Saturday, March 26, 2016

Back in the day…….

Comparing my back in the day days, to these new days, you could say my new life is now unrecognisable. As the one who rarely drank, I was generally the designated driver. Now I rarely go out, as I need to be picked up, dropped off and then collected later. And this has seen my life get so much smaller. I don't really miss going out, but I do miss being part of something bigger than me. I miss my friends. I miss being a friend. And I miss laughing so much, that my face aches, and I'm gasping for breath.

But on the plus side, I get to spend time with The Good Man, and The Little man. Plus, I know all of the characters in Peppa Pig, including their names. And I am now a Lego builder. At present, I might just be an apprentice, but the opportunity to become a Master Builder, is something that I aspire to. And we all need a dream……

What I dream of now, is a house where I can freely come and go without anyone's help. Every time I pull myself up the stairs, with The Good Man working my legs for me (a bit like a puppet master) I think that's one day closer to never having to DO THIS AGAIN!!! I have a handrail either side of the stairs. Think parallel but diagonal monkey bars…….

Anyway, the wallpaper has been chosen, for the walls that are just sprouting out of the ground, as have the tiles for the wheelchair friendly en-suite. Now, apparently, I'm supposed to have a shower wheelchair. But as I'm yet to find one that doesn't look like a white plastic garden chair on roller skates, and that doesn't require someone to push you in to the shower, and pull you out again, I went on a search for something that didn't make me scream, or my eyes bleed. And TAA DAA, I found just the right one….wooden and attractive. Not quite perfect, as they are more expensive than the plastic offerings, and there aren't as many to choose from. I haven't found THE ONE yet…..but I will…..

At the moment, it's due to be ready by the end of May. And I really can't wait! Watch this space!!



                                      


                                              
                                                                    Work in progress.


                                               
             

Wednesday, March 23, 2016

Feeling lucky. And happy….

Again, I apologise or my lack of writing. This apology is mainly aimed at myself. I'm sorry I lost the writing mojo. But hey hoe…..I'm back now…..So, what's been happening? Actually, quite a lot. Both personally and globally. I love lists, so here goes……

1. We moved house! It's in a different area. The local council have been helpful and inclusive, which is a MASSIVE improvement on the last council. As I type, an extension is being built, to give me easy access, and a downstairs bedroom and shower room. I'm so sad…..I started looking at wallpaper, before the walls were built. Today, I had to choose the glass. Easy you say? I thought glass was glass, but no. It can be obscured in quite a few ways…….who knew??

2. My niece is getting married this summer. This is the girl who made my sister cry and swear when she was little. But it turns out, that she is now a responsible and beautiful, fully fledged grown up. I am beyond excited about this. I get to see all my family, and take part in The Event Of The Year. My extended family are staying at the country pile, that's been chosen as the Wedding venue. I would have loved to stay here too, but it was not meant to be……here's the conversation, that I had with a bright spark that worked at the hotel….

Me…'Hello. I'm calling to book a room with you. Do you, by any chance, have any rooms that are equipped for a wheelchair user?'


I'd looked at their website and it said there would be disabled rooms built this summer.
Sadly not in time for the wedding. But that's ok?

Lady….'Yes, we can cater for wheelchair users. We have an adapted room. The closest one to the top of the stairs, so it's easy to get to.'

Me…'Do you have a lift?'

Lady…'No.'

So that was the end of that conversation. But not before I was told that if I needed the loo, to call for assistance, and a TRACTOR would come and get me. So staying there was a no. BUT………… and  
TAA DAA, my brother in law suggested Centre Parcs, which was perfect! We are making a whole weekend of it. I've bought an outfit for the wedding, and a new swimming costume, (not for the wedding) It's a shame our weekend is going to be broken up to fit in the wedding ;)

3. I have been taken off Tysabri. This was the 4 weekly infusion I had, in the hope it would keep my MS under control a bit. Well, it didn't. And the risk factors were pretty high too. I was willing to take the chance of irreversible risks, dying was one, but the doctors wimped out. And for various reasons, nothing else was a suitable alternative. So yeah, that's pretty scary. To be honest, free styling my decline is not much fun.

4. Terrorist attacks. Again. I don't know enough about this to comment really, so just WHY? 

My head has been full of decorative ideas for the extension, so much so, that I got a a really lovely pedal bin. Well, you've got to start somewhere…..

And Pharrell Williams, on his own, and with Daft Punk, provide me with my internal anthem at the moment…so click on the links above for the music videos.


Be happy 
Be healthy 


Speak soon. And this time, I MEAN IT!