This quote is how I feel sometimes. There are people in my life that just being with them makes me feel accepted and understood.
But all too often I am faced with the obstacles with some people who will not understand me. That lack of understanding sometimes makes me feel the loneliest.
I want my friends and family to understand how this disease has changed me. Congnitively and physically I am not the same person I was. I am embarrassed to tell them how it affects my ability to provide directions as simple as left and right when we are driving in the car, it causes pain and flushing on my skin where just the softest touch makes me cringe. The same disease gives me issues with my bladder and bowels that I'm far too embarrassed to share with even my closest friends.
MS has also affected my sleep which is so important. I lay awake at night with muscle spasms, tremors, restless legs, flushing.
The physical changes and limitations are almost easier for me to accept and explain to myself and others. It's the cognitive changes that scare me and make it hard to explain to others. I remember 12 years ago before I was pregnant with McKinley I had an 'episode' where I wasn't able to have control of my speech....words didn't come out right. I tried to explain to my husband, my doctor, my friends but I couldn't even find the words. Eventually the issue went away and by the time I had an MRI appointment I was expecting so it was forgotten.
Now looking back I realize that was probably the first time MS was making an appearance in my life.
I have issues with my speech and cognitive thinking almost daily now. The word is right there but for the life of me I can't speak it. An example is giving my husband directions in the car. You would think an easy thing like left and right would be simple, a child could do a better job than I can now. And every time it results in an argument or an annoying look from my husband.
Because I can't put it into words without feeling completely incompetent and useless I stumble through the dialogue. Even if I did try to take the time and really explain to him how things don't work right with my thoughts and speech he isn't really going to get it.
How do I know that? Because 15 years ago I was him. I was that person who was annoyed when my mom couldn't find the word in her conversation. She couldn't provide sequential instructions or directions when asked. I get it now and I'm truly sorry I didn't before.
