Feeling lost

TalkStroke closes on 5 February 2018

As My Stroke Guide has grown into a trusted online stroke community and support tool, we’re closing TalkStroke and asking you to register for My Stroke Guide. It will be easier for you to get all the online support you need, all in one place.

This unique, custom-built tool gives you the opportunity to create your own social profile, make friends with other users and message them directly. There are many ways to interact with one another, such as using the My social forum, posting on the public social wall and joining specific groups based on your interests.

We hope you register for My Stroke Guide, which is quick, easy and takes no longer than five minutes. You can register whenever you want to – either before 5 February or after the closure. You’ll benefit from using all the new features and keep the conversation alive in a supportive and welcoming community.

We’d like to thank you for all your commitment to TalkStroke and we hope you join us soon on My Stroke Guide, our trusted online stroke community and support tool.

If you have any questions, please call us on 0300 222 5707 or email us on mystrokeguide@stroke.org.uk

My husband had a stroke 15 months ago, he had done really well and I am so proud of him but emotionally he does not seem to see when I am struggling, I have to guide him on what needs doing each day, when my friends ask who looks after me, I lie, I feel guilty feeling like this as he cannot help how things are but I feel ver lost st the moment

Hi Julie Ann

So sorry to hear of your husband's stroke. I often feel it is the carers who get forgotten in all this.

When I had my stroke, I eventually had to raise my wife's concerns with my own voice before they were addressed. She'd hide from me how terrified she felt and only told me about it some time afterwards. It's so, so hard, isn't it.

We all need help and support though, at times. Is there anyone from your friends or family to whom you feel you might be able to open up at some point, if you can get past the guilty feelings? Just wondering.

Then of course there's us. The people on this forum are all good people. Feel free to bounce your worries off us here. May I ask, what tends to make you struggle the most do you think?

There will be ups and downs in all this, but I do hope things improve from where you are at the moment.

Best wishes
Kevin

Thank you Kevin. It doesn't feel right complaining when I am not the one who has had a stroke, I feel disloyal. What I have struggled with is that my life has changed and I worry about the future, I have to be the strong one and keep things rolling, which I really dont mind, just sometimes I feel overwhelmed. Reading back I sound so selfish. I have tried replying you you many times today but each time, delete my reply. If I find it hard on this site how will it sound to friends and family?

Ok.

Your struggles are real, JulieAnn. There will always be people in this world with struggles greater than yours. That doesn't mean you aren't also finding things tough. That doesn't mean you're entitled to no support whatsoever, that you can't voice your feelings of being overwhelmed and say you could use a bit of support. You very much are entitled to say those things, and good friends will understand that it is hard for you. Do you think that is maybe why they asked who is supporting you?

On airplanes, if there is a crash you're supposed to put your own oxygen mask on first before helping others. Is that selfish because you make sure you're stable first, or is it sensible because you're better able to help others when you're more stable yourself?

Send me a private message if you'd rather talk privately. I'm not a professional at this stuff, but I'll lend a listening ear.

Best wishes
Kevin

Thank you Kevin, it has been good speaking to you, I will try to speak to a friend and will will private message you soon

Wishing you very good luck Julie Ann, and yes do please let me know how it goes.

Julie, I think it must be harder for a carer than a stroke victim. I had a stroke three years ago and once I started to get my life under control I started also to realise the situation through my wife's eyes. She must have felt pretty helpless initially but got to grips with the problem by wrapping anti slip material around my cutlery to make it easier to hold and also helped me to solve other problems. I would be helpless without her but I insisted she kept up her social life and as a result she stayed with her Red Hat group and scrabble meetings. She also attended Quiz evenings and was allowed to keep her mobile phone on in case I needed her.
I believe that doing all these things has made life a lot fairer for her.
Deigh

Thank you Deigh
I appreciate your comments, I have a job two mornings s week and have just taken a position volunteering one afternoon a week, it helps to get back into the real world if only for a couple of hours. I think my husband is beginning to see that it is difficult for me too. But it is a slow journey, part of the feelings for us both is anger ‘why us”? I appreciate your comments. Julie

Julie, does your husband read the stroke discussions? You should try to get him to be a contributor. My wife is an electronic Luddite and can even mess up an ATM. I relate to her much of what I read here just to keep her in the loop and have great difficulty getting her to reply to personal mail in my inbox. I have to set the screen and keyboard up and remind her which keys to press and what to do with the cursor and then stay within yelling distance when something goes wrong!
Such Fun.
Deigh

Afternoon Deigh, I don’t share this with him, just need a place where I can talk without worrying about upsetting him that I cannot discuss everything with him. We do talk and can be quite open.

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Stroke Association is a Company Limited by Guarantee, registered in England and Wales (No 61274). Registered office: Stroke Association House, 240 City Road, London EC1V 2PR.

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