Well tonight is one of those nights where sleep isn't an option for awhile. We all have those nights where we can't sleep for one reason or another. I have been having more than my share of them lately. One would think that having children would be a part of what keeps me from sleep. However they have never kept me up.
I can't even blame my insomnia on Jon being overseas. Of course I think about him all the time, even when I am sleeping my thoughts turn to him. However my nerves about him being there aren't the cause of sleepless nights right now anyway.
So what keeps me from sleeping? It starts off with a muscle twitch here or there. Then it progresses to not being able to feel my limbs. Usually my legs, but on occasion my arms. After the numbing feeling begins, it's the not being able to MAKE my limbs move. No matter how hard I focus on trying to get them to move, they just refuse.
Then I have the awful feeling of seeing my legs or arms jerk uncontrollably of their own desire. That part is the worst for me. I can see them move, but can't do anything to make them move when I want them to. I can't make them stop jerking.
The lack of muscle control is starting to spread to my neck. There are days when it takes all I have in me to just be able to lift my head up. For the last week I have had the problem of not being able to move when I wake up. It has been taking anywhere from 2 to 4 HOURS after waking up to be able to move my legs, just to get out of bed. I lay here not being able to feel them at all.
It is the worst feeling in the world. Seeing your legs there and not being able to feel them or make them move. Once I am finally able to feel them again and get out of bed my day is usually okay from there. In the last two days though, I again have the same issue throughout my day. It is bad enough in the mornings while everyone is in bed and can't see what this does to me. During the day and evening everyone is awake and at home. They can see for themselves what this is doing to me.
Usually I am in my room when it hits me during the time we are all awake. Tonight though it hit me as I was sitting outside with my father-in-law. I'm getting pretty good at hiding the pain though. For the most part anyway. As soon as I could feeling the numbness starting I came in and went to my room. By the time that the inability to move hit me, I was safely in my bed.
This horrible disease is hitting me in a way that I wasn't prepared for. Two years ago when I was told what was wrong with me, I worried that I wouldn't be able to take care of my kids. Now, I have other worries on top of that one. Now I worry for Jon. He doesn't deserve to have a wife that he is going to have to do every little thing for. He doesn't deserve to be tied into a life with a woman that will never be able to be the wife he deserves.
I know he loves me, and I know that this doesn't bother him in the least. It bothers me. It pisses me off that my body hates me this badly. It pisses me off that my body is fighting against itself. It pisses me off that I am going to have to at some point rely on everyone else to do everything for me. That is the hardest thing to accept. I have always been the type of woman to want to do things on my own. I don't like accepting help from anyone. And now, I'm going to have to get over that issue pretty darn quickly.
I don't want to be a burden to anyone. My kids deserve to be able to be kids. My husband deserves to have a wife that he can enjoy life with. This disease can do what it will with me, I don't care. I can take that, I'm strong enough to handle all that is about to come at me with this. I can't handle what it will do to those around me.
There is something else that worries me too. This disease is genetic for the most part. I have four beautiful daughters. If I passed this on to any of the four of them I will never forgive myself.
MS you can bite my BUTT.
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