Hi everyone. I've only just joined this group in the hope some of you will share this experience & understand me better than anyone.
I had a stroke in May this year at the age of 36. Apparently I've made a good recovery in most ways... I can walk, talk pretty normally, stay awake, remember stuff... but I don't *feel* normal and I'm sick of it. I feel like my life was ruined. I feel like if one more person tells me to be patient because it'll all be back to normal eventually, I'm going to explode. I was never an angry person before but I'm so angry about so many things now... my partner is the only person I have nearby, he's the one who saved my life, so I don't want to take it out on him. What can I do?
Joanna, Welcome to the forum. There are lots of good people here who will help you but, more importantly, here you can let your feelings out. Many of us can empathise with you. I still have left sided weakness and walking is hard, but I can do a lot more than I did. Quite early on I ‘accepted’ my stroke, but that does not mean I do not regret my old life and what I did then that I cannot do now. I am afraid many people are afraid of stroke and some cannot acknowledge you have had one. Others want you to be well so constantly tell you that you are. I have learnt to let this wash over me. Yesterday two old friends said, ‘you’ve done so well..you don’t look like you’ve had a stroke’. Well, you could have fooled me....I walk slowly and awkwardly and my weak hand can still jerk a bit...of course I’ve had a stroke! However, my life is so much better than it was. Yours will get better too, you’ll see. Good luck to you.
Well said Johannamak.
I doubt that you will be back to normal at any stage. Your brain is damaged and so you cant be the same as before. The brain will not regrow the bits that are dead. It will work around the dead bits so you may function again, but its impossible to be as you were.
I think you need to acknowledge that you are a new person and you will develop your life afresh. Probably all friends will be new. Maybe the anger will then fade.
You no doubt look outwardly well and I have the theory that its impossible for others to see us look well and to believe all is not well. It is just how humans are wired.
Only another SS will understand.
I have told a lot of people I am brain damaged. Perhaps I have been unwise. I really ought to say "you cant see inside my head". But I am too outspoken.
I try to celebrate that I now have a new life. It is different from prestroke. But I am trying to enjoy the differences.
I find counselling and also relaxation classes are a great help. Also smiling makes a huge difference.
Is your feel that all is not normal, in fact post stroke tiredness, or as I call it, stroke fatigue ? Many of us have it and its hard to describe. Is there any physical pain or is it pure anger ? No 2 strokes are the same.
You arent alone. Lots of us are out here for you.
Hi Joanna and welcome! I have recently just passed the first year anniversary of my stroke. Like yourself, in the beginning I was angry and bitter. I couldn't understand - why me? I didn't smoke, never touch alchohol, normal weight, went to the gym 3 times a week and yet other people who did all these things that cause strokes didn't have one. It was an emotional rollercoaster of anger, self pity, jealousy, bitterness all rolled into one. This rapidly turned into feelings of utter grief for the person I was. I felt like she was dead and I was left with this person that I didn't know or want to be. I found that after the first 3 months, about the stage you are now, the fear of having another stroke had gone, the fact that I could walk again and drive again and I had my independence back, life began to get acceptable again. True, you get sick to the back teeth of people saying "but you don't look like you've had a stroke" and how well you look and even "well, you must be better if you're out looking round the shops" but short of walking round with a sticker on your forehead saying "I've got brain damage" you just have to let it go over your head. You gradually learn to like the new person you are. I wrote a post on my stroke's 1st birthday a couple of weeks ago - I now refer to me and - 'strokey me' ! 'Strokey me' is my little friend that follows me everywhere! I won't go into it again on here but I've grown to like my new little friend. She can be a pain in the backside sometimes like all friends but we kinda rub along OK together now! I know you'll get sick of hearing it's early days and it takes time but things do improve in time and normality does resume but at a slightly different pace than before. Hope that helps.
Hi, it seems that this is one of the things that can really frustrate stroke survivors. I know that my husband has developed a range of coping mechanisms, and this doesn't always work in his favour, because his staff think he's completely ok again. (I also have to remind myself that he still has problems, and as Colin & John have pointed out, we cannot see the damage done inside). I've tried to reconcile this by accepting that when people say "You're looking good/you're doing so well" etc etc, that they are well-meaning and trying to be encouraging and reassuring (this is also true of medical professionals). As annoying as it is, I think it's just a natural human reaction to try to give positive messages. My husband reminds his staff/friends, and me, almost daily that he can't remember stuff, takes an hour to write a six sentence email, feels knackered just getting shaved, showered etc.
In terms of recovery, you are still in the early days, and things will improve, but possibly not as quickly as you would like. Do you have a copy of your MRI scan? We found that showing people the scan with the 'hole' in my husband's brain helped them to realise that there was a chunk missing, and that any deficiencies could be attributed to this 'mess' left by the stroke.
I sound like a cracked record, try google-ing "Letter from your brain" you may find this an interesting read, and you can also guide friends to this piece of writing. Doesn't take long to read and is very moving, so have the kleenex at this ready.
I'll stop rambling now, best wishes to you & your partner, things will improve, take care x
That's a great post and surely will be a boost to Johannamak, as it's from a very personal perspective. It's a very a positive attitude 'cos you can't change what has happened, and if you don't accept the new self you can't move forward. Thanks, hope you have a good day xx
Thank you everyone for your replies. This one from Colin really caught me... the 'you can't see inside my head'. That's exactly it. Yesterday was a very depressing day for me. Usually I'm home alone but my partner is on annual leave so I couldn't have my little strop alone without him wanting to know what was wrong and why I was upset... he is very understanding but he will never understand everything. I just get them 'you should be grateful that it wasn't worse' & 'this time next year it'll be OK' but I'm not feeling very grateful. And saying that, makes him think I'm stupid. Yes it could have been worse. But everything I was able to do, which was A LOT, until 11th May is now impossible. For a person like me, always in control and in charge, busy, ambitious, energetic, competitive, not being that person is unacceptable, that's what my mind can't accept. But maybe I'll learn to accept that. I'm damn well aiming to be all those things again to some extent.
Can you tell I'm having an angry day again...
And this! Perfect description - 'emotional rollercoaster of anger, self pity, jealousy, bitterness all rolled into one'
Hi, I think your feisty response to the stroke is going to provide the 'drive' you need to make progress. The stroke survivors on this site are all strong characters, they haven't rolled over and given in, they've fought back. I bet they have plenty of angry days, they often refer to having a good old swear as they carry out seemingly 'easy' tasks.
When my husband has difficult days, they are often followed by a period of progress, as if he's re-charging to move forwards - it's not definitive, and won't be the same for everyone, but looking back through notes I've made there is a connection. Grant yourself time to be angry, or frustrated, you've had a traumatic experience which no-one can share with you. Decide your priorities - maybe return to work, or something specific that you want to achieve - and focus on that, you will have to make some compromises as you can't do everything at once. My husband took a long time to accept that he was making progress, it seemed as though every day he would complain that he wasn't making progress/he was going backwards. Then gradually he just started doing more and more of his normal activities. He manages his own company, employing 11 staff, so he has a lot of spinning plates to keep in motion. You will make improvements, but they won't be instant, they will take time. I don't want to sound negative, I want to be realistic, and you don't sound like the sort of person who would believe me if I said it was easy!
I will look forward to reading your posts and to hearing of your certain progress. Finally, don't forget to rest and take some down-time, that's really important, your brain will thank you for it.
Very best wishes, and positive thoughts
Is it possible you are trying to do too much too early. I cant cope with trying to do everything recoverywise. So I have, for many months, taken the worst aspect and try to deal with that. The other stuff waits in a queue.
Of course partner will not understand everything. It is very good to hear they understand any of it. You have a good one there.
I do hope you mean you had a bad day and not that depression is getting a grip. Stroke brings waves of depression and it needs to be fought off. The delay caused by clinical depression is undesireable. Smile a lot.
I am pleased I was chosen to survive. I would like to know why it was me who lived. People telling me I should be grateful it wasnt worse are totally ignored. And as for "it'll be OK next year" well I cant swear on here and in any case its sunday and I dont swear on sundays. I try to be kind and think that people dont know what to say. Stroke is so poorly understood. We are cinderellas.
I plodded along for the first few weeks and then I had counselling by a stroke specialist counsellor. It took her about seven seconds to diagnose post trauma shock. And then six weeks to help me through it. What a lot of tears fell. But that was an essential part of my recovery. I shudder at what went on in my damaged brain for the first months.
You cant be exactly as you were. You can have a lot of the charactristics.
A fine line to be found.
I must admit that I havent come across an angry SS before. Frustrated, annoyed,dismayed but you are the first angry survivor. I keep thinking you must slow down and let the anger go, excess anger could cause a set back. I would really want counselling to help me through that part of recovery.
I will now stop burbling and go and have the first nap of the day
The voice of experience once again giving excellent advice. I know it's meant for Johannamak, but I always take strength from Colin's posts, they have helped me so much during this past year. If only we could bottle these pearls and hand them out on the NHS as SSs leave hospital
Best wishes to everyone for a good day xx
Thank you Nic
Stroke is so complex and there are always exceptions. As a non medic I can give my opionion which is probably true in 99% of cases. The doctors and nurses can not give theri view coz they know it will be wrong for 1%.
I can just about recall the early months, but as I move on the memories fade. I would not have known any stuff when I left hospital. I learnt so much from the angels on the old forum who hand held me throughout.
We have last all that wealth of experience when the old forum was closed. I could find my way around the old forum,. but I striggle with this new version.
Its just the most perfect warm day down here in rural Essex. Not a cloud in sight.
Same here in Norfolk, almost cloudless skies. Shame we've been making crumbles, and scones during the day!! We've just taken a cream tea round to share with friends so had a lovely day. Husband now pretty much run out of juice, so chilling on the sofa now, can still see the lovely day though.
We are blessed wih East Anglia weather nowadays. When I first stayed down here the East wind was a serious factor. But now its just faded away.
Rose and I have been to the afternoon tea service. A few hymns a few prayers then a nice tea and cakes. Back home we sat in the garden with a beer/white wine. Our much adored cat came out and sat nearby.
Now I will watch the GP on TV followed by recorded cricket highlights followed by football highlighs. From first day home I have been able to watch TV. Struggle to read a book, which is a shame.
Good nights sleep last night. That makes so much difference to my day.
And roast pork with all home grown veg also helps.
Best wishes to all of you out there.
Almost living the dream! Sounds like a day to remember - I would love to have been in Monza watching GP for real. xx
Pretty good day for me. Mr Hamilton winning. England winning the test match and Watford winning .I had a season ticket at Watford. I cant remember them beating Tottenham for years.
Time to catch up on some sleep
Thank you for your reply. It's nice to hear about your husband, being a career-focused person is what I need to know about. I don't have my own company like he does but my job is very important to me, I've worked in this role for over 12 years, I've learned so much, and earlier this year I was doing so well. I won't bore you with the details but this was going to be the best year for me, I was super proud of myself for what I was about to achieve (honestly it feels like someone saw my best ever day and clicked their fingers to say 'that's enough success for now' & turned it off). And now all of that feels like it has disappeared... although I am allowed to start work again, part time 'light duties', from next week... I hate the thought of not immediately being at the top again (I don't work in sales, thank god!). I can't wait to do my normal activities, like you say your husband was happy to start doing. I'd deal with all this so much better if I had a schedule for everything - but I know that's just my personality, my control freak/organising obsessive that needs that. I know it's not possible. One half of my brains says 'calm yourself down' and the other says 'prove that you can do it'. Someone else commented that maybe I'm doing too much... and they're right. I hate that. Is your husband upset about any of what happened anymore?
Thanks for your reply. You're right... I think I'm trying to do too much. It's so, so hard for me to accept that there even is a thing such as 'too much'. There wasn't before. I did a lot of things in a week before this. Yesterday I walked to the garden centre 10 mins away, sowed some houseplants in pots when I got home, and decided to try and make tomato chutney. It took me all day to do those things and by the time my partner got home from work, I was so exhausted that I couldn't figure out how to time fish & chips to be ready in the oven correctly... which then of course made me upset. And now I'm upset about it again, just writing it down. But today I'm just crying, rather than wanting to throw something out of the window or swear a lot. My partner is at work so I feel I can cry more, which makes me feel better. I'm looking after my neighbour's dog today, she doesn't mind me crying & I'll probably be more cheerful later just because of that.
Next Wednesday my employer are letting me go back & start 'light duties' on a part-time basis. I can't wait to see how that goes. Luckily I work from home so if I need to have a cry or a swear or a sleep, I can. My partner says being able to focus on my work tasks will take my mind off what happened for at least a part of the day. I think he's right. After starting some work, my next target is going on a train by myself before Christmas. And my main aim is being allowed to drive again, next May. That will cheer me up no end (I live in a rural village & without driving I can't go anywhere else, that alone is driving me bonkers). I may not ever me 100% me, but I need targets for things that are as near to it as I can get.
I never wanted to do one of those Talking Therapy things or go to a survivor counselling group so I'm glad I found this website. I was always better at reading & writing things, than phoning, anyway - and I've always preferred my own company to lots of people. At least I can read again now, which I struggled with when I first came home from hospital... so that's progress. I am pleased about that, now that I've written that down. I'm finding it easier to believe/understand things I've read here, than being told them by people I know. So thank you for replying to me.
I hope you have a good nap today - I know I will!
You bring back so many memories. Oh those days of not "doing too much" despite no one being able to say what "too much" is. And of taking a week to do what I used to do in a morning.
I have now progressed to taking just four days to do a half days work.
Pets dont judge and they accept you as you are. I never had any pets at all, not even a goldfish or budgie. But one year ago a cat appeared and asked us to adopt him. He now rules the house and I utterly adore him. I can look after a cat properly. And cat accepts me as I am. Seeing him tapping on the kitchen door each morning is wonderful. And he is pleased to see me.
If you can do a day without tears that will be another step forward. I still cant do a funeral nor watch "long lost families" but other than that the emotions have settled right down.
Longer term your employment suggestion and your partners comments, will be spot on. I do think its too early. Much too early. I took on a tiny voluntary job last month and it has slayed me. Overwhelmed. Cant cope and so on. I will get through and do the tiny job properly but no way would an employer accept me as yet. I will not be taking on paid employment as I have a very nice pension.
I find travel unexpectedly hard. Maybe its the jolting around or maybe I cant run for cover. But I do find it hard. I like trains and would love to travel to London just for the train ride. Maybe another year, not yet.
I had one to one counselling, at my home. And some group counselling in my village church. I do recommend these. The church is an amazing source of help and support. They know everyone !
I struggle to read . It takes up far too much of my limited energy. I can read when I have to. I can watch TV and use the PC.
Please note that only another SS understands what you are going through. Even those that care for an SS dont really know. Its good that you are beginning to grasp what other contributors are writing. There is so much to learn. So much. I have "angels" who write to me. They are further on than me and their wisdom is priceless. They have helped me so much.
You are going very well indeed. Please watch for doing too much. It can set you back and thats very hard to take.
Same here hope your getting better