It's not just those who have had a stroke who are affected

When someone has had a stroke, those around them are also affected. It’s not just about the #strokesurvivors it’s also about us the carers.

Those who haven’t been directly affected by stroke, have no idea what the consequences of their actions have on all parties concerned.

The mental health of those we care for is of paramount important to us. Strokees (or is it strokies?), when they are cut off from what has become their norm, find it difficult to adapt and understand why they cannot access their support systems. It then falls upon the carer alone to help them through difficult and emotional times.

This is the situation I am in at the moment. I have the additional stress and worry about the person I care for. For the past three nights he has suffered from insomnia, which wakes me, even though he tries extremely hard not to disturb me, this makes us both cranky.

The stress raises his blood pressure, which in turn makes me worry about the possibility of another stroke.
I see the pain he is in on his affected side due to stress.
I have to bite my tongue when the frustration and upset he is dealing with spills over with harsh words that are not meant to hurt me, but is a way to vent his anger.

You don’t see my tears because of your actions. You don’t see the toll of mental anguish you have created for us.
You don’t understand the affect your actions have on someone who has had a brain injury.
You haven’t walked in our footsteps.

So all I ask is for a little compassion, a little understanding and a little empathy before you create a situation that doesn’t affect you, but does an incredible amount of harm to us



I know exactly what you mean - I have no Idea how @j.p.mac puts up with me and he is my very best friend.

I am here for you both as you know and JP asked me to pass on his regards (he’s working)

And of course Lea - just for you

K :polar_bear: :wink:

What Happened to SeaWorld's Two Lesbian Polar Bears Is Seriously  Heartbreaking


It’s the users that bring this forum to life. We are missing a very important person, and his presence is sorely missed. I hope balance and peace can be restored as soon as possible…

best wishes, Roland


I lived through this with my mother for almost 2 years after her stroke. My dad and I went through hell. The insomnia at night was unrelenting. My poor father was 76 years-old, going without sleep, and developed a urinary tract infection from never going to the bathroom as he couldn’t leave my mother’s side for even a minute at times. We loved my mother so, so much. That’s why we kept going on.

I am sorry the seas are rough. I know your struggle - please know that. I almost lost my mind taking care of my mother. I know it wasn’t her fault. The stroke was all just too much for us. Her mind just deteriorated over time, despite all the amazing physical recovery. Nothing ever made any sense to any of us. We just kept trying to move in the quicksand.

Outsiders never understand strokes. No one in my mother’s family ever understand what was happening to her and to my and my dad. They did things that were inconsiderate at times.

I’m hoping for much better days for you. May the sun shine soon for you both.


I know this pain all too well with my mother. I saw it in Dad’s eyes, too, when he couldn’t get an hour’s worth of rest. My mother would beg to die for hours in the night and poor Dad didn’t know what to do but pray that morning comes as fast as possible. I would come downstairs and sit with her but to no avail. She would become irrational and combative. I just would cry, and go back to bed.

My poor mother - god bless her. Her stroke took everything from her - everything. It wasn’t fair. Even though she recovered physically so, so well, her mind was forever gone.


Yours is the second post on here that has brought me to tears today, the other one being @Eboni’s! She had good reason and I hope and pray :pray: she can get the help she really needs.

You and Simon however should never have been put in this position and I’m shocked and disappointed that you have been. It shows a lack of caring and tolerance, a lack of true understanding of the realities of a stroke for the survivors and the consequences not thought through.

Communication is the key along with a little lateral thinking, because you can’t police a stroke forum in the same way as your regular social platforms. It’s simple, our brains don’t work that way anymore!

In the mean time it’s the weekend for you and Simon, set this aside and enjoy yourselves. And remember what I said, there’s nothing as bad as a bad marriage :wink:


They do not see my tears for you both, or for myself and the rest of us who truly are missing one of the people who has spent so much time and effort making others feel welcome, helping them get to the information they need in order to recover, giving the empathy and understanding we all need in order to be well and coming up with ideas that help us navigate life in an easier way when we can’t get through it in our former ways. I am heartbroken, hurt, and angry at the same time. Such a senseless shame.


Aww thanks @KGB, we (carers) try to remain like a polar bear nice and cool, but sometimes we just have to have a bite when the bear is poked :joy:


I mean, Matthew,

the terrible truth is that a severe stroke is so devastating. What I have had to put up with this year is far harder than if they had just not stopped the bleeding and the stroke finished me off. That would be the easiest solution, and letting me off lightly. Except that it would not have suited my wife. Even on the best day, especially in a photo, it looks like there is relatively little to complain about… until you see me trying to walk.

So there’s a big difference from an assessment made in the outside world and what “we” really feel on the inside. Of course, you would never invite someone from the outside world to share your pain… though it happens to an extent, like it or not. Last night I coped a little better with my eyelid pain, but it’s no easy matter.

I can only wish that stroke warriors around the world find the will and courage to fight on. And that carers and close ones learn to support them, and learn to fight along-side, and share the journey, including the little gains and conquests that are made along the way.

Strokes are cruel, unlike a broken leg, or sprain, that may takes months to mend, but at least doesn’t take years just to improve. May your mother rest in peace, and may you remember the good times more than the bad times. Bad happens to us all in the end, even if nature makes us ready for it. In the end all that we need remember are the good days. That’s why we live, I guess, to enjoy life while we’re at it.

Good luck to all, ciao, Roland


…And in the midst of all this our hero still sends me an idea… a thought, a thread to follow about my eyelid pain. I’m not blaming anyone for not knowing what to do, since my condition is so bizarre… but the only lead has come from the most helpful person (or one of the most helpful) on this site (who is not on this site).

Obviously not everyone is on the same page. So, could we all turn to the same page?

ciao, Roland


Or at the very least agree that we should be on page 20 but somehow ended up back on page 15 again so let’s get back on track as soon as possible?

But actually Roland’s is much better so ignore me :rofl: :polar_bear:


One of the things I have noticed, for me, cognitively post stroke is that the brain likes to know what it is doing. The brain prefers the easiest route forwards as that uses the least amount of energy, and that provides relief from the effort required to make connections. If I order something online, and for whatever reason, I must return it. My heart sinks. The return process requires that my brain must get around a process that it struggles with post stroke. But also it must accept that the way forward has been disrupted. This can cause a significant amount of anguish for me. So, in my trivial analogy, I can feel for what Simon is going through. It is only now, three years on, that I have begun working on these kind of cognitive issues post stroke.


Oh thanks goodness it’s not just me then, I’m not the only one :smiley:
It’s why I say my brain is not ready yet when Simon invites me onto zoom. Just the thought process for it gets into such a tangled mess in my head and I get nowhere.
And like you, I’m working on it because obviously that’s only one small example :face_with_spiral_eyes:


@rups @EmeraldEyes

I so get the online order thing - it is often actually just a bloody hassle for me to arrange for the item to be returned etc etc and that’s more than I like to deal with. bloody broken mini fan - £5.99 but so what!!!

I try and think hard before I buy things so I don’t have to return things that I change my mind about and of course that takes mental effort ha ha :roll_eyes: :roll_eyes: :exploding_head:

I order most of my stuff from Amazon and I’ve got the customer service number and so I call them and say I’m partially sighted I’m not happy blah blah blah and often they say ok we’ll just refund you and don’t bother to return the item… Worth a try for other companys too?

Amazon Customer Service - 0800 279 7234

K :wink: :polar_bear:


Hi there!

This happens to people who have severe anxiety/panic attacks. Their brain just shuts down. I can’t count change in front of people, if I’m nervous. My brain just shuts off, and I never had a stroke.

I understand your issues quite well because of my mother’s stroke. She could play Solitaire, but couldn’t rationalize on very simple things sometimes. It was really bizarre.

You just have to keep working on your issues. You might never get there 100% or even 80%; however, if you can get 50 or 60% better on something, that is a real achievement. Your life will be much smoother and easier. You can do it!

Take good care of yourself.


Yes, Roland, what you say is very, very true: bad things will end up happening to everyone. Nothing is truer. We will all suffer in life. And we will all die. Not trying to be negative, but it is true. It is comforting to know this, because it makes us realise that we are all the same (we’re all in it together somehow).


Hi Matthew,

we’re in the same boat, but with old age our brains get tired of life, and we finally learn acceptance. We don’t care anymore, except that if our time comes sooner, and suddenly, we suffer less, hopefully.

Somebody (maybe it’s a Chinese saying) once told me that a man knows when he has 2 years left to live. When I heard this, I got scared, and wondered if I had less than 2 years left. Then I realized that I was questioning the next two years; I couldn’t see the future. Then I had a stroke… hhhmm… didn’t see that coming. Now every minute of life counts… it’s like a bonus life… come to think of it … I am reborn. And if I can get my act together and make progress, I might just enjoy life once more.

Cheers, mate, ciao, Roland



I hope with all my heart that things get better for you. Keep believing and trusting your practice (qigong, hip rotation, meditation, etc.). There is profound wisdom in Chinese proverbs, medicine, etc. I do qigong every day. It helps so much, but the effects seem to wear off a few hours after I do a practice.

I think of you all on here quite often (particularly the regulars). I am connected to you all because of what happened to my dear mother.

Yes, with old age comes acceptance. I know this from older people in my family. I had a grandmother in her 90s who was more than ready to go. She had no fear of death. Also, her sister was 100, and said there was nothing else to do in life, as she had done it all. They both peacefully accepted their deaths. So, you’re right about that. I have an aunt who is now 86 with a heart condition, and she has told me that she is ready to go. She has no fear of death anymore. She has had a good life.

Take good care and stay warm.


Great idea I think I might be Thier next customer caller, I really struggle with returns live in the middle of nowhere and can’t drive either,what a good idea, best wishes