I would buy a badge,my stroke was 18months ago and people say oooh you look well,but I walk with a stick have eyesight and some hearing loss and memory/fatigue issues, so a badge would save having to keep explaining. A great idea.x
I survived my stroke in December 2018 and have kept going with physio to noebe able to walk unaided and help with some basic domestic chores but yes fatigue sets in every day - particularly the effort of having a shower or carrying shopping back from the local stores and yes I get folk telling me I look well as the long term effects are not evident to them.
If you can afford to buy one,I would recommend a static exercise bike,on which I am finding that some time each day is very beneficial - keeping my affected leg supple,lowering my blood pressure and even in bad weather when an outside walk is not practical,it's keeping me active -
My best wishes to you all and I hope that even as time goes by - and we all struggle through other problems in these testing times - that you can find the strength and positive mental strength to keep going and trying to improve your fitness despite the challenges of fatigue and lack of understanding of the longer term effects of a stroke.
Kind regards
Chris
It would be a good idea to produce a brooch with a simple sentence...such as
ive had a stroke.some days can be struggle.
That's a lovely Idea Rozzer, or a wristband.
Hi all
My stroke happened 18 is months ago, felt so unwell, but just carried on , until I sat myself down and researched what on earth was going on with my body, it wasn't good. I do yoga regularly to keep the limbs moving, do physio exercises given to me by my physiotherapist, I do not want to get any worse. Tiredness takes over and then I just shut down, it's my body's way of coping. I try to fight it, but have learnt that if I need to rest, I have to rest. I need a personal trainer, but that will not ever happen. So be kind to yourselves your mind, body, and spirit. If you need to go slower than the rest, it does not matter, go slow, and be gentle to you. Hugs to everyone.
Fatigue is so debilitating and all-encompassing. In the early days post-stroke (which was ten and a half years ago now), a shower was a day's work. Setting targets to try to extend the walking range seemed such a good idea, but led, a number of times, to overdoing things to the point of not being able to move the next day. I'm one of the fortunate ones. After ten months, the fatigue was largely replaced by tiredness. They are not the same thing. I could now (quite deliberately) do things to make me tired, knowing that it would not lead to fatigue! Headaches were almost an everyday occurence pre-stroke. I haven't had one since. The emotions, while much improved, can still be a bit 'fragile' on occasion.
If I have a very emotional day, or do something that brings back the memories strongly, then the fatigue can set in, but only now for an hour or so. The yawns are so huge, I'm afraid I might swallow myself.
Concentrate on what we can now do, and not what we once were! We have so much for which to be thankful!
Richest blessings on your recovery journey, everyone! 
Thank you Stewart.
I haven't really thought about tired as opposed to fatigued.
like you, I had headaches, mostly migraines, before stroke but now they are rare. I wonder if that's the blood thinners. It is lovely to have the migraines minimised.
Do you have good sleep ? I sleep quite well. I realized that recovery started with adequate sleep and I worked for months to achieve good sleep. I still get a lot of bad dreams. The bad dreams spoil often spoil the day.
like you, the emotionality still pops up it's strange head, but not too often.
other illnesses do confuse me. I spent two years not knowing whether it was stroke fatigue or the effects of an aortic stenosis. I now grasp that it's still stroke related, the heart has repaired.
my after stroke diagnosis referred to small vessel disease. I guess that's a part of getting old.
there is a lovely sunrise today, turning the neighbours trees a fantastic red and orange,
best wishes Colin
I had a stroke in November '19 and was lucky, recovering quite quickly. I got back to my u3a walking group and yoga classes quickly, may be too quickly. I developed really bad back ache which an osteopath reckons is caused by pushing myself too hard and getting tired out. He put me on a regime of three daily walks of only 10 minutes each instead of going for 6 mile walks as i had done, finishing up exhausted and aching. He told me never to push beyond feeling comfortable and doing short walks regularly until the body felt ready to do more. It worked as far as the back ache is concerned but i feel frustrated that i cannot yet do more. May be i am being too ambitious. the lack of energy is also really getting to me. Nobody had mentioned that full recovery could take this long. I find it hard to get used to. I know I am very lucky. I can walk, do yoga in a more limited way and do most things i want to do though i sometimes pay for it the next day!
This is also the advice i was given by the osteopath i went to see about my back ache:don't compare to before the stroke, look at what you can do now and build on that. It's good advice but not always easy to follow. I agree with the yawns. I never used to yawn like i do now! Can be quite embarrassing. Iam constantly surprised at the amount of after-effects there are from the stroke, even after nearly two years. I was 72 when i had the stroke so may be some of it is about getting older anyway. But how do i know?!
I am surprised that you have overdone things to such an extent. Are you elderly, in which case it would make more sense, perhaps your excess effort has afflicted parts of your body. Not at all sure.
stroke fatigue can last for tens of years, perhaps we would not want to hear that shortly after a stroke.
do keep in mind that we get tired and we get fatigued, which is not the same.
Overall, if you had been negative then your excellent progress would never have happened.
we never get back to the same as before stroke. Your variation is certainly interesting. I think you should give yourself a pat on the back getting on so well
carry on smiling, carry on being positive and please carry on communicating with us all.
colin
When we do an activity like brushing our teeth, our brains use hundreds of neurons through neurotransmission to send signals to the mouth, coordinate the hand, if we are looking in the mirror, the occipital lobe is on full fire observing our face, our thoughts might be on other things which requires language function and other parts of the cerebrum, further firing up other neurons, our feet need to balance on the ground calling in the cerebellum, and the hippocampus procedural memory is whirring the learnt memory of brushing teeth. That's a lot of energy consumption for a damaged brain which isn't firing properly. So, you can imagine what happens when it's pushed beyond its limit, so the brain needs a little rest in order to sort itself out. They saying overdoing things can make things worse, but I don't know how exactly, perhaps it doesn't give a chance for the brain to get things right. I hope you find the right balance. Neurofatigue is a result of dormant neurons trying to get back online, and the effort the brain has to go through to do that. They say do little, often.
Mine too..I left my husband! I couldn't stand the nasty comments and disbelief any longer.
Thanks for your kind thoughts.
Sometimes I think it's emotional problems that are the hardest to deal with especially if other family members show very little desire to be considerate or understanding if I find it difficult to do certain things...or feel ill or exhausted I've been told I don't try hard enough.....thank God for this site. It's very supportive and kind.
Seems to be a theme with partners and close people, not understanding, my partner always says you need to exercise more that way you won’t feel like you do, amd I still played semi professional football until my stroke so I’d love to be able to exercise more. Think they all need sending on a training course on just how we feel
Good point Boom
pre pandemic there were lots of groups who meet , including groups for carers.
I suppose it's impossible for others to understand. Every one of us is different, no two strokes are the same.
I get an impression that many SS exercise too much. I don't do enough, because I am spending my limited energy on maintaining my bungalow and garden, and dealing with the paperwork.
best wishes
colin
Dear Rozzer
How sad that you have had to leave your partner. Not sure how any of us stick with a partner. We are new people, changed from pre stroke, so the chances of staying t.ogether are slim.
One of the kind group of SS who helped me through the early years, is very happy with her partner, who she married after her stroke. Says it all really.
colin