My Legs Don’t Work Properly — Part 5: Home time

If you’re new to this story, parts 1, 2, 3 & 4 will bring you up to date.

And now the really hard work begins. I am no longer in hospital. A cause of mild celebration of course, but this is also the start of the hardest bit of the work to do so far: getting back to normal whilst outside of the system a little more.

I am not fully recovered. I am certainly much more mobile than I was, but walking still requires crutches, is limited to 100–150 metres at most, and steps — even small 4"-6" steps — are like miniature mountains to me.

This is all much better than even a week ago (10 metres was a lot, and steps were impossible), but it is clear I am still not back to where I was before all of this. Timelines on a full recovery are fuzzy, but goals of 6–8 weeks are being mentioned for a recovery good enough to make getting the tube to work is a possibility, and I’ve consistently beat the estimates, so fingers crossed.

That said, there are some near term adjustments that are a challenge in themselves.

If you have ever spent time as an inpatient on a hospital ward, you will notice there is a routine. Shift handovers, meals and blood pressure/heart observations conducted with an ingrained regularity. For a short period, all of this is a little intimidating, perhaps annoying. Over a prolonged period though, it becomes a comfortable blanket. Leaving hospital is harder than you’d actually think.

Firstly, in a hospital, if you have a problem, trained staff are close by. Last night whilst attempting a step up, I almost fell. Thankfully Becca was there to help and all was well, but the shock to the confidence then just seeps into the back of my mind — am I really ready to be out of the unit? I am, I know I am, but if you’d offered me my hospital bed back right then and there, I’d have taken it. That’ll pass, my confidence will grow again.

Secondly, there is the routine. We had a very free flowing routine before all this, but now breakfast is 8am and dinner is 6pm, and getting to bed earlier is better than later. We’ll find a new routine that’s less rigid over time, but the beat of a hospital rehab unit is still going to need to permeate our lives for a little while longer whilst I ween myself off the tightly controlled environment.

Part of the routine is of course the people, the catering and cleaning staff, the therapists, nurses and doctors that make up daily life in such a unit, and of course I have to say goodbye to all of that, but I may be able to volunteer some time at some point in the future — as a patient, talking to other former patients was helpful — so it could be more an au revoir, if they’ll allow me.

Lastly, the biggest difficulty I’ve faced so far is a complete fear at the back of my mind that the recovery stops now, that I’ve been discharged because this is the best I’ll get.

I know this is rubbish, rationally. But like confidence, there is always a doubting voice within.

The community physio team will be in touch in a week or two, and we’ll get on with all the good stuff that needs to be done, but there is a lack of intensity now that I no longer have a timetable of exercises. Self-discipline is going to be needed to push myself along a little.

The team that helped me get to this point were great in getting me here. I worked hard because it was obvious that they worked hard and wanted me to work hard. That’s the pinnacle of team work, really.

At times I surprised them, on more than one occasion perhaps scared them, but overall the constant feedback I was doing well and to plough on was fuel to the fire I needed to focus on my work in there.

Now I’m free to sit on my sofa and binge watch Netflix all day this weekend if I want to, or to throw myself entirely back into work as a distraction next week. Friends and family can provide encouragement, but they are not trained physios and the context would be different: it will require me to have a word with myself and do the work nobody else is going to ask me to do.

Getting up and walking. Side stepping. Balance exercises. Keep them going until the physios arrive and say stop. Keep doing the steps when and where I can. I can’t do laps any more (something that actually caused a mild panic attack in me last night as it dawned on me), but I can go for walks in the nearby park, and with Becca’s help, good weather permitting, I can continue to make strong progress.

Finding the balance of sensible progress and pushing myself recklessly is perhaps going to be the hardest problem.

When in hospital, there are reasons for not doing things as normal: you’re in hospital, after all, and some things are just not practical for where you are.

When home, those reasons might actually be just excuses. There is an expectancy in yourself and perhaps in a few others that normal service will now be restored, and a failure to do something is a choice, something you can just decide to do a different way. The truth for me, right now, is I am still some months away from being able to just choose to do whatever I want to do.

The trick is finding the right answer to an awkward question: am I not doing this thing because it is not practical for me right now, or am I making a choice? Am I doing or not doing something because I have a reason, or could I be a little bit braver and make a choice to safely push myself?

In a hospital rehab unit you can ask the question. Sometimes they’ll encourage an answer before you even thought of the question. If it doesn’t work out, well, there are doctors, nurses, equipment, backup plans. At home, more caution is needed, but that should not become an excuse for not trying. No need to be reckless, but also, no need to be lazy.

So, now more than ever, I need to remember the motto: Be Brave. Work Hard. It got me this far, who knows where it’ll take me next?