Hello friends,
I know it has been a long time, please forgive me. The last few weeks have been very difficult. I tend to withdraw inward during difficult times, so I suppose the last few weeks are no exception. When I started this blog I decided that I wanted it to be a positive reflection of my journey. When I first ventured out looking for other people living with MS I found that more than a small portion of the people I encountered seemed to be held hostage by the disease. Their mournful lamenting about all they have lost was a serious downer, so I wanted this blog to be anything but. However I have come to realize that if this is to be an accurate reflection of my life, it must include the positive and negative.
When I see so much negativity and pain in my work, it makes it a little easier to appreciate the things that I have been blessed with, but stress is subjective. I am sure the things that stress Donald Trump and Bill Gates are far different than the things that keep me up at night, but they are no less intense or important. Of course the preeminent issue for me is my health. There is no way for me to ignore the changes in my daily activities.
I am walking better than ever, but I regularly use my power chair at work. This is often very surprising to the people that I work with. They will see me up and walking and from the look on their faces it is almost as if they have witnessed a miracle. I use the chair to assist with fatigue. I work in two different buildings in a decent sized hospital. If you have ever travelled between buildings in a hospital then you know that the distances can be significant. It takes a great deal of energy for me to walk. It takes a great deal of focus and concentration to put one foot in front of the other. In the beginning it was the vertigo that was the biggest issue. That has gone away, but I still struggle with balance. It is difficult to orient myself in space. It is so hard to explain, but my perceptions of how much to shift my weight from one leg to the other while moving the opposite leg forward is not automatic for me anymore. It is especially hard when I don’t have something to “ground” me. Like a wall to run my hand along as an extra bit of information about where up, down, left and right are located. When I am walking through open space I often find myself sticking my arms out like I am blind or walking in a giant moon bounce. This effort can be exhausting and the more tired I am the more difficult it becomes. I hate to admit it, but I have actually had a fall. Luckily I only had a small scratch on my arm, but it definitely bruised my ego significantly.
I only use the chair while I am at work because I thought I did not need it outside of work. I think I might have been wrong. My world has become so much smaller. I am starting to realize that I often avoid leaving home because I worry about the distances that I might have to walk. Mostly I just go to work and go home. It can be hard to keep your spirits up when there is so much monotony. One day just starts to melt into the next. I try to be more active, but it is such a delicate balancing act. It is almost like every hour of activity requires 2 hours of recovery. Just this Sunday I slept for over 18 hours, basically only waking up for meals. I may have gotten a few things done on Saturday, but absolutely nothing on Sunday. It is hard to decided just how much I am willing to sacrifice.
It is ironic that an article written about my recovery by Mary Free Bed was recently published. (http://www.hoperestoredmfb.com/patient-stories/nickyl/) The article talks about my positive outlook, but lately positive is not the description I would have chosen. Seeing this article and the wonderful comments from my friends was a huge boost. It reminded my why this blog was so important to me. I will try not to let the blahs take over and continue to share this journey. Thank you all for listening. Talk to you again very soon!
