My second column for the ME Association’s magazine on life as a carer for someone with ME/CFS has been published:
I have never been comfortable with labels, whether they are applied to me or my clothing.
I am Paul and I am many things. I’m a writer. I’m a cyclist. I’m an uncle and a godfather. I’ve got short legs and no hair. None of these define me on their own; they’re all part of who I am.
The same is true in my relationship with Rachel. I love every minute of being Rachel’s husband and friend. I’ve even started to come to terms with my role as her carer.
I don’t tend to regard the additional work I do around the house as anything other than things I do. I always used to cook, clean, wash, look after the garden (well, cut the lawn at least) and shop before Rachel became ill, so the fact I’m doing the majority of this workload these days rather than sharing it with my wife isn’t such a big deal.
Yet I think I might have unknowingly added a new role – in the early days of Rachel’s illness especially. I became the gatekeeper.
I didn’t mean to take on this role, it is one I assumed out of necessity. Rachel relied on me to help her deal with the “stuff” that life inevitably throws at you. With her cognitive abilities veering wildly between pretty good and densely foggy, more often than not it was me who made appointments on her behalf or who dealt with people who called.
Sometimes this is still a necessary evil. If Rachel is having a bad day then even basic communication with close family and friends can take more energy than she has available. I’m more than happy to act as this buffer.
The problem was we got stuck into a routine where I became more of a barrier than a buffer. I shielded Rachel from the “stuff”, but the danger was I was isolating her from others – parents, brothers, friends, neighbours – and from acting independently. Rachel has always been sociable and independent, the last thing I needed to do was deny her these two attributes as she already struggled to cope with losing so many other things as a result of her illness.
So we took a conscious decision to break out of this routine and largely it has worked. I still act as a buffer and still take calls and make appointments if Rachel is enduring a particularly foggy or difficult day. I also make judgement calls on whether Rachel is up to a particular task – a trip out, for example – if she is finding it difficult to make a decision.
But more and more she is taking the initiative. A good indication of how things have changed came when her brother Simon recently got married.
Half way through what was a hugely enjoyable day, Rachel sat next to me to have a rest and asked: “How am I doing?” This was significant as we had not been joined at the hip during the day and Rachel had been fulfilling a photography role that her brother and new sister-in-law had asked her to do – on her own, away from me, enjoying meeting new people and taking photographs of the big day.
I answered her question with a hug and a little while later she disappeared again to take a few more photographs before returning for another rest. We were the last to leave the wedding party – apart from the bride and groom – and an exhausted Rachel spent the next week or so recovering. But it was worth it. And for the majority of people at the wedding I was simply Rachel’s husband, not her carer.
So I’ve happily resigned my role as gatekeeper and concentrated more on the important stuff – husband, friend and carer (in no particular order).