Today has been a mixed day for me.
I didn’t sleep brilliantly last night as my lower back was agony so I was tired first thing.
Had physio at 10 and it was a tough session.
I started off with a bit of walking with my frame. I’m really struggling with my right leg as my toes won’t stop curling under. I can’t get my feet to do anything if u cannot see them and trying to walk with a frame and look where I’m going is so tough.
I then attempted some side stepping against the work top. I really struggle with this as I have to try and support myself on flat hands. I ended up leaning on my fore arms to allow some weight to come off of my feet. I managed 2 steps each way.
Then the physio asked if I’d done any free standing (not holding on to anything) and I said no.
I gave it a damp good go though.
I really had to believe in myself and my legs. It was so hard trying to relax my shoulders and lock my legs in a straight position. I must have looked ridiculous. My legs were shaking like mad and I was swaying alk over the place before I’d even taken my hands off the work top.
I managed to take my right hand off and place it by my side and slowly lifted my left hand up.
I was standing on my own for the first time!! My legs and body were shaking like crazy and I kept saying like a weeble bug I managed it for a whole 50 seconds!!! Yep me, who has no feeling in my trunk and legs, managed to stand on my own (with the physio just using her fingers to steady me.
After all of that I then did a long walk of about 8 m. I am trying a new technique of slowing my breathing and trying to relax everything so that my toes can move with less effort. It was exhausting. I tried so hard I was in agony but I did it.
Once I’d finished I went back to my room and dosed up on pain killers and watched TV.
It was while I was watching TV that an advert for Always came on and we’re talking about weak bladders. I then remembered that tomorrow they are taking out my catheter and trying to see what happens.
I ended up all panicky and stressed. I really cannot handle the humiliation of wetting myself and someone having to clean mw up. I sometimes think that doctors etc forget that we are going through hell and back emotionally to get ourselves as well as possible. I think they forget to put themselves in our shoes and see how we feel.
Add into that the doctor starting me on antibiotics as they think that the rashes on my legs aren’t an allergic reaction but possibly cellulitis. My legs look awful, in places they look burned.
I really hope it won’t leave any more scars on my legs. Got enough from my leg surgeries years ago.
Really missing the boys terribly today as well. Just wish I could snuggle up with them. Yesterday Lewis didn’t want me to help him and kept looking to daddy when wanted his programme changing. It made me feel so very useless.
This evening I’ve been talking to a young patient whose girlfriend has said she needs space and time out. Poor lad is devastated. He’s come so far with his rehabilitation and can’t see how to move forward. Reminds me of being a teenager again.
Also spent a lot of time with one of the elderly ladies trying to get her to take her meds. It’s no mean feat when you are faced with a strong willed person who is confused at times.
This place really is amazing. Everyone looks out for each other and helps each other out.
We’re all here to get well and that comes with support from those in a similar predicament.
Oh well off to watch TV and try and forget about tomorrow
TTFN
SN Mum
Posted from WordPress for Android
Transverse Myelitis & Me, With A New Addition! 