I’ve been facing a few more demons these past two months. I went along to the school sports day and the village fete. I feel like I have been in hiding for a long time. I’ve been too embarrassed to see old friends that I haven’t seen for a while. I have wimped out of so many occasions especially around school. And then, when I do go, I enjoy myself.
All my friends have been so supportive and they all treat me just the same as before I started with MND. I have made the decision not to hide any more. Helen has helped me to set up my own blog on Twitter so that I can express myself easily and find a way of communicating myself again. We had a great time and lots of laughs, choosing the photo and setting up ‘Not Daft, Dumb or Stupid’. That’s how I feel: #mndhostage.
I feel as if my speech is impossible to understand now and I am spending more time using the gridpad to communicate. It’s good, but so slow. By the time I’ve typed something, the conversation has usually moved on.
I’m starting to realise what this disease has taken from me in terms of being a mum, which is the most important thing to me. Whilst I am obviously grateful to still be here, and I’m planning on being here for a very long time to come, it’s hard to give up the control of the day-to-day decisions regarding the kids’ daily lives. I have no real say in where they go, what they do, who gives them lifts, etc.
We are still experiencing conflict with the occupational therapist regarding equipment. They seem determined to predict a fast deterioration for me, which I refuse to accept. They seem to be refusing me equipment because, by their reckoning, I won’t be able to use it for long as I am presumably going to die soon! WRONG!!! It is so frustrating for me and Andy and it sucks away our energy. Everything is a fight.
I read a quote recently, something like “it takes a village to care for someone with MND”. It’s so true. I am lucky to have an amazing husband, kids, parents, sister, in-laws and friends. I’m not doing a list, but you all know who you are. I don’t always see a lot of some of you, but I know you are there and you should all know that I appreciate all that you do.