(My latest column for the ME Association’s magazine on life as a carer for someone with ME/CFS)
Our lives are often governed by routines, even those of us who like to think we are a free spirit.
From starting the day with the same cuppa, leaving for work at the same time every morning, taking the same route and opting for a favoured parking spot, to the way we manage our working and home lives, our little routines and regimes are a central part of our lives.
But for those suffering with a long-term, chronic illness such as ME/CFS – and those of us who care for them – routines are often vitally important.
Since she originally fell ill, Rachel and I have adapted our lifestyle and the way we do things, inevitably slipping into set routines.
They tend to be quite uniform and rigid, although there is also an in-built degree of flexibility due to the unpredictability of this illness. Rachel can go to bed feeling good and wake up having taken several steps backward and finding it difficult to make it out of bed, let alone downstairs.
One of the most obvious and important revolves around my career. I’ve juggled full-time work and my caring responsibilities for more than five years, sometimes successfully and at other times more by luck than judgement.
Initially, the routine was fairly straight forward as I was self-employed and could work the majority of my week at home. Mixing work with caring was comparatively easy and the routines we developed were quite adaptable, not least because I might need to work away or leave early one morning.
However, we needed to drastically rethink such routines – such as making sure Rachel enjoys sufficient sleep, providing breakfast when she was ready, helping her relocate from the bedroom down to the living room and so on – once I took up a full-time role in an office.
The fact the office was a 15-minute walk from home helped as I didn’t have to face a gruelling commute and I was able to return home if and when I was required. I was also able to work from when I needed to, an option it was also useful to have in reserve if needed.
Those routines embedded over the course of a little under three years, but we were required to undergo another rethink last July. I was made redundant and switched back to self-employment and mainly home-based work.
The adjustment felt quite easy for me, but Rachel took a lot longer to adapt to the fact I was home a lot more often. She had become more independent and self-reliant whilst I was working in an office and my availability actually caused a bit of negative upheaval as I started to disrupt the routines she had become used to and which, most important of all, worked for her.
It isn’t easy for someone with ME/CFS, who has become used to attempting certain things on their own or simply doing without, to suddenly have assistance on tap again.
Now we have to switch routines again. Four months after becoming self-employed, I was offered a job opportunity that was too good to pass up.
It will not, however, be a case of moving seamlessly back into the routines we had the last time I was office-based. For a start, this time I have a 40-minute commute each morning so I leave earlier in the morning.
The new routines are still bedding in. Rachel is taking times to adapt and fine tuning various regimes.
I am adapting too and still learning new ways and routines, such as the geographical distance between us – a 40-minute drive isn’t arduous, but can feel like the other side of the planet if Rachel is struggling or having a ME/CFS flare up.
Obviously all these changes cause disruption to our home life and that will, in turn, have a knock-on effect for Rachel as she copes with her illness. There are times when I think it would be easier for us both if I concentrated on caring rather than my career.
It is important for us both that I continue to juggle my career and my caring role, however, not simply because of the financial implications. If I’m happy doing a job that I love then that has a hugely positive impact on us and our life.
But that juggling act is only possible because of the routines we develop, adapt and embrace.
It would be great to feel like a free spirit. But the reality is that without such routines and regimens, life with ME/CFS and as a carer would be practically impossible.