They play this song when I saw them live probably 18 years ago? It was old when they played it and it was a throwback that he wondered who knew. I knew, Pat! Of course, I knew!!!
Who were those kids listening to them sing so long ago?! It’s me and my cousinT, Shannon!:
We went to get my bed on Opening Day. I saw this picture from five years ago in my Facebook memories and I screenshot it to write about it later but you know how it is for me after I leave my house… as it gets further and further away from Opening Day, that picture is irrelevant but not if I talk about baseball!:
I love that picture! Sean keeps telling me that I have turned my back on the Detroit Lions but I told him that I have stayed true to my heart and have followed my man to the Los Angeles Rams. But seriously, I am not so much a baseball fan. In fact, I haven’t really ever been a baseball fan. I have been to a total of two professional baseball games! The first one was in Tiger Stadium and I was pregnant. The second baseball game I went to was just after Comerica Park opened. And it was so sad to learn in its first season that it is completely NOT handicapped accessible! I’m sure that I have written about this event before but I will talk about it again here.
But first let me tell you about my first time going to a baseball game. which I am sure that I have written about this before somewhere in the archives it’s probably in there but that is where my mind is right now. I was newly pregnant and no one knew that I was. Well, I guess a few people. We go to the game and I was so excited to get a corn dog! It was the first time I was at a baseball game, a professional baseball game and I wanted to savor the ambience! I don’t know who they were playing or even who won but I do know that I wanted to buy a box of cracker jacks! If I personally know you, I know you have heard this story, but I was able to buy MYSELF cracker jacks. I didn’t even finish them.
So that was the first time I want to see the Tigers play. So, fast forward a few years and Comerica Park was just built everyone would think that it was so new construction that it would be handicapped accessible but I found out when I went there on my crutches that it was NOT! The guy I went to the game with had front row, left field tickets. I could’ve caught foul balls IF we could’ve gotten down there! I was on crutches then and there was no way for me to get down to our seats. That really bummed me out but I did not cry because my disease had not progressed that far yet. Thinking about it now, it almost makes me want to cry! We didn’t stay for the end of the game, I think we left in the seventh inning because we sat behind Home plate.
So those are my only two experiences going to watch a baseball game. Thanking about it in retrospect, just like this song, “… I don’t care if we ever come back” but then there is the time that the Detroit Tigers made it into the playoffs when Sean was in middle school. I will never forget that day! We were watching the game and the dryer buzzed and I told Sean to grab the clothes out of the dryer and put them on the couch so I can fold them while we watched the game. He was irritated going to get them and told me to tell him what happens. He left just as a batter stepped into the box. when he came back with an armful of clothes and put them on the couch, he asked me what happened and I looked at him straight faced and said, “Nothing. absolutely nothing!” The pitcher hadn’t even pitched anything! It was a short-lived playoff run but that was years ago.
But now, with me and my disease progression, I will NOT attend a live baseball game ever again. But that really doesn’t matter because i’m not such a baseball fan anyway…
I just want to start this blog post off by saying EMPHATICALLY that I can do ANYTHING for three days!!! This is not me saying anything about dealing with having had MS for 21+ years but I think the fact that I can do that, or, I have done that, makes dealing with sleeping in my power chair for three more days before my bed comes a little bit more tolerable.
I was thinking for a long time about how to write this blog post about my sleeping situation last night and I kept thinking that I was going to name it, “A teeter-totter” because that is this song popped into my head and this is exactly what I did last night!:
Let me ‘Splain ya: I originally got my power chair because my knee was injured while I was seated in my manual chair. My meniscus was torn. Because it takes so long for the body to heal after surgery (I had a second knee surgery on the SAME knee) when you have MS, my wheelchair tech suggested that I get a power chair so I can keep my legs elevated and extended at all times. When my knees are bent at 90°, it hurts! I can adjust my wheelchair to have my legs elevated all day long and that helps. But now, let’s think about a body that has had MS for 21+ years…
I can no longer sleep in my bed. It hurts too badly when my Mom, “Yanks me” out of bed. That’s how she explained it to KJ at the furniture store. My NEW bed is arriving on Friday. So last night, I was a teeter totter because I would lay back until my ankles start to hurt and then I would adjust my chair to the sitting position until my knee started hurting. Then I would adjust it back. I think I did that five or six times before I found a spot where it was like Carrie says, “Floating side-by-side.”
I love that song! It reminds me of our second apartment! I was more able-bodied back then and could still drive. I have listened to this song twice as I was gathering the images to post here on my blog. These are the words that made me think of this song and I always love a reason to post songs that I dig!:
Maybe I should listen to this album tonight when I am puzzlin’…
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 The Upside) 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…