The Elephant in the room?

A lot of support trys to offer inspiration from the recovery experiences of other Stroke patients. In our experience this is demoralising and de-motivating as my husband’s recovery is so much less. Nine months post Stroke and still unable to stand or step.

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Hi @Hollie welcome to the forum. I am almost 3yrs post stroke, I had 2 TIA’s. I still have issues I’m continuously working on and I’m still recovering bit of me :blush:

To say nothing is de-motivating too I feel. And no one can tell you to what extent the damage, where when or how much of the damage can be repaired or is permanent, only time will tell. And no one can repair it but our brains themselves. So yes, we do need inspiration and motivation to keep pushing through or we’ll never recover any of it. Use it or lose it so the saying goes.

But it is a long, long, road to recovery. It takes years not months

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Hi @Hollie

Hollie? Hello

Don’t worry about elephants!!! Have a look on here and you will find flamingos and jaguars!!!

Also I have seen 100+ elephants in real life in the wild and zero polar bears or jaguars - few flamingos and I see one on zoom @BakersBunny often!!

So what is your favourite animal??!? I bet you can’t guess mine! :rofl: :rofl: :sweat_smile: :person_shrugging: :heart:

Welcome to the stroke survivor and carers community

YOU ARE NOT ALONE

The first few weeks / months are going to be a proper fog I’m afraid. I don;t know what you are experiencing but I’m feeling your frustration and pain.

Can I ask what and when or don’t bother just talk and be you and we will try and help!!!

If you feel like it have a look at this!

So sorry you’re on this journey. I am 11 months in from various stroke events and it is hard for my friends and family and me!!. but there are good and bad days!

Keep talking to us please and let us know if you need any more support

Kieran

:wink: :polar_bear:

Here is a picture of a polar bear to cheer you up!!

Kieran :polar_bear: :wink:

Nature | Polar Bear Sneak Attack | Season 37 | Episode 6 | PBS

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@Hollie

I am afraid to reply to your post. I truly understand what you are saying. Many of us feel something they are calling imposter syndrome. I call it guilt. I feel bad when I don’t do well enough to keep up with those who have not had strokes, or those who have but are doing better…as if I am not working hard enough to get better, or back to my former self. Then there is the guilt of doing making bigger strides than others are, having the ability to do more than they can. Or even the guilt of having life, when others have lost theirs. It all seems so unfair. All I can really do is empathize with you and I certainly do.

I hope you will find the supportive group here that I have. I do find it helpful. I also hope something you see here will lead you to something that helps your husband meet his goals of standing and walking, or at least gives him a sense of purpose.

I have asked myself at least a thousand times, Why am I still here? Sometimes when I am wondering what I can do with my life to make a difference, and others when I feel overwhelmed and don’t think I can do this life anymore. Being here has helped me in both situations.

I hope in some way we can be of service to you both.

Sending love and a welcome your way.

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I am 59, 13 months post stroke and I cannot walk.
But when I look at babies they wriggle and writhe on the floor, month after month
Seemingly without much progress. Eventually, 18 months later then suddenly walk.
Why is that ? Things just suddenly come together

We’re not babies, but our “new” brain is, and it’s pretty unfamiliar with its new job !
Maybe things will click… just not yet.
If you give me more details about the severity of the stroke, and what was affected, maybe I can offer a few words of encouragement…How old is your other half?

Good luck, ciao, Roland

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We’re here to offer inspiration and help others. We have a lot to offer.
And, of course, we must remember to help ourselves, firstly.
Then we can really get going, and make a difference to the world.

ciao, Roland

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@Hollie hi & welcome to the forum. It must be very difficult to see & hear lots of stories of progress when it’s not like that for your husband. Everyone recovers differently & in a different timeframe & for some recovery is extremely slow or just doesn’t happen to the level we’d like.

There is always hope but more importantly it’s about finding acceptance for where you’re at and making the best of it. Sounds easy but is anything but.

If I had one piece of advice it would be not to compare your husbands recovery to others but try & find the positives in what he can achieve; however small that may seem.

Sending my best wishes to you both.

Ann xx

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You’ve just described me to “T”, have you been rummaging around in my head while I was asleep :rofl:

Hospitals are a very emotional place to be in at the best of times. And, as a stroke patient or the carer of one in there, you have to remember that every other patient around you has their own story behind what’s influencing their progress positively or negatively. And the main influencing factor is the extent of the damage to their brain. So you can’t really compare yourself to be patient in the next bed.

As a strokee, you are your own surgeon operating to repair the damage done by your stroke. The doctors, nurses and physios are only there to assist and monitor, give food and medicine and catch you when you fall :wink:

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When I was in hospital, pretty much immobile, I saw the world pass by. There were lots of folk each with their own way of dealing with things. My method, not through choice I add, was to just lie there.

A guy in the bed opposite me struggled, not coping well, then died.

Another guy, pretty much disabled, struggled and wriggled to get off the bed apparently unaware that he would just end up on the floor in a heap.

A very interesting character, who could, unlike me, walk about, used to move into action in the middle of the night. He would swiftly collect together chairs, tables, anything movable and heap it all on top of his bed. The next step in his fiendish plan was to set off the fire alarm. Much running about, shouts and calls ensued before he was carted off to the ‘naughty boy’s room’.

I achieved this rather dodgy promotion to become one of the ‘naughty boys’ with the award of a stay in isolation when I contracted Norovirus and succeeded in projectile vomiting over a passing nurse.

There were no elephants in the room but plenty of noteworthy and memorable occurrences.

(Incidentally, knowing some people like the medical stuff :
Norovirus is a very contagious virus that causes vomiting and diarrhea . Anyone can get infected and sick with Norovirus which is sometimes called the “stomach flu” or “stomach bug”)

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Quote of the day:

My experience tells me to be prepared for this to happen, to accept it as part of where you are, to embrace it and maybe gain something each time, despite what others say, or even temporary discomfort, pain or bruising.

You have a choice, warm, comfy, cotton wool, or hard lessons, won in an uncompromising world.

Having said that, it is is important to be kind to yourself and even to go so far as to have a giggle every so often.

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I was thinking in terms of that very first time you try to get out of bed, before your broken mind has fully registered your legs are not going to hold you up :smile: After that, then I’m with you :grin: Because then you know what your body’s incapable of your brain is better prepared for the hard fall. :smile:

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I have had some very big bruises, grazes and very sore spots, I have worried my wife to death, only a couple of hours ago in the hallway I got distracted and did a huge wobble arms and legs flailing about almost going over, watched all the time by her, then managed to get properly upright again. I do worry her to death, but bless her, she doesn’t try to stop me. Each time, is horrendous but each time a little progress. At one time that would have definitely been me on the floor unable to get up, now I am far more able to recover from becoming unstable. As I say, practice makes perfect.

Best and safest thing would be to keep me in a padded cell for a few years, maybe?

Hmmmph !!

I must go make tomato soup, will be back later.

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Have a look at:

ALetterFromYourBrain.pdf (braininjurymn.org)

and be kind to your brain - it is doing it’s best.
Janet

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@Bobbi a promotion to one of the naughty boys…i’d never have believed it of you :grin::grin: i know there’s some serious stuff in your post nut it did make me chuckle. You have a way with words.

I hope @HHilary has recovered from your attpt to fly this afternoon :blush:

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I am definitely guilty of thinking they are there to fix me and put me back exactly as I was. They cannot, anymore than I can. But together, we can build a better me, regardless of the different abilities I have today versus the ones I had before. I am finally understanding that after all this time.

And yes, I have been talking to you in dreamland. I am learning from you because you are such a beautiful soul.

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@Hollie

I’m tagging you in this reply so hopefully you will get an email and you should have done anyway but keep talking to us please!!

K :polar_bear: :wink: :two_hearts:

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Welcome @Hollie & husband,

Sure 9 months is a long time with little progress but your husband should never give up!

I’m fortunate to have regained walking and movement of my arm within a few weeks but I still don’t have any feeling in my dominant hand fingertips. I still try every day to use my hand and even two and a half years post stroke can notice tiny improvements so haven’t given up hope of getting further improvements.

Everyone’s recovery is different but the key thing is not just giving up. I know it’s easier to say when much of the obvious physical things look to be almost ‘normal’ but believe me I feel anything but (compared to pre stroke).

I really hope your husband starts to see some signs of improvement soon to convince him that it’s worth the effort to keep trying.

It does seem wholly unfair that recovery rates vary but the sad fact is that they do. The thing I’m convinced of is that small improvements are almost certainly still happening so surely it is worth it to keep trying? If you asked a paralysed person would they keep working at physio if there was a 0.001% chance they could walk again don’t you think pretty much all of them would keep trying?

I’m so sorry if this doesn’t come across in the way that it is meant but I really really wish you and your husband all the best and hope he gets some signs to that the effort is worth it.

Good luck :crossed_fingers:

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I don’t know if this will give you any hope for the future of your husband but in another of @Bobbi’s replies, I saved from last May, well worth a read :smile:

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It’s sometimes just the little things – not the big things. The fact that you can catch yourself and not go down is real progress. Very proud of you.

Do you like to go outside and walk? Walking outdoors can liven us up. Well, it’s probably too cold for you now.

I love tomato soup, by the way! What are you having with it?

Take good care.

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Thanks @Matthew1798 I only just saw this post.
A day or two before Christmas after commenting that the falls seem to have come to an end I slid off the bed and ended up stranded on the floor again. Still had to struggle to get up, always the same.
I haven’t been getting outside and need to make an effort in that direction.
My tomato soup is delicious, nearly as delicious as the cheese toasty, pan fried, that Hilary makes to go with it.
We do like our food.

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