OKay, so I guess that there is a learning curve when it comes to sleeping in your power chair. I have been living my life in this chair for just about four years. It will be four years in July. Operating this chair feels like an extension of my own body. My Mom will marvel at how I can cut it so closely to places I’m trying to get to. I never wanted this power chair but I’m grateful that I have it now because it has changed to me NOT being able to transfer to my bed at night to sleep. It hurts too badly! Let me refresh your memory about what my bed used to look like and why I loved it so much:
I bought this bedroom set in August of 2006. And the only reason I know that is because it was my second year teaching and I had just moved into our second apartment (a two bedroom) so I would have my own room. I needed furniture to furnish that room that I didn’t have before. It was only my second year teaching and Sean was still so young. During my prep hour, I printed up pictures of this bedroom set and I placed them on the table to see how I liked them. This particular set was $6000 and definitely way out of my price range but I liked it just the same! I love black wood and I thought that would go well with our new apartment because I already had blackwood with my living room furniture.
I remember showing the pictures to my colleagues and asking them if they wanted to see my bedroom set. It was only after they complimented me on it that I told them that is way too expensive for me and I don’t own it. But then, my Mom and I went to Art Van again to try to decide on a more affordable bedroom set. I needed bedroom furniture! But when we got to the showroom, this bedroom set was over half off. I want to say it was like 65% off or some thing so that made it COMPLETELY in my price range!
I remember when we moved into our second apartment and my brother, Jimmy, came over to be at my apartment when the movers came to bring the furniture. They called me before they got into my apartment complex and I told them how to get to my apartment and I opened the door wall to my bedroom so they could put the furniture directly into my room. I moved into our second apartment on August 1 but I don’t think that my bedroom set arrived until a couple days later. I absolutely fell in love with this bedroom set and had visions of willing it to my granddaughter in the future!
However, my MS diagnosis has some thing else to say about that because I had to sell this bedroom set a few years ago now on Letgo because I could no longer get into the bed because it was so high. That was a tough thing to deal with more dreams that I know will never come to fruition but I like that I took pictures of the set before I sold it because now I have a picture of my favorite color that is the comforter. My Mom does not like it and she says that it is too heavy but then I told her that the heaviness calms my body down so I can sleep.
But now, my disease has progressed so much that I am forced to sleep in my power chair. This is where I found out that the learning curve is longer than I expected it to be! The first night that I slept in my chair, my Mom was not at all convinced that is what I should do! As I told her how to arrange me before I had her turn the light out, she was stressing me out and I told her that it was, “Really bad juju before I went to bed!” She said nothing more and I was able to fall asleep and stay sleeping all night because the conversation we had before I tried to fall asleep. So I am thinking that it’s a piece of cake to sleep in my chair because I was super comfortable all night!
But, that first night, we figured out a few things! I have only taking naps in my power chair which were really comfortable but I did not think about the fact that my shoulders and the back of my neck are NNOT covered by my covers on top of me. So I had to move my shoulders a lot my second night because they were freezing! In addition to that, we did not plug in my chair the second night because I didn’t want to be tethered to it. I change the positions of my chair constantly and I did not think anything of me doing that while I slept. However, that really didn’t work out very well at all because I cannot get comfortable and my chair is loud in the darkness and silence of my bedroom so my Mom, (who sleeps in my bed) Heard me moving my chair all night!
So, we put our heads together, and figured out that if I used a blanket that my friend got me for Christmas a couple years ago that I could put that around my neck and it would keep my shoulders warm and that’s what we did a night two:
So here is the deal:
Night #1 👍🏽
Night 2: 👎🏽
Night #3: 👍🏽
Night 4:👎🏽
So, last night was not a good night at all! It is my own fault! It was a rookie mistake! What I figured out last night is that I need to adjust myself just so so that I am comfortable enough to sleep throughout the night. If a move my chair during the night, that puts my whole body‘s comfort balance off kilter and it’s terrible. Last night? that happened, my right leg was hurting a little bit so I adjusted the foot pedals. That did NOT feel good at all! I called to my Mom to help adjust my foot because I couldn’t reach it and all she said to me was that she had just fallen asleep and she adjusted my foot and went back to sleep.
Well, that made me feel terrible! As I lay there in the dark with my ankles still hurting a little bit, I made an executive decision! I will do this by myself! I am smart! I have 2 degrees! I will figure this out! But the one thing that I did not think about last night was the disqualifying factor for all of these facts. I have MS. I have had MS for over 21 years!
So, I adjusted my chair, “Back to baseline” meaning that I needed to turn my joystick on which took a long time because my cover is super heavy and took like 15 minutes just to move it. when I did finally move it, I put it all the way as low as it could go and I sat up like I was sitting in the chair but then I could reset and redo it which I did so I was able to get a few more hours of sleep. My ankles hurt this morning! It was a rookie mistake! Hopefully, I don’t do it tonight because even though my Mom doesn’t get it, there is no going back into sleeping in my bed. Not anymore.