weeks after the last disappointment(linkhttps://strokeandmirrors.uk/?p=87 1) where I’d had to commit to 2 more weeks we allmet again in the physio room,I went in all guns blazing after a night of thinking things weren’t progressing and I’d be stuck in HMP Hospital 3forever.
I set off saying I was finding physio hard work and the progress slow, the physios weren’t saying the same they said they pushed me hard because I could do it and their view was my progress was steady and ok.
I said I was home sick missed my family and belongings; this fell on deaf ears as I’d expected, I’d thought the previous night of alternative discharge methods (ie getting kicked out) my choices were:
Stop engaging with physio all together, but that reallywouldn’t help me, go on hunger strike (link to body image chapter, the big weight loss was found around this time) or start being abusive to staff,
I could maybe do number1 but 2/3 wouldn’t happen.
I didn’t even mention these in the meeting. I was told I needed another 2 weeks with a focus on toileting safely with the standing transfers so I’d be ok to do that at home, Rich did try to help me up and turn that day from a wheelchsir to the toilet but it very nearly did his back in and it wasn’t safe for either of us. (Link to psrole 3)
Trigger warning: suicide and selfharm references in this post.
Around week 3,in hospital3 when I’d had the parole knock backs (links here), I was also exhausted, frustrated and finding the nights very difficult unable to sleep with continual noise,the bed was uncomfortable and I couldn’t get into a nice position to sleep in and my brain was running at 100mph
I ended up in some very mentally dark places, I thought about life in general and that I never thought I’d walk agsin and be in a wheel chair for the rest of my life; I never thought I’d get back into a gym or gymnastics again and my hobbies, social life,career and friends had been taken from me. I also didn’t think I’dgo beck to work properly or drive again. I started to wonder what my life would be in the future and it made me question if I wanted a life like that.,Had I been at home I think I could have possibly done something bad and-silly but in a hospital with verylimited movement and resources I couldn’t think of a way I could change things. But I realised I had a loving husband, children, family and friends and looking at how many stroke survivors, online who had made decent recoveries made me rethink my dark thoughts, I might have lost a lot of my physical skills but mentally I was still me. Still with my unfaltering dry humour and love;l felt tlike a dropped kinder egg thr shell might be damaged but the goods remained inside
I decided wallowing in self pity didn’t help me. That morning after my darkest night one of my favourite male nurses walked past my door and said I looked sad I said I was so he came for a hug, not realising how much it meant to me at that moment in time. I did have access to a psychiatrist for a while in hospital 3 too; a very pleasant lady who would listen to me complain about things I’d lost and how angry I was and I was angry with and blamed the surgeon she told me what I was going through it was almost like a grieving process and my emotions were normal but in time I would accept the changes and learn to live a new way and to keep battling alongside the physio team as it would be my ray of hope. She was right.
Without evidence I couldn’t solely blame the surgeon it could have been my general health issues. Or medication or other things, I wouldn’t know until I meet the surgeon again to discuss it and gain clarity, grieving for what I thought I had “lost” wouldn’t make it come back nor would it change what had happened instead I’d have to learn new things was driving off the cards forever? My ohysios / OTsaid nope I just needed good left arm and hand control and that may come, same again for work but I had 6 months of their time to get through before seriously considering driving and work and even then there are adaption s to consider and for my hobbies, gymnastics was probably not going to be something I’d get back to, moving atspeed. throwing my balance off intentionallyand learning to push hard and heavy with arms then try to land again on my feet was just too much of a bad combination so realistically wouldn’t be a hobby again, the gym was a possibility in fact the team told me they had an adapted gym I’d likely try in the future (link to rehab centre post)
There were days I’d cry all day and the smallest thing could set me off, one day I went to sit in the “stroke garden” an outdoor space next to the ward with plants, tables and benches I used the area a lot when the weather was nice. My parents took me out in the wheelchair and we sat at a table for a drink together. It was a table in memorial to a malepatient who I worked out via the plaque had been 40 and not survived their stroke, with the age so close to mine and the understanding how ill I had been made me cry for a while, but appreciate that things could have been worse, at least I was still alive with my team remaining positive for my outlook and seeing some progress.
After understanding I was in a grief cycle. I started to mentally push myself to get into a better headspace.
I lasted a few weeks of remaining mentally ok. Then one day it all came back like a ton of bricks, Rich had joined me for dinner in my room. Sat next to my bed, we were watching tv on the iPad together, I wanted to be at home doing it on a Friday night but it felt such a long way away I cried again and more so after Richard left as I was feeling lonely and as if the real me been sucked from the world.
Littlecdid I know how soon I’d end up at home doing those things again(home link) and with such quick developments once home (link to progress)
Week 6, still residing in hospital 3 I had somehow forced myself into a great headspace and started looking forward to my daily physio sessions as I was seeing continuous improvement and it filled my days
On the Monday the physios did a scenario of: let’s say you’ve fallen over, face first, can you get up? And I could get to my hands (in a fashion) and knees, then a squat then up to my feet if I had something to balance with
Full face plant and an audience (thanks to my mum for the most unflattering photo that’s ever been taken of me. I dread to think what the rehab team were saying to me I’m up though!
Itwas the first time I felt I’d used a lot of my body together at the same time in a long time and it almost felt normal like I had some control of my body
The Tuesday was another time the physios challenged me. Flamingo standing with all weight on my weak leg and balancing then could I move my strong-leg around then n front of me and transfer the weight,it was wobbly but I did it! It was my first kind of step,
Also I wore shoes for the first time in over 2 months; I had a pair of white and green river island trainers on, I’d once bought them for a holiday and rarely worn afterwards.I’d last worn them going to theatre in hospital one, it turns out not only are shoes nice for style but they adjusted my feet position to stabilised me more by leaning me forwards a tiny amount and stopping my weak foot from rolling
In the time I’d been in hospital I had ordered 2 pairs of shoes both timberlands (or timbos) which as a brand I have a real soft spot for. One was a walking trainer I planned on using for dog walking hopefully in the future, the other the traditional sandy colour but with a blue detail these were going to be nicer and more for going out, I wasn’t even sure what going out would look like in the future, I couldn’t see me many beers deep, in in a bar with friends (normally gymnastic friends) having a dance I definitely wanted both pairs for our planned September holiday, initially booked as 5 nights with me, Rich and marina the dog. We planned on doing a lot of walking and going out when we booked it months pre stroke. But like many things it just got added to my goals list
Week 6 also had parole meeting 3, ,link here) where my request to go home was once again declined, while I had a room of everybody involved in my care we discussed the fact the rehab service was great but physiotherapy stopped on a weekend which was a shame when I was doing so much during the week. one of my favourite physios “bit” and said she would come in on the weekend on her own time and without the rest of the team which was incredibly kind of her
Saturday came I was sat outside with Rich, my parents, sister and her kids when the physiotherapist arrived
Claire, rich and dad left to go to costa coffee, I went to the physio room with the one physiotherapist and my mum who had been asked to assist, after some normal exercises like bridges, core work and then standing up. I was sat perched on one plinth bench and another was placed at 90 degrees to my right n making an L shape with the second bench . I was asked to stand. Go through the mechanics of moving my weak leg in a step: core tight, thigh up from knee, drive forward with hip., place foot,weight and power through the foot, get bslsnced then bring the right, strong, leg to match and keep repeating. The physio sat in front of me with a wheeley stool and kept moving back away from me, mum stood to my left supporting my weak arm as a slight balance aid and my right arm lightly touched the bench plinth Not to hold on to but just for a feeling of balance, it was happening after 6 weeks I had taken my first steps. I walked the length of the plinth which was six feet, I had walked!! As the physio said we were done. I got into my wheelchair and cried at doing something I’d ruled out ever happening again, mum cried too and even the physio came for a hug and cry with us.
We nipped back to my room to grab some bits and then went to find the family up in Costa to tell them, only dad and rich remained but were equally as thrilled, I cried again telling them what I’d done. It was a big step not just the physical steps I’d taken but mentally too, i knew this was a breakthrough and a big tick on my rehab progress
My little hobbit feet after just raking their first steps!
was lucky enough to grow up in a small village with a big family, my mum being the youngest of 5Children;who all of which had 2 children each as a minimum and most of us have had kids now too there’s almost 30 of us kicking loosely around one small villiage, my mums eldest brother my uncle Jim is generosity defined he’s never happier than when he’s got a house full of people. I’ve always said the weekends at their house are the aspiration I want; his adult kids and grand kids descend and often other people just nip in, passing through sayinghello there’s always a bottle of wine open and beer in the fridge, it’s a hub for the family and they just pass through and chat I hope our house becomes the same for my family in the future.
Uncle Jim has been ill for a couple of years with COPD and a lot of respiratory issues. He’s been pretty much always on oxygen and has times when he feels like he can’t breathe which cause panic and stress and I imagine just aggravates the other issues
In 2022 he started being semi regularly admitted to hospital when he felt seriouslyunwell with his breathing this continued into 2023.
He was admitted into my hospital 3in my week 7, but was adamant he was leaving his ward to find and see me, he’s a true patriarchal family man and wanted to check in and see how I was doing He wasn’t allowed a visit but his wife my auntie Christine did visit and said I was on his mind and could I visit him so he could put it at res; 2 days later me, mum and dad went up to see him. It was the day after I’d first walked (link:one small step) but we took the wheelchair to his ward.
He was thrilled to see me. He really was, said I looked good and he thought I’d have more facial droop, He was concerned about my mental and cognitive function and if I was struggling with anything communication wise he offered to come and sit in my room, he said this as he was sat with oxygen on, looking very tired. I declined the offer thinking I probably looked a little healthier than he did
But 2 family menbers both in the same hospital at the same time did feel a bit cruel.
We agreed to reconvene in the pub at a later date
This post in memory of Uncle Jim, Rip 28/7/2033, sorry we never got that pint!
hospital 3, the rehab one, I had my own room. During a session where I was trying to emotionally blackmail the are team into letting me leave I plead homesickness. Which while true, was likely more shock, trauma, depression and anger.
Their response was to get my family to decorate my nhs magnolia room with things to brighten it up, they put up a huge sticky sheet which became home to some cards and drawings from my niece and nephew, including some entertaining ones about mr bump falling over and a heart saying “I will get better soon”
My darling husband under hearing the phrase “brighten the room” decided the brightest thing in the world is Kylie Minogue so bought a life size cut out and propped her in my room,
Every time someone new came in the room they were startled by a figure in the corner. Amusing when it was friends. The agency night nurses were less than impressed on many occasion. Thinking someone had snook in and was stood silently watching them it became a running joke between myself and the majority of the staff, everyone was concerned about her when it was time to go home but she briefly got back before I did and went into my “recovery room” that was previously our guest room
Nurse Kylie in the corner of my roomNurse Kylie in my recovery bedroom still watching over me
I was placed in a nice side room, en-suite (not that I could use it), the room door had a singular pane of glass on to the corridor.
It became apparent on night one there that was a man elderly lady on the ward with dementia, I thought about her regularly, imagining that she was already being confused about the world then having a stroke: did she understand why her body no longer worked properly, how was physio with constant demands and intensity for her to experience? It felt exceptionally cruel for her, it played on my mind a lot
She had taken great umbrage with being on the ward, and most nights shuffled her way towards an exit, would hit the locked security doors and beg to leave followed by staff shouting her name , sometimes she’d ask for the police phoning as she thought she was locked in the ward against her will, despite my sympathy and being distraught at my own situation I did often have a wry smile at her antics
She regularly tried my room as an escape route but it didn’t go anywhere. Nightly I’d see her silhouette pass my door, then she’d appear, peaking in and breathing on the door so it misted over like the raptors in Jurassic park so she earned the name Jurassic Margaret admittedly not my most compassionate moment, one night she got in the room, clocked nurse kylie the life size cut out and like everyone else was startled by her so hit her with a walking stick, sacrilege! I buzzed a nurse who came and like a budgie at night threw a blanket over her head and essentially dragged her out of the room
There is someone called Marina who gets mentioned on here a lot and deservedly should get a bit more of a background. Our gorgeous border collie: Marina.
I never wanted a dog, after moving into our dream house a week before covid lock down in 2020we spent 2 years doing so much to the house and I loved the house so when Rich suggested a dog as he had been asking for years; I wasn’t interested in the slightest but as he was now working from home indefinitely, he wanted company and could commmit the time a dog needs i agreed to a dog but said let’s get a rescue he phoned a rescue centre and we planned to go on a lockdown Saturday in earyApril 2021it was all set times for visiting to allow social distancing
However on that-day I got a phone call in the morning from my mother. In the small, interbred village imagine Emmerdale but less shagging thst Igrew up in, an old lady who was a family friend had passed away unexpectedly overnight leaving a dog and many cats the dog was likely going to end up in a sanctuary and did we want to visit, see the dog?and if we wanted to rescue it?Rich was buying Dog bowls and toys within 30 mins, soon after we walked into a dead woman’s home, the living room was covered in smelly, wet, puppy toiletpads and a fat border collie met us, desperate to play and get belly rubs,
It turned out she wasn’t house trained and was fat due to a diet of takeaways and beers shared every night with her owner.
Within the hour Marina the dog was in our home, with hundreds of toys and loving all the attention.
She grieved for about a week, regularly panting and crying, she had clearly been loved before and loved her old owner, Rich spent a long weekend sleeping on the sofa with marina snuggled next to him
She’s soon become Rich’s favourite thing on earth and up high on my list too, she’s always “on” as she’s a bc, loves nothing more than laying over or between us both and getting belly rubs, she will move your hand with her paw to get her optimum stroking positions too, she will play fetch for hours and eventually I grew to like walks through the woods next to our house. I’d tell her what was going on in my world and in my head andshe didn’t care, just walked with me, hunting for squirrels or a stick to play with
Also there is no better feeling than coming home from a bad day to a bundle of fur thrilled to see you.
In the early weeks of my hospital stay I was worried what the dog thought had happened to me, the last time she’d seen me I had my suitcase and left her upset in the hallway , did she think I’d died like her old owner? The kids and rich would tell me her antics, sleeping under my side of the bed, stealing my clothes, moping and sitting where I did on the sofa, she’s a bright dog who is very loving
One day I told the physios I missed her and they arranged a visit to the ward garden.
She came when I was in my ‘stroke chair’ a giant black armchair style chair on wheels that forced me to sit up and supported me, I was in my room when the ward manager came in all excited “do you own a border collie?!” “There’s one in the garden we think with your husband”, she pushed me to the door, once open and marina could see me she did a little whimper the
The ward manager stood at the door and had a cry watching as suddenly all marinaslegs tapped at 100mph like a crazy tapdance when I got closer she jumped at the side of the chsir not onto me, I could fuss her a bit with my strong arm and she licked my arm in approval
While I was in holspitakmarina stole the grey cushion from my bed, put it on hers and slept with it, I assumed because it smelt like meThe regal queen
Hospital Days are long, nights are even longer, so I took to watching tv on my iPad in bed, I like a bit of sci-fi and horror and stsrted rewatching all of American horror story. During the Coven season it’s all about witchcraft and isbased in the deep south of America and had flashbacks to the civil rights movements. One night while watching a very uncomfortable scene the nights agency nurse “Sofia” came in to check on me. She was a pleasant black woman who cared for me many nights, this night however she heard some disgusting phrases from my iPad and I quickly apologisedand muted it.
The shame of that was awful enough.
Then the exact same happened the next night with nurse Patience, I was sure they would know each other and be texting about the racist piece of shit in room2.I’ve never been as embarrassed
I’ve never been the most comfortable person in my own skin, as a child I was painfully skinny,wore glasses and needed braces to sort my teeth all of which carried on into my 20s. I always thought I was a bit ugly, despite an army of ex lovers and a list of men waiting incase my marriage ever failed. I never felt particularly attractive
In my 30s I decided I needed to change this and started going to the gym where thankfully I got 2 very good PTs with great bodies who tsught,inspired and pushed me. I was also able to afford nicer clothes and’s a good barber and the odd few minutes on a sun bed (yes I know but it wasn’t high in my risk register considering and really started to feel good about myself, a lot of this was due to my body looking better, I even did a little bit of modelling which did wonders for my self image and confidence.
Then 5 years prior to the stroke when I went to work at the children’s hospital I met another Ben who had a massive impact on my life, he was tall and skinny and had had similar experiences, compounded by the fact his brother was a bodybuilder and PT (we’ll come back to him in time, the sparks chapter) he started working out we would compare workout plans and eating, when I knew my cardiac surgery was coming I decided I couldn’t just spend weeks in bed and watch my hsrd earned body melt so I went on a “bullk” eating 3000 calories a day and living in the gym, 5 gym sessions and 2 gymnastic sessions a week so about 8 hours of lifting and 3 of throwing myself around
While in cardiac intensive care my mum took a photo of me and showed me. That became the realisation point of how ill I was, central line hanging out my neck and my chest covered in scars, I looked so pale skinnny and wiped out too, I was told by staff I had a significant facial droop when we discussed the stroke. I didn’t see this until hospital 3,Rich pushed my wheelchair into a lift with a mirror and the man looking back wasn’t me, I sobbed and sobbed that it looked so bad, the physios had me start facial exercises which worked pretty quickly sandone day a friend messaged after seeing a photo of me to say every photo looked more like me, I think I cried again at that
The week before surgery/ stroke the heaviest and fittest I’ve ever beenOn cardiac intensive care looking very I’ll
Sometimes I refer to hospital 1/2/3 and it’s easier for me to put a timeline together of roughly what happened when and where
January 2023: agreed to surgery to fix a rhythm issue with my heart thinking it would solve a lot of issues
May 2033: phone call on a Monday to say surgery Wednesday and to be admitted to the ward the day before
Admission to hospital 1:
Pre surgery night. Morning went to theatre, afternoon / evening stroke became apparent
Next few nights Cardiac intensive Care.
Hospital2: after a few days in hospital 1 I was transferred to hospital 2 as it had a better stroke rehabilitation service and neurology care for around a weekX
Hospital3: my local hospital as part of an effort to get me closer to home and to useingstroke rehabilitation more effectively I spent 8 weeks here
Home
8 weeks later I got home, a tad out of the blue after being desperate for weeks to go.
Stroke and mirrors 