Hi everyone, I'm hoping to talk to anyone who's in the same boat as me. Its alot so bare with.....I'm 31 and I've had two strokes. Didnt even know I had the first one until the second bigger one hit.i was 28 at the time and a single mum to 3 little ones. I'm 3 years in and just lost my dad on the 28th to a massive stroke. My mum had a stroke under 50 and my grand died of one too. I literally live my life in fear after watching my father take 4 weeks to pass away ( hes the little lovely in my picture) he was my best friend and I'm struggling so much atm. I held him when he took his last breaths and I feel half , well what's left of me went with him. I feel guilty that i sat watching him pass and was full of fear for myself . Is that my future?!!! Dad took a turn on me and when i got him to hospital he seemed ok again. No sore head, no face dropping ....no anything! He was speaking to me and his eyes literally locked to the left and he went stiff. That was it. 4 weeks in we made the choice to bring him home to pass away. The damage was far too much. He was blind, no speech, no swallow and couldnt move. The scans showed literally 98% of his brain had been wiped out. He was only on fluids tru iv for 3 of those weeks and they pulled the lot and just dopped him on morphine. I'm not even sure where I'm going with this post lol I'm sorry ...but I'm just so bloody scared! I hate strokes...and the world a little right now. And live in so much fear that the pain I'm in I'm going to put onto my 3 little kiddies. Its hard to keep going when you feel nothing but fear isnt it? Struggling to see the light at the end of this stroke tunnel x
hi I just read your post which is very moving and I wanted to reply just in solidarity. my experience is not similar, but I am also three years post stroke. I only wanted to encourage you to keep posting on the forum. there are people close to your own age on here, who are struggling with their role as a newly disabled parent. I am older and my children are young adults now, which brings different challenges. many of us have been through the early period of being terrified. and angry with the world. for ages Ifound it really strange even to be using the word stroke. I hated it and still hate what it did to me. I remund myself often that I did survive and whilst everything is a million times harder now I have my life still, and you have your children their love and yours for them. I won't attempt to offer any advice, you have huge things to live through. and you will live through them. all I can offer is solidarity as a fellow survivor. thanks for your courage to share your heartbreaking story. there are lots of good people on this forum who are here for you. so shout out whenever you want.
with love
Tony
Thank you Tony, the stroke association came out to me the other day after seeing a large donation linked to my name. Was after dads funeral instead of flowers. They are going to use my story for their next run of social media. It's so good this group. It's good to actually say the words to people who understand it. And I'm fighting to get better mental health support in northern Ireland with the stroke association. Mainly after my dad as he suffered mentally for two years before his death. He had strokes 2 years ago wich left him unable to work anymore etc. He felt so useless and had no help at all. Only what little I could get such as walking aids etc. I did take him swimming once a week to help was abit like the blind leading the blind but it helped so much. It's so lovely of u to take the time to write to me. And I hope ur doing ok after your stroke? It is such a strange feeling saying stroke so I get that. Young strokes seem to be happening alot more here. In my town alone I'm one of 5 and 3 living. That's very scary to think if but you are right I'm alive and lucky for it. Maybe once things settle as they are all so raw with dad I'll maybe see some light again.
I appreciate your words so much. Thank you x
hi again
and much sympathy for the loss of your dad. I am delighted that you have had some support from the stroke association. they are a good crew and struggle as so many charities do on small resources. this I know well as I worked in in the charity world in a senior role until recently. I was able to return to work after about a year. but it was a very unhappy experience and in the end I had to agree to step down. fortunately I got some compensation but it was an emotionally very damaging experience. I have posted about it previously and got some great support from contributors to the forum. I have been lucky to have strong support from my wife and my children. while I now don't have to struggle to keep working I am still working through the emotional battering I took from the acrimonious divorce from my job. it is not too strong to put it in those terms. all that on top of becoming disabled through the stroke is as much as I can manage. but let me give you some happier highlights:
during last year I spent a lot of time re learning to drive using an adapted car, and early this year was able to get my own car adapted so now I can drive again independently. this has helped. the stroke has affected my left side and I don't walk very well as my left leg is very weak and still not responding too well. I can walk a bit though which is a n improvement on the first year when I could hardly at all. my left hand is not yet functioning though I have been treated for the spasticity (stiffness) and fingers are beginning to loosen up. therapists seem hopeful that I could still recover some movement. so I live in hope. I am currently trying to get back to doing some gardening. I suppose one of the biggest moments of relief was when I came to accept myself as a disabled man now. it is a tricky balance accepting that and continuing to work for recovery. I don't expect now that recovery will mean getting back to how I was pre stroke. I am different now and still learning what that means. I didn't have a lot of cognitive damage and so still able to think, and I am especially happy that I can still read, and recently have been reading copiously. I still get very frustrated because I was an active person and loved to walk and work with my hands. so I am trying to rebuild my life. it certainly changed radically. if it is any comfort, I don't now live in terror of another stroke. I am aware of the possibility but the terror has subsided as I try and live now. I still have a load of emotional stuff to come to terms with and the love of my family and friends is the thing that keeps me in one piece.
so let me wish you well once again. you have much courage and will need it daily
take care
with love
Tony
Hi
sorry you’re having such a hard time. I don’t know the answer. Im 47 and had 2 strokes leading to the main one 11 months ago. First two were seen as migraines. I bury my head in the sand. Trying to carry on working but know I need to take it easy. So how do I cope? I’ve just put a deposit on a puppy and hoping that will give me s new focus. Be kind to yourself. You sound like an amazing daughter/mum. Take care. Jacquie
Hi, iv just read your message ( iv only been on the sit a couple of weeks). Im Ayisha i had my stroke about a yr and a half a go. I was 35 at the time and i too find it really difficult. Your story broke my heart and i am here if you ever need to talk about anything. I also have a 13 yr old boy so i know a bit about what it is like deeling with what has happend to you and having to look after a child as well. My husband is great though. Im here if you need to talk.