Sharing my story, found that there wasnt much/if any info for younger people so wrote a blog for others my age

[frustrated123]

The Awakening (chapter 1)

• 4 min read

I have decided to share my experience of having a stroke at 42. I found that this life changing event has been a journey that I am still taking alone. I have had and continue to have an amazing support network (so I’m very lucky), so I use the term alone with caution but with it’s true meaning because this is something I nor my friends and family had any knowledge of. So that knowledge now only comes from watching what I have been and continue to go through.

There is unfortunately a lack of information with regards to young people having strokes and what to expect on the road to recovery.

We can all admit the word stroke conjures up a picture of the elderly not your best friend, daughter, son, wife, husband or that colleague that is usually sharing funny stories of what has happened to them that day.

I will say that there are different levels of severity and in the scheme of things I was lucky with the card I was dealt, but I can say that this continues to be the biggest fight I have ever experienced and every day is a surprise that no one has warned me about, both physically and mentally.

I hope that my experiences give those of you going through the same a heads up of what to expect (or those friends and family trying to support)

On the 18th February 2021 I had my Covid injection which I was over the moon to have been offered. I had worked all the way through the pandemic as a keyworker and experienced covid twice.

I had a small reaction the next day as many have and continued my life as normal.

10 days later in the early hours of 1st March I was awoken from my sleep with a pain I cannot describe. I remember tossing and turning for hours before I was able to fall back to sleep.

When I got up from my bed in the morning I stumbled and lost my balance falling back onto the bed as if I had still been drunk from the night before, but I had not drank.

I tried to continue with my morning routine which was to go downstairs and let my dog out whilst preparing her food but I lost my balance grabbing onto the tv cabinet hoping to help catch my fall, but the next thing I knew I had slammed onto the floor. It was then I realized that something was terribly wrong. It took several minutes to get up off the floor and for some reason could only use my left side.

I decided to ring my G.P and explain what had happened. They told me to come in (which in the current climate meant that they were worried too).

I ordered a taxi and stumbled to the car, asking for help to clip in my seatbelt and explaining that I was unwell and not under the influence of alcohol.

I saw the G.P who diagnosed me with vertigo although I explained that the room was not spinning and that my right side was weak as if I were drunk. But I was sent home with medication for vertigo non the less.

After 24 hours of taking the medication and having the worst headache I have ever had and feeling my symptoms were getting worse (I now know I had I second stroke that night) I rang and spoke to another G.P and was immediately called an ambulance and taken to hospital.

By this point I was unable to walk, with my right foot dragging across the floor, my words were slurred, my right arm was resting by my side and unable to assist me at it usually did without thought, my fist was closed and I was unable to open my hand. My coordination had left me and the body parts I could see no longer felt like they belonged to me. I was scared beyond belief.

To cut a long story short I was diagnosed with having a stroke and admitted on the stroke ward. This ward was filled with what we all expect to see when we think of the word stroke. I was the only person under 80. Although I was well looked after and the doctors gave me all the tests I needed, no one told me what the journey ahead would be and I naively thought id be “fixed” within a month and even said id return to work 2 days later.

For the first time in my life I had to ask for help, to dress, to use the toilet which was now an issue as I couldn’t control my bladder, to cut up my food, I couldn’t sleep, I couldn’t work my mobile phone to contact family (although quickly learnt to use my left hand) I choked every time I drank, my skin felt like needles, my right foot was swollen like a balloon and my leg was ice cold permanently( and still is 2 ½ months later). I couldn’t think of words I wanted to use and no amount of will could change any of these things. And trust me I tried.

Every comment I heard from fellow patients started with “your too young to have had a stroke” something I would have agreed with 24hrs before.

I spent 4 days in hospital until I’d had an mri on my head which they had to drug me for as I was threatening to sign myself out before I’d ever agree to that. I was immediately prescribed aspirin (which I must take for the rest of my life..(well the long term equivalent). I was immediately taken off the combined pill (which I didn’t know gives you up to a 70% chance of a stroke anyway, combined with other factors like smoking, being overweight etc)

Whilst on the ward visitors were not allowed due to covid which made things very isolating and lonely.

Eventually I was allowed home where I thought things would become easy, but this is where my journey actually began.

wrote 3 more chapters, if you want to read more then let me know and ill post it

[Bobbi]

Well done in making the effort to share your experience. Please be assured you have an audience which is very interested in your progress.
As you observe, stroke and the effects it has is isolating.
In a room full of people you are ‘the one’ to whom this happened.

When in company with others with a similar experience you suddenly realise you are not alone. We are a group, a community if you like. We can work together, share and learn from one another.

We are still a part of the human race and despite some loss can still function in a useful way.

There is more I could say but I’ll stand to one side, encouraging you to speak out and continue.

Let others hear what you have to say. It is valuable stuff.

keep on keepin on

I am one of ‘the ancient ones’ (approaching eighty).
Mine happened three and a bit years ago.
I feel I still have a future.
Here’s to what we can do with it.

[frustrated123]

i shall add the rest then, thanks for your reply

[frustrated123]

The start of the real journey (chapter 2)

• 5 min read

When I left the hospital I was given a commode for upstairs (as my only toilet is downstairs and it took me around 15mins to get up there in the first place), a walking stick and two perch stools (slightly slanted stools with four legs to perch on when standing becomes too much) One perch stool was for the shower and one for the kitchen for use whilst cooking (yeah right) and washing pots. All equipment it shames me to say I needed and still need (except the perch stool in the shower, too slippery when wet to be of any assistance). My house turned into a visual projection of the shame I was feeling. My grandma didn’t even have this equipment before she passed and she was 92.

I didn’t expect equipment in bright colours or a stick like snoop dog but the grey reality of who this was designed for hit me harder than anything else.

Just before I left the hospital I spoke with a physio, this is the first I had cried since my stroke and was because I was embarrassed to tell anyone what had happened. I had already seen the reaction from strangers, so what would my friends and colleagues think of me? The only means of knowledge comes from the advert on tv with an older lady whos’ face drops on one side and arm goes limp with the message of “act F.A.S.T, the quicker you act, the more of them we save”. An advert which is helpful and I understand it’s purpose but Chilling for me now. I was on my own, (when I sort help I was given vertigo medication and trusted that this must be right) and all the stories I heard from the women on the ward were haunting, every single one of them was on their own too and very much awake. I luckily was asleep both times, so the fear they went through was not a memory I have to keep. Just to quickly make a point..my face wasn’t affected and neither were the three elderly faces I grew to know over my 4 days in hospital. So perhaps the advert gives a slightly false stereotype.

I posted on facebook to tell those in my life what had happened. I couldn’t stand to call people and explain over and over. I can laugh about it now but it was my most “liked” and commented on post ever, although I know it was really support I was getting from those I don’t see that often. It meant a lot that people cared. One of my best friends thought it was a joke when I sent her a message and got in touch a day later once she had not received the punch line.

The stark reality of my situation hit when my family members one by one asked if I had wanted to stay with them. I said no (as I wanted my own bed) but once left alone in my house the fear hit. “what if it happens again”, “what if I don’t wake up”. “What if I fall and can’t get up” “how will I get upstairs to bed”. These thoughts were not shared with close ones because that would show I was weak, and I am an independent woman that doesn’t need help or show fear.

So I climbed what seemed like mount Everest to reach my bed (I should say that I am awaiting a knee op on my left knee that causes severe pain and the stroke affected my right side so neither of my legs were working). I slept like a baby as had been sleep deprived for four days (something I didn’t achieve again for a couple of weeks) but when I woke, the first thing I did was check that the parts of my body that did work…still did and that I had not had another stroke whilst asleep. Something I have done every morning since and will continue to do in all honesty.

Frustration came quickly, simply pulling the bedcovers off me was a task, getting dressed took me for ever (and that was just a tracksuit). I was going to have to learn to do everything again, and twice over, once with my left hand and secondly with my brain trying to reteach itself how to use my right side because that part of my brain had been destroyed.. I can only describe it like the scene in Kill Bill when she wakes up from a coma paralyzed and spends hours staring at her big toe trying to make it move. My brain physically hurt doing the same, but it didn’t work for me.

I attempted to make myself some breakfast but I couldn’t, my right hand was a fist that couldn’t open let alone hold anything. I was unable to walk without dragging one side so I couldn’t even carry a drink with my left hand because it would spill everywhere and besides I needed to use my walking stick in my left hand. I attempted a cup of tea and walked (if you can call it that) 5 steps and by the time I sat down I had only a sip left, leaving a trail of clues to what I had failed at when my family came to visit.

I needed to ask for help which worse to me than having the damn stroke.

I was no longer good at anything, I couldn’t even talk properly (even though my face looked unaffected). Words failed me and half the time I didn’t even know what I was trying to say. I quickly learnt to say as little as possible and to be sat when visitors came, I ate and drank (what was made for me and didn’t need more than one hand) with my left hand and so you wouldn’t know anything was wrong with me (or so I thought). I refused to accept what had happened and so I was shocked over and over again when I tried to do anything for myself and failed. I always believed in “try, try and try again” which had worked for me throughout my whole life, but WOULD NOT work for me anymore. Just trying to walk saw me on the floor several times and falling like a dead weight with no ability to put your hands out to save you…HURTS. But the mental side affected me more, not being able to make it to the toilet in time because even that muscle was dead.

I still have to tell myself that it is not my body which has failed, but that I have literally broken my brain and it doesn’t heal like a sprained ankle. It has to find a new way to learn what I am desperately trying to tell it to do.

It felt like I was a baby again and all I was good for was eating, sleeping and shi@*ing.

[frustrated123]

My New Normal (chapter

• 5 min read

The next 6 weeks were spent not asking the obvious question of “why” (as my friends and family would agree that I have always been that 1 in 100,000) but “how long”. A question that I prayed someone would/could answer but they didn’t/couldn’t.

At the start I was kept busy by visitors eager to show their love and support. Offering to do the most mundane of chores for me. I even got my downstairs decorated (a promise that had been made 3 years prior but had never come to fruition ). I would get several text messages throughout the day asking me how I was…..a rhetorical question I thought or at least a very “English” one as they didn’t want the actual answer surely? I started to simply answer with “alive”!!! I spent a lot of time sleeping but never awoke refreshed. If I missed a call whilst asleep then there would be a ripple of panic amongst my family who felt that this might mean I was dead. This became a silent pressure for me, a conscious need and care to never let them worry about me and to pacify their feelings regardless of what I needed.

Each day passed as though it were a year, it was spent watching tv shows that I had previously avoided due to fear of losing my braincells whilst waiting for an hours visit from a friend or family member.

I have only recently admitted that I felt an obligation to entertain as if I were my normal self, but also that behaving in this way would prove to me that I was still me and fun to be around. The thought of anyone feeling like it was a chore and having that private conversation between themselves saying “I know we should go see Tam but I really don’t want to cause it’s so depressing” was in the forefront of my mind (although I knew no one would actually think that). So, I joked about my circumstance, I told the story of falling flat on my face and wetting myself as if it were a sketch from their favorite comedian. The wobble/shake in my arm became a funny impression for others to imitate without causing offence. The friend of a friend of a friend who’d eventually recovered from a stroke became my assurance and focus. The odd trips to the hospital became a running joke about being allowed out on day release. All of these things being of my doing and part of the show I had subconsciously created to hide the real fact that I was unable to cope, that I was angry and that I was ashamed.

Over time, taking a break from life, earning a living and the day to day became understandably impossible for those around me. They stayed supportive, changed around meetings if I needed them to and visited when they could and I appreciated all of it and still do, but my days became almost impossible to get through, staring out of the window for hours at people walking past and getting on with their lives. I was not only trapped in my house but in my body too. People tried to think of hobbies for me….drawing or painting….im right handed so cant do that, go for a walk….i cant walk…..play computer games…..you need two hands….in this I did find entertainment and would chuckle at the lack of thought in their beautiful thoughtfulness.

The biggest honour that I have ever been given did arise from my unfortunate circumstance. My parents had spent the last year and a half within their home with their only outings being a drive or a private walk. They could not afford to be blasé about the risk of contracting Covid and therefore could only see their children/grandchildren online or at the bottom of their drive. After a year ½ of being military about it they risked everything to come and see me and every other day infact, I longed for a hug but would not ask anymore of them. When Boris allowed 2 days ago (24th May 21) for physical contact I was the first to receive that hug and it was like all my troubles disappeared in that moment. I know that it meant the same for them too.

After the 4 week mark and long before my well needed hug, I spoke to my GP from whom I had to gain permission to drive. Anyone who has a stroke has a natural ban for 4 weeks. If after 4 weeks your GP assesses you and finds you capable of driving then no more is said. Should your GP find that they are not satisfied with your recovery and therefore feels you are not ready then you will have to declare it to the DVLA. I can only assume that there are a number of hoops to jump through to get back on the road with a record held about what’s happened forever more. I can only assume it was due to covid that I wasn’t seen in person, instead I had a 5 minute chat about my progress and was told that he was more than happy for me to get back in the driving seat. Now I knew 100% that I was no where near able to drive, but the reason I didn’t fight the comedic decision was purely because I didn’t want the hassle of the DVLA. I did not get in my car for another month.

The first time I drove turned out to be one of the worst days I had had since my stroke. I had felt that I had enough control over my limbs to drive. I wanted to drive across town to my work and see the young people that I look after, I wanted them to know that I miss them and it won’t be long until I’m back annoying them. The journey is around 6 miles but it felt like 50. I was unable to break without doing an emergency stop every time and im talking about any kind of breaking ie in traffic. I concentrated so hard at pushing the break slowly and smoothly but would almost headbutt the windscreen each time. My natural ability to drive had also gone and I felt like I did when taking my lessons. I made it somehow to work but was panicked and had to admit it was a huge fail. My colleague had to drive me home in my car. My hope for some independence and means to leave my prison had been stupid.

I again joked about what had happened but did admit my disappointment. I didn’t attempt driving again for another two weeks after I had finally started physio. I went with my friend for an hours drive in the country. I wasn’t perfect but I was safe and better than some of those I know () I was so incredibly happy and couldn’t stop smiling and ringing everyone to tell them. I was finally making progress and regaining my once unappreciated independence.

A couple of days later I had needed to take my dog to the vets. My sister agreed to come with me to support. I had suggested that I drive there and she drive back. I didn’t make it half a mile before asking her to take over. I couldn’t do it!!! The ability I had been so proud of days before had gone. I no longer could hide my emotions and cried like I had never done before. I could not understand the step backwards. How could I do something one day and not the next? Why did no one tell me that this could happen? How long will I celebrate false victory’s? That’s when I became angry about the lack of information out there. Nothing about what to expect. I wasn’t the first to have a stroke at my age so why did I feel like Christopher Columbus mapping the way for everyone else. And all because I had a vaccine that was supposed to help me!!!

[frustrated123]

Chapter 4 Say Goodbye and embrace the Hello.

• 9 min read

I am sorry that I have not written this final chapter until now (23/05/2023). I feel that I have left those going through the same without a much-needed guide to the finale. I can only absolve myself of the frustration that I must have caused by the fact I did not know until now in this very moment, that it is time to lower the final curtain. Although life after my stroke continues to be a seesaw of triumphs and fails it has plateaued and is now the norm of the new me. I have somewhat come to terms with saying goodbye to the me before the stroke and have learned to enjoy saying hello to the new me. I have been surprised by the many silver linings I have been given from this very circumstance and am proud of the person I have become. I have grabbed the once-hidden opportunities that have since shown themselves to me with both hands, some of my life is now better than before, but it has taken me over two years to see the wood for the trees.

So let me explain how I got here and how you will too.

I left you all at the hurdle of being able to drive again. This is no longer a problem and became so not long after my last chapter. I still have to sit in the car for a few minutes before setting off to work out where I am going and which roads to take (often remembering a quicker way as I pass it). I also like someone to come with me if having to take journeys out of derby or to places I haven’t been before, purely for moral support as some of my friends still get confused between left and right anyway so not much help. Once my driving ability came back, I could also return to work (so I thought) which took me from the odd day release I mentioned before to integrating myself back into society.

The next year was spent back at work but with a very supportive line manager. He shielded me from the toxicity of higher management that I would later know so well. Not only this but he attended a series of appointments with my occupational health therapist to learn how to support me at work and to understand better the symptoms I was going through. My job sometimes consisted of 24hr shifts and the violent behaviours of teenagers that were unable to modify their own feelings through no fault of their own. I was a deputy manager which meant I had a lot of admin work, so my line manager adjusted my working hours to only office days and I was able to help achieve a great result from the ever-judging outside overseeing body that visits each year to judge the quality of the care provided.

My awkward perception of getting back to normal life had a nuclear halt when I was called at home by my manager. I was informed that a long-time colleague and friend suddenly died at work of a blood clot, hers had travelled to her heart whilst mine had travelled to my brain. She had also been to her GP feeling unwell and been wrongly told her symptoms were just anxiety. She continued to work and eventually had a heart attack; she was airlifted to the hospital, but it was too late. Not only was it a massive loss and shock, but it also had an internal effect on me. She was younger than me, more active than me, healthier, kinder and what I felt had a more justified reason to live, but yet she had died and I had survived. I could not and still do not understand why. I have been told since by professionals that I was experiencing PTSD and survivor’s guilt. The feeling of grief and loss mixed with the confusion of feeling underserved of life compared to her started to manifest in nightmares, fear of impending death and the daily wonder if today would be the day that I made that last journey to work as she had done. It didn’t help that her car was on the works drive months later. I began to think deeper about my own mortality, and it was beyond frightening. I would go to bed with a headache (the biggest symptom of a stroke) and decide whether I should go to a&e or risk it and just trust it was only a headache. The amount of nights I still go to bed wondering if ill wake up the next day is beyond explanation. I kept these feelings to myself as to what right did I have to moan about my situation? I was alive. I did not think that it could get any worse, but it did.

Due to reasons that do not need justification, my supportive line manager left within that year and I was left to manage the setting and full staff team alone. Fortunately, my 14 years knowledge of the job had not left me along with some of my faculties and I was able to continue to push forward. I was walking with a limp and was extremely fatigued, I would be in bed by 6 pm each night. I did not see my friends or family but was willing to pay that price as my job was really a vocation and was the only feeling of normality I had, however, once he left (10 months later), I began having to explain my health on a whole new level. Almost a year later to the day I had gone to bed and had noticed that my right leg was very swollen, I had also been suffering with excruciating cramp in my calf for some weeks. I did the unadvisable and consulted Dr google. The first thing that came up was DVT. I considered the reliability of this information for some time but then for some unknown reason and after previous nights of ignoring other symptoms, I rang 111, and after several questions they sent me an ambulance. I was sent for a scan and told I had another blood clot but this time in my leg. I was told I was lucky for having gone to a&e as in a matter of days it would have travelled through my body to my lungs, heart or brain with possible death as a result. I was put on blood thinners as well as the stroke medication I was already taking. I locked the devastation away in my brain and went back to work the next day.

To cut a long story short I was no longer greeted with the warmth and support at work that I once had, this was emotional battle that I had no room or energy for as I was trying to deal with a mountain of other things to do with my health. My family reported that I started to look extremely ill and were very concerned about me, I therefore made the decision to leave my job after 15 years. I had thought that this would be my life’s work and would be there until I retired, so was very traumatic, but they no longer deserved me.

I thought a lot about what I was going to do with my time, I needed to look after myself better both physically and mentally. So, I started University. The best decision I have ever made. It has helped me build up that confidence I lost and got me out the house. I began to feel my worth again. To help with this new life, I applied for PIP which took over a year and a trip to court to get. I was not entitled to Universal Credit nor any other help as a disabled person which I found incredible. I wrote to me local MP and a local counsellor explaining my circumstances and that I am currently unable to put food on my table. The response I got was that of a knowing frustration with the benefit system but nothing they were able to do about it. I did not qualify for help through charities or even food banks. I was angry that I had paid taxes all my life and was now unable to work due to following government advice, yet I was being treated worse than an animal. This was another massive hole in support. I began to think what I could have possibly done wrong in my life to have to fight and fight and fight, and to only live!!

Eventually, I was awarded PIP (after a year) I hadn’t realised how emotional the process would be, they truly leave you naked with all the information they want. I had to admit things to them that I hadn’t yet been ready to admit to myself. But after winning the tribunal (which was the same week as my exams), all the doors seemed to open, everybody wanted to help me now. I found this extremely unfair, anyhow, I was now able to financially support myself and I was finding my worth whilst at university, I had made friends and they had supported me to not be embarrassed about my limp or fatigue. They helped (and still help) me remember the words I search for whilst speaking in lectures and they helped me find the courage to use my stick which I had been embarrassed to admit I needed. I had a support plan in place and had a table, chairs, laptops made especially for me to do my work at home. Things were looking up. I am again at physiotherapy, and they are supporting me and referring me to all sorts of places that will help make my life easier.

[frustrated123]

Whilst studying during the foundation year at university, I was still having tests and hospital visits to try and ascertain why I had suddenly begun to get blood clots. It took over 2 years but eventually I was diagnosed with Anti-Phosphollipid syndrome. This is an auto immune disease that there is now research done to prove it can come from having the covid vaccine. Although yet another emotional hit, I was somewhat glad that I finally had an answer. I had already tried to sue the government through the’ adverse reaction to a vaccine scheme’ 2 years prior but was told that although it was 60% likely that it was the vaccine that caused my stroke, the 40% it wasn’t, was what they were looking at and therefore would not award me anything. This new diagnosis, however, and the new research means I can sue again, and this time hopefully win. It’s not even about the money, I just want an apology and recognition that my life has changed irreversibly.

I decided that I was now in the right place to deal with the emotional side of:

The Stroke

DVT

Survivors guilt

Auto immune disease and the host of emotions attached to my last 2 – 3 years.

I referred myself for counselling. I attended 2 sessions before I was told that I had too much going on and that it would be a better idea to re refer myself when I had less to deal with. I remember getting into my car after that session and ringing my parents to tell them that I had been sacked by my counsellor. I felt let down and that there must be something innately wrong with me that even a trained counsellor couldn’t help me. I was adamant after this that I wasn’t going to try ever again. After weeks of nightmares and paranoia that I had somehow cheated death twice and that I was paying some kind of price for that, I decided to refer myself to a different counsellor, she was great and really understood me. I told her about being sacked from my previous counsellor and how that had made me feel. However, after the 4th session, she told me that I had a lot going on and maybe I should refer myself once things had subsided a bit. What??? I had been let down again. What was I doing wrong. I wasn’t crying or moaning during my sessions, I was in fact explaining what behaviours I was displaying and the fact I knew why I was displaying them, but I needed help to change my outlook. I was being very helpful I thought. So, I had been sacked yet again. Well, I thought, this is just not good enough, So I changed my course at university to Counselling and psychotherapy. I intend to fix the system from the inside out!!!

There she is…she is back

All I have left to say is…

Keep going, don’t give up, demand what you need and be honest about what you don’t. I hope that I have helped someone’s journey. It gets better and even surpasses the life before somewhat. There will be a silver lining, just open your mind to receive it let’s take over the world.

Please feel free to drop me a message if you have any questions…about anything…it would be my honour to help.

[pamelai1]

I hope you’ve come across Different Strokes charity. It supports working age stroke survivors and has a brilliant closed Facebook group and regular Zoom meetings too where stroke survivors can talk, in small groups, about anything.

[frustrated123]

never heard of it, search engines dont come up with much

[Mich-mm]

Yes absolutely want to read more, you write beautifully.

[Bigmugoftea]

I’d definitely like to read more of your story. I had turned 41 two weeks before my stroke. I was told to sit down and stop making a fuss at the walk in centre I had gone to when I was starting to lose my coordination. I think they thought I was trying to skip the queue! I had two rare strokes in one and have now been diagnosed with blood cancer.

I imagine going through a stroke during covid times was particularly lonely. I felt very lonely on the high dependency stroke unit because I was the only person who could sit up and talk. Thankfully I was allowed visitors though.

I hope you post the rest of your story, I’d like to see how your recovery has gone

[Bigmugoftea]

Sorry, I didn’t realise you had already posted the rest of your story in the comments!

[Mich-mm]

Hello @frustrated123 I also had my stroke during COViD And like you say felt very alone.As visitors weren’t allowed in.I was also fairly young 49.non-smoker vegan plant-based diet and fairly active walking the dogs everyday.but as the internet repeats a stroke can happen to anyone regardless of age health etc.

[Bobbi]

@frustrated123

It would be relatively easy to put together these posts and create a small booklet, maybe an epub or pdf.

Posts in an area like this eventually disappear. It is possible to search but most who need this stuff want an immediate easy to obtain answer not a research project.

I feel your useful writing deserves an accessibility, a permanence, it might be interesting to find a way that could make that possible.

(I hope you don’t mind an old fossil like me sticking my oar in)

keep on keepin on

[ManjiB]

Good thinking Pamela
I understand it is “aimed” at the younger stroke survivors or as you nicely put it the “working age stroke survivors”.
Thank you.

[ManjiB]

Welcome to the community @frustrated123 and thank you for sharing your extraordinary story which I am sure will be of help to some of the members/readers of this forum

[quote=“frustrated123, post:1, topic:43775”]
It was then I realized that something was terribly wrong. It took several minutes to get up off the floor and for some reason could only use my left side.
[/quote

Personally, I would have dialled 999 for an ambulance in this situation. Why ring the GP when you feel something is terribly wrong? I wonder how this story might have turned out if you had dialled 999 instead of the GP?

Also, I wonder if you were unlucky in that the GP asked you to go to the practice (even though you probably couldn’t walk) rather than ring an ambulance for you.

I feel you have been unlucky and have been dealt a very bad hand all round

Wishing you all the best.

Namaste|

[Mrs5K]

@frustrated123 hi & welcome to the community. Thank you for sharing your story. I too would recommend Different strokes as they specialiase in the younger stroke survivor. I was in my 40s too when I had my stroke. Definitely didn’t expect it & didn’t believe them when they told me either. Don’t know if this link will work but hopefully it will take you to the Different Strokes Facebook page.

Log in to Facebook

[pamelai1]

Yes, that’s right. Aimed at; but not limited to. I know a guy who’s on the Different Strokes Facebook group and he’s 74!!

[Rups]

@frustrated123

Counselling and psychotherapy. I intend to fix the system from the inside out!!!

Great attitude to have. Councillors, psychologists and psychiatrist are people like us with brains like us and you have the added cognitive acuity of a lived experience of brain damage, thus a virtue. Your story is not unlike my own, stroke at 44, during lockdown, misdiagnosed with BPPV &c. I enjoyed reading your account.

[LynneT]

Yes, I would like to read the other chapters. I had a stroke 3 years ago. I count myself as very lucky as working again but took part time hours. I know how scary it can be and I wouldn’t believe that had happened to me until I saw my MRI.