Live while you can

September is always a melancholy month to my mind.  Suddenly it’s dark much earlier, the summery garden begins to fade (and people start talking about Christmas). 

This year September has been true to form and has brought some disappointments.  We thought it would be great to take advantage of travel restrictions easing and book a half board week away in November at our favourite hotel in Costa Adeje, Tenerife.  A ground floor hotel room was available, flights from Luton were plentiful… let’s organise some single trip travel insurance quotes first to be on the safe side.  First quote £2,250.  WHAT?  Second quote £4,800.  FORGET IT! 

Quite clearly someone who has MND, who has been told that it’s a terminal condition, who also has a history of heart attacks and prostate cancer is too big a risk.

We made the most of the remaining good weather with trips to our static caravan and days out.  We also took the train to London for a consultation with the respiratory team at Queen Square.  My peak flow and peak cough have declined quite markedly since June, CO2 retention in my lungs is up, and I’m experiencing increasing amounts of congestion in my lungs.  These are becoming noticeable problems, but I haven’t been able to use my ventilator much because of excessive salivation and an inability to swallow when lying down.  This sialorrhea was improved a bit when I started taking Amitriptyline tablets and now Hyoscine patches have been added to my growing list of medications.  Marketed as a preventative medication for travel sickness (some irony there) a known side effect is a very dry mouth.  It’s sort of working for me now and I now start every night on the ventilator.

I’ll leave my thoughts and reflections on September with a quote from a book written with humility, humour and humanity by Father Tony Coote, an Irish Priest who developed a MND at the age of 53.  Within two years he had died, but not before raising the profile of MND in Eire and raising €70,000 to increase from three to four the number of MND specialist nurses in the country.

The book was recommended to me by a former colleague and friend, and I like Tony Cooke’s central philosophy:

If you set out thinking you can battle or fight with MND, you will always be the loser. You will waste so much energy that would be better served preserving your strength in order that you can focus with clarity on what really matters.”

(from “Live While You Can: A Memoir of Faith, Hope and the Power of Acceptance” by Fr. Tony Coote)

Sounds good to me.  I’ll try not to waste my limited energy.