Getting out

28.04.19

Today, spurred on by some friends running the London Marathon, I decided that I wanted to go for a run. I haven’t run since Christmas Day when I did the Park run as I was undergoing various tests and was told not to do any strenuous exercise after the biopsies. I decided that it was time to get my trainers on and get out there. After a very slow 2.5 miles I came home and loaded the results on Strava which promptly told me my pace is much slower – thanks Strava but I think I know that 🙂 I felt good afterwards so I took the dogs out for a 3 mile walk. Not for the first time on this journey have I asked myself, ‘have the Doctors really got my diagnosis right?’

I have never really felt unwell, I’ve had a hospital admission for some chest pain (?MI but not thankfully), have a problem with Carpal tunnel syndrome in my right hand, but have had this for 5 years so it may not be connected to the Amyloidosis at all and I’ve always had low blood pressure so have been prone to feeling light headed for years but maybe this Amyloidosis has been at the root of these issues all along. I suppose the SAP scan will help prove this one way or the other. I must say that to look at me you’d think there’s nothing wrong with me and apart from my frothy pee I have no other major symptoms and my kidneys are still filtering my blood well although leaking massive amounts of protein. I feel like a fraud, people comment that I look so well and I certainly feel good. I can’t say that I’m too keen for the doctors to start chemotherapy whilst I am so well and hope that should this disease have been caught in its infancy that there are less aggressive treatments available, although reading the literature this seems unlikely and it’s just wishful thinking on my part. Anyway I will keep doing what exercise I can for as long as I am able as it helps to clear my head and elevates my mood.

Well done to some of my Bellahouston Harriers team mates for such fantastic running today, truly inspiring. It reminds me that the way forward through what is to come will be a marathon in its own right and I’m on the starting line.