Today is Global MND Awareness Day. It deserves a whole week or Month but here we are and I appreciate you taking the time to read this post. It’s a bit of a cop out because if you follow me on Twitter you will have seen the content already but it is important that I share this again far and wide.
If you want to follow me on Twitter… Welcome.
I started writing this blog 6 months ago with the intention of writing regularly and making life easier for myself. I failed miserably and for that I apologise. The key thing is to say that 6 months with MND is a long time and so much can and has happened. Crucially I passed my Wheelchair test so I can be let loose on the World and was given a Smartbox communication tablet which quite frankly has revolutionised my life. In fact this blog was written and edited entirely with my eyes !
Despite the obvious I consider myself very lucky. I’ve travelled the world, been to events many people can only dream of but most of all I am blessed with such loving and caring friends and family, who in my hours of need have really stepped up.
I have entered a new phase of my life with MND. I’ve now ‘had it’ for 2yrs 9 months. I’m certainly not early stage and I’m not advanced stage either but I feel like I am in the middle stage, the stage where shit has started to get real. Don’t get me wrong, I know it gets a whole lot worse, but a number of things have declined over the last 6 months. I continue to try and make the most of life and my bucketlist slowly keeps going but I’m acutely aware that my happy-go-lucky adventures are over. Every footstep takes careful planning.
Remember when I said I wouldn’t leave it so long to write, well that was a load of rubbish because it’s been over two months! Even my dad has been telling me I’m lazy so here goes. Grab a seat, get comfy, as this might take a while, the last three months have been crazy.
The morning I started writing this blog was one filled with mixed emotions. Firstly happiness as Freddie had slept in till 7.45 and then we had such fun playing with his cars and toys. But then for the first time in a while it hit me as to how a fucking unfair MND is and that my ability to play with my son decreases every week. And while I try to treasure every moment with him, life, work and other everyday crap often gets in the way. That said, it’s easy to forget my own worries, when he bumped his head and asked me for a cuddle. I’ll take that any day of the week.
Its been a quiet month / 6 Weeks (by my standards at least!) although as I sit and type I realise it has been full of little bits and some unexpected adventures. Winter is tough for me. Shorts are no longer an option (because I’m not a postman) and pulling up trousers is hard on my own, tucking in shirts.. impossible, jumpers get stuck around my chest and I can’t put gloves on by myself. I’ve been outside my hands get really cold and useless which makes emergency toilet trips a 2 man job! So if you see me struggling, please offer your help. Other than that, I quite like winter and Christmas with Freddie this year will be magical.
Cover photo by Rob Wheatman
When I wrote my last blog post I swore I wouldn’t leave it as long in between writing because there is always so much to say. Well it’s been just over two months so I’m racking my brain to remember where I got to. Apologies this one is so long. Also, I don’t set out to make these posts upsetting but I’m aware they can be, in fact its always a good reminder for me that MND doesn’t just affect me, but everyone around me, so thank you all for being here, I hope we can have a few laughs at my expense too.
I know I say it a lot but its been another busy month since my last post in fact I’m exhausted at the thought of writing it but here goes…..
So a mate of mine (Squirt) suggested that I might be able to get laser eye surgery via the NHS as I have MND. I asked my consultant who said he’d never heard of it before but he’d ask one of his colleagues and sure enough I have had 2 appointments to discuss and another 2 booked so its looking promising.
I’m not a big fan of needlessly using the NHS’s limited funds but after careful consideration I think I have a genuine need. It can take me 20+ minutes and multiple attempts to put my lenses in – even then it relys on someone opening the pack so I am almost at the stage of knocking them on the head.
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 !!
