Stroke and mirrors

This is a wordy one, grab a drink and settle in.

It’s 365 days or exactly one year since my surgical cerebro vascular accident (their words not mine) led to an ischemic stroke and when I came round from anaesthetic couldn’t talk nor move the entire left side of my body.

What a year it’s been, after significant hospital time I, somehow, got home about 9 weeks later with just about the ability to stand which took a long time to master, walking took even longer, who knew it was so difficult?! My walk is still awful looking , requires huge effort and painfully slow, but I can walk, and the past week I was in Norway exploring the fjords with snow, ice, hiking and fun.

I’m aware in the stroke survivor community some people celebrate their anniversary but it’s something I am purposely choosing not to. Anniversary’s for me are for celebrating life, love and people. I’m not going to celebrate the thing that still feels like a murder. My life was taken from me, yes there’s more to life than fitness but the impact of an impaired arm and hand remains. I miss my fitness, I miss performing my full work role. I miss hugging people, I miss playing with my dog, I miss the gym and gymnastics and the body I had from doing those. One day I’m sure there will be remuneration from this but not yet.

Maybe saying it felt like murder is a tad dramatic, attempted murder maybe, I’ve lost some core elements of me but I’m still here. I’m working, I drive, I earn, I contribute what I can in areas where I can.

Maybe it would have been better if I’d not survived it; I’ve played this thought over in my head a lot the past year and I’m no closer to any answer.

For those that chose to celebrate their stroke anniversary, good luck to you, everyone is different, as long as you are happy and here you have my support.

What have I learnt this year?

⁃ how loved I am. There wasn’t a day as an inpatient when Rich wasn’t with me, and usually my parents and or sister would appear too.

⁃ How many friends I have, at one point I had to have a diary of when people could visit it was so busy. When I got home my birthday / return party saw my house absolutely chock full of people who cared for me.

⁃ I’m a determined, stubborn git, to those who know me this isn’t new information but I don’t think I’ve ever recognised it until absolutely pushed to my limits.

⁃ Life doesn’t have to stop because of one disaster, no matter how big, there’s people, skills and adaptions in the world to help, I never thought I’d drive again and when my very nice, new car was taken away I was absolutely gutted. 10 weeks later I had my licence back, was driving a slightly adapted brand new car that is still pretty nice. I’ve managed holidays, boys weekends away and lots of pub trips.

⁃ I’m good with words. This blog is my testament of this, it takes me time to plan out a post, piece it together and sometimes carefully craft it. I love the expressive outlet it gives me and that it’s often a great tool to clear my mind a little, plus I see the impact it has on my readers through the views, interactions, emails and social media messages I get. I’m proud of Stroke and Mirrors, what started as a silly way of documenting hospital life has evolved into something bigger. I might be busy with work now but I’m always planning posts and my phone notes app is forever bubbling with ideas, I’d like to cultivate and grow it a little more.

Hey, little me, are your parents home?
Are you dancing in the kitchen, hitting high notes?
If you only knew what you know now
You wouldn’t be afraid to sing so loud

🎶~problem child, Jude York 2024

Nb: this one of the few blog posts I’ve ever written “live” as in the actual day, it’s usually after a few days of processing and editing I’ll write things up, sometimes months , my draft tab on the blog system is huge.

Where am I now?

11 months post stroke / cardiac event, I’m in work routinely a couple of full time weeks completed and now pushing more on site hours, the past few weeks have seen a significant increase (at my request for multiple reasons) in on site activity, I’m finding routine, structure and set daily goals are doing me the world of good.

Body wise, I’m seeing continuous leg strength improvement, upper limb remains stubborn but is still getting daily physio, self led.

I’m attending robotic therapy once a month, after 5 months of zero contact I’m about to be picked up by nhs community physio, I still do monthly soft tissue work with a specialist who makes such a difference into how my body feels.

Physio wise I’ve currently paused private physio as it’s become such an expense, my favourite physio A1 wasn’t based particularly close either so meant a long drive each way. Self directed we’re in the local gym 3 times a week (me and rich) for strength work, hydrotherapy and some sauna / hot tub time. I have a goal of walking at least a mile per day and trying to improve my speed. I’ve just started with an nhs provided leg FES device, it works but is fiddly to set up and looks unsightly with wires from my hip down my leg and into my shoe. The clinicians running the FES clinic are delightful and very optimistic it can make a real difference. I still attend a 2 hour disabled gym group every Wednesday morning which is nice, a really lovely group and a good facility

Yesterday (Tuesday) id done 4 hours at work, on site, been really involved in some general day to day workings and got some of my own objectives complete, I left work with a diversion to the FES clinic to collect an additional item to try and make it a bit easier to use. Once again driving into mostly unfamiliar places, solo, getting myself out and about dealing with real world environments. Got home and did a bit more work to clear my mind.

Today (Wednesday) is my day off, I don’t work Wednesdays routinely, but everything is building to our first post stroke big foreign holiday which starts on Friday. There will be plenty of posts about this I’m sure, in the meantime make sure to follow me on instagram and threads @thebenrm which will likely get many annoying updates, apologies friends.

This morning I had expected a couple of busy work days to knock me a little but somehow didn’t, maybe it’s the routine 🤞

I was up and ready to head to disabled gym group with dad, even had time for a cup of tea before leaving.

Had a great gym session, I’d tweaked my routine and enjoyed it for the variety.

Afterwards, me and dad nipped to a travel agents for him to sort something for his upcoming holiday. I tried to get some currency while there but no dice, I did however go into a clothes shop to look for a hoodie as I’m going to need layers for our holiday. Alas it wasn’t exactly what I wanted.

Dad dropped me home, quick shower, lunch and ready for a soft tissue session. Set off with plenty of time but our single track road was blocked by a works van, quick 28 point turn and alternative route sorted; how’s that for executive thinking problem solving and driving?

I Had my hour soft tissue where it was noted how much I’d filled back out, chest and shoulders particularly, my stance is better and even my confidence was noted to be improved. Lovely stuff. They really worked some soft tissue niggles out too and we instantly found some better movements. We had a great chat for the full hour too, just a great all round session.

I then drove to the big shopping centre. Parked up, wandered in, got some currency. , first try, great.

Then set off looking for a barbers, my long term barber and friend (barber post link) has moved away I knew of 2 in the centre, annoyingly both were closed as in closed down, the second one was actually a fair old walk. For me, to get all the way there and find an empty shop.

At which point I decided I was leaving . Walked back to my car. Remembered a barbers in the town centre. Drove there. Also closed down, has there been a run on barbers or something I’ve missed?

I went home for much needed tea and decided there must be something in my little village and I was adamant I wanted my hair cutting before the holiday. I remembered where there was one, unassuming from the outside. But once in I was met by 2 lovely barbers, a great cut, hot towel shave and good price. I didn’t even have to talk about my walk or history, I am so bored of talking about it, it was refreshing to just go in, be a customer, and leave.

Afterwards I went home, we did a food shop, some last minute holiday bits shop and I swapped the top I’d bought earlier for the correct one.

My day off had involved: gym, shopping, holiday organising, getting a hair cut. It’s the most me I’ve felt in a long time. Long may it continue., the only thing missing was a sunbed session but I’m not quite ready for that yet.

If you call my name
I will run whether or not it’s tonight
Or the life to come
Or the life to come
Or the life to come

🎶the killers – life to come 2017

I was asked by someone recently what would I do if I woke up one morning and suddenly had no stroke symptoms what would I do.

My first thing would be to sit up and lean back with both arms, probably have an incredible time with my husband(😇), shower, wash my hair and face with both hands.

Get dry nicely.

Dress myself putting socks on properly and I would 100% put a hoodie or long sleeve top on, just because I could do it easily . I’d Style my hair with both hands. I’d put boots on and tie the laces.

I’d eat something in a bowl that needs 2 hands.

Make my husband a coffee and take it to him.

.

Later in the day I’d go to a supermarket and just buy whatever I wanted without worrying about carrying or packing.

I’d cook a nice meal for me and my family, id make Yorkshire puddings, roast and carve a chicken. I’d open a nice bottle of fizz and I’d open it with both hands to celebrate using it.

A million dreams are keeping me awake

🎶A million dreams – Hugh jackman 2017

I might spend my evening playing games or just walking around touching things. Or go to the gym or gymnastics.

I’d hug everyone I could with both arms.

These are all super mundane but it’s things I miss

Not figurative, but a genuine fence

When myself and Richard bought this house 4 years ago one of the big reasons was the proximity to the woods and fields. The fence is 150 feet from my front door.

Beyond the fence is a long bridle path that hugs the edge of the woods to the right and has crop fields on the opposite side, there’s also a pub at the end of the path.

Prior to the stroke, I would spend hours a week in the woods walking our dog and in the summer launching the ball on the crop fields. We sometimes walked to the pub too, if the path wasn’t muddy or it wasnt too dark.

Once home and beginning to walk I developed a bit of an obsession with the gate and what was beyond it. I think subconsciously my brain saw it as freedom and normality.

Very early on in my walking, still needing a pole as an aid one evening I decided I wanted a little walk, got my shoes on and walked. Rich was cooking when he realised I’d gone and it ended with an argument on the street, I had been naughty and had to apologise. I got a stern telling off by an occupational therapist for it too.

A few months on and I managed for the first time (still with the stick) to walk Marina just a little bit up the path.

It has become a challenge, I’ve tried to get to the woods a few times but been stopped by mud, rain, horses etc. I did walk it with my sister and her dog recently. Her dog had a leg injury so needed to walk slowly so was ideal for me shuffling along, my Marina hasn’t quite grasped that she needs to walk slowly with me as yet, she wants to be full speed all the time, one day girl I’ll get it

I’d had a very busy week, I’d worked my first full time hours (well mostly) week, 90% from home and one afternoon at a work event, my day off had involved a huge gym session where I’d managed significant strength increases and tacked on some additional non strength work afterwards.

Come Friday evening, like I was pre stroke, I was pleased the week was done. Richard had gone out for a meal and catch up with his friends but rather than spend the evening alone I invited my best friend over for beers, we had a very nice evening too. We could have done it in the pub if it weren’t for walking being so slow and laborious and the continuing frustration of not being able to carry 2 drinks.

In my head I’d essentially written Saturday off as I expected to be very tired. I was, but not flat, with an hour laid in bed doom scrolling and allowing myself to rest I decided mid to late morning was enough. Got up, dressed and joined Rich downstairs. My dad briefly nipped over;

Saturdays usually revolve around me going to my parents and eating all their food and seeing my sister and her kids, just a nice bit of family time. it has continued post stroke even more so now I drive myself there. currently mother is away on holiday so dad came to us to do one quick job we needed help with.

Once that was done, I had a bit of lunch. Rich walked the dog and we made a plan to do a shop for food for dinner and some wine, I had, roughly, in my head planned a grander day out but Rich was grumpy, not at me, just the world, so I never raised it. I went for a walk, Rich cut the grass. Come evening we had pizza and drinks, just us, quiet but nice.

Sunday I expected the week to catch me and be flat all day. Surprisingly I was up, bright, sparkly and ok at mid morning, showered, dressed and told Rich I wanted to take him out, I’d drive us to the place I wanted. We could get food, look for a gift and possibly some clothes.

Rich agreed, said his bad mood had lifted and off we went.

I drove, it’s a fair-ish drive, no stress,

Clothes shop was great, it’s a designer led shop and between the realisation I couldn’t afford all the clothes I liked and neither did I have the ability to try them on, I left feeling quite sad, in my head it was a snoopy moment with a cloud over my head as I walked out,Rich wasnt sad he was hungry so we went into a restaurant, it’s a chain I’m familiar with, Rich had a very late brunch, I had tapas (all of which was edible using just a fork or the one hand). We both really enjoyed the food.

One quick browse for a gift was fruitless and we left for home, both regretting we’d driven as we fancied a drink outside the restaurant in the rare sunshine and the cocktails looked great.

We talked in the car driving home about a pub visit with the weather being so nice, but we didn’t want the dog alone all afternoon. Slight change of plan and we’d walk to our closest pub, all 3 of us and sit in the sun.

We did, I walked there, keeping up with Rich and the dog. Had one outside but it dropped cooler. I went inside to finish my drink, Rich was going to walk back with the dog home at the speed she likes then return in the car to get me. It worked out brilliantly.

Once home we snacked. Caught up on tv and chatted through the evening. It had felt a brilliant weekend.

Despite the physical after effects of the stroke (now, mainly lack of upper limb usage) the well documented Neuro fatigue is proving quite hard to handle.

I’ve never been a morning person nor a “jump out of bed and do stuff” person. pre stroke I had my morning routine down to the minute. I had 3alarms to gently wake me up. on the third I would fall out of bed with enough time to: wash my face, brush my teeth, wee, dress (in clothes I’d set out the night before) , run downstairs, grab my lunch, work bag and hop in the car to drive to work. By 7:08 I had to be on the road as a rule.

In the immediate few days post brain injury I know I was barely able to stay awake to maintain conversations.

Once I hit hospital 3 with the inpatient rehab the rehab that was physically and mentally heavy keeping me busy plus the ward noisy at night, add in stress, worry, discomfort I was always shattered. Routinely napping in the day time, and often evening too.

Having spent a year in 2022 in Atrial Fibrillation, while maintaining a full time job that was often physical and a heavy gym programme, maintain a large home ,learn gymnastics and family life I know what tired feels like. It’s nodding off on my parents sofa on a Saturday afternoon because I’ve been settled for a while. It’s planning naps on my days off. Or 12 hour sleeps to feel refreshed.

Neuro/ post stroke fatigue is a completely different beast, I was warned about it and reading other people’s reports it can manifest in many ways. Mine is always a morning, and the best word I can use to describe it is ‘flat’ I wake up and it’s like someone has turned the saturation down on the tv and it’s slow motion, everything feels dull and lifeless. I lay there and process things ( say mentally plan my day or the next few days, check my emails, do some easy admin that doesn’t require moving ) make an important decision on showering* sometimes I’ll fall asleep again, not through choice just because I’m comfortable and the world feels slow so my body takes that opportunity; once I wake up again I have to remind myself it’s ok and “you’re recovering from a brain injury and this fatigue is well documented” other times I just sit in a vicious cycle of being cross at myself for falling asleep then feeling sad so stay put then either get angry or nod off again. On days with no specific goal or task this vicious cycle can last upwards of 3 hours.

I am notably better if I have a task, say an appointment, gym session or work objective , I’m finding I’m getting continually better at being able to get to those things most days.

There’s lots of coping strategies around energy levels and distribution so Neuro fatigue doesn’t become boom and bust but I am so much happier when busy and doing things I never get the apparently atypical boom and bust days whereas day is so busy i d need to stop, i just get the mornings of low saturation.

If I get told again about the spoon theory I’m going to put a spoon in someone’s eye.

* don’t think I’m disgusting, showering is a whole effort on its own. One armed takes a while, drying even longer, when we do gym and swim on Tuesday and Thursday nights I shower at the gym before we come home and get into bed, so Wednesday and Friday mornings it’s often a pointless exercise.

And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again

🎶 Rise up – Andrea Day 2015

Since I was a child I have never been a fan of socks, I don’t know why but I’ve always wanted to be barefoot.

Since the stroke my dislike for socks has become a disdain, hatred even.

Dressing with one functional upper limb is incredibly difficult, long sleeves are a 2 man job, trousers, T-shirts and underwear I can do fine on my own. Socks just no, it is not a one handed activity.

I even bought a sock helper from Amazon which needed someone else to load the sock onto a plastic plinth to, in theory, just slide my foot in.

But loading it into the device is also a 2 handed job at which point I may as well just let someone help me put a sock on.

Frustratingly socks are one of the first things I routinely dress with when I’m up, so I’m frustrated and angry very early into my day. I’ve thrown socks across the room in frustration; I’m not far off throwing them out of a window.

Todays post is an abridged version I’ve started this post many times over the past week, my head is so busy right now with so many big thoughts. I’ve ended up splitting it from one mega post into several smaller ones, probably all coming across the next week (or couple of weeks). Apologies if it gets a little messy to read.

One of these thought trains is an iPhone feature which I love and loathe in equal parts.

I’ve been an iPhone user for many years, as a family we’re fully in the Apple ecosystem my primary computer is a MacBook, I use an iPad personally and I have a work iPad too, my Apple Watch is a non negotiable every day to count my steps and distance walked; it’s been a great tool in rehab. My phone isn’t ever far from my hand, I have Apple beats headphones which I adore. Our home has an Apple TV and home pods, all of us are on the Apple family plan (music, photo storage etc).

But while all this makes a tech life quite easy I’ve recently found a potential drawback, my phone every day showing me ‘memories’ or making those little video slideshows. In theory it’s cute and pre stroke I used to love it . But now it almost feels like a taunt it’s like someone saying “remember this you used to do and the places you went and people you saw” it’s just a little raw and stings.

I’m still making memories now, albeit differently and the progress is great to document. Maybe one day I’ll look back on these memories more fondly than living through them.

Do you remember, do you recall?

When the good times filled your heart and soul and

We’d dance, all night, we’d kiss in the morning light

🎵 fire in the house ~ hard fi 2011

For whatever reason You’ve ended up here (the analysis I get says mr.google pulls me out on words like: young male, stroke, hospital) so I have accumulated a list of things that kept me sane during my 9 weeks of inpatient stroke recovery, in case other people land here looking for similar .

Phone – to have contact with the outside world/ loved ones etc, yes my speech (possibly similar for other survivors) wasn’t clear for calls but either way my one good arm could text and message and I did, a lot, I was constantly talking to my best friends, my husband, children, family when they weren’t with me

iPad / tablet – see above but bigger screen meant better for web browsing and tv, my hospital room had no tv so I could only watch Netflix, iplayer etc on my iPad In a world where your options have been massively shrunk and your options limited just choosing tv becomes huge thing.

Headphones or noise cancelling ear buds – see iPad, being able to chose some entertainment and try to close the world off a little is huge, noise cancelling is a god send at nighttime when care centres are noisy.

Eye mask especially if there’s no or tricky light controlls, to close the world out was great, I got the darkness I wanted and staff a visual queue I was sleeping which meant less wake ups for observations

Paper and pens or on reflection a small whiteboard and pens. For things I couldn’t speak or stuff I wanted to remember.

Photos I didn’t have any and it is a regret, well wishes cards I had and could partially read kept me going but photos would have made the alien environment a little softer and nicer with good memories of my loved ones

Chargers – for electronics mentioned above but extra long cables ., stroke patients probably won’t be able to plug things in or reach sockets Long chargers are an easy solution

Tissues – I was regularly a bit snotty and/or teary and nice tissues were welcome and heavily used, a runny nose is apparently quite typical. And tears to be expected.

Body wash- while I couldn’t wash myself the staff did shower me daily and having a nice non hospital body wash that smelt like me was super welcome; if my day set off clean and smelling right it changed my outlook for the whole day. My husband would once a week shave me with my electric shaver to make me look smarter too, he would do facials a couple of times a week too, properly scrub my face with nice face washes, cleansers and moisturisers so even if my body was melting away my face looked nice

Hair products I still wanted to look and feel like me and for me a dry hair powder did that

Sweets – in my case, M&S Percy pig fizzy tails – I love sour and fizzy sweets and these made me feel better and like I was at home.

Chocolate biscuits too. Small joys from the real world go such a long way.

Bedding and linens. – of course the hospital had regular bedding but it had that weird fusty smell and just weren’t as nice quality as what I have at home. I was brought

One of those big triangle pillows to keep me a bit propped up when my core was weak and stop my affected arm falling off the side of the bed, I used it for this purpose

months after coming home too.

Eventually I got a quilt and quilt cover too, something just nicer than hospital standard and more familiar.

Towels – again the hospital had them, well apart from the days they ran out and I was dried with bed sheets after sitting naked in a wet plastic shower chair for a while. But they were thin, scratchy and fusty, and regularly in short supply, having a couple of my own was like a luxury, knowing I’d always have one available and it was soft was lovely

By scars,for now, I’m just going to talk about physical ones

Prior to my stroke / surgery when the stroke occurred I had plenty of scars on my body, notably:

Front of hairline- from being hit by a car as a child the bumper tossed me up and I head butted the windscreen.

Back of my head- from a nightclub in Scarborough aged 18, dancing with a female friend and some man didn’t like that, he weirdly thought he had a chance with her but I was his the obstacle, never mind him looking like shrek so he hit my head with a Newcastle brown bottle, I have quite the lump from it.

My pacemaker scar – just below my left collar bone, and when I’m thin like I am now, post stroke, you can also visibly see the pacemaker device under my skin too.

I used to be super self conscious of it and a work friend noted a few years ago that I always hid it unconsciously leaving clothes or towels draped over it when in the work changing room I did eventually stop that after it was pointed out, that scar remains, prominent as ever.

Cardiac surgery scars- multiples from the failed cardiac surgery when the stroke happened I have a small one on my left upper ribs and a bigger one a little further below where my chest drain sat thanks to a hole in my lung that was also a surgical accident These are mirrored on the right side albeit smaller.

My chest now has 5 scars over it on what looks like random unrelated sites I semi- ironically call it my Frankenstein chest, if I can’t joke about it, who can. And now with zero muscle on my chest to disguise the pacemaker and detract from the rest I’m very aware how unpleasant it is to see, in my mind if I joke about it and own it, it stops people being overly interested /shocked etc

If I can just push through a bit more arm and upper limb control work to give me the chance to build strength and regain some muscle I’d probably hate seeing myself without clothes a bit less . Goals, goals, goals.

I feel knocked down but I won’t be broken, I won’t be broken
My spirit’s reeling, but my arms are open, I won’t be broken

🎶Keane ~ won’t be broken (2013)