Letter to normals

[mmglobal]

A client of mine sent this to me today... Written for 'those without fibromyalgia and/or Myofascial Pain Syndrome. Could have been written by a spiney.
__________________________________________________ ______________

Letter to people that don't have FM and/or MPS:

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.

- 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 loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously 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/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 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 that, 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 the 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.

__________________________________________________ ______________

From http://www.merlinean.com/modules/tinyd4/index.php?id=3

This letter was modified (with permission) and published by Paula Payne in 1996 to become the "Letter to Normals". Since then it has been printed in various publications (with and without permission). Due to this fact, I would like to state that This "Letter to Normals" be used to help other people with FM/MPS as long as proper credit is given to Paula Payne and to Bek Oberin (Bek wrote the Open Letter To Those Without CFIDS.) for creating it.

[dshobbies]

It's amazing how we get so caught up in our own world that we think other's don't understand. In truth, others do have their own diseases or conditions, some worse, some not that fall into the broader catagory of fellow sufferers.

By the time we've reached middle age, most people's lives have been touched by a friend's or loved one's chronic condition but they are familiar only with that specific condtion. In their zeal to make us and themselves feel better, they suggest what we consider stupid ideas... like don't they think I would have tried that by myself or some other similar thought process on both sides.

As a member of the thoughtless comment group, more commonly known as the foot-in-mouth syndrome, who means well and no harm, I decided long ago that the intent of what is being said or suggested is far more important than the words for which I'm enormously grateful. I also learned long ago, though putting into practice is still more difficult, to just say thank you. Put away the suggestion for you'll never know when you might be able to use it, or even better, pass it on to some other unsuspecting soul.

It was the suggestion of friend's, one inparticular, that lead me both to the physical therapy that kept me off meds for years before my surgery and to my ultimate ADR. She's also suggested many other things that fall into the previous catagory but I love her for each one. She's trying to help and how I do appreciate her generosity. If she cares enough to try, that's good enough for me and I hope other's view my 'help' or 'kind words' in the same fashion.

My best to all, Dale

[Maria]

I get tired of hearing that I *look normal*. If I felt more normal I'd act it on a regular basis, not just after the max dose of pain med hits me, or when I take an extra partial or full dose to try to keep up w/a semi normal pace of others.

For the longest time I stopped doing nearly anything that other *normals* did. Over the last 6 months I've been hanging out with people that don't have significant spine or limb/other complaints and recently what I've heard from 2 persons (guys) is that I *complain alot*.

Excuse me... I don't mean to complain but I am saying what limits I have or should have and sometimes I am in pain and need to STOP or just avoid a certain activity, sit down, lay down or whatever~

One person is a good friend and I know he's just saying it because he listens to me and blows it off, the other person was actually saying this as a negative comment about my personality...

I try to be compassionate to others, listen to what is bothering them even if it's a social problem not a physical one~ and I rarely comment that one is *complaining too much*.. unless it's unduly so about something that is really not a big deal~

This letter hits the nail on the head tho and I wish the normals out could read it and get it tho I have to wonder will anyone get it until they have someone in their family close to them, or they themselves have to deal with chronic pain...

[mmglobal]

Ahhhhh, the insiteful Dale! Where I expect a bunch of piling on of "Oh yeah... I can relate to that!", Dale zeros in on the flip side. Man... I thought everything was black and white... but it's always grey!

What I've told people for years when they tell me about the thoughtless comment group is that they can't understand. There is no way that they can get it. You just have to find a polite way to brush off comments from the people that aren't important in your life. For the ones that are important, you may or may not be successful at getting them to understand enough. This letter very nicely expresses some of the things I should have been able to articulate to the important people in my life. I do believe that it has a tone that gives too much license to the patient to participate in activities and thought processes that enhance depression.

We sometimes need a 'thoughtless comment' friend to come and drag us out of the house. Sometimes it's great, sometimes it's not worth it. But I believe that we have to keep trying.

It'll be interesting to see where this discussion goes. The acceptance of disability and the layering on of substantial depression makes many of us much, much more disabled than just our spine problems would have us. For some, it's a small component of our disability, but for others, it's huge.

comments?

[Maria]

It took someone who has had a zest for life (call it what you will Mark) and suffered TBI (traumatic brain injury) 4 years ago who has brought himself back up to a more normal level of functioning tho there are some areas I think aren't *normal* by any means tho functional aspect, far more than me and seemingly normal~ ANYWAY, this person kind of pulled me up by my imaginary depends and gave me an incentive to get out the door and start doing things I would have never have thought about doing ~ and man, have I ever had fun!!!!

Getting out and doing things that Normals do has really been challenging at times and I think has built up my confidence and brought me out of a certain depressed status where all I did was think about my back and my pain.

Apparently not enough tho as it seems I mention it a bit too much... tho to me it's nothing like before.

I've a spring in my step much of the time when I've taken my max dose of pain med.. and I push myself much more than I used to ~

I hope I'm getting healthier~ I feel that I am. I walked 2 hours yesterday late afternoon w/a friend and our dogs. We went up stairs, walked and walked and not once sat down. When this walk was over I was DEAD...

Came home and had a wonderful sleep last night~ a seemingly normal day's activity and a normal sleep. It was blissful.

I think this article makes many good points~ and if it's overstated, perhaps it has to be to reach those who never experience anything remotely close to chronic pain but are willing to tell one how to remedy their situation, their pain and so forth~ and really believe only what they think/say only!

Still having been really badly off with my pain, and not well managed at all... I do feel that there is much said in this article that I would have wanted to say to various people exactly so~

[queenofhearts]

What about those in the "gray area" - not quite a chronic/spine patient anymore, but still not normal.....

personally I take the best of both worlds and try and make it work.

[annapurna]

Mark, thanks SO much for posting this. I'll bet EVERY spine or other chronic pain sufferer can relate to this. I'm particularly frustrated because I can't easily sit or drive for more than about an hour. I can walk, run, and climb mountains all day, but just don't ask me to sit! You can't believe the amount of criticism I get when I tell people that I simply cannot drive three or four hours to get somewhere. They always say, "well, if your back is so back, how can you do all that hiking?" I ask God to help me be understanding in these situations and not wish a killer case of spondy on them.

Thanks God for understanding friends like all of you!

Best,
Laura

[dshobbies]

To be honest, it wasn't so much comments that I found thoughtless, it was actions... and I found my friends much more willing to bring their own activity level down to mine than my family. I couldn't believe that I had raised such selfish children... but conversely also understand that they're just living their lives as best they can. Why shouldn't they want to go to a movie, and why shouldn't they include their father even if I couldn't go? This statement can be applied to so many other activities. When the day revolved around me, it did but when it didn't, I was left sitting alone. It hurt no matter how much I tried to understand.

Not so with my friends. They always tried to make sure I was comfortable and their concern was much greater than family's. But then again, when seeing them, movies and shopping, etc. weren't even on the table.

The bottom line is those who can, should - regardless of those who can't. The opposite would only result in martyrs and I don't want my friends or family in that catagory.

As for thoughtless comments, I have a friend who lived an adventurous life until grounded by her back. She complained that when in the company of those friends who shared this passion, they would only talk about their shared interests even though she could no longer participate.

I assume, through personal experience, that they actually thought she wanted to hear about the life she loved, never realizing that all the while, she was crying inside. However, with both friends and family, IF YOU DON'T TELL THEM HOW YOU FEEL, THEY CAN'T KNOW. If it hurt so much, all she had to do was tell them they she preferred not to discuss it. Theit attempts at comforting achieved just the opposite but having never walked in her shoes, of course they didn't understand... but true friends want to so it's up to us to educate them.

Should I asked my children not to include their father if I couldn't do something? Should I have denied my husband an enjoyable activity just because I couldn't join him? Though some with chronic disabilities might say yes and I'm sure there were times I did too, my disability invaded enough of my wonderful husband's life and I should/would be ashamed of myself for holding him back further, regardless of how much it hurt.

We are all so involved in our pain and how our lives were stolen by it that we failed to see how someone else might feel.

Now about my wonderful husband, read my other post!

Dale

[Maria]

Dale,
Long ago I hurt my back in 1982. I was 28 and an RN working full time with a great boyfriend and we loved to dance (South American) and party, have fun, go to movies and all the good stuff young people do.

So when my world came crashing down I didn't know how to handle the fact that his didn't. I wanted to hold him back in my heart but knew I couldn't do that. Still, this took some years to learn actually, and several relationships after that.

I finally learned to be content with the fact I couldn't do something yet I could feel OK letting someone else do it because why not, they could and why should they suffer my pain when it wasn't theirs?

I firmly believe in NOT making others suffer my pain, but that might mean not sticking around me either if I'm in a snit with my painful backside! I sometimes needed or need time to myself for recovery while I just lie down and not move~

[mmglobal]

Discussion about activity levels brings back some memories. I hung out, disabled and afraid to do ADR for more than 2 years before my surgery. I knew about ADR, Dr. Zeegers and the AlphaKlinik, but was afraid to take the leap. In 2002, we tried to take a very innocuous trip... driving up the coast to San Simeon. Driving did not bother me, but any type of sightseeing... the musuem stroll killed me. I had such a lousy time on the trip, that I wasn't going to go on another. Diane wanted to take a trip with our daughter and I encouraged her to go without me. It was another innocuous trip... up to Monterey and S.F.... very benign sightseeing.

That was absolutely the tipping point for me. Me being unable to participate in such a simple activity. I'd tried to participate and it wasn't worth it. Finally being completely sidelined and unable to participate really drove home the answers to the "am I bad enough" questions. It really brought me to understand that I was functioning at such a low level, that I really felt like my life was over.

When Diane spoke at my conference in NY, she talked about how important it was for her to let herself take care of herself. Just because we are in jail, we should not expect our families to be in jail with us. (So Dale... don't let Julius' disc herniations hold you down.... Leave him home... let's go dancing! Actually, I can't dance since my surgery, but since I couldn't dance before my spine problems, I'm not sure if it's related or not.)

Mark

[marijo]

I have just spent ages writing a really emotive post, and then lost it.....I am so p....d off I can hardly speak write or think.
M.x

[Maria]

That's a really frustrating feeling to lose a long post ~ hopefully you'll be able to post again soon! Take care and hope you didn't have to sit too long while you were writing~ looking forward to whenever you'll be replying again! Maria

[dshobbies]

Marijo,

Been there, done that! I just posted a question to Mark asking if something could be done about the mysterious key that makes these unposted replies vanish. He said no...suggesting hitting the back key or control z.

Though I do someetimes get caught up in the moment, I've learned that when knowing the post will be long to write it in word, then cut, paste and post.

Please don't give up, we want to hear what you have to say (or at least read it). Better luck next time,

Dale