I have a hard time talking about Multiple Sclerosis (MS as I will refer to it the rest of this post) because I do not want to do the disease a disservice. I truly believe that it is a serious disease but I try not to approach it in that way. I live my life in humor and reality. My friends and I can joke about it and I not feel offended. I know the disease and it’s progression. I know that it is an autoimmune disease that eats away the protective covering on your nerves. I know that after an episode/exacerbation, you may not regain the complete use of whatever area was affected. I know that there is no cure but a lot of medications with horrible side effects. I know that there is so much more that I will not put in this post. But most importantly I know that I have MS.
I know people say that you shouldn’t claim an illness or disease. So I’ll say, I have signs and symptoms of a person who has MS. These past weeks I have had signs and symptoms of a person who is/has had an MS exacerbation. I even participated in a treatment recommended for someone who is having an exacerbation. I really didn’t want the treatment but I realized that I wasn’t going to get better without it. This time was different though. I went to the hospital 3 days in a roll to receive steroid medication intravenously. By the third day I felt better as usual. The day after still doing good. The second day after, which was a Sunday, I couldn’t get myself to move. I had severe brain fog and my body wouldn’t cooperate. I was laid low. This had never happened to me before after a treatment. I rested all day and was so thankful that the next day was a holiday. If I had to work, I would have called off. I DO NOT call off work. By Monday, a little less brain fog and some mobility gained. Tuesday back to work. I made it through the day. Thank God it was my short day.
Now here I am a week later, feeling better still but not who I was before the episode. Walking more like a person than a penguin. Can walk without the use of my stick. Also have the ability to do my job without questioning every little thing I do. Thankful, blessed. I am thankful for everyone that prayed for my recovery and healing. Thankful for the concern from my friends, family and coworkers. Thankful for those who came through for me when I needed them. Blessed that my doctor and his nurses responded quickly to get me in treatment. Blessed to be able to go back to work. Blessed to continue to live an independent life. I don’t take it for granted.
There are many things that I have learned since I have had the signs and symptoms of MS. I’m only going to touch on a couple. I have learned insecurity. I have always been a pretty confident person (thanks Mom). This disease with its limitations, will suck the confidence right out of you. I am not an aggressive woman but if I see someone interesting, I would approach him. Yea….not so much now. Now when someone approaches me, I am even reluctant to talk to them. They see a happy and what looks like a healthy young lady. I know that I am damaged goods. So when do you tell them? At that time or later on when you thinks he likes you enough to still call? I also learned an urgency to live now. My signs and symptoms point to the possibility of a wheelchair in my future. Yes you can still live in a wheelchair, I realize that. But there are activities that would be challenging or impossible to do in one. I want to do all of them now. I want to make memories. Have stories. I don’t want to think I missed out on anything. That is one of my greatest fears.
I truly skimmed over the top of MS. I honestly don’t like talking about it at all. The only reason I did was due to the recent episode. It was such a new and humbling experience for me. It requires acknowledgement. Up until this point I have had an easy journey with MS. I can still walk, work, even dance a little. I have never been hospitalized. Never required someone to wipe my ass. Never used more than a walking stick. Never missed a day of work due to MS. Have always been able to transport myself. Except for a few things, lived a pretty normal life. This episode showed me the true face of MS. Showed me that I may be just one episode away from all the things that I fear the most.
I don’t want to discourage anyone from asking me about MS or my journey. MS, though not talked about as many other diseases, is on the rise. Still I didn’t know exactly what it was until I was diagnosed. So please feel free to ask any questions. And I even encourage you to put them in the comments section because it may be the same one someone else has. Or you can always email me at elsims27@yahoo.com.
Thank You Ebony, This made me look at MS as it relates to you, totally different. Stay Strong Sis…
Thank you. I still don’t take it seriously so we can still joke about it.