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Musings From A Night Owl

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With my auto-immune disease I suffer from insomnia. I hate this particular side effect of my disease and the medications I take. I get tired I sleep, even with the Trazadone I still have moments when sleep does not come up. I have learned not to beat myself up over this issue. I am learning, though at times it is a huge challenge to accept this reality of mine. You see I know how vital sleep is for one’s body, and yet it alludes me. Before my illness I used to put my head on the pillow and within minutes I would be fast asleep. I miss that woman.  That woman is long gone.

So since this is one of those nights I have decided to be productive with my time. I put on a movie to listen to while I am organizing and cleaning around my bedroom. My caregiver will be here tomorrow morning and he can take my garbage out for me so I like to make sure I have it all gathered up since I won’t be seeing him until Tuesday morning and that day will be busy. On a

One thing that has been an improvement is that I am slowly doing more things on my own, like washing my dishes. You are probably asking why I couldn’t wash my dishes. The reason I couldn’t was because it wore me out with all the maneuvering and of course my breathing was not sufficient. I hated not being able to wash my own dishes, even if to me it was the worse job ever, I still missed that aspect of my independence. Oh how I miss my independence. Though slowly, as I am progressing with my life anyway my independence is coming back. There are some things I absolutely miss, like driving. I miss being able to jump into my car, if I had the extra gas and go exploring. Or even just drive up to Longview to hang out with some of my friends or my family. I haven’t been able to do this in quite a few years and I miss that. I miss also the ability to smell. I miss the smells of lavender, basil, and rosemary. I miss the smell of the rain. I miss the smell of the flowers. I will not whine tonight.

One of the things I have done tonight while not being able to sleep was get down on the floor on my hands and knees and clean out from under my bed. It is amazing what kinds of things get loss in the chaos under the bed. Not only did I find my cat (his favorite hiding place) but I found pens, paper, cat toys, and other misc. things that I wonder where were. Under the bed is a lot like the dryer, mysteriously socks get loss and then suddenly they turn up out of nowhere. How does that happen? Is there some kind of vacuum vortex that sucks everything under the bed, because I know I don’t put things under the bed. While cleaning around my bed and organizing my things besides my bed, my bedroom is a lot like my office. I store my medications, all the paperwork for the numerous doctor visits I go to. I have learned to ask for copies of everything because well, the computer doesn’t like to share especially with other computers and I want my team to have all the information they need to keep me healthy.

Later on: This morning when I woke up from the phone calls and texts because it is a big day for my family. I am happy to report my aunt made it through the surgery and will be in the hospital for a week. Also my caregiver and I talked, in between jobs he and I will be shopping. I am happy, because some things I will have a hard time living without until Tuesday. I love that he and I have learned to be flexible with each other when it comes to scheduling. I will be seeing my new therapist today and I hope to talk to him about a few of the things that are on my mind. And boy do I have a lot on my mind. This coming week will be a busy one for me, my Rituximab treatment on the 5th and then my SOAR training with a great group of gals on the 6th and the 7th. I am going to be exhausted by the end of the week, but I know that it will be a good exhaustion. One thing I am learning is that no matter what happens with the progression of my disease I still can live a life that is fulfilling and amazing even if sleep eludes me. 

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