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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 wher
    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
    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 ye
    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 h
    12 points
  5. Thank you everybody for the kind sentiments, gestures and comments for my mum, our family appreciate it very much. xxx
    12 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,
    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
    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 f
    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 l
    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 an
    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
    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 o
    10 points
  15. Thank you for your post, Matt. I fully understand what you're saying. It's been just over two years since my hemorrhage and, all in all, my recovery has been good-to the point I thought I could function in life same as before, other than being a little more tired and trouble finding my words at times..which I downplayed or joked about. Recently, though, issues have arisen that have caused me to take a more serious look at the effects of the hemorrhage and how they may impact my function. It's difficult, isn't it? When you know you're one of the "lucky ones", when others
    10 points
  16. Devastated by this news. My SAH was almost ten years ago. It was some time before I found out about this site and when I joined Win was one of the first people to greet me and she told me about singing and having a laugh. I didn't think much of it at first but then one day she said something very profound and it has stuck with me ever since. She told me there was always someone worse off than yourself, and rather than be miserable and look on the down side of life, I should look for new opportunities as the 'new you.' It didn't dawn on me until a couple of days later what she was
    10 points
  17. Oh Sarah, I’m so sorry about your lovely mum. She leaves a huge hole at BTG and I’ll so miss her cheer and optimism that she often shared with us here. She was one of the shunt gals gals and I Loved my ‘Mrs O’ chats in the green room, she even changed her picture to Mrs O. She was a special brave lady and so proud of you, her Al and of course Tilly. take care in the coming days. Let the tears flow. Let us know if practically there is anything we can try and Help with as her community of online friends. I guess The singing just got a whole lot
    10 points
  18. 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
  19. 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
  20. 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
  21. 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
    9 points
  22. Well a bit of a fright this morning from Google Photos! Here's your photo memory of something that happened 5 years ago today....and it's a picture of me in my hospital bed! Thanks for all the support! Andrea x
    9 points
  23. Hi Everyone, Well here I am 6 years since my bleed, can't believe how quickly this time has passed. I think I am doing ok, still noticing small improvements, although I still have a lot of problems with fatigue and my memory I am still learning my limitations, still sometimes pushing myself beyond them and paying the price for doing so, I think we all do that sometimes. The last 12 months have been good and bad, the good being we bought a nice new caravan and had a very large new deck put on it, it's lovely, it really is my sanctuary and having it has helped
    9 points
  24. Thank you for the lovely flowers and card we just received, it was very kind of you all and much appreciated. My dad placed them on the table next to my mums chair. sarah xxx
    9 points
  25. Dearest Sarah, i had not been on in a bit and this is the first thread I came upon. I am so shocked and saddened for the loss to BTG but know it is nothing compared to what you and your family is enduring. Win has been such a bright light to us all, always ready with encouragement and so good at teaching us to laugh at and accept ourselves. She will be so sorely missed. Prayers of comfort for you and your family, including Tilly. It was so clear how very much she loved you all. Colleen
    9 points
  26. Oh no Sarah, devastated by your news. My sincere condolences to you all. Win was a member of this forum who always brought a laugh and a smile to me, and her singing, well. She will most certainly be missed on here. God bless you all.
    9 points
  27. Hi, I am a day early with this post, due to work. April 25, 2017 was the day that I had my SAH...it was something I never saw coming...It was a small SAH as I read my medical records but it felt like someone hit me with a bat in the head. I spend 3 days at Mass General in Boston...I was in good shape when I was discharged, some pain in head but nothing else. Moving on to the morning of April 29th....In the shower, home alone I had a severe vasospasm...noticed hands losing sensation and feet also, I was able to call emergency (put on some clothes I don't remember anything t
    9 points
  28. 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
    8 points
  29. 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
    8 points
  30. 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 bu
    8 points
  31. 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 th
    8 points
  32. 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
  33. 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
    8 points
  34. July 24 was the date. One year on and throughout that day I kept reliving what happened a year ago over and over. Pleased to say my balance is improving but still a bit iffy. My short term memory is still a bit frustrating. Still can’t remember dreams but I get tiny flashes of dreams that last for a minute or so after I wake up. I guess new pathways are slowly beginning to work which is amazing. Woken tonight by a sharp pain behind my ear which is odd and giving me cause for concern so I’m hoping it’s nothing going wrong. I do try not to live in fear of recurrence or shifting coi
    8 points
  35. I am so glad to have found this site or to be honest my wife did! I have been in touch with "HEADWAY" and they have been great but this site seems so interactive and understanding. It has been more than a year since my SAH and all the complications that I endured ie Hydrocephalus,drastic decreasing of sodium and Vasospams. I really do not remember the event happening but thank god my wife was here with me when it happened, or I would not be here talking about it. I have a shunt fitted and would love to hear from others with one implanted, as I have had problems since I
    8 points
  36. So so sad to hear of the passing of the amazing Win. Always had a cheery tale to tell and positive words for newcomers. Our loss and a new angel for heaven xxx RIP Win xxx
    8 points
  37. The song thrush was out last night in the garden....made me think of Win. x
    8 points
  38. Donated some money to BTG in memorium to win. We will all miss her. I thought about her this weekend when I had to dye my hair myself. she always made us smile. May she rest in peace.
    8 points
  39. I've stuck a big heart on my window for Win .... It's next to a big basket of teddies and at 8pm ... I'm going to bang on a saucepan and rattle it, like no one has even seen! xx
    8 points
  40. Sarah I am also devastated to read your news about Winnie's passing. Winnie was such a great 'online' friend to me personally since we met 5 years ago and as Karen says she is so well liked by everyone here on BTG with her own incredible sense of humour. Her encouraging words to everyone ..'Think happy thoughts and keep singing ' will never be forgotten, and her frank insights into her childhood years with her family as she grew up were lovely to read. Thoughts and sincere sympathies are with all your family especially you, Al and Tilly. Subs
    8 points
  41. With many thanks to those members who are making a monthly donation towards BTG funds.....It's very much appreciated! x Also, a big thank you to Marobinson71 for a very generous donation and it will help to keep BTG up and running for a further 3 months, which is fantastic! Thank you guys! x
    8 points
  42. 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
    7 points
  43. 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
    7 points
  44. 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
  45. 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
    7 points
  46. 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 painfu
    7 points
  47. 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 save
    7 points
  48. 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
  49. Sarah, I am so very sad to hear that your lovely Mum has passed away, you must be devastated - my thoughts are with you. Reading all these tributes has brought a tear to my eye as I too will remember Win as a lady with a great heart, a fabulous sense of humour and an infectious singing voice. She was a remarkably strong person for recovering so well after her sah with all the added problems that she encountered along the way which you bravely shared with us at the time. Then we met Win on here and she became one of the family and kept us all entertained with her upbe
    7 points
  50. Sarah, I’m so so sorry to hear this sad news. Over the years dear Win gave me such strength and lots of laughter, through some very difficult times. Heaven has gained a truly amazing bright star. I shall sing out loud for you lovely Win. Much love and great big gentle hugs to you all SarahLou Xx
    7 points
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