You’re too young to have had a stroke!

‘But you are too young to have a stroke!’ Those are the words I have heard the most or ‘you would never know, you look fine’. 

At the age of 40, 8 weeks ago I had a stroke and my world has been rocked!  I was abroad at the time and had been feeling completely well and the next thing I knew I was in hospital. I was immediately told I had a thrombosis in my head, but it was over a day later before the word ‘Stroke’ was used. 

I could not fault the medical care I received abroad at all - within 20 minutes of calling the ambulance, I was having a CT scan and receiving thrombolysis treatment. I am so lucky!  My physical symptoms disappeared within an hour and yes ‘I look fine’ because I have my limb function but nobody could prepare me for the cognitive difficulties I am left with. (I know it is still early days so these may subside)

The major issues I am left with are fatigue, sensory overload and EMOTIONS. Who knew having too many shoes and not enough storage would cause so much angst? Or the plant I bought 2 days ago, losing its flowers already would make me doubt my ability to look after myself? I could go on and on about what has caused my many meltdowns! Although they are getting better, there is no telling where the next one will come from!

Before my stroke, I was an outgoing person and in the first 2 weeks, I wasn’t fazed by leaving the house but this is not the case now. I think some of this is the anxiety of bumping into people and facing the ‘you not at work?’ Questions and having to explain myself. But I have soon learned my anxieties were and still are caused by sensory overload. I am finding conversations stressful; remembering the social rules of turn taking, being able to focus on what the other person is saying, comprehending what they are saying, thinking about a suitable response, thinking about and remembering the words I need for my reply then waiting for an appropriate time to reply is so exhausting and when these conversations happen in a busy or stimulating environment (light, noise and smells) it is very tricky. So it is easier for me to avoid than try to engage. (I feel guilty for needing to sleep for approx 3 hours afterwards) And that’s me on a ‘good day’. And going to shops or restaurants/cafes are tricky as sometimes the words just won’t come out so I can’t make my order. My speech has returned to almost 100% but when I am fatigued, I channel my inner sloth in movement and speech and the words won’t come out. 

Then there’s the fatigue. No 2 days are the same. Some days I am up bright and breezy and can cope with the day then  other days I struggle to get out of bed by midday and still need naps throughout the day. I am beginning to learn my limitations and am slowly beginning to know it’s ok not to be ok and although I ‘look fine’ I’m not. My brain has taken a battering and is trying to recover and build it’s new pathways. Time will be my friend by time to think is also a killer. I was told it will feel like a grieving process and for me, this is true - grieving for the person I was 8 weeks and 2 days ago; grieving for the life I had and the life I thought I would have in the future; The thoughts of ‘what could have been’ and the guilt of knowing how lucky I am to be able to tell my story and have the capacity to walk, talk and type. And then there’s the unknown - why has this happened to me? But more importantly feeling like a ticking time bomb waiting for the next one (the waiting game for test results and further scans is a killer). 

I know people mean well when they tell me ‘I look fine’ and ‘you would never know there was anything wrong with you’ but those words make me feel like I should be able to do more. And don’t get me started on the ‘but you are far too young to have a stroke. Are you sure!’  

As I said earlier, I was abroad when my world changed but received excellent care - within the 3 days I was in hospital, I received 3 CT scans, 2 MRI’s, brain scans, a bubble scan and DVT scans. There was no part of me which was Unscanned. 

I returned home 2 and a half weeks after my stroke and immediately went to see my GP and was seen at the stroke unit within 4 days. One of the first questions I was asked was ‘Are you back at work yet?’ That’s when the guilt about work started. It was only 3 weeks after my stroke and I was being asked that!  I returned to see my GP last week (7 weeks post stroke) and was looking to get signed off again and my GP asked me if it was really necessary and ‘is another 4 weeks not too long?’  I really don’t feel I am ready to be back at work (I work in teaching) due to the fatigue and continued cognitive difficulties but I am feeling pressured by the medical professionals but I will be sticking to my guns and not returning until I feel a lot better. 

My skills have changed. I was a dancer in my younger years and now I have no rhythm nor coordination but hope this returns. I also find reading difficult and cooking is a no-go. However, I have, in the last few weeks, taught myself how to knit and the sense of achievement finishing my first scarf yesterday was amazing (cue a further meltdown!). It will be scarves all round for Christmas this year. 

Anyway, I think this is enough from me for now. This is my first post and I am so glad I have found this page. I am struggling to find people of a similar age to me to share my experiences with and to rationalise my thoughts and fears with. (Sorry for the long post!!!). Thank you for taking the time to read. 

Hello and welcome! There are so many things you have said I feel myself nodding along and thinking 'Yes, so true' whilst reading. Most of us get the "You look well. You don't look like you've had a stroke" as if we're lying! I had a friend, sadly now passed away, who had cancer and the chemo she was having gave her a fabulous tan. I recall her saying to me "If one more person says I look well and where have I been for my holidays to get such a great tan, I'll scream!" I am 2 yrs post stroke and in the first 6 months I grieved badly for the old me. I was full of anger and disbelief and very bitter towards others as to how this could happen to me - non smoker, non drinker, healthy lifestyle, normal weight, 3 times a wk at the gym. It does pass and eventually you do get accustomed to the new you and the both of you will 'rub along nicely' as they say. The coffee shop syndrome is my favourite downfall! Like you, I have read the board 3 times and decided what I want. When I get to the counter mouth opens and nothing comes out - total brain freeze! I can describe what I want - you wouldn't believe how many adjectives you can come up with to describe how to make a latte. Luckily most coffee shops in my area that I frequent know me and know my favourite eats and my latte so that's made life much easier LOL! 

I was also a dancer in my younger days and my rhythm has gone too - I keep trying though! I can't read either because it frustrates me that I am reading but nothing is registering and I constantly have to re-read everything. Having my head down makes me dizzy too. There are lots of us on here that still suffer from fatigue. It's a pain and, for me, the worst part of my stroke. It has got better though and I have learned to stick to what my limits are and not overdo things.

I have found that GP's don't have much knowledge about strokes and the after effects. I am older than you (67) so I was retired when my stroke hit but there are lots of people on here who can give you help and advice about challenging 'return to work' plans by GP's and employers. At the end of the day,they are general practitioners and not experts so don't be frightened on insisting to see an expert when you feel you need one. 

Loved to read your post, it absolutely spoke to me. 

I wrote the longest reply but it’s disappered ?

I am 37 and had my stroke in December, I felt and still do at times feel exactly as you do and remember looking to find a similar person to share my experience with, to no avail, unfortunately. 8 weeks in I felt misunderstood and alone. Things do get easier you know, you’re right, time is our friend in this. 

Im hoping this posts!! 

Thank you very much for taking the time to read my post and also replying. Much appreciated! I know things will get better and enjoying being able to relive my pre-stroke days through re-watching movies and box sets. Most of them I know I used to think were great, many watched multiple times before but watching them now is like watching them for the first time! 

I guess I just get frustrated with the different emotions I am feeling - anxious to go out and about and annoyed at myself for staying in but know I need to take the time to heal without becoming too consumed and allowing myself to wallow and then this becoming the norm. 

 

Thank yoh for reassuring me that that everything I am feeling and experiencing is a normal part of the healing process. I am looking forward to finding the new me!

i am so pleased I have found this guide!!! 

I have just realised that the site has censored one of my words in my original post beginning with L and ending in y which means not telling the truth!  It never ceases to amaze me that even the most simplest of words get censored on here!  

It is scary during the first few months but I always remember the Consultant saying to me at my check up that I was on all the right medication to stop me having another one and as long as I took the tablets (another word that gets censored sometimes!) and followed all the advice I'd be given, I should concentrate on living life now and not looking back in fear.

I had a stroke back in April and was 34 at the time. I am still none the wiser as to what caused it as all tests and scans have come back normal. Originally they thought they had found a small hole in my heart which gave me some reassurance it wasn’t anything I could have prevented and also could be treated but now on further investigation my heart is fine so now i’m Back to wondering why and is it going to happen again. I was lucky in that physically I recovered very quickly but still struggle with fatigue and emotions, especially after going back to work 6 weeks ago. My gp was also not very supportive of me being off of work but luckily my workplace were. But I found it so much harder going back to work than I ever thought I would so give yourself time and listen to your body. It’s very difficult when everyone is telling you “you look fine”, and “you’d never Know” when on the inside you feel terrible and vulnerable. :-)

omg, reading this feels like I am reading myself.

 

exactly no one can see the pain and fatigue so for everyone else you are a very very normal person. But inside me, the fatigue and pain are killing me 24/7 I feel overwhelmed and my emotions cannot explain I feel suffocated. oh yes my GP was/ is not helpful at all. my first meeting with her after my stroke in March she said please I don't know how to treat person with stroke at your age which is 40.

My last appointment with her was on Tuesday and I was sobbing I got so many issues now and her answer was this let's send you for talk therapy which she should have done in March.

Yes they could not find the cause of my stroke too. In the must be long term depression and stress.

If I have suffering from this why not send me straight away for therapies why wait for 7 months I could have had another stroke attack.

Yes going back to work then house work …living one normal day has become very difficult. And then keep hearing this sentence ….BE POSITIVE,

 

One advantage of my stroke I have started swearing ;)

Welcome on board Nadya.

Strokes are not reserved for any particular age group. My "neighbour" in the stroke resus room was aged just six years. And of course there are stroke victims before they are born. 

At your tender age you will probably recover faster than us oldies. But as we are all different its hard to prove. No two strokes are the same.

GPs can not cope with us. The good GPs try, but are probably not trained. And in any case they dont have the time.

Yes you should have been referred for counselling. It cant do any harm and it did me the world of good. It will help with your recovery.

Many of us have multiple issues and we have to quietly work through them. Our brains are damaged and that damaged bit is gone forever. It doesnt grow back. But what we do get is that our amazing brain will "work around" the damaged bit. I take the view that I have to rest to let my brain do the working around stuff.

Stroke groups can be good. And do contact the stroke association.

I have read quite literally thousands of posts from fellow SS.

The ones who recover best are the positive ones.

The ones who smile cope better.

We are less likely to have a second stroke because we are medicated, eat properly and rest a lot. And do a bit of exercise. 

If swearing helps then blast away.

Writing on this forum often helps get our issues out of our minds a bit.

I promise you that recovery follows. Not back to how you were pre stroke, but those awful pains and worse still the ghastly emotions do ease and you can then build up "new Nadya".

Bless you

Colin

 

Hi Colin,

 

Thanks a lot for the lovely reply.

I really want to enjoy this life but pain, fatigue and tiredness make me feel dead.

I do all my responsibilities for the day but I don’t get the time or strength for myself.

I have lived my life with many failure and depression. After all those hard years I used to think I will get the chance to relax and enjoy but no I hit by this.

Now I want nothing ......... just peace, wind and sea.

I was a very bubbly person but now I avoid everything and prefer to be home.  

Or maybe someone with whom I can share how I feel, my emotions, my dreams, my past…..

I was a person who never knew the name of any medicine, hospital smell used to make me feel sick and scared.  It has been almost seven months and I still cannot believe what has happened.

 

Your sentence “ The one who smiles cope better”  brought tears to my eyes…….

 

Thanks a lot, I will pray for all of you, Please keep shinning,  keep smiling,  keep trying and keep hoping for happy times.

Love Nadya xx

Hi

I can sympathise with you regarding the fatigue and emotions, I get very tired, I had my stroke 15 months ago been back to work 6 months. I do feel very lucky and it could have been a lot worse  so feeling tired I can deal with and the emotions just do as your body tells you have a nap and rest. Take  care.

Dear Nadya

Most of us are very restricted in what we do in a day. For over three years I could do most things for 45 minutes but then needed a proper rest. 

I think your pain will go in time. Mine has. I think the fatigue will ease. Mine did. But the tiredness remains. I can tell the difference between the stroke fatigue and sleepy tired, but I dont think many of us can.

I did have one bout of depression many years ago. I learnt from that and I will not let it back in to my life. Immediately after stroke I could feel the depression attack me in waves. I think this is common. I can bat it away and thats what I have done.

I also stressed for England. But the stress and depression has gone.

For the frst two years after stroke, many so called friends did try to get me to help them (i am a tax , pensions and investment specialist) and I had to fight them away. They do not take no for an answer. I can not do that work anymore. Not a chance. But I do a tiny voluntary job and I make tea and wait on tables. So I have a useful existence and it has no stress at all.

And I potter in my rather large garden.

Peace wind and sea. Yes yes yes.

I have a little machine that plays white noise overlaid by waves on the beach (or rain or babbling brook etc). It is known as a tinnitus relaxer. About £30 including postage. Some NHS areas supply them for free. I have used it many times to get me to sleep or just to relax me during the day.

I benefit a lot from my relaxation class (free courtesy of my village church) and my basic yoga class, £6 a session. It might be a bit early for you. Your recovery journey is long and slow.

I do pray for you and many other fellow SS. I sit in the sanctuary facing east which is a field and a lovely row of trees. And thats when i send my prayers to you all.

There is decent medical evidence that explains why a smile is so good.

One of my SS friends got married about two years post stroke. That has been, so far, a very happy marriage. OK she isnt superwoman anymore but she does enjoy a good life. She is ahead of me in the recovery journey and she has guided me so much. She and two others are my guiding angels. Only another SS really understands.

I hope you have seen my cat as my picture. He adopted me two years ago. I havent had any pets before. Well he doesnt mind that I have had a stroke. He accepts me exactly as I am. I love him to pieces. And he is always around, letting me share his house.

Because I take frequent rests, I watch a lot of TV. And I enjoy that. Never thought I would enjoy daytime TV but I do.

I hereby promise that things will improve for you.

Thanks for your lovely reply Nadya

Colin

 

I don’t think so I have ever read such a beautiful reply in my life before.

I am so glad and proud on you that you have been so strong, and you are fighting with all the odds so well. Doing yoga and attending the relaxation class is very important. You know meeting new people listen and share either words or smile bring lots of positivity. Now a day’s people don’t have time to meet, smile or even an eye contact. Because everyone is busy on PHONE ….

After reading your reply I really want to see that (sanctuary facing east which is a field and a lovely row of trees) must be a part of heaven.

Yes, did the right thing there is no need to do such a work in which you can’t find peace and happiness and yes, I did see your pet cat picture she/he looks extremely bold and proud. wow.

It does feel like that life has just got stopped or I am in someone else’s body. Its not me at all, I was very energetic person I miss myself I miss being wild and naughty I miss being me. But I think so I should stop running after shadows and face the reality.

I felt so happy after reading about your friend getting married and so happy that you found your guiding angels here. Isn’t feel so good to be loved and been looked after you feel your worth.

Thanks a lot for beautiful and peaceful reply once again.

Kind regards,

Nadya

Dear Nadya

Flattery will get you everywhere. Many thanks for your very kind comments.

I live in a large village and people do talk to each other. Its so nice to go to the local shops and know that someone will pass the time of day.

I met our new Rector yesterday. He starts with us in late October. He would be so pleased to hear your comments about the sanctuary.

The village church, built about 1320, burnt down in 1971 and the villagers built a new church that resembles an Essex barn. We came to the church in 2011 and they were fundraising for an extension. The extension has the sanctuary for meetings of about 12 and the hub which is a hall for about 50. We are right next to the village hall. It is very plain and there is housing nearby but I always sit facing east. 

The old ruined church does have a splendid outlook. It is on the outskirts of the village in  countryside with a view in the distance of the river colne and alresford creek. It can be a bit wild. I go there a lot to care for the marble stones that make up the memorial "wall".

I hate mobile phones. They are such an interuption. I do own one but use it perhaps once a year. It stays in my car. And the landline has so many cold calls. I dont use the landline much.

I agree that life stopped in an instant when the stroke hit.

I think we have to accept that we are no longer the same as before. Your lovely bubbly self has gone away. You will develop a new Nadya over the next couple of years. I find this hard because the old person is still partially lurking within. And we lose the years during which we are recovering.

We do better if we look at what we can achieve and not what we have lost.

My lovely village is being spoilt but so many new houses.

I do love to sit in bed before breakfast and watch the ocassional horse ride by along the road that has plenty of lorries and a few double decker buses.

And now my big male cat, Sooty, comes up on my bed and licks away at his fur before settling to sleep. So thats a lovely start to the day. Sooty is 6kg with big sharp claws and teeth that would do serious damage. But he is so gentle with us. Never a bite nor a scratch. Just as well with our thinned blood. I adore my cat. First pet I have ever had and I am just silly with him.

Be positive

Smile a lot

You are not alone

Best wishes

Colin

 

 

 

Dear Colin, 

Your replies are most relaxing and entertaining, and I really really wish I knew how to be flattering. Atleast then I would not be alone since I can remember.

I have read your reply as soon as you sent it and guess what I have been thinking what to send you. To be very honest you should write stories or blogs please consider.

So far, I have read your reply two to three times just to make myself relaxed. They’re extremely beautiful and magical.

I cannot explain how I really want to see this old church and glad how everyone helped to maintain it.

And MOST important sentence I have read: 

We do better if we look at what we can achieve and not what we have lost.  Thanks a lot. it does have a lot of strength, hope and courage. 

I am very glad that you have river colne and alresford creek near you for me Nature is the best healer if you can feel and let it do what it can. Magic!

How I can see this ( I go there a lot to care for the marble stones that make up the memorial "wall") ???

Say hello to Sooty, I really wish to have pet but as I work, and I am totally against to leave pet home alone and how they feel all day long. But I know how you feel to have Sooty and how you both feel to be there for each other feels like. Blessings…..

Yes, most cruel thing around us now a days is mobile, but like all other new inventions it has its negative and positive sides but for sure it has more negative then anything else. Yes yes for sure landline is very cold thing.

You are right Nadya cannot be the same again and this new Nadya will develop with in some years but you know in this process what is hurting most your own family they do not understand so I have cut down and keeping very less interaction because it hurt me to death. I was not that sensitive before but now each comment, instructions or anything hurts me. Same people when I use to play and laugh like crazy used to tell me how old are you? Behave!!!….and now when I don’t move too much or say I am tired again same question how old are you? But now this question is extremely painful. 

I am so thankful to you its blessing to read your replies and someone telling me Keep smiling…..thank you once again.

Very Kind Regards,

I wish I can look after you and write as you do. 

Nadya

It was 25 yrs ago my nephew died from a stroke.. He was 9yrs old.... So your never to young, that I was the first time I even heard of a stroke, then I had my own back in may 2019, and know how fortunate we are to survive one, I enjoyed your rant and raves as I can relate to all of it, but you should never feel guilty, I always wanted to be a good reader as i have seen  many people including my wife having a big smile with a sense of achievement enjoy a book but I always fall asleep, so I do audio books David sucha and a good murder mystery! Can't knit but my daughter is a great knitter.. So I get my scarfs from her, I try and not to look back on what I used to be able to do as it is up setting, I used to say there was a young Steve and an old Steve up there, with young Steve saying remember when!! Now it's just lonely old steve left...... 

Dear Nadya

I am pleased that my posts entertain a little.

I am dyslexic so words don’t flow for me. Like many dyslexics, I am much more comfy with numbers.

So for me to write on the forum is something I am pleased with myself. Forgive if this is repeating myself. But I was thrilled a couple of weeks ago when a national monthly magazine “Your cat” printed my 500 word article on “my first cat”. They even sent me a reward.

I have written articles magazine and newspaper pre stroke and I wrote three fictional books. I didn’t bother with going through the minefield of getting the books published. They were all stories set in 1959. I researched 1959 and I still have memories of that year. They are black lace and include lots of railway history.

You make me feel very warm when you say my writings have relaxed you. Because of stroke I am very keen to say all the nice things that happen. So I tell you about my village and if you ever get to see for yourself then you will realize its not a pretty village. I pick out the nice bits and ignore the ordinary bits. Recovering from stroke I do get so thrilled when I can do something new. The biggest thrill was when I walked in the hospital ward. I was the only one to walk. The cold floor on my bare feet was just sensational. There were five physios on the ward. All attractive young females, and it was flattering when all five helped me on that day that I walked. The next day I had to make breakfast for one of the young ladies. The stroke unit had a kitchen just for us stroke survivors to use. She didn’t eat the breakfast ! But it was one step towards letting me go home.

The marble stones are similar to gravestones, but each stone has the name and date of 13 people. There are 16 of these stones and at this moment, I have the 17th stone being engraved with the first 4 names. The stone will then be added to the church yard. Then, when more names are required, I arrange for that. Dealing with recently bereaved family is difficult but usually rewarding.

I think that one of the most sad aspects of our disability is that no one understands. Just other stroke survivors understand. Family are not good and friends mostly melt away. I say we should all move to the Isle of Wight and all be together. Others suggest the Isle of Man or Dubrovnic or Malta.

You are so right about the pet. Sooty (his name is Sooty Oscarthemagnificent) came to us when he was cold wet and very hungry. He looked about 12 years old and tatty and mangey. We fed him outside for a few days. Then in the kitchen. But at that stage I thought carefully before formally taking him as mine. The cost could be quite high and I was prepared to pay. He needs daily attention and I am always at home. He needs some love and affection and I have that to spare. So it is good for us to have  a cat. He is lovely to us. He is a big cat (possibly a small panther ?) with evil claws and big teeth. But he is always gentle with us. Never scratches never bites. We love him a lot. And he is just beautiful to have as company when I am on my own. The vet says he was just two years old (so now 4 years old) and he is now having a lovely coat. When he comes on to my bed in the morning, its like having an electric blanket. SO warm. He is not a pretty cat, but to me he is perfect. I would die for him.

Keep those smiles coming. If you are sad then make a false smile or a fake smile or a forced smile....they all work.

And lets look at the positive things.

 I have read thousands of posts from SS and its the positive ones who get the best recoveries.

You are not alone.

Colin

Hi I am new on here. I had my stroke 6 days ago. I have no mobility or communication issues but I feel a bit brain foggy. I am just in disbelief at the moment and I cant sleep because I'm frightened I will have another one. It's great to have found this place to talk to other people 

Dear Colin,

So I was absolutely correct you, you are the writer. I am so proud of you. So how I can read those 3 books wow. Please advise I would love to read and please also I would like to learn to write like you do. I have not got good grammar skills and vocabulary I have not got much.

Have you watched film Railway children? It will refresh your memories regarding trains and time. Beautiful film.

That is why all day I wait for your reply its very exciting. I am very thankful to you for sharing your thrills after stroke and this Hospital one is perfect walking bear foot on cold floor and I think so those five attractive nurses must be lucky to have around you. You should have show off more with your telling a story skills.

I can understand your village must have lost some of its beauty but I am pretty sure it is better then to be in city. I am very fortunate I live in very busy town but I live towards end of town in between one rugby field and three football grounds around our fields we have fruit trees so every spring I get immigrant parakeets soon they will leave around  mid-October. It’s a most beautiful feelings to have them then I am very fortunate my bushes have Robin families so I don’t have to wait for winter to see I feed and take care of  them year around, also fattest pigeons you can ever see and my love fluffy squirrels people call them worse pests but not for me. And then I  have cutest and fattest  cat ever it’s a stray cat. I call it KitKat I used to look after her but one day she attacked my squirrel and had it for her dinner now my heart is broken………

Gravestones I don’t know what can I say. I don’t want to have one for my grave I would prefer to be forgotten, no name and date.

Oh my Sooty is one well pampered and loved Cat, Hello Sooty keep behaving and keep spreading love.

Oh yes I am well trained in false smiles and also for very fakes smiles….as because I don’t want to discuss same topic every time someone meet. And most important reason no one can understand our pain. Yes yes yes lets go how about Wales?? Everyone lets go I cant wait to fly away from this same painful pattern of life. I have given forty years of life to others now it’s time to be selfish with leftover Nadya!

Take care Colin, keep educating us and keep seeding hope and strength in us.

Kind Regards,

Nadya

Hi Colin 

Thank you for accepting my friendship request.

Hope all is well, because my new writer friend hasn’t replied to my last reply. 

Take care and looking forward to read your reply. 

Kind regards and prayers for you, Nadya 

Hello. Thank you for taking the time to read my post and also for your reply. 
 

How are you doing now? Like me, your stroke was recent. I hope things for you are going well and you are looking forward to meeting and finding the new Steve? I am making progress daily so still learning who the new 'me' is. 
 

I have perfected my poker face and learned how to console others when they are shocked after hearing my news. 
 

Keeping looking after yourself!!

 

m