Stroke and mirrors

I have this past week spent a full day back in theatre, as staff not a patient . Long, long gone are my days of spending 8+ hours a day at an operating table. After a year of trying to find some middle ground in my role I have spent today being what I joked as ‘the queen mother’ to a complex surgical case in a speciality which I have some management responsibility for.

It got called the queen mother because I sat on a stool in the corner of an operating theatre dropping the occasional gem of knowledge, supportive word or dry humour (some things never change) and waiting for drinks to arrive seeing as I can’t carry one.

I was able to impart some wisdom across the team. The entire day I spent in there my non functional arm and hand strapped to me.

Using my working arm I did try to help on the odd occasion.

For the majority of the day I felt either in the way, surplus or envious that I couldn’t really participate. Before trudging out at the end.

It feels like a 20 year career wasted.

I had a history of being a great scrub practitioner, a fount of knowledge and willingness to do complex surgical work with complex people on complex patients, and you know what? I was bloody good at it. I won awards, I was thanked in published books, I was live streamed globally as part of a conference I helped organise.

At one point watching the team work it really hit me that my career was pretty much done. Yes we’ve adapted the role to use my knowledge but the biggest part of the role died along with that big section of my brain. I could have cried, no, I could have sobbed and screamed, theoretically I had another 30+ years ahead of me. I’d always expected to be scrubbed until the day I retired.

I could have done so much more, I was a high achiever, I feel like all that potential has been lost, squandered by ill-health as a consequence of other people’s actions.

Then as much as it makes me sad and quite bitter a little piece of me starts to think wider and think about my patients, staff, department and hospital and the impact me not being able to work clinically has had on those things.

Yes I’ll never know those hypothetical things and I know that I shouldn’t dwell on it but I feel it’s useful for me to recognise my health hasn’t just impacted me.

Sequal to follow

But I'm all in pieces, sick as all my secrets
Still now how they weigh on my mind
🎶- Still Waiting, Tim Chaplin, 2016

There’s lots of times in life where I need help: sometimes it’s little things like putting on a coat, opening a packet or buttering bread, other times it’s more significant like preparing food and driving me around.

I resent that this is how life is but here we are, as a very stubborn and independent person I sometimes find asking for help difficult. I become hyper aware that it and by extension, I, am a inconvenience for other people (their time, energy and emotion ) and if they get frustrated I find it incredibly difficult and hurtful, I’m already super critical of myself and feel embarrassed to ask all the time. So when we add more it just pains me further and I end up just not attempting things and stuck which adds frustration; there’s no good option here.

I never needed anybody’s help in any way
(Now) but now these days are gone (these days are gone)
I’m not so self assured 
(And now I find) now I find I’ve changed my mind 
And opened up the doors

🎶help – the Beatles 1965*

• I never thought I’d use a Beatles quote, but my library was low on help songs

My surgically acquired brain injury /cva / stroke (whatever you want to label it and I use all 3. Interchangeably) was May 23. Against all odds I returned to work, in a way, in march 24.

2024 brought its own challenges, especially December (link here) when cardiac wise I struggled again.

January 2025 with some strong armed brutal honesty that I sat and worked out I was committed to :

40 hours a week in work,

A voluntary role of sporadic commitment

5+ hours a week of commuting

5-10 hours a week of self led rehab in the gym

2 hours a week (on average) of health professional led rehab.

Real world things : food shops, cleaning, seeing family, going out. Plus things like life admin.

Agreeing that it was a lot for a person in good health; add a variable heart condition and continued recovery from a significant brain injury. I reluctantly agreed I was over stretching myself. My lifestyle hadn’t contributed to Decembers cardiac events but likely hadn’t helped.

With some honesty, deep reflection and compromise I’ve decided to drop a day at work and essentially go part time. I’ll be in work 3 set days a week , this means I get 2 weekday days off and I’m not trying to squash everything else into one day. I’m hoping I’ll use one day for rehab and have another as a very quiet relaxing down day.

Long time readers will know I had 3 big goals post stroke:

• Walking
• Driving
• Working.

On current reflection: I walk, pretty much ok, I can knock miles out.

I “can” drive with my adaptions just currently can’t legally because of my cardiac stuff.

I’ve already said I never went back to work fully. I couldn’t do the clinical activity nor some other roles I used to enjoy.

To drop a day because I need the time feels to me like I’ve failed, which when you’re stubborn and determined it’s a bit of a blow to the ego; I’d gone back to work to prove to myself and the world I was still capable and useful and I’m not sure that’s where I feel now.

However I completely see why I need to do this, my physical and mental health need to have a higher priority.

Cause I’m holding on
And I can’t let go
Yeah, we’re holding on
But the times are changing (but the times are changing)
When it took so long
Just for me to see (I know)
Still I’m holding on
But the times are changing

🎶 – times are changing Astrality and thandie 2022

I’ve somehow managed to set 2025 off to a bit of a flyer, not quite the start I’d anticipated with the hangover of 2024s end of year cardiac disaster.

While I’ve not been able to get to the gym and push gymhab as anticipated I did have one big day of renewed therapies.

I returned to the hydrotherapy pool, some 10 months after my last visit which had always been primarily leg based at that point.

The difference from then to now was like night and day, so much more shoulder (and some arm) activity. The hydro assistant noted my nice movement and even speed in the water. It felt great, I loved someone else noticing the same as me; I think having someone else note it is a reassurance and huge boost.

Later that day I met with a new private physio: S2 who is new to the local area, we’d had some bits of communication beforehand and he told me he’d read a lot of my blog to get a feel for me before we met, it was great to enter into a new relationship with someone who had a good idea about me, I often get bored of repeating my health history.

S2 was full of ideas and testing what I could do. My favourite being when I told him I had zero bicep movement and then with minimal assistance got a decent movement “you’ve lied to me Ben you have got movement there” I did a little embarrassed giggle.

We followed up after the session with some communication together during which S2 said there is definite potential to continue and develop. I’ve taken that small bicep movement and elbow flexion and kept repeating it, remembering my entire leg movement came from a toe wiggle

The following day after big physio I had a chat with a wise person who told me I was doing “ all the right things.”not just in physio but my wider goals and tasks too.

I sometimes, in fact I regularly, need those positive words and encouragement. There’s only so often I can tell myself it’s going to be ok without other people joining in, I especially appreciate if they are professionals in their areas and people I respect

Sometimes just one drop is all it takes
One drop is all that it takes
See the ripples, watch them turn to waves
Right before your eyes
You never know who it might touch
And soon it might be all of us
Maybe there’s a world that you can change
So start a wave

• Start a wave – Cody fry

This one has sat in drafts for a long time, it’s taken a snow day for me to thrash it out and publish; enjoy.

Learning

Like most late teens in the uk I applied for my provisional licence aged 17 and started lessons funded by my parents. It was however a slow process. Multiple tests before I passed too.

I bought my own first car aged 18 it wasn’t anything special but it trundled me to work and back and gave me freedom, on reflection, the car was rubbish (to go uphill the air con couldn’t be on) but it lasted me a few years. I further got a small Japanese 3 door while with Rich that was still slightly bigger than his car so became our primary vehicle.

I was a good driver: calm, logical and confident. Rich has always found driving stressful so for most of our relationship I’ve been the driver and him navigator and we’ve certainly put some miles in over the years.

As my car was slowly becoming an issue my mum donated an old car of hers that was similar in size which was fine as a car but it never gave me a joy.

Around this time was when I joined my current employer, in my team everyone had expensive, premium cars a through a heavily discounted work scheme. I joined up getting a big Mercedes which was completely unnecessary but fun to drive and I loved the prestige with it.

3 years on and it was time to return the merc , with carte Blanche choice I decided to order something premium, cool, a bit different and very “Ben” and selected a Cupra Formentor, a car new to the uk market, petrol hybrid as it seemed logical to me to run on electric for commutes and have petrol for longer drives.i ordered this in 2021. It was delayed, delayed and delayed again up to 2023 when it was delivered in April. It was everything I wanted and more, fun to drive, economical, full of tech and looked amazing

I had 5 weeks of driving it before the stroke. Though Rich drove it for a long time afterwards.

I remember sitting in my hospital bed in hospital 3 thinking i would never drive again and the limitations that implied: how would i get to work? How do we go out? Would i be relying on other people as a burden for life?

One of my OTs assured me many people had gone before me and it might not be the same but I would drive again.

After coming home one of the OTs linked me with a local disabled driving centre.

I gave up the cupra as it was expensive and a tease that I couldn’t drive it. Rich continued to drive it until it went as it was big, lovely and fun to drive

After waiting months for an assessment in late 2023 I began pushing the driving centre to help.

I got a provisional date of February 2024 for an assessment which timed nicely with a planned work return in march. After putting research in and not wanting to be stuck waiting for a car delivery (plus knowing I was entitled to a car on the government motorbility scheme) I decided to pre empt the assessment and order a car; if I didn’t get my license back Rich could drive it.

We spent that weird week between Christmas and new year driving to car show rooms. The first choice had a huge build and delivery time. My second choice car was a small electric Peugeot, I wanted a small car to start driving again, feeling anxious. Electric made sense to me as I didn’t plan on any long drives and on enquiry it was 9 week delivery. I ordered there and then aware I’d likely have to update my order for any adaptions, assured it was no issue.

Suddenly it was February and assessment time, I had no idea how it would go. I had my assessment on a Wednesday afternoon. The morning I went to disabled gym group with dad as usual on a Wednesday. As I left the same car as I had ordered pulled up with a young man getting out. I gently asked to look at his car explaining I was due my assessment that afternoon and ordered the same , he kindly showed me his adaptations that meant he didn’t need go use pedals. He wished me luck as I left.

After a lunch with my dad we drove to the assessment centre where I was incredibly nervous; it was all new and felt very important with work seemingly hinging on it.

I was taken to an interview room where some driving history, physical movement demonstrations and a cognitive assessment completed by a driving instructor and OT. We then went to a car where I was shown a variety of driving adaptations. From research I had worked out I’d be fine with pedals on an automatic but secondary hand controls (indicators, wipers etc) would need adjusting.

The instructor was achap named Dave and quickly set me up a lollipop/ joystick that attached to the wheel was comfortable to hold it had buttons for the above functions and more. When he told me to drive out of the car park I did have a slight twinge of panic; it felt weird, I didn’t like it, but focused on the importance of doing it What followed was a 45 minute drive around the area near the centre, some manoeuvres, different speeds, roundabouts, etc etc. what was nice was Dave and the OT were very personable. It eventually felt very natural to be driving and chatting. I did slightly knock a curb at one point and thought I’d ruined my chances but on return to the centre I was told I’d passed the assessment, I’d need the same adaption joystick fitting to my new car and a few hours consolidation with the joystick before they would send the Driving authority a letter confirming I was ok to drive with the adaptions.

The consolidation hours had to be with the exact same joystick, with a specialist instructor, they gave me a link to find these instructors, my local one happened to be Dave the assessor which was some great serendipity; I liked him, we’d built up a nice rapport, he knew exactly what I needed and I wasn’t having to tell my story again with someone new yet again

I did the few hours with Dave, the sessions flew by, we had a lot in common and he was a nice guy, we did dry runs to my work, local shops etc to give me some familiarity.

I’d organised adaptions of the joystick to be installed on the car so at the end of Feb when we went to collect the car it was ready for me to drive straight out of the showroom. Perfect.

It’s a cute car, possibly a bit on the small side, but just goes. The tech is pretty good, it’s not the cupra but it’s fine for what it is.

If 2023 was the year of Recovery where I had my brain injury/ stroke. Where I had to start life from absolute scratch again, learning to talk, learning to stand, learning to walk, learning to live with a non functional arm, a slightly slower mental capacity and the huge emotional shift that comes with all that.

2024 has been the year of returns. Returning to driving; until

December where I’ve had to stop again. walking more distances confidently and getting somewhat quicker, returning to a full gym (still for primarily for rehab but back in the correct environment), returning to work (changed but back) returning to foreign holidays. Returning to days out, nights out, returning to feeling a lot more like me. It also meant 2 returns to hospital for more cardiac things, yuck.

2025 is hopefully going to be the year of rebirth or resurrection (not that I’m Jesus)

I’ve got lots of things in the pipeline I’ll likely share in the future but for now I’m heading into 2025 with huge optimism, lots of plans and a confidence I’ve not felt in a long time.

Happy hours and broken bodies
Spilling down the street (la, da, la, da-da-da-da)
Traffic noise and screaming highways
But I don’t hear a thing (I don’t hear a thing)
Just “la-da-da-da, da-da, da-da”
No, I don’t hear a thing (la, da, la, da-da-da-da)
Just “la-da-da-da, da-da, da-da”
The same old, same refrain (same old, same refrain)

You slept on it, I woke up (woke up)
Diamond rings and pixie dust
Can’t nobody buy my love
I woke up for me

And I got ready for myself

🎵 – ready for myself, Nelly Furtado 2024

NB 1: This is my second attempt at writing this post, the first waffled on for ages and didn’t get anywhere. So I bailed and restarted.

NB2:there is a more joyous festive post coming soon, but, as ever it’s sat in my drafts.

2 weeks ago I had a ridiculously busy week, super busy in work, busy out of work, busy with rehab but making good progress in all aspects plus the peak run to Christmas. Like I say: busy

Friday, I worked my usual day albeit stressful, walked to a pub near work, had a soft drink, left and went home.

2(ish) hours into being home and I felt my heart beating very fast, but it settled, soon after it repeated the process but this time the settling felt like someone putting the brakes on, my internal defib had stepped in to pace me.

Another short while later and I’d been laid on the floor with the dog when I felt lightheaded and dizzy. Rich forced me to bed physically pushing me up and towards the stairs. , I was asleep very quickly

I woke up at 4am feeling like a horse had kicked me in the chest.

It took me a couple of minutes to come round and piece the information together. “Ugh I think my defib has shocked me” I told Rich who was surprised it had as the pre warning alarm hadn’t sounded, it’s like an ambulance in my chest when it does and we’d both have heard it.

My brain kicked into gear suddenly awake and buzzing like a supercomputer:

• What do I do? Get help! From where? Local Device clinic will see the data, but it’s 4am and they don’t open Saturdays. Ok then try the general cardiology team, you know most of then. But still it’s 4am and they don’t work weekends either.
• Ok so what’s escalation? A&E but it’s a Saturday in December it’ll be heaving and you’re currently in bed in your pants
• Ambulance? See above and that feels wasteful.
• Ben you’re tired. Get some more sleep and then think on it.
• I woke up again at 6 after a jolt, unsure if my defib had fired again or if just done that sleepy jolt people do.
• After talking through options with Rich we decided a&e was the way forward.
• I got up, dressed and headed to a&E. The staff on the door less than impressed asking why hadn’t I contacted my established teams?
• I expected a patient with significant cardiac history explaining they had been shocked via internal defib would be treated rapidly and through escalation but nope.
• 5 hours in we’d seen a triage nurse who just looked stumped and told me what I knew: there was little to no cardiology service on a weekend.
• The longer we sat the more I realised no one was going to help, at best I’d be admitted to a medical ward and sit there until Monday when cardiology returned.
• With a busy afternoon and evening ahead and a severe hunger I called it to go home, via McDonald’s.

We had a quiet afternoon where I napped to catch up on what I’d missed overnight. Went out that night with close friends and had a brilliant evening and quiet Sunday plotting my moves for Monday.

Thankfully I didn’t need to do much. 9am Monday morning the device team knew from my data uploads what had happened and phoned me

“Ben this is a VT storm. It’s very serious. When we finish this call you must immediately call an ambulance and say it’s a VT storm, you have a defib and it has delivered shocks” uncharacteristicly , I did as told . I got dressed as the ambulance arrived.

A lovely paramedic team collected me and took me to hospital where we sat in the ambulance for a while, chatting with tea until there was space inside a&E . My a&e opinion at this point was not high.

I did after a while go in, to a majors space where I could be monitored. A cardiology consultant did arrive and talked me through needing to get my rhythm under control and safe, I could either stay there or in his opinion, go to the next door city with a cardiac centre; this would be the hospital where my stroke happened during cardiac surgery so I very bluntly explained I wasn’t going there and had 6 months ago been under a different cardiac centre about 30 miles away and could they be liased with, they did and my consultant there gave very clear instructions on my pathway but to stay there unless I deteriorated.

5 days of constant ecg monitoring which meant I barely moved off the bed A big access line in my arm to deliver a large infusion of a cardiac drug worked fast and we then moved to a tablet version before leaving at the end of the week.

It wasn’t the week I planned or wanted. I did receive lots of love and visitors. The care on the ward was outstanding and I left feeling as safe as I could, with a longer term plan.

Let’s hope 2025 starts better

I would strongly recommend reading an earlier post about My very first steps post stroke

Those first steps were June 2023. It’s now 17 months later (December 2024) and life is busy, I “walk” unaided, by which I mean I get up and wander about with no real thoughts or concerns, I walk my dog through the woods, I’ll walk shopping centres, shops, high streets, pubs, roads, fields, hills. You name it I’ll tackle it. I did briefly have a hiking pole as a support in summer 23 but was always keen to get rid and while I can’t give a set date it when, disappeared a long time ago.

I went back to work in March 24, just under a year post stroke. The return took a while to settle but the back half of 2024 has changed the role somewhat and allowed me to do a lot more, much of which has required me to walk distance, speedily and on demand. Where as initially i had happily parked myself in a corner for a day the past few weeks in particular I’ve hit a stride of doing lots of steps and taking opportunities to get extra in when I could, such as joining a work mate walking to the shop.

In September my PT friend was looking at my daily step amounts and challenged me to hit 4000 steps a day so I would easily get over a mile a day. It was a good suggestion and I’ve not missed a day since.

Today, 10th December I was chatting with a colleague about making sure I get my 4000 steps, they noted I’d been busy and likely there already, on checking I was over 3000 steps by lunch.

I got home with circa 7000 and a gym visit ahead of me. I always do a 10-15 minute treadmill walk at the gym, after which I checked and was over 8000. Initially pleased I’d doubled my goal I then realised I was tantalisingly close to 10,000 and while doing upper limb work decided I was having the 10k goal .

With some virtual encouragement from friends I committed to the goal and got myself back on the treadmill, I would periodically stop the treadmill and check my step counter the 9000 seemed to come easily but then slowed down, or maybe I did.

During the frustrating last couple of hundred 9800 on ward steps I started to think about those difficult early steps. The times I thought I’d never walk again, the days of having 200 steps as a daily goal and here I was marching on, on a treadmill, unaided about to hit my goal. I watched the 10000 steps hit my watch. I Desperately looked around the gym for a familiar face to tell and celebrate with but with no one around who I knew I ended up staring intensely at the water bottle filling station to prevent myself having an emotional moment, I couldn’t cry in a gym on a treadmill! Shortly afterwards O jumped off the treadmill and left the gym for home. Excited to tell Rich and lots of other people. Once I’d come down a little and had a protein shake and shower, I settled down with a beer and fired up the blog app to write this post and clear my mind so I’ll be able to sleep tonight.

You made me hurt times ten, the pain was at eleven
Crossed my heart, hoped to die a million times
Thought I wouldn’t come back, remembered who I am
Look at me, I’m still standing

There, there was a time
When I thought I had you, but you weren’t even mine
Cried so much I forgot how to cry
But I gave it time, I gave it some time

And now I’m better than ever, better than ever
Better than ever, better than ever
Better than ever, better than ever
Better than ever

🎶 better than ever ~ Nelly Furtado 2024

Ok this one is super niche.

If, like me, you were a child in the 90s you’ll know the power rangers were a huge phenomenon especially if you were lucky enough to have sky or cable tv.

5 teenagers fighting intergalactic monsters and every episode culminated with the teenagers controlling robotics to fight a super sized monster. The individual robots (zords) could combine into one surprisingly human shaped mega robot (mega zord) for the final show down; each time there was a variance in the zords I would love it, engrossed aalongside my cousin Andrew. At one point the megazords had become so large and cumbersome it gained an additional robot base to carry it around.

During hospital three, early rehab days once I’d mastered core strength and sitting upright we moved onto standing. Once I was deemed stable enough to stand it was decided I no longer needed hoisting via a crane style device to get me out of bed. In came the patient moving device: Sarah steady, excellent drag name fyi.

It was essentially a platform on wheels I could stand on, plates folded in behind me to stop me falling backwards and I could then be wheeled to whichever location I needed (usually the toilet).

It reminded me of the mega zord carrier and I spent one night messaging my afore mentioned cousin saying I felt like a power ranger.

I was recently asked a fairly innocuous question: “what keeps you going? Where do you get your mettle, grit and determination?”.

It has been part of a bigger conversation with a health professional and it’s brought the conversation to a standstill because I couldn’t t really answer “err I don’t know” was my very sheepish response. But the question stuck with me, not just because it had created an awkward silence but because as someone who went for a while without the ability to speak and express myself I now always chose my words carefully whether they be honest words, silly quips or proclamations of love I give myself a high bar on using my words appropriately and with impact (note this is on a blog) . So to be stumped gave me a kick and a challenge and it’s one I’ve rolled into this post.

While I’ve had over a week to think; I still can’t answer the question very well., certainly not concisely anyway.

I am not a man of religion or faith but I do put a lot of trust in gut feelings and my gut has told me all along “this isn’t it and there is a solid future ahead of you”. So I continually focus on that golden point in the future that life will be easier, I’ll do more, I’ll get the reward: ( movement happiness, confidence, freedom and lightness) that come with those things. I hold that belief firmly in my core. It might sometimes need other people to join in with the belief to bolster me but that future is definitely one that exists. I remember when I had just started walking and how slow, difficult and incredibly frustrating it was. I was with my mum walking somewhere and she was, as ever, full of praise for my development . I looked at her and said “what if this is it?” What if it doesn’t get better?” She very assuredly told me it would; she was right, obviously, we now know that brighter tomorrow was ahead of me. I thought of that conversation on my 1 year injury anniversary as I was “hiking” up a fjord in Norway. Confidently moving, at a reasonable speed, safely. Surrounded by a stunning environment, the cleanest air ever and alongside my Rich. I’d got my golden point.

If I can make that much progress with my leg then why can’t I do it over and over with everything impacted, I believe my golden tomorrows are waiting. I just wish they’d hurry up.

This is it, boys, this is war
What are we waiting for?
Why don’t we break the rules already?
I was never one to believe the hype
Save that for the black and white
Try twice as hard, and I’m half as liked

🎶-some nights – fun. 2012