Free fallin / Owner of a lonely heart

Free fallin…

I fell down the stairs before Christmas. I came down early in the morning, missed a step and torpedoed down into the hallway wall. When I landed I quickly realised I’d broke my little toe. Jayne ran down screaming “Are you ok?” “I’m ok but I think I’ve broke my toe.” I said, “How do you know?” She asked. So I started laughing and said “look” gesturing down at my left foot. All my toes we’re pointing north apart from my little toe which was pointing east. It was now I realised I’d dislocated it and not broken it. We both started laughing, I’ve always had a high tolerance for pain so a dislocated toe isn’t going to send me into a panic. I hobbled into the living room and Jayne suggested she put it back in place “Sound, I can’t be arsed going the hozzy” so that’s what she did popped it back in and that was that. A few years ago Jayne would’ve panicked and insisted we go the hospital and ring all my nurses to let them know, now it’s just a normal day and we just get on with it. Part of living with this terminal illness is accepting and adapting to  what it throws at you. We never know what the day might bring that’s why we take each day as it comes now. That’s a bit of a cliche but it’s definitely a way of life in the world of MND. 

Owner of a lonely heart…

I imagine most terminal illnesses to be a bit lonely from time to time but the longer you live with MND the lonelier it becomes. I’ve spoken with several people who’ve had MND longer than I have and we all agree that the people who die early on with this disease are the lucky ones, if you can use the word lucky in the world of MND. 

I met a man with MND a few years ago, who had had MND for 6 years, still walking and talking. It was brilliant to meet him. He was a scouser and a top man. He gave me valuable advice on living with MND. He told me the longer you have MND the more isolated you’ll become, at first I didn’t really understand what he meant. He said “People will come and go Mark, they’ll be in your life for a bit then they’ll leave.” I told him that could be life in general though. “No Mark, MND’s different mate.” The longer I’ve had MND the more I’ve realised his words to be true. I still find it amazing that some people still don’t know how to act or say when they see me. I’m still me, I always will be. 

I’ve watched people who I’ve known for most of my life slowly drift away. I’ve watched people who I met through the MND association who work and volunteer for them slowly drift away because I have an opinion, yet there all over social media claiming “they’re absolutely dedicated to supporting people with MND.”  I’ve watched some of Jaynes friends slowly drift away. Imagine how lonely it is for her at times. It’s not nice but that’s life with MND.  I haven’t changed, I’m still here, I don’t stink of Billy Ocean, I use decent deodorant! When you can’t do the “normal” things in life people distance themselves from you. Am I disappointed in these people? Of course I am but that’s life. They obviously have their reasons. I just wish they would be honest with me and we could move on. Listen, I’m not moaning and I don’t want people to start feeling sorry for me, far from it. I’m just being what I’ve always been in my blogs; Honest. 

I’ve been in touch with a few people recently diagnosed over the last few months all under 30. What can I tell them? Everything’s gonna be ok? Life with MND is a doddle? No, I’m honest with them because I wish somebody was honest with me in 2010. I tell them to go and enjoy life, if you want to do something do it. Every person I speak to with MND tell me the same thing that they have learnt more from talking to someone living with MND than speaking to someone from the MNDA or a medical professional. One person told me their GP told them “Don’t exercise and rest up” Seriously?? Why would you tell someone that? Rest up and think about death or get off your arse and live you’re life? There’s only one winner for me. I haven’t got a secret formula or a magic wand to wave and make it all ok. I just try and offer support and guidance as well as an honest insight into what to expect in the world of MND. I’ve yet to meet someone with MND who wants to sugarcoat this illness. It’s a killer there’s no other word for it. 

Unless it affects someone high up in the government, no change will be made legally and that’s the harsh truth. If you’re a regular reader of my blogs you’ll know that I don’t trust anyone in authority when it comes to MND issues. I’ve got good reason not to. If we continue to fanny around the MPs who are supposedly voted into power to help the people, then we will continue to swim against the tide in trying to make changes in improving quality of life for people with MND. I can’t even swim now so what fuckin chance have I got?? 

http://www.bbc.co.uk/news/uk-scotland-scotland-politics-35228435

Please read the link above and see what shit goes on in the world of MND , broken promises. 

MND can be a lonely place at times even with good support around you. Please keep supporting the MND community and please keep raising MND awareness. Thank you. 

Enjoy life and keep smiling.

To be continued…

Mark