MS Awareness Week: Just What Exactly Is MS Anyway?

Just about everyone knows MS is something not good. But many people do not know exactly what the heck it really is.

For starters, I can tell you some things it isn’t:

• We are not ‘Jerry’s Kids’
• MS is not contagious
• It is not curable
• There is no medicine that you can take to make it ‘go away’
• It is not like having a cold or the flu and you will ‘get better’
• Like old age, it ain’t no place for sissies (H.L. Mencken)

MS is a neurological disease that affects the nervous system. Because the nervous system manages every function in your body, MS can cause problems with every function in your body. It can affect EVERYTHING. Mobility, emotions, mentation, fine and gross motor skills, elimination, sexuality, everything. Wherever the nerves are damaged by MS, that area will not work properly anymore. Ever. And MS is indiscriminate in what it attacks. The effects can be anywhere.

The symptoms include numbness (not being able to feel your hands, feet or other parts), weakness, fatigue, pain (from damaged nerves and/or muscles spasms), depression, losing thoughts, blindness (temporary and permanent), bladder dysfunction…and these are the just most common symptoms. There are even more. Everyone experiences MS differently. Some people have most of these symptoms all the time. Some just have a few some of the time. Some have most some of the time. It is a total, unpredictable crap shoot. There are only two things that are pretty certain. One, you will get worse. Maybe you will never be bedridden, but you will get worse to some degree. And two, you have no earthly way of knowing how your disease will progress or what you can expect.

MS is a ghastly roller coaster and a never ending guessing game of what you will be capable of doing in a single day. What you could do on Monday, simple things like laundry, dishes, make dinner, run to the post office, could be out of the question on Wednesday. Wednesday could be the day that your legs will not obey your instructions. When the pain throughout your body is breathtakingly relentless. When it takes every ounce of energy you have simply to get dressed, after which you drop exhausted and breathless into the nearest chair. Sometimes you will have a great morning, but you will be crippled by fatigue and pain in the afternoon.

There is no pattern to this, no warning. And frequently, among your family and friends, there is difficulty understanding. How could you be fine (or sort of fine) one day and incapacitated the next? How come you needed a cane last week, but not today? And why isn’t a cane enough to go to the museum? You can walk (sort of), why do you need a wheelchair? Trying to explain these things, even to people who really want to get it, can be as exhausting and disheartening as having the disease itself.

Well, I needed a cane the other day because I was so wobbly I couldn’t walk a straight line. But that is gone today. I can’t use a cane for the museum (or the mall or the park) because it is too much. I can go short distances, but then my body rebels. For me, walking without stumbling or staggering takes enormous effort. If I overdo it and don’t listen to my body starting to tell me it’s tired, I will be laid up for days. I can’t run all my errands on Saturday like I used to, going from stop to stop until I’m done. Because by the second stop my legs are like spaghetti and I am so dizzy I have spots in front of my eyes. I have to go home and ‘rest’ and complete those tasks another day because today is a done deal. However, none of this shows, so you look pretty ok. That is the MS joke: “But you look so good!!”

I don’t know why or how I developed MS. That is another part of the puzzle of this illness. More women get it than men and more people get it who grow up in cold climates. So I’m two for two there. Statistically, there is a slightly increased possibility for my siblings and children to develop the disease. But mine haven’t. And there is no one else in the immediate family who has it either, not cousins, aunts, uncles, parents, grandparents. A rough count of these relatives comes in at around 120. I am the only one with MS.

Most of the literature will tell you MS is not a fatal disease. It is not overtly deadly. But because of the problems it creates, it can lead to deadly consequences. Immobility can lead to pressure ulcers which can lead to septicemia which can be fatal. The same with bladder infections. Many of us cannot empty our bladders. Those bits simply don’t work anymore, especially for people who have MS damage to their spinal cords. The pooled urine, that we don’t know is there and can’t get rid of, is an ideal source of serious infection.

Medications to treat MS patients can have dire side effects. There are breathing issues, swallowing and choking issues, and, at the top of my own personal repertoire, falls. The last bad fall I had primarily left me with nothing more than severe bruising. The bad one before that broke my shoulder in four pieces. How long before I pitch down the basement stairs and fracture my skull?

I know that sounds like pessimism, but it is actually realism. I don’t look for the worst, but the worst has a sinister way of insinuating itself into my life. It is simply another part of living with MS.

And there are ways of living with MS. After all, you only have two options, live with it or die with it. If you choose to live, life is hard but there are ways to manage.

For the rest of this MS Awareness week, I'll talk about other challenges of dealing with MS, such as treatments and coping. And I will share what people with MS believe is important for others to understand about having the illness.