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  1. ADAPTED By BTG member Subzero Onward sharing or publication by his permission only. There`s no going back To your previous abode. No, SAH has led you On a different road. There`s no going back You`ve a new life ahead Confusing, upsetting And at times full of dread There`s no going back There is no quick fix But you`re building your new life With different bricks. There`s no going back BTG wants to help you Their message is clear Rest-drink whatever else you do. T
    19 points
  2. Today it is 14 years since my brain decided to play silly devils. After an initial struggle to come to terms with what had happened and many months of recovery I now have a good life. It may have knocked my sense of balance and memory off kilter but I look on it as doing me a big favour in the long term. Positive thoughts. Yes, I know I have to use a walking frame but that hasn't stopped me enjoying life, I look on it as my bit of independence. I was unable to go back to my profession due to the balance problems but I eventually made a new life for myself that I enjo
    18 points
  3. I think I have shared that I started a blog , pogoestifty when I was back in hospital again post my SAH waiting to hear whether I needed a shunt which did. I found it great therapy ever since and it allowed me to track my progress and share with family and friends how I was doing. I blog less these days but have just posted for New Year and I thought I would share some of my list on that post here on BTG which as a forum helped me so much to make my adjustment and peace with what happened. "So as we head to the start of another year I thought I would share my lost and found list of
    17 points
  4. 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
  5. A letter from your brain Hello, I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That’s why I need you. I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don’t shut me
    15 points
  6. Hi, Today (9th September), is two years since my Perimesencephalic Brain Haemorrhage and I just wanted to say "Thank You" for this forum. Here was the place where I could read of others who had gone through the same trauma as myself. I saw I was not the only one who couldn't juggle everyday life, using credit cards, driving far, having odd headaches at various times and also having melt downs for no particular reason. To speak to my Consultant, my issues were not worrying, my GP asked me about what it was I had and how it happened. I felt out on a limb. Luckily I could drop in no
    15 points
  7. 12 years ago today my life and that of my family's changed in a split second. After recovery I had to cope with disability which also affected those around me. I now look on the SAH positively in one respect, no point in brooding, it happened and you can't turn the clock back. A teenage girl once said to me that I have made a new life. How true that is. The SAH afforded me to live my life as I wanted, without any work constraints doing what I want when I want. That is the bonus. Because I was no longer able to continue in my job I was retired early, leaving me with the opportunity to
    15 points
  8. It's not often I write or start a new post these days preferring to respond to other posts but on this dull and dank Autumn morning in the UK it has got me reflecting on how my brain and lifestyle has changed since my SAH and resulting hydrocephalus and I guess I want to get that out there into BTG land. Prior to my SAH I ran life like many of us; at full tilt, leaning into the wind and busy busy busy. I am mum to two young girls , I worked near to full time and managed a fair social life into the mix but much of that description is different now I sit and reflect nearly three and half years
    15 points
  9. It seems a long time ago when my brain sprung a leak but my memories from that day, the days in hospital afterwards, and at home recuperating, are still very strong. I had no concept at the time of a long term recovery. In fact I thought 'no problem, I'll push through this' and get back on with my life like nothing has happened. Wrong, very wrong. I don't think anyone told me that a long recovery was going to happen, or I wasn't listening if they did, but I certainly wasn't prepared for it. Here I am three years later and my life is definitely not the same as it was. But actually I think t
    14 points
  10. 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
  11. 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
  12. Apologies in advance it’s bit long winded but then it has been 20 years seems a bit surreal really, but thought because it was that long I’d share a bit of how far I have come since that time a long LONG way so many up’s as well as down’s on here I use the phrase ‘swings and roundabouts’ and that is true of my recovery for every few steps forward there was the same and lots more back the way but eventually there were no steps forward and this is it. Keeping a diary is a good way of knowing how much things improved something I didn’t do at the start I kept forgetting to write things
    13 points
  13. I had a particularly good session with my Headway Occupational Therapist yesterday. The topic for our session was helping me with strategies for helping others to understand what my strengths and weaknesses now are. One of the things my OT shared with me was the article in the link below, and I though I would share it with you all as I thought was quite good. http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html Not all will be applicable to us all, but some of it may be, it was for me. I will share some of this with my d
    13 points
  14. Hi Victoria, Welcome to BTG, I`m so sorry you are feeling such despair, what I`m about to say I have not said to anyone apart from my doctor. When I had my SAH in June 2014 my partner was fantastic, he really did take good care of me, always reassuring me that everything would be fine, no matter deficit I was left with we would get through it together, When I left hospital I had left sided weakness, couldn't walk unaided, had a lot of head, back and leg pain, the hospital gave me pain meds to take when I was discharged home. I`d been home about 4 weeks when ou
    13 points
  15. Subs and All xx I met my Hubby at work, at first I thought he was a bit rude/bighead. 44 years on I still think he is the best thing that ever happened to me. (still a bit quiet but he doesn't get a word in with me ha). I cry when I talk about him as I love him so much, but when we first got married life was tough, so we lived with my parents until we could afford our own house. We've had some good rows but I still Love him so much xx We worked together running our own business, ate and drank(lots) together. He is my best Pal. My Sisters all said "my husband wouldn't do what y
    13 points
  16. The 21st of august will be the first anni-versary of my SAH. I'm writing about it now as I'll be in Portugal on the day, so hopefully I'll be in the sun and near the sea with a glass of (non-alcoholic) bubbly to celebrate. ? It's hard to believe that a year has gone by - flown by. I still find it hard to believe that I survived two ruptured aneurysms and one unruptured one, and that I've managed to go from being unable to even make a cup of tea to returning to work. But that's exactly what I've done. So on the 21st I'll be raising a glass to all the SAH/stroke survivors out there a
    13 points
  17. Once of the most distressing things for me post SAH was my ability to cope with cognitive demand and sensory overload. It was painful. In time that’s passed since, 7yrs, I have learnt more about my triggers but also how to pace and rest in ways that’s right for me but I still know flooding can and does happen. I still wear sunglasses and earplugs on many occasions and still alway carry them. lots of people come to site and struggle with the sensations and how this feels And I think this is a great education video that explains it credit to Northern Brain Injury Association
    12 points
  18. 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
  19. Thank you everybody for the kind sentiments, gestures and comments for my mum, our family appreciate it very much. xxx
    12 points
  20. 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
  21. The "Letter from your brain" inspired me to write this: Dear family members, I know you had a huge scare, could have lost me and just want to protect me, however, I have a few requests that would help me feel better: Please don't shout" you forgot to turn out the bathroom light AGAIN!" Or "this time you left the butter out of the fridge!"please try not to give me huge sighs or disgruntled noises because I left my cell phone downstairs again and could use your help to get it. I know that my memory is not what it used to be and believe me, I am harder on myself about that then anyone el
    12 points
  22. Paul So glad you liked the hamper - Karen really wanted to do something special for you and we were all for it. You've continually offered so much support to others on here despite your daily toil and looking after Lin and her welfare. You are an amazing person and restore my faith in humanity every time I read one of your posts. You are truly truly amazing. I, for one, look forward to the day when you and Lin are in a wonderful place together and she is well enough to maybe have a trip out and we can meet face to face!! Enjoy the contents of the hamper
    12 points
  23. So many things I could mean by that title, it could be the amount of tears I have shed over the last five years or it could just be the fact that here I am arrived at the five year mark wth almost a feeling of awe and amazement and so much water has gone under the bridge in that time. 5 years ago I was working at a busy work event in London to mark IWD. That proved to be my saving. Surrounded by people to whom when I remarked there was something "terribly wrong in my head" they acted, they got me help and by the time the bike paramedic arrived I was having a grand mal seizure. Big
    12 points
  24. Tomorrow will be my 2 year anniversary but as I have a neuro-psych appointment at 8am followed by work from 9am -6pm, followed by an evening with an old work colleague I thought I would post now. ( I'm exhausted after reading that let alone living it ). I look back over the last 2 years and consider everything that has happened in that period. Some has been good, some happy and a lot sad. I had to leave the job I loved, I lost friends I loved but I kept my life. I'm lucky that I now have a job that suits my lifestyle, that causes me minimal stress and I have friends w
    12 points
  25. I think that many of you have perhaps heard about or you've seen the Stroke Awards publicised on Behind the Gray. https://www.stroke.org.uk/what-we-do/life-after-stroke-awards I would just like to say, that I believe that everybody, who's suffered any type of Stroke/SAH, is completely worthy of an award and over the years, I've seen a lot of courage and humanity on Behind the Gray. There are so many members who've had to go that "extra mile" and who still give support to others and that includes our Moderators, who are a complete joy to work with and I'm blessed!
    12 points
  26. Eureka!! I have returned to this site hoping to find information/confirmation/reassurance that I am not over-reacting or looking for problems that aren't there - as this is what I know those around me think! I have spent time reading through posts and advice and find this one. MO5....I am truly sorry to hear of your situation & YOU should be proud of all you have been & continue to deal with, humbling indeed!! Furthermore, your original post mentioned so many things that I have been 'struggling' with over the last few years and recognise,. But have been tol
    12 points
  27. This time four years ago I was sitting down after a wonderful but busy day with two of my dearest friends and enjoying a chat and catch up over a couple of cheeky drinks and coffee. One was my job share partner in the role I loved and the other an ex colleague going back to my early days at work. I had another busy day ahead so was staying up in London but it's my very last memory from my 'old brain' and so I cherish it as the following morning at my work event, surrounded by hundreds from my company I was felled by my SAH. I have zero memories other than those I have been told since. I was a
    12 points
  28. I couldn't make up my mind whether to post something to mark my "anniversary" but came to the conclusion that if I was giving it that much thought then I probably should. This time last year, I was just thinking about the last half an hour or so of work for the day, before closing the laptop and getting in the car to heading to the gym. Little did I know then that within 20 mins or so of being in the gym things were about to change quite so much. It is a cliche, but also true this last year has been such a journey for me (and for my family). In some respects I feel that the last year
    12 points
  29. Excellent letter to the family - can totally relate. I have a woman at work who is ten years older than me and all I get from her is "well when you get to my age, you don't remember everything..." Her age is an excuse for everything, so I turn round and say "I'm lucky I reached my age, let alone yours and my brain is still recovering!" It shuts her up - which suits me fine lol,
    12 points
  30. I don't think that Win's post was intended to make you feel upset or to make you feel personally offended. Nobody is telling you that you can't have a bad day.....we all have those. The above comment from Win was well intentioned and I think that you've perhaps misread it or taken it out of context, as Win always ends her posts on a positive and light hearted note as that's how she deals with life. Win's had it tougher than most of us on here physically and it's a miracle that she can even type a response on this forum from the early days of her daughter posting on here when Win was in hos
    12 points
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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
  36. It is15 years tomorrow since my life was changed. In fact it is so long ago now I tend to forget the date of the event, I have to look it up. So far back, the date has almost disappeared from my memory. Looking on the positive, my life has changed for the better once I recovered the best I could. No point in looking at the negatives, you can't change what has happened. Grasp what you have with both hands and move forward the best you can under the circumstances. May take ages just to make a little progress but determination will help. There is a future af
    11 points
  37. As a healthy sixteen year old being told that you need life saving brain surgery is a little more than unexpected to say the least. In April of this year I collapsed with friends and was rushed to hospital. After many different scans and an extremely Ill teenager who had never had an issue in the past, let's just say I left doctors puzzled. However, my medical mystery wasn't left without an answer for long. My family and I soon found out that I had a ruptured aneurysm which is otherwise known as a Subarachnoid haemorrhage. Within 48 hours I was having life saving brain surgery
    11 points
  38. Paul, it was sent with much love from BTG, for all that you do for Lin and for all of the support that you give to others on BTG .... and thank you for being you. x
    11 points
  39. Hi Robert, Welcome to BTG. I wasn't going to reply or join in with this but in the end I couldn't resist. The opinions I give below are entirely mine and I base them on what you have said, and your style of writing, and your responses to others above. They are given with the best of intentions, but I hope you can get something from them, even if you don't agree, if only you get some clarity on how you see things in order to move forwards in your recovery. Please don't keep beating yourself up about this. I have identified a number of issues here and I thin
    11 points
  40. I wrote the following a couple of months ago. I think some of you will identify with it!I it gave a couple of my family members an insight as to how I was feeling THIS IS ME losing Things I've lost......... a chunk of my life My confidence My Independence My Stamina My motivation My identity I look in the mirror I don't know the person I see,who is this looking back at me? The 'old Jan'has gone, I miss her, I mourn for her People look at me differently now. I have to accept the 'new Jan' can you too? I am angry and sad inside but I can walk and talk so must be ok? I will be.
    11 points
  41. Jan -This is you! Lost 5% - there's another 95% to play with. Confidence - you just need some temporary reassurance - you're doing just great! Independence - it's still there, you just have someone to help now and again until you do it yourself again Stamina - catch the bus - it's just a different route to the results you want. Motivation - the doctors and nurses who helped you and your family who stood by you and cared for you. Identity - you've just added some new facets, familiarise yourself with them and you'll see the old you is still in there too! You are ok -
    11 points
  42. Hi Nat As you can see from above how you feel is entirely normal but that said it is really horrid and unpleasant living with this level of fear and so I think all of us are united in saying don't suffer it alone. Go to you GP, ask for counselling and in the meantime do things that help you relax and let the panic and worry subside when that feeling comes upon you. Survival is a funny thing. Our adrenalin kicks in and that helps us deal with the unpleasantness of our trauma in the early days but that wears off and then we are left with the legacy of knowing and feeling the trauma of the expe
    11 points
  43. Daffodil, so eloquent thank you. Gemma, you are on a similar time line to me so perhaps in a number of ways my thoughts are similar to yours. However, not quite a year in, I'm not sure if its delusional but I don't yet want to think what I may have lost. I will keep on trying things and see if they get better or easier (perhaps not too frequently). Back in early March a bought a ticket for a gig this December, and had to give it away. At the start o this journey I thought I would be OK by December, but this year not. I will buy another ticket when they come on sale next year, and we will s
    11 points
  44. Hi all Nine year anni-versary for me today. My daughter realised that she has lived with me living with this for half of her life, and whilst she is an amazing person and has coped so well with it all, it does make me sad. Just want to take this opportunity to thank Karen and her family for setting up BTG - it was the best thing to aid my recovery and it helped so much knowing that I was not alone with all the fear, anxiety and anger that I had in the early days. I've made, and met, some very good friends through BTG and it is a privilege to be a part of all of your lives - although
    11 points
  45. I've been in two minds as to whether I would write something or not. I had my SAH Anniversary on July 25th. Firstly, I would like to thank the fabulous team that I have on BTG, who help to support me and the site and who also write with great wisdom and support all of you guys on the forum and all have had a SAH and going through the journey with you. So, here we go!... much thanks to the very lovely team that I work with and who give up their free time and energy to support BTG.... Sami, Tina, Jess, Super Mario, Daff and Macca ... all incredible people and it's a complete pleasure wor
    11 points
  46. A letter from your brain Hello, I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That’s why I need you. I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to
    11 points
  47. Hi and Welcome to BTG. Wow!!! You sound like Wonder Woman! However, in reality you are not, so stop beating yourself up. But you are wonderful. You are one of those wonderful people who looks after everyone else before yourself and often to your own detriment. Now that you need help, it is time to re-appraise somewhat and be a little more selfish in your outlook for a change, at least until you are better. Let's look at this a little more critically. You are only four weeks out from a potentially life changing event - no time at all. Change has been thrust upon
    10 points
  48. Well a year ago today I was probably sitting in the GP's. I had stupidly drove myself there after experiencing the most horrific pain in my head whilst showering. I thought someone had assaulted me over the back of the head with a baseball bat which knocked me to the floor. I now know that an aneurysm I had, had probably bled. This year has been a tough one, whilst I know from this site how lucky I have been coming away with some mild memory and physically problems it has still been a hard journey. I have looked today at texts sent on that day and can still feel how fearful I was. My aneu
    10 points
  49. Five years ago today marked the start of a new era in my life. I survived the truly awful ordeal that we've all been through in one way or another on this site, me a a sufferer, others as a carer or relative. Thanks to advances in technology and medicine, I survived and I now look on life as every day being a bonus gift - time to make the most of. That is my way of giving thanks to those that saved me and who cared for me in the darkest hours. Five years on, I am still here and give thanks to this support site, who have been there for me when I needed help and advice. I doff my cap
    10 points
  50. Hi All, It will be my 6th year since my head popped/SAH on 29th July 2009 my Family say !! I was given hardly any hope and look at me now. So to all who are new to it, I suggest you laugh a lot, sing a lot and keep near happy people. Seriously just live life to the full and enjoy BTG and it's people. I was so scared after I was told what happened to me, my daughter found this site to be so helpful to her while I was out of it. She told me about it and I have never laughed so much since 2010 xx Keep the Faith and Laughter going. Many thanks to all who keep this
    10 points
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