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Showing content with the highest reputation since 27/06/18 in all areas

  1. 11 points
    It is15 years tomorrow since my life was changed. In fact it is so long ago now I tend to forget the date of the event, I have to look it up. So far back, the date has almost disappeared from my memory. Looking on the positive, my life has changed for the better once I recovered the best I could. No point in looking at the negatives, you can't change what has happened. Grasp what you have with both hands and move forward the best you can under the circumstances. May take ages just to make a little progress but determination will help. There is a future after SAH, maybe not the future that was planned but a different future. In my case I feel that my life now is much better than I envisaged pre SAH
  2. 10 points
    Once of the most distressing things for me post SAH was my ability to cope with cognitive demand and sensory overload. It was painful. In time that’s passed since, 7yrs, I have learnt more about my triggers but also how to pace and rest in ways that’s right for me but I still know flooding can and does happen. I still wear sunglasses and earplugs on many occasions and still alway carry them. lots of people come to site and struggle with the sensations and how this feels And I think this is a great education video that explains it credit to Northern Brain Injury Association
  3. 10 points
    Wow! Where did the time go! 8 years and I'm still here! 1st September 2010 changed my world and my gratitude to everyone who help save my life and rehabilitate me is as great today as it was at the time. I've also come into contact with so many wonderful people through this site who have helped me and to whom I have tried to pass on some of my own experiences. The bottom line, though, is that I survived and continue to live my life with optimism, grateful to many people and the progress in life sciences that makes it all possible. Thankful that I live in the 21st century! Oh - and six years ago today, I got married to Sandra = another reason to celebrate!
  4. 9 points
    Well here I am seven years on and still feeling really positive. I have my routine check at John Radcliffe on 5th May now that fills me with dread as I hate going back to where my life was hanging in the balance but my sons tell me that I should see it as a positive as that’s where they saved my life. I'm doing really well, still have a few little niggles but nothing too bad, I’ve travelled such a long way and will continue to do so. To any new unfortunate people all I can say is hang on in there, your life will improve, even if you never get back to who you once was you will learn to accept the new person and be very grateful to your new life because I know I am! Good luck to everyone and may we all continue to move on in a positive manner. lots of love and luck to each and every one of you xxx
  5. 9 points
    Welcome Jojo. You are not an impostor here. A lot of us have had bleeds that are minor compared to some of the rest. But as I am often reminded, a bleed is a bleed. You are a survivor among survivors! Some points that may help: NASAHs often have no underlying cause. This makes it hard to accept that it will not occur again. But statistically, I was told, unless there is a cause found, the odds it happening again are no greater than the first time. Getting on with your life can be scary at first, but it will get better There may be long-term affects. I and a lot of us still have headaches more often, memory problems, maybe some eyesight problems. You did go through a traumatic experience You injury is not visible, so don't expect others to understand all of the time. Follow up, for some reason, is not great for a lot of us from doctors. However, the support and information on this site is invaluable. Sending prayers, Chris
  6. 8 points
    Well I can't believe it is 5 years today since my head went pop, don't know where that time has gone. I do feel I am doing ok, still have my issues with memory, fatigue and the usual things but I am coping with them a lit better than I was in the beginning. This last year wasn't my best, had a few mental health issues and found myself in a situation where I was having some very dark thoughts, I won't go into detail about those thoughts as I wouldn't want to upset anyone, I immediately went to see my GP and told him how I was feeling, he arranged some help and I got through it, I had a lot going on at that time as it was coming up to 1st anniversary of my mam's death and also a lot if hassle with DWP, I think it all just got to overwhelming, but I dealt with it and came out the other side feeling a lot better. I really want to thank everyone at BTG, it is like having a second family in fact you have all been more supportive and understanding than my blood family, for that I will always be eternally grateful, it is my safe place, a place I know I can come to without being judged. I want to say a huge THANK YOU to Karen and all of her team of moderators for giving us this site, I for sure wouldn't be where I am today without it, my BTG family have been my saviour over the last 5 years and I thank you all for being there with support and encouragement, I love you all dearly. I will end this with an extra special THANK YOU for Jan, thank you for being such a very special friend Jan, I will never forget the day we first met, we were both very nervous, don't know why we were worried, we hit it off straight away, you are a beautiful person both inside and out. We made a great connection and I want to thank you for always being there for me, always at the other end of the phone when I need someone to talk to, i am truly blessed to have you in my life and even more blessed to have you as my friend, I don't think you realise how much you have helped me over the last few years, love you to bits lovely lady. I am looking forward to the next 12 months and whatever it brings, all things good I hope. Thank you everyone, love you all very much. Love Michelle xx
  7. 8 points
    Hi, I just wanted to briefly say where I am 1 1/2 yrs out. What made me think of it is, I spoke with nurses who have known and worked with me forever and this is what THEY see. Firstly, i am happy and doing great. I am working almost full time.But again, it is best to let Others tell you how you are, because like most men, I am in some denial and want to push forward. Here goes: 1)I am more laid back about life. This has been the best gift of this thing. I fly and visit family, play golf, run, and dont work so hard. My ICU doc told me all young people he sees with this are uptight workaholics and that was me. I was kind of a miserable workaholic before and not now. YEAH!!! Thank you!!! 2)I cannot learn some things. I read a lot and am learning spanish. Why???? Bcz i am trying to prove I can do it. But the other night, i went to a salsa class and just could NOT learn it. 4 steps, could not do 4 steps. I can learn on my own (ie:learning spanish) but if someone verbally shows me, i can not learn it. simple things.Frustrating. 3)this is funny, but i put things in particular places and they MUST be there or I get angry. This is all after the bleed. I had a rentacar the other day. And immediately after getting in, I rearrange everything to where it "lives" in my home car. Things must live in their place!!!I have some fear of losing things. My mind cannot remember where i put it. So i always put it one place only. When parking the car I always park in same spot. Each place i go has one spot. Or else i will never find the car. 4)I am more adhd now. So say my coworkers. "we have to keep you on track" they say. 5)my emotions go up and down. This is a tough one, because I do stupid things and people blame me. I think the emotion center of my brain was damaged. This causes me trouble because noone wants a doctor with emotion issues, right?? 6)I meet people, then remeet them. Funny. 7)I repeat myself a lot. This annoys people. They tell me all the time. "you already told me that". I get that a lot. (just reading this post, i noticed i have repeated the "learning spanish" thing 4 x already, jeeeeesh!) 8)My short term memory is TERRIBLE. What were we talking about??? Just kidding. But seriously, if i am in a restaurant and get up to grab a fork, half way there I have no idea what I went there for. So I say to myself "fork,fork , fork, fork" and then the person near me says "what did you say??" And i say "fork". And they say "why are you saying fork?" It is daily comedy in my life. 9)I have eliminated toxic people from my life. Another gift of this experience. I used to be polite to them out of politeness. No longer. They have been deleted. I also remember , very clearly, who came out of the woodwork to help me through this crazy ordeal, and I remember very clearly who abandoned me and pretty much left me to die. My deficits are comical to me. They show something of how the mind works. I can memorize the past preterite tense of spanish of an irregular verb, BUT cannot remember where the car is! I have strengthened my relationship God thru this ordeal and thank Him every day for my recovery and new life!! I am probably more glad that im not paralyzed then dead. I was very lucky to be alive, not paralyzed, back to work. So you will never hear me complain about my deficits. To me, they are comedy. I thank God every day for my new life!
  8. 8 points
    Many thanks for everyone's response. It is simply so difficult to slow down! I guess it might be true that many SAH patients are type A people. 😉 However, I am struck by a comment from my ophthalmologist this week - you do know you are lucky to be alive, right?! It came as a timely reminder for me, though I am still easily distracted by apparent and physical recovery. On the other hand, my head spins from automatically planning for the next day/week/month/year before bed...😓 I recall someone on BTG said the invisible injuries and problems post SAH makes them that much more difficult to explain to others. How I wished we could all see the bruises and damages inside, if only to remind ourselves that this is an ongoing process!
  9. 8 points
    Exactly one year to the day when my world changed but I made it. Had my yearly check up and the doctor says the coiling has impacted and that there is a balloon developing at the base, so they will be having me back in within two months to repack the coiling and fit a stent and also consider what to do, if anything, about two other small aneurysms on the right side, but they haven't increased in size since April so that's up to the team to decide. My short term memory seems to have improved in the last few months, I find keeping a diary helps, not just of what I've done but how I am feeling, depressed, confused or happy. I try to do brain games on the iPad, find the word, join the letters, solitaire etc. I get really nervous going into busy places, my self confidence has really taken a knock, must have somebody with me otherwise it's like brain says enough is enough, too much information so get me out of here. But, and it's an important but, I'm still me inside. Hope you all had a wonderful Christmas and hope we all have a wonderful next year.
  10. 8 points
    It's my 13th SAH annie today ... Life has got better and better, so I hope that it gives you guys hope that healing continues for many, many years! Eric took the day off and we went to Sherborne for a lovely Italian lunch and a glass of wine.... Sherborne is quite hilly and in my early years I found it very difficult walking etc and it took every bit of energy I had. I haven't been back to visit for some years, but today....I managed it solo, not much hand holding and made it up and down and around! Today, is a good reminder that for each and every one of those 13 years, I've experienced more and more recovery ... Never be told that when you get to 2 years post SAH that you will experience little recovery and that the majority of your recovery will be experienced in those first two years. That's not true in my experience...and in fact, I believe that my physical and mental wellbeing, started at 2 years post SAH. I was 2 years into my recovery, when I understood what had happened to me and accepted that life was going to be very different and my new normal, wasn't going to be the same as my normal before the brain injury. So, I decided to be kinder to myself and compare myself to the person who left hospital in a wheelchair, rather than the person I was before. It took me a long while to figure that one out! What I'm trying to say is, never give up .... keep pushing forward with those baby steps and even though you may not always succeed, it's better to try and fail, rather than not trying at all. All of those littles successes add up and start to bring a sense of normality back to your life.... For me, it's been slow but sure, plus I have to factor in that I'm another 13 years older, so my body and brain is not always going to do, what it should! 13 years and still alive and kicking and it's been a perfect day! Keep on keeping on guys! xx
  11. 7 points
    I will be nine years into my recovery this Friday 9th November. Life isn’t the same but I’m so grateful to still be here and still able to work at 61, all be it only three days a week.
  12. 7 points
    Hey there hun Firstly there is a distinct difference between being frustrated with someone and treating them like a child and they need to know this. Also they need to have more patience with you rather than making you feel like you're frustrating them. If there are things you need to remember, write them down on post it notes and put them in a prominent place so that you can see them. If you have appointments get a wall calendar and also put them in your phone with an alert to go off with plenty of time before so that you don't miss them. At the end of the day you are, quite literally, the injured party and they need to adopt patience so that they don't make you feel like they're treating you like a child. By the same token, you need to remember that they are not treating you like a child, they are trying to help - and at times this is going to frustrating for you all. Patience and understanding all round is the ticket xx
  13. 7 points
    Thank you everyone for your advice. You have really shown how this forum is a warm and supportive community. Over the past weekend I have tried going out of the house for longer and having dinner with a group. Must say what would have been an easy and relaxing break in the past gave me headaches and insomnia! I have also tried glancing through work emails just now. An hour of it without actually working on them already makes my head spin quite literally. Suppose there is no denying I am still not where I would like to be recovery-wise. I will probably tell my neurologist next week and try to ask for an extended sick leave. Many thanks again for your support. Hope I will have better news to share next time! Meanwhile, good wishes to all who are working their way through post SAH here.
  14. 7 points
    The amazing news that my full driving licence was mine again was emailed to me at 6.15am today from a very efficient and helpful member of the DVLA team!!!! Contacted my insurance company and just as you said, I had my insurance reinstated free of charge immediately. Needless to say I have already been out for a couple of short local drives and the sense of freedom is indescribable!!!! Thank you to all of you on this forum for the advice and support- I will never forget it. Dave ( Finollie)
  15. 7 points
    Thanks for all the good wishes, the site kept me sane in the early days. Loads of good advice. For someone who had never heard of a subarachnoid haemorrhage before getting one it was comforting to know it could happen to anyone. To everyone who is in their first year keep your spirits up there is a future.
  16. 7 points
    Hello everyone! This week is always one of the toughest of the year. So many thoughts, feelings, memories- nothing easy at all. I am grateful to be here, writing about my experiences, gaining support, and giving as much as I can to others. Nine Years- I still go back to the spot where it happened. It is still unbelievable how much has changed, and how much still remains as a part of the experience. I do hope that, to any of you that are new to this journey, or to those who have been recovering longer than I have, things move on. A new normal can be achieved. You will learn a lot- especially how to lean on your support system. Some of you will find that you are not good at utilizing that support system. Regardless, this time on our little blue marble is precious, find gratitude, and center yourself in the knowledge that you are still here, and have so much to give. Thinking of you all.... Noah
  17. 7 points
    Thank you. Mum had her skull reopened yesterday and part of her skull taken away- she’s on IV abx and back confused but seems good in herself she’s walking to bathroom and chatting away bless her. Thanks again xx
  18. 7 points
    Hi Mandy, Welcome to BTG. I struggled with this kind of issue early on in my recovery. I had to sit down and reappraise who I was and what I was doing if my life was to become bearable again. It was something somebody said to me off the cuff about life being full of opportunities. Somehow it kind of resonated with me and I thought long and hard about that sentence. I thought about how I was before, how I am after, and lastly how I can learn to live with this sudden change that has been thrust upon me without any warning. Usually change happens gradually as you get older and you seamlessly learn to accept it. In this case the change happened in an instant. The first thing to do is to learn that this event happened, and much as we would like to, we can't turn back the clock. So look forwards and think' how can I be the best that I can be?' Be honest with yourself, and accept what has happened and learn some coping strategies that help you deal with it. There are numerous strategies, some will play a greater part than others, but that depends on your own circumstances and how you feel about them yourself. If you try one and it isn't working, change it for another, be flexible. For instance, if someone annoys you, avoid them, or sit them down and explain to them what has happened to you so they may adjust their behaviour, rather than you always having to adjust yours. If you work and your job is stressful, change it, or reduce your hours or delegate the work to others. Sit your husband down in a good moment and have a heart to heart with him. He may not fully appreciate what you are going through. Show him this thread if you like so he can gain some understanding that you are not kidding and that there are others just like you to whom this has happened. The problems won't go away unless you confront them, one by one if necessary, when you are up to it. If you don't change something then matters won't improve. What's the old saying? "If you always do what you always did, you'll always get what you always got" That's the same answer! One of the biggest problems is usually from lack of communication - and thus lack of understanding. When people understand, they change their behaviours and usually try to do their best to be helpful. If they don't then maybe they are not the best people to have around you in your life. No one is saying this is easy, but it can be done to a lesser or greater degree and it doesn't happen overnight, but I am living proof that you can learn to live with these kinds of issues, with patience, perseverance and support from those closest to you. But you have to let them in by talking through your problems with them. Don't lock them out because these are the same people who can help you climb the ladder back to an acceptable and quality life again. I am nearly eight years out and my life now is much better than in the early days. I find it is as much about the way you think about things than about what you actually do. Try and turn negatives into positives. When something happens think about the opposite. You can still achieve things, maybe not as quickly but if you walk rather than run, you still get there in the end! Good luck, let us know how you are getting on, and if you can't talk to those near you then talk to us, but talk, don't bottle it all up. All those emotions of yours are natural, there's nothing to beat yourself up about. Most of us have had them and we continue to do but accepting the the event happened goes a long way to starting to find solutions that work for you.
  19. 6 points
    Iola, it’s good to hear from you. I’m sorry work is troubling you. I retired the year before my episode so got a bye on the return to work experience. I think if there is anything good that comes from experiencing what we have it’s discovering what and who is actually important. You have come far and done very well. You should be proud of yourself.
  20. 6 points
    Hello all, I am over the six year hump and sliding to 10 years. My five year was such a feeling of "finally" that I decided I'd turn over a new leaf with a new attitude and that lasted for five minutes or maybe five days, I can't remember!! Last winter was rainy, cold, and work was so stressful and the headaches were terrible. It's a wierd headache. Pain? Yes. But, something more than that. A feeling like my head is in a fishbowl with a vice wrapped around it. I had a few dizzy spells and I don't freak out like I used to but I do feel my body getting very hot. Maybe a hot flash as I am 53 now. Good grief. I think it's too little sleep and too much stress and I do know when my body says enough, although, I choose to ignore it sometimes. I am trying to make changes and I am going part-time soon. Really! After a life changing experience we all want to get back to normal and that just does not happen. I'm tired. Tired of headaches, tired of not getting on rides at parks, tired of always feeling weird, tired of the corporate bs, tired of trying to be as fast as I used to be, and tired of trying so hard. I love my team but do not care for the power players and I wonder why I even try? I've always been a helper but I do not seem to be helping myself. I think I'm at a crossroads and it is so hard to let go of what you worked so hard to get back to only to find you don't like it there anymore. I'm rambling. I dunno, just thinking out loud this evening. Thanks for listening. "i"
  21. 6 points
    Hi everyone, Today marks my 4 year NASAH anniversary! March 28, 2015, just two days after my 40th birthday, I experienced 'the headache'. I knew something was wrong within minutes and had my first ambulance ride to our local hospital. They thought I had an aneurysm so they rushed me to the trauma hospital the next city over. A few hours later a neurologist told me I had blood on the brain. He never used the term SAH, NASAH or stroke, just blood on the brain. When I was discharged days later, I asked, what happened to me? What is this called so I know my medical history? I had never heard of SAH until it happened to me. I was off work for 2 months and it was absolutely the worst months of my life. I couldn't work, drive, read, watch TV, think straight, cough or sneeze. My body was just still. It was afraid of what a jolt might do. With family support, meditation and just taking things day by day, things did get better. Four years later, I'm doing well. I celebrated my 44th birthday a couple of days ago, no ambulance ride or ICU This is progress. I'm still scared it's going to happen again, I'm afraid the next time it may be worse. But I don't want to live in fear. I want to live each day the best I can. Whatever happens to me, will happen to me whether I worry about it or not, so I try not to overthink. My SAH is a mystery to this day. No cause determined. I suppose not everything in life has an explanation. Thank you to BTG. I do check in and read the articles, your stories and it's comforting to know we are not alone. Cheers from Burlington, Ontario - Canada! Alison
  22. 6 points
    Thank you for all your nice comments and well wishes! I now consider myself not only a survivor but my head is now a barometer. My head throbs when I'm stressed or feeling anxiety ... about anything - life, work, etc. I swear I can feel the exact vein pulse that bled 4 years ago, when I'm feeling tension. It reminds me to stop, breathe and relax. I can't stand the wind, it makes my ears hurt and feel full for hours. I wear a hat when I go walking. My eyesight has changed. I've always had glasses but now my eyes are worse, new script each year and my eyes get heavy and tired quickly. Not the easiest thing to manage when I'm trying to work on my computer all day. I find in general my energy level is less. I need rest more often and 8+ hours every night. Although I enjoy exercise, especially outdoors, I'm always thinking about my pressure - my blood pressure, my head pressure. When I'm sick with the cold or flu, I can't take anything. 4 years ago I had the flu and when I had the SAH, I was on 3 meds for sinus and chest infections. I'm now blacklisted from many medications as they affect pressure/veins and arteries too much. I know I'm lucky. I didn't need surgery, I'm no longer monitored by my neurologist and my life for the most part, has returned to normal. I'm grateful everyday. Last thought: When I went for my last MRI follow up with the neurologist and again I asked him about it happening again and why did this happen? He told me ... we don't have an explanation, sometimes things in life just have to blow up every once in awhile and then he showed me his wall of patient files, thousands of them and he said, most of these people I will never see again. It's a once in a lifetime occurrence and I think you are part of this wall.
  23. 6 points
    I’m with Weedra , grumpiness is a great sign for me. In fact my kids are best at saying to me ‘mum are you ok, you’re really grumpy’ , if I hear that I know my fatigue is notched up at Amber levels and I need to rest. If I don’t I’ll push through a red and that’s not pretty, I then have some pretty awful reactions where it’s like the brain throws a temper tantrum with me....I try not to run a red light anymore, but did early on and was left reeling. first I think the slower pace you have to adopt, are forced into after our events is not laziness. It’s the best pace you can manage at the time but because we were all travelling at 70 mph through life it’s like suddenly finding yourself sat in roadworks and contra-lane. You have no choice but have to slow. You have to stop when required. It’s all part of going forward. Be kind to yourself right now, the more time you take the better it will be down the road. Everyday fatigue for me is my normal. I can get a good nights sleep but still wake up tired so know every action each day is a bit of a horse trading game with my energy bank. What can I do, what do I need to drop if I do that, when can I get rest time, the internal conversation is just my natural state now. And I do loads now compared to post SAH. But I do everything more consciously and with consideration, I don’t rush and I don’t multi task...I am a skilled uni tasker who has little pauses afterwards. The best analogy is that of a battery pack. We damaged our charger, it probably can never charge back to its out of the box state, so you need to spend it wisely and know the capacity . the level of energy we can hold is unique to us as individuals. Some people will get back to being able to do everything in time but probably differently. Others won’t , time will tell you that but tiredness in the first twelve months is the brain telling you it needs some pause. You can’t see the bruising, the hurt , the damage...but it’s there. Let it heal .
  24. 6 points
    On this day 2 years ago, I had my “episode “ as I refer to it. Lol! I am feeling great, I am working, albeit in a different capacity and much less hours, but I decided a while ago that I need to do what is right for me! I have had wonderful support from friends and family. Having said all that, I still am not 100% of my old self. I still deal with fatigue, fuzzy head, anxiety and depression. This site has been a god send to me. Let me take this opportunity to say Thank You to all of you. We have all come out the other side of this, and for that I am thankful♥️ Hugs, Pat
  25. 6 points
    Hi all. Just want to say hello and say a little about my sah. Really not sure where to start, we retired to turkey 8 years ago and were in uk for Christmas last year, I don't really remember much at all of the few weeks leading up to Christmas but remember arriving at the hotel at Stanstead ready to fly home the next morning, walking into the lobby when it felt like someone had shot a rocket into my head. The nhs really did me proud and I was discharged early January after having a coil fitted. Couldn't fly home for 10 weeks and the take off and landing was so scary. After 11 months, I have really bad short term memory, when I get tired, I get stressed and confused and start stuttering. I write lists to remind myself of what I need to do for the coming week, and a diary to remind myself of what I did last week. I'm so glad my partner found your website. Reading some of the stories made me pluck up courage to ask him to write this. I couldn't write this much without forgetting where I was. Thanks for reading my story.
  26. 6 points
    Hello again everyone, back again around the anniversary of my NASAH, Non aneurysmal (Perimesencephalic) subarachnoid haemorrhage. Mostly good, practically 100%. The heightened sensitivity to high pitch noises persists but far less than before. Fewer and fewer headaches or warning of them. Stress is definitely a factor, for sure. Hope everyone else's journey carries on bringing more and more positive things.
  27. 6 points
    On this day in 2016 I had my stroke. Well, a headache actually which I was told was a stroke. A bit of vision loss and perhaps some memory obfuscation but otherwise I am all good. In a few days time I shall also have been tobacco free for two years. Yesterday I had been driving again for 4 months. I love it! Fuel costs are hitting me hard but I am not ready to go electric, despite the amazing torque those machines have! Internal combustion engine all the way for me! And a bon journee to you all.
  28. 6 points
    Win, I think that I was still doolally when my kids thought that this site was a good idea at 12 months post SAH! Little did I realise, that it would still be running in 2018! Think that I would have run a mile to be honest! It's been run on a wing and a prayer and when I was still recovering myself and still going through all of the issues that I see from members now. It's been a combination of good, sometimes not so good lol and steep learning curves with running the site... but it's been great therapy for me, to see how each of us, have passed on our own experiences, info, support and love for our fellow SAH'ers and their carers and family. That's why I continue with it. xx
  29. 6 points
    My wife (37) had SAH about 6 months ago. It was a severe bleed from large aneurysm. She collapsed in a car-park, comatosed by the time Ambulance crew arrived and intubated/ventilated on arrival in A&E. I had spoken to her 15mins before she collapsed and everything was fine. I didn’t find out for another hour as I had left my phone in the car. She was ventilated in A&E, right beneath my feet, in the hospital that I work and I had no idea. We have 4 children. Two boys - 5 and 3yrs and twins, now 8 months. The twins were 3 months when my wife collapsed. She had just loaded them into the buggy before she had the bleed. The police took them to a travel agents as they couldn’t find anyone to collect them. The boys were picked up by a school friends Mum. The whole thing, everything, was just completely and utterly heartbreakingly horrendous. I wouldn’t wish that sort of day on anybody. It was torture. They transferred her to Neuro-ICU and basically informed me they would support as long as there were signs of improvement, they couldn’t say how things would pan out. Surgery wasn’t an option given the site of the aneurysm and they would only coil if things got better. I cried myself asleep and cried myself awake for 10 nights in a row. In-between that I sat by my wife’s side and prayed to everything and anything. I then drove home to have some dinner, give the kids a bath and put them to bed. A combination or her family and mine filled in for childcare. The twins had an abrupt start to bottle feeding caringly administered by my parents. She did improve (opened eyes to pain), so they coiled the aneurysm at 24hrs. That really was awesome. Then came the vasospasm - the amount of blood made this almost inevitable. All hopes raised with subtle improvements were dashed by Day 5 with a sudden drop in conscious state. With all the drugs pumping at quadruple strength to push her heart and circulation to the brain to the max, her heart started to fail. She had aspirated (inhaled) vomit when she collapsed, so one lung was already out of business. Repeat brain scans showed widespread focal ischaemia (brain with poor blood supply) but no infarct (dead/dying brain tissue). Nothing was going right, absolutely nothing. We hadn’t been getting on before she collapsed. Standard stuff for parents with 4 children I’d imagine. A rather stressful life and little time for each other. We argued lots. She sent me an email a week or so before, wanting to know if anything was wrong, pleading with me to talk to her so we could find a solution. I ignored it. As I was sitting in intensive care I realised what I had done. The regret was unbearable. I just wanted a moment of consciousness, just a moment, so I could talk and she could hear and I could say sorry. So I could reassure her, tell her I love you. I then thought about how that would be just for me and how selfish I was for thinking that way. Her brother sent me a message on Day 10 - “Miracles can happen”. I pulled myself together, told the kids Mummy was going to get better and come home and went back to her. Over the previous few days I had received literally hundreds of messages sending love and prayers. There was a lot of love being sent her way, so I decided I’d have to channel all to her. I sat resting my head on her right hand and thought of anyone and everyone that she knew - the kids, the family, her friends, acquaintances and everyone that had been in touch. I imagined them one by one, said their names to myself and whilst doing so pushed as much positive energy my spirit could muster towards her. That might sound ridiculous (I am a doctor and a scientist so it does to me) but it was strangely comforting. Here’s the thing: Miracles can happen, they really can! If you are reading this in a similar position to me - Please believe this. It’s an extraordinary paradox - most of the time we are completely unaware of our human bodies treacherously fragile existence, but at the same time we are blessed with an innate biological toughness and resilience that makes the extraordinary and miraculous possible. From that day onwards my wife got better and better and better. One day later she was opening her eyes spontaneously, the next moving one side, the next moving all limbs on command. By day 14 she was off the ventilator and moved to HDU. By day 18 she was moved to a standard ward, talking but dysphasic (jumbled up words). By day 21 she was walking to her toilet, on a standard diet and talking normally. By day 25 I took all the kids to see her. That was a special moment. She hadn’t remembered we had had twins, so at least we found something to laugh about. In the space of 2 weeks it seemed like all my prayers had been answered. I was so thankful to everyone, her carers, family, friends, to her especially. I don’t think I’ll ever be the same person. My family and friends have been great but outside that circle the support has been non-existent. I’ve gone from being a husband, to being a carer and now trying to get back to being a husband again - this isn’t good for relationships or state of mind. Life doesn’t get easier. Home is difficult and so complicated and noisy. It’s hectic all the time. As a result she is always tired. Struggling to manage fatigue in a household with 4 young children, it’s not easy. She feels like she has lost so much - her identity, her purpose in life. She is depressed and lonely. I am lonely. She doesn’t feel like she can cope and after an extended period off work I’ve got to get back to work. She needs support which I can’t always give her. She needs reassurance from somebody who has been through this and come out the other side. It’s hard for me so I can’t imagine how hard everything must be for her. Despite this I do feel that there are positive things we can take away. I am ashamed to say its only now that I have a thorough appreciation of how difficult it is looking after 4 children. We have had nearly 6 months together now, we would never have had that time otherwise. It’s been difficult, but I think it’s made us closer. I’ve had time looking after the babies that I didn’t get with the other two, it’s been special. They said it would be a rollercoaster at the start. It was and it still is. I know it’s all relatively early days. I know how lucky we are to have such an amazingly strong women for a wife/mother , she really is amazing. I’ve always had hope but after all the progress and everything she has grasped back from the brink it feels like that’s the one thing my wife is still searching for and I’m not sure there is anything I can do to help. Thanks for reading.
  30. 6 points
    3 years ago today at 1am I had my SAH. Sharing experiences and everyday news on here really does make me feel part of a wonderful community! I may never meet any of you but thank you none the less!
  31. 6 points
    Good evening and welcome to this lovely site, First I want to commend you for your strong spirit and being so supportive. I always tell people that in some ways, the early days of the SAH was harder on my husband than on me. Despite a pretty serious bleed and a craniotomy two months later to fix a second aneurysm, I recovered pretty quickly. I do not have children, but I was back to work full time after three months. That said, I never have had the same level of energy and stamina that I had before the bleed. ten years later and I'm having one of those weeks where I've "hit the wall" and the least discord makes my brain hurt. And even though I've been told the chance of a bleed happening again is slim to none, I still have to deal with a certain amount of fear when my head hurts.. You mention that you' d be surprized if your wife had any "remarkable" cognitive changes. That sentiment is pretty common when one isn't bearing physical scars and is operating at a high functional level. A common directive from medical staff is to "go live your life" because after all, we are just so blessed to be here and able to walk and talk at the same time.. But as my current neurologist tells me, no one gets away free. Where there is brain bleeding there is brain damaged and that part of the brain had a function, whether it's controlling fear or anger or joy or memory or expression or attention span. And whatever that impairment may be, it's worse whenever the fatigue hits. Please continue to urge your wife to have an assessment so the best path forward can be planned for her. I stubbornly waited years before I sought help. Things still aren't perfect, but they are better. Just knowing I wasn't imagining the changes helped immensely. i can also say that I read posts on this site for a long time before I posted myself, so if your wife isn't comfortable with the idea of conversing yet that is understandable. I do hope she'll read though, to see that whatever she's experiencing isn't unusual for what she's been through and she isn't alone. Our hearts go out to you as you adjust to this new normal and we all hope you both find help and comfort here. Colleen
  32. 6 points
    I have never flown since having a Subarachnoid Haemorrhage before that we’d been abroad & I can’t say I enjoyed flying I didn’t, then last year we got invited to my cousin Craig and Cecilia wedding in Alicante, Spain they were flying from Australia and I thought well technically although it’s a 3hours flight for us we ARE nearer, others are flying from Aussie. I had no idea how I was going to be on the flight ‘head-wise’ would there be a problem Ronnie found out how to come back via car and train it would take 3days didn’t fancy that so I’d give flying a go. Few weeks before going I found out via Behind the gray thanks to Daffodil about Airport Assistance not just wheelchair but you can ask for a Lanyard for around your neck or a button/pin and the airport staff know when seeing it that you have a hidden disability (yay! That’s for me) Now I can only speak about Edinburgh but trying to get them on the phone ‘nightmare’ so Emailed them asked about it told them I didn’t require a wheelchair but did have a hidden disability I also walked with a crutch, so could I pick up a lanyard when I got to the airport gave date and time also flight number. The reply was: Thanks for contacting us, I am delighted to see you are travelling with us in June, With regards to your query, if you only need to ensure your crutch is with you on your flight I am happy to advise you that no arrangements are needed. However, if you require any assistance, please contact our special assistant team Did I ask about the crutch, NO ,did we try again to contact their special assistant team, YES but with no luck. Anyway Edinburgh Airport was a bit of a disaster (cattle market springs to mind) going through security but didn’t let it worry me too much I never got time to tell them about my shunt or replacement elbow joint just got put through the full body scanner and have to say head did react to that a bit (maybe it was just because I was thinking about it) we went for something to eat and have to say felt better. At the gate man asked if there was people with young children or elderly Ronnie’s hand shot up he went to speak to the man and we were whisked right through and first on the plane may as well get a perk somewhere. On the flight out I was at the window, and there was a problem in France so pilot kept having to change direction at first my tube didn’t like it and I thought OMG! What the hell have I done but that only lasted a few minutes and it was fine. At Alicante airport on the way home we were there early just how it worked out not intentional but they couldn’t have been nicer got asked on seeing crutch did I require assistance – at security it was only a hand/wand scan so that was fine. But I did point to my elbow saying replacement joint didn’t try to explain about shunt and tube in head (should have asked Cecelia Spanish for those two words replacement joint, shunt) if I had to Android translator God bless Android all I can say. On the way back sat in the middle seat let Ronnie get the window seat and put the sea-bands on my wrist they are for bad travellers it was much better. Back at Edinburgh Passport security the electronic one girl was firing out instructions on how to place your passport on the scan, (ok not done this) Ronnie tried to show me she didn’t like it so I asked her again to explain she told me so quickly so I explained why I was slow, she didn’t slow down however Ronnie was holding up his (he’d gone through by now) and showing me, now why couldn’t she have done that. So I conquered my fear faced it head on took on the challenge. And got to the wedding it was amazing not like a wedding I’d been to well church/chapel, meal after but at night we went to a tapas bar at the marina sunset glisting on the water huge boats all stunning, met up with Craig and Cecelia (bride & groom) on the Sat for dinner, went sightseeing on the Sunday with them then on the Monday met up with them at night yep not your typical sort of thing. All in all had the most amazing time, and experiences at the airport they happen. On the family front we were the only two from my family (Craig Dad’s side) all the rest from Elma’s (his Mum’s side) it was so nice to spend time with family that actually want to spend time with me, the last few years have been very trying to say the least apart from visiting my Uncle Bud & Auntie Lynn in their home and now the care home they are in this was the first time in well over 2years that I have spent time with any family and it was lovely to feel loved and wanted.
  33. 6 points
    Daffodil!!!! you are wonderful as always. Daffodil, you helped me immensely during my recovery. I cannot thank you enough. I see that a few people have had recent bleeds and going thru tough times. I highly recommend you all look up her old posts because her explanations of things are wonderful. They helped me immensely when I was struggling. You are an Angel.
  34. 6 points
    June 10th marked my 8 years and what a time.... for the first time in 8 years I if not even think about it until I went to bed that night. Too busy having a good, the good weather meant family bbq and water fights. Still progressing massively at times and progress slow at other times. I have currently been living alone and mostly independently for 4 years. and have just passed the 1 year mark of returning to my much loved pre sah career of nursing which is amazing in itself. After trying for really long time and too many interviews to count i finally found a clinically based job that was suitable and a manager seeing my still current and relevant skill set and willing to take a chance on me.
  35. 6 points
    Miss J. I get it I really do. I actually was signed off work for over a year post my bleed and ops but yes I wanted to get back to work, I enjoyed the purpose of it and was still curious about what was possible plus I felt I had something to still bring. Plus on top of that I was only 39 and had a mortgage to pay. i know you are coming from a slightly different place but you have to realise that for now at least you have a new level of limits and I think maybe you pushed too hard too soon, that said if you work in sport then that’s not surprising as it’s the factor that works to make athletes successful but here’s the thing, with a brain injury you have to give it space to heal. It’s exercising away constantly, working unseen, it’s running the entire body shop using energy but it also needs to heal from the blood assault it has had. That means time to shut down, pauses between doing things. I guess what i wanted to share is that 6 years on I still have curiously , drive and ambition but know that I have different limits and capacity to what I did pre bleed. I personally found I just can’t work at the same rate or frequency I did back then, ( and probably never will) my brain just doesnt allow it. The thing that I know helped me is I built things back up slow and got to where I am now and honestly can tell you I am just as capable if not more than before BUT I don’t have the same motor capacity nor ask as much of myself. I note my traffic lights and if it’s red I stop...most of the time. Rest is part of my landscape and I enjoy the view more for those pauses that I build in. So I think what everyone who replied is saying is ‘slow it down’ . Your survived something potentially life changing, life ending and it will serve you well to invest in a change of pace for now and who knows you might enjoy what that brings. I wish you well.
  36. 5 points
    Hi Crazy, huge congratulations on the marathon, I feel your pride! Your post sounds very like my journey. I too am a runner, was actually running when I had my bleed. When I went back to it 4 months after my NASAH people kept asking " why are you running?" " doesn't it worry you that it will happen again?" My longest run is nowhere as far as yours, my challenge was the Great South which is 10 miles. I completed it 18 months after my bleed and wept when I crossed the finish line. Running has been my saviour. When I am stressed I run, it's the one thing I don't need to tax my brain doing - just my feet and legs! I run with a group and we all run and chat - so we aren't going to win any races. We all say running is for our mental health and the fact it helps with physical health at the same time is an added bonus. I too struggle sometimes, even 4 years down the line I am still accepting what has happened to me and how it has changed my life. But as you say the little victories are the sweetest and bring the most happiness. I hope yours continue and that you manage many more marathons. Clare xx
  37. 5 points
    Hi, I will give you a slightly different look from the outside at what you have written, laced with a little irreverence, humour and a lot of love! Your credits, not your deficits, your positive changes and increased sense of who you now are, thanks to your nurses and your reflection! I take your points one at a time in the order you made them! 1) Your perception has changed and made you reflect on what is important in life - well done, you made the right choices with regards to work life balance, 2) Keep trying the salsa steps, it will sink in when you are in the right mood and frame of mind - get to work in parrallel with someone who knows the steps and do them at a slower pace until it sticks. Instead of Salsa steps call them Spanish steps - if Spanish is going in call them Spanish! Worth a try! 3) This is part of your brain telling you it recognises things in their familiar place. If it works for you then keep doing it! Your parking space can be called the Spanish spot! 4) This is good - you have their attention! 5) These emotions display a level of honesty, just be mindful that perhaps a little more tact is called for, not a change of opinion. People often blame others when they want to deflect fault from their own actions to yours. They know your weak spot - do you know theirs? 6) We all do that, it's just you are more aware of it now. You remember the important ones but not the ones that are less significant to you. You can't remember everyone, don't beat yourself up about it. If needs be, write their names down and why you need to remember them. If there's no reason, then there's no point to remembering them - therefore no worries so go back to point 1 - laidback! 7)Nothing wrong with that - repetition transfers short term to long term memory thus eradicating the problem at issue! Great! Laugh - because it's a comedy - it's good to laugh! 9) Another good point - why keep up with toxics - getting rid was a good decision - well done! 10) With regards to your Spanish again - buy a Spanish car and then maybe you'll remember where you left it - (in Spanish of course!) Lateral thinking! What's Spanish for "Credits not Deficits?" It's just a different way - and hopefully more positive way of looking at things! Good luck Macca
  38. 5 points
    I showed this to my wife. It does a great job of explaining why I “check out” sometimes. I just tell her I’m feeling stupid. Sometimes I think I maybe shouldn’t have fired my nuerologist.
  39. 5 points
    Thank you both for all of your kind words and comments! It’s great to hear your advise, and I will definitely take a look at the threads you recommend and show them to family. I have been drinking as much as I can, usually trying to hit a 2ltr a day target. I have also notified DVLA who have contacted the hospital and received info from them, I’m just waiting for them to make their final decision... but who knows how long that will be! With regard to my SAH itself, the reason for the stent was because I had a deformed artery with four anyerisms off of it, and one had bled, but they had to stop the other three from doing the same. Very scary, and absolutely no warning! On the plus side, my recovery is going very well. I just need to learn to rest and not push myself too much, which is hard when you’re not good at sitting still and like your independence. Happy days! Good luck to you too with your ongoing recovery. Kind regards Sophie
  40. 5 points
    For me it is like a brain fog when I can't think on my feet, take extra time to answer questions when someone's talking to me. Almost like the words are hidden. The other sign for me is grumpiness! When I loose my cool because I can't think straight, I get sent to my bed like a kid!! Half-hour eyes shut is usually enough to reset.
  41. 5 points
    Hi Everyone, Been following the site for some time and very grateful to read the stories of fellow survivors. Time to share. My SAH (anterior communicating artery) was just over four years ago and was coiled within hours (not even a stitch in my groin - how does that work?). Phase-returned to work in a busy office after six months and reached full-time after eight. Despite adjustments to my working day and an employer who tried to understand my challenges, I struggled to keep pace, concentration and accuracy and my confidence was shot to pieces. I was lucky enough to get early retirement on ill-health grounds close to my fourth SAH anniversary. Now in retirement I'm volunteering two part-days a week and the new post-"bang" me is very comfortable with revised daily routines. Ongoing challenges include a constant (fortunately) low-level headache. Luckily I can just live with it as paracetamol doesn't touch it! Feels like my brain is being pulled downwards and is definitely worse if I haven't taken on enough liquid. I do get fatigued and often take a nap in the afternoon or early evening. Short term memory is not strong and I often start chores, get distracted and forget what I was doing. I can still recall details from all the FA Cup Finals in the '70s though, so that's ok! Pre-"bang" attributes (unfortunate tendencies toward grumpiness, unwarranted anxiousness and worry, struggling to remember names and numbers) are all enhanced, though I guess this happens with age, anyway. Still struggle to focus in busy places and completely unable to do more than one thing at a time (the pause button is in constant use if the family are seeking my attention during The Big Bang!). Great site, hope other new members are encouraged to share their experiences.
  42. 5 points
    Hi Clive, Mine was over eight years ago and was my left anterior communicating artery. I was coiled too. I recognise much of what you say and I too can remember old footy results but can't remember today's or last weeks! welcome to the club! Frustrating at times, I know. However, you survived and things get better. Mine happened at 54 and I retired four years later and haven't so much as looked back once. Enjoy your retirement. Just remember when you are next out in the sunshine having lunch, your ex colleagues are inside, toiling away, stressed and complaining about being overworked and underpaid! There are some things and people I miss, but I definitely don't miss some management colleagues and the stress I was under, often unnecessarily, because of others incompetence and intransigence. Hey - enjoy life, you got a second chance, make the most of it! You are learning to change things around a bit and eventually you will settle into the new normal for you. Glad to have you on board! Macca
  43. 5 points
    Clive, Our stories are similar except I retired early (59) and had my “bang” at 62. I didn’t have to transition back to full time work. Sure changed my plans though. I am 67 now and have adjusted to my deficits pretty well. I’m not friends with them, but may as well learn to tolerate them.
  44. 5 points
    Thank you all so much for taking the time to read my little story, it’s so nice realizing that there are people who understand what I’m going through, I’m sure because I look the same on the outside people who don’t know me well don’t realize the changes that have happened on the inside. Trying not to get too stressed about the procedure, the worst part is the waiting and the what if? Thank you all for being there. Xxxx
  45. 5 points
    Hi Charlie. I know how you feel, and I gather everyone can understand how you feel because we have all been there! The advice you will get here is a soothing balm to your mind ( it did wonders for me). I found that at 5 months out, I still couldn’t work my regular hours ( I am a preschool teacher). What I learned is that it takes a long time for the brain to heal. You will get stronger, but you need to be patient with yourself. Know that it is normal to feel anxious. I tend to feel more anxious close to the anniversary date of my bleed (2 years on the 28th of this month). I had to change my job as I found the classroom too stressful, and that was difficult after 30 years - but I am so much happier now, Different can be good too ? You are still healing, and learning your new normal. I am pretty much back to my old self, but I know that there are times when the fatigue and fuzzy head will creep up on me, and that is fine too. I just rest that day and if I need to nap then I do! I found visiting this community has helped tremendously. I am sure you will discover this too. Good luck in your continued recovery!
  46. 5 points
    After such an attack on the very core of your being (for that is what your brain is), a few weeks is nothing in terms of recovery and you will see from reading all the different subjects on here, that recovery is a long, slow process. You can't just get up and carry on as though nothing has happened. It just doesn't work like that. What you need more than anything is time. Time for your brain and your body to heal. Time for you to assess and make changes to your lifestyle to accommodate the 'new you.' This event has happened and you can't turn back the clock. But you can shape your future. You are right to isolate the feeling of being 'dumped.' Most doctors have not themselves experienced a SAH, but they know what they have or haven't read. However, they haven't 'lived it' like we (and you) have. The doctor's role is clinical, not social, and that is where other agencies should have a role, but often don't, and the reasons often boil down to who is going to pay for it. Probably worse in the US than in the UK, but the existence of this site is an example of the paucity of support post SAH anywhere. The brain injury you have suffered isn't visible and now that you are back up on your feet, others think you are back to normal. But you aren't. Probably, to a clinician, you appear to be ok and all the wires are in the right place and that's why they think you are ok. But there is much more to it than that. There are outside factors such as emotions, headaches, fatigue, families who care, but without the understanding of the consequences of what has happened to them and to you. So you have to tell them. You need to talk to people, to communicate to them that things aren't back to normal, they aren't the same, and that you need more help to adjust. That includes your family, your work colleagues, friends and your doctors. You need to tell them that you look the same but on the inside you are not. At the moment, it seems you are taking everything on yourself and everyone else is just blindly going on as though nothing has happened. That has to stop. If it doesn't, you will quickly burn yourself out and then where will you all be? Work out what you can change what, you can delegate, what you can shut out. Take stock. This isn't about admitting defeat or that you are somehow a lesser being than you were before. You aren't. You are probably more of a person, stronger, older and wiser. But none of us can go through life without changing. Some changes are gradual and some come upon us more abruptly, as in this case. You don't need to see a professional necessarily, but just sit down and re-evaluate where you are so you are happy in yourself as to where you sit and then talk to the people around you and make the re-adjustments needed to help you cope with the change your body and brain have forced upon you. Don't bottle it up, just tell it like it is, like you have done on here and tell those around you that they have to change too, to a lesser or greater degree, because things can't just go on as they have before. Things have changed, circumstances have changed, and therefore the solutions have to change too. If you feel up to it, that's taking control and is called leadership. That's my view, looking in as an outsider to the situation as you describe it. I wish you luck. best wishes, Macca
  47. 5 points
    It's been almost 20 years since I had my bleed and i still panic every time i have a even the smallest pain in my head. I guess you can say im one of the lucky ones i survived with no noticeable problems. I am weaker on my left side but not much. Im glad i found this site. I didnt know that there was anything like this.
  48. 5 points
    Congratulations on both of your special Anniversaries Macca, you are a very special man, I can’t thank you enough for always being here for me, I love your ‘way’ with words, your understanding and showing me how to look at things from a different perspective. Thankyou, thank you thankyou Jan xx
  49. 5 points
    Hey there Not annoying at all - its very difficult to be the one looking in and not knowing what to say or do. I've had the experience from both sides (my SAH was 12 years ago and my hubby had a near fatal motorbike accident three years ago - he sustained a lot of injuries, including a bruised brain). While I feel that I became more tolerant after my SAH and I didn't sweat the small stuff, my husband is constantly blaming others and not taking responsibility for his own actions - though scans showed that there was and is no actual damage to his brain. As a survivor of SAH , I can only put this down the coping with a near death experience and the huge amount of adjusting and processing this takes mentally. I suffered from panic attacks after my SAH and again after my hubby's accident. It's a huge adjustment for both of you so don't beat yourself up for feeling the way you do - just be there when she's ready to talk, cry or be held - its those little things that count and help more than you could know.
  50. 5 points
    Thank you for taking the time to reply to me. Your comments have really spurred me on. Sometimes I get really down about being 47 but feeling like I’m 87. Because I look normal and thankfully suffered with no residual damage, I feel that everyone in my life assumes I’m back to my old self. For most of the time, I am but when fatigue or head fog strikes, I just want time out and be left to rest. I have to keep reminding people that I have suffered a major incident and I’m not always feeling tickety boo! Now that I’ve found this site I will come and talk to other people in the same boat who will have more of an insight into the aftermath issues of a SAH. Thanks again.
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