Small Steps & Big Goals

I’ve been at Snowdon now for approx 1.5 weeks and it’s been so very tough,physically,mentally, emotionally.

We have a big time table on the white boards in our rooms. This details who we are seeing, what speciality and the time & day.

It’s handy to look at a glance what I’m doing but also fills me with anxieties and fear when I see I’ve got physio.

My biggest fear at the moment is letting down all the staff who are dedicated to get the best from me.
I scared of letting down Paul and the boys by not progressing quickly enough.
Deep down I know that I’m not failing anyone and that I just have to take it ‘step by step’ day by day but I just want to go home.

I had mobility today with a physio and therapy assistant in the big gym. Paul came to watch a bit. I was so desperate to show him that I’m making progress even though it’s a tiny flicker. I so didn’t want to let him down.

I started off on the parallel bars. With great effort I managed to walk up and back down. I have a huge problem whereby my brain isn’t passing messages through to my legs and I can’t lift my toes up properly so they drag when I’m walking.

I then walked back up the bars again.
The therapy assistant decided to make me walk backwards. I’ve never done this before and scared me so much.
It was really hard work and my toes again wouldn’t lift. Paul laughed and said I looked like I was doing the moonwalk!!

I spent a fair while sat in my chair while they found a piece of equipment that would help lift my toes.
My right foot is much worth than my left. It just doesn’t seem to want to do as I want.
Well after a lot of faffing around trying to work out how to do it we got this piece of equipment to work.

I have a strap that goes diagonally across my chest which is attached to a strap round my waist. A bungee cord is attached to the waist strap and attaches to a strap the is wrapped round my right foot.

Well I looked a sight but I’ll try anything to get my legs to do something vaguely normal!!!
They got me to walk up the bars again and to my surprise my toes cleared the floor as I took a step! Found it hard having my trainers on on my left foot. Found it dragged more so put my slipper sock back on. So trainer on right foot with this contraption, slipper sock on left foot and we made our way back to the ward in my chair ready to do some walking.

Well I surprised myself. I walked 10m with my frame across the ward! I only stopped once but I made it! Right foot clearing the floor and left foot doing its little drag!

I am so chuffed with myself. My arms hurt like crazy, I’m super tired and my back is killing me. Nothing a dose of oramorph won’t find , along with a nap before tea!

I’m desperate to improve in all areas but yet again this morning I had to get a nurse to help put my trousers on as couldn’t get them over my feet. I’m no longer as flexible as I used to be. That’ll be the extreme weight gain causing that! 2.5st in 5 wks!!!!! It’s insane.

How on earth do I lose this when I’m not mobile.

Oh well 1 achievement down – rather a lot to go. I have to keep myself grounded as if I push to far I’ll end up poorly in hospital again.

I’ve got my Goal Planning Meeting tomorrow.
All the team around me – physio, OT, consultant, key worker, new social worker will all have a meeting with me. This is to discuss my goals, how they think I am doing and discuss my hopes about my treatment.

I’m missing the boys terribly and just want to snuggle up with them. This weather is perfect snuggle weather

I did manage to break out of the ward today though when my friend Mel came in and took me to tescos in my chair.
She has been my shining star the last 2 weeks. She’s been shopping for me, kept me company and not changed her attitude towards me.

I managed to buy Adams birthday cake, his cards, some balloons, banners, candles and wrapping paper. Paul brought up his present so I can wrap it and have it hidden ti he comes up on wed

Hate that I am not at home for his birthday. They are coming here but it’s not the same.

Oh well. I’m now going to go and look at all the pictures of Lewis that his carers are sending me. Scrummy boy!

TTFN x

SN Mum

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