Now, nothing is the same. Now, exacerbation's suck. My exacerbation's all seem to target specific areas. The same areas every time. The left leg and foot, both hands, my balance and my right eye. Occasionally my speech is also effected, but not always. I've always considered those problems to be simply "inconvenient". The problems are always present to some degree as over the past few years each remission following an exacerbation brought less return to full function.
However, it really wasn't that big an adjustment, because it was so subtle. It wasn't like I would have an exacerbation and there would be this big difference. While during the actual exacerbation there would be noticeable changes, within 2-4 weeks everything "settles down", the exacerbation winds down and I try NOT to focus on the struggles I had during the acute phase. I simply wait to see what returns to "normal". This tends to be the hardest part for me as patience definitely isn't one of my strong points! (It takes 4-6 weeks for the myelin sheaths to regenerate. If they are going to. If they regenerate, function returns. It's when they don't that the residual problems result. Permanent damage to the myelin sheath means that the nerve impulses can't get to where they need to be. That's what really causes the problems. The impulses are needed to send the messages from the brain to the muscles to move). For me, things like being able to use chop sticks when I had sushi started becoming more challenging (I STILL try to use them tho....it just means I leave rice behind and use the fork). Dropping things like silverware and pens and trying to pick them up became more challenging because my hands simply aren't as coordinated as they used to be. I've found that using thicker pens makes writing easier as sometimes holding a thin pen is a challenge. It means I have to be more conscious of how I move so I don't end up on my face :0) and I use plastic glasses to save on glassware if I'm having a "bad hand" day.
I usually don't call my MD for treatment of an exacerbation unless I start having vision problems. I know this often frustrates her as by the time I call her, I'm well into it. However, while I'll try and just "get through" an exacerbation, the first time I notice blurred vision or pain with my eye (it's always the right eye), I'm on the phone. I won't risk the eyes. I just know that the only way to stop a serious exacerbation is treatment with high dose IV steroids. NO FUN. While I think I'm a pretty tough cookie...steroids lay me out. I try to avoid them at all costs, but I also know when I can't. Hence the second round of steroids in less than a month begins in about 9 hours.
There is so much mystery to this disease. They don't know what triggers it, or how to stop it. I do know that I absolutely have to watch my stress level. I know that if I'm under a lot of stress I run the risk of an exacerbation. The trick is trying to find balance. Not always easy in the world we live in. Bad things happen, we push ourselves too hard, don't get enough rest and get run down. We worry about things. Unfortunately for patients with MS, that often means a "double whammy". Dealing with whatever the stress is in your life and hoping that your managing it so your immune system isn't triggered to start attacking your central nervous system. Easier said than done, especially for Type A's. That's when "Train wreck Fatigue" (a term coined by my Sister-In-Law MB) sucks the Type A right out of you. But that's a whole topic unto itself.
Well, I think it's time to call it a day. Tomorrow is another day........
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