The poem the stroke is exactly what happened to me,I remember it quite plainly as I slid down our bedroom wall at 3 o'clock in the afternoon on October 12, 2015, and crawling around the floor to get to the phone and dialling 999 and saying I think I'm having a stroke. One of the most frightening days of my life
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I used to get up at 04:30 and catch the 05:23 to commute to London and a heavily "thinky" job. I know that I couldn't even make the journey now, and can only marvel at what I used to do.
check out also 'Kubler Ross'...
good luck
For me the fatigue is strenuous because it's like being overtired but unable to sleep. Resting is good, however. I think if I did actually sleep, I would feel worse waking up as the grogginess in doing so muddles with my post-stroke symptoms. Exasperatedly so, with cerebellar stroke, I can feel knackered from about 5 pm until 9:30 pm, and then at midnight I perk up which often finds me in a sleepless void until 2 am. My body clock is all out of whack at the moment. I have tentatively started work again, but am fortunate I do it online and as a freelancer, I can adjust my schedule accordingly.
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it made me smile,I will pass it on.
Just a question about fatigue, I am 8 weeks after a stroke and while I have been affected on the left hand side the fatigue has been awful. What does everyone do About it when it happens, do you push through it and still do your exercises and walks etc, or is it best to rest.
Thanks Rich.
Rich , fatigue /REST & REST ! 1.5 years after for me . This am decided to move some pieces of timber into garage. 2 hours in very tired, stupiditly & from even knowing from past experiences, pushed on extra hour . My wife had to help me out of shower & to get dressed ! I hate having to ask for help . Completely my own fault, probably in bed couple of days now . How stupid, I never seem to learn ! So DO NOT try to push on .
Take it easier David .
At just eight weeks your brain still needs a lot more time to sort itself out.
if you get the classic fatigue coming at frequent intervals, then you might want to try resting as soon as the fatigue descends. I would not go to bed, just rest and meditate/relax. If that works then perhaps you could take the route of not fighting the fatigue, but letting it fade.
your brain can then get the re wiring done. It needs extra water to do this, and the brain has no feeling so it cant let you know it needs lots of water.
one major thing that i realized is that you need to get good nights sleep. It took me months to get good sleep. I tried sleeping with a light on, changing mattress, more blankets, less blankets, different room, five pillows, two pillows. I learnt i need 7.5 hrs sleep and by retiring at 10 .30 i get the best sleep. As mentioned above, once up the next day, i would not go back to bed during the day. To get off to sleep i use a tinnitus relaxer. It works for me.
yoga, relaxation, meditation have helped me a lot.
do keep a diary, just a few words each day. You might be pleasantly surprised how much improvement comes. It is slow slow slow and you wont notice any daily improvement, but it is there. You also will forget just what you are going through.
i too have left sided weakness. The infarct is on the right side of my brain, deep down. I have had rotten fatigue, which i call SF. But i got brilliant initial physical recovery.
things will improve.
be positive
smile a lot
you are not alone
colin
Thanks David, just learning right now but I get what you mean. It has been the biggest surprise to me. Had absolutely no idea about this fatigue.
Thanks Colin, I will remember to drink more water. I have no problem getting to sleep it's the waking early bit and lying there thinking that does me. Physically I think I'm doing ok, left arm and leg are definitely weaker. Absolutely no stamina at the moment, hope this comes with more exercise. I try not to get too stressed as this makes me more tired. As you say early days yet. One more question, I know what type of stroke I had but some people on here seem to have detailed knowledge of what part of the brain was affected. Didn't get told very much at follow up or perhaps I stopped listening after he told me I could drive again?
Hi Rich, when my husband had his consultation appointment, we were shown the image of the MRI scan so we could see the area of damage. Scary! We asked for a print out of the image, but the printer was on the blink ?, so we took a photo of the screen which was perfectly adequate, and enabled us to study it at home. So it's worth trying to obtain the image, so you can see for yourself what has happened inside the brain. We've used it to show friends and family in the hope of helping them understand the problems of a brain injury.
Stroke follow-up and monitoring is a really prickly subject. Many stroke survivors feel unsupported and unprepared for what to expect in their post-stroke lives. Having read lots of stories on this site, I'm not sure that even some of the medical professionals have much in-depth knowledge of the difficulties of living post-stroke.
Great news that you can drive again, take it easy at first, you may need to build up distance/time behind the wheel as driving requires a huge amount of concentration which will soon sap your brain's battery!
Very good luck, and don't forget to rest xx
Thank you for this reply Nic. As you say post stroke is very scary. The follow up was vague in the information I received so I might speak to my gp to see if I can get my medical reports. The driving was a huge relief for me and I get what you mean about zapping my brain energy. We took our dog to the beach about 40 minutes drive there and back and it wiped me out completely for the rest of the weekend. That was very upsetting, but at least I can drive and hopefully things will improve. As my physio keeps saying slowly slowly.
Dear Rich
there will have been a letter from the hospital to your GP.
if you have not been given that letter then the staff at your GP surgery can send you a copy. No need for a GP appointment, the staff can do this.
the letter describes what the hospital discovered.
mine is ischemic stroke with infarct in the right lacunar.
then it mentions left sided weakness and svd.
do keep the letter, it is helpful at a later date.
lacunar just means deep inside the brain.
infarct is the dead bit of brain, shows up white on the scans.
The stroke got me in December 2016. Since that date there is a lot of progress. As Nicabella rightly says, even doctors are lacking in stroke knowledge. I was so lucky to be in Colchester hospital, which had a very good stroke unit, and huge rehab facilities. I had five physios working on me. In many other areas the hospitals were not nearly as well prepared as Colchester.
it is too easy to get involved with the story of the day you stroked and what might have caused the stroke. What we need to try to do is accept that stroking has finished, we have survived the vulnerable first month, now have medicattion to avoid a second stroke and now we need to repair the damage.
my left leg doesnt really work fully, but the stroke did not damage the limbs, just the messaging system.
if you havent got them, get hold of the stroke association leaflets. They are really good.
keep smiling, be positive, you are not alone
colin
Hi Rich - the first time my husband drove post-stroke, he drove to a roundabout about 5 miles away, went all the way around and straight back home!!
Over the last 3 years, he has driven increasingly long distances, and can drive for about 2 - 2 and a half hours. We have been used to driving to Italy every summer, since 1992, it used to take about a day and a half. We haven't done that since 2016, but we're hoping to start doing the journey again once the Covid situation is under control. So don't worry that you might struggle at first, keep doing short journeys, and rebuild your skills and concentration - I'm sure you will achieve your target!
Good luck
Thanks Colin, great information.
Rich
Thank you so much Nic, I love these positive answers. Some days I am so tried and get really down and this gives me a lift. I will get stronger I truly believe that so I plan to take my dog out to our local woods when I get my head into gear ?
Thanks once again.
Hi Rich I'm 4 months post ischemic stroke went back to work after 11 weeks now suddenly going through a bad phase of fatigue. Rest is best and plenty of water, thankfully my partner is very understanding when I need to do nothing as physically I have nothing wrong me. Just feel rubbish as I was starting to think I was coming out the other side. Spoke to my contact at Stroke ass and they confirm still early days just take it easy.
Thanks Tulip, I really want to do stuff but some days the fatigue is awful so just cant. Some days I think I am ready to go to work and others no chance. I don't want to go back and then go off again. Thankfully my work are not putting me under any pressure and have been really good.
Thanks
Rich,
I'm 4 years on and it hasn't improved, though I have learned (a bit) to live with it.
Firstly, good sleep is vital. I recommend you read 'Why we sleep' by Matthew Walker.
Secondly, I find that I have only so much energy per day (I can't recharge with a midday nap, although sometimes I need to take one anyway), so need to plan important activities for the mornings (and leave the gibberish speaking and dyspraxia for evenings. Unfortunately that doesn't fit well with other commitments)
Thirdly it's curious what "runs my battery down". It's a bit like a cordless drill, where high torque can drain it quickly. Stress comes high on the list, followed by social interaction (especially with strangers), hard physical work/walking and complex "thinky" things. Even sorting screws and stuff in my garage for an hour or so can drain me.
Finally, you need to learn to swallow your pride and accept help from others.
Good luck.
Bill
Hi everyone,
I had a stroke at 45, 5 1/2 years ago. To say it traumatised me would be an understatement. I see stroke as causing a bereavement of self.
Really struggle to let go of aspirations of the old me- what I used to be able to do, my plans for the future (especially with hubby & kids). I still have melt downs where I just curl up into a foetal ball and sob until I can't cry any more...
Chronic fatigue now exacerbated by back/leg and arm/shoulder pain - trying to do home physio following physio recommendations and on mega pain killers until outpatient treatment re - starts.
Short term memory is dire (I just had to scroll back as I couldn't be sure what I'd already written!).
External stimuli, especially noise and bright lights are intolerable.
How does anyone deal with these emotional and physical pains?
Hi I'm just on the eve of the 5th anniversary and can relate to much of what you say
I was a very active 57 year old. The grief of 'lost futures' is something not well recognised in my experience, and the grief of lost roles is similarly difficult for people to understand. I don't have any gems of wisdom, other than to see it as grief. It took me a lot of time to even get to that understanding, and I can't say I am 'over it' do you even get over a traumatic loss like the loss of a life not yet lived? I don't know. What I am having to come to terms with is the probability of being long term disabled. This is just hard every day. It is a different kind of life and I don't yet understand it. Nor do I like it much, as it doesn't match what I had hoped for. In terms of pain and fatigue. Even after 5 years the fatigue still comes and really gets me down. I think less about 'recovery' than adapting these days although I have not given up on improving things like walking. I still keep a hope alive that one day I will get some activity in my left hand which has been a passenger for the last 5 years. This is a major distress for me. For fatigue all I can find I can do is to pace things as far as possible. It does not reduce the distress it causes me but gets me through some of the more difficult times. I'm fortunate now that I don't have much pain. I had a serious shoulder pain early on, in the first and second years. This was solved by months of focused physio exercises that strengthened the very weak shoulder muscles. In recent times I had a serious back pain, so bad I could barely stand, I had to get my son to help me up out of a chair, which was humiliating. A combination of strong painkillers, and rest got me through. I have since identified an unhelpful twisting movement I tend to make because of my left sided weakness and I am finding ways to correct it. Have been pain free for some months now.
I wish you all the best in what is a very difficult time. Your story is very relatable, thanks for sharing.
Best wishes
Tony