Before going on her current treatment, my daughter described her life as "being zipped up in a body bag". She sent me this wonderful, heart-wrenching, heartbreaking post yesterday that every MS doc and researcher should be FORCED to read every day (my apologies for the length!):
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 it's effects on us; and many of those who think they do know 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 does not mean I'm no longer 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 for a week or two, 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 still 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 are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.
Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With MS it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain. We have good days and bad, and during our good days we may truly not "look sick", but we are.
Please understand that making plans other than immediate ones is a crap shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what MS does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!
Please understand that MS is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.
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, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don't you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.
Another statement that hurts: "You just need to push yourself more..." Obviously, MS directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. MS
causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired.
When I say I can't do something because I am so fatigued, please don't say "Oh I know what you mean! I am worn out too, but..." because you don't. MS fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have MS or other fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or my MS at all. I may well be just plain tired - we get normally tired during remission phases just as any normal person does - but trust me: we know the difference, and it's huge.
When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can't walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don't baby me, don't hover over me, don't do things for me unless I ask - we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn't question a known diabetics request for orange juice or insulin, so please don't question us or urge us to 'keep on... we are almost there!' Not unless you are prepared to a) carry us the rest of the way or b) call 911. MS does not wait, nor does it forgive... when we say "please ... now!" it means now.
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 family and friends suggest something 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 markedly helped, all forms of MS the world would know about it. If you still insist on promoting 'cures' to me or giving me 'this will make you better' advice, do so; but understand I won't rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.
In many ways I depend on you... people who are not sick... I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels... as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it's possible...
I need you to understand me.
My daughter also "flattered" me with the following when she sent it to me:
You are the ONLY person that understood that this is how I felt for soooooooooo long! Thanks for your understanding and help through such an awful awful time!!!
I love you!!