Most of the time when I write, I try to find the humorous side of things, the bright side of things, and just generally keep it light. Today is World MS Day. Some people think that World MS Day means that we are celebrating the disease. Um, no. I'm taking this day to raise awareness, describe what it does, and what it can do.
Since you already read my blog, you have an idea of what it's like for me. I'm going to let you know what it could be like for me; what it's already like for other people.
As you know, MS is an incurable disease of the central nervous system. The body attacks itself, specifically the myelin sheath around the nerves, causing the nerves to misfire. 
You've heard me say that it's like the plastic insulation around an electrical cord. When the plastic coating is intact, the cord works exactly like it's supposed to. If there's a chunk missing from the outer layer and water gets onto the actual electrical wiring, you've got trouble. That's what is going on inside someone who has MS; we're missing pieces of the coating that protects our wiring.
There are more MS drugs now than there have ever been, but none of them will fix the damage that already exists. Unless science discovers a way to repair nerve damage, we will never be cured.
Several years ago, a classmate who lives abroad was in town for a while. A bunch of us made plans to get together and do something. The day arrived, and it was really hot, like 87° super hot. I had to cancel at the last minute. The plans involved a certain amount of walking, and I knew I'd be an anchor to the group because I had trouble moving. How many times have you canceled plans because of nice summer weather? If you have MS, I know you have.
MS is a thief, a sneak, a rapscallion and a scalawag.
MS steals health by taking strength, temperature control, vision, bladder control, bowel control, stamina, cognitive function, memory, and in many cases, your ability to walk, your ability to work, your friends and social life. As if that's not enough, MS leaves other things in place of what it takes. MS gives you numbness, fatigue, tingling, insomnia, headaches, fatigue, itching, emotional changes, sexual problems, fatigue, walking problems (if you are lucky enough to still be walking), dizziness, balance problems, speech problems, swallowing problems, tremors, breathing problems, fatigue, and depression.
Because it's more difficult to move, I know I'm much less active than I used to be. Many days it's a mental struggle between telling myself what I need to do and telling myself what I have the ability to do. Some days, I feel like me, and some days I feel like a lump. And that's the other thing about MS; it's sooooooooo unpredictable. It's a day-by-day, hour-by-hour, minute-by-minute disease. Oh, but much less active. Yes. I've gained weight, and I'm sure it's due, at least in part, to being nearly sedentary because of MS.
If I have a day that's relatively pain-free, the fatigue is always there. Always. So if I have the ability to overcome the pain on a given day, I have to claw through the fog of fatigue. MS fatigue isn't simply being tired. MS fatigue permeates every fiber of your being. I've heard and used many analogies to describe the fatigue, but I'm going to use one I haven't said yet. MS fatigue feels like there is a stronger pull of gravity. What I mean is that something as simple as picking up a coffee cup requires us to use energy that's already in short supply for us. When we need to stand, it feels like we're fighting against an invisible force pushing us back down. Things that I used to do without thinking, like straightening the house, dusting or vacuuming now require planning and copious amounts of breaks. If I do this, I won't be able to do that. It's a constant battle of doing and resting.
The good days are so welcomed, but we tend to overdo it because we never know when we'll feel that good again. Take my physical therapy anecdote from the other day. I pushed, then I pushed the next day, then I was down for two days. Then I had a good day, did too much, and aggravated my back. Another down day.
I had physical therapy yesterday, and I had muscle soreness, but nothing horrible. My daughter had a concert at school last night, and 20 minutes of sitting in a wooden school auditorium seat undid much of the therapy's good. By the time we got home more than two hours later, I was in a lot of pain. I even left the concert to sit in my car for a while because I have heated seats. The back issue will go away; the MS-related issues never will. Let me reiterate: MS never goes away.
When someone asks me how I am, I'm always fine, or okay. I don't really know how else to answer the question. Do I answer with “I'm especially tingly”, “I can't feel my right hand”, or “I'm really mentally foggy today”? No, I say that I'm okay, the same way that you do when someone asks you. It's such an automatic question for us to ask, “Hi. How are you?” that we don't really expect any other answer besides “I'm fine, how are you?”.
Only I'm never fine or okay. Some days are closer to okay than others, but I'm never really, fully okay. I have some combination of the aforementioned symptoms on any given day, along with the ever-present fatigue. With summer looming, I'm dreading the heat but looking forward to the season. When it gets too hot for me, I can't even muster the strength or energy to cool off in the pool.
I went from being a workaholic to a person on disability because I discovered the hard way that I can't even work part-time.
I've gone back and forth about posting this as you see it. This post is so unlike me; unlike my regular entries. It's really not positive in any way, however, it's World MS Day. Ultimately, I decided to keep it raw and “real” because even though we look fabulous on the outside, on the inside we are short-circuiting like crazy from this incurable, essence-stealing disease.
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