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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 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
  3. Thank you everybody for the kind sentiments, gestures and comments for my mum, our family appreciate it very much. xxx
    12 points
  4. When I was back in hospital in 2012 I was pretty destroyed if I am honest. I had my grade 4 event, grand mal seizures, acquired hydrocephalus , EVD surgery, coiling surgery and , endured the weeks of intensive care, of hospital stay. It was a long 7 weeks before I was allowed home and then when I did get go to home I could do nothing. I had sitters, I couldn't Cook, wash, sleep normally, let alone do any of the grown up things like look after my young girls or cook, work, or drive. I was 39 years old. But I tried to start putting the pieces back together but three months afterwa
    12 points
  5. 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
  6. 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
  7. 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
    11 points
  8. March 6 is the day. It feels like a lifetime ago (so many changes) and yet, also only like it happened yesterday. I am just now starting to adjust to the "new normal" and taking more command over my emotions. My faith has kept me hopeful. I am thankful for my family, friends and BTG folks who have surrounded me with prayers, support and love ~ and patience. It's been a difficult recovery. I think more so because during this time I lost my mother while I was still in the hospital (April 2018), my father this past November 2019 and my aunt (mother's sister) just on February 15, 2020
    11 points
  9. 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
  10. 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
    10 points
  11. 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
  12. 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
  13. 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
  14. 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
  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. 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
  17. 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
  18. 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
    9 points
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. Hi, Thought I'd share my experience with you. I am 66years old. I didn't know this at the time but when I had my SAH in 2016, my brother was told I had only a 20% chance of survival. 6 months down the line, I was just about to be released from neuro rehab. I was able to walk about 20 yards but had to stop for rests several times. I was still partially wheelchair bound. This was not acceptable to me. I forced myself to walk at a very slow pace for an hour a day. I fell over a lot. My progress was further hindered when I needed a new hip. That w
    9 points
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. The song thrush was out last night in the garden....made me think of Win. x
    8 points
  31. 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
  32. 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
  33. 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
  34. 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
  35. Hi Diane I completely echo everything that has been said. One of the first things I did when I came of my meds was drink! Not so much during the week as I was working, but Friday and Saturday nights, Sunday lunch times - it was getting out of hand and the worse part about it, the more I drank, the worse I felt. I had that open and honest conversation with my GP and was referred for counselling - after the GP pointed out that alcohol is a depressant, so instead of making me feel better, it was making me feel worse. At the time, when you're drunk, you don't feel or beli
    8 points
  36. Hey there After my SAH I went through exactly the same things as you're going through now. I was depressed because I couldn't do all the things I could do before - also ran (and still do) a business with my husband - now I also work full time in a very busy school office. I'm in 14 years post SAH in August. I also found that when I was feeling so low, my immune system went to pot and I got more coughs and colds in the first year after than I'd had in the previous decade. Coughing now still gives me headache and its the worst part of having a bug.
    8 points
  37. 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
    7 points
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
    7 points
  43. I loved your mom so very, very much. She was my great friend and I will miss her dearly. Love to you and your family. Carolyn
    7 points
  44. 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
  45. 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
  46. I had not realised until I read these kind and supportive words, how sad and anxious I was. The tears have relieved the tension that I have been feeling and I thank you all for the part you have played in that. John and I took the dogs for a walk today and I was mindful not to walk too far ahead of him along the path through the woods, and to wait for him and be patient. I know I will not change overnight but to know that our situation is one that others know about and have been through is an enormous help to me.
    7 points
  47. Hello my name is Simone. I am excited and nervous to have this resource. My husband found it for me over a year ago. I have read many post and feel comfort knowing that I am not alone in my struggles and victories. In 2016 I had a Hemorrhagic stroke due to postpartum preeclampsia. The bleeding was in my right Occipital lobe and affected my vision. Recovery has been hard and I am not who I was prior to my stroke, but thankful to be here with a new sense and perspective in life. Flash forward to 2020 I am pregnant again and very nervous. I will try to post, when
    7 points
  48. I just found this site! I"m coming up on three years since my SAH. I am so excited to read the experiences of others who had a similar experience. In March 2017, I took my dog for a walk as normal. I was a healthy 59 year old with a history of exercise and regularly jog, lift weights and achieved a 4th degree black belt. No one has ever accused me of being a delicate flower so when I experienced a headache so severe it almost brought me to my knees I knew something was seriously wrong. This was pain!.... I'm not sure exactly how I made it home as i was probably
    7 points
  49. Hey Diane, I'm guessing that it wasn't easy for you to post, so well done for your honesty! x I do know of other SAH'ers in the past, who've also self medicated using alcohol, because they were finding life tough in the early months and years of recovery. I'm guessing that there are others on BTG now, experiencing the same, but who would perhaps prefer to private message you, rather than using the forum in order to keep their privacy. Firstly, I would say that you need to visit your GP and have a completely honest conversation with him/her. Let them know that you're st
    7 points
  50. Dear all Don’t know where I should put this but I’ve noticed that the replies I put on my thread thanking those who’ve taken time to write aren’t appearing. I’d hate for anyone to think I’m not grateful for their input. I know entries are moderated but I didn’t think I’d put anything inappropriate. So to all of you who’ve contacted me on the thread I’d like to say a big thank you. Sally
    7 points
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