Hello.
This is all very new to me as I had a intercebral hemorrhagic stroke just under a month ago.
The consultant can’t explain why it happened and the CT scans thankfully came back normal. But it has happened and I can see my mouth still lopsided so it definitely happened.
Today I’m having a bad day I think. I feel a bit dizzy and exhausted. It’s like it’s all really hit me today.
The heat isn’t helping but I felt ok yesterday!
Is this how it goes?
I have probably over done it recently trying to get to a more normal life and not resting enough.
Just wondering if this is what happens? Good days then boom,you feel rubbish??
I didn’t sleep well last night and look really tired compared to yesterday. Can it just hit you out of the blue?
I’ve been all over the place emotionally as it was such a shock but today is the first time I feel really exhausted and a bit defeated.
Sorry for moaning. I’m just having a bit of a day I guess.
Any one got any advice as to how to deal with this?
Thank you,
Sarah
Please don’t feel defeated. Post stroke fatigue is common and made worse by high temperatures. It eases over time but I still have post stroke fatigue after six years
Hello Sarah, I can relate to this. My stroke diagnosis was over 4 years ago. Initially I tried to do as much as I could but kept getting the days of shear exhaustion. For me it has been a learning process. I have learned to plan several days in advance. The key thing for me is to plan ‘rest days’ into my schedule because I know from experience I will get tired. For example, I know if I go out on shopping trip then the next day I must do something of a sedentary nature. I am learning ways to keep my mind occupied with minimal physical effort (participating in this forum is an example of that).
Thank you! It is very hot today ( well for Scotland) and don’t think that is helping. Thanks for replying.
Sarah
Thank you! I guess I have just overdone it as I felt a bit better on the last few days
Been out the last couple of days including a walk by the sea.
I think I’ve just tried to do too much too soon. It’s a balancing act I guess.
Will remember to allow some rest time from now. Thanks for replying. I’m so glad I found this forum. It’s such a great help.
Sarah
Shwmae @Sarah59, neurological-fatigue seems to be the most common thing we share as stroke survivors. Your stroke is fairly recent, so for six months the brain is trying to do what it can to make things right but it slows down after six months, and the rest will be up to you as the brain will have finished what it can do without additional help from you. However, gentle physiotherapy in small steps and constantly is a good thing to guide the brain over the first six month period, especially with symptoms that are the most troubling.
Rest and sleep are essential. I know it is difficult. After I came out of hospital, for the first six months, there were days I felt as if I hadn’t had a stroke at all. I don’t know what exactly is happening upstairs when this occurs but what I do know is, and I was a bit guilty of it, is to avoid the boom-bust cycle. It’s essential to rest before you get fatigued, or just on the peripheral of fatigue setting in. Otherwise, the connections don’t spark, and you’ll find yourself with residual symptoms that require addressing down the track. During those six months the brain is test flying what it thinks it needs to do, but this doesn’t mean it will fly smoothly when it needs to put into practice all that’s tested in the long run.
A good night sleep, and a rest during the day or intermittent resting will give the brain opportunity to be satisfied with its progress. I slept for about eleven to thirteen hours after the stroke, and also napped during the day. I did this for almost a year and half really. Everyone is different but your brain will give you signals when it needs reprieve, and I think @Pds uses an egg-timer to approach tasks with in order to avoid running overtime. I did activities in one hour bursts to begin with, built up from that to three hours, and now I can last the whole day usually without needing a nap, but I do take the time to sit down and empty my brain.
@Sarah59 it is very common for the fatigue to hit out the blue. It’s a balancing act between doing things & ensuring you get enough rest. I know when I’ve overdone it I can be wiped put for a week. To help avoid boom & bust Tey planning, prioritising & pacing yourself. I keep a diary so I can look back on what I’ve done & see what has triggered the fatigue. If I have to go out I generally have to rest the day before & for a few days after. You will find your limits in time but you’ll probably have some bad days along the way. Like you I feel defeated on those bad days but that feeling doesn’t last. Take it easy xxx
Hi Sarah, almost like me … I had a brain bleed too, as I was told,a very tiny one in the brain, and another which sounded like a sub arachnid haemorrhage (was told that is between the brain and the skull in the “liquid” part … yes it is a complete shock isn’t it, so I do understand … and leaves me just sort of waiting for another.i have now read lots of posts on here and finding out things, especially about the fatigue which I thought would go within a few weeks … I am in North East and yes like Scotland, far too hot up here. …take care and let’s hope we all feel better very soon xx
Hello @Rups @Mrs5K @Ismeval @Mahoney
Thank you all so much for your encouragement!!
I’m happy to say that I feel so much better today. A good night’s sleep.
I really appreciate you all answering and offering advice and support as this has all been so incredibly overwhelming for me.
Thank you all.
I hope you are all feeling good today.
I now know about bust and boom from you and will do my best to pace myself a bit better. And the work of the brain trying to recover too.
Mine was a tiny bleed I’m told, but enough to affect my mouth working properly so I guess my brain is working hard to repair now.
It’s lovely to have this space to share experiences. I so very much appreciate you taking the time to answer and cheer me up!! Xxx
@Sarah59 good to hear you’re feeling brighter today. A good nights sleep is always welcome. Glad you found our advice helpful. I find this forum great for advice & support & just a general kick up the backside when I’m being silly 
a stroke, however small, is very overwhelming. I’m almost 9 months in & still struggle with some of it. Tears never seem very far away.
Hope you have a lovely weekend.
Best wishes
Ann xx
Dim problem @Sarah59, the medical establishment is so run off their feet that it’s a benefit having a space we can tap into for advice and shared experience. Our pool of knowledge is pretty deep, and often supersedes that of some medical professionals. As the world of undamaged brains rushes ever forwards, it’s good to know we all have each other’s backs.
Thanks. It’s nice to be in good company even if it does involve having a stroke.
Have a lovely weekend!
Thanks @Mrs5K /Ann. I can’t believe the difference a good sleep seems to have made to me today.
I hope you have a lovely weekend.
Sarah xx
Yes it’s quite common to feel like you do stroke fatguie is one of the hardest to control, the more you do the worse it gets. My stroke team taught me to manage it is stop before you get too tired do not try to push though it ,it only make the next day harder. Unfortunately there is no time limit in this some overcome it must do not, it’s gets a bit easier but that is one of the many downsides to a stroke with kind regards des
Thanks @Des_murphy .
I guess I will need to learn to pace myself a bit better.It’s tempting to try to do too much but I’ve learnt that won’t work now.
Thanks for replying,
Sarah
Hi Sarah. Fatigue is part and parcel of having a stroke. It is a shock when you have one, and takes time to adjust. Just try to pace yourself and don’t overdo things. You will learn when you need to rest and things will improve but it takes time
You will get many replies to this mail and I’m sure they will all agree on why these sudden slip backs occur because it seems to be a regular event in stroke victims lives . I’m in my eight year of recovery and I’ve learned the hard way not to overdo things or face the consequences, but even if I’m being sensible there are days that I’d rather do without. and I just have to take them in my stride.
Regards
Deigh
Hi Sarah. Yes fatigue is one of the hardest things to come to terms with as it hits you apparently random . Our local hospital is offering Fatigue management sessions for post Stroke Survivors (haven’t started yet) so it must be a common issue. I have found its not just the physical activities that can drain you, but even social interaction (keeping up with conversations etc) and other mental work (for me, playing the keyboard). So they need to be factored into how much ‘juice’ your ‘alert batteries’ have, before needing re-charging. 12 months on, its approximately an hour a day nap for me, when I can ‘zonk’. Somedays just 20-30 mins if I have been inactive earlier (but read earlier for what I take as ‘active’). So difficult to plan your days, unfortunately. It is getting slightly better though, over time.
i often find mental activities such as interacting with others on a Zoom call just as tiring as physical ones - I can walk about a mile quite easily but ask me to make vaguely important decisions and I need to zonk out afterwards.
The Stroke Nurse seems to think that fatigue will wear off and certainly it is getting a bit better - on the other hand it is still there and I suspect it is for many of her patients but I don’t expect a local fatigue management group would be very practical as the distances involved for many people would mean that it took them all day to get to it which would be very tiring
Thanks @Deigh @FionaB1 and
@Retrokeyplayer for taking the time to answer. It seems the secret is to recognise that tiredness is a common event and to plan accordingly.
I guess I will learn how to pace myself better in the next wee while.
In the meantime all best wishes to you all and hope everyone is keeping well.
Thanks,
Sarah