Tuesday, May 5, 2009

Not giving up, mourning my old self, and finding a new normal

I'm in mourning. For many years I've denied I was sick and now that there is no question that something is wrong with me, I have to start accepting the new me. The MS me.

Initially, I intended to live my life post-diagnosis, just as I'd lived pre-diagnosis. The major problem with doing that is that the last few months before receiving my diagnosis were not "normal." My last major relapse was the first Wednesday in December 2008. It marked the last time I worked a full week and the last time I would be able to ignore my symptoms. The hardest part about going to the ER that time was not knowing what to tell the doctor and what was normal. Many of the symptoms that I've experienced full-time since December, started many years ago. I remember having this leg pain in high school and again in college after taking a dance class (which lead me to an orthopedic surgeon, 13 months on crutches/cane, and knee surgery). I've had numbness in my hands since high school (tendonitis) and all throughout my time at Colby and now in California (carpal tunnel, arthritis). Even the left eye blindness isn't new, that happened in August 2005.

What is new, is my acceptance and acknowlegment that I'm sick. And that I'm not making this up. (Oh, and the bladder dysfunction, which sent me running back to my neuro's office in February, that's new.) The question then becomes, if my symptoms aren't new, why do I seem so much sicker now. Well, three reasons.

1. For the past 6+ years, I've sought medical help and each time been told that there's nothing wrong with me. Everyone thought I was a hypochondriac and it began to hurt my friendships and relationships. So instead of talking about it, I ignored it. Even when it got really bad that I couldn't hide it, I would resist medical treatment because I couldn't stand having people think I was making things up. Until I got really sick in front of Nilaja and she wouldn't let me ignore it. As much I wanted to accept that I was having another really bad atypical migraine, she didn't believe it and pushed me to follow-up with a neurologist. Since then, I've been more honest about my health than ever before. What I've endured every day for the past few years is shocking and mean seem impossible to anyone who doesn't have a chonic illness, but there are tons of people wiht my story. We endure because we have to, until someone tells us that we have to slow down if we don't want to be crippled. That's where I am.

2. There is no question in my mind that the Avonex was making me sicker. Not just emotionally, but also physically. I don't know the mechanisms that make it an effective treatment, but it did not agree with me. I need to wait for 5 weeks of medicine to get out of my system before before I can really gauge my progress. I would like to find a new one and hope that it doesn't make me sicker. I also have to remember that no matter what medication I take, they do not cure the disease or send you into remission. It's like being in a moving car with no park or reverse gear. All I can do is speed it up or slow it down. The disease modifying agents slow things down. The disease doesn't stop progressing, but if the medication works, I may be able to slow the progression down enough to avoid complete disability.

3. The third reason that I think I'm sicker now may be due to the natural progression of my disease. This seems unlikely if you think of the disease beginning in March 2009. Especially if you believe I was healthy in February. Or even if you think of me being healthy in November, my current levels are pretty shocking. But I think of my disease in a broader scope. I count all of my major episodes- Hospital visits Dec 08, Jan 07, Dec 05, Jul 04, Oct 03; vision loss Aug 05- along with the doctor visits for numbness, tingling, muscle pain and weakness, and there's evidence of the disease from at least 1999-2000. So when I think about the disease in these terms, it's not so surprising that I'm where I am or that some of my symptoms are advanced.

But this doesn't mean that I'm going to sit back and let the disease take over. Not at all! I'm still fighting just as hard as before, but I've decided on a new goal. I can't keep fighting to get back to the normal I had before any symptoms showed up. That normal disappeared over 6 years ago, and it's hard to realize that I will never see that again. What I need to do now is find my new normal. Figure out what my very best is and work to maintain that, because no matter how hard I try I will always fail at reaching the old normal. I don't like failing, it makes me depressed, so I am making new goals for myself and will stop allowing the depression to be a weight on my shoulders.

Now I just need to learn how to fully manage my symptoms...

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