I’ve been having trouble sleeping. It’s as simple as that. Sleep was never a problem for me before. I would just lay my head down and go to sleep mostly because I was so tired just from existing with this disease. Lately I can’t get through a night without taking more pills to help me sleep. It makes me dread going to sleep because I know I’m going to wake up at 3:30 in the morning and feel completely disoriented wondering where I am and wondering why I can’t move. My hand turns into a fist at night so I can’t pick anything up. And makes getting my pills and water very difficult.

It makes the next day very difficult because everything about my disease is on high alert. My pain is off the charts. I get spasms that I never had before since getting the Baclofen pump. All I want to do is sleep and that just doesn’t feel like much of a life to me. Having caregivers around all the time is also a challenge because I feel like I need to be engaged or engaging at all times and it just doesn’t happen. It’s fair to them it’s not fair to me. I feel like I’m being watched all the time or judged for the way I’m spending my time. Even though I know that’s not true it’s still a feeling I can’t shake.

I get the urge sometimes to just go to sleep without any pills at all just to see what will happen. But i don’t have the nerve to do it. A night without sleep just about kills me and ruins me for the next day.

Today I could have used another few hours of sleep but I had to get up because I had a medical procedure that had to be done at 10:00 AM. I’m having a hard time keeping my body upright and keeping my eyes open. I feel like I’m going to jump out of my skin. Where what I jump to? I’m not sure maybe back to the days when I could stand up and move around by myself. Those days I really miss I can’t seem to get this new lifestyle engrained into my life so that it feels normal. I don’t know if it’ll ever feel normal to not be able to stand up and walk around on my own without help. That’s what I’m waiting for those days for those days to come while I’m waiting I waste time trying to figure out how to build the hours between the hours that I’m in bed and the hours I spend in my wheelchair. I’m running out of topics to write about anything of interest it feels like because my life is just an endless circle of being tired and trying to sleep and not being able to sleep and then being more tired and on and on and on it goes.

I’m waiting for my lunch to arrive and in the mean time I’m trying to write this post and make it make sense by dictating instead of typing and it’s very difficult because that’s not the way I like to write. I like to write with my fingers but my fingers aren’t working at the moment so it creates a problem for me. It’s a wonder to me that anybody reads this blog anymore because there’s really nothing to say beyond, “what should I be doing?” Nobody has an answer.

It’s been suggested to me that I should play games on my phone or read like I used to but that just makes me fall asleep so I can’t really do that. Games on my phone don’t interest me they seem silly and childish I don’t get into that at all. I want to be able to paint and use my skills to express creativity but that gets harder and harder because there’s really no easy way to do that without potentially making a mess and then I have to ask for help again. It’s like a vicious cycle.

I sometimes wonder what I would be doing if I could stand up and walk around by myself. I think I might take a drive somewhere or maybe fold some clothes or do some of the chores that need to be done around the house. I can’t do any of those things right now and it frustrates me beyond belief.

I’ve been told that I’m bad at just relaxing and doing nothing. I know this is true. Doing nothing feels worse to me than just about anything else. Watching TV is what I do to pass time at night. Maybe it’s marking all those years and being so busy all the time. Or maybe I just don’t know how to relax. In any event it doesn’t help get through the day. I want to be someone who has the discipline to write because that’s what I really want to do with my time now. I can’t stop feeling pain and focusing on my symptoms.

So many people have told me they want to read the book I have to write. And I know this is true I know I have this inside me. There are many other things that are blocking my ability to get this done or to even get started. I sit in front of my computer, and I wiggle back and forth, and I can’t come up with the topic or where to start.

Today is a perfect example. I wasn’t able to go to the bathroom so now all I can think about is how I feel like I have to go, or I feel like I should try to go but that’s involved. It’s not like I can just stand up and go to the bathroom. I must get help to get on the lift and to get on the toilet. It’s a very involved process. If I could just do this myself just do it and be done with it. I can’t do that, so I have to wait. It’s difficult to force myself to wait. But that’s just what I must do.

I know the answer to the question already. And that answer is time. Time to get used to this new life that I have and I never asked for. Time to get used to something so new. That’s the advice I would give somebody else if they ever had to ask me what to do or how to handle this situation. I would tell them give yourself time. I have for some reason I can’t seem to give myself the same grace. I want answers now. Right now. But there are no answers. The answer is time.

I really hate that answer.