Tuesday, February 12, 2013

Waking up Paralyzed

Talk about a wake up call! I have never been so terrified in my life. You go from feeling constant pain, to feeling nothing at all. I never imagined that I could miss pain. I never imagined that I could not be able to feel my legs. I was terrified!

The night before was a little stressful. We had a huge plumbing disaster in the house. The primary bathroom upstairs flooded into the kitchen downstairs. My family room was soaked. My cabinets were ruined. The kitchen floor was destroyed. I was so upset only because I could not imagine the clean up or the cost that we would endure. I was stressing out because I am thinking about stressing out. My husband reminded me of the home owner's insurance and i took a breath. However my body had already absorbed and was processing the stress. I felt a little weak. One of my main MS symptoms is weakness. I also have myositis. Which is actually a term for weak muscles. So I felt like a rag doll but I was still feeling.

I remember tossing and turning that night. I didn't take much medication. I felt like I just wanted to rest. I only took my copaxone injection and my balcofen. I don't use an alarm clock. I have been opening my eyes at 6:45 for the last 20 years. Some days I jump up and hit the ground walking, lol. Then there are days when I lay there and look at the ceiling and listen to the house and decide to just roll over for a little while longer. It was one of those mornings. I felt a burning sensation in my back. I really initially didn't think of it much. I mean anyone with MS will tell you that the shocks and zings are standard. What freaked me out was I kept trying to pull my comforter over my feet with my feet. Imagine my surprise when NOTHING HAPPENED! I thought I was dreaming so I sat up on my elbows and looked at my feet. in my mind I was wiggling my toes. In my view my toes were not wiggling. I yanked the comforter off. The tears started flowing. The reality was, that in the back of my mind I always knew this could happen. I just didn't think it would happen to me.

I yelled for my husband, my kids, anyone that could come and tell me that I was okay. I ran my hand up and down my legs, I felt nothing. I yelled louder and louder! I will never forget the look on my children's faces when they realized what was happening to me. I wiped my face and my husband said, "We have to get you to the hospital." It was as if time stopped and accelerated at the same time. I was paralyzed. As we pulled out the driveway I remember thinking of all the times I worked in my yard, played with my kids, walked my dog, hung Christmas lights. Would I ever do any of that again?

Once we got to the hospital they were sure that I was having a transverse myelitis attack. They assured me that even though the damage sometimes be permanent mine was not.

Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body. (national institute of neurological disorders)

I was medicated, watched, a little therapy, and back home that night. I was walking with my cane! I felt like I was born again. There was nothing in this world that could compare to the look on my kids faces when they opened the door. Wow!

If you deal with MS then you know and probably can relate to my story. If you do not have MS, please try to understand how difficult this illness is. We have no idea what each day will bring. We live in fear of one day losing our mobility entirely. We want to live, to run, to jump, to soar as so many people do. We just get grounded sometimes and that is emotionally painful. But most of us can bounce back. We bounce back on walkers, in wheelchairs, with canes, with physical therapy, we can get use too whatever our reality becomes. We need you all to be understanding and empathetic. It takes time to get use to the ups and downs of this illness. We do not want pity. We want respect and we want understanding to whatever extent you can give it.

MS can be hard on everyone that is close to the MSer. It is a horrible, menacing, never resting illness. We learn to deal with it and it may change for the better or the worse without warning. There really is no preparation for an illness like this. What I think I can say on behalf of all my fellow MSer's is this. MS may paralyze many parts of my existence but as long as I have your love and support, it won't paralyze my heart. Hug someone with MS today and just tell them, "I am here for you." They may one day need you.


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