Monday, December 21, 2009

Email to a friend.

(why not? It's a decent MS summary.... and, I already typed it all....)

I have to say - I hate just putting the MS stuff out there, but how else to do you go about something like that? There's no real protocol for these things, as far as I'm aware. But it is something I like to share. If only because it does effect me at times and it's easier if people know that something is going on with me. Your response was wonderful - caring, concerned, genuine, and without hesitation. Thank you.

MS effects every person who has it differently. They don't know what causes it (part genetics? part virus? both? they don't know) and it is incurable. It attacks the central nervous system, causing lesions on the brain and spinal cord. Lesions are areas where the myelin (fatty coating on the nerves) has been destroyed, causing a disruption of the signals that the nerves should be conducting. There's no way to heal these lesions once they occur, but, there are drug therapies to slow down the progression of new lesions from forming. There are 4 different therapies that work in different ways, but they are all administered by injection. The one I chose - because it has the least side effects - is injected daily. And I hate needles. So that works out well.

I have a friend with MS (and another who recently passed away who had it), so when I first heard the words "abnormal areas of demyelination" in regards to a brain MRI I had done (for something completely unrelated, btw), my heart sank - I knew what the term likely meant. I had three distinct lesions. Unfortunately, it took a full year to diagnose the issue for sure, since there's no test for MS. Instead, I had to be aware of symptoms and possible symptoms over the year's time, have a mess of tests done to rule other testable things out, continue meeting with my neurologist, and have another MRI done at the end of the year - which was February of this year. March 13th (a friday the 13th, naturally) I got the diagnosis - three more lesions, bringing my total to 6, and various issues/symptoms over time. That's when I started the drug therapy and started trying to deal with the reality of it all. See, for the year prior, I had been content to shove it to the deepest parts of my lesion addled brain and pretend nothing was wrong. Ignoring it didn't make it not real though.

While the presenting symptoms can be different for everyone - physical, emotional, and mental - mine are, at this time, mostly mental and emotional, only partly physical. I have been on anti-depressants for over a year now. When my MD put me on them, I didn't even connect it to the MS, but my neurologist connected the dots for me. MS will often cause changes in the brain chemistry, so, yeah, no surprise there I guess. Getting my diagnosis certainly didn't help me "feel" better about it. I'm also quite emotionally unstable at times. They call it "emotional lability" - I call it "emotional incontinence". In case you didn't read the entry, this one sums it up well. So sometimes I find myself crying over nothing - or everything - at inopportune times. Like at work. With cadets around. That sucks. But I also can't really control it. And that drives me crazy - makes me feel like I am losing my mind. Sometimes I am overly anxious. Sometimes I am overly angry and short-tempered. Oh, and a lot of the time - as in more days than not - I can't sleep. I am exhausted, but not sleepy. That? Doesn't help any of the crying/anxious/angry stuff. I'm like a cranky two year old. I have a feeling you know what that's like.

It's fun stuff.

I also have cognitive problems. Some days I just can't find the right words for things or I have a hard time stringing coherent thoughts together. That's frustrating - given what I do and how many people I interact with on a daily basis. But, at least my fellow counselors know what I am dealing with and when I am having a bad day, I can continue to trip over my words and they understand and laugh along with me - which helps make it a little less frustrating. I also forget things sometimes. Like, one day I was driving home, got to a stop sign, and had no idea where I was or which way I should turn. None at all. I knew I was on my way home, but not where I was. I wasn't panicked, but more curious about how it came to that - like, how could I not know where I was? It cleared after about a minute (which, fortunately, I just sat there and no one came along) and I realized that I was 1/2 a mile from home on the road I have lived on since 1986. Seriously. I also one day forgot which tooth brush was mine. So I used both of them to see which one "felt" right. Stuff like that is weird, but it clears quickly, so I am okay with it as a weird footnote to the MS. I just hope it never develops into something long lasting - and I know that possibility exists.

My physical stuff is minor compared to what others suffer - and, I suppose, what it could become in time. (MS is progressive, so it will only get worse, the meds just try to slow the rate of deterioration.) I am weak sometimes. Like, I will pick Callie up and I feel like I don't have the strength to hold her long. Or my legs are achy just from walking around. Or I am fatigued overall - that is there a lot actually, the fatigue. Sometimes I just feel physically spent although I haven't done much at all. As in, all I did was sit at my desk all day. I also twitch. Like, little involuntary ticks in my arms, legs, torso, head, whatever. It's subtle unless you're watching me closely. And it doesn't happen all the time, but when it does, it can be annoying. I also tremor sometimes, mostly in my hands or legs. But that is minor as well.

It could be worse. Many people with MS have trouble walking, or numbness (which I do get occasionally, but not in any large way), and end up in a wheelchair. Others have vision problems that can range from blurriness and floating spots (both of which I have at times) to outright blindness in one or both eyes. So I realize, while I am at times completely stressed at how I feel, it could be worse. But the fun thing is? Stress makes all the symptoms worse. It causes flare-ups. And I mean, what's more relaxing than knowing your brain has holes in it? (well, not really "holes", but I like the visual of swiss cheese brain) So it's sort of a catch-22. Also? For some weird reason, heat makes MS worse - like the body has a harder time cooling itself, the core temp goes up, and the brain goes haywire. They really don't know why that is either, but it's been shown to be the case for the majority of MS sufferers.

I have no idea if I answered your questions, but I feel like I have rambled on for a crazy amount here - just on the MS. When really? It's just a part of life - like anything else I suppose. It's just something I need to incorporate into my paradigm.... I'm still working on that....

And in response to your other comment: yes, I over think everything. I spend WAY too much time in my own head. I have always been that way, but now, it has taken on a life of it's own in response to the MS stuff. Like, before, I used to simply think a lot - contemplate things in a more philosophical manner. I used to believe that things happened for a reason and if we just let go and follow the flow, there's a pattern and path. I still think that, to a point, but now? Now so much seems so wildly out of my control - including my own emotions - that it is all but impossible to just let go. Instead, I seem to try to apply a death grip to anything and everything that I value - like, my sanity. And that leads to greater anxiety. Because life, by it's very nature, is unpredictable. And I feel like I have had enough of that for now.

And, I imagine, you have had enough of this email by now!! Sorry to be so long winded. But, I appreciate you asking me about it - and I clearly have no trouble talking about it. :-) At length. Wow.

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