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.
So, my Mom brought my power chair back to my house and she took Leia out before transferring me from my manual chair to my power chair. Leia tried to get in on the hug that my Mom and I were sharing to transfer me and my Mom got a little irritated and I reminded her that she loves us and wants to get on and that hug even though it’s just a transfer!
As soon as I got in my power chair and was adjusted to be sitting in it fully. I Smiled to myself. It was small and my mom asked how it was and I slowly nodded once and said with my eyes closing, “I can feel it!” And as I sat there further, tears started streaming down my face. That seems to be happening to me a lot now! I don’t fight them anymore and they just fall. It’s good that I don’t wear make up because otherwise, I would have streaks on my face.
My Mom left to do some errands before she takes the van back to Creative Mobility. I am sitting here in my power chair and a leg rest that we’re adjusted feel really good and I can’t believe that I dealt with them NOT feeling good for so long!
So, I’m sitting here listening to music and overwhelmed and silent tears are constantly streaming down my face! Not that I’m bragging or anything but there is a huge difference between a power chair cushion and a manual chair cushion. If we are talking price, it’s a difference of $40,000. My body can feel that difference now as I am so more comfortable And I feel overwhelmed and the tears just silently stream down my face.
So, I give my sleep last night a ‘B.’ I did have to move my chair probably four or five a.m. because my ankles were hurting. My Mom got me up earlier because she took my power chair to NSM again.
My chair, even though STILL nameless, will be four in July. Four was my favorite age when Sean was growing up because I could understand everything he was saying and he asked crazy questions because he did not know! I remember laughing about it all the time!
Last night, I texted my Mom a list of all the things wrong with my chair to tell the technician once she got to NSM. I was a bit concerned because I was told that I get a new chair every five years but since my chair is only four, I would have to pay for any things that I needed. I thought!
I have been on disability for five years and I am on both Medicaid and Medicare because I am physically disabled. It has DEFINITELY been complicated to say the least! I get a spend down each year which means that I need to pay out-of-pocket for things until I meet a certain amount that I will pay for before they cover things. Last year, I met my spend down on December 28.
So I was concerned about how much it was going to cost but it’s gotten to a point where I need to get things out of necessity not because I want them. As I was waiting for my Mom to call me back about what was going on with my chair, I watched GMFB clips on Twitter because I can’t wake up anymore to watch it live and to Tweet at them which makes me sad.
I saw this one and I’m not even sure who the prospect is but his answer made me laugh out loud because Sean is ALSO an early 2000‘s kid and we did jam to this song often together in my car!!! 😂😂😂
So, my Mom called me back and we had seven different things they needed to adjust/order. They adjusted everything and ordered the cushions that I needed replaced. My Mom gave me the grand total that we owed today.
Last night was my 9th night sleeping in my wheelchair. I was concerned about my low grade point average of the past eight days but I thought about how it has played out and I made a readjustment. I did not raise my legs as high nor did they lower my head as low as I did before. So, I am happy to say that my grade for last night is an A-!!!
And the only reason it is an A- it’s because my right knee was throbbing all night long with the precipitation! I woke up to an email response from Diane and she does NOT suggest that might sleep in my chair but she said that people do it and she gave me other options for me in the future!
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…
This morning I awoke and my left shoulder was aching. I had only moved my chair one time throughout the night and again that was in the early hours of the morning. So, I guess that that the grade I will give my sleep is still a solid ‘C’ Because I am really not liking The heaviness I am feeling in my eyes throughout the day. I’m not sleepy per se but I’m NOT rested. If that makes any sense. It doesn’t make me feel comfortable in addition to the fact that my left shoulder hurt this morning and it has hurt a couple other days.
I have been sleeping in my chair for five days so far, tonight will be my sixth and it’s averaging out to a solid ‘C’ which if I am being honest with myself, is completely unacceptable! This from the woman who got a B+ in grad school in her 20s and still remembers that when I am 40! But I also got an A+ that same semester so really in my transcripts, it counts as an A-. but, in all actuality and with all jokes aside, even though I think it’s unacceptable that I have to sleep in my chair and only getting a lousy ‘C’ for my sleeping performance, The reality is it HAS TO BE acceptable because that’s the way it is now regardless of what I want.
I woke up this morning and I have decided that my sleep last night was a solid ‘C.’ I awoke to silence but I did not feel rested this morning. It’s really about noon when I open my eyes now. But my sleep was a ‘C’ last night because in the early hours of the morning because it wasn’t totally dark but was starting to get a little bit lighter outside, my body didn’t feel good.
I wasn’t going to wake my Mom up again so I decided to do it on my own. I may have had MS for 21+ years but I’m still pretty determined! I was able to lower the legs of my chair and I thought about the rules of going, “Back to Baseline” so I made sure to make sure each movement I made from my chair was complete. I went all the way down so I was sitting normally and then I got tired and needed to rest for a while and then hi I was able to raise the back and my legs how I needed it to feel comfortable. I had to do that a few times last night.
It what silent in the house when my eyes opened but I did not move. I called to my Mom and she was sitting on the couch in the living room and I told her before I was awake for the day, “My sleep was a solid C. I said that and then I was able to drift off for little while longer. Because last night was not terrible and it was not good, that’s why I gave it a letter grade of a ‘C.’ I thought of my time as an undergrad when I said that my sleep was a solid, ‘C’ and I thought specifically of an economics class that I had one summer session. I am an English teacher and I became a Reading Specialist. Nowhere in there is there any economics whatsoever!
I remember that I had to take that math class because I needed mathematics credits. this particular economics class satisfied the mathematics credits that I needed. As someone who is English minded, this particular economics class was definitely NOT a cakewalk! But I took the class knowing that I just needed a C or better for it to count toward my degree. A couple weeks into the class it was obvious that I was NOT going to get an ‘A’ but I could get just enough done. I remember the day the professor came up to me after class one day. He asked me what my major was and when I told him secondary education majoring in English. I quickly followed with, “I just need a ‘C’ or better for it to count.” I saw his face change and kind of soften and he said, “Oh, then you’re fine!”
I’ve thought about that professor today when I think about my sleep because it’s a \solid ’C’. I don’t feel rested completely but I am not in excruciating pain either and besides, I haven’t felt that way in at least a decade anyway…
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.
