One year ago I was diagnosed with Motor Neurone Disease, even though parts of this year were hard that’s now in the past. I’m still walking and here in this world.
At the moment it’s my tongue and left side that isn’t working properly. I can’t lift my arm up due to my shoulder and my foot is just always down due to the muscles missing in the bottom of my leg. I also don’t really talk much anymore as it’s a mess due to my tongue and face muscles. I’d say I miss talking but I would say I miss singing more, not the proper kind just singing along. We were driving home from hospital the other day (yes I’m still driving too) and I just burst into tears, it was because one of my favourite songs was on and I was thinking about how I used to sing along at the top of my voice whilst driving along. A bit silly really, sometimes it’s just easier to cry than try and control it.
I’m still mobile, I can get myself up from a chair, walk up and down the stairs (carefully). I can dress myself (George helps me after a bath) and I can still put my socks on. My feet are getting further away from my hands so if George is here in the morning I ask her to put my socks on for me as it saves me the time and effort.
I’ve lost quite a lot of weight but now I’ve changed my diet so hopefully the trend will become flat. My right side has a little twitch but it’s still strong and helping me. I’ve had lots of aches and pains, irritating little illnesses but nothing really hard, it’s funny how you can get quite down when you’re coughing and sneezing and you’ve got saliva pouring out of your mouth. Now I just tell myself that I won’t remember it in a week and that’s almost always the case. At the time it’s hard but it goes and I don’t look back. In a way that’s how I deal with my illness.
Although I know what will happen to me I don’t know when and I’m not afraid of it. I obviously know what is happening but I just deal with it. For example eating, it’s already hard work, especially when I have a cough and I’m aware it will get worse. I know there are other ways of getting what I need so when the day comes I won’t really miss eating, it will become such a pain that it will be a relief. For now I just concentrate and be careful. I’m now in hospital getting a peg feed fitted so this will take away the stress of eating.
I also still work and that helps me get through the day, daytime telly is shocking so Netflix and Amazon Prime are a Godsend. I only hope what I’m doing is useful, I’d hate to be irrelevant, all I want to do is help. It’s hard sometimes as I’m stuck at home, not seeing many of my colleagues and sometimes my email is quiet. I tell myself to work hard and send emails out when I find things and have finished the work. This will get harder in the future but I want to do it for as long as I can. I’ll only walk away when it takes too long to do the things that would normally be simple.
That’s enough about me for now, thank you for your help and support through the last 12 months.