You’ve been diagnosed with multiple sclerosis. Things are going to change. Your mind is most likely whirling with information. You hear what the neurologist is telling you, but actually taking it in seems unlikely. It’s too much. I get that. Anyone else who’s been diagnosed with MS will also get it. You are not alone.
Still, you are full of questions. You learn that MS has over 200 symptoms, the most common being tingling and numbness, vision problems, weakness, fatigue, bladder issues, dizziness and cognitive dysfunction. They aren’t what you wonder the most about, though. What you really want to know is how MS is going to make you feel; other than exhausted and sick.
Recently I was strolling through my social media newsfeed on a particularly bad day. A dear friend had tagged me in a post on another friend’s timeline. She also has MS and a friend of hers wrote this on her page. It’s never easy describing MS to someone who doesn’t have it themselves, but this as close to a perfect description as one can get.
Shared here with permission by Wendy A. Simpson.
“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 on us, and many of those who think they do are sadly misinformed.
In the spirit of informing those who wish to understand, there are some things that I would like you to understand about me before you judge.
Please understand that being sick doesn’t 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. 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, please do.
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 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 crapshoot at best, because we can’t know how we will feel or what our physical 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. It is different for everyone. It is quite possible and often all too common, that one day I will walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog and the next day I will possibly have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane 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 please ask. 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.”
Can you relate?
Ellie is a 45-year-old woman living in South Carolina. She works as a cashier, but is always dreaming of more — she’s just not always sure of what “more” is. Her favorite hobbies are reading and reading book reviews. Within the first few minutes of meeting her, you’ll realize her nephews, niece, books and cats are her favorite things.
Please watch and share our MS Awareness video.