Thanks for your Support
Its a word often overused but I have been truly overwhelmed by the support shown from you all. I made a pledge to Becky to reply to every message people had sent. In my eyes if you took the time to contact me the very least I can do is respond. I still have lots to go through so bare with me.
Its been a busy time since we returned from holiday and trying to return my focus to work has been an issue. Who wants to work when you have only a finite time left – unfortunately bills to pay soon comes back and kicks you in the arse. There will come a time when I can’t work so I know I need to make the most of the opportunity I have… I have Las Vegas to finance after all !!
It is easy to forget how my illness impacts other people. Those closest to me have most likely parked it, whereas those new to the news are still dealing with it. Not that its a constant thought but I know from the many messages received, even weeks after, it has taken a while to get your head around it and find something to write. So a) thank you, b) if you do have any questions, please ask and c) just knowing you are there now and hopefully in the future for Freddie and Becky is very comforting.
Support is shown in so many ways
- Day to Day – None of my friends or family has even once hesitated (or taken the piss) when I needed or asked for help. Whether that’s doing up my trousers, putting on socks or buttoning a shirt or helping me dress my son (you try changing a nappy with 1 glove on) !!
- Fundraising – lots of friends have been in touch to ask what they can do to support me and the MNDA charity – this is something we have only just started thinking about and I’ll have details soon. However my crazy school friends got together (16 and counting) and signed themselves up for the Cheltenham Half – please show your support and sponsor them .
- Hands On – I’m not shy about asking for help – Far better to ask and have people look a little strangely than to try myself and look like a fool and be in pain. For example cutting food is a real issue for me. Now I simply ask the chef or a table companion to cut everything to bite size. Lifting is also an issue – I now just ask someone else to do it.
- Future developments – At some point in the future I am going to lose the use of my legs – there is no point ignoring this and as such we need to move house. We are in the fortunate position of knowing many builders, plasterers, sparkies, plumbers all of whom have offered their services when the time comes.
- Adaptations – I’m at the start of my disability journey and the adaptations I’ll need to use to support my daily life will increase hugely but here’s what I currently have:
- I now wear a hand/wrist support at night which helps prevent my hand from cramping in the morning.
- I also have finger support which helps me type by keeping the finger straight and not curled up.
- I recently purchased (for £30 bloody quid) a knife, fork and spoon that can be bent to make it easier to eat like an adult rather than a messy child.
- I have also installed a steering wheel knob as my shoulders and grip aren’t as strong as they should be (seriously, get one – they make driving so much easier!).
- Lastly, speech recognition. I’ve started using some software to control my PC as typing gives me cramp.
- Twitter – Becky shared my story with her sporting / work contacts. Many famous people (certainly in the rugby world) I know of but who only know of me by name. It gave me a real boost to read some of the replies she has had. Some legends of the Rugby World such as Sean Fitzpatrick, Jeremy Guscott and Martin Corry to name just 3, have reached out and that made me feel special. You can follow me on Twitter here
An update on my Bucket list
So this months (June 2017) adventures include…
Glastonbury (what have I let myself in for?) and an inter rugby-club cricket match. My golf day is now over subscribed so thanks for your support, oh and work, must remember to do some work !!
My closing Thoughts
The horrific events in Manchester & London show the fragility of life. While MND is cruel and ultimately takes a life it is to some extent under my control. What happened to those poor children and innocent by-standers is beyond comprehension and makes my blood boil. Lives stolen away – just heart-breaking.