16/05/2024
So here I am a year on from my diagnosis. This date last year our whole world fell apart. All our plans for the future were completely blown apart, we were completely distraught not knowing if I would have any type of a future. But we have gotten through the last 12 months with the amazing help and support of family and friends. They know who they are and we are eternally grateful for everything they have done. I have numerous cards, flowers, prayers from soo many people, even from people I have never met! My sister's boss's parents sent me an amazing bouquet a few weeks ago! I have never met them but such an awfully kind gesture. Last November I organised a "Walk while you can" event and even though it was a really horrible morning, the turnout of people was incredible. Some people I hadn't seen for years, again I was completely overwhelmed by their support.
So my speech has been badly affected but thankfully we live in a time where phones, tablets are soo advanced that I can communicate through them. My swallow is very bad too so in March I had a feeding tube fitted. Thankfully it's not as bad as I anticipated and am feeling the benefits from it. I have a breathing machine which at the moment I don't need but am trying to get used to it for when I do. I'm still mobile, driving, cooking and giving orders around the house! And I'm hoping it will be like that for another year.
My whole outlook on life has completely changed. Nothing is guaranteed. The next 24hrs is not guaranteed for any of us. Yes of course we have to look to the future and plan things but they are never guaranteed that it's going to happen. But life is for living and I'm doing my best to live it now as best I can. I'm grateful every morning I wake and am able to get out of bed by myself. I'm not in pain which I'm soo thankful for.
So to everyone remember life is not guaranteed, enjoy every single minute of it and tell those you love, how much you love them.
Here's to you all and to another year with my MND 💙💙💙💙💙
