My Legs Don’t Work Properly — Part 4: The End of The Beginning?

Part 1, Part 2 and Part 3 might be worth a read if this is all news to you. Part 5 follows this update.

This last week or so has been rather interesting and dramatic in lots of small ways.

Sensation in my abdomen and legs is perceptually much improved. I’ll know for certain how much better it is if we do another proper perception diagnostic test this week, but I just know there is more feeling there, with the left leg having almost as much sensation as normal down most of it (the toes are still some way from being quite there yet).

I am using the wheelchair less and less whilst on the unit, only opting for it when tired, or when heading off the unit. My walking is now less “over the frame”, and now more fluid, easy and a little less stammered. It’s still flat footed and my right leg proprioception is not great, but it’s considerably better than a week ago.

This week I got the point where I am able to stand and sit from a surface 16 inches above the floor without the need of rails. This is important. Why? A standard toilet seat is 16 inches high. This means I can use a toilet, unaided, and without equipment, just like I could before. This is a tick on the “getting out of hospital” list.

My balance and stamina is still not great. I am now working on dynamic and static balance exercises and slowly building up stamina. It’s getting better but realistically it could be months before it’s back to where it was. The main thing they’d like to see me do is have a wash and get dressed — including putting trousers on — without having to sit down. That is not quite there yet (particularly the trousers on whilst standing), but again, it’s way closer than it was a week ago.

I am now approximately 10kgs lighter than I was in February. That’s about 22lbs or just over a stone and a half in old money. I no longer smoke. They have confirmed I am not Type II diabetic. Despite slightly high cholesterol and blood pressure — both being addressed with “lifestyle changes” for now — the doctors are generally happy with my health and continued improvement.

The psoriasis that I suffer from without much irritation was originally thought to be a possible way strep-B got into my blood stream. Not according to the dermatology team. It seems that is a symptom of strep-B, not a cause.

This suggests that the infection that got me may have been in my blood stream for perhaps up to 2 years which was the first time I noticed a small plaque on my knee. That’s an odd thought. For those of you who have interacted with me in that time who are now worried: it’s not infectious, but if you have strep throat, for the love of God, get it seen to either way.

Whilst originally the plan was for me to leave May 31st, it’s now increasingly looking like I’ll be home 1–2 weeks before that date. That will be lovely.

This weekend brought two extra lovely moments. The first was that I managed to actually get out of the hospital and go and watch some horse racing with a pint — my normal Saturday routine.

As I wrote on Facebook when I first saw this photo:

I’m in a [slightly] crap community hall apparently gatecrashing a 60th, necking a Guinness and trying to get a bet on with my phone for my mate who has left a bundle of notes — including a clearly visible £50 — on the side, flashing my hospital patient ID wrist bands whilst in an NHS wheelchair.

This might be the classiest photo of me that has ever existed.

Wel, the Guinness was good, as was the Guineas (I had Churchill in the 2,000 and Whisper the next day in the 1,000 — thanks for asking), so that was lovely.

And then on Sunday my work colleagues decided to surprise me. Four of them showed up with a box they initially told me was full of tech books from the office library — a sorry shelf of outdated nonsense we need to clear out — and I believed them for a moment as I pulled out an ancient text on concurrency in Java and the Evans Domain Driven Design book (now considered a little dated).

Along with a package passed to me by the missus for part of her and her mum’s contribution towards the package, the true intent was revealed: under the books was a Nintendo Switch and a copy of Mario Kart 8.

I have wanted a Switch since it was announced. I put it off at launch because we have a wedding we’re meant to be saving for, and I was paying down some credit card debt.

Last week I ummed and ahhed some more knowing that Mario Kart was being released — a game I have a very soft spot for — and I considered once again my options. Becca told me to hold off, which I now know was a ruse to delay and not upset this surprise: my colleagues had clubbed together and between them had got me a Switch and Mario Kart. Becca and her Mum have Zelda and some steering wheels for MK8 on the way, too.

MK8 is an awesome game — perhaps one the best racing game I’ve ever played — and the Switch is an amazing little platform, really. I am a very lucky and humbled man, and this has definitely lifted the mood.

All of this is starting to look up then. It seems that the beginning of therapy is coming to an end within weeks. Home and occasional trips out are in my near future. I am planning to return to work remotely whether at home or in the unit on at least a part time basis in the next week or so — this week I’m working on side projects to assess whether my energy levels can handle it — and I suspect that by July I’ll be using little more than a walking stick to move around if progress continues at this rate.

It’s timely then that I am starting to plan for the future.

Some of it is quite small scale stuff that still needs thought: I won’t make an event at Manchester City FC this weekend, but we have events to go to in June I think I will make, but might need to make some changes to accommodate them. We have a friends’ wedding to attend in July, which I hope to attend with the minimum of fuss.

Some of them are medium term plans with possible big long-term impact. I don’t smoke any more. I plan to drink less. I am already giving less of a damn about things that once infuriated me. I hope to have better perspective on what’s important in life.

Other plans are a little bigger in ambition. I’ve had a lot of time to reflect and think about where I want to be in a few years time, and to look back at the failed plans of the last decade and think about what went wrong. There will be lifestyle changes, and my attitude to how I want to spend my days has shifted. I have some interesting ideas for projects I want to work on that will benefit me and those I love in the longer term, but I’ve had such plans before: only time will tell if this shock has sufficiently shaken me to make the changes I need to actually act this time.

And of course, there is now going to be the charity work. Your raised eyebrow is understood — I have not been one to do charity work before — but I think it’s necessary. There are a lot of scary things that happen when your spine gets messed up, and resources are limited perhaps because it’s seen as a condition which little can be done about: it either fixes itself, or it doesn’t and that’s a shame. We can do more to help patients, to help research into spinal injuries and to raise money to put into a part of the NHS which is very expensive to run and often the hardest to justify spending on at times. So, I don’t know what that looks like, but I’m going to be doing some stuff there.

I expect this post is going to be the last update on this subject until I get home. Thank you for all your reads, comments, and support, both here an in email, social media, text messages, etc., it’s meant a lot to me, and has definitely helped me and Becca through some pretty scary times. You’re all awesome, and I am proud to have you as a friend, colleagues, acquaintance or stranger who has taken an interest.