Tag: Cerebral Palsy

Surprise injections and more

So it turns out that the appointment that I had on Friday wasn’t so scary after all. In fact, I’d say it went rather well.

Quite a few things happened actually. We discussed maybe trying a new kind of splint as opposed to my callipers because they blister me so much, although I have to go for more appointments with a physio and someone who deals with splints to weigh up pros and cons first so I won’t go into details about that yet.

A few suggestions were made about things that might make my life in the kitchen a little bit easier. The occupation therapist who was there took my concerns on board and is going to do some research for me and try and get hold of some equipment for me to borrow to see how well it would work for me before I buy any. Again, I’ll let you know more when I do.

And, oh yeah, they gave me some more Botox in my left leg, which was an unexpected, (nice) surprise.

I’ve had this treatment done a few times as a kid, and once again last year as an adult and every time it has worked well for me. I mentioned to the doctor who was there (the same one who gave me the injections last year) that I thought it might be worth doing some more. She agreed that it would be.

“We can do it today, if you like” she said after giving it some thought.

“Er, yeah okay.” I said, a little shocked that that was an option.

And so we did.

I wasn’t expecting it but I wasn’t about to turn it down either.

“Bet you’re glad I came with you now,” Mum giggled as she helped me roll up my jean leg and gave me her hand to squeeze. Yes, I still like to do that. When I use to have them as a child, the would numb my legs  first with what they called “magic cream”. Now that I’m all grown up I don’t get that anymore, but I don’t think Mum minded me grasping onto her too much.

I personally don’t find that these injections hurt as such, it’s more like you’re being stung in my opinion, but it’s just nice to have someone there, you know?

Now that the deed has been done, it means that the intensive stretching has to start so that we can make the most out of it. So far, I think we’re doing pretty well at keeping on top of it, but it will be a couple of weeks before we’ll be able to tell what a difference it will make.

Let’s go, go, go!

Getting butterflies

Once a year, I have an appointment at a clinic with various medical professionals, from doctors, to physiotherapists, and occupational therapists. My parents come along  for the ride too and we all discuss my progress over the last 12 months, and what we can do to make sure I keep improving in the 12 months ahead.

I’ve got butterflies in my tummy because that’s where I’ll be going tomorrow, and I always feel slightly nervous about what they might suggest. In the past there have been things like returning to using the AFO-style splints that I used to wear, to swapping these for my current callipers, and having Botulinum Toxin injected into my legs to try and make the muscles less tight. After those there is some intensive physio that I have to do to get the most out of them, but I’ve always found that they’ve worked well for me.

I’m sitting here trying to up with a list of things I want to bring up at the appointment, I have a few things already, but Mum and I are going to put our heads together and try come up with some more before we go , because we might as well ask all our questions in one go.

I’m nervous because I don’t know what (if anything) will be suggested. I always wonder if they’ll suggest some kind of treatments that I’ve never tried before. That thought always makes me feel a bit uneasy, but if they think that it will help me for the better in the long run, I will more than likely agree to it.

Wish me luck!

Things don’t always go to plan

Yesterday I found myself having to go somewhere that I had never been before.  I always get a bit nervous about doing this, especially if I’m on my own, for obvious reasons. I decided to take the train because, although I getting used to taking the bus without help, I still find the choo choo much easier to handle. I booked my assistance in advance (as advised) so I was optimistic that things would run smoothly from a public transport point of view at least.

Despite being nervous, with the help of station staff and taxi drivers, I got to my appointment on time with very little stress and without getting too cold or wet, which is always nice. I think the meeting went well too, so I was feeling fairly pleased and wondered why I’d been awake half the night worrying.

After my appointment, I knew I had a bit of time before my train back home again so I thought  I’d brave walking back to the station rather than getting another taxi. I wanted to get some exercise anyway.

That was around the time it started to rain. Not too much, but enough to make the idea that I might get lost on the way seem even less appealing than it would do normally, so I decided I’d make things easier for myself and just take a cab.

It arrived. My walking frame Martha fit into the boot, albeit with a bit of persuasion.

“Where to, Love” the cabbie asked.

“The train station, please” I replied, thinking it would all be plain sailing from here. Little did I know that the area I was in for my meetings had two nearby train stations so I didn’t bother to specify which one I meant, because I thought there was only one and it would be obvious where I wanted to go.

I just so happened to be closest to the one that I didn’t want to be at, but because I didn’t tell the driver I wanted to be at ‘Station X’, because I thought that he’d know where I wanted to be because the place where my appointment was at also had the place “X” as part of its name. However, station “Y”, where he took me, must have been closer to where I was, because that was where I found myself getting dropped off. Only silly me didn’t realise straight away, not being from the area and all.

Yes, I ended up in the wrong place. Away from where I had already booked my assistance, only because I didn’t know either of the stations I didn’t realise until he had already driven away.

At this point I really couldn’t be more grateful to all the staff who helped me that afternoon. Not  only was I somewhere else I’d never been before, but the station was also being operated by staff from a different rail company to the one I had booked my travel assistance with.

Once upon a time, this would have thrown me into complete meltdown, but I stayed calm and wondered over to the assistance desk where I relayed the story to the nice person behind booking office, even though I was still a little confused as to how the driver and I had managed to get so mixed up.

He was amazingly helpful and rang the other train company, explained the story and offered to put me on the next train that would get me to where I needed to be. They agreed to cancel the help I had arranged for the other place, and informed the staff at the station I was going to that I’d be coming in on another line, at an earlier time than expected.

That sorted, I was helped onto the train, and the people working at the station I was going to still managed to fit me into their schedule to help me get my connecting train home again. Now that I got through it all safely I find it quite funny.

I’ve learned a lot from this experience, and it was quite a confidence boost for me that I didn’t panic. I’m actually quite tempted to write to both companies involved to praise them for their customer service and thank the staff involved for going the extra mile, but I don’t know any names so it probably wouldn’t make any sense to whoever ended up reading it.

But thank you to all who helped me out yesterday to make sure I got home again in time for dinner. I couldn’t have done it without you.

 

 

 

 

My Smurfette Wheatbag

My Smurfette Wheatbag
My Smurfette Wheatbag

So I thought I try and raise a smile this Friday so here goes.

I decided that I’d try do this by posting a picture of my Smurfette Wheat bag, mostly because I think it’s actually quite cute. Yes, I know I’m 22, but in my opinion it’s fine to always carry a torch for those TV shows and characters you loved to watch before school while you were chompping down your Coco Pops (other breakfast cereals are avaliable).

I actually though I’d lost this one somewhere in and amongst the other army of wheat bags that my family seem to own, I always did like this one because it’s one of the smaller one because it smells of vanillia, which makes a nice change from all the other lavender scented ones that we have.

Have a nice weekend guys,

Nic

Change is in the air

Well, today I’m feeling really quite positive and motivated, which is nice. I think that it could have something to do the think fact that my room has been recently redecorated, and sometimes I think a change like this can do us all some good.

I’m quite excited because I’ve got a new wardrobe which  is lower down that my old one was so that it’s easier for me to get my clothes on and off the rails without almost falling over with the effort, or simply giving up and throwing everything into a pile at the bottom. The latter is what happened far too often.

There’s also a nice, new comfy bed. It’s much bigger than my last one, which will give me even more room to practice being a starfish at night, oh and it will make it easier for my mum to do my physio on it, but I’m far more excited about having more room to sprawl out in if I’m honest. I’m half in love with it already because I went to sleep with a very achy back last night and when I woke up it was as good as gone!

In my spare time,  (AKA when I’m not frantically job hunting),I do a lot of fiction writing as well as working on my blog. Usually as I do it I always hope that one day other people will read it and enjoy it, but I never expect that to happen. Today though, as I sit here in the writing cocoon that I have constructed for myself, tapping away and the keyboard and listening to Paramore, I’m starting to feel like maybe at some point they will. Not just yet, but it feels possible. We’ll see.

The extra effort that I’m supposed to be making with physio has actually got off to a pretty good start. I know it’s only been two days since I wrote the post declaring that I was going to try really hard so I shouldn’t get too excited, but it all helps, right? So far I’ve only made a few small changes, but hopefully they will all combine together to have a big impact on me for the better.