I’ve written a lot over the last year about my increasing pain and decreasing energy. I’ve shared my concerns about the impact on my work, but I’ve not talked about the adjustments we’ve been making so I can keep doing the job I love.
Today I had my first meeting with the employment rehab team at the specialist hospital that takes care of me. Their role is to help people with neurological conditions make adjustments where necessary in their working life.
While my appointment was mainly focussed on collecting information they seemed impressed by the approach we’ve taken so far and the strategies we’ve put in place, so I thought I’d share some of these now in case they’re useful to anyone else:
Routine Naps – For the last six months or so I’ve been resting for two hours every afternoon. This sleep has proved crucial to my wellbeing and means I can then re-join my colleagues afterwards and make a better quality contribution. This regular rest has also given me back my evenings because I’m less exhausted when I get home.
Pacing – I first heard about the idea of pacing from Hannah Ensor, founder of Stickman Communications. Pacing is about understanding that different people have different quantities of energy, and also that different tasks can take different amounts of energy – it’s based on a way of thinking called Spoon Theory. Pacing is about mixing up different types of tasks and allowing enough time to recover from each. Planning ahead is an important part of good pacing.
Breaks – In addition to naps we also take breaks when I start to flag. I’ve come to appreciate that concentrating and using my brain takes up a similar amount of energy to doing something more physical. Regular breaks can help me focus and prevent me from getting overwhelmed by fatigue. Bursts of activity with periods of rest seem to work best for me.
Prioritising – Next year Touretteshero will be ten years old! We’ve worked hard to build up the organisation and we’re lucky to work across many different areas, whether delivering training, creating shows or holding events. Now my energy is limited I need to make some choices about what I want to focus on. This doesn’t always feel easy because I enjoy so much of what we do, but doing a smaller number of things sustainably is much better than taking on everything and burning out.
Delegating – Last week Leftwing Idiot and I had a much-needed conversation. I’d been quietly worrying about the extra work he’s been taking on because I was needing to do less. The conversation put me at ease – he explained that we’re all putting in the energy we have. He also reminded me that my support worker helps me with tasks I can’t do, and whether I’m doing it all myself or delegating tasks I’m still contributing.
Practical Interventions – In addition to making changes to our working processes, some key practical changes have helped too. Most important of these is my portable folding mat that means I can lie down in meetings which helps reduce my pain.
The process of making these changes hasn’t always been easy but together they’re improving the working environment for us all. Hopefully the additional support and advice of the team I met today will enhance what we’re already doing.
The last thing that the occupational therapist said to me today was probably one of the most important messages – she reminded me to be kind to myself. It can be easy to forget this during busy working days and get caught up in normative expectations of ‘productivity’.
I’m lucky that at Touretteshero we value people and their contributions and this makes for a healthier, happier place to work. If you’ve got any other suggestions for improving the working environment please share them in the comments below.
I feel incredibly positive about the year ahead thanks to the support and understanding of my colleagues, our partners and our incredible NHS.