Stroke and mirrors

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

I must spend a significant proportion of every day wishing things were different, understandably I think

– I wish the stroke hadn’t happened and the surgical team had taken better care of me

– I wish it had been picked up sooner and then treated appropriately.

I wish I had enough money to try stem cell or epidural stim treatments or some of the intensive treatments in Switzerland and the US.

I wish I could walk more normally

I wish I could run

I wish I could dress myself normally . This one I really miss. My look and clothing mean a lot to me.

I wish I could hug properly, I’ve always been a hugger

I wish I could exercise and weight train to rebuild muscle

I wish I could grip things and release.

I wish I could cook, clean and do more around the house

I wish I could do my hair with two hands

I wish I could travel and do exciting things in fun places like my friends.

I wish I could walk my dog putting her harness on, walking fast enough for her needs and not being wary of the woods and fields I used to love

I wish I could get back to theme parks and on rides without panicking about the safety aspect and what to do with the affected arm.

I wish I could use a knife and fork. Actually let’s not go there the list of places I want to eat and foods is obscene and I’d weigh a tonne in weeks.

I also spend time watching people do things like the above completely mindlessly because they have no impairment and why wouldn’t they. It just makes me jealous; sometimes a little irrationally, why don’t bad things happen to those people? Why is it me?

All I can do is keep hoping, trying exercises, attending physio and trying to either adjust to life now or work to a more regular way. Keep playing the lottery too and engaging with the legal process which might one day provide some semblance of justice and maybe the financial boost to get some of these things.

In another blog post (?which, link) I have written about the two week leg FES trial I had about month4/5 which was incredibly successful.

Fast forward a few months and upper limb FES had caught my eye, I got my nhs physio to refer me to the local centre who were only notable for their lack of action.

So with my sleuth hat on I found the upper limb FES devices they used were all manufactured and loaned/purchased from the national FES centre which, sadly, was located no where near me, but I could self refer and they might allocate a local,partner clinic, so I did and they did, coincidentally the local clinic was the same place I go for robotic therapy and private physio with physio A1 who after 2 sessions I already really rated and liked with instant rapport and respect there.

It was reassuring to know id be going to a clinic I knew and while the physio wouldn’t be A1, it surely must be someone else good.

I went in, very optimistic. When I’d used the leg device it changed my walking in 30 seconds and that allowed me to learn and progress hugely over 2 weeks; I expected a similar experience with upper limb, especially as recently there has been some small progress. Sadly it quickly proved to not be the case and while the physio had told me she had read the notes on file from A1, this proved to be untrue. I was answering, yet again the most basic questions about the layout and family members in my home, did I brush my own teeth? Did I eat? It felt like a regression of 9 months and I know A1 had asked these a couple of weeks before and I’d watched them type the responses, these were not relevant to the session, had been completed by my primary physios in the accute setting and played no relevance to this session. Thanks for wasting my time.

We then had a conversation about FES and my cardiac pacemaker and for the 3rd time since looking at upper limb FES I had to discuss the previous trial and that a letter existed from my cardiologist saying it was fine for me to use FES it had been tested with me and displayed zero impact on my pacemaker , the self referral had included the letter, A1 had a digital copy of it that had been put on file and I’d been asked to send it in again to the clinic a couple of days before the appointment I was now very sure the physio hadn’t read the notes, at all. They started many sentences with “obviously I’ve read the notes but I still need to ask” and repeated this enough times, it was very “I swear I’m not drunk,honest” then voms on your shoes it became notable that they were trying to hide they hadn’t; obviously you haven’t even bothered to read the letter we’re the words simmering in my mouth.

While using the FES and sometimes when not the physio would try and get my arm /hand doing certain movements then immediately stop because, quite often, my shoulder or chest will start a movement, because they do have some movement and it’s how my body has begun to compensate,The physio got quickly frustrated and exasperated“ben why are you moving your shoulder when I want your elbow to move?” I don’t know, hun, cos my arm is knackered due to a well documented accidental surgical error leading to a strokethat as a Neuro physio I’d expect you to be aware of how it works, I would currently love to reach my arm out, extend my hand and give you a really good slap*big exhale*

On the third time of her getting frustrated with me and then starting an insulting explanation of Neuro plasticity and having to learn stuff from scratch, I already know this and could likely teach them stuff at this point, I did lose my rag a little, “I’d like to move these things but just can’t because my body has been ruined”. I was angry and almost behaved worse, I was eyeing a mirror that could possibly take a strong kick but stopped myself from going any further, I think the look I gave was likely enough

I’d now decided I didn’t think upper limb FES was going to be the step I wanted and the physio was antagonistic, rude and hadn’t actually bothered to read the notes or was just lying combined with a poor attitude, I was mentally over the whole session and decided I’d just count down minutes to leave, which must have reflected in my body language as they then set off a barrage of unnecessary criticism about my posture, alignment in seating and even went as far as to blame my mental health for this No I was just completely checked out of the session due to your behaviour . The morning had been Frustrating and annoying. I’d been so optimistic heading in, I left genuinely gutted.

I reflected on it for a few hours while doing some work at home and then set about writing this post and also emailing A1 as I’m sure it would be discussed before I’d see them and I wanted to be open and honest.

I’m Chasing sunsets you can keep the clouds.

Cos ima stay in my lane

🎶Amir ekbitani- “in my lane” 2024

From hospital 3 (link: timeline) I had a core team of rehab professionals physio and Ot.

S1 my primary physio who did the absolute basics in hospital, up to my first steps (post link here please) and hydro when I was home, and my first set of stairs, I really grew to like her, as she did home visits too for a while she was home more than my kids, sadly she left to go travelling about month 6.

S2 an in hospital physio who did the very first sitting when my core was too weak, lovely young woman who didn’t complain when I fully toppled on her, left to go to an oil state for the money and sun (I can’t blame her) about month 4.

S3 an in hospital OT a similar age to me, great humour and sunny disposition, we could clash but not often and when we did she understood why but was still hugely encouraging, like s1 spent significant time doing home sessions too. Was part of the bigger discharge (discharge post link please).

While discharge doesn’t,and shouldn’t, be the end of everything the transition to community was poor and still not fully worked.

Community OT D1 I met once and was full of “with every other stroke patient I’ve done X” and ignored me to look at his laptop the only rude health professional I met, my second encounter was a phone call where he essentially accused me of lying to try and cover his errors.

My original OTs did a re referral to OT L1 who turned out to be delightful, a little older but with a wealth of experience and ring binders, natch, helped me give work a serious consideration.

Physio A1 found through the robotic clinic motion rehab (link: page to links) the first younger man I’d really encountered as a therapist. Him being a little bit attractive might have swayed my opinion somewhat but he was the first to really want to know the biggest picture: what was life pre stroke? How was it now? What were my bigger priorities? Session one he displayed so much interest and knowledge I left excited for my next session.

Session 2 he really challenged my poor upper limb getting great reactions and was genuinely excited by it, his eyes lit up and I loved having someone so excited. quick progress and care make me happy. He quickly followed up with a back and forth email chain that allowed me to demonstrate: I was listening to him and working, I had learnt about stroke rehab and could help push some treatment and also show my humour which he’d not particularly seen yet .

If it were a closer clinic and less expensive I’d go weekly, I wish I’d had access to A1 since day 1

In a previous post (link please) I discussed how I really dislike being called an inspiration when all I’ve done is the same as every other stroke survivor.

Today I spent an hour with someone relatively new to my life the driving assessor who is doing my consolidation hours adjusting to driving with hand adaptions before I’m allowed to drive fully independent again.

One hour in silence 1:1 is a rare thing and the silence needs filling, we’re both quite chatty which is nice and have built a good rapport quickly and have some joint acquaintances and even shared interests.

While talking about other disabled drivers he’s encountered and other stroke drivers he said I’d “been lucky really and dodged a bullet” as he’d met so many people in worse scenarios. I very nearly pulled the car over to leave because I could feel my anger building. I agree my stroke could have been worse, I know how critically ill I was for a while and to have survived is an achievement, but to have made the progress I have is down to hard work, grit and support, none of this has been luck and the entire thing couldn’t be further from the truth, I know there was no malice or ill sentiment in his words but it still annoyed me and not just a little