My latest column for the ME Association’s magazine on life as a carer for someone with ME/CFS has arrived through letterboxes around the country.
We have experienced role reversal in the Groves household this winter and learned some valuable lessons along the way.
Such role reversal is nothing new to us. Rachel has always been the more practical, DIY-friendly one around the house, while I’ve taken charge of food shopping and cooking pretty much from the day we started living together.
But this latest reversal was a bit more unexpected as in early December – and for the second time in three months – I was laid low by a rather nasty virus.
It got to the point that, for at least 24 hours, I was the one being cared for by Rachel.
And this time it was Rachel getting annoyed with me as I constantly apologised for being ill.
Saying sorry for being ill is something that seemingly comes easily to us both. I still bristle when Rachel apologises for having ME/CFS, as if she had any say in the matter!
Equally, Rachel voiced her disapproval as I continually apologised for being struck down by a virus.
As the virus hit me hard my ability to continue the caring role I’ve been doing for Rachel for the last five years or so was severely impaired. This wasn’t an easy or comfortable situation for either of us. For me, the grotty symptoms I was suffering were combined with a massive feeling of guilt that I was effectively forced to put my feet up and do nothing whilst Rachel took care of me and the house.
As much as I wanted to carry on regardless, however, the simple truth was I couldn’t. The feelings of helplessness and dependency on someone else were not easy to accept.
Thankfully, the virus subsided. More importantly, apart from a brief bout of nausea, Rachel largely escaped infection.
It also didn’t impact on our Christmas celebrations and our desire to enjoy as much time with family and friends as possible. It might have been a grim start to December, but we saw in the New Year with big smiles once again.
Yet it does still worry me that I can be put out of action so quickly and easily. We were able to cope and thanks to Rachel’s brother and his wife we had provisions delivered – as well as further offers of help from our fantastic neighbours.
It is unusual for me to be hit in such rapid succession by bouts of illness, so maybe there is something in the NHS survey that came out in December which suggests half of carers in England have health problems as a result of their duties.
Certainly incidents of tiredness and irritability identified in the survey are familiar to me, although I’ll admit I’ve always been a grumpy old so-and-so.
Abdicating my carer role, no matter how ill I felt, wasn’t easy. Despite being unable to lift my head upright off the sofa at one point, I had to stop myself from shuffling out to the kitchen to make Rachel another cup of tea.
It is an example of the bloody-mindedness and maybe even the siege mentality a few other carers I am in contact with online (via Twitter and Facebook) have identified during various discussions about our caring roles. Our first instinct is to carry on regardless and say nothing, even if our bodies are screaming at us to stop.
I am not for one minute suggesting I have gained an insight into the way Rachel feels with ME/CFS. The malfunctioning body, the dependence on others, the feeling of being trapped at home unable or unwilling to venture out were temporary for me, whereas Rachel continues to live with them on a daily basis.
But it was a sobering few days for me all the same and one I certainly don’t want to repeat for all sorts of reasons.
There was one other important lesson – sorry really is one of the hardest words to stop yourself from saying when you’re ill and having to rely on someone else.