Stroke and mirrors

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)

I’m sorry that I’m sorry, I’m even sorry I’m writing this.

I find I spend so much of my time starting sentences with “I’m sorry” but it’s said so often I’m fed up of hearing my own voice say it

“I’m sorry but I’m struggling to put a sock/ top / coat onwould you please help?”

“I’m sorry I can’t grab us both drinks, would you mind?”

“I’m sorry could you give me some space please, I don’t find moving around easy”

I’m just sorry life is like this, all my loved ones have had to learn to pick up all this extra work to support me and this is the wider impact on pretty much everyone I meet. I watch frustrations, disappointment and sadness creep across my loved ones.

I feel like I apologise for so much and my underlying guilt is that I am genuinely remorseful that I need so much help and this impacts other people so much; it’s not choice or self infliction. Just bad luck and possibly poor surgical skill and health care (tbc by a legal challenge).

But yeah I’m sorry it’s like this, and I’m sorry we’re all sick of my saying it

In my sometimes thoughts (link) I mentioned I’m able to recognise the darkest thoughts I have but I put them together and lock them far, far away in my brain.

I’ve always compartmentalised things in life; in my brain things like friends are grouped, I never had “work friends”, I have work and I have friends; some people at work became friends, but they were never my true inner circle, and if on occasion the two worlds met it made me very uncomfortable and unsettled I like boundaries and order, explains the clear control freak.

One work friend DB (I feel your grin because I called you a friend) hated that I would compartmentalise life. Over the past ten months I think being able to compartmentalise has been a great skill to have.

There’s now things I’ve had to learn I will likely ever get the opportunity to do again , I’ve boxed them together, closed that box and plan on ignoring it forever.

I don’t think I’ll ever scrub at an operating table again. I don’t think I’ll ever run into a resus or medical emergency situation and join in.

I don’t think I’ll ever cook meals again, I don’t think I’ll ever eat meals with real cutlery again or be confident enough to go to a restaurant without pre checking the menu for finger foods.

I don’t think I’ll ever get back to gymnastics. I didn’t find gymnastics until my 30s and despite never being a huge sports person or super fit, I found a team, like minded people and enjoyed learning the skills and pushing myself.

I don’t think I’ll ever get the body (read: muscularity, strength, appearance) I had just prior to the stroke.

I don’t think I’ll pick up my niece and nephew or my friends children and play with them. Though I do a decent job at trying with one arm

I don’t think I’ll play video games with controller sagain, that’s a huge level of thumb Dexterity. I have started some mouse controlled games instead.

Big nights out, I rarely did them but I did used to enjoy it when I did. I do think dressing will get easier in time but a shirt / blazer isn’t doing it for me now, lots of beer, I still love my beers / Proseccos but I look unsteady enough without throwing 8 pints in the mix. I cannot dance. One leg barely moving and an arm just hanging looks weird, it just is. Jumpy club /gymnastics were great for a night out and while I was never desperate for a night out I’d love the opportunity to try it again.

I spoke about the boxing off with a consultant surgeon colleague recently and they were surprised to hear my method of mentally filing things and also that I’d accepted this as an outcome.

Theme parks and rides, I’ve mentioned before I’m a bit of a theme park geek but I think that hobby is another that realistically is gone.

“Real holidays” the type where you get on a plane, spend a week sunbathing and eating then fly home.

Airports are terrifying when you’ve got limited walking speed and I expect security would be difficult too. I could easily however sit on a plane but a week somewhere new not knowing what I can do and where I can get is daunting. Add the whole eating worry and it’s all piling up. Plus on a holiday I like to swim (long term goal there) or visit a water park (see: theme parks).

To me just making peace with these things allows me to move on a little which has ultimately got to be the end goal. If I focus on the things I can do and build on them I get to ignore the gone things

Trapped in a box, my life becomes void
And all I thought for myself is now destroyed

-trapped in a box, no doubt, 1992

I’m not sure the catalyst but in the past week or so I’ve had a flurry of nice things said to me and honestly I really don’t know how to respond, I just get a little bit bashful and say thank you and try to look sincere.

The biggest praise recently came from physio A1 who I saw in an afternoon when I’d been to work in the morning for some return planning then driven up to his clinic about 40 miles away

“Are you even listening to yourself Ben?You’ve been in work and you’ve driven; those words and actions are huge” he has naturally very light eyes and they properly lit up when he said that followed by “I’ve not known you that long but I am incredibly proud of you” he is correct, he hasn’t known me very long but he’s someone whose opinion I value. He gave me a very professional but caring shoulder squeeze. “Err thanks” was my weak response.

The work session in the morning had involved a walk around and observation with my employers occupational therapist, who had Neuro / stroke knowledge and experience, they analysed everything from my walking. Sitting,talking we talked through my day one (yawn)to now and said they could see my determination and they thought I’d done incredibly well so far, and clearly had some strong determination in me, very kind and true words.

Later in the week I was in work again for some educational hours.

Two surgeons who I’ve always had good relationships with came for a catch up; one a consultant, one a registrar.

The consultant demanded a hug and I did my best with the affected arm. They told me how well I looked and was thrilled to know I was returning to work even if not in a proper clinical capacity they were happy I’d be around again for knowledge purposes and made some great suggestions on things I could do to return.

The registrar is someone I’ve always got on with, we have an affinity due to their partner having cardiac issues so they’ve always kept a watchful eye on me. They gushed about the progress I’d made, they had seen me sporadically over the past 10 months when I’d previously dropped into work and we’d messaged a few times; they set off saying how far I’d come and they were happy I’d done so much and to take my work return steady. They even complimented that I looked like I’d filled out a bit more and got some muscle back (this is always a welcome observation although likely untrue ) between us we talked about how difficult the time has been, they had a little cry “from pride” apparently. And lots of one armed hugs; I really miss being able to give real hugs with both arms.

Even small things like walking around my large workplace with my boss and him saying how much better the walking seemed in just two weeks is a nice observation and even nicer to get as feedback

My mum, I’m sure I’ve mentioned many times how close we are and how much she’s done with me and for me since the stroke, a few days back said to me that since I’d started driving again and doing some work how much more confident and happy I seemed it even got a “I’m so proud of you” which always give me full heart warming moments . After filming some gym work to send to my Physio I noticed I had the tiniest of arm pumps going on on affected arm, screenshotted that split second and sent it her to show, the response was “I hope so and you’re coming on leaps and bounds at the moment” big beaming smiles over here.

Dreams aren’t what they used to be; Smile like you mean it .

– the killers,2004.

Because the progress isn’t always constant*, progress is never, ever easy and like a murderer in a horror film the darker thoughts are always just a step behind me, silently waiting to get me.

* a1 the physio tells me progress is not linear, its peaks and troughs but we just aim for an upward trend

Despite an incredible week that was very work orientated;a boost for me mentally and physically, a really strong, interesting and progressive physio session alongside continuous independence building so come the end of the week; a little bit of quiet time with my headphones and music with beer absolutely rumbled me.

I can’t even say one thing in particular knocked me, I think it was the realisation that yes I had done a hell of a lot of ‘normal’ pre-stroke things and ticking off some bigger goals but life still feels a long way from what it should be.

Even silly things like in a supermarket not being able to dash off and grab something we’d forgotten , because I can’t dash and can’t carry things it’s just a continuous mild annoyance and reminder that I’m not really a full human. Or that if I could I’d have done nice things like grabbed my mum a few of her favourite imported beers from a shop I only pass during work commutes, but can’t do, yet, just these nice gestures I now have no option to do.

Not being able to pour my own beers at home, not being able to buy my workmates coffee because I can’t get them back to our office, or even make a set of drinks in our kitchen.

Really fancying a bit of time in the pub with my husband over the weekend but knowing we can’t just walk it, due to my speed, so it’s either one of us driving or taxis which is a faff and needs additional planning. In an ideal world we’d walk and take the dog, she loves the pub but I’m just not fast enough to make this happen and keep up with a hyperactive border collie.

Even if we get to the pub I can’t carry two drinks to a table, which is absolutely ridiculous and embarrassing.

Waking up on a Saturday to nice weather thinking pre stroke id have gone to the gym. Done a nice arm and chest work out, put on a tight tee, might have grabbed a fast food lunch while out, had an afternoon with my family then probably suggested going out in the evening.

But gym visits like I used to do still feels like a pipe dream, lunch is just too difficult withthe one good arm. It’s not like i can even grab things from a drive through window or carry a tray with food on, or if I went to our local shop for fresh bread I can’t carry a basket around the shop, certainly can’t pack my shopping. Neither could I cut or butter bread, all frustrating and leads to me just waiting for Rich to offer to get me some food like a toddler.

But I did get up. Showered which remains a continued faff with one arm, especially drying. I dressed myself and today put on a very specific pair of socks. Geeky ones that are merchandise of my favourite rollercoaster which closed for a rebuild almost 2 years ago (honesty moment: im a big theme park geek) and today was the re-opening day, my best friend was there. I’d have loved to have been there too , got first day rides, merchandise and seen some friends but while my affected arm remains pretty useless I can’t even consider that as I don’t meet the rides safety criteria

We utilised the rare dry weather and tiny sliver of sun to get out for a little walk and cake outside but it wasn’t that warm. In an ideal world I’d have just run upstairs, grabbed a hoodie, then put a gilet on but there’s no running upstairs, long sleeves are a two person job and it would have realistically been 20 minutes to get ready which takes the spontaneity and nice intention out of me saying “shall we go grab tea and cake in that covered courtyard”. Puh.

Friday night all these , and some other-thoughts were bobbing in my head together which come like a fog then cover the weeks achievements I’ve had, I know I’m over thinking, I shouldn’t and should focus on the good but sometimes it’s very hard to do that I am able to reach out to some friends though and say I’m in a dark spot and they rally with love and support even if it’s not physical or an invite to talk it out over a coffee or pint or hour on my sofa.

The thoughts are sometimes, alarmingly dark. I always like to think I’ve been pretty stoic and solid to get through the past ten months but then I get these odd ‘sometimes thoughts’, I don’t have a better phrase for them but I’m able to box them away knowing I couldn’t physically act on them even if I wanted to. I had them pretty regularly while as an inpatient at hospital three but if I got through that I can get through a couple of low days.

If only I don’t bend and break, I’ll meet you in the morning when I wake.

Keane, bend &break, 2018

So, aware I get pretty regular questions sent via here and my instagram. Let’s open it out properly.

Until 11th march 2024 the anonymous ask me anything link below will be live, I’ll collate and respond to questions on here as a new post.

Be. Ben

https://ngl.link/thebenrm