9/1
Okay, here goes another morning. It’s always a tricky time, making time for writing. I know how much it helps me, put all the ideas in place. It helps me so much. Especially when it comes to my legs! there’s so much changing down there, on the daily, it helps me make sense of it all when it’s usually so hard to in my own head.
Last night was really interesting because before I went to bed, my legs were not even remotely close to tingling. They were feeling more full than ever! I really liked this, and I hope this continues!
I’m always struggling to differentiate between tightness in my lower abdomen, and the urge to pee? Which is it? It messes with me so much. I’m pretty sure in the morning like this, it’s the need to pee, but it’s always interesting having to try and differentiate between them. It’s not always as easy as it looks!
Well, let’s take a moment and prove out which is which….
Well! My right leg is really feeling such significant feelings of proprioception! He’s feeling so much more today, feelings of fullness, and it’s really improving my sense of awareness and confidence in him! When I’m crawling on the floor, I’m noticing how much feeling thru my feet there is! And my legs aren’t flopping down! My left leg is still not orienting himself quite the same as my right, we will have to work on that!
Well, today turned out to be an interesting day. And when I say interesting, I mean horrific and terrible. I essentially have had the worst night. Turns out my stomach does not agree in any way shape or form, with twisted iced teas. I thought I was doing the right thing by asking for a drink without carbonation, to make sure I wouldn’t get all gassy, but boy was I wrong. This turned out to be one of the worst experiences on the toilet I’ve ever had. I didn’t get to bed until just after 2am. I spent the night once Callie and I got back battling the worst case of diarrhea I have ever had. Things are even more complicated for me these days, you know with a neurogenic bowel and all…. Turns out this was the night from Hell.
I am so glad that I had Callie here this whole time to save the day, I was weak, fatigued, shakey, and exhausted. There was a point this night when I was in the shower trying to clean myself up, and while I was under the hot water, I started to get goose bumps. Yeah, steamy hot shower, and my body is cold? Something isn’t right….
I really had a hard go at it, and it required me to get on and off the toilet too many times, in and out of the bed too many times, and in and out of the shower too many times for 2 in the morning…
It’s almost like Labor Day weekend is supposed to be filled with peaceful moments of relax, unwind, and out your feet up. This weekend seems to be really distant from that. I just have to be so careful about what I do. Who would have thought that I would have had such a violent reaction to some alcoholic teas? I sure didn’t. It’s really unfortunate that this had to happen.
Then, on top of it all, my legs spasmed while I was peeing, and squished the fill bag I use…… that’s right…. Pee all over me and the floor. Just what I wanted to have to deal with when we’re out visiting for the afternoon. Just so embarrassing. It’s awful. Not a great day. (To say the least)
9/2
So, it’s Labor Day and I’m laying on my back in my Astronaut Pants! The fateful night last night has ended. It would appear my body is getting back control of himself. Turns out I feel pretty dang helpless when things like last night are going on. There isn’t almost anything that I or someone else could do except try to help make me a little more comfortable. There was so much unpleasantness, that word hardly does it any justice.
9/3
I really had a tough bout of rest, last night. But I don’t feel completely unrested. I’m really off my schedule. This weekend really threw a wrench in my recovery, unfortunately holiday weekends seem to do that. Time to get back on track! But first, I need to deal with Jury Duty. Not fun. I was told there’s a potential I might not even be able to get around very well in the courtroom, so I’m hoping that means I can get excused? Let’s see, I’m going in first thing this morning.
I’m not waking up with the same enthusiasm I usually do. I need to get everything back on track. I’m frustrated. This weekend was a real damper to my spirits. I’m now wondering what all I can do to get things back on track?
I think calling up the doctor today to get the Botox setup for my hamstrings is in order. They are so gosh darn tight! I need them to relax! My legs really really want to be moving, and they are making for such a hard time!
It’s not easy when you have a million things going against you. There’s so many thoughts about how you can’t even get in and out of bed on your own, or your legs are too stiff to stay underneath you when you’re getting out of bed, and you almost fall down just trying to get into the chair. When the reason you’re getting out of the bed is because you have to pee so bad, and you’re too stiff because of that.
The feelings of malaise are real today. It’s hard. I’m on the floor, and usually this helps me feel a bit better cuz I’m moving around, but I’m getting really tired of all the small little crappy things that keep adding up and up. It’s really nice too, when the small inconveniences in my life are rather large. So my cup of inconveniences fills up really fast. You know, your max allowable inconveniences you’re able to handle within any given day? I’m pretty sure we all have that. I guess my cup gets used quite a bit.
I’m really having a hard time and I feel it. I do think that the amount I write does help with this. I still haven’t figured out fully why this is. But it’s been interesting to think about. It’s happening in my brain, which is my central nervous system, which my spinal cord is as well. So, it’s related at least in that sense.
Glad I made it to the floor. It’s always the best way to loosen me up.
I’m at the gym now, and doing back exercises help me so much. My back get so tight so quick. Every little change in my body seems to also have something to say in my back.
9/4
This was one of my most busy days I have had yet to date. Wake up at 6, work, therapy, go to a concert, and get home at 12:30. This was an experience.
I woke up in the morning with the tingly-est legs I have had in 9 months, I had said. Honestly it could have even been before that. I really was in a lot of discomfort, I was not feeling well. The day progressed, and I kept moving and pushing myself, from the next task to the next task. I had a lot to do. I haven’t had any free time, I was preoccupied all day. But I am glad I did it! I’m glad I can still live a life to the fullest, and I’m trying to do more every day.
9/5
Therapy today was amazing! I used the stationary bike with Ashley, and I was actually pushing!!!
Exhausted though, just very tired!
9/6
Laura and Paul’s birthday today!!!
Work, and then an interesting one, I went in to help out with a class! I was their test subject/ guinea pig. It was interesting getting to hear what PT’s are learning about, and then also, getting to help out in a lab! It is a weird position to be in, but I’m still glad to help!
9/7
Okay, so. I woke up this morning with a really interesting set of feelings in my legs. One, I feel like I was noticing the warmth in my legs. The tingling changes when I am warm or cold, and I realized this yesterday when I was getting dressed. Turns out I tingle a lot more when I’m cold, and it slowly decreases when I finally am clothed and am warming up!
I feel so many interesting feelings right now, starting at my hips and abdomen, how they are actually contracting and moving, but oh so tight! I can feel the pressure in my lowest back/ butt where the end of the rod is, it’s really not always pleasant, but I’m working on getting myself to move with or without him, he’s going to cooperate. My middle glutes have really been firing more, and what’s interesting, is how much my hip flexors are finally relaxing! I was noticing that during the standing frame and this past night, and I was able to get up in the standing frame without my hip flexors spasming at all! It was crazy! I was breathing in during the contractions, and I know that seems to be opposite from the norm of exhaling during the push, it felt like finally I was getting more air at the time I needed, so I need to play around with this!
My quads are feeling very engaged! They are increasing my proprioception on my knees as well, all the movements I am doing are much more noticeable in my joints and knees, it’s been very noticeable and I’m liking having increased stability with each passing day.
Now I’m thinking about my inner knees, outer knees being very full, and my shins being engaged! I do think that the tingling in my feet and legs have been on a mission. Like I told my therapists, “whenever I experience a lot of neuropathic pain and discomfort, I know my body is going through a change, I just don’t know what.” I think this is very true, because I know that this past week, amongst all the headaches, frustrations, and discomfort, my legs are making some gains. I just need to be mindful of how they are feeling, and not over do it. Today is going to be a much needed rest day!
Day well spent visiting with everyone! But boy, do these days get me tight! I am glad I can at least get to bed tired. I hope I can move around more tomorrow!
The Astronaut on Earth 
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