Social media is our friend. Thanks largely to Twitter and Facebook, I have been commissioned by the ME Association to write a regular column on my life as a carer for its membership magazine ME Essential.
The invite to write an article on caring for someone with ME/CFS originally came via Twitter from Tony Britton, the MEA’s excellent and extremely hard-working publicity manager.
I then offered to write the regular column as I realised it was almost impossible to cover everything in the 600-word limit – I’ve always struggled to keep within copy length limits, as most of the subs I’ve ever worked with can confirm.
So, for the foreseeable future, I will be providing an insight into the life Rachel and I share.
The first column appears in this month’s issue of ME Essential and is more a general introduction, so it will be familiar to anyone who has read this blog over the last few years.
I’ll blog all the subsequent columns once they have appeared in the magazine – or you could just subscribe to the magazine!
I consider myself a very lucky man. I’ve always been a glass half full type.
The last five years or so haven’t exactly been planned or even worked out in the way either Rachel, my wife, or I envisaged.
About six months after we married in July 2006, Rachel was finally diagnosed with ME. This was more than a year after she originally fell ill and had been unable to work for most of that period.
It was also around the time I took voluntary redundancy from my relatively secure and well-paid job to go self-employed. All in all it was quite an upheaval – the ME diagnosis, self-employment and the wedding.
But it worked out – I secured a steady stream of well-paid work and our wedding day remains the happiest and best day of my life. There was one point I struggled with back then and if I’m honest I still have difficulty with today – I’m now a carer.
I don’t like the term “carer” and probably never will. I tend to regard the help and support I’ve provided Rachel with, pretty much 24/7 for the last five years, as being what I always wanted to be – her friend, her husband.
Yes, I have to do these things because of the severe limitations placed on Rachel by her illness. But I want to do these things because I would much prefer Rachel to have the space and energy to concentrate on the more important things in life – herself, her creativity, her enjoyment of life, us.
Rachel and I had a vague idea about what married life had in store for us, but most of these thoughts, ideas, assumptions and plans quickly flew out of the window as her health deteriorated and she was left with no alternative but to quit her job completely.
At the time I was mainly home-based in my self-employed work, which meant I was able to juggle my career with caring for Rachel without these two roles impacting too much on the other.
The self-employment was a success until the recession bit. I’m now back in full-time employment, working for an organisation just 15 minutes walk from home and which is flexible enough to allow me to carry on this career-carer role.
However, I still struggle. My instinct is always to stay home and offer Rachel whatever support I am able. She is my priority, nothing else comes close.
But in the real world I need to make sure we can maintain a roof over our heads, pay bills, eat, drink and survive. We need money for that and so I need to work.
Thankfully we don’t need money to laugh and joke – that has always come naturally to us. But the “real life” stuff does become something of a chore at times – for both of us.
There is always “stuff” to sort. Like skimming pebbles on the beach, no matter how many you throw into the sea there will always be plenty of others left to pick up.
The last few years have shown just how unpredictable and difficult life can be. I used to pride myself on not planning too far in advance and taking each day as it comes.
There are occasions now when I would dearly love to be able to say: “In six months time we’re going to…” and know that there is a very strong possibility it will happen. But the unpredictable nature of ME means that is a luxury we can’t afford.
Perhaps the biggest lesson of recent years is that there are very few certainties. So we should celebrate those that we do know.
I consider myself a very lucky man
My name is Paul. I’m a carer.