Rehab: Brutal as well as brilliant

And in a flash, but also a lifetime, it ends. I’d been trying to write another blog post over the course of Week 3, but a flare-up and a lot of demons to work through meant that it has taken me much longer to put this into something publishable. I can’t manage 100% honesty about the difficulties that I have had during the programme. (I probably won’t even manage 50% - there is only so much that I can face saying in the public sphere.) I’m going to pick a few of the main things that have been a struggle for me, and save further reflections for another weekend.

It turns out that, in my first two posts, I did a good job of pointing out all the positives of the inpatient rehab programme at RNOH Stanmore, but that I rather swept the more challenging aspects under my nice adjustable hospital bed. In the interests of full disclosure, and given that I am trying to paint a realistic picture of the demands of Wonky Bootcamp, I suppose it would be wrong to avoid reflecting on my harder days as well. This course really does focus on all parts of life with chronic illness, and it has hit us all in different ways. We are pushed out of our comfort zones in so many different areas that I don’t think it is possible to avoid poking at some difficult topics. It is also a programme where we know that we are not coming to be “cured”, but to learn to live the life that we have, and to try to find areas of improvement. This means that I had to talk about changes that, especially to me, seem like backwards steps, but are just about being realistic about my conditions, my pain, my fatigue, and the need to survive from day to day. That isn’t exactly a barrel of laughs. It isn’t a proud achievement for when you’ve taken three weeks off work and feel you should have something to show for it.

You don’t want to do a session of ‘Nordic Walking’ with special disability-friendly poles, cope through it because you need to feel like you can, and then have to admit to your physio the next day that your pelvis screamed at you all afternoon. What this invariably leads to is a conversation about finding different crutches, rather than about buying walking poles. Nor do you want to be given exercises for shoulder strengthening primarily because you need to continue to use crutches. Missing a whole session of physio exercises through overdoing things the previous day is also particularly gut-wrenching, even if your (absolutely lovely!) physiotherapist keeps reminding you that you’ve spent the session talking through all sorts of useful strategies. And this is where learning to live with chronic illness while being a self-critical perfectionist gets, erm, a bit tricky. Failure and I are not exactly at ease.

All I want to do is to make progress, to “be the best”, and therefore it is so very difficult to moderate and lower one’s personal expectations. I should have learned to do it by Week 3, I know - I don’t think the team could have done any more to support us with this - but by wanting to make progress in each and every session, I pushed myself to keep asking for new exercises instead of sometimes admitting a high pain or fatigue level. My physio, of course, knew exactly what my body would be able to handle, but even accepting that was hard. Who wants to be told that you can do a (carefully modified) press-up, but to start with just one or two? And that you can do it against the kitchen counter if you can’t get to the floor (or know you wouldn’t get back up again!). I love that I have a wide range of exercises to do for each level of mobility and pain, and that they are tried, tested, and checked ready for the next three months of experimentation, but I still felt as though I was failing her.

This leads directly into my struggles with the conclusion of the programme. The primary focus of the last few days is to set your goals for the next three months (at which point there is a follow-up appointment). These are carefully constructed using a “GAS” (Goal Attainment Scaling) framework that involves you analysing what you’d like to achieve, and give incremental expectations so that you can set realistic and achievable goals. However, it seems that this pushes well above my acceptance limit. The crux of it is that I haven’t finished grieving for my old normal, and I faced fresh waves wash over me and threaten to overwhelm the entire experience. Accepting that the only goals I might actually manage would inevitably disappoint me has not been easy. My physio and OT had already recognised that I would find this particularly difficult, having seen me struggle to take pride in previous insignificant achievements. In the end we stuck to safe physical goals that will hopefully bring incremental benefits to my strength, stamina, and our family life. I was beautifully supported by a team who were far kinder to me than I deserved, guiding me through each goal after gently pointing out that my original list was more for the “hopeful 2-3 year plan”.

The fact that I was struggling through a flare-up should have highlighted my limitations on a bad day, but in actuality it was just frustrating to have to navigate through extra pain, fatigue, and brain fog. I do my very best to work through my flare-ups, trying to scale back what I do and pace through them so that I recover faster, but I couldn’t bring myself to admit that I needed to take a step back as I was so desperate not to waste precious time with the fabulous RNOH team. I should have known that it would inevitably end in a worse flare than if I had been more careful sooner, and ended up inadvertently drawing attention to myself because the PoTS symptoms went a bit crazy after our final hydro session. This only served to highlight that I definitely need to go back to the work we did in our ‘Foiling a Flare-Up’ session and stop trying to pretend that stubbornness will get me through! Yes, we had learned this lesson. I had even taught some of the others about Spoon Theory. I am just not very good with failure, and tried to hide the flare rather than deal with it.

In many ways, it is not that I haven’t accepted my condition for what it is. It is more that I don’t want to be complacent about my situation, about the fact that the symptoms associated with hEDS fluctuate. I learned a couple of years ago that you can’t always stop a downwards shift in health, but I would like to do all that I can to make myself as strong and as prepared as possible for whatever may be thrown my way over the coming years. This is the reason that I have spent the last three weeks at hospital, after all! To be in a place where everyone is so in tune with your conditions is rare for us EDS zebras, and I felt incredibly privileged to have a place on the course. It is also the reason why it is so hard to pace at the programme - you want to sponge up every last ounce of knowledge that the team can impart, to try out every piece of equipment or technique suggested all in one go. I have to accept that my three weeks on the programme are just the start of this particular journey and to start learning to build new habits into old routines. Rehab was a safe bubble where disability felt normal and pain was an acceptable topic of conversation, but reality is… a bit too huge right now! Thank goodness for home, for family, and for special friends.