 out for the day (or whatever). FMS/MPS does not forgive.
  
  
• If you want to suggest a cure to me, 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 FMS/MPS 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 FMS/MPS. If something worked we would know.
  
  
• If after reading this, you still want to suggest a cure, then do it. But don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
  
  

In many ways I depend on you — people who are not sick — I need you to visit me when I am too sick to go out.... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level, too .... You're my link to the outside world.... If you don't come to visit me then I might not get to see you.

... and, as much as it's possible, I need you to understand me.

[Source: Living with FMS (Fibromyalgia Syndrome) If you have any comments or suggestions, please email: fms@tidalweb.com.]

One of the wonderful things about support groups is that there's so much you can learn from your chronically ill peers. For example, I was having a terrible time after I'd take a shower. I'd immediately go into a serious "sweat-attack," and by the time I got done sweating, I'd be sopping wet and ready for another shower!

I found the solution at a meeting of the North East chapter of the Mastocytosis Society. I don't have masto, but my illness has many similar features. I mentioned my problem with showers, and immediately someone said, "Are those hot showers? You can't take hot showers without getting set off. Try a warm shower, and see how that works."

Well, whaddyaknow, if I take a warm shower instead of a nice hot one, I don't go into a major sweat-attack afterwards. It may seem obvious or simple to you, but I had never thought about the temperature of the shower or that a few degrees change could make such a difference.

—clv