May 26th – June 1st 2024: “One Day, One Day At a Time”

5/26

We made it to lake Geneva! This is a super cool little hotel! I’m glad we made it! It was really nice to be able to just relax down by the marina and just slow down and not have to do anything for once. It doesn’t happen very often.

We had a couple minor hiccups, there was a step to get into the room…. That isn’t ideal. And the bed is super high…. Again not great. But we can do it! We are and we are trying!

Dinner was super tasty! I’m glad that Callie got to choose this place! I had a really good time here, and the food was great!

One of the problems this night is that I am seeing more and more the problems that I have to deal with. And the more I have to deal with, the more difficult it becomes. When I can’t relax and lay down and get comfortable in bed, this is when things really get difficult for me. I have a really hard time trying to manage all of the different sensations and tightness at times like this, wish me luck I’m going to try to get some sleep. I’m not having a good feeling about this.

5/27

Well, my legs are really feeling it. This bed was really hard (for me) and my legs are not having a good time with this. I can tell. It’s not what I’m used to. My body is so sensitive to change.

Okay, well. This day has gone from a positive outset, where I was really fighting and trying to be positive, even though my legs were vigilantly trying to never let me fall asleep, and took a super steep dive for the worst.

I started to go to the bathroom in my “travel” urinal, and it started to really fill up….. like close to 1L of fill up….. and then the worst thing ever could have happened… my legs spasmed, they squeeze the travel bag I use as a urinal, and then I created a the biggest geyser of pee that I had ever seen. And it ended up all over my lap, legs, wheelchair, and floor in the blink of an eye. I was devastated.

This has to have been one of the worst things that could have happened to me, and one of the worst times ever. I cried. I couldn’t stop it. I fell apart and didn’t know what to do. This felt like one of the most humiliating acts I could have done, at one of the worst times ever. And all I could do at this moment, was turn and see Callie being there for me. She grabbed my shoulders, held me, and told me, “It’s okay”.

This had to have been one of my lowest moments I’ve had in such a long time. It was so hard to have to sit there, covered in urine, and try to hold it together. It was so hard, to move, to get myself to actually clean myself up, everything. The shower I had to subsequently take was hard to do.

The whole shower experience was not ideal either. It was a foreign shower, with a lackluster chair that was really wobbly, and made me feel like I was going to fall at any moment. It was a hard, hard shower to take.

After I took the shower though, I was able to start to slowly start feeling better. I needed that. I really did. For so many reasons. And this whole time, I had Callie right by my side, helping me, calming me, and reassuring me that it wasn’t my fault. As much as I thought that it was, and wanted to try to get my head out of this space, I needed to just quiet my voice, relax, and just slow down.

It turned out after we got some Burger King to have started to become an okay day. We smiled at each other, we laughed, we both said we hope we can look back at this day and moments and learn from it all and smile. I just can’t believe this all happened, and I can’t be more grateful to have Callie by my side through all of this.

I drove us back to Milwaukee, and I drove all backroads back there. It was fun, I never get to see the countryside of the Midwest these days, and I enjoy that. It was relaxing to be able to take a nice hour drive somewhere for once.

5/28

So, it’s interesting how things go when you’re working on things alone. When you’re afraid, and when your mind has a goal in mind. It’s crazy. Right now, I am on the floor, and it took me basically everything that I had to be able to get into a long sit, and now I’m sitting with my back against the wedge pillow. It always feels like it takes me forever in these moments, because it’s very small movements to get to where I want and need to be.

I had tried to get myself up from the position I was in lying on the floor, and I couldn’t. My hand kept slipping, and I had no chance at all to get my other hand back. To have such bodily limitations is a really interesting mind game, because simultaneously I know and want to do something, but I think it might also have to look completely different. I won’t ever tell myself that I can’t do something, because that’s only going to stop me from trying.

It takes alot out of me, and it takes a lot of mental effort to do these things. Not only that mental effort, but the physical effort is high. Let’s see if I can get my shoes off and try to do a little crawl for a bit. Try and just do something. I ended up taking a really long nap today, and I’m not sure where they come from sometimes. Its frustrating. I can feel that inner toddler in me needing to get up and move.

It’s an interesting dilemma that I face. Being so physically tired in these moments, but with limited options to be able to get myself to move. One day, one day at a time.

5/29

So it’s really interesting, how the feelings in my morning’s progress. I’m not in pain when I wake, but definitely have had a very interesting bout of feelings when I am getting up! My abdomen is really really feeling so different! Getting in the standing frame, eating up there, really helps me get ready for the day.

I forgot to drink any water when I woke up or before I got in the shower, and then proceeded to forget until about 9:30am, and my body is feeling it, forsure. It’s also interesting how I am able to trust my right side so much more, instead of being able to hold myself up on my left.

It’s really interesting how my right leg takes a lot more of my weight when I’m standing too! I’ll have to work on my left side, he definitely needs some help!

5/30

Okay, so when I was peeing, I was feeling a huge shift and change in the sensation in my right foot! As I was talking to Callie, it was actively changing!

So I went to the gym twice today! I’ve been meaning to get to the gym and do some cardio, and Im glad that I still was able to work the rest of my body out too! I need to work on not getting tired after lunch. I don’t like it because I want to just go walk and run around, and obviously I can’t do that quite like how I want to right now, but I gotta do something!

5/31

So those sweet potatoes made things awfully loose…. I have never went to therapy and had an accident before?! I don’t know if this is a good or bad thing, but my therapist Joni had said it’s never a bad thing if things are moving more?!

Made it to the gym and hit the heavy bag! I really like this, I’m able to string together 30min of cardio, and I don’t know why, but I don’t need a break, and I don’t break a sweat? Maybe I can pick it up a bit, but my heart rate was maintained at 153bpm, and reached a max of 179bpm, so I guess that wasn’t too bad? I will keep this up, I am feeling so good doing this! I just want to get all of my health and fitness back. One day at a time.

Wow, 5 pick-ups in 5 minutes… interesting observations about someone on their work computer and picking up their phone. Makes you think about that one? Just silly thoughts I have on a day I’m working to just make it through the day. Trying to make sure I don’t get too sleepy, and observing all the happenings in my area!

Made it to the gym again with Callie! I am glad I am feeling so much better in my back and chest and arms! I can really feel my legs engaging and helping me throughout my exercises! I need to make sure I keep up with my routine of working out, this helps me out in so many ways!

6/1

Okay, so my glutes and hamstrings are firing! Quite a bit! I’m laying in bed right now, and really feeling them being engaged with myself! I had a hard time getting up and out of the bed and into the chair this morning, because my glutes were trying to contract, and my hamstrings were doing this to a lesser degree?! My hamstrings are getting less tight, but still very tight. I seem to always attribute my difficulties to hamstring tightness….. I wonder why…

I was thinking about that this morning! I really want to get myself up in a tall kneel and try to do some of the “climb cruising” that I’ve been talking about doing now for the past week! It’s crazy how trying to get 2 adults schedules to line up is actually quite difficult! Not going to lie.

So the feelings I’m having are most definitely changing day by day. And I’m really glad that I got to do some tall kneeling exercises during OT yesterday!

Also, I had a thought….. maybe I can get Callie’s help to use the Theragun on my posterior chain. Starting from my low back, glutes, and hamstrings? This could help loosen up and start getting them to engage more, just like when you did this on your upper back and mid back? It really helps with the tightness!

So the “climb crawling” I really want to try! I can feel how based off today, my legs could really use some exercise out of the chair and this I feel would be the perfect transition to getting my leg forward and pulling myself up!

My bladder and bowel have been getting much more tame with the sensations! I can now not only feel them, but it’s less of a significant pain, and more just of needing to pee! And you know……

So I want to try to leverage the strength and muscle activation that I am getting, so this is really important for my next steps! Quite literally!

Wow, it’s really hard seeing folks on the television sometimes like this. That was hard. I really do sometimes seem to have triggers that I am working through, even to this day.