Current detail of MS damage

I have posted a few other times about the specific types of MS symptoms I have been dealing with the last few weeks. A new symptom popped up today, which is a constant and fairly intense flicker in my left eye. My walking has not improved in the last few days, but I have reached a level where I can often get around without my walker if I walk very slowly and carefully. It makes Christy nervous, and looks pretty pathetic, but I can do it. Feeling has not remotely returned to my feet, so as of now I have not driven in two weeks. Very large patches of muscle in my left leg are so weak that that the leg will just give out at random.

I do probably look better than most people might expect. MS is a neuromuscular disease. In other words, it is caused by damage in my brain that impedes nerve signals in my body from getting where they need to go. If people expect me to look like I have the flu, or cancer, or some other obvious illness, they will be surprised. When I use my walker, my walking is fluid and fairly graceful. My upper body is in great shape (other than my eye), so I don’t look gaunt, and I am as strong above the waist as I’ve ever been. I can dress and clean myself (thanks to the new rails in my shower), make my own food, and in many other ways fend for myself. The issue is mobility. I struggle to get places, but once I’m there I can function at least somewhat.

My spirits are mediocre. It’s 3:30 a.m. I’ll be going to bed soon, but I’m not tired. The steroids I’m on make sleeping extremely difficult, and MS itself is also connected to insomnia. Days are running together, for sure. But I am not angry or bitter or afraid. I have not once asked “Why me?” I am greatly enjoying connecting with so many here and on Facebook, and it’s a blessing to feel as loved as I feel by so many. I am not depressed, and I can still honestly say that I am perfectly willing to accept whatever comes. I can also say, however, that if I DO recover what I have lost, I will be in better shape six months later than I have ever been in in my life. Now that I know I am really vulnerable to some of the worst MS can give, I want to be in unbelievably good shape so if and when I hit another huge road bump I’ll be in far better condition to begin with than I was this time.

I don’t think consciously of God all that much most of the time. I do little to force myself to get there. Occasionally I simply ask myself if I’m staying in the moment and if I answer yes, I know that’s always where God is, and the peace I have most of the time reflects it. I have not opened a Bible one single time since this started, but the pages and paragraphs of scripture I have memorized throughout my life are running through my mind a lot lately! In fact, I’m doing almost no reading at all — of anything. TV here and there, and a lot, lot, lot of writing.

Tonight I ambled into the kitchen and washed the dishes, which was pretty sweet. It’s the first productive thing I’ve done in weeks around the house.

Doctor-wise: I start physical therapy at Genesys on Tuesday. Then I will see my MS specialist at Beaumont again (supposed to also be Tuesday but they are calling to reschedule). He’ll evaluate whether I’m continuing to get better, or whether I need to go right back into the hospital again to start another five-day steroid course. That my eye acted up today is cause for concern, I’ll be honest. It’s not good that not only am I not recovering much lost function yet, but am still deteriorating in various ways. This is the cycle. Zap these active lesions with mega doses of steroids. Do PT/OT to strengthen what remains and get in shape. See if symptoms improve and make sure no new symptoms are occurring. Repeat if not seeing desired progress.

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  • I also have insomnia but not from MS. Last night in my wakefulness, you came to my mind three different times and I prayed for you. Just thought you’d like to know that! God loves you and so do I.