Me in the standing frame which the hospital have lent me.
>I returned to the hospital last Thursday having had a couple of days without the casts. It was very nice to be able to get up and get dressed when I wanted rather than when someone could help. And to wear trackies and go sailing and have showers! But equally I was very frustrated to not be in the casts because it almost felt like giving up without giving it the best possible shot.
My physio got me back in a standing frame for a few minutes when I got there and she measured the angles of my ankles which were the same as they’d been on the Monday. That was huge because apparently she would have expected some deterioration.
I was and still am a bit confused by the measurements she got as for my whole life my left side has been substantially worse than my right but this time the left was a lot better that my right. That could be something to do with the way I stand and compensating. I didn’t really understand. I stand in a really screwy way which she tried to demonstrate to me so I could see the difference between that and how I should be standing but she couldn’t do it as she kept losing her balance when she tried.
They put me back in casts again, basically at my request. She thinks it’s unlikely they’ll be any further improvement although when I got upset and started crying that got changed to “well you never know”.
The angle of my ankles in the casts is the same as it was standing which apparently is no improvement but I remembered after I left that when I first saw her at the beginning of July my measurements were substantially different lying down to standing – and the casts were done whilst lying. So maybe there is a very slim possibility it’s better. Confused.
I’m going to borrow a standing frame from the hospital to have at home. When I go back in a couple of days to have the casts removed my Dad is going to take me so we can bring it back and he can learn how to get me in it. I’ve also been told that they won’t do any more casts.
I’ve been referred to orthotics regardless in the hope they can do something to help me out. Night AFOs were mentioned (deep joy), special inserts for my shoes and wedges are also possibilities I believe.
And that’s the latest installment of Emma’s Adventures in Serial Casting…
>Get a stupid answer!
For various reasons I went out yesterday without the fugly clown shoe like cast shoes on top of my casts
I went to the supermarket. I was wearing my red skirt which perfectly matches my red casts. Because clearly, matching your clothes and casts is important (unless I want to wear my favourite skirt which clashes but I love, that is…)
I said, nothing, there’s nothing wrong with them.
And she made it clear that was a totally unacceptable answer.
I just went “it’s a fashion statement”
And she gave me a dirty look. But she didn’t get a chance to say anything other than to call bye to my back as I moved away.
I am more than happy to talk to people about being disabled and answer questions. I always have been. But only if they are asked for legitimate reasons.
My life is not public property. Being disabled, using a chair and having my legs in casts don’t people the right to ask questions simply to satisfy their own nosy tendencies. But when I refuse to answer, people are put out.
It did feel good to put her in her place and especially to be flippant whilst doing so.
If found please return to Emma at A Writer in A Wheelchair.
I wrote an update about the serial casting on Wednesday night but for some reason it didn’t post. I can see it in my online drafts in blogpress but it won’t let me post it. So it’ll have to wait until I go on the PC and can go on blogger proper.
Am I the only one who finds it surprising that Blogger haven’t released an app of their own or at least made the website iPad friendly?
Things have changed and moved on yet again since I wrote it and surprised me yet again. This treatment process with the Botox and the casting has been very different to what I expected. It’s also been harder and occasionally easier too. I was chatting to a friend earlier and described it as one of the situations where you know that in the long run it should be worth it and you want to do it. But in the short term you wonder why you thought it would be a good idea and have fleeting moments of wishing you hadn’t started it.
I’m not saying I regret doing this, I’m very glad I pursued it and think it’s good. The amount involved and all the ifs and buts and maybes are a little overwhelming at times, that’s all. That and I don’t think I properly considered the emotional impact before this began. My mental health issues being what they are however I’m not sure I could have done so had it even occurred to me. I’ve never seemed to have definitive things which make me down or anxious etc, it’s all a bit random. Which for me is probably a good thing.
>This blog entry should have published last Wednesday, the 10th but didn’t for some unknown reason
So, the last time I updated about this was the morning before I went back to have the first lot of casts removed.
Those had been on for three days and when they were removed I had a small increase in the range of motion in my ankles – approximately five degrees which was described by the physio as small but I think actually is quite good.
I also had a substantially improved foot position, especially in my left foot as although both of my feet had turned in my left was the worst. Ever since then I keep catching site of that foot and thinking it looks wrong and really weird to see it in a normal position. I can’t remember the last time it was like that. You know you’ve got CP when…
I was put back into a second set of casts which were removed four days later (as they were on over the weekend). I got on better with those although I did have a blind panic moment late on the Saturday night when my foot started hurting and I convinced myself that my toes were going a funny colour. My parents came round and we decided it was OK to wait and see until the morning. I could wiggle my toes as much as I always could, they weren’t cold and when my mum pinched them they went white and immediately back to normal when she let go. I still don’t know what caused the pain (my physio had a really good look when she took them off but couldn’t spot anything) but it had gone Sunday morning. I’d been caught in the drizzle earlier that day and wonder if a touch of the dye on the cast shoes had ran onto my toes but I guess I’ll never know.
When the casts were removed it was obvious I’d had no further improvement which was disheartening. The physios (it takes at least two to do casting) got me up in a standing frame for a bit and then doing some walking.
There was some discussion about finding out if I’m a candidate for another tendon release on my ankle but I made it very clear that even if surgically it’s an option for me (having had it done twice as a child there is a question mark over that I believe), it’s not really one I’m prepared to consider. If it comes to the point they think it needs more than mentioning in passing I’ll go and discuss it but it would take a lot of convincing to get me to agree.
I asked if it was worth putting more casts on just to give it another shot and the answer to that was basically they didn’t have time then as my appt time was nearly up. I was told that if my feet had deteriorated by the time I went back later in the week they would recast me to ensure I maintained the improvement I’d had and asked to do as much standing and walking as possible before I returned.
I did absolutely loads of standing. Not a level I can maintain regularly but I definitely gave it my best shot.
>Simon and Schuester sent me a copy of Baby Be Mine by Paige Toon to review. Many thanks for that, I really enjoyed it!
‘He’s not mine, is he?’ That’s the question I fear the most. You see, I have a secret. My son is not fathered by my boyfriend, but by one of the most famous rock stars that ever lived. And he doesn’t even know it. One-time celebrity personal assistant to wild boy of rock Johnny Jefferson, Meg Stiles is now settled and living in the south of France with her doting boyfriend Christian and their son Barney. But they’re living a lie – a lie that will turn their lives upside down and inside out – because as Barney reaches his first birthday, Meg can no longer deny that her son is growing to look more and more like his rock star father every day, and less and less like Christian, and sooner or later, the world is going to realise …
This is a great book, pure unadulterated chicklit. I read it pretty much in one afternoon whilst sat in the garden and it was very enjoyable!
It’s the sequel to one of Paige Toon’s earlier books but you don’t need to have read it to read and enjoy this book. In fact I didn’t realise until I got to the end of the book that it was a sequel. That said I would like to read the first one simply because I’ve not read any of her other books and she’s definitely someone I’d like to read more by as she is a good writer with brilliant books if this is anything to go by.
The characters were believable and the plot didn’t feel contrived at all. They all came across as down to earth and could be people you know – even Johnny the rock star father of Barney once you got past all the drugs and famous girlfriend and all that.
If you want a really gripping meaty book that you have to work at this isn’t it but if you’re looking for something fun, enjoyable, believeable and relaxing this is definitely it. It has all of that and it keeps you reading whilst making you wonder what you would do if you’d been in Meg’s situation. A perfect holiday read and I definitely recommend it.
>I tried yesterday to post a video blog from my shiny but for some reason it won’t upload. I will endeavour to cover the main points and do so quickly as I have hospital transport coming and was told to be ready at 9.15 (8.44 now).
Casts went on Monday. that day was a huge struggle and ended in a crying, shaking, sobbing, puking meltdown that necessitated my calling my Mum round at 11:30 pm and unfortunately getting her out of bed in the process. Basically I couldn’t get out of bed without help, I got my skirt all tangled up, couldn’t get it up or down and it was catching in my wheels, it was too hot and the casts were a little uncomfortable due to the stretch and when I’d tried to transfer into my powerchair earlier that day hadn’t managed it meaning I thought I’d be housebound. Mum got me sorted out and left a little after midnight I think. She came back round at 6am to get me up for the loo again and then I went back to bed (definitely needed the rest!) and Dad came in at 9 on his way to work and helped me up.
We’ve managed to solve the bed problem by putting the mattress from my old bed on top of the one on my new bed which means I have a ridiculously high bed but I can get out of it without help! The loo I was also finding a little low which is strange as both it and my bed are an easy height usually. I keep a toilet surround (with bars and a raised seat) at my parents house and my sister dropped that in for me. Tuesday and yesterday I was able to transfer into the powerchair with help and as I’ve gotten used to the casts have been finding that easier and can just manage it solo now.
When I left the hospital on Monday I was given paperwork with instructions which included going to A&E if I had any problems out of hours (and a letter to take with me). I’m sure that if I could have found someone to take me I’d have gone Monday night, at the very least I was adamant that I was going back to the hospital first thing Tuesday and kept saying I couldn’t do it. But it didn’t come to it and it’s been a struggle at times but it’s been OK.
I saw my GP about something else yesterday (for which she gave me some lovely Erythromycin meaning I am once again on two antibiotics) and she told me that the hospital hadn’t even told her they’d seen me let alone that I’ve been multiple times and what they were doing to me. Don’t think she was best impressed. I wasn’t surprised she didn’t know all of it as my consultant rang me Monday afternoon to say he’d not made a note of what we’d agreed and what plan had been made for going forward and could I tell him? But i was surprised she hadn’t even had a “we saw Emma for physio and are sending her back to wheelchair services and to the consultant” type letter as I was first seen practically a month ago!
Apparently my casts may come off and stay off today. This would be if the treatment was complete (unlikely I think based on what was said on Monday) or it was considered to have failed. I think I knew deep down that it could fail but I’d not really thought about it and considered that.
Yesterday I didn’t need as much help, just my Dad to come in and help me get dressed as I got one leg in my knickers and couldn’t maneuver the other… which was fine as the possibility was planned for and I got up and got washed so I’d be getting dressed at a time he could be around.
It might be early but I’m kinda sleepy – I have some cast protectors but just in case they didn’t work I didn’t try them until this morning. Mum came and helped me shower but in order to be at work in time had to come at 6.30am.