It’s taken me nearly 2 years to come here and face up to my stroke. Sorry this may be a long one!

Apparently in Sept 2022 I got up in the morning. My daughter and I stood talking in my bedroom, suddenly I slowly slid down the wall and “fell asleep” on the floor. Knowing me well, she straight away knew something was horribly wrong. (She was 17 at the time) She called her father who drove home and luckily for me, he is team medic trained, the ambulance arrived and after doing all their checks couldn’t take me down the stairs because they needed another ambulance crew (protocol!), so my husband took me downstairs. I had the clot busting drug and was transferred to a second hospital to remove a clot from my brain stem. My family were told that it wasn’t likely I’d make it just as I woke up and told my Mum ‘I feel poorly’. I was transferred again and the first thing I remember is the Queens funeral! I spent 7 weeks in hospital (got Covid in there) and after lots of sessions with different therapist’s I was allowed to go home. I have memory loss, weakness in my left leg, loss of control of my left arm, double vision and horrendous fatigue. I have since seen my daughter turn 18 and I’ve had my 50th and these last 2 years have been hell. However, I am now strong enough to hear from the Stroke Medicine Doc that my Score was 35 on entry to hospital, which is certain death, but I’m still here!? I don’t know what the future holds and I’m not perfect, I’m also still scared of myself. Just writing it down makes me want to cry again and I’m procrastinating about pressing the ‘Create’ button, so I’m going to be brave.

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Hello & welcome @DillyDewdrop
Love your screen name :slight_smile:

Seems you’ve an admission ticket that can’t be sold or transferred!
As have we all as #StrokeThivers (survivors and carers)

Your story so far is within the norms that we have here unfortunately :frowning:

Weve written down a lot of stuff that gets said over and over in

Accepting your stroke is a useful step on the road to the best life after stroke.
Youll find an enormous amount of information in the forum … you can find it with the magnifying glass above.

Keep posting, asking, reading :slight_smile: Celebrate too :slight_smile: or rant if you need :slight_smile:

:slight_smile:

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HI Dilly dew drop, sorry to meet you here but welcome anyway, I have not yet read the other responses, but I expect there are many, let me tell you right now that you are in good hands here. there is an abundance of love , kindness and a wealth of experience of what you are now facing. If i can help in any way consider it done. Meanwhile i strongly recommend you visit here as often as you need, ask questions as they spring to mind, you will never be refused help and encouragement here. no doubt we will talk again, meanwhile , love to you and good luck on your journey
Wattsy

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Same time I had mine 26 / 42 on the US system of severity (I’d like to know where to find the UK scale of severity). The nurse said to my wife (while she was waiting by my side in emergency) “I’m surprised he’s still alive”. Well I am alive, and went for a short walk at Arlingham Horseshoe, next to the river Severn then for a drink with my Radiologist friend. A fab day out in the Sun today.

Some days I enjoy life, the next, I often cry or despair with twists and spasms coming to torture me. It’s one day = Yang / next day =Yin, and nobody can tell me why.

I hope you start to piece back your life, piece by piece ; there’s lots for you to enjoy, and I hope that enjoyment starts soon!!!

Good luck, Roland

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@DillyDewdrop

Talk to the Stroke Association, they are just a phone call away. There is much that is useful that they can provide. You will find them very helpful.

Here on the Forum we try to stand together and offer what we can, a listening ear, some relevant advice, a share of our own experience. There are very many of us here, some quite new, others with years of experience, but going through what is a traumatic experience, in the same way you are.

Here it isn’t ‘every man for himself’. You will find compassion, care and even a bit of banter if you are up for it. (you might live to regret that name by the way but please don’t change it :laughing: )

It is good to hear from you. Stay and become part of the gang.

keep on keepin’ on
:writing_hand: :laughing: :+1:

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Welcome to the forum

You have far more courage than you give yourself credit for. It takes a lot of strength, courage and determination to survive what you did. If you can do that, you can get through the recovery. Your family must be so proud of you and relieved that you lived to tell your story. So why not keep on living it and enjoying the life that you have. Turn your trials into challenges and goals, look for the positives, you have so many of them. Don’t let your fear and despondency overwhelm you and bury those positives out of sight.

Easy for me to say I know; no 2 strokes are alike and mine was far milder than yours, I got off lightly by comparison. But you are not alone here and I’m so glad you dared to be brave :people_hugging:

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Thank you for your words of encouragement and welcome. I know it would have benefited me sooner if I came here but I’ve always found it hard to talk about myself, hence the waffle!!

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Hi Wattsy, nice to meet you. (Like you said, could do with better circumstances) Now I can’t see your post and what you said and my memory is more than poor!! Thank you for responding to my post.

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Hi Pando, it was good to hear about your Sunday walk. I will try to be brief as I’ve just realised I’m not supposed to reply to every message individually! Sorry all!!
It sounds as though you’re healing well and pushing forward well. The Consultant who told me my score did also say that they don’t normally tell Stroke Survivors for obvious reasons. ( He did tell me the scales though) I think I made him laugh so much and asked so many questions that he told me. (Didn’t stop me from acting the clown though). I’m just about to do some weights now to help improve strength and control,I dislike gym work but ‘needs must’!

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Thanks for the story, DillyDewdrop,

I’m doing great on Yang days, but on Yin days, I struggle considerably. This alternate-day pattern has followed me like clockwork for a year. It has me stumped, and must be a neurological anomaly, since nobody can explain it to me.

I’m also about to work my CORE, and do floor exercises… at least I know I’m doing all I can to crawl out of this dark hole on Yin days…

ciao, enjoy workout, Roland

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@DillyDewdrop
you can reply individually - we are easy going - the software was written by young techies who didnt even realise they were imposing their values :frowning:

You can “@” mention folk IF you want to draw foks attention to something then multiple replies in one post is ‘easier’(?) to chunk

if you want to find @wattsy’s reply the click their avatar then on the pop-up click there ID then on the window select the three horizontal lines for “Activity” and view the list & select - it is probably the one you hit reply@ on and you can find that by juast using the down chevron at top right of your reply before you send it - then reopening your message after refreshing your memory.

:slight_smile: i can add screen shots if you need more - ts differrent on browser or app

app on fone is SO much easier - IMHO!

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@DillyDewdrop just popping by to say hi & welcome to the community. Now you’ve been brave & joined us I hope you’ll pop by from time to time. As others have said you’ve done amazing to get where you are given your starting point. Always good to prove the medics wrong though :grin:

Best wishes

Ann x

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Hi and a big welcome to this forum. We are a merry band of stroke survivors and their carers and families. Thus forum has been a godsend to me since my stroke 7years ago and is still my Go To place for advice and information and is a great shoulder to cry on when things get tough. Speaking to people who know exactly what you are going through is priceless and I hope you find it useful too. Look forward to hearing from you.

Regards Sue

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The way I see it, whether it is factual or not, I take the crummy days as a sign the brain has made a little more progress and is going to be a little more capable after it has had some time to recover, but in the meantime, it is going to be uncomfortable until it is ready to make some more headway. This always gives me, despite the disagreeableness and disquiet of such days, something to look forward to if even a placebo event.

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Hi Rups, @Rups

thanks, I appreciate your insight. I often wonder if the good day is the Yin or the Yang day? I always think it’s the Yang day; but what if it’s the Yin day? . Maybe (since I’m listening to Bruce Lipton on YouTube) Yin is the protective mode and Yang is the growth mode? Or is my body fixing itself or running diagnostics on the Yin day, and working out on Yang day? No doubt my subconscious mind is running the show here, though I have discovered my conscious mind can communicate and come to an arrangement with my subconscious mind. Over a year, the Yin/Yang days have switched over 4 times; each time it was imperative to change these days for travelling plans.

My stroke has messed with my mind, obviously, unless my subconscious knows what’s best? but I’m hoping things will mend over time, if I can get my act together. Thanks for you help,

ciao. Roland

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Rups, @Rups

let me ask you, if I may, how many good days do you have in the week? Are the rest bad or just indifferent? I forget how long ago your stroke was, just that it affected your Cerebellum. But what I’m asking is, on a scale of 1 to 10, how settled are you? Since I suffer from my Yin / Yang day syndrome, I am 5/10… maybe 6/10 if during the week I have a lighter Yin day?

My goal is to feel settled once more.
Ciao, amigo, Roland

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It’s a varying pattern each week and it isn’t always after exertion because even if I am pottering around at a leisurely pace, my brain can be doing other things, thought wise or stimulation it is receiving from my environment. I tend to dip over two or three days, sometimes four if going through a rough patch. As an example, I am in a funk now. It has lasted for two days with the previous day being quite jolly. This funk renders me fairly useless. I get a terribly tense head that feels like it needs to burp out the tension. My spatial and visual awareness is the most corrupt at this time, making for an unsteady gate, if I get up and walk now, it is like being in a visual fog. The nystagmus can be very bad at this time, making my field of vision blurred and lacking continuity. At the moment it is a challenge looking away from the computer screen to the mug beside me and taking a sip, tilting my head puts me off balance until I can recenter myself and resume typing. And all day I have dyspnea which means I am constantly doing Zen breathing throughout the day. It’s a big old mess, and I tend not to do much during this time apart from easing my way through it with a combination of gentle gardening, listening to audio books, a bit of stretching exercises, playing video games, watching a bit of telly, relying on positive stimulus to get me through. I had the stroke three years ago, I go down to about a four or a five if I dip, it only decreases lower than that if, for whatever reason, I get panicky or anxious about the increase in symptoms. I believe the gaps are much wider since first having the stroke, so I know that a state of homeostasis is possible. Every time I worry that this is my last night on earth, the next thing I hear is my alarm clock.

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Hi Rups,

gathered you had rough patches, but that really spells it out. “A tense head that feels it needs to burp out the tension?” nobody would understand that any more than they would understand my exploding foot, and locked muscles… every other day. “Corrupt” is a word I can identify with. My brain is corrupt every other day. Nystagmus does not sound like fun, but I have problems with my affected eye that no ophthalmologist can begin to label. I have a list of 5 items, stroke-related, that I would love to solve. I’ve got past the phase of worrying if this is my last night on Earth, but I strive every day to improve the quality of my life, or at least work towards that goal. What is worrying is that there isn’t a soul on this planet that can remotely understand what you, I and many others go through. I have a feeling many answers are locked up inside my subconscious brain, quite hidden from my conscious brain. I too strive for homeostasis, but while I have some excellent moments, like a day out yesterday without troubles, I know the next day doom and gloom awaits.

Here’s to solving the riddles of the human brain ; if I crack my Yin / Yan pattern or alternatively I manage to walk unaided, I’ll celebrate big time. I hope you reach milestones and also find an excuse to party. I guess every day we’re alive is a reason to celebrate. Anyway, I wish you all the best; you have a lot to cope with, brave man.

ciao, Roland

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Roland

I guess same as you. It’s 5/10. I’m just getting sorted to meet my Mum foe coffee. I know it shouldn’t be stress inducing but it is! My Mum is lovely but she doesn’t understand everything and makes me feel like I’m lazy. (She doesn’t say that, but she’s old school!). I love your energy, I can feel it through your writing and it’s infectious.

Thank you my friend

Deb

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You could always show her this post, if you use the forum on a mobile, it’s just a thought. There are many many posts on the forum regarding fatigue, and you have to go at your pace in order to combat it each day.

But as you say, your mum is old school, and probably doesn’t have the energy to educate herself to understand better on all matters of stroke. It is a bit of a minefield!

Fatigue is a safety switch for brain, it comes on to prevent you from overdoing things. And it does this for very good reason, your brain is avoiding the risk of another stroke, more brain damage. So it shuts you down regardless of who might want more from you. You or anyone else don’t get a say it, your brain is charge. And your health matters more to your brain than anyone else’s opinion.

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