Struggling with post stroke me

About stroke Physical effects
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Hi everyone. So I had a stroke in February, I was in hospital for a week and rehab for 5 weeks before I was discharged and have been continuing physio etc at home. There’s a couple of things that I just can’t seem to get used to and I was hoping anyone with similar post stroke symptoms could tell me if they had or still have any issues with the following things, or had any ideas if they are normal after a stroke.
Before my stroke I was often up multiple times on the night to go to the loo, Mainly I think because I’m diabetic. Since my stroke when I’m asleep I don’t wake up like I used to and because of this I have been buying incontinence slips (the nappy type ones) and wearing those every night. It was getting better while I was in rehab but I seem to be regressing now I’m home and I’m waking up with them pretty much at capacity! Im just wondering if this gets easier over time? I’m 37 years old and I’m worried I’ll be buying these slips for the rest of my life!

Also with all the lovely weather we’ve been having lately I’ve noticed my tolerance for heat and the sun has dropped dramatically! I used to be able to sit outside and read/watch random YouTube videos etc for hours, but can barely make it to an hour at the moment without feeling ill.

Lastly, I know fatigue is a big issue with many people and I’m getting used to dealing with it, but I’m struggling between being fatigued but not being able to sleep… I’m usually wide awake around 4am even if I can’t sleep the night before. I think all in all I’m getting between 3&4 hours a night and it’s driving me mad!

Thanks for reading and I would appreciate any advice

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@LouCookson and @jane.cobley i love the sun, I try to get out in whenever I can as I suffer with low vitamin D. in terms of sleep i have been using an app called balance. It is free for a year I do meditation on it, plus use the sleep section at night. he talks me to sleep. hope that helps

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Hi @LouCookson
I’m type2 diabetic and still have to get up in the night, but I know that’s more from the amount of tea I drink than anything else. I do however, suffer from bladder retention. So after the stroke, when I’d eventually get off to asleep, I’d stay asleep, but would wake up with a painfully full bladder that would take two trips to empty. I’m 2½ post stroke and don’t tend to have that trouble anymore, I think it stopped sometime in the first year.

The only trick is to not have anything to drink for at least 2 hours before going to bed. Take any night time medications after your last drink and then nothing more until morning.

It does get better in time, the first 6mths is the most rapid period of recovery, then it slows somewhat.

Night time sleeping is disruptive anyway, particularly if you are napping in the daytime as well. As is to be expected, considering you are still going through an awful lot of healing and your brain has so much to do to function as best it can. You are basically on a baby’s sleeping pattern and there’s no point in fighting it as that may only slow down/hinder recovery.

Tolerance for anything was all over the place in those first 6mths, reading, watching tv, physio exercises, any house work, anything and everything I could only cope with in short bursts, 15-20mins tops, gardening was completely out for obvious reasons. The brain could only take in so much so I would cycle through 2 or 3 activities at a time then I’d sit for 15mins shuteye and start around again.

Eventually over the first 6mths to a year, all these disruptions should settle down into more normal patterns. You’re currently in baby mode, your brain is being reborn in part - rerouting, repairing, mending, re-learning and remembering…or trying to…and it’s all very exhausting work for it and maintain some semblance of functionality. Give it a break, don’t try to run before you can walk, be kind and patient with it, it’s doing the very best it can do. Really it’s amazing and fascinating what it does do in order to get itself back online :smile:

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Stroke - the gift that keeps on giving! I am nearly 2 years post stroke and things are still (very slowly in that annoying stroke type 2 steps forward 1 step back sort of way) getting better. Today I even had two cups of tea at a coffee morning and was able to visit the library to change my book before making for the loo so I was quite pleased with that. On the other hand I did try to get money out of the ATM using my bus pass so maybe I’m not so clever.
All the things you have described are fairly typical. It’s particulary annoying that I am less likely to sleep at night if I’ve had a busy day and yes, having complained all winter about the cold I’m now too hot. My internal temperature control seems to have gone very wonky. All I can say is that very very gradually things seem to be getting a bit better.

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@LouCookson sorry to hear of your struggles. I echo what others have said re it all being pretty common post stroke. Things should get better in time. Have you tried some pelvic floor exercises for the incontinence? They’re definitely worth a try. You could also speak to your GP. I take medication to help mine but was on it pre stroke.

My temperature control is all over the place. Last week i had the heating on i was so cold. This week i’m struggling with heat. Never happy us humans :grin::grin:

There’s plenty of reasons to be hopeful of improvements but if symptoms are troubling you please speak to your GP / Stroke team.

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Thank you all for your advice and guidance!

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I’ll give that a go tonight!

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:joy: indeed! I wouldn’t even talk to my other half about stuff like this pre stroke… now he probably thinks I tell him too much

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I just had a televisist call with my doctor and she had asked me have i ever had Seziures before I said no i have been really shaking since April

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If the bus pass works at the ATM, let me know. I will purchase one to use as well! :money_mouth_face:

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I hope you are getting answers and help.

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I have had issues with incontinence, much relieved I finally received some help for it. I got to see a urologist who specialized in neurological issues. The thought was the issue was related to my brain not telling my kidneys and bladder what to do. She gave me exercises to do. 1. go to the bathroom every two hours, then do nothing but focus on using it. 2. after finishing, don’t get up, but repeat 1. The idea is to retrain your brain, and your muscles to work together. It took me about two weeks of that but now I have no problem. PS, do not get up from sleep to go every 2 hours unless you really need to.

As far as sleep, I am all over the place! No telling if I will be up 24 hours or sleep 15 in a day. The harder I try to keep a schedule, the worse it gets. I think some may be anxiety for me, as I am afraid I won’t get up for an appointment and can’t sleep the night before, or that I will forget something important. I definitely had anxiety while hospitalized thinking I needed to stay awake or I may never wake up again and miss the opportunity to spend time with whoever was my visitor that day, or that I would not relearn the stuff I needed to if I did not constantly work on it.

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My urologist told me that after stroke those problems are quite common, but that it is not well known even in the healthcare field, where nurses , P.A.s and Aide’s were not very kind when accidents happened, even if one had to wait a few hours for a bedpan. I hope no one else experienced that, but as a former aide, I worked with people who got very upset as well.

I also have the issue you are speaking of. The proported ‘cure’ for that is everyday dose of Miralax. I don’t do that, although have it on hand for just in case necessity mandates it. I use the same idea with this issue…sit, at least once a day, as long as it takes. Relax, take a book along, or in my case a magazine as I can distinguish pictures and colors much better than words in a line, even if not as clearly as I would like. It also seems to be working, however, I must admit to a proper cleansing for colonoscopy in mid May that probably helped that along to begin with. I also have diverticulosis (newly diagnosed) and had 19 polyps removed that may also have helped a bit. Thankfully only precancerous cells, but new fun with annual colonoscopies. At least the cocktail they use to sedate gives a pleasant feeling…one of those times not knowing what is going on is a lovely experience.

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hi lou,

with sleep I suggest regularity.
if you can tighten up with times, and stick to them that will help
just go for small improvements… and stick to strict bedtime
& your body will thank you one day

good luck, Roland

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My old doctor haven’t seen in long time asked me how got be in power wheel chair

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Hi louCookson, sorry to here about your stroke.
Reading the comments I think we all struggle in different ways.
Personally I find that if I have my last drink 3 hours before sleep I can get through the night okay. That leads on to one of your other points, fatigue is the norm these days. I have always been an early riser and 4am is normal, that said I am washed out by 8pm every day. I also have to nap during the day and there is no build up to feeling tired, I can be fine and then 10 minutes later feel so tired I simply cannot function and have to nap.
As for the heat I too used to love it pre stroke, now I really struggle and always look for the shade.
My stroke was nearly 5 years ago now and I was 53 at the time. All I can say is that you adjust and it does get better but things will always be different.
Best wishes in your recovery.

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Hello Lou. I had my stroke in March 2022 and spent 5 weeks in hospital before my discharge. Prior to my stroke I used to have “Urge problems” where i sometime could not get to the loo in time, I was also a type 2 diabetic and used to get up 3-4 times a night to go to the loo. since my stroke I have had to purchase incontinence slips as my stroke has not helped me get to the loo faster. While I was in hospital I was lucky to get 2 hours sleep each night. Now I get 6-7 hours on a regular basis. I was never a sun lover so still spend my time in the shade when I am outside and can easily nap. being retired (69) I can nap whenever I want to and I feel that sleeping whenever I want to helps but I still suffer with fatigue. I know things are slowly improving but it is so slow it is causing me to have depression.

These comments don’t offer any advice but they confirm you are not alone. keep posting questions and reading the stories of other people in recovery they may help.

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Hi i too used to be a sun worshiper but a case of vitiligo cured me of that, I’m in Cyprus at the moment and suffering in the sun 33degrees in the shade
My kindle stopped working it was to hot. Needed to get in the pool. Two things i found , i couldn’t use most of my right side and i have forgotten how to swim luckily the pool was not deep and my wife held me up until i managed to get my legs under control. I became a little bit depressed but daughter and family took me to task and now im much better. I use a walker but only for a short way and then i need to sit on the walker, it is now 18 months since my stroke.
Only one advice i can give don’t give up, your friends or family will help and prop you up if you give them a chance.we brits are supposed to keep calm and get on with it.

And so must I love and love you. It’s, time for the music quiz my daughter and her daughter won two nights running. Not me i can’t keep up with bingo at the moment and I only have buy the tickets

Allan

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