First let me start off by saying this is at my stage of the disease and my stage of the progression. It is not everybody’s MS path nor is it where you will surely be if your newly diagnosed. Everybody’s multiple sclerosis is different. On Valentine’s Day weekend in 2017 it will be 19 years I’ve had MS. It’s been a long time. I could be 1000 times worse and even though I struggle every single day, understand that I am also very grateful that I’m still on my feet most of the time. I mostly can manage my symptoms and struggles with rest, accommodations or medicine. With that being said I wanted to really explain what it’s like to be in my shoes.
My legs have always been my eyes biggest struggle with MS. They’ve gotten considerably worse over the years and walking is always gotten harder and harder. With each attack or relapse, there was always some degree that the legs didn’t fully heal. I got used to the fact that if I do too much, even just standing on them for an extended period of time, I would fatigue my legs. Once fatigued, I would have major difficulty walking. Sometimes if my legs fatigue, my body would fatigue with it. I’ve had a pass post about the difference between being tired and being fatigued. I tried very hard to explain this and it’s one of the most difficult things to explain to someone who doesn’t have an illness that does this. Tired is when you can take a nap. Fatigue is more like every muscle that you moved in your body is 50 pounds heavier than what it is and it’s that much harder to move it. It’s not just tired it’s that you can barely move just to scratch the itch on your arm. The moving is so difficult and so exhausting that you don’t even want to do it. It’s not tired although you may fall asleep it’s so much more than tired it’s I can barely move. I’ve always said this is and will always be one of the hardest symptoms of MS. Sometimes after you rest it will go away sometimes it doesn’t. Imagine trying to live your life feeling like all over your body you have weights attached to each muscle and now someone says to you move. Every time you now have to move it’s a struggle just to go 5 steps could feel like 100.
What has been newer for me is the hands and the arms weakness and numbness. My left hand has no tactile feeling whatsoever. My right hand has very little. It is very difficult now to have my hands over my head for any period of time. I was holding my daughters hands maybe a month or so ago and I realized I don’t feel how soft it is or how warm it is. When she was a little girl and she used to sleep in my bed I used to hold her little hands in mine and now I can’t even feel them. I know it’s her hands I can feel her fingers but I don’t feel her skin. I don’t feel the softness of her skin like I used to. The tactile feeling that I used to feel is gone. When I’m doing my hair I can’t feel if my hair is dry or damp with my left hand at all I have to always feel with my right hand. If it’s raining outside I can’t always tell if my dog is wet. I can’t tell if I grabbed my silk underwear or my cotton underwear when I’m getting dressed in the morning. I constantly stretch my hands thinking that one day that feeling will come back, it’s been over two years it’s not coming back. My arms do what my legs do. I’ve been doing a project for my mother for her birthday. I’m trying to clean up her brass mailbox which is so tarnished and has no shine. It required me to do a little scrubbing. Never even dawned on me that I was going to exert energy. I did fatigue my arms which then in turned fatigue my entire body. When I left her house it’s about 50 steps to get to my car. I had to stop three different times to rest. I couldn’t even get my walker into the car I had to do it from the seat of my car and shove it in the back somehow because I couldn’t stand to do it. When I got home I had a walk 25 steps to get to my front door. Understand these are my steps and I shuffle so a normal person who takes normal strides probably about 15 steps. I took a picture from my front door and you could see my car right through the gate.
It took me 10 minutes to get to my door from my car. That is my daily struggle that is my life now and that is how hard it becomes. Do you want to know what my reaction was? I laughed, I found it so funny. It was so pathetic and I laughed because what else could I do? I love to make my mother happy I’m too independent to asked for help, at this point anyway, and I always push beyond my limit. The truth of the matter is I have a lot of days like this where these simple steps become so difficult and sometimes I get frustrated but most times I don’t. Why? I’m still here. I can think of a lot worse things than having an MS. There are so many things in my life I’m thankful for I have an abundant life of love from so many people so don’t feel sorry for me. I don’t feel sorry for me. I just want you to know what a day in the life is really like someone that has chronic illness.