I have been sitting in my chair as I always do every single day but after the needed adjustments, I am baffled by witnessing progress in real time because the last chair I got less than four years ago, It had a different pelvis stabilizer. it’s become normal for me to refer to my seatbelt as that because that is the proper name for it.
I would say probably a little more than a year ago, I think that my Mom was backing my chair out of the bathroom before we began our routine and the pelvis stabilizer got caught up in the wheels. It burned parts of the strap so it really looked ghetto! In Addition to that, another time, the actual clasp of the seatbelt was run over and it broke. Both parts were able to fasten together still so my Mom would tie the end of the seatbelt to the clasp so it worked.
I told my Mom to mention that to the technician this morning. Rick worked on my chair today (I don’t know any of the technicians because I have never been there when my Mom has taken my chair. I think there are a whole lot of them there though, kind of like in the movie TheUpside) and he replaced one side of the pelvis stabilizer. No longer is it like a seatbelt in a car. it’s better than the million dollar idea I had for a better pelvis stabilizer. I think it’s crazy that I am witnessing progress in real time and even seeing changes between chairs! Imagine the progress that will be made by the time I get a new chair next July!:
My Mom clasped me in and I just moved The track until it was flat.
Well, the grade average for my weeklong chair sleeping has gone down and that it’s because of last night, I give myself a C-/D+. I said that to my Mom before she was finished getting me uncovered and getting my shoes on. She told me that based on all of the grading this week, this is a fail! I told her that there is NO other choice! Because at this point, there is NOT a choice.
I emailed Diane Thomson from RIM and it was a pretty long email. I reminded her about what Dave told me about sleeping in the chair and that that is where I am now. I explained my grading system to her and she’s pretty fast about responding. I didn’t email her until after the end of the day so hopefully tomorrow, when I wake up, there will be a response in my inbox.
I’ve told my Mom that we need to slow down with decision making regarding my sleeping arrangements because that is a big transition because I have been sleeping in a queen size bed for 20 years and I have not slept in a twin sized bed since I was a freshman in college at WMU. I just need time to get okay with this but then my Mom said to me that, my body might not last the time I am looking for. And that really scared me…
Sean has been telling me for years with a shake of his head and a smirk on his mouth that a.m., “Too much.” Usually, it’s in silly situations and I flash him a broad smile and tell him that, “I I am just enough!” that will get both of us to laugh. I thought about me telling Sean that I was just enough because of the events of this morning. I am not sure if I am enough for this.
Upon waking up this morning, I again had an unacceptable solid ‘C’ sleep. I can’t see a solution to the sleeping arrangement because this is where it has to be at this point. Let me explain this to you all:
I open my eyes and when I feel that it is time for me to get up I will ask/say, “Mom?” And I will either hear her voice or silence. Now that I am sleeping in my chair, it’s her voice most times. She walks in to my room, and she will need to peel my covers off of me. ALL of my covers! This is a slow process because I do have a VERY heavy comforter and my other blanket that I sleep with is large enough to cover a queen size bed with my sheet as well. When she is finished with that, I will lay my head down further in my chair So as she can remove the pillow that my feet rest on. Once she does that, she puts my shoes on. Once they are on, I adjust my chair so I’m leaning all the way forward so my Mom can pull the blanket that I wear around my neck and shoulders off.
NOW, putting my shoes on with my legs extended higher than my head first thing in the morning is difficult for me to handle! Waking up in the morning is a VERY slow process for me but adjusting my feet and my broken knee is a little bit taxing! And by a little, I mean A LOT!
After she is finished with this, I sit in my chair in a days for a while. Then, it’s time to wash my hands. But here’s the thing, my house was belt in 1951 and in 1951, disabled people did not on their own homes so the doorways are too narrow to allow my powered chair into. For now, handwashing for me is soapy washcloths and rinsing my hands with wet washcloths repeatedly until they feel clean. It’s not ideal but it works for us now.
This morning, as my Mom was putting soap on one of the washcloths, she said, “It’s too much.” I don’t think she was talking to me but I said to her, “I agree, but I don’t see another way right now.”
To keep by self from crying, I thought of me telling Sean that I’m just enough but I don’t think that applies in this situation if I’m being honest with myself…
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.
Well, the third night of sleeping in my power chair was nice and I completely knew it! Actually, I didn’t know it, I HOPED that it would be but I wasn’t positive because the first night I slept in my chair was comfortable but the second night was terrible!
The first night I slept in my chair, I had to remind my Mom a number of times throughout the day that that was going to happen. When it happened, she has decided to sleep in my bed to be available for me if I need her. The first night, she was extremely uncomfortable and she was stressing me out! I told her that it was bad juju for me to go to sleep with her negativity!
What really stunk about my second night in my chair was the fact that I was not comfortable and I had to move my chair to try to find my comfort zone! I barely found it at all throughout the whole night so I slept terribly! The fact that I was moving my wheelchair in the dark and silence of my bedroom with my mom sleeping next to me also woke her up so she did not sleep well as well.
it was terrible yesterday during the day because I was tired and my Mom was tired all day! My Mom kept asking me if I was going to sleep in my chair or in my bed because I did not sleep well my second night. I had to explain to her that sleeping in my bed is something in the past. It hurts too much for me to continue to sleep there. I still need to talk with, “The Powers that Be” to discuss me sleeping in my chair but that’s where I am now. i’m not even sure who those, “Powers” are exactly!
I really appreciate that I had a good night’s sleep last night and I was completely comfortable. My neck hurt this morning and I told my Mom and she looked kind of excited as if my neck was hurt because I was sleeping in my chair. I wonder how long I will have tell my Mom that it hurts too much because it does! This really upsets me even though this is my reality and this is the progression of my disease.
This morning when I awoke, I did not make the same mistake as yesterday where I tried to move and adjust my chair to be sitting up so my covers got all tangled up with my wheels. It was not an excellent way to wake up! Yesterday, I had to explain to my Mom that it is necessary for me to have such weighted blankets! The weight calms my body enough so I can sleep. I’ve had that comforter since we moved into our second department in 2006. I bought it from JCPenney and actually, my Mom had to pick it up for me when I was at work. It was on sale! It was on sale just for me because it’s my FAVORITE color! Aubergine!!!
I wonder what tonight will be like but unfortunately, there is no going back from here.
As I have written extensively about the change in my sleeping position, there is also a change in my Mom helping me in and out of bed. It is quite involved, now!!! And with that added involvement, it has also added groans on my part! My Mom finally got me up and seated just as I turned my head toward the living room to see Leia trading toward us! Her little ears were at attention! My Momj heard her feet and said that if she could go hands, then she could be of assistance. I told her that she is here for moral support. I told my Mom that Leia is our therapy dog!
I had a virtual doctor appointment today with my speech pathologist. She had to change our game plan because I was having a lot of difficulty speaking and I was not able to read from a children’s book. I was stressed out! It started last night and at the risk of having this blog post also being, “A downer,” here goes:
I was stressed out because as I had written before about a change in my sleeping position and the fact that I sleep like a vampire now. But what was most unsettling yesterday is the fact that I was wide awake . REM sleep hasn’t been a thing for me for at least a decade! My body cannot relax enough to allow sleep and I’m okay with that. It just really stunk yesterday that I was so awake and I thought of this video:
I remember seeing this video when I was a kid and I remember the guy laying on the bed and nodding his head to the music. Well, not really but I remember his head moving and I remember him talking during the video. Today, after my speech pathologist appointment, I watched the video again because it has been at least 30 years since I have seen it. It was just like I remembered it and I listened to the soldier talking. I watched the video three times. I cried all three times!!!
My situation was not caused by a landmine but it is similar. So much has been taken away from me already and I actually talked to God last night about how much worse it will get I really am trapped in myself now…
Okay, this happened a couple days ago and I think that I LOVE my Facebook family and friends for their reaction to it!!!:
I looked at it and I think it was I had shared posts with misinformation. Apparently, the change in the zodiac signs was false and Betty White had a quote after death but that was not hers. it only took a couple of days before I started to see the true colors from my Facebook family and friends! I am glad that they did not think this was a bad thing and the comments they left were hilarious! A former teacher of mine told me that I couldn’t always be good and a cousin of mine told me that, “It’s a Rios thing.”
My favorite comment came from a DC parent and she was Sean‘s shotput coach when he was in fourth grade! He just simply wrote: “#FreeJenRios.” I left the most to add this one but then the gifs started and they kept making me laugh!
I love this little kid too!
And this one coming from my aunt whom I used to spend weekends at her house with my cousin made me laugh lots!!!
It’s not like I was sharing State secrets or anything but whatever! I just realize that today is the last Sunday that I will be 39. Next weekend, I turn 40 years old!!!
I posted this picture on my blog post yesterday. I’m pretty sure that I was 28 years old. Furthermore, I think this was the concert when we saw Maroon 5, The Script, and Train. We went to a different show the following year and there we saw Gavin DeGraw, The Script, and Train. I love this picture!!!
I thought about this picture more so when I started completing a puzzle on my puzzle app last night. I had written a post about those maybe a couple weeks ago and because I was using my iPad to edit things, my lack of hand control and dexterity caused me to permanently delete it. I will add a similar post to that one I posted yesterday, today just because I want to hear that Carrie Underwood song!:
I have completed maybe five or six more puzzles but it takes a long time to scroll through all of my completed puzzles but I’m still doing it and it keeps me calm. I have completed 150+ puzzles by now.
I posted this picture of my cousinT, Shannon and me at the concert because as I was completing my puzzles last night, I did not hear a Carrie Underwood song after my obligatory Sara Bareilles song completed. I kind of liked that I heard it when I did but I wish I would have heard it before when I was younger. Now, as I am just about 40 years old, everything is already undone and I handle stuff on my own now!:
But I did not hear Carrie Underwood yesterday, I heard this song from The Script which is one of my faves and I saw them sing it live when we saw them in concert:
So, as I am completing puzzles, I do about two or three a night, the music kept playing and it went from a song from The Script to a song by Gavin DeGraw which I LOVE and lastly, I finished flossing my teeth to a Maroon 5 song. That further gave me ANOTHER reason to post that picture of my cousinT and me!!!
So, yesterday was the fifth time I have watched the Super Bowl halftime show and yes, I cried AGAIN! Yesterday, I wrote about it and I was in a different mindset and I was looking forward to watch the halftime show that I already knew what was going to happen. I have decided that my favorite part is when Dr. Dre is playing the piano and toward the end of his playing; he smiles. That smile kind of reminds me of my Dad because my Dad had similar lips to Dr. Dre. So as I was reading my blog post, I was thinking like this because I loved the halftime show!:
so, as I was writing about the halftime show, I had this song playing over and over again in my head. It didn’t fit with what I was writing so I couldn’t add it to my post but I figured if I added an addendum, then I can tell you all what I was thinking yesterday as I was writing. I think they performed this song when I saw them with my cousinT, Shannon Over a decade ago now:
