March is always a month of anniversaries. It was in March 2018, that my MND diagnosis was confirmed. And in March a year later, we left Cuckfield, and Sussex, for the last time, 19 years after moving there in March 2000. On a brighter note, my birthday is in March so I have now clocked up 72 years, six of them ‘Living with MND’, not something I expected to see when I was diagnosed, as half of all people with MND are dead within two years.
My birthday was celebrated by a family get-together with a meal followed by the traditional cake, but just four candles. Our grandsons were enlisted to blow out the candles, then the cake was taken away to be cut up. Our daughter, Fiona, re-appeared saying, “Hands up, who wants cake?”
“That’s not fair!” I cried, being incapable of moving my arms. I still got my cake, and a huge laugh.
I was really touched when Pavel, one of my carers, turned up with a birthday present for me. It was a personalised Nottingham Forest bedspread /blanket, which my care team had clubbed together to buy. Some of them gave me individual presents, too. Unbelievably kind and generous.
I had my quarterly, online MND Clinic this month. Little has changed since December but I was able to report the success of my battle against night-time itching, which might have been a side-effect of taking codeine. I cut out codeine and was coping with just paracetamol for a time, but the hip and shoulder pain returned, so I recently started taking the stronger painkillers recommended at the last clinic as a replacement for codeine. An amazing side-effect of the new drug is that I’m now sleeping like a baby, often through the whole night without even using the urine bottle. I haven’t done that in years!! Meanwhile, my new ventilator is still officially on trial while waiting for Home Ventilation to return to check my progress. I am, though, getting used to the difficulties with talking and eating I described last month. Sadly, nobody from Wheelchair Services has been in touch either. I mentioned it at the clinic so maybe my consultant can give them another nudge.
Fundraising activities for MND research/relief have been a regular part of my blog. Rugby players have featured regularly but this month was the turn of the pro footballers with their “March of the Day”. Led by former players, Marcus Stewart and Stephen Darby, who both have MND, the footballers completed a 178-mile, 3-day march from Bradford to Anfield stadium in Liverpool, which raised £130,000. See : https://www.bbc.co.uk/news/uk-england-merseyside-68647460.
While on the subject of football, I have been absolutely outraged by the Premier League’s decision to dock Nottingham Forest four points for infringing financial rules. I could fill this blog explaining why it is outrageous but that would be inappropriate!! Elsewhere in sport, a thoroughly entertaining Six Nations rugby tournament concluded with the favourites, Ireland, retaining their title despite losing to England. Well done Ireland!
We had some disturbing news earlier this month. Roger, my university flatmate, and good friend for 50+ years, was in Intensive care and in need of a heart bypass operation. It made me think about the health of my other contemporary friends and relatives. Almost all of them have some sort of chronic health problem including Doreen’s dementia and my sister Kate’s Alzheimer’s. Others have severe eyesight deterioration, persistent and recurring back pain, tennis elbow, plus various niggling shoulder, wrist , hip and knee problems. My cousin Pamela even surprised everyone recently by developing appendicitis, requiring an emergency appendectomy! All these various problems reminded me of the comment someone once said to me, “Growing old ain’t for sissies”!