May was my first big hurdle, it was going to be a big test to see if I could clear it or fall flat on my face again.
Two weeks of May were spent away from my own home and family on a Cruise as a carer for my Mum. She is severely disabled from 34 years of Parkinsons. Mum and Dad need two carers plus specialist equipment whenever they go away. My Sister and I were carers for this trip. It was further complicated by my Dad also being unwell before and during the trip and the fact that all of us were novices on this voyage.
Ironically we set sail on May 12th: International ME Awareness Day.
I’ve spent weeks and months making sure that I do things carefully at my own pace, being meticulous on my diet, and avoiding well known triggers. It was to be a holiday of lifetime for my Mum, who suffers silently without complaint and is a joy to be with. Pacing is so important in managing ME yet I knew for two weeks it would be largely out of my control. I also desperately wanted to make sure Mum’s needs came first and that she had a holiday that she deserved. Clearly, this was going to be a tricky balancing act to pull off and I fuelled it all with a lot of prayer!
New routines took time to be workable and I couldn’t have done it without the help of my Sister who was fabulous in taking the lead in caring for us all and being such good company!
However, I’m pleased to report that I cleared the hurdle! It wasn’t the cleanest and I caught my foot a few times (as can be seen on my daily grading record) but despite all the caring duties there was plenty of opportunity for rest and relaxation overdosing with vitamin D from the sun instead of a bottle! Cruises cater brilliantly for all diets on board and I impressed myself with my will power in turning down free champagne, wine, ice cream and even gluten free cakes! I stayed clear of the pool and spa which often make me unwell and generally avoided anything that I was unsure of. However, I did manage an on board yoga class which posed challenges of its own whilst at sea with stabilisers on! Boy, it felt good just to be in a gym class with my kit on!
A few weeks ago I wouldn’t have managed the long labyrinth walk from our cabin to breakfast, never-mind being able to push Mum in her wheelchair around most of the boat. I also had two weeks without stairs which was bliss! Mum had a fabulous holiday, we were able to spoil her rotten and I came home continuing to make improvements. I had even reached the dizzy heights of a 7.0 on my Grading scale!
The icing on the cake for May came when I returned to my Combination Therapist, Norah Wickerson http://www.tacklingfibro.co.uk/ Diet and supplements were reviewed and tweaked, breathing exercises were introduced as well as hands on physio which was a voyage of pain, discovery and relief! Gentle, simple exercises were rehearsed accordingly and then came the cherry on the top: discussing how to get back to regular sport and exercise! Apart from the usual caveats of careful pacing, I was given the all clear to start my come back.
I tried to keep composed and dignified but when someone offers you a dream that you had almost given up on, emotions run high. It’s was either a case of me kissing my therapist or bursting into tears! Fortunately for Norah, I went with the latter and came home on cloud nine!
So, after 8 long months I’m poised at the start of a long, gradual fitness regime. I’m happy with 20 minutes of walking and limited Pilates for now. It wasn’t long ago that this was still way beyond me so I’m already beyond the start. This next phase now feels like it’s a realistic, safe start. I will keep you posted with how I get on!
I know my road to recovery still has a long way to go, but with May successfully conquered I’m starting to dream that I could win this race!