Hi my name is Jane and I had a stroke four weeks ago, I don't know how I'm supposed to be feeling, I'm frustrated, angry and get emotionally drained.
Dear Jane
Please try to be kind to yourself. There isnt any way that you are supposed to be feeling. We are all different but we share many aspects.
At four weeks I was smiling a lot (this really does work, several smiles every day) I was drinking lots of liquid as my brain needs extra fluids at this time. And I was thinking how lucky I was to survive. Why did I live when so many die ? There has to be a purpose to my life being given back to me.
I was somewhat blessed by an unusually rapid physical recovery. So each day I could discover which bit of me was starting to work.
I also twigged very early that no one else could "mend" me, it was all down to me. Help and support was gratefully received, but it really has been up to me as to how well I recover.
Do get hold of the stroke association leaflets. They are good. You will find the one on emotionality will help you understand some things.
Lots of us are here for you. You are not alone.
Colin
Thank you Colin, that has really helped.Physically I'm okay apart from a dull shoulder ache, and my neighbours and friends say how well I look, but it is inside I am in such turmoil, lack of sleep doesn't help, and at 3am I feel so overwhelmed with grief that it takes a long time for my husband to help settle my nerves down. I know I can get pills from my doctor but I don't want to be reliant on them.
its so nice to speak to someone as I have felt quite isolated from the healthcare professionals.
Thankyou
Dear Jane
One of the odd things that most of us deal with is "you look so well".
I have never looked so well, I think the blood thinners give me a tan, plus the fact that I spend so much time in my garden, getting fresh air and a good tan.
It is quite a joke amongst us long term survivors "you look so well".
It is, in my opinion, important to get decent sleep.
This may take a year and more to achieve, but it is important. I keep a diary and I can then track "how the sleep is going". I first worked out how many hours night sleep I needed, and mine is 7.5hours. I then had many day time naps that I term stroke naps (i came to love them as they are so nice) and a pattern could be detected.
These non physical problems are far worse than simple physical issues. I am delighted you are already physically ok. In your shoes I would use this to promote exercise, which in turn will help the mental state.
I was 90% paralysed. I have had atrocious stroke fatigue and moderate other things such as emotionality. I also have memory loss and a bad rate of learning. I am an FCA and I couldnt deal with my own tax return nor bank statement. But after years I now have a much improved standard of living. Things do improve.
Mine was a right lacuna infarct. Not massive. But It was during sleep so I got to hospital perhaps six hours after the stroke hit.
I am not telling you this for sympathy, but in the hope that you can piece together what has happened to you.
Corona is another terrible issue, which I didnt have to deal with.
Please keep positive. I have been in contact with hundreds of SS and its always the positive ones who come through with a good outcome.
Colin
Colin how on earth did you cope, mine seems insignificant to what you went through, I really admire your positivity.
My discharge notes say it was a Right LACS. I was walking to work Friday morning,and found suddenly I couldn't walk in a straight line, my speech was blurry, and I didn't feel right, I sat on a bench toget me bearings and then continued to work.I felt a bit dizzy but otherwise okay, I work in a chemist, but then it happened again and I rang my husband to bring me home.Back at home I rang my surgery and explained what happened and they said comedown straightaway to have my blood pressure checked, by this time I was fine, blood pressure okay, saw the doctor and he said if my blood pressure was low he would be worried, returned home ? by lunchtime sitting in the garden my symptoms came back, fortunately my sons girlfriend was here and she's a practise nurse and recognised that I was having a stroke and rang for an ambulance straightaway. Personally I think she saved my life.
Thankyou for all your positive thoughts it's really helping me ?
Hi Jane - if you would like someone to talk to (as you mentioned in another post) you could ask to be referred to the Here For You support service. This is a series of weekly telephone calls where you have a 30 minute chat with a volunteer who will be someone who has also had a stroke. The idea is that you have someone to ask questions of and learn from their experience (or just have a nice chat!).
If you ring the Stroke Helpline on 0303 3033 100 they'll be able to advise you. Alternatively if you are in contact with one of their staff they'd be able to help.
Thankyou for that information I may well do that ?
Dear Jane
I think your day of the stroke was less common. I didnt know what a stroke was, but as I tried to get out of bed I fell on the floor and couldnt move.
For you, it happened in stages and thank goodness for sons girl friend, maybe she saved your life but certainly she saved you having more damage during stroke.
I think you suffered more than me. For me it was bang, on floor, paramedics arrived in two minutes (how he did that I will never know.) I live in a village three miles from the fire station and seven miles from the nearer hospital. So how did he get to me so quick. The ambulance was here in just five minutes. So mine was all over in a flash. You suffered for many hours.
I soon fell in to semi consciousness and the morning was gone in no time. Then I was in the stroke ward. I couldnt move. I assumed paralysis was permanent.
The stroke was later determined as an ischemic right lacuna infarct. I much later realized that right lacuna means deep down inside the brain where medical science has not ventured. Well not in late 2015.
I did not suffer. felt awful on and off, but i am a right wimp and did not feel too bad. I was so impressed at the ambulance being met outside by staff. That I went straight to a special stroke resus zone and that I was told nurse Maria would not leave me . And sure enough she sat with me until I was taken to the stroke unit. The ward sister came down to resus and said she would be with me until I was in the ward. It was sunday. No porters available but still sister saw me in to the stroke unit.
On day three I suddenly gained the use of my limbs. I got up and walked. Five physios surrounded me but I could walk (well stumble) out of that ward and up the corridor. Physical recovery was fast.
But then stroke fatigue was the big deal. And that just eased over the years.
Memory has not returned, I keep a diary and I re read the six plus months that were wiped out.
I am now 4 and a half years on and recovery is pretty good. I still cant manage a funeral, due to emotionality. But I can move tables and chairs, so I do lots at the church hall. And I make the tea and coffee. And wash up. So I feel useful. I can not be the high powered accountant any more, but I am probably of more use making tea and coffe, waiting on tables and so on.
What I want to explain is that it is slow, slow,slow. That very few people understand what is going on and that the support afterwards is just terrible. Hang on to sons girlfriend, She will be a massive guide to get you in to the right help zones.
I will shut up now. Have a glass of red wine (yes I can booze just a little) then eat supper.
I know I will get good sleep and I wish I could give that or share that, with you. Get sleep and things will progress.
Lots of people on here will give you help.
I was given fabulous advice by stroke survivors that were a year or two ahead of me. A couple of them are now permanent pen pals.
Besy wishes
Colin
Dear Colin
yes I will certainly hang on to my sons girlfriend she was a godsend when I needed her. I wasn't in any pain throughout my ordeal just felt strange and not well.
ive not felt I'll at all, just so very very sad, emotionally fatigued, and to do the slightest thing, like iron a couple of pairs of trousers, or clean the wash basin, just drains me.
im not used to just sitting around, I've lots of hobbies, but feel like I can't concentrate on any of them.
None of us slept last night, as I was an emotional wreck most of the night, today is better as I'm determined to beat these emotions, I didn't ask for them to keep making me so miserable, sorry to rant but it does help to write things down.
??
I didn't ask for this, I was quite happy with my life before all this,in fact it was more then great, I have a wonderful husband,a lovely part time job I've enjoyed for 16 years, my life was wonderful, until now, now I feel like I've fallen into a black hole I can't get out off, I cry all the time, can't go out on my own as I'm to frightened it will happen again, I'm depressed feel trapped, every morning it's the first thing on my mind, how am I going to be today. I hate living like this, I can't see a light at the end of the tunnel. I know I've got of lightly as some peoples strokes have been a lot worse then mine,and I should be grateful but I'm finding it so hard. I know I can get pills to help but I don't want to be dosed up on pills to be happy again. I want ME back. ?
No you did not ask for this to happen and most of us did nothing to bring one on.
You will climb out of that black hole. YOU will climb out, and then you will work on getting the new me into action.
Your brain did not like the stroke attack. So it will scare you to avoid getting another one. Instinct will cause you to keep away from another stroke. But your common sense will soon find that a second stroke is unlikely. The medication, exercise etc means you are far less likely than most, to get another stroke.
Please try to look at things in a positive light. You have survived. You will recover. You will have a chance to do some things differently.
I think you know that emotionality is a common stroke thing. And that depression will attack you if you cant fight it off.
The fact that you write sensibly on this forum will help others. And it will form a start to your recovery.
Smile a lot. False or forced or fake will do.
Think positively every day.
Colin
Hi hun , I'm so sorry for you, things will get better ,but slowly, keep smiling and take all the help that's offered to you.i too am having a hard time but slowly I'm having a few good days. You can always talk on here hun someone will always answer , things will get better soon .x
Hello Kenmore, just wanted to reach out to you and tell you things will slowly get better. The first few months following a stroke can be very frightening and this covid lockdown isn't helping a lot of us.
The fear of another stroke is something a lot of the contributors on here can relate to. It took me months and months to get to sleep properly, I had a real fear of another stroke but 2 years on nothing has happened and I sleep really well most nights. You will be on medication to protect you from another stroke and should continue to take it and maybe change it with your doctors advice until you get the right combination for you.
Feeling depressed and emotional are all part of stroke and sometimes even though we may not like it, medication can and does help. I've been taking Mirtazapine for about a year now and I feel more like my old self now, it's taken this long to get the dosage right and I started to take my blood pressure tablet at night as well. The combination has really made a difference.
I also had a fear of going out alone but my husband and I used to go shopping and I would go in one shop on my own and we'd meet up after I'd bought what was on my list, sometimes just one or two things at the start. We did that for a while but now I can go out on my own with no worries. It's all about realising oh I can do that on my own just like I used to and nothing terrible happened. It's such an irrational fear but you can beat it, just do what we did. Sometimes we went into the same shop and he would leave me to go and look at something for a few minutes.
I guess I really wanted to say don't worry, these feelings you've got at the moment are all to do with the stroke and you will start to feel better as the weeks go by. Don't disregard medication, it may just help you over this period when you're trying to make sense of it all. If there is a stroke association group near you I would really recommend joining them. They will totally understand how you're feeling because they will all have been there I'm sure.
Take good care of yourself, sorry I think I've written you a long reply but really wanted to show you that things do get better.
Ann.
I had a major stroke four years ago and a mild one two months ago. I have fought back, but am still partly disabled. However, I cannot make myself return to the old me, I can only fight for the best quality of life for the new me. Yes, it's frustrating and a daily struggle, but I will not give in.
Although you are not yet the person you were, remember to be the best person you can be. I hope life improves for you soon.
Thankyou so much, sometimes I just feel so low, as if there is no way back from this. I'm not having very many no tears days yet, but it certainly helps to talk/write to people who have been through this...it makes me feel not so alone
?
Thankyou, your message has really helped, I shall certainly try that with my husband, I feel as if I want to reinvent myself, buy a whole new wardrobe and throw the old me away because I know she won't be coming back,but that sounds so very scarey.
Thankyou for your kind words Colin.
Hi Kenmore - Everything you are feeling is normal. I know it's not what you want to hear. Grieving for the person you was pre-stroke can be, and certainly was for me, the hardest part of the emotional rollercoaster a stroke gives you. I hated the new me. It took me almost 18months before I got used to 'her'. I felt like a split personality. I've referred to it on here as being 'me' and 'strokey me'. It's like 'strokey me' was sat on my shoulder permanently and no matter what I did, I couldn't shake her off. Over time, I realised that 'strokey' was doing her best to get me to as far as near normal she could. I found I grew quite fond of her and now 3 yrs on, she has gradually left me and gone her own sweet way. Occasionally, she will pop up and make me talk gobbledegooch but we all have a good laugh about it and move on.
You will make progress and life will get easier and the fear will pass. Gradually you will be able to take on the tasks you used to do but you have to allow yourself time to heal. Be kind to yourself. If you Google "Letter from your brain" - it's hard reading it through at first go and you will burst into tears but it sums up how your brain is feeling at the moment. Take care x
You'll find bits of your old self will come back but I think a whole new wardrobe is a very good idea.
We're all here to help you if we can. You'll get to a place where you'll be able to cope better you just need to give it time. Keep reading this site there's lots of advice on here from stroke survivors (SS) - by the way you're one as well.
Ann
Hi, it's so sad to hear of another person having to suffer the effects of a stroke, BUT, you are a survivor!! That's the first positive thought to consider - you're still here, and the only way is forward ?. This is an amazing site (even though it has some technnical issues), you will always find someone to offer advice and encouragement. Even just knowing that you're not alone is like having a safety net in place. Give yourself time to rest, and allow your brain to do the re-wiring it needs to do. Little by little things will improve. Take good care xx