Recovery and things I got wrong! (& right)!

[Baldrick]

I found little practical guidance following hospital so I offer this as my experience - my key points to date. The stroke association local coordinator was a great help & encougement but there’s more than just me in Wales(!) so I found you have to make it up as you go. This community has been the only constant source of information and support (thanks everyone). My strokes were mild in comparison to many & as is said so many times everyone’s experience is unique to them but i hope the following may be of interest or give some ideas to anyone reading who may be new to this. I hope it might help a bit….

Well, here it is….

Things I got wrong!

I WORRIED too much. I don’t have an answer for this; anxiety i think is natural in the circumstances. I was at first very afraid of going to sleep , being in the bedroom, nights and also going out. In case of another. This passed after a few weeks ( or lessened greatly) but then I had a second stroke though very mild thankfully & this saw the return of the worry and it was worse this time, took longer to ease and on reflection what a waste of valuable life. That said it is maybe part of a process of acceptance and moving forward. I have no wisdom on it but can say it does pass.

FITBIT! I became obsessed with health monitoring (BP & heart rate) specially after the second stroke and became extremely anxious. Fitbit made matters worse. 2 doctors told me to bin it and when I did things dramatically improved literally overnight. I stopped worrying amd stressing. If you use a monitor evaluate its use & if necessary bin it!

I spent a lot of time MISERABLE - why me? The discussion has been had elsewhere on the community so won’t repeat it. Just think it’s a form of grieving for what was before .

At times I was quite GRUMPY and not very tolerant. I suppose thats being human given events but not something im proud of or happy about.

I was impatient to see improvement - accept it takes time. Be gentle and kind to yourself.

Early on I realised I was ISOLATING myself I found comfort at home with the familiar but I was in danger of a hermit like existence i had to break out……so…..

GOING OUT was scary at first. Family were great taking me to the cinema but then I realised I was becoming dependent on them so I forced myself to do trips on my own go walking etc. I felt it important to regain some independence. This process is ongoing.

And things I got right!

EXERCISE - do as much as you can of whatever you can I think. There seems to be no guidance about how much and what is too much or not enough. The word seems to be you can’t do too much but surely overdoing things could prompt another stroke? I don’t KNOW this so any wisdom please say folks. After the second stroke I moderated my exercise but aim to step it up come spring.

-TALK to family - what a massive support they have been even the kids incredible for their age; I can’t speak too highly of them. A massive encouragement for me. Does anyone understand? - well no not totally I don’t think if I’m honest but I am probably wrong. Regardless they are my constant rock and support.

ENJOY life - don’t live in fear. This took me time to achieve I found it easier said than done. Time also to wake up and realise the worst had not happened and take this as normal. Of course I know there’s a risk but also I know it may not happen and I choose to concentrate on this and not dwell on the former.

DIET.- I changed my diet initially to Mediterranean I eat far more fresh veg fruit and have a salad at midday. I eat more veggie food some quorn is very tasty. I discovered new food thanks to friends on here but as I live on my own discovered new quick foods to enjoy such as veggie burgers and am more aware of content such as salt and fats, again many in this community have helped me do this. This was the major change (as meds were largely unchanged) and to date it seems to have made a significant difference .

Reading that it seems I got a lot right in the end, but allowed negativity to dominate early on. I’ve accepted the stroke(s) now and that I’m different to before and extremely grateful that I am slowly able to do some of the things I used to - just not as much nor as fast or as far. God willing things will keep improving though - give it time!

If I think of anything else which may be useful I’ll add it. It’s great we all share & i hope a bit of this helps someone - & perhaps someone new to stroke.

[Gnasher]

What you say is so true. And I like you came out of this stroke with little if any disabilities. I lost my speech for a little while on the day of the stroke. And I am so grateful that it wasn’t worse. But it’s taken time to get my head around why me. Will it happen again. The anxiety and loss of confidence the tiredness that overwhelmes you at times. Taking myself out into the world again on my own. Scary.

I can’t imagine how it is for those who are less fortunate than me. My heart goes out to you all and those who care for you.

A stroke can destroy ( is that the right wording), many lives. But through this site and the friendship within it we can all help each other by talking and letting out our feelings and encouraging each other.

This site has certainly helped me and thank you everybody survivors and carers for that.

[Rups]

@Baldrick

EXERCISE - do as much as you can of whatever you can I think. There seems to be no guidance about how much and what is too much or not enough. The word seems to be you can’t do too much but surely overdoing things could prompt another stroke?

Unlikely that exercise could prompt another stroke, however, the type of stroke I had can be caused by exercise; take the journalist Andrew Marr for example who had a cerebellar stroke while working out on a rowing machine. Cerebellar stroke is rare though.

Rather than exercise, I like to label it all as movement. Movement in the right way is beneficial, inertia (unless for rest, relaxation and meditation) is, generally, not if prolonged over a continuous, uninterrupted period of time. However, there might be some who consider long periods of inertia while consumed in research or study to be beneficial and may only move to stretch their legs. Whether this lifestyle affects their health, who knows, and if it does, perhaps they prioritise the knowledge they seek over corporeal wellbeing.

I don’t know how much exercise per se can be attributed to a person’s general contentment and wellbeing. I have been surrounded by plenty of people who are of a ripe and healthy age who don’t exercise as such, but they do keep active by moving and thinking. I also know some who are not, particularly, fit or healthy, but are happy and content with themselves and their lives.

I, personally, don’t enjoy isolated exercise. I prefer to keep moving by doing housework, gardening, walking, dancing, and using my limbs expressively. That’s just me.

I enjoyed reading your list of personal realisations.

[Baldrick]

Thanks Rups
Really good thoughts. And you are right - movement is a better term i don’t believe it has to be a workout (thank goodness) i for one do not belong to a gym tho health clubs etc work for some but thats not me. Gardening DIY etc is also good. You make a good point that the important thing is contentment and feeling good; movement is an option which may contribute to that maybe.
Very interesting insight you have about type of stroke too - reassuring thanks. Ive often puzzled about this but your observation gives me a lead to a bit more reading up - and other readers too I should think.
Thanks again Rups.

[Mrs5K]

@Baldrick a great post & I think a lot of us will recognise some if not all of what you say.

Hindsight is a wonderful thing but hopefully by sharing your wrongs / rights others starting out may be able to use some of it to aid their recovery.

I guess i had to get over some of my anxieties early on as hubby, being self employed, had to return to work. This forced me to do some things I perhaps wouldn’t have otherwise. Getting out on your oen that first time is scary but is worth it as it is the start of getting some independence back. I still need a lot of help with some things but am a long way from where I was.

Best wishes

Ann

[Jbob]

@Baldrick with you and @Gnasher in so many ways. I was fit and active although in my 50’s and still fit competing with kids in martial arts the word shock didn’t cover this. Confusion, fear and anxiety suddenly consume you, after testing me daily and driving myself on as brought up not to quit - not a great idea as I didn’t do any pacing then crashed. Have learned and now getting better just got to the gym and a slow pace to start, spoke with my teacher at martial arts as I have some minor left hand issues- come back and enjoy it.

I also found better advice in here than almost anywhere else, learning to be happier and working on health/ fitness again but taking my time which maybe the key.

[Baldrick]

We were talking with Bobbi Mich and Carol at the weekend about the impact on mental health and that little consideration is given to this. The blow to confidence is colossal and the fear of what may happen. I think all of us who have had strokes are very good at sharing experiences if friends on here are anything to go by. And yep we all help each other by doing that.
You are right getting as much of that independence back as u can is a big but essential step i think people know when they are ready for that. But it’s still a challenge.
Thanks Ann.

[Rups]

Very little is considered, mental wellbeing wise after stroke. Most is centred toward physical attainment, which if one has a sound mind is a different ballgame to when stroke damages psychological processes. Physically, my vision and spatial awareness has been the primary block, but my mental wellbeing has and still does require constant treatment. I was diagnosed with BPD after stroke, a combination of my personality and the brain being damaged created the perfect storm.

[Bubblicious]

Hi Baldick, interested to know how second stroke was spotted when you it was mild. I get regression, I am not a worrier but always there, even after CT and MRI gives all clear. My symptoms or decompensation seem different

Regards Gary

[Baldrick]

Morning Gary,
The second stroke was a little face numbness (other side to original) and a limp but the main symptom was confusion. It was obvious to me it was a stroke. The A&E nurse was adamant it wasnt so I was ejected into the A&E waiting room fo 9 hours. Long story short admitted to ward by Dr, consultant agreed it was a stroke tho nothing on CT i was offered option of MRI which I grabbed and that did show 2 small (tiny) areas . The symptoms went within approximately 24 hours so I think it could be classed as a TIA in most respects??
But to answer your question, I think you just know when it’s a stroke. It’s unmistakable even if physically very mild. You do know your own body best. I can distinguish this from the worries and sensations post stroke which I always thought I was alone with until reading others comments on this forum! And it was the other side which distinguished it further in my case.
The worry you speak of is normal can I ask how recent your TIA was and symptoms? Yes the worry is always there - but in the back of my mind now. Every person on this planet could have a stroke at any second and we are no different in that respect. We are different though in as much as We have had the very traumatic experience of stroke and it’s natural to fear - that is a protection mechanism. But I think we can value every day families and relationships more and focus on this push the negative stuff away - which brings me to Rups post which I will answer later ( got guest staying)
Hope I havent rambled too much and that makes sense? Have a great day Gary - Cheers.

[Baldrick]

Rups thanks - spot on as usual! I can only speak from personal experience - I became aware I could easily give up - effectively Become a hermit.
I chose to battle and am making progress- good progress but it is an ongoing thing. I get negative sometimes but less frequently now ive convinced myself thats a waste of life .
I have had more inside help from you and others on this forum than anywhere (I can’t say thank you enough) .
It’s such an important aspect - one which is not adequately addressed by the NHS - as u say it’s just the physical symptoms and an assumption that if that is done - u r ok!!! Yes it HELPS when recovery is going well but recovery is not a linear process and we all have different starting points too. But that ie definitely not all……
So ive had a rant but no furthe forward. Other than to say this is a massive area which needs exploration. Ive read CBT helps but not accessed any myself. Im sorry to hear about your PBD my big change is have identified a tendency to catastrophise (and isnt stroke it’s natural companion?) but having found out I can now combat that.
I can well understand how others have PTSD (or similar) from their experience. An given the possible damage to thought processes the emergence of any number of conditions is certainly a possibility which I would have thought the medical profession would explore.
Massive area Rups - let’s all keep talking about it and helping each other? It seems if we don’t nothing will change.
Cheers Mate​:beer_mug:

[DeAnn]

I was just going to ask a question of @Rups, i just saw your reply to his same post. I have not heard anyone.Say something like that before. And it made me wonder, because I am now four and a half years out from my strokes. I have had some personality changes with that. At first I thought they were emotional changes. Impatience, apathy, talking too much, interrupting people, trying to do anything that requires attention to detail is nearly impossible.

After all this time, though, I am finding a little help from adhd guides to doing things.

This is very odd because in the past, I have always identified very close to autistic. And I do have a lot of those traits still, some much more marked, such as being so bothered by noise and light and movement and pattern… a preference for being alone, preference for writing over speaking…

I first noticed I was having trouble with executive functions

I took free training online for how to be organized. I can’t remember the name right now, but it’s still on my computer. It did help some and reminded me of how I learned to be so organized in the past. I will try to put it on here later, in the hope it will be helpful to someone else.

I find I am now distracted very easily. Where before I was always extremely detail oriented. I was also a perfectionist before, and I am not now. Not at all. And that’s probably a good thing. I could care a little more than I do.But i’m not going to stress over it.

Anyway, I seem to have quite a bit in common with adhd. If i had tested for that before stroke. I wouldn’t have come up with matching answers to any of the questions. Now a quarter to a third of the questions, apply to me.

As far as the talking too much and interrupting people, there what’s a specific terminology for that which I don’t remember but speech therapist named it when I mentioned it, and also let me know. She and her a student had already noticed it and discussed it, but hadn’t brought it up yet.Because we were working on other things at the time. What’s the time I don’t do that anymore but it took a lot of reminders to myself and occasionally from other people.

It seemed curious to me that both of you had some similar experience of changes, even if in a different way.

[Rups]

Well, it is interesting. For myself, having double-sided cerebellum damage, I found it interesting to discover that the cerebellum plays significant key roles in the “abnormalities” of ADHD, BPD, Autism, Schizophrenia, and Down Syndrome. I probably had BPD traits before stroke but the brain damage elevated the markers for the disorder and made it diagnosable. So, stroke can either mimic a disorder so that it could be considered acquired or onset an existing disorder or syndrome that was functional and not dysfunctional before brain damage got in the way and had a messy head party.

[IreneFC]

@Baldrick Wow, some of that was like reading about myself. This is of great help to any new stroke survivors. I have a step counter and for me that works wonderfully as I did not get it relating to stroke recovery it was for my osteoarthritis in my knees. That’s why like we have four fingers and a thumb we are all different. I still have a long way to go and do not know if I will return to my former self, but I am gonna give it a go good. I was angry for a long time. My wife does not understand and says why you speaking to me like that. I say like what I am being direct. Thing is before my stroke I was a nicely nicely and now I am the real me. My wife or anybody apart from stroke survivors understand about the anger. Have an amazing day. Maybe one day we will share a coffee together

[Dexster]

when I was on the stroke rehab ward, there were two patients who had lovely caring spouses who visited daily and took lots of trouble to help them, and were subjected to vicious nasty temper outbursts from their other halves. I felt so sad for them - they were doing their best and more than most, and just being blasted for their kindness. So I say, blow being your real self, be kind to those around you who are doing their best under really difficult circumstances- just as difficult as yours/ours..

[Baldrick]

Coffee sounds a great idea im up for that! Do say if you come to North Wales !
Yep anger is part of the readjustment and not a reflection about how u feel about your nearest amd dearest I’d say. It’s a massive adjustment they will understand that . Personally I like directness - just as well with my niece! - she takes no prisoners and everyone knows where thy stand! It can be hurtful initially , but a great open conversation usually results everything in the open and we all grow from it. And tbh sometimes ive been a prat! Look forward to meeting you if it ever works!
Have a great afternoon!

[tony_cave]

Reading your story is like reading my own experience,so many similarities especially of mood,isolation and being able to move forward with life accepting that the new you is different.
Your post will give hope to others.

[IreneFC]

@Dexster try being a stroke survivor for a day and you will understand more. I am not rude to my wife or anyone else, I am just direct. When stroke survivors get angry if someone is helping them its because they re frustrated they cannot do it themselves. I have no idea if you are a stroke survivor or a carer, But the world of stroke ids complex. Have a great day