A Letter to "Normals"

Having MS 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 MS 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, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to.

Please understand that being able to stand for ten minutes doesn't necessarily mean that I can stand up for twenty minutes ,or an hour, and just because I manage 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 MS does to you.


-Please understand that MS is variable. It's quite possible (for me, its 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, it 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 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 MS 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, MS 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 cant be put off of forgotten just because I'm out for the day (or whatever). MS 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 MS 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 MS, 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 to help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you.
...and, as much as it's possible, I need you to understand me.

Re: Death Seems Better

A letter was written about the hardships of life being coiled upon a young woman, the fire of the devil burning her while the MonSter raged at her back the enter time. She sot solace in the MSuport group, and this was a beautifully written response I had to share:





I'm so very sorry to hear that all of this crap is coming down on you at once. I know it is a very difficult time, but I want you to know something:






MS Patients are without a doubt the STRONGEST people you will ever come across. They have to deal with so much, the light and extremes of things, more than others are exposed to. MS has no pre-determined course to the disease, like cancer, aids, etc... MS will not kill you. It does not end your life. What it does do is offer us
the "unexpected" on a daily basis, it's like the suspenseful part of a movie that we don't want to watch, but have to.

What we have to do, is to not lose everything about ourselves, but to modify/change who we are. We don't have to stop doing the things we love to do, but we do have to learn how to do them in a new/different way that is compatible with the limitations set forth by our condition. It doesn't "end" things all together, we just have to
learn how to modify our daily lives to accommodate MS.

MS wants to get us down and keep us down. But even if, for example, we are used to running 5 miles a day, and have to reduce it down to 1 mile a day, We still win, because we are still not down. We are not letting MS win by modifying what we do. Just changing "how" you do things will allow you to keep doing things that you love to do. MS might make some things more difficult, but that's just making you smarter and stronger.

I understand these thoughts you are having. I had them too during my first year after being diagnosed, but then I learned that our lives don't end because of MS, just making changes to accommodate will allow us to still persevere and beat the attempts by this disease to "keep" us down.

YOU CAN DO THIS, YOU CAN MAKE IT THROUGH THIS. WE ARE HERE FOR YOU, HERE TO HELP YOU THROUGH THIS. WE ARE HERE TO LISTEN TO YOU, SHARE WITH YOU, BE YOUR FRIEND AND YOUR NEW EXTENDED FAMILY. IF YOU EVER FEEL ALONE IN THE WORLD BECAUSE OF MS, OR FEEL THAT THINGS ARE JUST TOO MUCH, PLEASE REMEMBER US, AND THAT WE ARE ALL HERE, WAITING TO
SHARE, SUPPORT, LISTEN AND HELP EACH OTHER THROUGH THIS.

Now please do me a favor and read the following web page, and remember that when the day is over, We are still here for you.

http://www.metanoia .org/suicide/

http://www.metanoia .org/suicide/ spagebw.htm

You can make it through this. We need you.

Take care and God Bless.