Fatigue .. The way forward
I first encountered fatigue in the pre and post diagnosis leukaemia world, I had found myself immersed in .
The term was one I was familiar with, but expected it to pass with a short passage of time once I got back home into a familiar environment.
My BMT nurse had given me some good advice before leaving hospital.
”When you are tired , rest , when you feel like doing more ,do more.
I had that in the back of my mind as I stood at the bottom of our path, preparing to take my first walk, post transplant.
As I set off it was almost immediately that I realised this walk wouldn’t last very long. In fact it lasted about fifty metres in total before the comfy sofa in our lounge was sought out as a refuge.
That was the first proper realisation I encountered that made me aware that fatigue was something I would need to have a strategy to defeat.
That plan was exercise, a plot was hatched there and then .
My liking for structure and order was once more going to help me to achieve and to push past this formidable obstacle.
I felt a bit like a climber looking at going up Everest , but I was most definitely in the foothills, looking at the enormity of the task ahead, that was shrouded in the clouds.
A diary was set up to record both goals and achievements. Targets set , achieved and reset had always worked for me .
Anything is possible, but you have to have a plan .. A goal without a plan is just a dream.
Those early exercise sessions in the autumn of 2016 were very easy to record. Looking back now , when a walk of a hundred metres was considered a good day, I realise how far I’ve come.
Walking for short distance evolved into being measured in minutes , those minutes changed eventually into miles.
The new year that was 2017, saw me add in riding a bike onto the walking plan.
Again the process was the same, short rides evolving into daily rides .. Which then became training rides.
As the fatigue wasn’t too keen on releasing its vice like grip from my life, it was a battle to actually get out of the house on many occasions, to do my planned schedule .
I was inspired to push through the issues by a fantastic quote , one of many actually, that I had come across.
“Remember you can keep going long after you think you can’t “
Fast forward to June 2019 ,I was on the start line of my first Century bike ride at a local event. That quote was taped to my handlebars, I drew on its sentiment many times during the nine hours of sustained pedalling it took me to get round the course.
Fatigue still takes me off to its dark void on many occasions, however now, I can fight back more frequently.
Having a positive outlook and will to change my life, following a very long road of near continuous treatment over the past four years, has helped enormously.
Exercise to defeat fatigue was a plan that seemed like a good idea at the time, now it actually seems like the best idea I’ve ever had.
Diagnosed with Acute lymphoblastic leukaemia
Treatment.. Chemotherapy,Bone marrow transplant,Radiotherapy
February 2018 Relapse
CAR T-Cell therapy
The journey continues... Keeping those pedals turning
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