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  1. With a big thank you to Les' wife Sandra, to his sons, family and friends for the amazing and very generous gift of £1,100 to help support and run Behind the Gray. This amount was raised after a donation fund was set up by the family as a tribute to our dear friend Les. (Macca) With this gift it means Les (Macca) leaves a legacy of this site continuing to run for years to come allowing us all, old and new members alike, to honour the gentle kindness of our friend, moderator and fellow SAH survivor but continuing to follow his example. Les always came ready to listen, he gave hope where it was missing, kindness and understanding to all and some of the best advice this forum has known. If you ever read a post from Les you knew it came from the heart. Let’s honour that. Les knew how valuable it was to be supported and he knew instinctively to be caring and imparted the knowledge of his own recovery experience and how much it mattered to help make someone else's day that little bit easier. Les will leave his digital legacy with us ... his words of wisdom, kindness and humour will stay with us and will also bring much comfort to those who in future years come to the website for help and support. Myself and all of the staff/team at Behind the Gray hugely miss the presence of Les. x Thank you so much to all of his family and friends for helping Behind the Gray and ensuring that we can provide the help and support to future survivors. We are totally overwhelmed by your generosity. xx
    15 points
  2. Well, I am ecstatic on this cold, bright and snowy afternoon. I have just come in from decorating my daughter's new flat and find a letter from the hospital saying, "I write to advise you that the scans you had on 14th January show everything is stable" It then goes on to say "Dr. Dyde has arranged a further scan to be performed in 18 months and we will write to you with the results when they are available. Currently no further treatment is planned" I am so happy, I could cry! In fact I didn't just get one letter saying this, I got two - an identical letter which must have been sent just to make sure I'd read the first one correctly!! I dread to think how many months I have had all this hanging over me, so the relief is immense. I realise that things may change in the future, but 18 months respite is not to be sniffed at in my book Sarah x
    13 points
  3. Well, I made it! Ten years to the day since my 'event' and I'm still here. It just shows it can be done! It is also eight years to the day that I married the lady that saved my life, my wife Sandra! It is hard to believe that all that time has passed. I am eternally grateful to my surgeon and his team. Well, the weather is fine, the sun is shining, it's a clear blue sky (not often you can say that in Salford!) and we're going for an Italian tonight. Here's to the next ten and thanks to everyone who has supported me through these last ten years. I have learned so much from others 'who get it' on this site and your experiences, strength in the face of adversity, and your downright humanity, humbles me. I wish everyone all the very best in your recoveries however long it takes and just say from me "Thanks for being there!"
    13 points
  4. Hi Carolyn, Great question. I'll answer from my own experience and I'm sure others will add theirs. firstly 6.5 weeks is virtually nothing in recovery terms. Months and years is more the order of the day. What I did, and it was completely wrong, in my opinion, with hindsight, was to set myself a goal of getting back to normal. What's wrong with that, I hear you ask? Well, what was 'normal?' In my head, It was back to being the old me, where I was the day before I had the 'event.' But then, that was all I knew. I realised later that was never going to happen. What I failed to realise when I woke up, was that this was the new me and was the new normal. I just had to find out what that was, and what it meant, for me. If you look at old photos of yourself, you see big changes in yourself that you took in your stride as they happened over time, almost without you realising. It was only when you looked at the photos you realised how much you had you changed and you probably had a laugh about it with your family and friends. At your haircut, your height, your weight gain or loss, your shoes, the car you had then as opposed to the one you have now. They all evolved over time. What you have now is sudden change foisted upon you, in a surprise attack that damaged you, but didn't finish you off. You survived, and what you now have to do is take stock of what happened, how much damage was done and try to adapt and get on with life as best you can. To put it into a context, think of any military conflict where a commander has insisted on a surprise attack and what the response was. The Japanese commander, Yamamoto, planned the attack on Pearl Harbor in WWII. They surprised the fleet there. The American response was to dust themselves down, assess the damage and set about repairing themselves ready to strike back. All the battleships were sunk, but they survived the attack and planned their return strike by using what they had left - the aircraft carriers! This might, at one level, sound absurd, but what I am saying to you is that you have suffered a surprise attack on your body, you have survived, you have to assess the damage done, and you have to find a way to strike back by getting on with your life, adapting to what you have left of your faculties, bodily strength, circumstances and so on. You will find what your new boundaries are by assessing what you can and cannot do. Those you find difficult you will delegate, or avoid, or change. but you will adapt. You will find what works for you. You mention several things in your post. This is how I look at them: 1 Your brain was attacked 2 You survived and got that 'wake up call' and still have your optimism (a great tool in these circumstances) 3 You recognise you are overweight so you have started to assess - now find the right diet and exercise regime with the help of your doctors - maybe that will help you get your 'mojo' back 4 You have realised recovery takes longer than you anticipated - so plan in the time to give you the space to do that 5 You have friends and family - use them to help you in your recovery - you will be surprised how many people will want to help - but you have to let them know you need that help - so tell them - all you need to do is ask! You can't live in splendid isolation all the time. Look on it as how much have you done for others - now it is time for them to give a little back - so lose any guilt complex you might have after being independent for so long. 6 Keep a diary and write things down - including progress and your assessment of where you are, what you need and where you want to be. review it regularly. Embrace the fact that change has happened, deal with it and move on. Learn from the past but don't let it rule you. It sounds harsh, but it is reality and like it or lump it, none of us can turn the clock back. yes you may need a period of recuperation and going through the 'Why me?' phase, but eventually we have to get on with it, so make the best you can of it. All our journeys are different in some way, so why not make it as fun and as useful as you can make it? You have a positive and optimistic attitude - that will make a big difference. Life is worth living, making a few adjustments won't change that in your case. I hope this helps, Best wishes, Macca
    12 points
  5. Well here I am posting a day late, yesterday was my 7th Anni-versary and I had a really good day. My day started with a lovely phone call from Jan, as always it was lovely to hear from her, i had tried to call her on Monday as it was her 6th Anni-versary but didn't get to speak to her, so we had a lovely catch up yesterday and made plans for her and John to come to see us at some point, we missed out on that last year because of Covid, so it will be nice to get together again. I had a really nice day, i had a lovely walk around a little village called Cartmel, not far from our holiday park, in 8 years of coming to The Lake District I have never been there, i was in the company of my lovely friend Mary and my little Molly. There is a beautiful Priory in the village and I had a lovely walk around inside of it, i did sit in quiet contemplation for a little while and said a very big Thank You to whoever was watching over me on the 8th June 2014, I am truly grateful that they were, i then lit a candle in gratitude for my life and in memory of my mam, which was a little emotional. Then we had a lovely walk around the shops, had a nice cold drink in the village Square, then we headed home. It was just lovely. The last year has been a bit strange, what with Covid going on and everything. The worst parts of the last 12 months were losing 2 very special people who both helped me so much when I first joined BTG. Both Win & Macca were in my thoughts yesterday as I sat quietly in that church, then of course my dad being diagnosed with prostate cancer, that came as a big shock, he is however doing quite well at the moment, although i worry about him, I am not stressing to much. As for me, well i have started walking to try and get myself a little fitter, over the winter lockdown I have to admit i was struggling a bit, i think the dark days made it worse, i only walk for 1 hour every night, it has had a massive impact on the way i feel, both mentally and physically, my blood pressure has come down considerably from 157/75 to 120/ 65 which is about where my GP wanted it, so i am over the moon with that. I have also taken more control of things in my relationship with Verdun, some of you are aware of things that have gone on in that area of my life, well I have stepped up and I seem to be making good progress in not allowing myself to be bullied and abused anymore, still a little bit to do yet, but i feel more able to stand up for myself, i am determined to get things back on a level ground and for the first time in a long time, I feel I am getting my confidence back and some self respect along with it, which can only be a goid thing. I know i haven't visited BTG much in the last couple of months, i have made the decision that if I am going to moan, I won't visit, I feel like i have done a lot of that in the last year, so i thought it would be good to give you all a rest from me. I have been looking in, just not posting much. The one big thing I do want to say is this, Thank you Karen, i know I say this every year but I wouldn't be where I am today if it wasn't for this wonderful safe haven you created for us all to come to, i found this site at a time when I still felt like i was not going to make it, with the support and help that I received when I joined, I am where I am today, I will be forever eternally grateful to you and every member of this group, for every bit of advice, for every note of concern and for the empathy, love and support that we all have for each other. I love my BTG family, I have gained 2 very special relationships from this forum, Jan and I are especially very close, love that lady to bits, Andrea has become a very close friend too, i am blessed to have them both in my life, just as I feel blessed to have you all in my life, my world would be a much sadder place without you all. Thank you, thank you, thank you for always being there, you have all helped me through so much, i will be forever grateful to you all. Here's looking forward to the next 12 months, let's see what it brings, hopefully everything good. Love Michelle. Xx😘😘😘🙏❤
    11 points
  6. Seems mad that six years ago when I woke in the morning little did I know how much my life would change within 12 hours. There have been many ups and downs, job changes and friend changes, life is similar but different. I can’t say it’s worse as I now can’t remember what life was like pre-bleed lol! But I do know that life is slower. Will take a run this morning, something I was doing when I had my bleed. May even run past the spot where I first felt that awful headache, confident that it won’t recur today. For all of you behind me in your time line, remember life post bleed is not all bad, just different 😉 Clare xx
    11 points
  7. Good morning all hope that you are well and have a great day xxx Well it's my 18 year anniversary today and what an 18 years it has been xxx I was nearly 5 years in when I found behindthegray and I will always be glad that I did I have found some lifelong friends here and no matter how down I am feeling you are always here xxx I still have problems brain zaps lightheadedness heart palpitations but it's a part of who I am now but the good things I now have outweigh the bad my two boys 17 next month 13 this month my job being able to go on holidays now I can't walk as far as I could anymore partly because of the sah (and vertigo) but mostly because of fibromyalgia (unrelated) but my kids don't want to go out with their mom anymore (which suits me fine) so I have managed and got by xxx Well not going to ramble on anymore got to get up get myself dressed rush the kids along so we can all leave for work and school just wanted you all to know you can have many years of happiness after sah xxx
    11 points
  8. Hi All I haven't visited this site for some time, now I've acclimatised to being a SAH survivor, but you all spring to mind at every anniversary.😀 After all, who knows better than a SAH warrior what it's like to live with the affects of having a SAH? Well, today is my 5th anniversary. Every year is a blessing for me. When I recall how it was straight after my haemorrhage compared with how things are now, I realise that I have come a long way. Yes, I still have some challenges- my memory still stinks, my balance is poor, I gained a lot of weight, I suffer from fatigue, and I get irritable extremely quickly - but I've also learned so much from my experience, such as empathy and compassion for others, which has instigated a change in career for me, from being a teacher to being a trainee psychotherapist. I just wanted to say to all of those people who are still at the early stages of their recovery, things really do get better, so live in hope and dont give up. Happy anni-versary to me! X
    11 points
  9. Thank you all very much for your kind words. I really find it difficult to believe how long it has been since this awful event happened to me. The silver lining though is that I came into contact with all of you. From my point of view, I think you underestimate how much of a help you all are to me with the inspirational things you do, sometimes in the face of terrible adversity. I think this group is a kind of push me pull you type of thing where we all bounce and thrive off each other and long may it continue. Just for the record, my wife and I had a fabulous meal last night in a superb Italian restaurant to cap off a lovely day. Once again, thank you to everyone for 'being there' for me. Macca
    11 points
  10. Hey everyone, so it’s my nine year anniversary today. I collapsed at an event I was running for over 300 colleagues in central London, should have been my day off and which was the saving of me as a friend with me whose husband died from a SAH realised what was happening and insisted on calling 999. A paramedic fast responder doc was a neurological SME, I got rushed to UCL after a Grand Mal seizure and was at the National hospital for neurology and neurosurgery and in the operating theatre within 6 hrs of being admittted. I had a grade 4 SAH with acute hydrocephalus and went on to spend over 5 weeks in ICU acute care and hospital and was later readmitted to have a shunt fitted ....who knew that is what a day I would have, it was all shaping up to be such a fun day So today I wrote a entry for the blog I started after I was readmitted to hospital a few months on with complications after my SAH that blew up my life on this day nine years ago and led to James (Shunt) being placed. It was as you all know and share a horrid and hard time and I just wanted to track it somehow. I don’t write posts to my blog much at all now, just do it really to mark that days anniversary and more for a marker for myself. It’s an odd one as the main part of ‘surviving’ really came in the years after and which you all share as an experience but of course the dramatic event was such it marked me and plays such a factor in who I am today and so I choose to take stock. Read if you wish, not if you don’t. https://popgoestifty.blogspot.com/2021/03/what-difference-year-makes.html. Sending love and light to anyone who needs it today and always hope and look for the small wins each day. I always think they are there to be enjoyed no matter how hard won Daff x
    10 points
  11. Just had a phone call from the hospital: my coils are all functioning properly and everything is as they’d expect. Repeat scan in 12 months. I’m currently grinning like a Cheshire Cat. Such a relief. Mustn’t think about 12 months’ time just get on with life 🎉🎉 Sally xx
    10 points
  12. I’m grateful to be able to come her and peruse the posts and comments. It’ll be four years in March since my SAH. I STILL have headaches and a buzzing feeling in my head. But I’m ok with that to be honest. My husband is wonderful and seems to intuitively know when I’m not feeling great. I worked for a medical doctor before retiring and we chatted recently. After doing some research he found a study and told me that 16% of us will live with chronic headaches. They come and go! So I’m resigned to that but so very thankful to still be active! To hike and jog a bit with the dogs and enjoy the outdoors is really good medicine. I Hope each one here has a blessed year.
    10 points
  13. I do believe I am still getting better every year. Less headaches, few "sad" days, and better memory retention. Thanks to everyone on this site for your awesome support and love. Chris
    10 points
  14. Thank you Paul. I remember you from all those years ago back in 2009 when I discovered BTG while searching about SAH’s and all the advice you gave. I’m glad I could tell her about this site because it really helped her and when she was nominated for a stroke award she was chuffed to bits. Mums passing was very sudden and unexpected. One minute she was fine and the next she got very ill. We thought her shunt had failed but it turned out to be heart failure. Thank you also to the others who have replied and for your kind words. I do read them all but I don’t always come on here to reply, not as chatty as my mum was 😇 but the messages are appreciated. We got a memorial for her at the crematorium. We thought it right that ‘keep smiling and singing’ was on it. Sarah.
    10 points
  15. My one year anniversary was October 11th, and I haven’t been on this site, in a long time. Happy to be alive. Still having a few problems, but for the most part, I feel wonderful. Anxiety, and Panic attacks are still quite often. The last few days, been dealing with headaches and a feeling of extreme pressure in my head. Which makes me feel fatigued and tired. I feel like I need a massage inside of my head. That’s really strange to say, but I don’t know how else to explain it. Hope everyone is doing well and staying safe. Take care of yourselves.
    9 points
  16. Thank you everyone for your replies, suggestions and kind words. I introduced myself first and then started to read through the forums and posts, there was so much information that was relevant to me, i found the answers I was looking for in there, not so much what I wanted to hear but I do understand things much better now. I especially loved the letter to my brain. Thank you
    9 points
  17. I feel there is something about people not wanting to see the fragility of life and the realisation that we're not really in control sometimes with what happens with our bodies. I remember a colleague saying to me "but you're fine now" and I was so annoyed I couldn't put together a coherent sentence to answer them. Yes, I am fortunate that I don't have any noticeable physical issues but that doesn't mean I'm fine emotionally or mentally. Some people's reaction seems to be that it's easier to just pretend nothing ever happened.
    9 points
  18. I found this line did the trick "I look well from afar, but I am far from well". The problem is you can't put a bandage or a plaster on your brain for people to see. Explain to them that if you'd had a heart attack, then people would be telling you to rest and take things slowly. Well the fact of the matter is, your brain has had a "heart attack". I soon realised that the best thing for me was not to worry about what people thought, but how I felt. I'd tell people that I was fatigued as this was a result of the SAH and that I needed to rest - it really is up to them to deal with, not you - your main priority is getting you fit and well xx
    9 points
  19. Hi, I’m a newbie, discovered the forum by chance and it’s been a great help. It’s very useful to hear other people’s experiences as it’s something the specialist can’t tell you. Before I go into my story ... if you spot spelling mistakes, I’m Belgian, so English isn’t my first language and my Ipad has the unfortunate habit of switching Words to Dutch 😂 I had my bleed on feb 18th. I’m single, so was home alone. I’m used to severe migraine attacks, but immediately realised this was something completely different. Immediately sent a chat message to some friends to bring me to Belgian variant of A & E. I tried to get to front door to unlock IT, but had to give up half way there, so first sat down and then, as I thought IT might be a bit too dangerous should I lose consciousness, laid down on the floor. I knew I was having a brain bleed as my mom had one (she had a brain seizure a couple of days later and sadly passed away) and because it wasn’t my usual headache. While I was laying there waiting I kept checking if I Could still think, talk, make calculations, move my limbs, ... I didn’t lose consciousness and my friend, a volunteer fireman, was there within 15 minutes (jumped my 1.8m garden wall apparently😂). He called for ambulance while I gave him all relevant information, like the fact I suspected brain bleed, my blood type, the fact I have porfyria which affects the medicine they can give me (still thought I might lose consciousness). I started vomiting too ... and had just eaten a huge bag of peanuts, so not a pretty sight 😂 I was in A & E within an hour of the bleed, with mild hypothermia (from laying on cold tiles) and scan showed, like I suspected, a severe bleed. As soon as my COVID-test cleared, I was brought to ICU, hooked up to all kinds of machines and drips. The severity of the bleed made them think I’d continue having them through the evening, according to my brother. Found that out later though. I was pretty alert throughout and was able to discuss my condition with the head of ICU that evening (though by then I was pretty doped up on pain killers). They suspected an aneurysm, but it wasn’t clear on the scan. I underwent another type of scan the next day, which showed a possible aneurysm, though extremely tiny. They had me transferred to a more specialised hospital, for further testing and operation (clipping cos deemed too tiny for coiling). I had an angio, which showed no aneurysm however. All arteries okay. I had a SAH with no apparent cause it seemed, Hunt and Hess grade 2, Fischer grade 3. All in all I was hospitalised for 10 days. I’m home in sick leave since March 1, have another scan and consult with neurologist next week. At the moment I’m okay. Some days are better than others. I still have an occasional headache, very mild though. Then again, I’m used to severe headaches from migraine, so ... Sometimes my brain does some strange things, strange sensations within it, which is a bit frightening, but ... part of the deal I suppose. I’m okay with doing things around the house and garden, doing administrative stuff, .... but I take care not to strain myself and I do it way more slowly than before. I need more sleep than I did before and it’s hard waking up, takes me longer to be completely awake, but it’s still early days. My concentration is getting better too. Think my eyesight in one eye has worsened a tiny bit, but might be too early to have it checked out. One thing I found out though is that I can’t get angry at stuff anymore, otherwise I get a splitting headache 😂 Will have to learn to become more Zen. I think I might be ready to go back to work, though not fulltime. Work has been brilliant though, if okay for the neurologist, I can go back in whatever capacity I want, with sliding hours where I do my hours whenever I want, so can take naps when needed. I know I have to be careful not to want too much too soon, but ... as a single person, having wages replaced with sick pay is a catastrophy financially. I’ve taken out a loan last year to build my house extension, so ... need to pay that off or I lose my house. I’m lucky I work for local government, so sick pay doesn’t kick in immediately (still have some days left before it does), so my idea is to gradually move up to full capacity, using the remaining ‘sick days’, the offered sliding hours and then my vacation days (I have a whopping 35 days stashed up) to the fullest so I can rest up when needed, taking care of my body and mind, whilst minimizing the financial loss. And to be honest, I actually long to go back to work. I’m bored to death at home.
    8 points
  20. Well, haven’t tried the other part of the song yet 😂 am waiting for next consult to ask whether it’s okay to have alcohol (low quantity) again Think my attitude stems from past experience. My mother’s side of the family has the unfortunate hobby of dieing at a relatively young age, so already took into account that it could happen to me too. It makes you live your life differently I suppose. My gran has survived a grand child, her three children and her husband. Though each and every death devastated her thoroughly, she always found the inner strength to go on and live her life, to enjoy the little things. I called her the original Phoenix. When she passed away at the age of 86, I had a Phoenix tattooed on my back in her honour. I guess I’m just like her, I just use ‘experiences’ like that to ... become stronger? There’s still too much of the little things for me to enjoy: the Hairy toddlers (4 cats), early morning photography in the middle of nature, books, music, holidays, food, ... And though Covid and my 6month driving ban (grrrr) might have put a stop to some of that, it’s only temporary. I’ll just use the intermediate time to get my strength back up. When there’s still things like the pic to enjoy, how can you be down? Though that said, I’m now off to clean upstairs and if there’s one thing I hate, it’s cleaning windows 😂😂😂😂
    8 points
  21. Quick update: MRI from January 5th looked good. Coils are intact and are in place. 👍 It was the Head of Neuro and my Doctor who coiled my first aneurysm from 2010 that saw me this time. We asked him about the stent and he said he does not think I need it for now. He ordered another MRI and Angio for July which will be my 1st year anni-versary for my second aneurysm and go from there. It makes a world of a difference when the Doctor is straight-forward and as decisive as he was unlike the other Doc I saw in November. I know everybody is different and I trust their expertise. I just felt more at peace this time and boy, it feels so great. 🙂
    8 points
  22. Just come out of hospital. Unfortunately my scan was delayed by 40 minutes which didn’t help. Staff were so helpful and kind. She put the head cage thing on and I couldn’t handle it so she thought what she could do instead and used a different device which didn’t come over my face. My husband stayed with me the whole time. I was crushing his hand! Unfortunately the headphones weren’t working with sound as we found out afterwards that the cable wasn’t attached. The third scan was the longest and seemed to go on forever. When that stopped I had to press the buzzer as I had reached the end of my tolerance of the whole experience. But they’d finished anyway which was good. Still it’s all over now and I’m exhausted. Thanks everyone for all your kind support. I really appreciate it. Sally xx
    8 points
  23. Hi. I will attempt to briefly introduce myself and apologize in advance if I have messed up on the ‘rules’. My brain is a bit fuzzy. 😜 I had just finished a little get together with three of my grandkids and sat down to have popcorn when suddenly the head and neck ache hit me. At that moment I remembered hearing a man on the radio talk about the headache that would kill. He said call 911 and tell them that, and they would have a heads up about what was happening...so I told my daughter to call and tell them that. Within a few hours I had been airlifted to Iowa City, to the University of Iowa and had surgery. Like many of you, I have no clear memory of much that went on after that. So from 11/29 through 12/09 it is all gone, but on the 9th I remember a group of neuro surgeons were gathered around my bed and one said they had waited long enough and would put a shunt in that afternoon...and sure enough, I ‘woke up’ about 7:00 that evening and I had stopped vomiting and the headache was at least tolerable. From there I was transferred to a rehab facility on the 11th and then discharged to go home on the 17th. I really am only now beginning to understand how serious this has been, and still is. I have always been a very positive person, so I have been taken off guard that a little fear has crept into my head and heart. I do not like that, AND I want to be wise about what I am facing. Physically I really am doing well as far as any disability from the SAH. It is mainly my brain and all those thoughts and emotions that go on there that are ‘tripped up’. Plus of course the nagging headache. Thank you for the advice to stay hydrated. I am really working on that, as well as deep breathing. 😁 I had just last year, October 2019, bought a house and moved from my ‘marriage home’ as my husband of 38 years decided he did not want to be married anymore; so, I have had an even more interesting 2020 than the COVID stuff. But I was doing well and getting adjusted. I simply really believe God is with me, that I am not alone. That is a big part of the message I read from you all as I look at all of your posts. This is a safe place. That is what I need. thank you so much.
    8 points
  24. That is so kind of Macca's family, enabling this site, which helps so many, continue into the future. Macca will always be remembered by those who 'met' him through this site as someone who always put others first, always willing to help others with his sound advice which was gained through his own recovery from a sah. He had an amazing gift of writing his posts so eloquently, leaving the reader with knowledge and advice that came from the heart. Sarah x
    8 points
  25. Macca... your words are so inspiring "sudden change foisted upon you, in a surprise attack that damaged you, but didn't finish you off... Carolyn amazing words from Macca, I am 3 years 4 months from my SAH and Vasospasm. What I wrote above from Macca is exactly how I felt, i was surprised (shocked) but it didn't finish me off. Carolyn you are still in the early days of this, I know you know that. I had no patience for the slow movement of my recovery and pushed hard to do some things that made me feel in control. I had this visual in my head thinking I wanted to see it in the rear view mirror...haha, I don't know why but that seemed to make sense to me. It has moved over to perhaps my side view mirror but it is not standing in front of me anymore. I will talk a bit about the fatigue, I simply must surrender to this on occasion. I find if I continue to push I start feeling a bit out of control of everything...I have made it a priority, sometimes I just need to sit down for half an hour, sometimes I need more. Dealing with it mentally has also been a slow process for me but I continue to learn to be good with myself. I did go for some mental health therapy and it was helpful...A good session of visualization makes me feel content inside...I practice at home now... I wish you the best Carolyn, please come and post whenever you need to or want to, we all share something here xx Jean
    8 points
  26. Hello BTG forum I have just found this group and am posting for the first time so please forgive any fopars... If this introduction is too long winded I am sorry, I am having a very difficult time coming to terms with what has happened and am struggling to find any useful feedback from my doctor... I don't want to burden my family with my worries and found this group and read some threads and hope maybe I have found somewhere and a group that will understand what I am going through and be able to offer me meaningful guidance for this journey.. As an introduction I am a very lucky survivor of a no cause SAH which happened on the 23rd Jan 2021... 4 days before my 49th birthday.. My life prior to the SAH had been a wild adventure, numerous businesses and a rewarding career, 19 years overseas in the Gulf and Asia, some extraordinary experiences, several scrapes and situations you could not make up as stories, and I truly felt like I was Batman...invincible... Wow was this SAH a rude awakening and why I am now truly lost.. My SAH story.. I was sitting at my desk at around lunchtime trading cryptocurrencies and forex which I used to do daily, very relaxed smoking "herb" my chosen vice when a sudden onset "thunderclap" headache arrived... Unusually for me I knew something was not right as said having lead varied life and being through many scrapes my "gut" told me this was not something to ignore or self medicate for.. so I took myself to lie down, pain killers didn't work and after a couple of hours I called the NHS line to get advice.. I ended up having to take a taxi mid afternoon, alone to Southport Urgent Care hospital where they conducted CAT scans, chest XRays, bloods etc. and told me they believed i had had a brain bleed... Luckily for me I was very lucid, I was in fact still trading online on my phone which the doctors thought was unusual but I was really just trying to distract myself and prove to myself my brain was working.. Due to COVID I went to hospital alone, my fiancé is from overseas and didn't understand what was happening and was alone at our home, my 78 yr old mother was alone in the midlands and my sister alone in London...I had to make them all aware what was going on which was a decision I struggled to make to be honest, not fully understanding what I was going through and not wanting to cause my family stress They decided to send my in an emergency ambulance to The Walton Specialist Neuro Centre in Liverpool.... the nurses in Southport and ambulance staff were incredible and kind and started to try to explain to me the severity of what was happening ... All I can say about the care I received from the NHS is that it was incredible, many of the nurses and doctors are indelibly written into my memory... A 2 week stay at the Walton Centre, CAT scans with dye... 2 DSA procedures, not able to have MRI as apparently I have metal in my eyes and for someone like me, who understands through facts and data, the most frightening and stressful diagnosis... No cause SAH.... So, you nearly die, are incredibly lucky you are not physically or mentally impared, after 2 very invasive DSA procedures they have no idea what happened or why... is it just me that finds this more difficult to deal with than something that could be pin pointed as the cause... A separate "incidental" aneurism in my brain that they at this time do not want to treat.. So 3 months on having had to find a new house to rent as our landlord had sold where we were, the stress and physical exertion of the move and my own stupidity taking on too much I am now in need of advice and support ... I am willing to share my experiences and happy to be an active member of this group and truly hope as I learn and progress I can pass some insights to others in need.. However, at this time it is I who is in need, maybe a delayed reaction or realisation that I am not who I was before it happened I feel quite lost and alone in how to deal with the cards I have been dealt.. So I thank anyone who has managed to wade through my introduction and thank in advance anyone who provides advice either directly to myself or to others that I find reading through the forum posts.. I am happy to be here, and look forward to learning and participating where I can Thank you all again I am sure I will ask many questions moving forward... Best wishes to all... Daniel..
    7 points
  27. Hello, I live in Oakland, California, USA. I had a NASAH on December 23, spent 5 days in the hospital with excellent care, and then sent home with minimal information. I'm so glad I discovered this forum--I'm having on-going symptoms that have freaked me out a bit, but reading through some of these posts, I see it's all to be expected and shared by other NASAH folks. This is also helping manage my expectations in terms of how long they'll go on for--the doctors really made it seem like I'd be back to my baseline within 6 weeks. With me, it's like I improved 75% in the first couple of weeks after discharge, but this last 25% of symptoms--headache and fatigue, mostly-- is just stubbornly sticking around. I'm 59, and pretty healthy. The NASAH occurred when I was riding my bike up a steep hill--something I do -- or at least did -- all the time. I think I'll just ride the flat roads for the time being. From what I'm reading, I seem to have not gotten a terrible case of it--I was back at work a couple of weeks after the incident, though I'm lucky that I have been completely working at home for the last year. I'm taking more Tylenol than I used to, but getting the work done. A follow up MRI from last week didn't reveal any big problems. Anyways, that's it--just wanted to introduce myself, and I look forward to learning more and sharing more NASAH stories with you all!
    7 points
  28. Hi All, This is the week 4 years ago that my life took a bit of a turn. SAH with no explanation...followed a few days later by vasospasm which was worse. Intensive care rehab and thankfully home. Today I am still bothered with what I call my feeling of being Swishy (feels like I walk on a boat).have not fully regained my core strength..but I tolerate it ok...feelings of being mixed up a bit pops up now and again but again I can deal. I think I have gotten use to the feel of my body. I am of course aware of how I felt before for 64 years but I will say this and I say it loud...I am so very very thankful for surviving this and realizing that being patient with myself has been the key to how I feel today. I realized at year 1 that I had for sure improved but truth year 2 was remarkable. I really could see clearly that I had to measure this journey in months not days. It was a very helpful discovery for me. I also went for mental health therapy for a bit and found it to be very helpful as well. Today, I am excited that I am awaiting the birth of a grandson and my son just got engaged, so we are planning a wedding...Since my event my husband and I have enjoyed traveling and enjoying our friends and family. I recently signed up to be a zoo volunteer and am trying to learn Spanish. I am trying to make everyday count. So friends I wish you all well and I ask you to give yourself patience and time, the human body is an amazing thing... xx Jean
    7 points
  29. Hi everyone, just to say thank you all so much for the lovely and helpful replies. It really means so much and has made me feel much better and reassured. I will go through each one again in detail (still takes me a while to retain information!) but just wanted to say how grateful I am to read all your responses and for the lovely welcome. 😊
    7 points
  30. I’m 43 and I’m head of a tiny department (4,5 people and no, I didn’t saw one in half ... she works for another department too). Local government, a coastal town in Belgium. Closest equivalent to my job I’ve ever seen is ‘housing inspector’, that daytime program on the BBC a few years back, so declaring houses uninhabitable due to low quality or because the inhabitants are hoarders or just plain messy. I also do some local taxes, so I have a really positive job! 😂 😂 Stress level is moderate most of the time, high on occasion, but after 16 years I’ve pretty much seen and heard it all, so doesn’t really get to me anymore. Blood pressure is always 12/8 I’m keeping hydrated, so much so I feel like I’m getting my 10000 steps a day just by my frequent trips to the bathroom 😂 Yeah, you have to keep your sense of humour. I’ve even ordered some more mouth masks and T shirts with a sarcastic text, to keep my wardrobe updated 😂 One says ‘ long story short, I’ve survived’ 😂 because I’m already sick and tired of explaining what happened 🙄 Some friends feel I’m not taking everything serious enough, but I am. I know I’ve been very lucky to have escaped unscathed and I have taken steps since the ‘incident’ so that, should this or anything like it ever happen again, but with worse outcome, my brother knows what to do regarding funeral (though he won’t approve the sarcastic song choice 😜), have updated my living will, so there’s a DNR, the legal documents regarding ‘unplugging machines’ are in order, ... So yes, I do understand I went through a life threatening and life changing ordeal, but ... I refuse to let it rule the rest of my life I suppose. You just have to get on with it, the best you can. Like Chumbawamba sang, way better than me: I get knocked down, but I get up again. You’ll never keep me down. And yes, I know I need to rest a lot. I used to sleep around 5 hours a day (insomniac), now that’s 8-9 hours and am not doing anything all that taxing yet. That’s why my plan is to phase in work gradually. I’m just lucky I can do it like that, what with my tiny stash of fully paid sick leave and then my 35 vacation days left. The flexibility Regarding when I do my hours is also a big help and The good thing about being the boss is that you can delegate though, which I’ll be doing more from now on, whenever I feel I need it.
    7 points
  31. Well, today is my 17th SAH anni-versary. Where have all those years gone? Still enjoying life to the best of my ability although, like just about everybody, the last 12 months have been hard and I think, will be hard for the next months to come. I actually found out I share this anni-versary with the launch of Facebook 17 years ago today. Wish I had as much money as Mark Zuckerberg . https://en.wikipedia.org/wiki/History_of_Facebook#:~:text=Facebook is a social networking service launched as,Saverin, Andrew McCollum, Dustin Moskovitz and Chris Hughes. "Facebook is a social networking service launched as TheFacebook on February 4, 2004. It was founded by Mark Zuckerberg with his college roommates and fellow Harvard University students Eduardo Saverin, Andrew McCollum, Dustin Moskovitz and Chris Hughes."
    7 points
  32. I'm a family physician graduated in 2001. I had my shots in Dec and Jan. It was Moderna. Arm pain with first shot and flu like symptoms but not fevers after 8 hrs of second shot. Lasted may be a day and totally better the next day. It is a normal reaction of your body trying to make antibodies. It is very safe protein molecule so it can’t change your DNA or cells. You won’t grow a tail 😺 it is very unstable that is why they keep it cool. Moderna has a better method of putting the protein in a fatty/ butter like substance so it does not need extra cold temp. Pfizer does not have that method so they have to keep it extra cold. But someone has to really know how to handle, store, draw, shake Pfizer vaccine. Some people have more reactions than others. If one is above age 55 the reaction might be milder. Many people with cancer etc emphysema , on meds lowering immunity have got them and they did fine. So if you can get it please please do get it. Cases are down here I think thanks to the vaccine. Good luck
    7 points
  33. Thank you for all the warm welcomes! I look forward to being part of this very unique community. Seems these things often occur during exercise--a friend of mine told me that you never hear of NASAH happening to people while sitting around watching Netflix. (He was joking, of course.)
    7 points
  34. Such a gem of a man and the generosity of his family in their time of loss is humbling. Les said more than once on this site; “Keep talking to us and we will offer our support.” And he always listened and answered here and I hope his legacy means many more people feel less lost post their SAH thanks to that gift. I think Win would have also added, “we are gonna miss you pal” 💞
    7 points
  35. Hello everyone! it’s been awhile since I posted, but I can’t let an anniversary pass without checking in. My anniversary date is actually tomorrow, October 26, but I wanted to post today as the opportunity presented itself. October 26, 2016 is the day that defines my life as before the bleed and after the bleed. I have been one of the lucky ones because other than the occasional headache, « fuzzy brain » and some fatigue, I’ve done pretty well. I am an Early Childhood Educator (30+ years) and I had to leave the classroom, as it was too chaotic for my brain. Today, I work with children on the Autism Spectrum as a Behaviour Interventionist - in their homes. Same field, just tweaked a bit. Personally, my main struggle has been the toll it’s taken on my mental health. When needed, i can count in friends, family and you! I have had therapy and that is always a big help. At the end of the day, this site has been a validation of my feelings, my fears, and has provided me a community of of generous, kind hearted people who have walked a mile in my shoes. For that I thank you. So, on this anniversary, I want to wish all of you continued good health, and most of all, laughter💜💜💜 Much love, Pat
    7 points
  36. It’s been 17 months since my bleed but only one year since I was discharged from hospital after my last operation. It has been a challenging couple of years. I only stumbled on this group a few days ago and it was good to come across others who have been through a similar journey. Sorry for the long Message but a lot has happened in the last 18 months. I don’t remember anything from just before the bleed in April 2019 till my last operation in September 2019. Some of the blanks have been filled by my husband and children but they don’t like talking about that period as it was a painful time for them. So it’s a mixed blessing to not remember the pain and agony that I went through during this time. During that time I went through several operations including a couple to put a coil in to stop the bleed and another to put a shunt in as I had developed hydrocephalus. They initially put in a fixed pressure shunt but my body did not adjust to the pressure and resulted in over drainage which meant my brains started drying up and collapsing. This caused further bleeds. They decided to operate again and fit me with a variable pressure shunt. That was in September 2019. I was finally discharged from hospital a couple of weeks later. It’s after the final op that I regained awareness and my memory was back so I have memory of everything from September onwards. The blank period of April to September is interesting. I was apparently hallucinating a lot during this period and had no concept of time. My children and husband tell me that my character had changed completely, I was apparently very mean and had no filters! I have a high profile job so tend to do a lot of long haul travel for work. Apparently during my time in hospital I was hallucinating I was travelling to different countries. I would be adamant that I was in a hotel in Switzerland/South Africa/India and could not accept the nurses telling me that I was in a hospital in London. Anyhow, I can laugh about it now with friends who tell me that I would send them text messages saying that I am in a party in South Africa...lol! When I gained awareness in September, I had been in bed almost 5 months. So I had to relearn how to walk and use technology such as my mobile phone all over again. It’s now been almost a year since the last operation and I consider myself really blessed to have not only survived the bleed but to have come the other side with only minor issues. I am still not steady on my feet and my memory is not what it used to be but it’s a lot better than where it was in September last year. I still suffer from high blood pressure (despite not being over weight and I don’t smoke or drink) and I will be on blood thinners for the rest of my life. I was able to return to work in November on phased approach. The company that I work for has been great, they have been really understanding and flexible, couldn’t ask for anything more. I even took the plunge and went on holiday to Spain in October, only six weeks after the operation. It was good for the family to get away and forget all that we had been through. I struggle with some really low days and the Covid situation has not really helped. I lost my dad in April this year due to Covid and I have found it a real struggle since he passed. He was suffering from dementia for a couple of years and was in a care home. After losing him, I had this feeling of futility of life. Sometimes I wonder if it would have been better to go last year. Why prolong life, only to end up suffering like my dad did at the end? However, despite the low days, I know I am blessed as I have a wonderful supporting husband, amazing children and really supportive family friends and colleagues. I have truly felt loved and supported. Another really positive for me is that my faith has become stronger. I always believed in God but was less practising of my faith in recent times due to work/family commitments but this was a wake up call that life can end at any moment so I need to be on good terms with my creator. I truly believe that this life can’t be it, there must be another purpose why we are here. There must be a reason why we go through all this struggle in life. Therefore, I need to prepare for the next life as much as I prepare for this one which is only temporary. I read about an interview with Anthony Hopkins this week where he described life as a terminal condition. Being in his 80s I guess he is thinking more about death now. But I knew what he meant. No matter how long we live, we will all expire one day. I am only in my mid forties so don’t want to constantly think morbid thoughts but my experience last year and my father’s passing this year has made me think more and more about how fleeting life can be. so I am trying to take it one day at a time for now. Like everyone, got some good and some bad days but hoping to have more good days than bad as time passes...
    7 points
  37. Aw thank you Subs. It's quite surreal looking back on the year since Terry's SAH. Such a roller coaster ride of emotions, and we've jam packed it with love and togetherness. We remain grateful for every single day, and often reflect on where we've come from. I know Terry needed us to help him recover, and we needed him just as much to be here with us. He never lost his sense of humour or determination. It's incredible how much a person can suffer and still survive, and recover. I hope we can continue to encourage others who manage to make their way onto BTG. This site saved my sanity and gave me hope, so much hope from such loving people. It was something that the medical profession couldn't offer in the same way.
    7 points
  38. You are welcome. As I’ve mentioned in our conversation, thank you for all the work that you do! You and the rest of the volunteer staff do so much for all of us who relies on the support and wisdom this site offers. You are all amazing!
    7 points
  39. Hi Carolyn I was discharged from hospital with absolutely no information on what had happened to me, what I should /shouldn't be doing or what I could / couldn't do. My "physio" before I was discharged was walking up and down half a flight of stairs and being able to take myself to the shower and the toilet. A pile of tablets were pushed into my hands and that was that. This was 14 years ago and no sign of COVID anywhere! Like you, I got more information from this site than from anywhere (and there were only 9 members when I joined!). In the last 14 years I have had two MRIs - the last one 18 months after my SAH and have no contact with any specialist since. I took myself to my GP when I began to feel anxious and depressed and was diagnosed with PTSD and referred to their therapist. He was amazing. Despite this, I still maintain that it was this site that got me through. Fluids and rest of most definitely the most important thing right now - as is trying to keep a sense of humour. Our dear departed Win, would also tell you to sing when you're feeling down or anxious - and its actually been scientifically proven to help. We're all here for each other with support and encouragement. Have you popped into the Green Room yet? Karen (our wonderful founding member) set up a forum on here where we could just go in for a daily chat and laugh - it's helped everyone enormously by distracting from the medical side of our situation. If you haven't visited yet, make sure you do. Keep posting, and remember, we're here for you every step of the way.
    7 points
  40. Well, did my first two days at work and .. I’m pretty much okay. Was well tired yesterday, but think that’s more because sunday’s Line of Duty’s cliffhanger left me a bit hyper and unable to sleep than due to work 😂 I work a bit slower than I used to (that speed was untenable however ... I was like the Duracell bunny on speed), but hectic mix of phone calls, huge open work space with colleagues dotted about here and there, the adoring public when they come to make a complaint, politicians badgering you, ... (it’s such a joy being a local civil servant 😜) ... so far, I’m dealing with it quite well. The 80% progressive return was approved, am off tomorrow to just laze about. Had results back from last week’s MRI (neurologist really, really, really wanted to be sure there wasn’t a hidden aneurysm, so had to psych myself up again to get into that damn machine... claustrophobia) and everything is okay. It was definitely perimesencephalic. Only one more neurologist visit to go: mid august, so I’m legally allowed to drive again (by law at least a 6month ban in Belgium). Already booked a holiday to the South of France beginning of September, so ... the countdown begins: getting vaccine, getting driving license back and then off to the mountains to take pics, drink Chartreuse and eat humongous amounts of excellent food 😂
    6 points
  41. Hi Rosie The best thing you've done is open up! I completely understand that you want to avoid discussing what's happened, it's personal, it's yours. I had a real problem discussing it when I had a stroke but eventually realised that talking about it was the best thing I could have done! Being totally honest Rosie , it is people like you who inspire me. You are prepared to come onto a public forum and express your true feelings; that's amazing, well done you!. The best thing we can do is talk about what's happened. I wish you the very very best and hope you take the advice/help you'll find here.
    6 points
  42. My Subarachnoid haemorrhage happened on 26th Feb, I was at work and all of a sudden had the worst headache imaginable. I managed to get outside where I was met by my husband ( who works at same place) and 2 of the shift managers, all I could do is clench the back of my head and neck, my throat felt like it was closing up and I remember I was crying. My managers told my husband to take me straight to the hospital which is what he did. Owing to covid restrictions he wasn't allowed past a&e car park and was told to go home. I was left alone, in pain and frightened. It took an hour and half to be seen by the triage nurse who gave me 2 x paracetamol, and although my BP was through the roof told me it was probably a migraine and to wait back in the waiting room. At this point I was questioning my own symptoms and thinking how stupid I'm gonna look going back to work and telling them I had a migraine at the same time the lights and the sounds of people talking were driving me insane. 4 hours later ( total of 5 1/2) to see the doctor. I was called in and as soon as I told the doctor what happened I was straight down for a CT scan where it was confirmed I had a bleed. I was awaiting transfer to another hospital which specialises in neuroscience but to be accepted had to have a negative covid test. After having 2 covid tests as the first test was a normal test which results could take 48 hrs and I was supposed to have a fast track test so I could start treatment that I needed, and waiting for transport (first lot of transport refused to take me because of the diagnosis as the wrong hospital transport was first booked) I eventually made the neuroscience high dependency ward 24hours after I initially got to a&e. The care I received there was fantastic, I was on complete bed rest laid flat on my back and catheterised from the minute I arrived, this was all overwhelming as at the previous hospital I was able to walk around, go to the bathroom independently basically just waiting and using up a trolley until I was transferred. I was taken for another CT scan and had an angiogram which showed no aneurysm. Consultant said it was a spontaneous bleed with no known cause. After 10 days in hospital I was discharged, it's still early days but I was expecting to be better by now, the fatigue is immense and even though I was warned about the after effects I'm still quite shocked how debilitating the tiredness and the continued headaches are. My short term memory is shocking and I can't concentrate for long. I'm hoping this doesn't continue for too much longer as I need to get back to work to earn money, I'm getting SSP at the moment which is not sustainable for too long. I'm glad I came across this forum, reading about other people's experience has put my mind at rest as I was worried about the continuing symptoms but realise I'm on a long load to recovery and realise it's not a race to get better and that I need to listen to my body.
    6 points
  43. I had the Pfizer vaccine on Tuesday, my arm was very painful that evening & Wednesday morning, I then developed a headache that was really intense & painful but after about 6 hours it was like a switch was flicked and it vanished completely & since then I've felt fine. The vaccination centre we're really good at explaining what might happen & also who to call if we were worried but definitely talk to your doctor and the staff at the centre. Even feeling as rough as I did it is worth it not to catch Covid
    6 points
  44. Agree with what Karen says. I'd just add that the first year after my bleed I went for a lie down/snooze every day from 6pm to 7pm. Definitely the quiet and dark is good for resetting things.
    6 points
  45. A fantastic legacy in honour of a fantastic man who has left a huge hole in so many lives xxx
    6 points
  46. Hello from Compostc 66year old male had my Sar 21 07 2012. I got my iPad this year so am just learning. Wish i had it 8 year ago This site would have helped me a lot back then. I can’t fault the hospital treatment and care but once discharged I was just left to get on with it. I think I’m still getting better though I still do to much . never seem to learn
    6 points
  47. Hi JH A very bizarre sequence indeed. As Tina said, your mum is in the best place and I'm sure the Drs will be doing everything they can to find out what has happened. We cannot give medical advice here, but we can offer support and experience. All I can personally deduce from this is that your mum has had a NASAH (and that is not to say I'm right and is something you MUST ask her specialists) - which is rip/rupture/tear of an artery wall without the aneurysm. There is a section on this forum for NASAH and it might be worth you having a look around the posts in there to see if you can find any similarities to your mum - though I'm not sure we have had this sequence of events before. I'd make a list of questions in a notebook as you think of them and ask the Drs when you see them - also write down the answers they give. It'll act a good reference for you as I can imagine that a lot of what you're being told will either be baffling or won't be remembered - and that's perfectly normal given the stress that you will all be under at the moment. Please feel free to look around this forum for comfort or reassurance, and remember to look after yourself too. Take care, and fingers crossed that your mum recovers well xx
    6 points
  48. Great advice Chris. It stopped me being paranoid about it happening again and really helped me in my early days of recovery. Brian.
    6 points
  49. Thanks everyone can't believe how long it has been xxx My eldest actually came to tesco today to have lunch with me and bought me some sweets for afternoon shift bless him xxx
    6 points
  50. Thank you all so much for your replies. Your support is massively appreciated
    6 points
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