I come to you in the night, restless, sleepless and in pain. Difficult days have passed and more to come. There is no end in sight. Last night I stayed up with the man in the moon and went to bed with the sun rising. Music got me through that night. I composed and the pain became a part of the rhythm of the song. At least it made sense in this venue, the throbbing keeping tempo.
Tonight, or should I say early morning at 2:58 a.m., there is no music in me not for lack of trying. This time pain became the focus and nothing would stand in its way. It wanted center stage and got it.
It amazes me how much we can take. You have to take it. It’s not going away. It’s a part of our lives. Those of us who are fighters, cook with it, clean with it, pursue hobbies and work with it.
Those of us who are not fighters, succumb to it. Lie in bed with it. Curl up without getting dressed all day. Let the house go and enhance their losing battle.
Vertigo, seeing double, unable to control the movement of ones eyes, spasms in legs, arms and hands. Confusion, incredible fatigue, narcolepsy tremors in hands and head. Leaning body and head and–pain, pain, pain.
Even if you’re surrounded by hundreds of supporters who love you, there is no one to talk to. You can try to explain, at least in the beginning, but people just don’t get it. Now you lock yourself inside your head and don’t bother with explanations.
You quietly sit and listen to people’s chatter while you urinate into your adult diaper. No one knows but you. You excuse yourself and take your cane as your companion to the bathroom to clean up and change. You return and continue to listen while a myriad of other things are happening to you that no one is aware of. You’ve learned to mask it well.
My mask is my smile.
My take on this:The reason I place this on the bottom of my blog is because the inside of me pours out while I'm writing. I'm not really all that aware of what I'm saying or where I'm headed each time I sit down to write. I'm not an itemizer of what I've done during the day. I've read too many blogs like that and quite frankly, I find it boring.When I'm done writing, I sit back and read what I've written. It is at this point, that I give the blog a title. I think most people first have a title and then fill their blogs with something related to it. Not here. It is also at this point that I can read what I've written and decide, should I say something about what this author has spit out or not? So, my take on this--- I don't often write an entire blog that feels so negative. This one came out that way. I've had too many sleepless nights in a row. However, I know me and I respect me. I respect the person I've become and the strength that I have learned to develop in order to keep myself out of my wheelchair 24/7 and the myriad of other things that I do each day to keep my mind active. One thing that struck me was this thing about "no one knows". This is true. They know but they don't know. In order to show compassion to us they bring the focus back around to themselves by mentioning that they too are tired which is completely just the opposite of what a person with MS wants to hear.No, you do not feel as I do. It is my ambition to make you understand. To teach you about this disease in the most profound way by showing you, in detail, my life through my words. It is my ambition to talk about this to groups of people and educate on being a solicitous listener. We need people to talk to. For me, loneliness is the worst part of this disease.