The breath, the breath. It comes to this. Two hours NIV per day will give my muscles a rest and get the air in far. This was the main outcome from the quarterly trip to the National Hospital for Neurology in London. We were first seen by a doctor, who didn’t know about me at all. After complaining, normal service was restored. Baffling and bizarre.
It’s not fun or easy being physically so weak. It’s dreadful.
Now antidepressants to help cope. The doctors have been suggesting since diagnosis. It’s helping. Morphine to help me sleep at night, and for breathing. It’s helping too.
Sleep at night, water in the night, feed, hoisting, personal care, hoisting, water, NIV, feed, nap, exercises, water, feed, NIV, feed, personal care, hoisting, sleep at night, focus on the basics.
Putting dates in the diary. Of course. Class 5 Olympics at the end of June. I went to Valentina’s, 4 years ago, just when I noticed the first problems. Now, I just want to be around to hear what happened. I’ll miss going. I’d love to be there for Sebastian.
‘You’ve been dealing with this for three years’, said the consultant at Queen’s Square, with a look of some understanding. Yes, it wears you out. I have to be on the ball every day, Jane the same. We have faced an unnecessary situation with the Department of Work & Pensions. When you get sick, you have to fight for everything, at the very time you and family don’t need to have to do so. While some staff show empathy, some display insensitivity. It’s wearing.
Over the last six weeks, Valentina has been on an exchange in Paris. It’s been life changing, and her French is great. Throughout this blog, I’ve written about some people who have made a massive difference to us. There’s a family in the Paris suburb of Massy, which has shown extraordinary kindness to Valentina, at an acutely difficult time for our family. In a world of celebrity worship, it’s people like this who deserve our thanks. I am also grateful to the local Steiner school there, for accepting and welcoming Valentina so warmly.
I looked at my son yesterday, and decided that I will stay alive whatever it takes.
I went through some photos taken between 2005 and 2013, which reminded me of a time when I did things with my family. To lose this so young is very hard to take. At least, I’m still here.
Running marathons, throwing buckets of ice over your head, eating chillies, climbing Kilimanjaro. People want to raise money. Feel they can do something to alleviate the suffering caused by MND. Governments say that their first duty is to protect its citizens. From what? Invasion, terrorism, and ultimately death. Why, then, don’t governments invest much more into research related to fatal diseases? A death is a death is a death. Lives saved by successful research versus certain defence spending.
You can imagine how much we have explained to our children over the past three and a half years. Here is my answer to Sebastian’s most recent question. You wanted to know why I make that strange coughing sound all the time. It’s because it’s difficult for me to clear my throat. This is because my coughing muscles are not as good as they used to be. It can take me twenty minutes to clear my throat, while it takes you a few seconds.