Busy, busy, busy!

November 29, 2013

Yet again, I owe another apology to you all for this week's blog being very late again. I just don't know where my weeks go at times!

So, last week I talked about Christmas shopping and whether to brave the crowds or to opt for online shopping. This week I can tell you that I'm going half and half, I've done some online and next week I'm going to go and pick some bits up. So hopefully, by the 25th December all of my friends will have wrapped presents from me under their trees, and my family will have wrapped presents from me under our tree!

On the Christmas theme, although this is a tad bizarre, when I was little I used to be absolutely terrified of Santa and the idea of him coming into my room to deliver my presents when I was asleep! I was wondering the other day what on earth made me so scared of him?! As I really can't remember, I did think was it Cerebral Palsy related? Obviously at that age I wouldn't have made that connection, but maybe I was scared of waking up whilst he was there and not being able to lie still?! Or maybe I was scared if he were to kidnap me or something crazy like that, I wouldn't be able to get away?! I really don't know what it was, but it does make me wonder!

It was my birthday on Sunday, another year gone! My parents did their usual trick of going mental on the old selotape and it got to the point where my mum took one of my presents off me as she said it was painful to see me try and get into it! Well, don't use as much selotape then, you've had your pre-warning for Christmas! On my birthday, we went to an open air Christmas market and I got very cold and miserable! I don't know about others, but my Cerebral Palsy means that I do struggle when it's very cold or hot. When I was at school, as it was a old building, in the winter it was absolutely freezing (no over-exaggeration, my TA wore 3 cardigans at times), but the teachers were actually really understanding and they often came and found me beforehand to say here's the work, stay upstairs (it was warmer in the Learning Support department as we always closed all the doors)! It was also funny in the form room in the morning as my form teacher would come in and announce straight away, 'Okay guys, everyone please do take their coats off, apart from Ellie'! Sorry guys, but to be fair I was probably just as cold as you with your coats off as with my coat on!

 

After I was nice and warm again, I went out for a meal with my family and 2 of my best friends. One of them actually has Cerebral Palsy too and towards the end of the evening we decided to accompany one another to the toilet (I'm not too sure who was helping who!). But we found a sign in the toilet, which said, 'WARNING, Floor slippery when wet', and we were like a) It's so nice of the restaurant to put a self-portrait of us in their loo! and b) Seriously, we really don't need the floor to be slippery for us to fall over!


So, on that note, I'll hand you over to this week's guest blogger Barry O'Rourke who is in his 30's and has Hemiplegia. Do keep your requests for guest blogging coming in either on here, Facebook, Twitter or email!

 

'A little bit about me would probably be a good start. I'm Barry, in my thirties, I'm a father of two, a sysadmin and I live in the woods on the edge of civilisation. I'm a semi-retired goth DJ, who spent the majority of his twenties DJing in and around Edinburgh, eventually ending up as a resident at (probably) one of the most well known goth nights in Scotland. My blog can be found atorodor.org.uk and I can be found on twitter as @barryorourke.

I'm not a teenager anymore, at times I may still feel like I am and I suspect that the majority of adults do, but are too scared to admit it. Whilst I may mentally still feel like a teenager at times I've certainly aged physically and since hitting thirty have started to feel it too. I'm now fast approaching my mid-thirties (and my forties!) and have had mild right hemiplegia since birth, despite only learning I had it in my early twenties and only truly accepted it ten years after that.

I figured it would be fun to write some advice to a teenage version of me, with the knowledge that I've gained in the last two decades.

Don't be silly, keep going to the physio
This is probably the biggest mistake that I have made! I grew up without a proper understanding of Cerebral Palsy and was encouraged from a very young age to be as normal as possible. In turn I ended up hating physio because it made me different so I stopped going as soon as I could which was as soon as I turned sixteen.

Abandoning the physio at such an active period of growth probably ended up causing the majority of the contracture that I have in my right leg.

Educate yourself, be informed
Medical professionals can only help as far as their training can take them, and a lot of them will only know what they were taught back when they qualified. Things have changed a lot over the years so it's a really good idea to get out there are educate yourself as much as you can about every aspect of CP.

When I started blogging nearly two years ago there wasn't much of an online community, recently I've been finding new forums and blogs pretty frequently. Sharing experiences and learning from others in a similar situation is often a lot better than the advice you'll get from a doctor with limited knowledge.

Use it or lose it
This is really important, The more inactive you are, the more inactive you'll remain. A gym membership is a good start, get strong and stay strong, strengh will help loosen you up and give you an increased range of motion. Learn as much as you can about mobility, and exercise as much as possible.

Alcohol may appear to be your friend, but is not a friend you can rely upon
In my late teens I made a couple of alcohol related discoveries, firstly it had a positive affect upon my spasticity issues, making me feel looser and making me appear almost normal to the casual observer. In addition to this it gave me the confidence that the majority of teeangers, especially those with physical disabilities lack in.

However, ten years down the line and a little too much reliance on alchohol results in a much weaker affected side than I would like, you see the problem with alcohol is that it stops the production of the growth hormone that maintains muscle mass, in turn making you much weaker, which inevitably ends up with you drinking more to help deal with the issues that drinking creates.

Alcohol is dangerous, keep that in mind!

Useful links
There are a couple of facebook groups that I've found useful...

 

  • Hemihelp

  • People with mild CP

 

and here are a few good blogs that spring to mind...

 

  • In Bloom

  • I Adapt Fitness

  • Karen Pape MD

  • Teen Cerebral Palsy

 

some mobility and fitness links worth a look...

 

  • Mobility WOD

  • Crossfit'

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