Chapter 18: Broadening my horizons … and coming to the end of the road

If I had to pick a single point when things went pear shaped, it would probably be the evening of Sunday June 27th.

On the spur of the moment, I decided to make the drive to Banbury station – an 87 mile round trip, as it turned out – for no other reason than to see if I could.

My logic seemed pretty sound at the time – well, to me at least. In just less than 4 weeks, my sons were off on a trip up north to visit their cousins. Their journey would take them from Banbury to Darlington by train, so I wanted to practice the drive involved in getting them to their starting point in order to reassure myself – and my family – that I was going to be able to manage it.

The drive went well. I popped on some familiar tunes and cruised all the way there and back with no noticeable adverse effects from a cognitive perspective. I found the whole experience quite relaxing – indeed, I would even go so far as to say that I enjoyed it. There were some minor tingling sensations below the waist, but nothing out of the ordinary – the equivalent for me of having played a relatively complex board game for around 30 minutes or so, but without the cognitive deterioration that would have accompanied such an activity.

I felt elated.

Perhaps I had found my “thing”? That is to say, the useful thing that I could do without experiencing undue cognitive fatigue. After all, cycling short distances slowly and writing about having a brain injury are really not that useful.

I slept fitfully that night – to be expected, I thought, after such a monumental achievement.

The next day, I elected to drive my eldest son to college rather than him getting the bus. It was exam week, which meant that he was not working to his usual timetable, so I had offered to pick him up and drop him off each day so that he could make best use of his time for revision purposes.

When I got back I felt exhausted – not at all in line with my previous experience after driving – so I rested immediately. After a while I decided to exercise in order to benefit from the cognitive recharge effect. I didn’t feel sufficiently in control of my legs to ride my bike, so I elected to go on the treadmill. It wasn’t my finest performance – it took me a while to get my legs coordinated and find a rhythm – but it had the desired effect, enabling me to push on with the rest of my day – vacuuming followed by lunch and a nap, picking my son up from college, then making dinner.

On Tuesday, my son had no exams, so I took the opportunity to recharge cognitively by riding my bike over to the doctors to collect my prescription. I barely made it back. My right calf was still tight from running, causing me to lean on my weaker right thigh in order to make it up the final incline to get home.

By the end of Wednesday, having dropped off my son mid morning and picked him up again around lunchtime, I was physically broken – despite having undertaken no exercise whatsoever. The full-up feeling that I often experience in my legs had made it all the way up to my shoulder blades, with every single muscle in my right side feeling like it was completely shredded – a constant tingling sensation like the muscles were trying to shrivel up and recoil from whatever it was I had been putting them through.

Cognitively, I felt ok. I was fatiguing more easily than usual, but I put that down to other factors – a busier social calendar in recent weeks, the excitement of watching England’s progression in the Euros, making a shepherd’s pie for dinner – all known contributors to my levels of cognitive fatigue. But by resting / exercising prior to driving, I could always get myself to a state where I felt fit to drive.

Two weeks on, large parts of which had been spent with the muscles in my right leg either being inflamed and feeling like jelly or stiffened up and hard as a rock, I had to accept that there was something else going on. This was not something that I had experienced before – not to this extent, at least.

I had reduced my driving back down to its previous level but was spending increasing amounts of time laying down and resting so that the full-up feeling in my right side would subside a little. The only thing that reduced the sensation was cycling – either indoors or out – but then it would come back again within 30 minutes or so. When it got to the point where reading and watching Bargain Hunt – things that I usually do to wind my brain down – were actually causing the sensation to rise up, I knew that I had to make some more drastic changes.

After a further week spent on light duties, with strictly no driving, there had been some minor improvements to the sensation in my right side, with the tingling now oscillating between upper thigh and waist, albeit with marked signs of weakness. My ability to control my legs was limited – with the sensation that they were doing their own thing somewhere underneath me, with mixed results.

The day of departure had arrived, but I was in no fit state to make the trip. Reading was now less of a challenge, but anything beyond that was still aggravating the sensation and tasks that I would not normally find too challenging – such as making a dinner of sausages, jacket potato and cheesy beans – were proving highly fatiguing for my brain.

So, in the end, my wife took responsibility for dropping our boys off at the train station – one more local to us that involved a connecting train to reach Banbury, then a 1.5 hour wait. Not ideal for anyone involved, though the right decision under the circumstances.

The following weekend was spent on my own, doing as little as possible. With the boys away, my wife had arranged to go camping with a friend – a cheap form of respite care for all parties. By following a strict regime of bathing, stretching and massage, the sensations below my waist gradually returned.

Come Monday things had taken a turn for the worse again. Having walked the dog 3 days in a row over the weekend, then unpacked the fortnightly shopping delivery on Monday morning, my right leg felt significantly shorter than my left, with my back and legs feeling completely out of kilter – my left hip feeling overworked yet my right thigh being particularly swollen. Time for yet another bath!

That afternoon, after napping, I attempted my usual monthly ride to the doctors – my first ride in a week. This time, there was no power in my left leg either – even less than the right, in fact. For the first time in 196 attempts I had to get off going up the final climb to home – the shame of it!

At this stage, I was starting to panic. It was now July 26th – 4 weeks on from that initial tingling sensation following my long drive – and my physical condition had deteriorated significantly. My left leg looked withered and by the end of the next day, despite doing virtually nothing, my right leg was inflamed again.

Sitting back from things, I started to formulate a theory as to what was going on. My best guess was that I had dug myself into a hole cognitively by driving too much, then tried to exercise my way out of it – something that had worked for me in the past. But this time, because my brain was so fatigued, when I did exercise – or indeed do anything involving my legs such as walking the dog, vacuuming or even just weeding – I was leaning too much on my right side because I couldn’t feel it doing anything. Remember “Pusher Syndrome” (see chapter 7)? So the swelling and locking up of the muscles in my right leg was down to overuse – the corollary of which had been under use of my left leg.

Regardless of the reasons, I was most definitely in a hole – but how to get out? I had stopped digging (driving) but had wrecked myself physically to such a degree that I could no longer turn to my usual means of escape (exercise). I was just going to have to wait it out.

Thankfully, around this time I had my regular 2-monthly call with my occupational therapist. She advised me that I was overdoing the stretching – apparently the brain has a tendency to try to shorten the muscles if it feels they are being stretched too far, so I was most likely doing more harm than good. She also told me that even a short walk of around 30 minutes was too much at this stage and that 10 minutes at a time should be my maximum to allow the muscle tone in my right leg to return to something closer to normal.

It wasn’t until August 12th – nearly 7 full weeks after that ill-considered drive to Banbury – that I was able to successfully take the dog on a normal walk without experiencing some kind of adverse reaction in my legs.

In the end, it was that old faithful – the indoor trainer – that got me back on my feet. Initially, I tried short walks, but my balance issues combined with the imbalance in leg strength that I had created meant that I was always leaning to one side or the other. I even tried running on the treadmill – quite literally trying to run before I could walk – but perhaps unsurprisingly I encountered the same problem there. But by setting up the indoor trainer opposite a glass door and riding “hands free”, I was able to look at my reflection to monitor how I was using my legs and moderate the effort between them accordingly. After 4 consecutive days of gentle riding for around 30 minutes at a time I had rebalanced myself sufficiently that my walking action was back to normal.

The intervening period had been something of a rollercoaster, with symptoms including headaches, insomnia, urinating more frequently with a marked change in colour and some discomfort, feeling thirsty all the time, feeling manic with a craving for sugary foods, plus physical exhaustion. So very much like a hangover, but without having consumed any alcohol beforehand.

Although these are all symptoms that I experience after over exerting my brain – say after a big social event, where I have interacted with people for an extended period – they only normally last for a few days at most, whereas this had been nearly 3 weeks.

Consequently, it would be fair to say that I was in full on panic mode by the end of the second week – so much so that I had spoken to the doctor who had booked me in for a blood test and also referred me back to the neurologist due to the heightened tingling sensation and loss of strength in my legs.

When the doctor asked how I was feeling, the best description I could give was that I just wanted to be switched off for a week so that I could rest and recharge. As luck would have it, not long after I got my wish, in a manner of speaking.

The blood test came back as “normal” – whatever that means – and so I have had the very good fortune to spend the last 2 weeks of August in Crete.

The journey out was challenging – I’m sure your heart bleeds for me! – with my legs deciding to go AWOL during the check-in process. Based on past experience, my wife had asked for special assistance which made things significantly easier and I at least did the honourable thing by accepting the offer of a ride to the departure gate. Not my proudest moment, but needs must.

Once there, it took a few days for my brain to settle down and my legs to come back to me but after about a week I would say that I was firing on all cylinders, even managing to win a few games after dinner each evening – a marked change from the first week, despite my protestations at the time that I was feeling sharp enough to play.

Of course, during this time I threw myself wholeheartedly into physical pursuits in order to try to speed up the cognitive recharge process. This time, instead of my right leg it was my right shoulder and upper back that I overworked by swimming too much. I am nothing if not predictable!

Nevertheless, the holiday has been just what the doctor ordered – perhaps I will see if I can get one on prescription? – and I have come back feeling rested and recharged.

So much so, in fact, that for 6 consecutive days at the start of September I was able to walk the dog and drive each day with only minimal cognitive or physical impairment, dropping off and picking up one or both of my sons at various local destinations whilst my wife has been busy with work. I even managed a foray out on my bike on the first day to collect my prescription from the doctors, making it home without having to climb off.

It’s a miracle – I’m cured! Or so I thought at the time.

On the 7th day, the wheels came off. Having taken my eldest son to college, I made another trip to the doctors on my bike to collect a different prescription – some new medication that I had been taking for the last month to help me sleep, which had been doing the job nicely – but this time I had to bail out on the final climb to home. Or rather I chose to as I could feel that my legs weren’t up to it, thus saving myself several days of recovery time – perhaps I am learning?

Despite this prescience on my part, I didn’t see the signs for what they were and continued to drive and walk the dog for an 8th consecutive day.

The thing that stopped me in my tracks this time was a trip to the shop across the road. I was sent to buy more than my usual 1 item (sausages) – how unreasonable! – requiring me to interact with the shopkeeper to find what I was looking for. On my return, the tingling sensation in my legs was back with a vengeance – seemingly out of nowhere – and I had to go for a lay down for an hour or so, followed by a 30 minute spin on the indoor trainer to make it go away.

The next 24 hours were spent feeling pretty manic, with thirst and a craving for sugary foods also making a return. With hindsight, these feelings had started a few days previously. A definite trend was starting to emerge.

I took a step back from driving over this period and by the next morning I was feeling like my old self again. It seemed that I had managed to catch it early this time. I walked the dog and undertook pick up duties for the next 2 days up until the weekend, but by the end of that second day the first signs of tingling were beginning to reappear.

By now, even I was starting to get the picture.

So what are the lessons to be learned from all this?

For a while there, I thought it was going to be that driving is not my “thing” after all, then maybe that it was. The truth is somewhere in between.

Driving is most definitely a bear, albeit one that creeps up on you slowly, gradually gnawing away at your legs without you realising. A bear in sheep’s clothing perhaps, since the costs tend to be incurred after the fact rather than during. So it is not a bear that should be avoided completely, but one to embrace with caution – not too often or for too long.

You might well be thinking that this was something I ought to have known already and that this latest episode has been a waste of time and resources.

That was certainly my view as I languished in a state of physical and cognitive fatigue prior to getting away on holiday. I have been pretty angry with myself for making life harder than it needed to be – both for myself and those around me.

But as I have been putting the finishing touches to this piece over the last few days, I have started to think that perhaps I have done myself a favour.

Over the last 6 weeks or so, since my “walk of shame” when I had to get off my bike for the first time, for a variety of reasons I have been forced to do pretty much nothing. This is not something that I would ever have done out of choice.

Along with the new medication I have been taking, this has allowed me an opportunity to reset and take stock of my situation.

In so doing, I have come to recognise how much resource – cognitive and physical – I had been using up on unnecessary tasks. Resource that I now realise can be put to better use elsewhere.

And so it is that I have made the momentous decision to hang up my wheels. My days in the saddle are over.

Truth be told, it’s a decision that’s been coming for a while now. The joy that I get from cycling has gradually dissipated – the weakness in my right side means that the feelings are just not the same as they used to be.

Consequently, I have long since given up on riding just for the sake of it. Instead, I had lapsed back into the mode of creating reasons to get out on my bike – like buying fresh fruit and veg – so that I could continue to get the cognitive recharge effect (and avoid doing the vacuuming!). So over time, I suspect that cycling has become a net cost rather than a benefit – the resources required to perform the task at the end of the ride outweighing the recharge effect of the ride itself.

All things considered, it’s a cost / benefit equation that just doesn’t stack up anymore.

I can be far more useful as a driver than as a cyclist, plus I can still get the cognitive benefits of cycling from riding the indoor trainer, without risking doing myself a mischief physically.

Indeed, I probably get a better workout from being able to ride in a more balanced / measured way – what with there being no hills to tempt me into pushing too hard.

It appears then that I have come to the end of the road, on my bike at least.

Maybe this was the aspect of “moving on” that I had been struggling to come to terms with?

But rather than being the end of something, I prefer to look at it as the beginning of something new – an opportunity to move forward in a different direction, via different means.