My stroke, exactly a year on and a year from hell

Absolutely no need for you to apologise. I had my subarachnoid haemorrhage 27 months ago. Still suffer from partial paralysis in my left arm and, leg.
Like you I was asked to leave my job, for exactly the same reasons. A real kick in the proverbial. When you are already at a low point in your life.
One thing that I have to constantly remind myself is how far I have progressed. Learning to walk again, finding new ways to approach every day life.
So remember that you matter and that you are improving everyday.
Take care

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good luck with it all

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Hi Joey.

So sorry you’ve had such a nightmare time of it. My heart goes out to your family too.

I had my stroke nearly a year ago. I’m currently awaiting a recording loop implant for my heart to see if my stroke was due to AF. Apparently, in 10% of cases they never find the cause !

I know how it can hurt when loved ones turn out to be unsympathetic. Fortunately my family were ok but a couple of close friends shook me to the core. Basically, I accepted things wouldn’t be the same with them but said my piece and moved on! Life is obviously too short.

Don’t beat yourself up. Hope you can enjoy life and make the most of things. Holidays are a bonus.

Best wishes to you all.

Cynthia

Ps if it sounds like everything is wonderful my end, I’d be lying but I’m doing my best. :kissing_heart:

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I. Have most of your symptoms and feel I am regressing. I do have saliva problems and when I swallow things go the wrong way and I cough and choke. My walking even with the stroller is not steady and I have had several falls one which cracked a rib and 6 weeks later, still hurts and I am frightened. My daughter is getting in
Ncreasingly cross with me because she feels I don’t try,I,m about ready to give up!
,

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@Georgie2021 sorry to hear of your struggles. If your current issues arw now or getting much worse you should get checked over. There are many ups & downs in the recovery journey. Please don’t give up. Have you sjpwn your daughter this forum? It might help her understand a little bit more.

Sending my very best wishes.

Ann

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Please don’t give up, I say as I feel the same way. I haven’t fallen for awhile now, so that is good. I have upset my daughter in some unknown way. She isn’t speaking to me much, but I am afraid to ask her what I have done. Very sad as she and my grandson are basically my only in person contacts outside of drs and therapists. The choking and coughing…I always get caught by surprise. I have forgotten to keep my head forward while swallowing, not try to carry on conversation or do something else while I am eating or drinking. After getting through the extreme dysphasia, I guess I thought it would never be a problem again. I was wrong. I won’t be trying to relearn multitasking while I have a drink or food near me! I am choking enough these days to remind me again.

I am sure, your daughter, like mine, loves you dearly. She may just be frustrated that she can’t help you with some things, or tired. I am certain mine is tired as her whole life changed along with mine due to the strokes.

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Hi Ana , I am 80 , had a small stroke and expected to be fit by now( my stroke was July27 last year) . Instead I have regressed in the last 6 months . Pressure in my head and giddiness have stuck there and it only seems to get worse , almost intolerable . Putting my head down is the only way to ease it . I finally went to a neurologist who wants an MRI to see if there is anything else going on in the brain . Still waiting for MRI Judging by your experience and others I may be waiting for improvement for a long time to come .
I should really check in to the forum more often because knowing what others are going through does somehow help .
There are still small things to give pleasure and in particular my children have astonished me in their care and concern . A few old friends are in my loop but many others have dropped out . Unsurprisngly ,
as I have dropped out too .
All the best to you and let’s hope the next year brings some magic ,
Gay

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When it comes to stroke or any brain injuries, the one thing I’ve come to realise is you are not in charge anymore, you are not in control, your brain is! And particularly in the early stages of recovery, your brain will dictate what you can and can’t do and when and where and exactly how much you can do!
Your brain is in charge now not you!

Doesn’t matter who tries telling you you’re not doing enough or you’re not trying hard enough, the brain is one stubborn bugger when it comes down to it’s own health and recovery. It will not allow outside influences to its own healing. Why do think you get so tired, fatigued, that tight squeeze you may feel in your head, headaches. That’s your brain dictating and there’s no use anyone trying to argue with it, if your brain decides that’s as much as it’s going to allow you to do, then wild horses aren’t going to budge it.

It has to be that way because it’s been damaged and it needs time to heal and repair and regrow and it doesn’t simply happen over night or in six weeks. And anyone trying to push for more too soon or too often are not going to get anywhere. That can hinder progress or there is also the risk of causing further damage. Let your brain and body dictate as it should do, it’s doing what’s best to heal and grow.

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Just a thought @Georgie2021 - When she says you’re not trying hard enough is there a nice way to say “you haven’t done enough research into the effects of brain injury to understand what I’m feeling and the multiple sources where you (she) can get more background”?

Also You might find showing her this list: 40 things to know: what would you underline add or delete

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My siblings and I used to get that way with our mum when she’d be recovering from illness, and two of my sisters was nurses. They had the greatest of patience for their own patients, but now one likes to see their parents ill and are always going to want them to hurry to get better regardless of conditions. Also we didn’t have the power of the internet to even look up mum’s illnesses as we can do today.

Mum was always seen as the glue that held the family together after dad died even after we’d all flown the coop and we were scared of losing her too. We’re older and much wiser now having been through our own ordeals. That fear often comes out as frustration and anger, impatience and criticism and needs to sat down and discussed. Show her this post, let her see for herself, through us, what you are up against, the kind of efforts you are already making, that she just cannot see. It might just make her understand and maybe even appreciate just what you are having to go through on a daily basis.

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Hello Gay, just a quick note to send you cheerful vibes and ask for an update.
We seem to have vaguely parallel experience, 80 y.o. With ischemic strokes a year ago so I wondered how you were doing. My daughter keeps me going and cheers me through the bad patches…after six months I was doing fine but since then the deterioration is more frequent and I no longer have the energy to fight by going for walks and just getting on with the things I can do.
How are you getting on? Best love, Ana

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Quick one @stokiejoey

I watch loads of ‘ambulance’ on bbc and Royal Stoke seem good and competent… would you agree?

Kieran

:polar_bear: :wink:

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Hi @Anav
I saw some research here or so ago out of UCL into fatigue and they were postulating to causes of fatigue that overlap.

The first was fatigue from healing that started after the stroke and faded out about 6 months ish .
The second was from altered patterns within the brain that develop post stroke and particularly poster healed damage so come on from perhaps 4 months ish and me persist for longer .

It sounds in my very unprofessional untrained speculative ignorant mismatching of random facts that you might be experiencing the latter - if it proves from the research to have been a well-founded suspicion -

I think the body of posts about fatigue on here suggests that this form is best handled by management of your reduced energy - search spoon theory on the internet -

There’s a lot on here about people’s management strategies and I’ve posted several times about diarizing diet and sleep and noise and other contributing factors and fatigue and then looking for patterns that span 1 to 5 days or longer perhaps

The old adage of take it easy and listen to your body or in this case fatigue level applies. I hope over the months to come you find management strategies and it reduces

:). Ciao
Simon

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Hi Kieran.
Yes royal stoke are great and really looked after me for the week I was in there while they got me medically stable and taking my first assisted steps before I was transferred to a specialist rehab hospital in cheadle, Staffordshire. The ambulance was also quickly despatched from the moment my wife called 999 after I collapsed in our bedroom. I’m actually going be back up there sometime next month to see my old stroke consultant to try and sort my ongoing stroke pain issues.

All the best :+1:
Joey

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Hi Simon and thanks for that most interesting and thought provoking input.
After more than a year in this situation I’m sure most of us stroke recoverers realise that there is an awful lot out there that the experts haven’t even tapped. I definitely listen to my body now and I had a very interesting observation recently…I have been deaf all my life, never bothered me, just wore the aids and got on with things and most people never knew. With this recent really hot weather I developed a fungal infection which meant I couldn’t wear my aids - disaster as I am stone deaf without them, and very frightening as one feels abandoned in a sea of silence. I just managed by spending a lot of time reading and not frustrating myself doing things that actually require one to be able to hear (just imagine I don’t even hear the loo flush and the only way I know the kettle has boiled is to put my nails against it and feel for the boiling water making it quiver). anyway that is just an aside to the point I want to make which is about upsetting the brain. I found a documentary with subtitles which I watched…it was fascinating and very thought provoking, all about Chile and Pinochet and the slaughtering of the Terra del Fuego Indians, the ones that one saw pictures of starkers with snow falling on them. The documentary ended with the political victims being thrown to their deaths from planes…you cannot believe that they actually found a lot of those by dredging up the heavy railway ties used to weight the bodies… anyway, it was a very moving documentary and not being able to hear anything like the music or the Spanish dialogue, I just read the sub titles.
My poor brain had a real wobbly and I was shattered the next day and for two or three more days by this completely new experience. I was already coping with the deafness and now there was this extra mental diversion, I have to say I had to go to bed so extreme was my reaction. It had to be the brain being over stretched. The Xanax helped to calm me down a bit,
I can draw no conclusion from this episode except to realise that we know so little and can only do our best and, as you say Simon, listen to our bodies.
I am averse to doing repetitive exercises because if one is trying to lead a normal life, then one repeats things constantly anyway…we have so much to learn but it is important to be positive and make the best of what we can do rather than moaning about what we can’t. Onward and upward! Ana

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Much you have said resonates with me.

I too have had similar findings. I joined a music therapy class - the loud of guitar from the amplifier (much louder than needed) caused feelings of nausea! And the need to flee. Never heard that before very surprising!

Also: Feelings of ‘spacyness’ that turn on & off like a light bulb …

Stroke seems to be the present that keeps giving!

I’m struck by the gulf between front line practitioners language and what would constitute attempts at real empathetic communication with non-professionals PLUS the gulf in vocabulary of researchers and frontline practitioners that would show the transition of cutting edge knowledge into everyday use. Two chasms that maybe go partly to explain why stroke care has so far to go to start giving us a reliable pathway.

Care pathway guidelines for England and those of Scotland show that even the basic structure for care from the point of acute need through say the first year or three is still at the more chaotic determined by personalities in practise than by known education process.

As you say no point in moaning :slight_smile: recognize and lobby for improvement to make that onwards and upwards the reality :slight_smile:
Ciao
Simon

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i had pressure in head stroke last may. still have

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Oh don’t give up. I have most of the symptoms to some degree, the coughing one is very trying, twill get better. I swear my beloved “D” thinks that I cough on purpose. I regard my stroke as the enemy and every little (and they are little) advance as a triumph. Forgive your daughter tis very difficult for non strokers to understand at times but bear in mind that they are really anxious for you to improve. Russ

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