About the Share your story category

Hi Everyone.

I had my stroke almost 8 weeks ago and compared to many on this forum I was lucky not to have impairment to my physical movements. I found the whole experience of the stroke terrifying but made a good recovery in hospital and can do all the physical things I used to do. What I have found very difficult is the loss of motivation as previously I could not sit still and was on the go all of the time. I just wanted the old me back again and became very tearful at losing this motivation and energy. The occupational help I received was great and the nurse explained that it would take time for my energy levels to return and that I should rest when my body told me to do so. This I have done and it took me six weeks or so before I could get through the day without an hours sleep to recover from just reading, watching TV or walking. I find walking and being out in the fresh air uplifting but even so from time to time this emotional flood overwhelms me and I just cry for no apparent reason. My wife has been brilliant in supporting me but I worry about the impact this is having on her emotionally also. I have a list of jobs I need to do and I just need a magic pill to give me the drive to attack those jobs in the way I did pre stroke. Nobody can tell me when this feeling will pass and that it will take time but in the meantime I just feel so down about the whole thing. Anyone who has had similar experiences and could share how they managed their way out of this situation would be very helpful. To everyone else I wish you all the very best in your recovery process.

1 Like

Hi @ColinH
Welcome to the forum although sorry you’ve had to cause the join.

It’s great to hear that you escaped much of the physical impairment that many of us battle.
There may be a small irony.
People are going to say to you “you look well”
Youve yet to learn perhaps what your reply will be “that’s because you can’t see what it’s like on the inside” or some more diplomatic (or more impatient!) phrase?

If you’ve escaped very lightly you may have a full recovery - I’m sure everybody here has their fingers crossed for you that that will be the case. More probably the motivational and emotional will be between permanent and fading over time. If they fade expected to take some months.

Also be aware that while stroke has a dramatic effect in the first few hours it keeps on the life-changing potentials ‘up it’s sleeve’ that come in at various stages - like for example the 4-month possibility of developing central stroke pain, the random aches, med side effects, replacement of recovery fatigue by fatigue for life and other things that we here can point out have been in some of our futures but not whether they will be in yours .

Much of what has been said by the community to previous new joiners is gathered together in the welcome post tap the blue text

Personally I agree with any concern about family & spouses. I think they bear the brunt and have much less support from the system so encourage your wife to seek and to take a support and listen to advice wherever she can find it

I dare say others will be alone to say welcome. I hope you find this forum something you can navigate because when you do it will be a valuable resource during the long road ahead

Caio Simon

1 Like

Hi @ColinH welcome to the forum, I’m sorry I missed your post but better late than never.

Your brain is still healing and repairing, it neither needs nor wants to be motivate to do much more so it just won’t let you, it’s as simple as that I’ve found.

Your brain is putting all its effort and reserves into recovery right now and it doesn’t care how many menial jobs you have on your to do list. They are of absolutely no importance to your brain as none of them are as life threatening as a stroke! So it’s just disconnected your motivational button for now and will not reconnect until it is sufficiently recovered enough to spin more than one or two mental plates in your head :wink: Normal service of said button will resume some time in the next 4mths or so :laughing:

That’s how I look at it now anyway, when I think back to those first 6mths post stroke :smile: And the crying is quite normal too, it’s a combination of shock and relief! You’ve been through a life threatening experience and you’re still here to tell the tale. It too will pass as you get further on in your recovery and get over the shock of it all. Just go with it, it’s part of the healing process :wink:

1 Like

LOL I’ve been confused by most things tech since my stroke !

2 Likes

i put my share story on here, but cant find it, did i do it the right way

2 Likes

Hi @tricia3 I had a look through the forum posts for you as I did read your story . . . and I’m still waiting for the part two of it :wink:
And it was actually in Share you story
(Whereas this post is the ‘About the Share your story category’…confusing I know :smile:)

Just click on the blue link below to get to it :slightly_smiling_face:

not very good with technology. do you feel cold today, its 11 on computer , i have to put heating on, still have pressure in head dont know why, is it the bp tabletslaying down, i have arthritus in l;eg

2 Likes

I still get that pressure from time to time from driving. I usual find taking my glasses of for a minute helps…not while I’m still driving of course :smile: Try it and see if helps relieve it.

Although, when I think of it, driving probably does raise my blood pressure a tad. Do you have a BP monitor, if so you should maybe start taking your a couple readings a day for week and take them to your doctor.

I’m off to strength & balance class this morning so that should warm me up :laughing: Its currently 9C here but I’m further north from you I think.

1 Like

we had an offer on bungalow but was too low she upped to252. its 14 here sunny and warm in somerset, i cant drive. i did yoga on saturday, first time for a while

2 Likes

A post was split to a new topic: Hello everyone, I’m Jonathan

Hello everyone, another Dave here, just joined, had a stroke on 20th oct just gone, i a locksmith trainer and was getting ready to go to big lock show when a had pins and needles down the right hand side, ignored them thinking that theyd go away but they didnt , about 3 hrs later a phoned my partner , she phoned a ambulance and after some tests they kept me in for 4 days. been home about 6 wks and things are coming along ok, very slowly , but ok, can walk , but most of time i drag my foot, can talk ok, and my right hand does what it wants most of the time lol. hardest thangs are the little things, like getting dressed, writing ur name, eating , want to get back to were i was pre strkoe, driving and training people again.

1 Like

Welcome @daveymitch to the best club in town that nobody ever applies to and takes everybody :slight_smile:

Your early in a journey that for most of us no matter how lightly we get away with it is still a long one. Rarely is stroke a detour on the path you were on but is teleportation to a new path not just for you but for all around you.

You should expect that there will be much improvement, but there will be some setbacks along the way - it isn’t generally a smooth path

Some of us put together a combination of the things we normally say to welcome new joiners in Welcome - what we wish we'd heard at the start - I recommend you have a read of that .

Very likely others will be alone to say hello and suggest some guidance sources very soon. you’ll find most of your questions have been asked and debated Previously If you master the magnifying glass above you’ll be able to find them but even if you can’t just ask :slight_smile:

Ciao
Simon

2 Likes

I’m not even sure I’m posting In the right place. Apologies if not.

Hi all, my names Kate. So on the 28th Dec my mum suffered a mini stroke. For 22 hours my world fell to pieces. I thought I’d lost my mum, my best friend. I’m beyond thank ful & lucky to say it was a mini one & 24 hours later she was released from hospital without any trace it had even happened with exception blood pressure that was still a little high. She was so lucky compared to a lot. The only thing she lost during the stroke was her speech which fully returned. She’s doing so well…. Me on the other hand, not so much. I spend every day with my mum, we live in the same house, I don’t really have too many friends or go out often so literally it’s me, my mum & our Dog, since she got out I’ve really struggled with constant fear of it happening again. I’m not sleeping cos I’m listening out to hear if she’s moving around or goes to the toilet. I’m checking on her first thing and feel like I can’t breathe until she says something. I’m refusing to leave her alone, I dash to get showered & all constantly in fear. I know I’m probably driving her crazy. She’s 73 & I’m 43 & she’s super independent so I know I’m driving her crazy. I just keep going back to seeing her not been able to speak with crazy high blood pressure in the ED & it scares the life out of me. I know I can’t go on like this. I feel burnt out now so I know I’ll end up ill but it’s constant fear. Does anyone else with family or somebody important to them who’s sadly suffered with a stroke feel anything similar?. Or am I just losing my mind?. I feel like I’m living with PTSD.

1 Like

You can rest assured just about everyone on this forum…both stroke survivors and carers…have been through that particular hell and come out the other side…some are still in it :people_hugging: :people_hugging:

Hi @Holliebear80 and welcome to the forum.
Now breath! Slow and deep, in through the nose and out through the mouth.
I myself suffered 2 TIA’s (which are mini-strokes) 3 years ago. And I’m pretty sure your mum is going through exactly the same thing as you are right now, so start talking…better out than in :wink:

Yes, she’s not out of the woods, there is always the risk of another stroke. That’s something all stroke survivors have to live with. But if we take care of ourselves, healthy diet, regular exercise and keep taking our medications, it all reduces that risk.

Is your mum on any medications yet? The standard ones are usually Ramipril for blood pressure, Atorvastatin for cholesterol and Clopidogrel for thinning the blood. Has she any follow-up appointments with the stroke team yet, there should be something or they will maybe phone in a few days.

You can find support and information from the Stroke Association Helpline on 03033033100. So it might be worth giving them a ring. They can also help you find local support groups for carers if you think that would be of help.

Also check out the Welcome post some us put together. It covers a lot of what can be expected going forward and some useful links.

One thing you can be thankful for, she came out of it pretty well from what you say. But her brain still has to heal; just because there’s no visible wound doesn’t mean there isn’t one…you just can’t see the wound in her head. She may be experiencing things like brain fog, she might get tired frequently or fatigued, headaches, balance might be slightly off. All these are also covered in the welcome post. And it might also help your mum to let her have a look through to see if there’s anything she recognises or can relate to

I’ve found my time on this forum has helped me to both rationalise and desensitise myself somewhat from those fears. I’m calm about it, don’t even get an odd pang of concern, but we’re all different, unique :blush:
As it’s a bit late in the day for some on here, I’m sure you will get more responses tomorrow.

1 Like

Hello @Holliebear80

Welcome :hugs:

@EmeraldEyes has said just about everything I would say - Perhaps with one or two slight omissions…

Yes you probably are suffering from exactly PTSD

You should seek some help.
You can try Headway or start with your GP.

The other thing to say is that even with a transient attack the stroke damage will take a while to clear up - hence the brain fog, fatigue etc that is likely to follow and will take a considerable amount of energy that you can’t see being spent - don’t worry if your mum is quiet and restful for some months.

Ciao
Simon

2 Likes

Hi all. Thank you for the replies. I really appreciate it. Sorry about the delay in thanking you. I’ve been dealing with a dose of Covid … as always it has great timing!. I felt guilty for posting on the forum as a member member, I realise no matter how I felt my mum and others who are in the same boat as the ones in the fight, I’m just a passenger. I have to say I did feel a lot better for posting though & I really appreciated the understanding and welcome I got. My mum is is on Blood Thinners, Statins & Blood pressure meds. She is booked in for a neck ultra sound next week … has anyone had one of these?. Apparently it’s to check for blockages. She’s also in for a 48 hour morntior fitting to track her heart is working ok. We’ve still not heard anything from the stroke nurse yet which is getting a bit frustrating as I’m wanting to know we are doing all the right things. We’ve changed her diet. No salt, all healthy fish and veg. I’m a little unsure on exercise if anyone can help me on that. Is it ok so get some?. She’s disabled to exercise as far as walking goes is limited but she can. I’m just unsure of her over doing it.

1 Like

Yes, I’d say many have it and it’s just the same as when pregnant mums have it on their baby bumps…only it’s on the neck instead, quick and painless. Youtube is great for showing that sort of thing if you care to take a look.

As far as exercise goes, she can do as much as she can or in other words, as much as her brain and body will allow her to. Do you have the number for the stroke nurse, it might be worth giving them a ring as your mum could probably do with home visits from OT and physio. Although they might be waiting for the results of all her tests as they are not all in yet. Failing that ring your doctor and get his advice.

I’d be loath to give any specific advice on exercise as I’m not a medical expert and your mums medical condition hasn’t been fully investigated yet. But she does need to stay as mobile and active as she can to prevent things like muscle wastage, fluid build up and such.

1 Like

Hi @Holliebear80
Once again Lorraine (@EmeraldEyes ) has covered most of the things & very well :slight_smile:

You might like to look at these: Video library | My Stroke Guide

Then in the drop-down box select Red Group.
If they proved to be too easy then return to the link and select Amber Group. You have to see how her fatigue levels are 2 days following her exercise before you know whether they were to demanding in terms of energy available

I’m glad you feel better by having posted :slight_smile:
I’d also suggest that you don’t view yourself as a passenger. You have a role as carer and that can be extremely demanding especially as it goes on and on. This is a place for survivors and carers. Together we are all #StrokeWarriors or #StrokeThrivers :slight_smile:

Most of us who have otherwise unexplained I ischaemic strokes get neck ultrasounds to check the cartiod arteries - are not too clogged. If they are then an operation to scrape them out is sometimes suggested depending on risk.

Salt can be a factor in high blood pressure.
it also makes things taste better for some people and taste is a component of being encouraged to eat - eating is important for healing energy - so lack of salt isn’t necessarily a good thing - being risk factors/ diet where is :slight_smile:

Caio

2 Likes

Good evening, all.

Just wanted to introduce myself.
I’ve been a long time reader of the forum, but thought I’d drop in & say hello at last.

33 year old gent, suffered a haemorrhagic stroke in March 2022, caused by an AVM. (Arteriovenous Malformation) which wiped out the whole of my left side. Began taking small steps in rehabilitation back in July 2022 and been trying to build from there every single day, I like to think I’m going from strength to strength in this emotional rollercoaster of stroke recovery.
Hoping I can contribute to this fantastic community :grinning:

2 Likes

Hi @DanH
A warm welcome to the best club in town with no queue to join :slight_smile:

I guess If you’ve been a long time reader that has without registering as a user? Great now you have :slight_smile:

& Nice to see you introduce yourself - We become aware of people when they post. Until then while there could easily be a mechanism there isn’t one to help us to welcome people :frowning:

Have you read the welcome post - Click the blue text - It says the standard stuff that we say to new joiners - please feel free to edit it if you see ways to improve it :slight_smile:

Yes it is a roller coaster especially for the emotions of all involved. I hope your daughter hasnt been to affected?.

If you’ve been making steady progress there will be a few here (quite possibly even majority) who are jealous :slight_smile: because most of us seem to take two steps forwards and one back or maybe that’s three vs two :slight_smile:

Yes this community does really get it in wats those who haven’t had a stroke, whatever their role - really don’t understand

Is that screenshotted bio from Instagram?

Once again welcome :slight_smile:

Onwards and upwards
Simon

2 Likes