I love every minute of being Rachel’s husband, friend and lover.
I’ve even started to come to terms with my role as her carer.
There is no doubt that I am still on a learning curve with all four roles, one steeper than the others.
Yet I think I might have unknowingly added a fifth role – gatekeeper.
Spending so long with Rachel – working mainly from home means we’re together as close to 24/7 as you can get – I have become the go-between for her and the rest of the world.
I didn’t mean to take on this role, it is one I’ve assumed out of necessity. Rachel has relied on me to help her deal with the “stuff” that life inevitably throws at you.
Sometimes this is 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.
Unfortunately, due to the nature of Rachel’s illness, it is likely I’ll have to keep on doing it – its crap, but then so is CFS.
I’m more than happy to act as this buffer. The problem is we might have got stuck into a routine where I become a barrier, rather than a buffer.
So even though Rachel’s health has improved ever so slightly in recent weeks and she’s started to think about doing more, I still seem to be acting as gatekeeper.
We came to this realisation after a chat on a long lazy Saturday. I still want and from time to time will still need to act as a buffer between Rachel and everything else, but I don’t need to be quite so ordered and officious about it.
These are things I do as husband, friend and carer, I don’t need the jobsworth attitude of a gatekeeper in order to do them. By the end of the conversation we’d agreed we need to break the routine and a short holiday was in order, part of the problem is being largely confined to our house.
Within 24 hours our break was all booked – ain’t the internet marvellous?
So we’re heading northwards (sorry, U). We’ve planned a stop-over at the Yorkshire Sculpture Park before heading to a cottage in County Durham for a week and will then be heading back with an overnight stop at Hebdon Bridge.
There are plans for plenty of “fun” writing (for me) and drawing, painting and photography for Rachel. Rest and relaxation will also feature heavily.
Then it is back home, to what? The same routine?
Hopefully not. We need to change and shake things up a bit.
As much as I enjoy working from home, I’m starting to feel slightly dislocated with the rest of the working world.
This disconnection needs to be repaired. I need to get out more.
So does Rachel, not with me but with others – father, mother, brothers, friends, neighbours. And when she does go out without me, I need to learn how to relax and not get anxious about how she’s doing.
I remember reading, some years ago now, an interview with a carer who likened her life to being under house arrest.
I can now understand how some carers and the people they help to look after might begin to feel that, although I’m not sure I’ve felt it myself. I still think my unwelcome role has been gatekeeper, rather than jailer.
But it clearly can be, and often is, an issue that needs to be addressed by those in our position.
So I’m resigning my position of gatekeeper forthwith and with immediate effect. I can act as this buffer zone, without making it into such a chore for myself, Rachel and others.
I need to concentrate more on the important stuff – husband, friend, lover and carer (in no particular order).