(This post is part of International ME/CFS Awareness Day. It will also appear on the MeAware blog, along with many others written by people all over the world).
There are plenty of things I could point to as symbolic of the last three years.
Since Rachel first fell ill and was subsequently diagnosed with ME/CFS, shortly before we got married in July 2006, I could pick out several thoughts, issues, dreams, funny moments.
Each would nicely sum up her experiences of the illness, my feelings and my own attempts to juggle my career with my role as Rachel’s carer.
But I keep coming back to the same thing – my bike.
In so many respects my bike encapsulates so much that has happened over the last three years – some of it bad; most of it good.
The bad is the fact that a few months before Rachel started to get ill we began venturing out together on our bikes. There were no grand adventures at this stage, just pootling around the little city we call home.
But it was good to be doing something different and good that we had both rediscovered our love of being on two wheels. We had both been keen and regular cyclists before we met, so to be able to go out together was fantastic.
Since Rachel fell ill, however, her bike has been parked in the garage gathering dust and cobwebs.
She’s unable to walk for more than 50 yards without starting to feel seriously fatigued, so venturing out on the bike simply hasn’t been an option.
I’ve continued to enjoy going out though and last year invested in a new mountain bike.
My enthusiasm for my bike has now reached the point where I’m taking on a two-day, 140-mile ride from one side of the UK to the other – the C2C Challenge. I’m currently in the middle of a fairly strict training regime and loving every minute.
It is a personal challenge, not least the fact I have to ride 140 miles in two days!
But I wanted to do something positive and to raise awareness about the illness that has had such an impact on Rachel’s life and our life together, so embarking on something bike-based seemed the obvious choice. If I can raise some money for ME/CFS organisations along the way, all the better.
Another part of the challenge is to raise awareness about the role of carers in the UK. Millions of us provide a high level of care every day of the week for partners, relatives, friends and yet the Government’s failure to properly recognise this unpaid, full-time role is shameful.
I consider myself fortunate that I have still been able to juggle my career and caring, countless others have not been so lucky.
So the question I am asking ahead of my attempt at the C2C Challenge is: can you spare 10 minutes rather than £10?
I’m asking people to donate their time and not their money to ME/CFS and carers.
Time can be a much more valuable asset and my aim is to put it to good use. I’ll point those willing to donate 10 minutes (or more) to resources that will hopefully increase their understanding of these two issues. Or, I’ll be asking them to write to a relevant Government minister and their own MP to urge greater official support for those with ME/CFS and their carers.
People are willing to help, to learn more and to do their bit. I have no way of knowing what will happen as a result of my efforts and their generosity, but I’m a great believer in the idea that there is strength in numbers and having more people fighting for a cause can only be positive.
There are plenty of times over the last few years when I have felt utterly helpless and useless.
I know this isn’t the case, but it doesn’t stop such feelings from surfacing every now and then – especially when Rachel is suffering with a flare up.
Training for my challenge is going well and over the last few days I’ve upped my mileage. Last Friday I did the 26-mile Tissington Trail in Derbyshire and discovered something fantastic – you can hire a specially adapted mountain bike that includes a wheelchair sidecar.
So Rachel and I will be able to go out for a bike ride again – even if I’m the one doing all the work!
This is one of the biggest and most important lessons of the last three years – life doesn’t stop, you find new ways, you adapt, you go forward.
My bike may have started out as a negative example of Rachel’s struggle with ME/CFS.
Hopefully, three years on, it is now a far more positive symbol of what life with ME/CFS means for Rachel and for us.