Transverse Myelitis & Me, With A New Addition!

Do you often stop to think about the what ifs in your life?

I know everyone has those moments where you wonder about how life could have been so different if you’d have done this or that.

I’ve been sat here today between sessions and meal times thinking about how my life has changed since January and if there was anything in the time preceding my hospital admission that would make life any different.

I’m pretty sure nothing I did in the lead up to Jan 2nd would have made the slightest difference but it doesn’t stop you wondering.

I did this kind of thinking when Lewis was first diagnosed with health problems. All the what if I’d have done x y and z then things would be so very different. I know it’s not true and that nothing I did would change this course in our journey. 

Today has been a hard day emotionally. I had a tough physio session yesterday where I had to try and get off of the floor under my own power in case I fall at home and noone is with me.

In an hour long session I managed to turn my self 160° on the floor and failed at getting myself into my chair without the help of the physios. This challenge I had known all along was set up for failure so, in all honesty, I knew it would be one I wouldn’t succeed at.

That session in itself was absolutely shattering and my arms burned for hours afterwards, in fact when I woke up they were still burning.

This morning was exercise group. I really wanted to try and do some controlled work in the bars so the RAs set me up and assisted me in a variety of activities.

The first was walking from one end to the other holding onto the bars.  Well apparently I would put the world twerking champion to shame!!! My leg spasms cause my whole body to shake and it makes moving my right leg extremely difficult. It really caused me issues getting from one end to the other. It is physically draining and so effort full.
I then did side stepping to the right and I was getting so frustrated with my right leg. I did it which was a miracle in itself.
I then did side stepping to the left and it was a little easier and a bit less effort full.

After a 10 min sit down to try and recover I then walked back to the other end using the bars and a lot of muttering under my breath. I pushed so hard on the bars for all the activities that my knuckles were white!

I then had my hardest task. One I so desperately want to achieve at as it will open up so many opportunities at home to do activities with Paul and Adam.

Standing up, looking down the bars & in front of an RA sat on a stool I slowly let go with my right hand. I had to try and hold my balance whilst just holding on to the bar with my left hand.

I wobbled so much from side to side and backwards and forwards. My leg was spasming and twitching and jumping around and I have a reasonably big issue in that because I have no feeling from trunk down, I cannot find my centre of gravity.

I look like a human weeble. It’s so hard.

I tried with just holding on with my right hand and the same thing happened again. The RA had to keep moving my legs and hips to better positions to try and control not only the balance issues but also the stupid jumpy legs needed controlling.

By the end of the session I’d managed 2 x 40sec stands and was exhausted. 

I think exhaustion may have had a leading role in what happened tonight.  Yet again in totally humiliating fashion I had a fall in the bathroom.
All the staff were on their break and I didn’t want to disturb them so I took myself off to the bathroom and attempted to go to the loo. All fine you may think, well I thought so. That was until I went to get back in my wheelchair. Just as I was lowering myself into my chair it slid and I ended up in a heap on the floor. I’m not 100% sure what happened but after pressing buzzer for a hand up, I ended up with the emergency buttons being pressed and all the staff ended up in the bathroom trying to work out how the hell to get me up.

It was decided the hoist was the best option for helping me up so up I went.

I was taken back to my room in the hoist and had the nurses check my body for any damage.
I’ve got a graze down my left side, not a huge one but it’s there all the same.

After a lot of tears and 2 cups of tea I’m feeling ok but humiliated, angry, frustrated and mortified that a this has happened.

The only really good thing that has happened today is that I have started to get to know a lovely lady called Elizabeth, who lives in New Mexico. She has been paired with me through the website http://www.whoirun4.com

It is an amazing site which matches runners to those who are unable to run themselves due to illness or trauma. Lewis has had a runner (Jasmine) for the past 4/5 years, Adam has a runner (Amy) who has run for him in the past 2 years.
Now is my turn and I’ve landed on my wheels.
What a truly lovely thing she is doing by using her legs to make miles for me while I cheer her on from my chair. 

I highly advise that anyone who has some form if disability, no matter how do you are, or how severe things are, join Who I Run 4 and get a fantastic buddy just like me!!!

Right time for buzzing and getting a hand into bed.

Night all.

Apparently tomorrow is a new day!!!!

TTFN – As the bouncy orange one would say xxx