Hi, I am new to this group, I had a stroke on 3/12/19 I have had no help or advice since leaving hospital until yesterday the stroke association came out
I feel like my whole world has been thrown upside down even though my stroke was not as severe as others.
Hello and welcome. I imagine you are not alone. I had my stroke last May and haven't had any support either but I am doing fine in terms of recovering the things I lost the ability to do. It does take time, and lots of practice, but it does improve over time. Good luck with your recovery.
Joan
Thank you for replying Joan. I have been so frightened and anxious it will happen again. Well done on doing this yourself as it is very tough indeed. X
Oh I think we all feel like that and I am not sure it goes away completely but I found it did reduce over time. Now I just get on with my life, I had no idea it was coming and it rocked me totally, but now that I know I just keep taking the tablets and checking my BP which is the best I can do. Hang on in there, it is hard, but there are plenty of us around!
Joan
Hi Jayc, it seems that stroke support is a bit of a post-code lottery, which is pretty disgraceful as it's such a common occurance, unfortunately. I had to make a lot of fuss to ensure that my husband saw a stroke specialist/consultant following his stroke, and if I hadn't made constant enquiries about his medication, he'd still be on a high dose of Aspirin! You need someone on your side who is willing to make waves and to get you the appropriate support, hopefully the Stroke Association will have started this process, and have signposted the way forward.
I think someone on this forum described their own experience as if: "someone has taken my life and shaken it violently and all the pieces are scattered". This seems to be a common feeling to stroke survivors, so you are not alone. It seems to improve with time, but takes a lot of understanding, and this includes the understanding of friends and family. You will receive lots of good advice and support on this site, from others who know exactly how you are feeling.
If you have time, try googling "A Letter From Your Brain", it's quite an emotional read, but will reflect many of your current concerns and emotions. It's very important that you have sufficient rest, to give your injured brain time to repair itself. Take good care, be kind to yourself, and let us know how you get on.
?
Thank you so so much for your kind words and advice it means the world to me
Hi Jayc,
I had a subarachnoid hemorrhage (bleed on the brain) in April last year, once I got out of hospital I had a occupational therapist visit twice but because I was able to make a cup of tea, shower & dress myself she advised that I didn't require her to visit. A couple of months later the OT called to say there was now a stroke nurse in our area and she would ask her to visit but the OT called a couple of days later to say the stroke nurse advised that I hadn't had a stroke so there was no point in her visiting?? I've found that trawling through the internet to find answers has helped. Good luck with your recovery x
Having one's world thrown upside down is an apt description of the effects of a stroke. What sort of problems are you facing that we can help you with?
Deigh
Hi, I know how you feel, it's a scary place early on but it does ease with mine, I had my stroke a year before yours, 4th December 18 but over a year on I feel in a much better place. Things do get easier with time. It's always there but other life starts to take over again x
Thank you xxx
It's all such a big shock and as I have had no support it's hard knowing what is normal after a stroke. Also because of the fatigue and headaches I am getting on the right side of my head.
xxx
Hi Katy,
Sorry to hear that you have had a tough time too. My stroke was not that severe luckily enough I could walk (dragging my left leg ) and my left arm. I think it's the shock and emotional side is bad too and that I need support with as I am frightened to go out alone as I'm dizzy and have this headache. Some people get lots of help depending on where you live xxx
Hi Jayc - I know what you mean about feeling as if your world has been turned upside down.
I was 60 when I had my stroke, working at a job I loved and looking forward to an imminent (month long) holiday. I'd never even spent a night in hospital. Like you, I wasn’t as badly affected as many other people are but initially found it very difficult to even accept that this had happened to me (I argued with the doctors in hospital about it!).
It's now almost 18 months since I had the stroke and my life is different than it was before. However, it's still a good life and I’m looking forward this year to having the holiday we had to postpone. I'm also just about to start work again, albeit only one day a week.
I think it's natural to feel the way you do but if my experience is anything to go by, it will ease. I had a lot of help from the Stroke Association and because of them I now go to the gym three times a week with my new friends, who are other stroke survivors. I still see my old friends too so I actually feel in some ways that my life has been enriched. There’s a huge amount of advice on here too and people are very supportive of one another.
If I could give you any advice, it would be to listen to your body and to your mind and do what's best for you. Try to start to accept what's happened (and I know that’s easier said than done). You'll feel emotional and that's okay, it will ease over time.
Good luck.
hi
the forum has people with every kind of experience. as some put it there's no minor stroke. whatever happened to you will cause great changes. I am nearly 4 years post stroke and was fortunate to have had a lot of support both from family and professionals. I have had to accept that I am disabled. my left side was severely affected. at first I couldn't walk. I can walk short distances with the aid of a stick. I got back to work after about a year but it didn't work out. it was very stressful and in the end I lost my job. long story. it is a long hard road. the fatigue seems to affect us all. it can be managed. learn what triggers it and pace things. almost all contributors to this forum report emotional changes. it is really common. it eased for me over time. it was intense in the early days. your brain has experienced a traumatic injury and is in shock. it takes time to settle before recovery can begin you have to be gentle with yourself. physiotherapy can be helpful. it isn't a cure. if you have weakness as a result and any movement, you can work with what you have to strengthen weaker muscles and strengthen the neural connections. much of my challenge is physical. cognitively I was spared too much damage, there was some but I haven't had the difficulties others have reported. there is massive grief for a life lost. and huge levels of frustration as I am sure you will have experienced. things will change over time. you can't hurry it and you may not recover to how you were pre stroke. one tip I found helpful was to think how you were just after the stroke rather than dwell on how you xwere just before. it is easy to say and you may find it too trite. but it focuses on what has changed since the event. for veterans like me one can easily forget what has changed over a stretch of time. I keep a journal which also helps to remind me. I am shocked that you are not getting local support. it does seem to be patchy across the country. hopefully this Stroke association will help connect you with the right people. it is early days, that's probably not much of a comfort, but the science and the experience of others shows that prospects of recovery are positive. stroke association encourages the use of the self description:"survivor" and I think my fellow survivors tend to endorse that. it is a reminder that we did survive a potentially lethal event, and there's all to live for now. it is hard and frustrating but you still have your life to live. I wish you well
in solidarity
Tony
Bless you ! I am sorry to hear you have had a tough time too. I am really struggling with the emotional side of things today and have shut my self away from everyone, you kind word and advice mean a lot to me
Tony has summed it up well. As he says 'there is no normal', so just accept any problems you have as unique and see what you can do to better them. The only thing common to survivors is the tiredness which can be explained as the body working hard trying to heal itself.
I am in my sixth year of recovery. I have had to turn my back on many of the things I was capable of before the stroke by am still working constantly to improve my speech as well as my guitar and keyboard playing.
Deigh