Wednesday, November 7, 2012

Six Years On

2006 was not exactly a banner year for me. In addition to losing my dear friend, Patrick, I was diagnosed with multiple sclerosis on this day six years ago. I had been having odd symptoms for months and I knew it was serious. I'll never forget sitting alone in the exam room waiting for my doctor to come back with the test results, thoughts running wild in my mind. Never have I ever felt so lonely and I seemed to be sitting there for an eternity. When he finally came in and told me what was going on, I'm not sure I could even tell you what went through my mind then. It was a jumbled confusion whatever it was. What did this mean for my life? What was going to happen to me? Why me? A sort of fog settled over me as I tried to parse this information.

In a sense everything had changed and nothing had. I was still the same person I always had been. Now, I just had this to aspect to me that I had to accommodate whether I like it or not. At least in the short-term, nothing was much likely to change. Down the road would be a different matter, but how long before that happened? How long before I could look forward to using a cane, a walker, or a wheelchair? How long before physical difficulties started having a serious impact on my day-to-day living? These were now questions that settled into my head and are always there, always lurking in the background.

I was lucky enough to get involved in a study being done on two MS drugs that were currently on the market - Copaxone and Avonex. The study was looking at whether these two drugs worked better when taken together or separately. The Copaxone was a daily injection that had few to no side effects. The Avonex was a weekly injection that made me feel horrible with flu-like symptoms for about 24 hours. It's a good thing I don't have a problem with needles because I was now poking myself eight times a week. The drugs are not a cure for MS which doesn't exist. Their purpose is merely to slow down the advancement of the disease and delay the onset of more serious symptoms.

I was in the study for nearly five years before I quit. The side-effects of the Avonex were having a serious impact on my quality of life and I just didn't want to put up with it anymore. That meant, of course, that further treatments would have to come out of my own pocket. Even with insurance, I was looking at hundreds of dollars a month for anything on the market. That's not exactly feasible for me at the moment, so I haven't been taking anything since then.

The disease has definitely progressed. My most common symptom is fatigue which really hasn't changed much since my diagnosis. On most days, even when I have gotten a proper amount of sleep, I feel very tired by mid to late afternoon. Whenever I have a chance (read: weekends), I try to take an afternoon nap. What I do deal with more frequently now than I used to is numb spells. My right leg is the most common victim and it will just go completely numb for a few seconds. This can lead to some entertaining results such as when it happens mid step when I'm on a flight of stairs or jogging across a busy road just ahead of oncoming traffic. The spells are brief and then sensation returns as if it never went away. They're more an irritant now more than anything. "Oh, there's my stupid leg going numb again. I guess I'll keep forcing myself to walk and hope it goes away in a second."

One good thing the MS has helped me with is that when I was diagnosed with type 1 diabetes a year-and-a-half later, it wasn't all that big of a deal. What's an incurable disease when you already have one? Pssh, it's old hat. That sounds like a really sad sort of good thing, but it's true. The diabetes diagnosis wasn't near so hard to hear as the MS diagnosis.

I'm not sure there's anything else I could really say that's been good about getting MS. Oh, I could probably spout some banal platitudes about appreciating life more or blah, blah, blah; but those all sound so silly. Sometimes shitty things happen in life and there's nothing to be done about it. You simply have to adapt to it and not let it get the best of you. I think I do all right most of the time. I'm human, though, and have moments of feeling sorry for myself. But for the most part, I'm just like, "I'm Shane Noble and no goddamn incurable disease is going to get the best of me." Or at least I try.

2 comments:

ASPIRIN742 said...

Good blog. I didn't know that about you. Now, forever after you're going to be referred to as Sir No Goddamned Disease is Getting the Best of Shane Noble in my head.

I like your attitude.

Bluntforcemama said...

Bad things happen, and there's no reason. You have always been admirable in your perseverance.