Please don't say 'It just takes time'

When will 'stroke' not be the first thing, the all consuming thing that's in my head all day, everyday? The worry of what if, if another happens & is worse. Stroke has stolen my identity.

My name is Fiona, I'm 56 & really don't know who I am any more. The week before Christmas I had a small stroke (they think due to irregular heart beat, tests not all back yet). Physically I have a tilt to the left, use a stick out with the house, my balance is improving. However I'm frustrated, bored but can't settle to do anything. My concentration is rubbish, memory not great. I have 'sensory overload' can't cope with lights, looking up & down, headphones a no-go. I worry if I'll ever get back to work. Open plan office, noise, lights, computer work & dealing with hundreds of things at once when at the moment I can't do more than one thing at a time (& then I forget what I'm doing or don't complete properly).

I'm overwhelmed by everything. I used to thrive on debates & discussions. Now I can't cope with conversations, can't even watch the news. That's not me, it's too much to deal with, stroke has stolen me.

I know I should be thankful that my stroke wasn't big & really I am. But I am resentful that this has happened & I don't know how to get past this. If I'm not me anymore then who am I, what can I do?

I'm told it 'just takes time', 'you look well', but I know I'm not right & I bite my tongue  not to get angry.

Sorry this is a long post. Advice on how to get past this stage will be gratefully received.

 

Dear Fiona

You write a clear and consise posting and you are so spot on about the various issues. A small stroke is a bit of a misleading term. You had a stroke. Your brain is damaged and no one is likely to tell you how many cells have been wiped out. Some cells might be repairing right now, but many cells are dead and they dont regrow.

Yes you might have another stroke. However the first month is the vulnerable time for another stroke and you have passed that. No doubt you are medicated to avoid high BP and to thin the blood. If you toe the line of sensible diet, some exercise and zero smoking then you are far less likely to have a second stroke than most of your peer group who havent (yet) had a stroke.

Many of us had an irrational fear of a second stroke. I think that is just raw instinct, your brain did not appreciate the stroke and so its now telling you not have another one. Instinctive fear.

Yes you look well on the outside. But no one can see inside your brain, where you are not looking the least bit well.

Recovery is agonizingly slow and we are stuck with that fact.

The stroke has done its evil best and you now emerge with disability. We have to learn to live with our new, often rubbish, self.

Old Fiona has gone. She isnt coming back. New Fiona is popping her head up and may in some ways be better than the old Fiona. You will not be the same.

To help your amazing brain rewire itself (neuroplasticity) you need lots of rest and lots of sleep. You also might wish to provide your brain with lots of hydration. You are no doubt a bubbling cauldren inside your head so water is needed.

I used counselling and relaxation classes and they help me a lot. I also have a "tinnitus relaxer" which is just a machine that plays soothing sounds on white noise. That was a good investment of £30.

It is too early to return to work. Generally I observe that 9 months is the earliest of returns and then it needs to be stepped. Admittedly no two strokes are the same, so maybe you will be the exception and be fit sooner than that.

I couldnt possibly do my old job. I am not that person any more.I think stroke aged me about 7 years on day one. So I am retired. I do a tiny admin job (voluntary) and it slayed me at first. Now I can cope with it. I also make tea and coffee at local meetings, wait on tables and tidy away. That was alo at the extreme of my ability, but it slowly got easier. Now I can remember ten orders of tea and coffee. I struggled with two to start with.

Regret to suggest that you are likely to get every illness imagineable to add to loss of memory, hearing issues, being overwelmed and so on. These things do improve. I write a stroke diary. I can look back and see that things have improved. I cant see the oimprovements day by day. My recent delight is tha my memory is getting quite good. I have advanced from Tipping Point to The Chase and can get lots correct answers. Whats impoertant is that I can now converse with a bit of conviction.

Well its time I shut up. There is so much to learn and I havent got any training to teach you. Just exchange experiences.

I did admire your post. You will be a great and welcome asset if you visit this forum regularly.

You are not alone

Best wishes

Colin

 

Hello Fiona, I know how you are feeling and it’s horrible and frustrating. I had a stroke 1 year ago this month and it turned my life upside down but things do get better I promise you it just takes time - I know you don’t like hearing that but it’s true.

I remember being all over the place just like you and things I did without thinking became a chore and some days seemed impossible, it was so frustrating and added to the confusion. However things have mostly settled although I still get  some things confused or forget what day it is, silly things which my short term memory doesn’t store.

I was an avid murder mystery reader but have not read a novel since the stroke. I’ve started to read short stories which can be just as good. You just have to change things and you will work out what is best for you. I also used to read the newspaper every day before the stroke and that has gradually come back, but for months and months I didn’t have any interest in reading anything, I was also the same with TV, think it was because I found it so hard to concentrate. I’ve only recently started listening to my music again which is great.

I worked in the NHS as a cardiac technician before I took early retirement a few years ago and I know I couldn’t do that job safely again - just from a memory point of view. However there are lots on here who have successfully returned to work with a few changes being made to enable them to continue to work.

I hope you can see things do get better and you will make a good recovery. Stay positive but mostly give yourself time to recover, I know it’s really hard but it’s what you have to do. A year ago I was just like you, now I’m more at ease with what has happened, oh I still have setbacks and memory glitches but the stroke effected my memory so it’s to be expected. 

Read others posts on here, they will help you to see how well you can recover.

Ann

 

 

There is nothing I can add to Colin’s post as he has hit the nail on the head. I would encourage you to listen to your body and rest when you need to. Drink plenty of water and exercise when you can. 

There is a lot of history on the Forum telling people’s stories and showing that progress can be made. Take care and keep posting to let us know how you’re doing.

Veronica and John

 

Fiona, welcome to the forum. All strokes are individual and affect us in many different ways, mental as well as physical. Emotions go awol and in the early days after stroke conversations are hard to follow and thought processes are tiring. My stroke was three years ago and now, aged 75, I am still in recovery. This week is the first time I have started to read seriously again and this is a great joy to me. I exercise a lot and this has helped my strength, balance and ability to function ‘normally’. Above all, I have learnt patience. Previously simple tasks are often frustrating now, but persistence pays off.

This may not be what you want to hear, but it is the best I can offer,

Colin, thank you. I think I must try & learn patience - old Fiona wasn't good at that either. I think as I wasn't as physically badly affected as I had perceived a stroke victim I expected to bounce back quickly ( I thought a couple of weeks - little did I know in December). The slow recovery is agonising & it's helpful to hear from you & the others who have kindly replied that this is normal. It's hard to realise that the old me may not return, that life will be different. It's going to take a lot of adjustments but mainly in my own attitude. Thank you all for listening.

Thank you - it helps to know that others understand. It has been difficult to explain to family who must be fed up with me being fed-up & moaning.

Thank you 

Oh I’ve been like that, I think it’s because we loose our independence and become a bit fearful of what is going to happen but it does get better, just takes a long time. You’ll be fine I’m sure.

Hi Fiona

...your post really resonates with me...it describes the way I felt in the transition from post-acute to chronic stage of the condition. I was 51 back in 2011 when I got hit so I been doing it for 8years...

...your post describes 'all consuming' and 'feeling resentful'and sensory overload also of being stolen- I empathise, all these elements...alongside of nobody understanding -traumatic doesn't cut it...

Like you I always enjoy debates/discourse etc- time will come for these...you will find and enjoy actively pursuing...

Even though body is broken your biggest fight will be to keep it real in your head...keep calm and steady - it is a journey on which you may learn more about yourself and what your capable of overcoming...

You have done the best thing for you by finding this brilliant forum...Here you will gain knowledge of stroke/brain...receive understanding, empathy,support,comfort... It's a lifeline for people like us,who walk the walk...read the responses you have received closely and try to take some comfort from others experiences... You can beat this...sleep,drink lots of water,nourishing food,take medication and when fatigue hits be happy and mindful to rest

 

...chat in future...warm wishes

Good attitude Fiona. You will undoubtedly loose your patience during recovery. If you can, try to ensure that its a short term outburst and that its just between your mind and your heart.

I have repeatedly commented how slow things move. I felt this a lot at your stage, I now am more used to it. 

Anything you want to discuss, many of us are here for you

Colin

I have just noticed this on line from Fiona mairi it was as though I had written it I had a stroke in2013 while at work I was 63 I was rushed to hospital and although it was a big stroke I had no disabilities my speech was fine too  but I had all the symptoms the other person had and I’m afraid still have  but I managed to get back to work in about 9 months only part time  but I made it  I also felt I wasn’t me anymore  my personality changed  it is better than it was but I hate going out feeling dizzy and unsteady at times and confused I make myself go last year I was feeling much more confident  but a few weeks ago  it came back and I have panic atatacks so I’m not in a good place I’m hoping the better confident me comes back soon I have become good at ordering on my iPad thank god because I can’t shop now it’s s too stressful 

Hi Fiona,

My name is Fran and I had a TIA/ mini stroke in July 2018. It was the week of my 71st birthday.

Like you, my life has changed dramatically since then. I can walk fairly well and use public transport, but my concentration has gone right down- not completing things I start before being distracted, etc. I keep putting off going shopping for new clothes and I’ve forgotten the recipes I used to cook for the family.

Physio exercises have helped and I’m attending GP Referral to the Gym sessions and doing some swimming. But my left leg and ankle have lost flexibility. It takes longer to dress/ undress and I feel quite vulnerable. 

I’m afraid this isn’t really advice, but over the last few months I know balance has improved and things get better if I spend time with friends & family or go walking in & around London’s green spaces. 

All the best to you and stay as active as possible. 

Hi Fiona,

 

I am not sure if this will help You at all but some memories are; Yes it is very 'irritating' to be told that You 'look well' when You know that parts of Your body simply do not yet ' work' I think mainly because there is an assumption that because you 'look' well then you 'are' well and people overlook the daily struggles that are now part of Your life.

 

I managed to return to work 3 years after my stroke and have 'managed' more than a year now back in full time employment. every day is still a'challenge' but I have also found it therapeutic to 'have to' get up, get organised & dressed and get to my place of work. Fatigue is ever present and an issue to deal with but even my 'stroke specialist' at thehospital recently told me that it would just 'take time'!!

hi my name is john i had my stroke july 2018 when you see me would not think that i have had a stroke apart from a small limp i alway have a buzzing in my head .and keep fearing the bad thing are going to happen to me that i will not live long some day i feel like giving up i had been told that i have very high anxiey and feel like crap evey day but all the test have come nomal ,it all in my head and make you feel so down

Hello! I’m Rose and I had a stroke in January.  After reading posts on this website I have learnt a lot.  It’s becoming clear that I have to stop saying ‘I’m fine’ when I’m not.  Outwardly I look no different, maybe a little drained and tired. However I’m so tired and, the new word I learned, ‘fatigued’ all the time. I spent two nights in hospital over a weekend and got straight back on it when I came home.  Only immediate family knew what had happened.  I went to my Pilates class and my chair exercise class and tried to carry on as normal! It’s only now nearly 8 weeks later that I realise that I can’t do it.

i read about stroke fatigue on here and also that my brain needs time to rewire . I never knew that! I am trying to accept that I have to slow down and pace myself.  I also think I need my husband to read these posts so that he can understand my situation and how I feel and how it’s affected me.  Also I need to appreciate that he is probably feeling as uncertain about it all too.

thanks for listening 

 

Hi John. Welcome to the forum. I am sorry to hear of your anxiety, but it is a common factor amongst survivors. I am three years post stroke. In the early days I expected to die at any moment. These fears ease, but every now and then they return. I now live each day at a time and try to appreciate each minute of each one. Value every small thing that happens to you. I wish you all the best.

Hi Rose and welcome to the forum. Post stroke fatigue is an unwelcome part of survival and recovery. I still have mine three years later. I have to have bed rest for an hour every day, but in the early days out of hospital the fatigued knocked me for six. I had to learn to listen to my body and not overdo things. It is by far the best way of dealing with fatigue.

Yes, your husband will be filled with uncertainty and it will help him if he reads these posts. I never dreamt that I would have a stroke and knew nothing about them until I had one. Recovery is slow, but you can get quality of life back, but it will require patience. Good luck to you.

Try googling 'A letter from your brain'. Show it to your husband.it helped me understand the effects of stroke.

In the spring of 2015, at the age of 71, I was sitting with my wife one evening when I realised I couldn’t lift my right arm. Both my arm and hand were numb. I immediately suspected a stroke because my sister-in-law had been left paralysed down her right side and unable to speak after a major stroke. We visited her most days to try to help her communicate, and I had read everything I could about strokes.

In fact, we had been discussing my sister-in-law’s situation when I realised my arm had gone numb. I ran through the Fast checks in my mind: there was no pain, no dizziness, no symptoms other than my arm. But I remembered the "t" in Fast – time – was the most important. I asked my wife to call 999, deciding we could argue later if I was wrong.

A first responder paramedic arrived in about five minutes from his base five miles away. He did vital signs checks and agreed with my tentative diagnosis so called an ambulance to take me straight to the stroke unit at a hospital some 25 miles away.

Once there I was quickly examined. As the symptoms had not worsened, I was kept in under observation. But when I got out of bed to go to the bathroom in the middle of the night, my right leg would not work so I pressed the bell for help. In seconds a small army of people were there to take me first for a CT scan and then to a bay where a drip was fitted, blood samples were taken and a doctor did whatever doctors do.

Those first few days were very confusing because although I seemed able to think clearly, I could not speak or understand what people were saying. I made sounds that I thought were speech but could not make myself understood. 

I was also beginning to understand what was being said. The first complete sentence I followed was in a conversation I overheard between a doctor and a physiotherapist: “I don’t think he will walk or talk again.” I decided then and there to prove them wrong.

By the time I was moved to the rehab centre, six weeks after my stroke, I was reading, talking and moving my legs in some semblance of walking, albeit all of them badly.

Then the serious rehab started. Every day I spent at least an hour in the gym, with exercises back in the ward too. The nursing assistants were a wonderful part of the team, becoming friends and gradually withdrawing assistance as I could do more. My speech was beginning to recover - well I could make noises that the staff began to understand.

I began to use the voice recognition of my iPhone to practice speaking, and later reading, because I was determined to speak and read again and the iPhone was my constant companion. It didn't limit me to an hour a time or get bored trying to understand me.

After four weeks in the rehab centre I returned to my home, which had been prepared by the amazing NHS teams. They had turned the dining room into a fully equipped hospital room with electric adjustable bed and all the gadgets I could need. My downstairs bathroom had been changed to accommodate me, and as soon as I got home the team started to call. At least four times a week a pair of physiotherapists would treat me for an hour and an occupational therapist would come for at least an hour a week. At the end of six weeks of home treatment I could do everything I could do before my stroke – but slower and sometimes differently.

I’ve been told by several healthcare professionals that my attitude has made such a difference. I’ve never given up. I try to do whatever task is given to me without protest. And I’ve accepted that complete recovery is not reasonably achievable but I’m going to fight for every bit that is. 

The only cloud on my horizon is I still have not regained my fluent speech. People meeting me for the first time describe my speech as good but, although my mobility is OK and I can move my arm a little, they are just irritants. But my loss of fluent speech is hard to come to terms with. But, hey, it could be worse. As long as I concentrate on what I can do, not on what I can't, life is good.

I have come to terms with the fact that my life has changed - and I look forward to exploring what the "new" me will do. And I am certain that, despite this major brain attack, I am happier than I've ever been. No longer do I "work/sleep/work/sleep - Oh are you OK my darling wife - work/sleep/work".

Instead I have found I have loving family and old friends, made some new wonderful new friends, deadlines don't exist, and I have time to smell the roses.