We wanted to highlight that the 29 October is World Stroke Day. Here at the Stroke Association our focus this year is on stroke survivors sharing their story and truths around post-stroke recovery.
Our Online Community is a safe space for you to do this. Have you shared your story with us already?
If you haven’t shared your story with us yet, don’t worry. We know it can be a nerve-wracking thing to do. Our community is here for you to use in any way that feels comfortable for you. So, if you’re just reading posts, that’s amazing, we hope you’ll learn loads! If you’re just starting out posting, that’s great. We hope it helps to share your thoughts! Or if you’re a more seasoned poster and offering advice, that’s awesome, we’re sure your stories and advice are helping others!
We also have lots of different types of support which may suit your needs, ranging from volunteer calls to our support line or groups.
For me this forum has been a place to speak my mind, tell my story, ask questions, make friends, and feel a part of an active, helpful, welcoming ever growing community.
It is a valuable part of my life. There are others here who have been around longer than I. They visit regularly and add a comment every now and again. They are experienced in dealing with the effects of stroke long term and can give a valuable indication of what the future is likely to look like. So the value is both in the meeting place and in those who visit here.
Oh, incidentally there are a few others who help keep it all running smoothly. In particular I am referring to @Anna_Moderator@Nicola_Moderator@Alex_Moderator
but also those working behind the scenes including the extensive staff of the Stroke Association.
Stroke is generally a truly devastating, frightening, destructive event and any help for those affected makes life more possible more bearable.
My story is on here for people to read. I just want to say ahead of tomorrow a massive thank you to @Anna_Moderator and @Nicola_Moderator (and Lisa) because the support I received from the online activities was amazing. I made friends and lost that awful feeling of isolation that you’re left with when you leave hospital as a young stroke survivor.
The forum has also been a huge help and has helped me connect with other young stroke survivors too. It’s so handy to be able to ask questions or look for answers when you think of them without having to worry about derailing an online activity.
Although I’ve only posted a couple of times since my stroke in 2018, I found more support and advice on here with the community than my doctor offered. When I felt like I was not being listened to and fobbed off by my GP, people on here gave me support, just to have someone that understands how you feel is a great help.
I’ve been very fortunate to be able to carry on after my stroke and from the outside no one notices, but as with others it’s the hidden side effects that some health professionals just don’t seem to grasp, my GP insists stroke fatigue is not a thing.
Wishing everyone all the best and speedy recoveries
again thank you to everyone who keeps this forum running and thank you to everyone who has helped me realise where I am today and get perspective on my life. I wake up every day realising how lucky I am and moreover with a greater appreciation of life.
Hello @dazc - Maybe you have got over this, but if this (stroke fatigue) is bothering you and your GP is in denial of its existence, perhaps you might want to consider finding another GP (if possible). Or, you may, if you fancy the challenge, want to try to educate your GP. For example, there is information out there including from NHS sources such as the Royal Berkshire NHS Foundation Trust, Bradford Teaching Hospitals NHS Foundation Trust as well as stroke.org and the Stroke Association.
I don’t know what help is offered to stroke survivors when it comes to fighting stroke fatigue, but if it is available and your doctor is in denial, you deserve better and there are options.
I’d like to add my thanks to all who make this forum happen, the moderators, the wonderful members and the Stroke Association. The support and advice that I’ve received has made a huge difference to my recovery, and will help many more in future. None of us wanted a reason to be here, but all of us should be proud of what we contribute.
The topics covered along with the truly amazing stories have helped me no end as I strive to make the most of what was a “nightmare” for me and everyone close to me.
I am almost 6 months in from my “experience” and am recovering well. Every day I have a smile on my face knowing that there is a community full of great support and guidance close by.
I am almost 4 years on from my stroke now and this forum still helps and supports me. I learn so much from everyone & in the early days I wouldn’t have known what to do without this forum. It helped me understand some of the symptoms I was experiencing & it waa great to know I wasn’t going made after all.
We just wanted to say how heart warming it’s been to see all of your responses to this.
We’re pleased that you’ve all found this community helpful for your recovery and that really is down to all of you and your contributions. We read your posts to each other everyday and it’s wonderful to see the amount of support you give.
We who have experienced stroke are ordinary people. Our lives have been radically affected but we still have the same human feelings.
It is very complex but we can be here for one another. We can show those new on the scene that it is possible to find order in the chaos of it all. It is possible to banish fear and isolation.
All of this is fine but without this Forum, which helps us find one another and ultimately a way forward, it could and would not be possible.
So I want to say thanks to the Stroke Association for providing a safe home for our Online Community.
Hi all , just jumped on to say a big thank you to all of you and those who keep the wheels turning behind the scene.
I’m 8 years post stroke and our online community is still my “go to” if I need any information or advice or when I just need to have a rant or I need a shoulder to cry on.
Stroke survivors are told that stroke fatigue is just part of having the stroke. No one understands, unless they have gone through it. I suffer it and its dreadful. I am almost a year on from my stroke and its still awful. But tomorrow another day. Happiness to everyone
I am not a stroke survivor but have read a lot of posts on this subject on this forum.
The consensus is there isn’t much help out there, but I found a few things on the internet and included a couple of links in my post including from NHS Royal Berkshire Foundation Trust.
The below is from that document and it is a six step help to manage stroke fatigue. I cannot comment on its effectiveness, but it’s there if any stroke survivor wishes to try it.
Hi @ManjiB
Thankyou for the links, the pdf is great
I’m 7 1/2 years since my stroke and have just learnt to live with it now, I can tell when the feelings start and just make sure I sit down and take a rest.
I’ve given up with my GP, after he told me the NHS had spent enough on me after my initial treatment when I had the stroke,CT, MRI scans and appointment with Ophthalmologist. My optician recommended seeing a neurologist, as did the ophthalmologist at the hospital, but because the ophthalmologist did not refer me, my doctor would not. My optician thinks my double vision is down to neurological problems, but again I’ve just learnt to cope. I have managed to keep my Car & HGV licence and pass the tests from DVLA and their medical team, so I just keep plodding on.
Another massive thank you to those who run this forum, the Stroke Association and the wonderful contributors.
I’m the wife of a stroke survivor and we’re just over a year into our ‘journey’. When things felt at their bleakest in the early months the kind, reassuring and supportive words of those with lived experience on this forum kept me going and I’ll be forever grateful. A year on and Gary has taken his first few tentative steps!! So I hope we can offer hope to others in their early frightening days xxx
Gosh, has it been a year already. I do wish the stroke doctors would eliminate the word “never” when discussing a stroke survivors future, they nearly always get it wrong..and your hubby has just wiped their eye by walking again😄
That’s two woryhwhile celebrations right there, first anniversary and walking
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