Neuropathy Showdown - Week 2

Occupational/Physiotherapy - Appointment 3: (June 6, 2016.)

I am beyond amazed at how quickly my body exhausts! Like, seriously and sadly ahhhhmazed!!!

NuSteppin' it back to healthy!

The first thing I worked on at therapy today was the NuStep machine; it kind of felt like using an elliptical trainer but sitting instead of standing. I know it looks easy but it was actually really hard for me. My legs were easier to control on the machine than when I am standing so I felt pretty good about the eight minutes of continuous work I was able to power through. But, boy, oh boy, was I a wobbly mess when I was done.

Once I had finished my time on the NuStep it was time for my uberly dreaded meeting with the Occupational Therapist about the equally uberly dreaded walker of my (hopefully short) future... I say 'hopefully short future' because I either want to only need the walker for a very short time or I want to not have to be alive for more than a short time in a case where the walker ends up to be a part of my forever future. I am absolutely NOT suicidal and I would never, EVER, put my mother or anyone else in my family through something like that, but, I sure wouldn't feel guilty hoping for a walker-free existance to come even in such final form. It also doesn't help with just having learned how embarrassed my husband is at the thought of me with a walker; he was with me at my last appointment and seemed fine in knowing it was coming this week but when he picked me up from therapy today and I told him the walker had been ordered... well, his replay was this..... "I can't see you using it though, do you?? I mean, when we go out in PUBLIC are you really going to want to take it with us? Do you see yourself being seen... in public with a walker?? I mean, what, are you actually gonna bring it out to camp with.....?" He stopped then, when I started to cry.

I know it's embarrassing that I need a walker and I feel awful, like I am moving backwards right now instead of forward. I was so happy when I had graduated from wheelchair to walker and then when I could manage holding on to walls and furniture I was over the moon because I was done with the walker... and now it just really sucks that the walker is coming back into my life. Of course I don't want it, of course I don't want to be seen in public... and especially more so now that I know someone else will be embarrassed because of me and it won't be just my own mortification I am now responsible for. It all just sucks so bad and sometimes I just hate everything.

Anyhow, after the awful walker business was taken care of, I was off to begin my physio for the day... and talk about TIRING!!! This is what we worked on today:

- reviewed and modified home exercises to help force my weakest (right) side to start taking on a little more initiative

- added new exercises to start working on helping control both of my legs

- tried a weight belt to help me with gaining stability and surprisingly I felt as secure as I felt ridiculous in using it

The goal for wearing the weights is to help my body re-learn to control movement and heal from the
ataxia that has, for some reason, decided to set in on me. As time goes on with my therapy, the hope
is that we will take weights off as my muscles gain strength and my nerves gain control. I hope that makes at least a little sense... it's how I understood what was explained to me, anyhow. Learning to walk again has taken a toll and in compensating for my legs not working, my body is paying a horrendously humiliating price.

I was wobbly, shaky and ready to just curl up and sleep when I finally arrived back home and although I feel guilty when I need to rest during the day... I did it anyway. My body needs the rest right now, as much as it needs to work; right now it seems to be that I have a long recovery period for a shorter exercise period but I know in time it will change to the other way around. I just have to keep believing in myself...


Physiotherapy - Appointment 4: (June 10, 2016.)

Today was a better day, quiet with only two other patients in the program room so I was able to relax my emotions a little as I worked to help my body heal. I get so nervous when too many people are nearby and though I know it's ridiculous, I don't know how to stop the nerves from overtaking me. It's just so embarrassing, this whole ordeal has made me so aware of my faults since the Peripheral Neuropathy hit and I am not so happy with that fact. I want to go back to just being me, the one who was happy and confident... and active. I don't know how to live in this inactive shell I've been forced into. Learning to walk again is no picnic... and oh, how I love picnics!!!

Anyhow, back to therapy in the gratefully quiet therapy room today... My physio therapist had put together a booklet of home exercises for me to do and we had a lot to do in going through each one. We did a trial of each exercise to make certain that I completely understood how to safely do each movement and that I was capable of doing each one safely unassisted. We did have to modify a few of the exercises but I left todays session feeling as confident as I did exhausted. My legs are only capable of controlling tiny movements right now and those tiny movements are harder than anything else I've ever done but I am already seeing changes in just my first two weeks of physical therapy. It's been an emotionally draining time, a physically draining time but it's also opening up a whole new world of what's still possible for me. I felt really proud of my body for the little it was capable of doing today and I feel hopeful for my body in the strength the tiny cababilities are leading up to. Greatness is on the horizon!

My legs learning to control and strengthen in movement is hard beyond what I've ever known hard to mean but it's also already becoming worthwhile. I am feeling pain and I am GRATEFUL for this to be true. For over a year I had no feeling and now I do, the nerves are healing and my legs don't feel like dental freezing anymore; I can feel touch on my skin and I can feel aching in my newly-again working muscles so I know I'm not crazy in my belief that I really WILL fully regrain my strength and mobility. After my exercises I was extra faltery-wobbily but that's okay, too... I just have to keep telling myself that re-learning doesn't happen overnight and I just have to have a little more patience especially since my nerves are also still healing; I can feel touch and pain but my temperature sensors (for lack of proper medical terminology) are still not fully back so though I can now tell when something touches my legs, I can't tell whether it is something hot or somthing cold. I still don't have complete feeling back in my feet so that also makes walking outside even trickier because when I'm wearing shoes I can't feel when my feet touch the ground and I can't safely maneuver terrain like I used to. It'll come back eventually, I know it will. Which brings me to the suckie part of the day..... Today, I got my new walker. I hate it. Was it easier to maneuver my way from the building to the car? Yes. Did I feel safer walking both trapped and supported with it? Yes. Did it make me feel humiliated and like I wanted to cry? Yes... I hate the walker! I feel like I am giving in with the walker, like I am accepting that I can't walk on my own. Of course, I know I can't yet walk on my own yet but knowing and admitting are two very different things.