Posted by: mads04 | November 10, 2015

Catch 22

We’ve all said at one time or another ” I can’t do right for doing wrong.” 

Well, MND should have that quote as its motto. Whatever you have to do to try and survive with this illness, MND it will find a way to fuck it up for you. For example, you have to eat a softer diet, ie pasta, noodles etc, because harder food such as meat or pizza are more difficult to chew, so you risk choking. You try food with lots of sauce on to make it easier to swallow, chunky soups are ideal. I have a spoon and fork with thick handles on so it’s easier for me to hold. I’ve also got the Charlie Drakes(shakes) so by the time I get a spoon full of soup to my mouth, most of its back in the bowl!. You’re a cruel mistress MND!! Catch 22! 

And whilst I’m on the subject of food. Any chance Dominos could stop sending me texts to tell me about their “Amazing new toppings” it’s doing my fuckin head in now! 

Now that winters here I have to stay warm, mainly to keep the flu and other viruses away but the downside of having a load of clothes on is that my arms are already weak and with the extra skins I can’t fuckin move at all. It’s like being in a straight jacket. Harry Houdini would struggle to get out of my coat! Catch 22

I need glasses to read now, mainly because I put eye drops on my tongue, yes you read it right. It’s to stop my saliva getting to excessive, the side affects off the eye drops dry my mouth. Another side effect off the eye drops is I get terrible blurred vision, so hence the glasses. I love reading and can turn a good book over in a couple of days but I can’t pick my glasses up and put them on. If I don’t have the eye drops in I’m like Sylvester the cat and without my glasses I’m like fuckin Mr Magoo!!. Catch 28! Shit, Mark put you’re glasses on!! Sorry, Catch 22.

I’m still walking, just, and I sometimes use my walking stick. Now it’s getting cold it’s hard to hold my stick because my hands get cold. Why don’t you just put a pair of gloves on dickhead? I hear you ask. Well when you’re fingers don’t work, it’s like trying to put gloves on a baby!! You’re thumb ends up with your index finger, you’re little finger is in bed with you’re ring finger which leaves my middle finger screaming at MND to fuck off.! Catch 22.

My head feels like a bowling ball most of the time because my neck muscles are deteriorating. When I’m tired it looks like I’m looking at the floor all the time. So I get a neck collar to keep my head up but to swallow with MND you have to do a manoeuvre called “Chin tuck” where you put you’re chin to you’re chest to make it easier to drink,eat and obviously swallow. Try doing a “chin tuck”with a fuckin collar on!! Catch 22

I can’t get a shower alone so I just have to sit under the water and let Jayne wash me. Washing my hair and body is the easy part, it’s when the razor comes out things get complicated. When Jayne shaves under my chin, I obviously have to put my neck back for easier access, but when I put my head back I risk getting cramps in my neck. When I get neck cramps I normally have to keep my head still for a couple of minutes and just ride it out,so to speak. I also sometimes go into the “chin tuck” because my neck just spasms. Now throw a razor blade into the mix and you’ve got a potential shower scene out of Psycho. Catch 22 

But other than all of that I’m flying!!!

My mate Ian Pratt who has had MND for 3 years and has campaigned ferociously to raise awareness and funds for the MND association without fuss. Ian now needs his family home adapting for easier wheelchair access. His friend and MND volunteer fundraiser Tony Bray has set a fundraising page up for him to help with costs. Ian Pratt Family – living with MND | Chuffed | Non-profit charity and social enterprise fundraising

https://t.co/Ikz4JzQwlP

Please share this link, Ian, his wife and young daughter need all the support they can get. Stay strong mate. MND Warrior 

I’m going to finish this blog by saying goodbye to a man who epitomised true human spirit. I met Eric Rivers and his fantastic family at the end of my first London marathon in 2013. Eric’s wife Davina had been in touch with me before the race and told me Eric wanted to come and meet me because he thought it was amazing I was doing a marathon with MND. This man and his family have done so much for people with MND. Eric’s words were humbling, Davina and their daughters strength inspiring. I could use many words to sum Eric up. Inspirational, courageous, brave, but I’ll use words that meant the most to Eric. Loving husband, loving father. No other words needed. RIP my mate, the honour was all mine, you will be sorely missed X MND Warrior X 

  

To all the MND Warriors out there, We never give up the fight.

Please keep supporting the MND community and MND awareness. It’s a shitty world especially when kids are involved. 

Enjoy life….

To be continued…

Mark 

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Responses

  1. Mark you are amazing my friend. I think of you often and hold you in my prayers. You ay have MND but MND does not have you. You are an inspiration.

  2. Mark, sorry Mads, I am entirely unable to find the words to describe my admiration for you and also how honoured I am to even know you, never mind call you a friend.
    Keep fighting Pal (I know you will)
    I’m with you all the way and so are Alty Ladies who often enquire about you to me.


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