How Has Living w/SM Effected Me

In my worst dreams, I could never imagine that my life would ever be like this.

What's been happening over a two year period?:

I had a very difficult time realizing that I couldn't drive as long as I have tremors in my legs. I understand, because they are violent, constant and uncontrollable, however, losing my ability to drive is probably one of the worst loses of my independent life. The day the tremors started in my arms, I was almost as hysterical as I was the first time I wet my pants. Thankfully, the hand/arm tremors aren't as constant as the leg tremors.

As much as I've always hated even the smallest amount of pain, having to deal with constant pain is a nightmare that I can't wake up from. Every morning, I wake up with my pain level at a level 10 out of 10, on a pain scale. Some days it feels like 10+. It's so frustrating that I can't even start my day until the pain is at least a 7 or below. Unfortunately, on bad days (every day but there are worse days), my pain has never gone below a 5. On worse days, my pain stays between 7 - 9. Yep, definitely a nightmare but one I have to deal with. Every morning when I have to start all over again, I'm praying the pain management doctor can do something to keep this from happening. I'm choking back screams and tears because my husband thinks I'm whining rather than suffering. This is another debilitating symptom, it effects my ability to function and think logically/rationally.

The first time I wet my pants, without knowing, I thought it was a mistake. The second time it happened, I was outraged and wanted my doctor to fix it right away. Unfortunately, there is no fix but, at least, it doesn't happen that often. It normally happens when I stand or begin walking, however I'm afraid of the day it will happen in bed, especially if it's during a time when my grand daughter is over and sleeping with me.

When the doctor ordered a wheelchair evaluation, he said "to gain my independence back". I was thinking "how in the hell was I going to manage more loss of independence by being in a wheelchair". Haven't I been through enough, fix the tremors so I can drive, walk without pain or falling, and just be normal again. I now see the wheelchair as a way I can get around without the worry of going too far and not being able to get back because the pain and tremors are just too severe. Now I think "Thank GOD for this wheelchair".

My tremors, in all extremities, eventually became wild and totally uncontrollable, like the day I was admitted to the hospital. Since the doctors knew what they were dealing w/I was prescribed a nurse and a bath aide for 4 weeks. The nurse did her evaluation and decided that I needed a bedside commode immediately. She assessed that it was unsafe, regardless of the short distance, for me to try walking to the bathroom any longer. The next day, I had a bedside commode. Again, I was losing more independence. The only walking I did was to and from the bathroom. My wheelchair couldn't fit in the bathroom, so I used two canes and walked as safe as I could, with severe tremors in both legs. Also, when I lost my balance, if I made it far enough into the bathroom, there's also several safety rails I could hold on to. The bath aide showed me how to safely manage my shower. Her recommendation was to add safety rails inside the shower, I already had a shower chair.

Over time, I have developed an entire host of symptoms. Some are constant, some are come and go. No matter how they present themselves, they are all debilitating and depressing at the onset. There are times when I can accept and manage, new or an increase in existing symptoms, without going through depression at all. For the most painful and debilitating symptoms, I suffer/struggle with severe depression before finally getting to accepting, adapting and managing (although all still have a level of debilitation).

I have a hard time struggling with not having the emotional support from my family. Having physical support is wonderful and greatly appreciated but I think, in order to experience a complete acceptance of numerous independent losses, in my case anyway, it would make a world of difference having both physical and emotional support from my family. It would be great to be able to talk to my family about what I'm emotionally dealing with because of this illness. I believe they, honestly, would rather not know.