Archive | single RSS feed for this section

The MS and me

30 Sep

It is October.  Not yet, but in one day it will be October. This is the month that I always feel is the beginning of my year. Maybe it is because I am an October baby or maybe it is because I am the daughter of teachers. Either way, this is the time of year that I reflect and make goals for myself. Obviously the possibilities project was a horrible failure, after one day I aborted the project. I realized that I wasn’t ready. Truth is, after reading my friend’s Blog, I realized I didn’t want my blog to be a creative writing project, but maybe a space where I could be completely honest. I carry around so many feelings. If a person as me how I am doing, I say I am fine. Totally fine. I am lucky. Truth is I am lucky, I have great parents, a great big brother, a group of talented and interesting friends and a job I mostly love that inspires me.

  Notice what I left off the list, I am healthy. As Joan Didon said, “I am a healthy sick person”. Last December, five days before Christmas I was diagnosed with Relapse Remitting Multiple Sclerosis. I had MS before Jack Osbourne made it look cool. My body went through a full check list of symptoms. Which wasn’t fun at the time, but it made being diagnosed easy. MRI lesions on the brain- check. Numb left side- check. Unable to balance- check.(it became a kind of party trick for my roommates and I. Watch me walk like a drunk. It was funny) Electric shocks when ever I turn my head- check. Extreme fatigue- check and check. Seeing Double- check. I remember when the eye doctor ( I forget his proper title) told me sadly that I had demyelination behind my right retina. I was so happy that I wasn’t making seeing double up. I thanked him. He looked at me oddly. I needed evidence that what I was experiencing was not in my head, well it is in my head- but you know. I had some friends say some really insulting things, not believing that what I was experiencing was true. I had to leave my job, until my body became healthy again. It has taken about 10 months before I it began to feel well again. I thought in August with my return to work, that I have this MS thing under control, it is a secondary problem. I can ignore it. I will take my needle at night. I will attempt at eating healthy, I will work out and I will have balance in my life. This MS thing will not bother me for years! Wrong. Every time, I don’t get enough rest or I push myself too far, my body reacts. My legs are heavier, especially the left side, my fingers tingle and the fatigue sets in again. I crash. I have one crash day a week and every time I crash, I am surprised. It is different than just being tired, because tired you can push through it. I feel like it is comparable to not sleeping for about a week.(what most new mothers go through) Your limbs are heavy and every thought is fuzzy. I become very sensitive to sound. It feels like everyone is shouting in my ear. All sounds are heightened. Every time I have a crash day, I get a little low. I think I should be used to this, but I am not. I don’t know if I ever want to fully get used to it because then that means part of me has expected that this is my lot. I feel like my body has betrayed me. I have to fight myself and figure out how to live well with this disease. I have to figure out how to come to peace with the MS. That is my goal this year- to live MS well. It is going to be here and I might as well get used to it. I have always been a positive person and this is my battle. To be positive about MS. I like my outlook on life. I need to learn that I am enough.

Yup that is my goal for my 34 year- To learn that I am enough as I am. The MS has not broken me. I went to a doctor for something and they asked me if I still have hope for myself. What an odd question, but my response surprised me still- Yes, of course. My Doctor said, you will be fine then. I still have hope, but I still feel broken. A lot of work for my 34 year.