The new decade: Week One

In the last few days of 2019, my social media was flooded with reflections on the finishing decade. Having spent the last two and a half years in a bit of a struggle, my own reflections were a bit mixed. I have gained two totally awesome boys, a husband who has survived over a decade with me, a lovely home, and a job I love. But I also gained, and then lost, a job and a home (and an identity) that I adored, thanks to a genetic condition that I knew nothing about. Swings and roundabouts, eh?! I did manage to do #NoNew19 with only a pair of new pjs and a 50% reduced new concert dress, but that was more by not buying anything for myself than by finding alternative methods of shopping. I think I’ll save that particular reflection for another day, though I don’t think I’ll be chalking it up to a major achievement...

Anyway, I started the new decade with mixed thoughts, but really wanted to focus on a positive. Enter my admission to the inpatient rehabilitation course at the RNOH at Stanmore, a three week Monday-Friday intensive hospital-based programme that is focused on helping wonky dudes like me with improving management of chronic conditions in the long term. I spent my Christmas holidays planning the three weeks worth of schoolwork that I needed to leave behind for all my lovely colleagues who are covering for me, so at least I’m not trying to keep on top of that too. In fact, I didn’t really manage to focus on it until the day before, in trying to get everything else ready!

Today is Day 4 of the programme and already I have been pushed outside my comfort zone, which is excellent, especially since it is by informed professionals who totally get EDS and PoTS and chronic pain in general. By being inpatients, we are able to have 1:1 sessions with a personalised team comprising physio, OTs, and psychologist. Seeing the physio on both Tuesday and Wednesday meant immediate feedback with regards to exercises and activities, which just can’t happen in other situations. It also means that instead of being given a load of “homework”, as my physio refers to it, you are given one or two aspects to focus on, which is more sustainable. My first individual session was a gentle fact-finding mission, my second was rather more brutal!

We start each day with “mindful movement”, which is half an hour of gently stretching out in different ways in a variety of styles. So far it has been sat down in a regular chair, which just goes to show how much you can do in a seated position. We’ve had talks on all sorts of different aspects that relate to chronic pain conditions, all from specialists in the three main areas. It isn’t easy to discuss the impact of pain on mental health, or relationships, or self-image, but we are being carefully guided by a brilliant team. Pacing is constantly being referred to, and is part of the reason for this being such an extensive programme. It’s hydrotherapy later today, which I’m looking forward to, as well as a goal-setting session with my OT where she and I will plan out focus points for when I’m let loose on the world over the weekend.

What I love is that we’re not being treated like hopeless cases, which is sometimes how you feel when you’re just trying to get from one working day to the next whilst frequently at breaking point. Everything is goal orientated, and those goals are looked at from all angles by the 1:1 team who all actually talk to each other! My psychologist read through my goals and quickly drilled into negative self-image which, I had to acknowledge, is quite a big part of me. Apparently I should be writing more about it, but that’s enough for the public sphere! I had one session with my physio where she worked out that I’m holding too much tension and set me up a session with the OT team on progressive muscle relaxation the next day. I think that’s pretty cool. 

I’ll admit that I was worried about sleeping on a ward with complete strangers for such an extensive stay. However, it’s safe to say that this isn’t like any other hospital stay I’ve ever had! On the female side, as well as the four of us on the pain rehab course, there are four others in for a 2-week shoulder rehab (there are also three chaps on the other side). The eight women on our ward are getting on really well, and have been swapping top tips for heat pads, easy-wear swimwear, pain support websites, and all sorts of other more frivolous matters. We’ve had a good laugh together (and not just because it is good for you!), we’ve shared our hospital-food-surviving snacks, and one of the girls even lent me her daughter’s charger so that I could put some more juice in my headphones. Yes, we hurt, we get tired, we get cross, but because we all feel that way it is easier both to be honest, and to have a giggle without feeling judged. We’re all being challenged in so many different aspects that it’s easy to discuss some of the biggest sticking points in chronic living with honesty, with compassion, and with some humour too. It doesn’t feel like 3 days since we met - we know all about each others’ lives, bodies, minds, and everything else in between!

I’m sure it goes without saying that I miss my family and friends, home cooking, my bath, my bed, and I feel guilty for the amount of extra work I have caused to my colleagues at school. It is very hard to switch off from life outside the hospital gates, but this is a special programme to be given a place on and I really want to make the most of it. I didn’t expect to spend yesterday afternoon playing catch and doing a Wii-Sports-like VR challenge involving squats - my body certainly didn’t - but I’m up for trying whatever is in store for us! Watch this space...