"You don't look like you've had a stroke"

Hi Philip, I remember saying your wife’s exact words to my hubby when he was very poorly needing open heart surgery during covid restrictions.
Now it is my time to listen to him.

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Hi Karen I feel so comforted (not sure if that is the right word) to know that my anxiety about my mobile phone not being nearby is not unusual after such a traumatic event. I used to never even ensure it was charged!
My husband works away alot between April-Oct so I am home alone with the cat, some times the peace is lovely, however if awake in the night I am not so good. Be kind to yourself Karen x Di

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Hi, its been some time since i posted, but i get what you are saying. If i had a euro for every time someone said that, i would be very rich. I just shrug it off and take the positive from it. People dont mean anything nasty about it, in fact they are trying to be nice.
Keep fighting. Im now 18 months post stroke. I have “trained” non stop 3 days per week every week since week 3. Apart from holidays. I now play padel 3 times per week. Dont win many games but hey ho! I now lift 4kg weights above my head without a glove. Progress is slow now and minimal, but i have a neurotherapist that keeps a video diary. When I’m feeling a bit down she will show me a video some 3 months previous, and boy you can see the difference.
Do not give up. Fight the good fight and the most important thing is to recognise that the brain is a very intelligent organ which is very important in the recovery process. Good luck.

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I had a stroke in 2019 full left side paralysis
Given oxygen by paramedics who took me to Leeds General hospital. I was not given the clot buster initially as my symptoms kept easing by then. Eventually they decided too.
I live with the silent side of stroke weakness in my left side, fatigue & slurring as I get tired.
On the positive side I got back into the gym & pool within a month. Unless you know me you would not believe I am a stroke survivor as I have been able to recover much of myself. However I manage with my wife’s aid to have a full life, I drive. Walk, Gym, holiday etc so life is good.
:crossed_fingers:

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Hi Philip,

Sounds like you are experiencing similar issues to me. I’m 53 and had an Ischemic Stroke in August 2019.
The Surgeon was excellent, saving my life.
I am also peg fed through my stomach (nil-by-mouth) as well as having difficult speech (Dysarthria).
I use a gutter frame with assistance. My balance is gone. I have two Carers, four times a day and a Carer comes round to give my wife some respite, three afternoons a week.
I have had some great recommendations on here, so BIG thanks everyone.
I also join a number of great zooms every week and am positive for improvement.
Best Wishes for the future.
Eamonn

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Hi Eamon,

I had my first debilitating stroke in 2016, I descended into the depths of despair. By 2018 I was suicidal, my PIP had been refused a year and half previously. That all changed at tribunal, when my PIP was accepted and back dated. Then in 2023 on my birthday I suffered another stroke due to atrial fibrillation which put me in hospital for 9 weeks. I too had 2 carers 4 times per day but slowly I’ve whittled it down to 2 carers once a day. I’ve started going out in a wheelchair so now I have a motability car once again. ((Driven by my daughter). Never give up. Whatever doesn’t kill you, only makes you stronger! I’ve lost over 5 stone in 9 months. I now wear an XL and I buy previously expensive designer wear from Vinted! Take care. Philip

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Hi Philip,

Agree with you totally re making you stronger.
Sorry to read you were at such low point but great you have moved on.
Definitely I will never give up.

Best Wishes

Eamonn

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Hi, I’m nearly 3 years post stroke & went back to work 4 months after my first, 6 weeks later I hand my second stroke (did I go back too soon?). I know what you mean about not looking like I’ve had a stroke. Most people at my work are unaware as we’ve had a large turnover of staff over the years but those who were there at the time assume I’m over it. Outwardly I may look fine but the strength & focus even getting to work & be as normal as I can be takes its toll to the point I sleep most of the weekends so I can put in as much effort during the workweek. So glad it’s half term now so I get a week off but of course it means I have to catch-up on things I couldn’t do at home during the week. It’s hard but I try. I used to be so organised & prided myself on my multitasking abilities, but no more which is frustrating, even writing this message takes it out of me trying to spell correctly & get the grammar right takes ages. Loud noises go right through me, I still veer to the left & bang into things, still have nerve pain in my limbs & take a myriad of medication.

Take care of yourself

This picture always makes me smile as it depicts exactly how I feel.

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Hi dido , I know this reaction only too well. No one who hasn’t experienced a stroke can understand what we go through! Even I find it hard to accept that I’m not back to my old self yet. I’m 17 months post stroke and I know there is so much more that I can do now than at the beginning. I strive every day to get better but perhaps I will have to accept that I’m a new me now. Take care love Suzywong

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Thanks for replying. I too am starting to accept the new me, but endeavour to find ways to get better too, if that makes sense. Di

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Hello @Dido14 I can really empathise, because only a few days after my TIA when I was explaining to a client that I’d had to pause their project, they said “You don’t look like you’ve had a stroke”. And even now 6 months later I’m still finding concentration difficult and my work takes me longer, but they are impatient. It feels like they don’t believe in illness if they can’t see it.

I also have found that I need to keep my phone with me at all times. I’m grateful for dresses with pockets! Before my TIA I hardly ever carried a phone at all. My husband says I’m addicted to it, but I don’t actually use it., I just have to have it with me … “in case”.

Welcome to the group. I have found it so reassuring to know that I’m not alone. And to hear other people’s stories.

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Hidden disabilities, well is it a disability?

Let’s say hidden challenges are growing in the world these days. For me you could never tell I am Type 1 Diabetic nor could you tell that I had 2 ischaemic strokes in my life well until I open my mouth and explain to them what an idiot they are. My challenges are hidden.

Personally I had a blockage the stopped the blood to certain areas of the brain. Once I say that I ask them what is there excuse for the lack of ability to use their brain cells.

That being said. I am usually direct and have a limited ability for tact when it comes to silly people.

Sadly people in this world are superficial and if they cannot see it in some physical way they cannot believe or understand it. Unfortunately this is the world we live in I am sad to say.

If they do not listen to you and understand when you initial explain it to them try my way. At least they won’t bother you or say silly things to you anymore.

Best of luck,
Jeff

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Michelle, I understand the spelling and typing. I spend half my time on messages with the backspace key.

Keep on fighting, I know it will get easier it may never be perfect but us humans have a strange way of adapting and making the challenges we have our own normal and overcoming them.

Best regards,

Jeff

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Ive had what is considered a full recovery and have experienced several co workers and family say how i didnt look like i had a stroke. It really is true that the non stroke aware expect you to have physical deficiencies and when you dont that you must be just fine.
A year after my stroke I still have some left side neglect issues. I still feel like i lost a little finesse in my guitar playing.
I recently took up r/c Airplane flying. I got my wings but when getting instructed, i kept flying too close to trees on left boundary of field flying area. Once i moved more to the center of the flightline i did better. A case of 'objects closer than they appear’on my left side. I need to stay conscious that my brain is still recovering.
I still have issues typing text with keys that are on left side of keyboard. Still working on it… i edited this post three times!

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