JenniH23 Posted November 18, 2019 Share Posted November 18, 2019 Hi I’m 11 weeks into my recovery and after being unable to focus on anything when I came out of hospital my vision is now back to its normal self but I have developed blind spots. My optician has said let it settle so I asked my doctor for an ophthalmic assessment but i have to wait until January for an appt. it’s really affecting my life. My eyes are trying to adjust but I’m getting loads of eye strain and my brain seems to be seizing up. I can’t drive so my independence has been taken away. I don’t know how to cope with this. I don’t want to get out of bed in the morning as I know I have to deal with it. Anyone else experiencing similar problems? Xx Link to comment Share on other sites More sharing options...
Chelle C Posted November 19, 2019 Share Posted November 19, 2019 Hi Jenni, Welcome to BTG, so sorry to hear that you suffered SAH, you have come to a great place for help & support, although we are not allowed to give medical advice as non of us are qualified to do so. What we can do, is share with you our own experiences of SAH, 11 weeks is still very early in terms of recovery, I had problems with my sight after my SAH although mine was more to do with not being able to separate words, if I looked at something that was written down or tried to read a newspaper all of the words just ran together. I had an appointment with optician about 6 months after my bleed and he couldn't find anything wrong, things did settle eventually, I don't have any problems now, I do notice a bit of blurred vision if I am tired though. Give yourself time, you have to remember that there has been blood across areas of your brain, our brains don't like it because it's not supposed to be there, so it will be doing all sorts of things to try and compensate for that fact. It needs lots of time to heal after suffering such a traumatic event. I know there are other members of BTG who have had problems with their eyesight, and I'm sure they will be along to share with you their experiences, I know this is easier said than done but try not to stress to much about it because stress can actually make things feel a lot worse. Your best friends at this stage in your recovery are rest and staying hydrated. Make sure that you rest when you need to, fatigue is one of the major problems after a bleed and you will see it talked about a lot as you browse through the site. Also I would say, learn to listen to your body and your brain, they have both suffered trauma and they both have their own ways of letting you know when they have had enough. We have all been sent down a road that we would never have chosen to go down and the recovery road after it can be a bit bumpy at times. You are a survivor as we all are here at BTG. As survivors we all also know how difficult the early stages of the recovery journey can be, we are here for you and we will help you as much as we can, you will get some brilliant advice and a lot of understanding from people who have been through the same thing. Any questions you have just post them, we might not have all the answers but we will do our best. Wishing you well Jenni Love Michelle xx Link to comment Share on other sites More sharing options...
JenniH23 Posted November 19, 2019 Author Share Posted November 19, 2019 Thank you so much Michelle for those inspirational and kind words. Everyone keeps saying early days and I’m trying to remain positive. I think things are slowly improving or I’m just adapting I’m not sure which. The thought of Christmas and all those lights and decorations that I find hard to see fills me with dread. But i have a 6 yr daughter and 2 step children to make it magical for. We’re taking her to see Frozen II on Sunday and that’s going to be a challenge for me but I’ll do it. There’s so much positivity on this website. So many brave survivors. I am truly thankful to still be here to tuck my little girl in to bed at night and give her a big goodnight kiss and tell her I love her. Best wishes everyone lots of love jenni xxxx Link to comment Share on other sites More sharing options...
Macca Posted November 19, 2019 Share Posted November 19, 2019 Hi Jenni, Welcome to BTG! It is early days for you, as you rightly point out. Things do get better over time and you learn to change and/or adapt to enable you to cope. You are right to contact your doctors but there are things you can do to lessen the effects of bright lights. You can wear sunglasses, albeit with different strengths, to suit your needs. On computers you can buy anti- glare screens or you can get glasses specially for use with computers. I use them myself. See your optician or get referred by your doctor. You are thankful to still be here to be able to give your children those embraces that you mention. Every parent should do that, regardless of being ill or not. You have a heightened sense of appreciation of the ability to be able to do it because of what happened to you. I bet they are thankful too, even if they don't fully understand it yet. But in time they will, just like you'll continue to get better in that same time. Slowly comes the dawn of understanding, slowly comes the dawn of better health and the bond between you will be better than any glue you could ever buy. Enjoy Frozen - you'll have the weather to go with it by the looks of things - but enjoy the company more. Build the memories and take a few photos and one day you'll sit down with your girls and say "Do you remember when.......?" That's what life is all about and what you are lucky enough now to be able to see. I read your post with an appreciation that you have a renewed happiness in the realisation you now know what life really means. In the moments you wrote that, you truly grew up into a wonderful adult - but more - a Mum who knows what her children mean to her and what they will come to realise, that you mean to them. I wish you all the very best and enjoy the magic of the film and Christmas - kids grow up too quickly and before you know it, they will be adults too! Best wishes, Macca Link to comment Share on other sites More sharing options...
JenniH23 Posted November 19, 2019 Author Share Posted November 19, 2019 Hi Macca Thank you for such a lovely reply. I've been to the optician and eyes are not affected. It’s behind the eye so I have ophthalmic appt in January to assess extent of the problem. I’m trying to adapt every day. Shopping is so hard as there is so much to take in and so much I can’t see. My left handside is disoriented so navigating a trolley around a supermarket is also another challenge. I’m able to do school drop off as fortunately it’s at the bottom of our street. But I can’t see everyone the same and the school playground is daunting. I know its going to take time to readjust my life. And I hope that some day I may drive again. I live in Cumbria and it’s been frosty all week so yes we might get the weather on Sunday for the movie. Thank you for your support. Best wishes to you Jenni xxx Link to comment Share on other sites More sharing options...
Super Mario Posted November 19, 2019 Share Posted November 19, 2019 Jenni, when I go shopping I tend to go in an evening when the supermarket is fairly quiet as I get really disorientated in crowded places. You may well be able to cope better at quiet times. As for the film, I still can't cope with noise and watching movement, makes me feel very sickly. I have been to see films with the teenagers I used to mentor. I schooled myself to switch off to the noise and movement, almost like being asleep but also aware if the person I had taken made a move they shouldn't. Took some practice to do that. In fact now, I never watch television for the same reasons. Not the same but my SAH left me virtually blind in my left eye. Turns out it was Terson's Syndrome which was caused by the blood looking for an escape and forced its way down my optic nerve. When the blood dissipated it left behind debris, hence the sight loss. I did get it corrected by an eye surgeon who literally took my eye to pieces, cleared the debris away and gave me back my sight in that eye. Sounds awful but it wasn't and I had that done with a local anaesthetic. Without raising your hopes the blind spots may be down to something that can easily corrected. January will soon come round. Meanwhile, listen to your body and do what it tells you, nap when you have to and do not force yourself to overdo it. Recovery is all about taking tiny steps forward with the occasional step backwards if you try to do too much. Very slowly and steady is the way to go. Jenni, suffering from a SAH does give you a completely different outlook on life. In many respects I have found my new life to be preferable to the one I had formerly even though it left me with little sense of balance. Link to comment Share on other sites More sharing options...
Chelle C Posted November 19, 2019 Share Posted November 19, 2019 Jenni, Where abouts in Cumbria are you, I have a static caravan in South Lakes, just outside of Grange-over-Sands. Link to comment Share on other sites More sharing options...
JenniH23 Posted November 19, 2019 Author Share Posted November 19, 2019 Super Mario - Goodness it sounds like you’ve had a really tough time. Thank you for all your advice. Every day brings its challenges but I still have hope things will improve. I have good and bad days but I’m taking it slow. I’ve been looking forward to seeing frozen II since I saw the first one about 4 yrs ago. At the time I thought when the next one comes out my little girl will be 6 or 7. Didn’t ever imagine it would be like this tho. But she will love it and that makes it all worthwhile. Best wishes to you xxx Link to comment Share on other sites More sharing options...
JenniH23 Posted November 19, 2019 Author Share Posted November 19, 2019 Hi Michelle. i live in Penrith so had my treatment over in Newcastle at the RVI. Grew up in the Lakes as my parents used to own a caravan & chalet site. Do you live far away? Xx Link to comment Share on other sites More sharing options...
ClareM Posted November 20, 2019 Share Posted November 20, 2019 Hi Jenni as the others have said you are really early days in your recovery. lots of good advice given already and I will add to it by suggesting you get some noise cancelling earplugs to wear to the cinema. You will still be able to hear but it will soften the often loud soundtrack of a film. Noise is a major issue for me post bleed and I struggle in a noisy environment. Shopping has lost its appeal so I do a lot online much easier on the brain! I hope you continue to recover albeit slowly, we’ve all been there so keep asking questions and we will help with tips and suggestions if we can. take care Clare xx Link to comment Share on other sites More sharing options...
Chelle C Posted November 20, 2019 Share Posted November 20, 2019 Hi Jenni, I have sent you a Personal Message. Xx Link to comment Share on other sites More sharing options...
Catwoman23 Posted November 23, 2019 Share Posted November 23, 2019 Welcome to BTG. You can also follow up with the neurologist about the eye issues and might need to see neuro ophthalmologist as well. Goodluck. Link to comment Share on other sites More sharing options...
Winb143 Posted November 25, 2019 Share Posted November 25, 2019 Hi Jenni this site helps as we know we aren't the only ones, it is early days and the Docs say do not lift heavy things but when you have children you have to. Real world and Hospital world clashes !! Our brain has gone through a lot and it needs a rest. Somewhere on here under Inspiration is "A Letter from your Brain" and it tells us what our Brain has been through, I was scared when I eventually woke up and thought no "uh oh Win and doom and gloom " My daughter found this site and it helped her and it has helped me. As she was the one awaiting for me to wake up !! I saw people talking about life and everyday things and I got my smile back... As this is a place people have been through similar things to you and we can understand how scary and sometimes the same has happened to us. Good luck and Welcome to BTG (My abbreviation of Behind the grey) Keep chin up and remember we are here when you want to vent or just put it in writing whats worrying you xxxxx Or join in Keiths quizzes in Forums Green room xxxx "A Letter From Your Brain - By Stephanie St. Claire ©1996" is good to read. Link to comment Share on other sites More sharing options...
Skippy Posted November 25, 2019 Share Posted November 25, 2019 Hi Jenni Here's the link to the letter that our darling Win was referring to: https://web.behindthegray.net/articles.html/inspiration/a-letter-from-your-brain-by-stephanie-st-claire-©1996-r167/ Link to comment Share on other sites More sharing options...
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