Hi all, just trying to get my head my round this new forum. Am I missing something?
Welcome to My Stroke Guide!
Please could I ask what is is you think you're missing? you have successfully created a new forum, but maybe you mean you aren't sure whether you have created it in the correct place?
The forums are related to any individual topic - stroke, or non stroke related and a great place to generate conversations on these topics, where users are able to share experiences and provide support for each other.
If you want to go through the site in more detail, you could email email@example.com
I hope this helps.
It certainly 'aint easy! Trying out all sorts of things but there doesn't seem to be any flow.
Please be assured we are making some changes to our social wall and forums, which I hope will make it much easier for you to use. We have taken your comments on board as well, and do really appreciate your feedback - the site is very new still, so these suggestions are really helpful to make My Stroke Guide a success!
I have emailed you - I wonder if you received it ok?
Had had a stoke about 3 months ago. I thought I would be better by now, but unfornutley & I am not. Thought I would be better at 2 months & now it is at 3 mths and little difference. Was trying to receive results in 2 months but it looks havent change after 3 months. I have know idea when this when change. I suffer asphia at present & contertasion issue. Hard writing this. Now ideas at all?
Are you a member of a stroke group? Some groups hold communication classes, which may help you? Otherwise, you could speak to your GP to see if you can be referred to a speech and language therapist, if you're not already seeing one?
Hi my name is Dharl i had a stroke 29th Dec. last year.
Can anyone suggest anything to help with fatigue??
Charlotte, Welcome to the forum. Very little is known about post stroke fatigue and some of us are affected more than others. Mine hit the second day out of hospital and is still with me nearly three years later. It has eased, but has not gone away. Mine comes every day about 11am, when I have only been up a few hours. I last until 1pm and then have an hour in bed. After that, I can stay up till 11pm.
All I can say is that fatigue is the brain’s way of saying it needs a rest. I go with what my body says and do not work my way through it. It is something I have learnt to live with.
i had mine in Oct 18 and whilst the fatigue is improving its still a bug bear as it comes on for no reason at all. If you look at the Stoke association site here https://www.stroke.org.uk/resources/fatigue-after-stroke the fact sheet you can down load did help me and my family understand it a bit more.
Hope that helps
Thanks for that Simon i have just read the fact sheet & did find it helpful
Dharl, As you know, post stroke fatigue cannot be explained other than the brain ‘needing to rest’. Fatigue hit me on my first day home from hospital and, in three years, has not left me. It affects people in different ways. Mine starts to impact after I have been up for just four hours. In the early days I would go back to bed and sleep for about four hours or so. My physio then recommended an hour’s bed rest, with no deep sleep. That seems to work. I go up at about 1pm, rest until twoish, then get up again. I can then last till about 11.30pm.
I don’t fight it anymore, but go with the flow. That seems to work for me and does not affect my sleeping at night. I have learnt to live with it.
I agree with Deigh, they have changed all sorts of things, but there is no flow any more. We are only the users and many of us have asked why it is so difficult to navigate now, and why if it is not working do they just revert to how it was.
When I first came on the forum it was in the "old" format and I could use it. But it was very hard for me to do anything like send an email because my brain didnt work too well. Isnt that exactly where this forum is so brilliant ? Helping at the early stages. I am much more capable now, but I cant fathom out this new forum. I would like to help newcomers but I just can not follow the strings. This is very sad indeed. Stroke survivors need the company and its only another SS who understands. On the other hand, the newish SA leaflets are very good. A big improvement in my opinion.
best wishes Colin
Many thanks for that I have found that out you are spot on its exactly what i do its been 12 months for me im still in bed each day for about 3pm for about 1 hour then in bed for 11pm Kind regards Dharl
In my opinion all a survivor needs from a forum is sympathetic replies and advice from fellow survivors. This former site did this ideally. Now this has changed so that there is more involvement by experts and this should be left to hospitals.
Hi my name is yours i had my stroke in Oct the fatigued audio my eyes r so tired I cud sleep all day not much u can do about it stroke causes this