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Showing content with the highest reputation since 06/03/15 in all areas

  1. 19 points
    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. There`s no going back We go forward together Each day in our posts We give help to each other. There`s no going back With these highs and these lows And our will getting stronger The end result who knows But we are going to adapt Our work may need to change Take account of our brain Our schedules rearrange But we are going to adapt House work can wait As I negotiate with my brain On how much it can take But we are going to adapt If I take too much on Fatigue will soon hit me And I won`t get it done. But we are going to adapt Each day helps I feel. I must not be impatient Give my brain time to heal. When will we arrive there? We are all different you see The road that you take May not be for me. When will we arrive there? I`ve come to accept That each day brings new meaning Things I didn`t expect When will we arrive there? Please..family…wait and see I`m confused and uncertain Please be there for me. When will we arrive there? There is no way to know Just hold my hand tightly Where ever I go
  2. 18 points
    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 enjoy. Unable to do most of my housework (something I hated but necessary) I now have a cleaner. In fact I do very little in the house. I spend most of my time doing things I enjoy doing. I can travel when I want, no adhering to a set holiday routine and I do love to travel, exploring different cultures, Europe only though because of insurance costs, but so what, I am following a dream of my younger years. Initially I thought that the SAH was the end of the world, my opinion on that gradually changed and I now see it as a positive event in most ways. The message here is, look on the positive and not the negative. Your life is what you make it in spite of possible difficulties, there is always a way round them. I have gone on to make a good life for myself, you can too.
  3. 17 points
    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 living and adjusting to life post my SAH bleed and the subsequent surgeries for that and my shunt James which has left my brain changed forever. I lost brain a lot of brain cells 8/3/2012 due to the severity of bleed and through the surgeries and hydrocephalus but I have learnt , regained and found new ways of learning since then and I now treasure and treat my brain a lot more kindly and tread a little more gently through life. I have lost touch with some friends since that time but have gained an understanding of what true friendship looks and feels like. I am blessed to have the people that I do and I don't ever take their friendship for granted. I just hope I can one day help them the way they have helped me . I have lost a lot of worry and fear, it's strange how an event that forces you to know your own mortality can do that but I have found I am much more at ease and accepting of situations and really don't worry about much. I lost a little of my ambition. Well I think it's safe to say I have realigned it to the possibility of achieving whatever my current state allows but in doing that I have found I enjoy just doing what I do, for now anyway. I have lost respect for people that just moan and witch about everything and everyone without doing something to change but have found courage to walk away and distance myself from that. You don't ever need that stress in your life and it appears my brain hates the effect of it therefore I do not allow it in mine. I have lost a lot of social fun times and this has been hard to adjust to as you see I liked a bit of scene, a party, a loud concert but I have found I adore a 121 conversation just as much these days , it requires less energy and booze than dancing on a table and I don't care too much about the subject on offer as long as it's one that interests, intrigues or inspires and is with good company. I have lost living for tomorrow or in the past. I have found I can only do what I do and live in today and with a bit of luck and a fair wind I will have another one tomorrow and if it doesn't well I can say,'well today was a good sort of day' I have lost the ability to sleep completely flat due to the effect of my shunt at night so now sleep Barbara Cartland style propped up on cushions but without the pink nighties and feather boas but have found that you really can get used to and adjust to anything if you keep a positive outlook. I mean every time I forget and tip my head to far or back I get to hear my gravitational valve work and move, how cool is that, I get to hear the internal workings of the rubies at work with the hamsters. I have lost count of the pills, procedures, scans and doctors I have seen but I have found that progress is best measured by looking at your lowest point and then where you are today, nothing else really matters. I have found it always good to try help someone else no matter what your struggle is and so I have the lost the inhibition to offer help if I think it's needed. I have lost the feeling that I have to go it alone for something to matter or be worth something and learnt it's actually better to #lean in , you can take the corners better and it makes it easier to hug other people if you do. " What did you find and lose? Happy. Healthy 2016 to you all.
  4. 15 points
    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 now and then to BTG and feel comfort in your responses and having the knowledge that this was all par for the course. Two years down the road I see great changes, I can see my progress, but I also know it was fairly slow. I can trace back to days when I would be in a supermarket and my husband could tell that all the noise about me and the decision making on what to buy was just too much and he would escort me to the car. He would watch me as I would begin to try and process using a debit card again. He would travel beside me in the car to make sure I felt confident and had the concentration driving again. (I am still not driving longer than an hour and a half on my own). I had to tell people I was slow to respond as my brain was taking a little bit longer to register things, and people were very accommodating. Headaches would come and still do, but I can cope. (In fact a physiotherapist has been correcting my neck and shoulder in the hopes of correcting my off centre neck and drooping shoulder which could be causing some of the pain at the back of the head. The neurosurgeon said some could be due to neck problems, but no suggestion of getting that sorted, I got my own physiotherapist). Even though two years has past and I still have a few issues I think I am back to what my consultant had said he would expect, 95% back to normal and am I grateful. I still need to have MRI scans so the neuro-radiologist can monitor a small area for no changes, something they feel has been there from birth but must just watch over a period of time. To all of you going through early stages, keep up the good work, don't stress, rest and recover at your own speed and your bodies ability. Continue checking in to this great forum to relieve yourself of any of your own worries. Also check with your doctor if you have medical problems but for the support and for the help from those who have gone through a similar situation this is the place to be. Two years ago at this time I was in A&E waiting to be be taken by Ambulance (Blue Light), to James Cook Hospital and all I could think of when the doctor told me I had suffered a brain haemorrhage was what was the future going to hold for me. I have to say the future was a blessing and that includes me finding Behind the Gray, with that I have had hope and encouragement. Thanks to you all, Irene
  5. 15 points
    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 continue my love of travel without being restrained by holiday entitlements. Travel I have done, to places I could never have thought I would visit mainly due to high prices. Now I can pick and choose the most affordable. My whole attitude to life changed 12 years ago, there is more to life than work, work and more work. My motto now is "Live life to the full to the best of your ability, blow tomorrow, it may never happen"
  6. 15 points
    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 on from my 'event'. I am able to work part time these days, I am fortunate I can do this mostly at home over video calls and computer with occasional trips to the big city. That helps money wise. I drive again, not far and not long but I am mobile. I can walk at length but nothing 'spinny' or high velocity so I have a little exercise routine that works for me , I don't drink at all and am in bed by 9.30 most nights as my battery runs out but then. I feel my brain acutely most days. That's a strange thing to say isn't it but I imagine most of you will get it. I know most of the people I come into contact with Day to day won't give a moments though to their brain and how it's doing but having spent some serious alone time doing nothing but watching and observing my brains thought, it's pain, it's changes since SAH I can honestly say I feel I know my little grey neurons a lot better these days and so I give it more attention and consideration. If I don't it just knocks me to my knees anyway so respecting the limits is an important part of my new mode of operating. The pain , discomfort and fear that sat with me in the early years are really reduced these days but I carry the weight of my personal change of capacity and ability and it sits quite heavy some days. I miss the old me, the reliability of knowing I could just do something without having to weigh up or make a choice of what I can do today. Understanding and judging my capacity , pace myself, is something I have begrudgingly had to learn to do but I'd be lying if I said I had fully accepted those limits, it's more I know I need to do it that way if I don't want that pain , discomfort and fear to notch up. I miss being included in things, people don't ask me so much these days as they know I probably can't manage the travel to a venue or to a big noisy event without bailing early so our social life has shrunk. I still have great friends, don't get me wrong this isn't meant to be a sad post it's just one from someone who is still adjusting, still changing and can't help but occasionally looking back. I celebrate how far I have come , I really do, my consultant thought I would never work or be independant and thankfully I am able to be both but like most I guess we never stop wanting more progress, more advance. Greedy really. The thing I struggle with still is that my brain never gets fully wound up no matter how much I rest, how much I pace, how much water I drink, I still always wake tired. I'm like a clockwork toy that you can't keep wound up. In fact most mornings I have to be woken up . The family have a routine, my daughters and my hubby are all getting ready but I am left sleeping and you know what I don't hear a thing of the noisy morning bustle and then they wake me with a cup of tea It's really sweet of them and it's a gentle start to my day but with you I can share I feel guilty that I just can't manage to wake up any earlier and when I do wake I sit with what I only describe as hangover head for a while, no bounding Out of bed for me unless I want to fall. My hydro team suggest this is more the shunts effects than SAH but it's a hard legacy, a small legacy really to swallow all things considered but I start each morning with renewed reminder and knowledge of my limits for the day. Oh it's a strange thing to live with a rearranged and damaged noodle but it's is glorious to have that challenge of life and be one of the lucky ones. Onwards. Keeping hope. And singing of course.
  7. 14 points
    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 the positives now far outweigh the negatives. The bleed was an unwelcome circuit breaker for our lives but about a year or so down the track my attitude changed. I found it much better to focus on what I do have rather than what I don't. And I am much clearer about what is important in life and what isn't. One valuable asset that I didn't have pre-bleed was time because my life was so jam packed. Soon after the bleed I had time because my doctor told me to stop work. I wasn't coping due to the head pain and fatigue but was just pressing on. Bad move. However I don't think I knew what to do with the time at first. And that is understandable in the sense that I was still thinking that I was dealing with a short term problem and therefore I would be back to 'normal' in a few days or weeks. And maybe that is how it is for some but I would be surprised if that is the case. So if I had the opportunity to plan my recovery and do it again from scratch what would I change? I would teach myself to get to know my boundaries and remove all those things that have a negative impact on my recovery. And I would reflect more on who and what are most important in my life and put more energy into them. And I would more quickly accept the hand that I was dealt. And I would learn to say no. Yet again I can confirm that the wise counsel of our experienced BTG'ers is, perhaps unsurprisingly, spot on. Key for me are the messages to be kind to your brain, listen to your body, and pace yourself. I was slow to learn what these messages actually mean but the sooner one works that out the better. My recovery is a work in progress and I expect that there is more to come. But if this is as good as it gets then I am fine with that too. I figure that I have little to gain from stressing about it. Best wishes to all on BTG, especially to Karen and her band of wonderful helpers.
  8. 13 points
    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 out of the blue he told me he didn't want me taking anymore pain meds, I told him I had to take them because I was still having a lot of pain, he then told me if I didn't stop taking them he wouldn't love me anymore, as you can imagine this totally shocked and horrified me that he could say such a thing. The following morning he took all of my pain meds back to the pharmacy, telling them I no longer needed them, I wasn't strong enough to fight back, what I did do was go to see my doctor, when I got there I totally broke down and just poured everything out, she was great. She actually phoned my partner and explained to him that I needed pain relief and she was prescribing me some more, he was not to stop me taking them and if he did then there would be consequences for him, I was dreading going back home but when I got there he was fine, I don't think he expected me to tell her what he had done. Jumping forwards 10 months into my recovery, I had managed to get onto arm crutches and get on my feet, while I was waiting for some physiotherapy he said he wanted me to stop using crutches, I told him no way was I doing that because I would just fall over, when the physiotherapist came I told her in front of him what he wanted me to do, she told him no way was I to go without them, not until I was confident that I wouldn't fall. When I had my 6 month follow up with hospital, he nearly fell off the chair when the Professor said I should start to see some improvements over the following 2 years, he said " how long " years, I thought she would have been back to normal by now, that's when he was told I would probably never be the same as I was before SAH. I was so glad that he was told that because it made him realise there would be a new normal for me, well both of us actually. I hope when people are reading this they don't think I am horrible for telling this storey, I actually typed it 3 times and deleted it because I was worried what people would think, we have been together for 18 years and I love him dearly he has been my rock through all of this. He now understands more about what I can do and what I can't, I do stand up to him more now that I have the strength to do it. I know this has been a very long post, I`m sorry, but please Victoria try and talk to him, talk to your doctor and maybe they might be able to explain more to him about what your limitations are now. You will become more accepting of who you are now, like Macca said you cant change what has happened in the past, you can however be in charge of what happens in the future, start loving the new person you have become, that's what I have done and I actually quite like the new me. This is a fantastic place to come to when things are tough, it`s also the best place I know to make new friends, with lots of advice and so much help and support, it`s perfect. We are here for you, I`m sending you a big hug as I think you need one, Good Luck Love Michelle xx
  9. 13 points
    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 yours did for you" (when ill) So without our Carers we would be lost. When I couldn't hold a cup Hubby got me 2 cardboard cups, he knows me so well. He knew getting out would do me the world of good. Love to All Win xxxxxxxxxx
  10. 13 points
    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 and applauding the resilience we have to just keep on going. So happy anni-versary to me and to every SAH survivor! Xx
  11. 12 points
    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 else about that! Pointing out every mistake just makes me feel worse and makes me feel worse about myself . In fact, it makes me feel like a dummy! Please don't keep reiterating how hard this was on you as well. Yes, you had to drive long distance to visit me, sit in traffic, etc. and of course this made you extremely stressed out as well, but, telling me about all that just makes me want to say, "sorry that my stroke inconvenienced you." It makes me feel Like my illness messed up your entire life, and it may have,however, it's not like I planned it out! Please don't continue to ask me what I got accomplished today, which just makes me feel like I should have gotten a list of chores done, even if they are contraindicated with my injury. Please, please don't compare your past surgeries or injuries to mine! you can't compare and no two people have the same recovery even with the same surgery! please don't assume that just because I am sitting in my recliner watching tv that I must be depressed, even tho I may be, but there are certain people I talk to when I get depressed, and I know what to donfor hat. Most of all, please don't tell me how"cute" I look. With my new hair cut. I had my husband shave the half of my head that the doctors did not, so it's 2 inches long on one side and 1/2 inch long on the other. It is also now more gray than ever! I also weigh much more than I would like too so I don't feel "cute" by any means! Thank you all for your constant support, but please remember that my personality is different and I cannot help that! I am moody, I have to express my feelings now instead of holding them back, and none of it is personal! My moods are the same for everyone in a day! Thank you for reading this far. I will do my best to be pleasant if you can do your best to accept that this is the new me and I really have no control over that!
  12. 12 points
    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 as it was sent with much love, thanks and admiration xxxx
  13. 12 points
    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 brain stem bleed, Hydrocephalus to boot and let's just say the thought of those days still makes my family and loved friends go grey. Me? I remember nothing until I finally shifted from HDU and I figure that's a good thing because I definately remember a lot of the rest of those long weeks , of that year of further operations. My good fortune was prompt attention, amazing surgeons and angels on my side but I didn't leave the party without my scars and deficits. So now, today, how do I feel? So much is in the rear view mirror for me but I have grown stronger mentally and physically with passing days. I can do so much more but choose to respect my new limits which brings me and my brain more peace. . I carry my SAH with me as an experience that has shaped a new version and I still get frustrated with my new operating mode that was created that day but to be honest in those early days I felt so broken, well I was broken, nothing worked as it had just days before that I honestly never thought I could reach as far as I have so on the whole I just feel very privileged to be here and always find something to marvel at in each new day. And so this 5 year anniversary post is to say that. To say keep dreaming, keep looking up and forward , not to far, not to farback and just always try to pick yourself up after those shocking and dreadful 'head' days and nights that we get. Try to stay with the moment of now and enjoy it for what it is. Every day will brew change I find so be open to that and you just never know what is round the next corner. thankyou BTG for all the helping words, hands and friendships. You have held me up,
  14. 12 points
    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 who care about my welfare. Saying that , I do miss my old life and all the friends I had in it. All my losses would not have happened if my brain had not exploded that day. Do I wish I could turn back the clock? Well yes I do in certain respects but no in others.- and seeing as I have no choice in the matter I need to focus on the no's! I have a family that love me and try and understand the new me. I have a job that is less stressful in many ways, even though I need to addresss the day to day pressures. I have new friends who understand me as I am now but I do have some old friends who accept the new me too. We cannot change our destiny and although I yearn for my old life I am accepting my new life and my new 'normal'. One of the most positive things in my new life is BTG and all the new friends I have found since being a member. Thank you to everyone who has been with me on my journey, I hope you will all be with me in my future travels. Clare xx
  15. 12 points
    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 dearest and dearest to try to explain things a bit better. I've abstracted one of the points below (I didn't quite agree with all of it, but I felt this bit was particularly apt) Hope folks find this helpful Greg. ------------------------------------------ Please don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. -------------------------------------------
  16. 12 points
    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! I applaud all of you, for your support and the help that you give, despite your own problems .... You're all very special and valued. I've had the privilege to see many members move forward from the very beginning of Behind the Gray and I've watched them struggle, trying to find answers and at the same time, re-build their lives and find their new "normal"... We also have Carers on this site, supporting their partners and family and that's been an extremely humbling experience too. However, if there was one member to pick this year, for the 2016 Stroke Awards, it was our Win ....I can remember Win's daughter joining Behind the Gray and how very poorly Win was and still in hospital .... I just look at Win now and can only say "Wow!" I know that Win still struggles, but "way to go girl!" Win was nominated by Behind the Gray but unfortunately she didn't win her category ... but to us, that really doesn't matter as Win is a winner and will always be a star in our eyes! Macca wrote the following as a tribute to Win and how we feel about her .... "You are an inspiration to us all. When I first joined this site, forlorn and feeling sorry for myself, you made me realise there is life after these events and that there is always someone worse off than ourselves. Your bright and breezy, lemon squeezy attitude brightened my days then and it still does now. You always have words of encouragement regardless of religion, colour or creed or status. Also, it matters not where anyone is in the world, you are a very giving and selfless lady and you command my utmost respect. Your humour with CarolynUSA is reminiscent of Victoria Wood and Julie Walters or Dawn French and Jennifer Saunders. It injects laughter where otherwise tears would flow and that can only be a good thing. You are always pleased for improvements in other peoples' situations but never moan at your own. That is so special Win and I just thought you ought to know it. Bless you just for being you - you just don't know how much the rest of us appreciate the values and humanity you bring to us all." On behalf of the Team at Behind the Gray, I would like to wish Win, a very happy SAH Anni-versary! .... and to also thank you all, for your kindness, humour and support.... You're all truly, very special people. xx
  17. 12 points
    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 told by my GP that I am depressed, suffering from stress blah, blah, blah but ignoring or not listening to what I feel are my real issues....memory, language hesitation (verbal & written) confrontation fear, social engagement incompetence, utter fatigue and above all else "I am devoid of all fluffiness. I feel nothing, long conversations bore me, little to no empathy" So, I am probably not simply an "attention seeker" (how I've been made to feel!?!) It has been so long since my SAH (2008) & stent (2010) that I no longer believed that this & my mental state could be linked. I have found work more than challenging, my ability to cope deteriorating until I finally left in October 2015, the financial pressures and feelings of failure have plagued me since. My 3 children are now all grown up, happy, secure & working abroad, so I don't have that responsibility but the belief I am not the person I used to be has finally hit home - but how do I explain this without sounding like a 'whining child looking for excuses?' In conclusion, I would like to thank you for posting so honestly and wish you well for the 28th, hoping you get the answers, support and help you deserve and are entitled to! Your post & this thread has convinced me to tackle my GP again and ask him to take me seriously, so it has helped at least one person. In fact, I may just copy & take this with me........thank you!!
  18. 12 points
    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 lucky lucky girl , people recognised it was a brain event and I got help for what was a big SAh , grand mal seizure and hydrocephalus and i was just round the corner from the National in London . My work wife stayed with me throughout for the ambulance ride to uclh and then the national and remained until husband and mum could get to me but I just have the odd flash back but no true recall and I really am pleased as the events I experienced later on were already enough to trigger PTSD later in my recovery. It was four days before I came around properly and even then it was to total bewilderment and having ground hog day moments as to why things were so odd, and what on earth was that tube in my head for, and who are you again? Those following days are pretty clear and unpleasant to be honest but I don't dwell on those memories that often now, they played with my fears for far too long. It was a fairly significant stay in hospital , a return of three weeks for yet more surgery to have my shunt placed , no driving for 15+ months and two very sad scared young daughters ( not to mention traumatised hubbie with all my blue lights trips I had before shunt got Put in). Together We weathered a pretty big life hurricane. That year was really hard , full of pain , trauma, set backs and fear but throughout it I was loved, supported and never lost hope that things could get better. And they did. Slowly and surely I have reached my new life goal of ' steady for the most'! BTG played a big part in that process so I really do thank you all. Karen and founders for creating it, Paul and Lyn whose story left me humbled , Win whose singing reached my darkest moments and made me realise you just have to carry on and find the smiles in each day , SM showing me travel with shunt is possible, that's just a few but many of you have helped me get this far so i thank each of you for giving time to me and others and for all for the reassurances, the shared experience, the encouragement , fun comments and banter and the hope for better you gave to me. My colleagues still carry the memory trauma of that day as do I and will for ever but thankfully like my scars it has faded for them as I, we all tracked my recovery , noted my progress and in time over those four years since I have been able to regain and return in part to some of what I did previously. Tomorrow, I'll hug my girls and chap, I will work from home differently and for less hours than my old style but I will enjoy and manage it. I will smile and sing a little I expect and most of all I will be thankful for the day arriving and for that day four years ago when I Survived. I'm different today but then who isn't, I take each day as it comes some better than others and enjoy as many moments as I can. Have a happy International Women's Day everyone, I plan to celebrate this and all the other SAH woman tomorrow!
  19. 12 points
    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 was probably going to seem easier than what is to come this year. For me, I will try at some point in the not too distant future to start a VERY gentle phased return to work, but I think everyone is realistic about this. It's hard even for those close to me to get the deficits I now have. I am lucky that the deficits aren't as obvious as they could be as they aren't that severe. Some of this lack of understanding I think in part is my fault. I haven't yet, and am still not quite prepared to change my mind set, tempered slightly for sure, but I am still want to seize life by the scruff of its neck and go for it. And in those quiet moments, when the fatigue is at bay I can feel just the way I used to, not invincible but full of energy and determination. That's what this SAH malarky has taken from me (just for now!). I would be foolish not to take the opportunity that this has also given me and not make the most of it. It might be a strange way to look at things, but sometimes having the pieces of life thrown up in the air and rearranging themselves, does (if in moderation) reinvigorate and allow us to re-evaluate life, something I know a lot of which is discussed here on BTG. I have been fortunate to have the support of some great people both here (so thank you all) and in my family, friends, work and support workers. Those that really matter and care come to the fore in our lives at times like these, and for them I am and will be eternally grateful for their love and support. Not my most positive of postings apologies, hopefully reflective more than maudlin (you are welcome to give me a metaphoric kick up the backside), but it fitted the day at hand. Again thank you all. Keep well.
  20. 12 points
    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,
  21. 11 points
    It is15 years tomorrow since my life was changed. In fact it is so long ago now I tend to forget the date of the event, I have to look it up. So far back, the date has almost disappeared from my memory. Looking on the positive, my life has changed for the better once I recovered the best I could. No point in looking at the negatives, you can't change what has happened. Grasp what you have with both hands and move forward the best you can under the circumstances. May take ages just to make a little progress but determination will help. There is a future after SAH, maybe not the future that was planned but a different future. In my case I feel that my life now is much better than I envisaged pre SAH
  22. 11 points
    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 as my aneurysm was coiled. I can't remember much about collapsing or the sudden shock of pain, but I can remember and always will remember the excruciating pain that I woke up to which I can only explain as my head exploding and my entire face becoming numb. I have since found out that 3/5 people do not survive a ruptured brain aneurysm which has since been extremely difficult for me to deal with as being faced with death at such a tender age is possibly the most frightening thing I could think of. I was keen to share my story as it is extremely rare for someone of my age to have had a ruptured aneurysm, this has been made very clear to me as I can find nobody close to my age that understands what I have gone through. Thankfully my story has a happy ending and with the wonderful support of my family I was able to make a full recovery. However, I feel that I have done a lot of this alone, through this life changing process I have had no one my age or older to talk to about my experience as empathy seems to be lacking in almost everyone I know. I wanted to write this to support any young person like myself, who feels like they are the only teenager with this condition, as I know that this is exactly how I have felt and still feel.
  23. 11 points
    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
  24. 11 points
    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 think to help your understanding, it is better that they are broken down to help you find the appropriate answers. 1] You were badly assaulted. Even without a brain injury, this was a very traumatic event for you and is difficult to get over. You will have had a mixture of anger, upset and shock. You will have replayed that incident in your mind a hundred times and more. Shock usually kicks in after the event when your mind starts to wonder what might have happened, over and above what actually did happen. Stress builds because of that, in my opinion. 2] You suffered three injuries - two haemorrhages and a fractured skull. Any one of them on their own is a major trauma which could take a long time to get over, let alone having three to deal with all in the same time frame. Everybody on this site, just about, recognises that brain injuries take time to fix and that there are no instant answers. We have to accept that and so we have to adapt. Change happens, it is how we deal with it that matters. 3] You probably went back to work too soon. Not easy for you and not easy for your family, but I bet you wouldn't be told. 4] You took on a more pressurised job when really you needed a time-out to attempt a proper recovery before attempting to move on. Looking at it from outside, you probably set yourself back a bit there. 5] With more pressure, your relationships with your wife and children took a bit of a hit. These are the most important - not your work. 6] With some of the therapy sessions you probably went in too early and took on too much. It sounds to me, from your own words, that maybe you were still railing against what had happened to you and were not receptive at that time to those trying to reach out to you. In therapy you said you felt insulted. For you to engage, it is vital that the therapist fully explains the aims and objectives of the sessions in great detail at the beginning - and with brain injury at the beginning of each session - for you to get the most from them. Did you fully listen to the therapist or was your mind still arguing 'Why am I here?' with itself? Had you come to terms with your injuries and accepting that these incidents had happened to you? Or were you still fighting them? 7] Is it too late to go back and admit you were perhaps wrong to leave the sessions? Reach out to those trying to help you. In my experience, they are always willing to reach out to those who are prepared to help themselves. It isn't a matter of pride - it is a matter of getting you well again, and cognisant of the fact that you need help to get well again. All of us need help at various times, you are no different, and at times you will reach out to others in the future. You cannot change or control what has happened to you in the past, but you can accept it and then alter what happens to you in the future. 8] A big issue for you seems to be recovery time. Let me tell you that, currently, you see time as your biggest enemy, because you want to be like the old you as soon as possible. Sadly, with brain injuries, the reality just isn't like that. Time is therefore your biggest friend, not your enemy. You survived, and so time is what will allow you to address all these issues but one at a time, not all at once. Time is a healer, but it needs help from you, your wife and children, your friends and your work colleagues. But you have to let them. Talk to them and interact with them. Do it in short bursts and let them know when things are becoming too much and you need a break before resuming. They will be as distressed as you are but if you let them help you they will respond. If your bag of shopping drops on the floor, you pick up the items one by one, you don't try to pick up all the items together because you will keep dropping things again. So pick up your issues one by one, methodically, and put them in the shopping bag that is your life one by one. You will find it easier to deal with things that way. 9] Your job is obviously important to you, but your family are more important. Your kids don't care what job their Daddy does. You could be a street sweeper (no dis-respect intended) for all they care They want a happy, relaxed, Daddy that comes home to them at the end of the day, to talk and play with them and read them a bedtime story. If you have a Mercedes, they wouldn't mind a Mini - as long as their Daddy, the best man in the world, is the driver. They don't want to see Mr Grumpy. 10] Stay in touch with your doctors and therapists. Their guidance will be vital in your recovery. Work with them, not against them. You cannot be an autocrat when your result depends on what they do - you need them onside. 11] Pride comes before a fall is the old saying. It is also the wrong emotion, in my opinion, to have in this circumstance. What you need is dignity and you have that in spades. There is no disgrace in getting or seeking help from others. Your parents helped you when you were growing up. Your teachers did, too. If you ask help from others in getting things done at work, what is the difference in getting them to help in your personal dealings? The answer is 'none.' The only thing is your perception. In fact, there is a lot more respect to be gained in reaching out than in trying to go it alone. What you are probably finding is that you are like two north or two south poles of a magnet - repelling each other rather than working together to attract each other and dealing with the problems that currently, that you see, blight your life. 12] Stay in touch with us Robert. We have all had brain injuries, or know someone who has (in the case of carers). Accept that the injuries are there and nothing can change that. Resentment is a wasted emotion. The best way to fight this is to get better and you can best do that by using all the resources (doctors, nurses, family, friends and colleagues) at your disposal to get well. Help us to help you. I wish you well, Macca
  25. 11 points
    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.
  26. 11 points
    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 - you're just wearing a different coat that some don't recognise, but that's their problem not yours. You were a child once -your childhood has gone but you don't mourn for it, you remember with fondness and a smile. Do the same now. You've progressed in life and taken some new steps, that's all. The 'old' you is in a photograph album. Bring it out and laugh and recreate some of the situations you pictured. The new you is here and now. Don't beat yourself up about it - enjoy it. Life is for living, change happens, it's how you deal with it that counts! Love yourself and everyone else will love you for it. Best wishes Macca
  27. 11 points
    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 experiences, it reaches into your soul and has changed us all, all that takes some getting used to. Time helps but also so does talking about your worry. I had counselling after SAH! Once in the first year and then again when my fears intensified for no reason, I was then diagnosed with PTSD so was able to learn some techniques that helped and still help me get past that fear and feeling when it grips. Main thing Nat is when you are at you most worried is to just sit, watch and wait. like Win says if you can hum a tune, or look at a nice picture or suck a mint, basically concentrate on something small and then just notice whether your pain has shifted or moved. The reality is if we have another bleed that is not within our control anyway but trying to stay calm will help the blood pressure which is a good thing and get help. As Karen says it's incredibly rare as far as I know but the fear of it is incredibly common. It is a viscous circle, the more you stress, the more you get headaches, the more you worry, so the more you stress....try to break the cycle. Worry is normal but in the end it will change nothing . Sorry if that sounds harsh, I really do get it but I have had to let my worries go( and they can still grip me four years on ) Yes my shunt could need replacing or block, yes I could re bleed but I could also fall down the stairs, get knocked down by bus, worry won't keep me safe, you get the picture. Life is for living lovely lady. Yes In an adjusted and different way but we have to choose to accommodate our new fears and knowledge of our fragility and then we can smile more broadly and enjoy our days. Go talk to someone x
  28. 11 points
    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 see, I'm not quite ready to say good bye to that quite yet. I think one of the things that I have gained, is a perspective on all the really good friends and people locally that have come forward more in my life thanks of this SAH malarky. Anyway, I've side tracked myself. I logged in tonight as I wanted to wish everyone here all the best for 2016. This time last year I had no idea what SAH was, but in just 20 days that was all about to change. I've have had the fortune to meet a great bunch of people here at BTG drawn to gather through our experiences. I may not be a regular inputer to the discussions but the support both in just being able to read what other people are going through and in participating in some of the discussions has been some of the most important support over the past year. Here's to a happy and healthier 2016 for us all Cheers!
  29. 11 points
    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 I wish it were under different circumstances. Take care everyone xxx
  30. 11 points
    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 working with them and who give me the respite that I need too!.... I've personally met a few of them and I can tell you, that they are an inspiration and continue to be so and that helps drive me forward with the site ... xx Without the help that I have, I couldn't run this site alone now. I would also like to thank (if they're looking in) the Moderators who helped me in the early years and to Keith (Bogbrush) who helped me with the Admin and who also helped to develop the site and kept me sane...as I probably wasn't very sane post SAH! Love and thanks go to Chris, my son .... and without him, this site would not have been born ... and to who, I still go to, when things go wrong with BTG and I don't know what to do!... Bless him, as he sorts it out for me ... I couldn't be any prouder of either of my children, as both Chris and Lauren have supported me with this site and still help me on a personal basis when needed. Love them both. x Well, where to start? I can't say that it hasn't been a tough ride for me....because it has. I still have some bad days, my aneurysm isn't totally fixed and I'm monitored... I still have problems with fatigue, but life is pretty good and it's what you make it. I never managed to return to paid work in the same capacity that I did pre-SAH, but managed to do temporary work. I also think that I made a choice not to return to that lifestyle or try to juggle so many balls. However, if anybody gives you that 3-6 month rule, as in being totally okay, going back to work or that's all the recovery that you will have .... well, all I can say is, it's totally rubbish, but I respect that they have to give you some sort of timeline. I'm still experiencing recovery 10+ years on .... I'm also getting older, which you have to factor into the equation, experiencing the menopause that comes with being in my 50's and which also mimics the SAH aftermath with it's symptoms .... so it's a double whammy at the minute. However, I'm doing much more than I did this time last year. If it puts anybody's mind at rest, we haven't lost a single person on this site who's been operated on for an aneurysm or suffered a non-aneurysm bleed (NASAH) .... well, not that I know of in the last 9 years!....so, please don't waste time worrying and I hope that you take comfort from this fact and go and live life. It took quite some years to restore my own confidence, but time is a great healer and I'm okay now. Over the 9 years of BTG being in existence, I'm still reading the same problems and I find it so frustrating. It's often a postcode lottery as to what help you will receive in the UK. Don't suffer anxiety or if you're feeling low and a bit depressed, please go and see your Doctor. You don't have to endure it, seek help. If you don't ask, you don't get and the earlier that it's treated, the earlier you will recover. Not everything is down to the SAH fallout, so please always seek medical advice and don't suffer. A big thank you to all of you, who support others on this site with your own experience and I know that it's not easy, but much comfort is received ... and it's great to see so many Carer's on the site, offering support too! I really wish that something like BTG had been in existence when I was in my early months and first year of recovery. I think that the support and knowledge would have perhaps helped me to heal a little faster. Keep well and love to all. xx
  31. 10 points
    Once of the most distressing things for me post SAH was my ability to cope with cognitive demand and sensory overload. It was painful. In time that’s passed since, 7yrs, I have learnt more about my triggers but also how to pace and rest in ways that’s right for me but I still know flooding can and does happen. I still wear sunglasses and earplugs on many occasions and still alway carry them. lots of people come to site and struggle with the sensations and how this feels And I think this is a great education video that explains it credit to Northern Brain Injury Association
  32. 10 points
    Wow! Where did the time go! 8 years and I'm still here! 1st September 2010 changed my world and my gratitude to everyone who help save my life and rehabilitate me is as great today as it was at the time. I've also come into contact with so many wonderful people through this site who have helped me and to whom I have tried to pass on some of my own experiences. The bottom line, though, is that I survived and continue to live my life with optimism, grateful to many people and the progress in life sciences that makes it all possible. Thankful that I live in the 21st century! Oh - and six years ago today, I got married to Sandra = another reason to celebrate!
  33. 10 points
    Hi, my name is Kayleigh and I had a SAH on the 6th of March 2017 I’m still very much trying to come to terms with what happened, most of the time it feels like something that happened to someone else, that it’s not 100% real for me yet. I found out about BTG from ‘A Dented Image’ by Alison Wertheimer, which I’ve found extremely helpful. Ok, so on Monday 6th March at 7:30 in the evening (a time and date I think I won’t ever forget) after rather stupidly slicing my finger open on a tin of chicken soup I pass out in the kitchen. I have no memory of the event and what happened next (which in hindsight I’m quite thankful of) as according to my Fiancé I was seizing on the floor with my eyes rolled back, one arm sticking rigidly up into the air, half of my face drooping and being violently sick (I think these memories may have scarred him for life) I’m then taken in an ambulance to my local hospital where I have a CT scan, apparently I’m awake at this point and answering questions, but I have no recollection of this. The first doctor to see me says they can’t see anything on the scan, that it’s just concussion and tries to discharge me, my Fiancé is not happy with this and so has a talk to the nurses there who are also not happy with that decision and refuse to let me be discharged, another doctor then comes on duty and has a look at the scan and immediately has it sent over to Queens Hospital for their opinion, who ask for me to be blue-lighted to Queens. ...... I’m actually finding this really hard to write about, there’s just so much, it’s hard to judge what to include, what to leave out, so for now I’m just going to post what I’ve written up to now and follow up later with the rest Updated on 14/01/2018 I realised earlier today that I'd never completed this. Thankfully I found my notes so this is my original SAH part 2 The CT scan I had at Basildon apparently showed that I had blood on the brain. I wake up the next day in Queens Hospital, I’m not at all surprised by this, and my immediate recollection is of cutting my finger open on the tin the night before. My memory of the following week is very fragmented. At first it was assumed that I’d passed out from cutting my finger and that I’d then hit my head and that was what had caused the bleed. That my brain would then just absorb the blood and I’d be able to go home in a few days. I didn’t eat much in the first week, everything tasted foul to me, especially this jacket potato I had (having read up on it I realise now that the bleed had temporarily affected my taste buds) I had an angiogram on the Wednesday to check that everything was going ok. On the Friday a doctor came in to tell me that they’d been looking at the angiogram and original CT scan and that they believe I had an aneurysm that had ruptured and that they’d like to take me in to surgery as soon as possible. I remember feeling quite numb and calm about it all. I asked him if I could just ring my fiancé because I’m only half taking in everything he’s saying to me. He was lovely, he gave me his mobile to ring Joe and then he explained to Joe everything that was going on. I remember before going in to surgery that someone came and marked a cross on the side of my neck near my jaw line so I was very surprised to wake up with a line of staples down my centre parting. They originally wanted to coil the aneurysm and that was what I was told they were going to do. I went into surgery on the Friday. They couldn't coil it though, at the time we were just told that the coiling failed. I only vaguely remember coming round and being informed that the coiling hadn’t worked; I think it was something to do with the location of the rupture (it was very difficult to get to). So I had to go back into surgery on the Saturday to have the aneurysm clipped, which was successful. (I only vaguely remember later being told that the aneurysm could only be partially clipped because of these blood vessels coming out of it). I don't know if it was the double dose of anaesthetic in such a short space of time, but I don't remember the time in between the surgeries. I was very groggy for the next week. Apparently I repeatedly asked things over and over again (I don’t recall this at all). When I woke up I kept asking over and over again about the staples in my head, I do remember being very curious about them, I just wasn't expecting them to be there and so was utterly confused and fascinated by them. I found it very hard sleeping in the hospital, even as a child I’ve needed complete darkness and silence to sleep (I can’t even have a ticking clock in my bedroom) so sleeping in the hospital was a nightmare for me I had ear plugs and a sleeping mask. The sound of the drip was driving me insane, so one of the nurses figured out for me that if I drank 5 jugs of water a day then I wouldn’t have to have the IV. I also recall that my sense of time completely went out the window; 10 minutes felt like an hour, it was so bizarre trying to keep track of time. I had to wear sunglasses most of the time because the light hurt my eyes, I could barely open them The side effect of the Nimodipine was that I felt warm all the time (this just happened to coincide with a very warm March) so I was constantly asking for the window to be opened, one night the wind was blowing so strong that it brought the blinds down, and so of course everyone was joking with me for ages that it was my fault. Now I have suffered from anxiety for a long time, I've even been on medication for it, but I was the calmest I have ever been, which I thought at the time was strange because this is probably one of the most stressful things that's ever happened to me. But I was completely calm even serene. After watching Jill Bolte Taylor’s TED talk I now understand possibly why this was the case. I was discharged on the 24th of March, which means I was in hospital for just under three weeks.
  34. 10 points
    To my mind there are three stages to SAH 1) Cause 2) Treatment 3) Aftercare What happens in most cases is a ruptured aneurysm - Why? We don't really know, and so we speculate ie poor diet, (alcohol, tobacco included), stress - which cannot be measured but is believed to be a factor in a lot of cases, and various other things too. We seem to lack concrete data on all of these things and more research is needed for sure. Treatment, thankfully, is the best of the three categories above. At least we are now able to save many patients who make it to hospital in time. Aftercare is the biggest let down, for me at least. Issues around returning to work, re-evaluating your life, re-learning life skills, relationship matters, dealing with abrupt change, looking at the 'new' you, how to deal with people who can't see your injury and think you are alright, and the rest.. That's where this site has proved invaluable to so many people. After the clinical issues are resolved, that is where the authorities let go of the patient, and then the residual physical and mental issues kick in, with very little means of support, if any at all. As usual, they trot out the lack of cash available line, but there are things they could do with minimal input. Setting up support groups, providing more information online for patients and their families, utilising the experiences of previous patients and the like. Providing information for carers and just letting people release their anxieties would be a huge step forward. Step forward and take a bow BTG, currently filling a massive, massive, gap not catered for by the NHS.
  35. 10 points
    HI Phil A warm welcome to BTG glad you found us. As Subs says what a traumatic series of events you went through though I do think you were luck to have got back to the UK before a proper diagnosis and treatment. God know how long you would have been stuck in Mexico. I'll respond to your questions by number if thats ok. 1. Work, you say you are back for 30 hours a week, hopefully that was on a phased return. Your bleed was 7 months ago, at the same point I was probably about where you are now. I eventually made it back to 34 hours and that is all I do now. But it is spread over 4 long days, 9-6 with half hour for lunch. I work Monday Tuesday Thursday and Friday with Wednesday off. This was a conscious decision as I felt I needed the rest in the middle of the week to recuperate. I am now 2 years down the line and STILL need that rest. There is no way I could work 5 days a week for long hours. I find that if I overwork my stress levels increase and the fatigue gets worse. You may get back to full time but be prepared not to and really think hard about that. What is more important? A good work life balance is best for those post SAH as stress really does affect you after your brain has had a battering. 2. SAH has stolen part of my memory. I too had a very good memory pre sah and was known as a walking phone book. I can still remember all those old numbers but try and remember a 4 digit key pad code for where I work - took me weeks and I still know it by pattern rather than the numbers. Memory problems often get better in time but you may well be left with some deficits..I have had a neuro-psychology report and test done for my memory and they show some slight deficits mainly with working and short term memory. You will find methods of coping with this, I use my phone a lot by putting notes on it to remind me. 3. Stress affects us all in different ways. I find now that stress cause me to become a lot more emotional about things, very teary and unable to cope. When I get fatigued and stressed I find I lose words and forget what I am saying part way through a sentence. So keep stress levels to a minimum if possible. I have been told that the chances of me having another SAH are the same as any other member of the public. Mine was non-aneurysmal though and I believe yours was an aneurysm. If you have had follow up MRI's and been given the all clear then I believe your risk is the same as mine. I do not think it is worthwhile worrying too much about the chance of having another SAH, just embrace the fact that you survived this one. 4. Normal? What is normal? I think I am still finding my new normal now. Headaches, tiredness and fatigue are all the legacy of a SAH, they do get better in time you just have to learn to listen to your body - and brain- and slow down when they tell you to. Take your time, don't push too hard to increase those hours and take stock about what is important to you. Hope to hear more from you her on BTG. Clare xx
  36. 10 points
    my dearest friends after yet another hard day with lin which I will go into later because when I got back to the flat there was a fairly large box outside the door addressed to me but with the logo of moonpig .com on opening it knowing that I hadn't ordered anything and the fact I didn't know anyone who would send me anything and discovering a wicker hamper type box containing a hamper of fudge biscuits tea and various other items and looking for a card just in case it was not for me to discover a card from the team from behind the gray I felt shocked and extremely humbled and embarrassed that friends from behind the gray would think such a lot of me to do this beautiful thing the message means so much and the reason of feeling so humble THANK YOU ALL SO MUCH yes im embarrassed but also very warm inside for your kind and beautiful act of kindness which was not expected but shows that you are all beautiful people massive hugs and cuddles bless you all and thank you for all the support you have given me and lin I think that's all I can say at the moment I will enjoy the contents bless you all update things haven't changed much as of yet I will ring the professors secretary thurs to find out what is happening it is so heart-breaking to see lin suffering so much and even with all my medical skills I cannot take the pain away but I have to sit and hold her hands and try and settle her down which seems to work some of the time one thing I have learnt is that the neuro stimulate being used just stimulates everything within lins body not just the brain I think one thing that's being stimulated is lins bowel that's gone into overdrive I asked that the gp ordered some buscopan to ease the cramping which has worked to a certain level but the cramping continues we have worked out that if we took a certain action lin is compliant and it removes a certain amount of cramping but it returns a few hours later we have discovered that we don't think it is epilepsy but when the pain levels get to much lin is driven over the top so the main problem is working to recognise that period before it gets to the flipping out stage and take the appropriate steps which seems to be working lin is going to see the neurologist next week as the botox really needs topping up and we hope she has heard from the professor and do her shoulder and hopefully she will come up with something that will help with the cramps that is where I believe the main problem lies all I would love to have is lin out of pain and to reinstate her progress love to you all massive hugs and cuddles from both lin and me xx
  37. 10 points
    Deb bless you. I know exactly how you feel - that was me ten years ago. I didn't like the new me at all - in fact I flaming well hated her and her limitations, but this is all about adapting and learning what you can and can't do right now. Things may improve and you'll get a bit of the old you back. I love reading so was gutted that I couldn't read because I couldn't remember the day after what it was I'd read the day before, but I got there. I love the new me now, I don't sweat the small stuff anymore and try not to do everything at a million miles an hour. I've also finally learned that patience is indeed very much a virtue. I know it's hard right now, but accepting the new you and your limitations and adapting to them will help with recovery. You've done the hard part - you survived. Now you need to recover and that can sometimes be a long road with ups and downs along the way - but take as many pit stops as you need to to get there. Please see if your GP can refer you for counselling - it helped me better than I think any pill could have. It's good to off load your feelings to someone that you have no emotional investment in. We're all here for you hun, but please get professional guidance too.
  38. 10 points
    All of us are different in our bleeds, our experience is unique to us which is one of the trickier things that comes with our new found adjustment to the new state of us. Yes we can compare, we can definately learn from others having trodden a path before , BTG is a sanctuary for that but at the same time we have to work out our own possibilities within our own recovery. I had a pretty major bleed, level 4,complicated by hydrocephalus which then returned after a length stay requiring even more surgery to bring the permanent additon of a shunt into my life equation. The prognosis once I left hospital was pretty much " just do what you can" and so ever since then I have tried to figure out what that "can " is. Working and the return to it at the capacity I had before has proved impossible for now especially keeping the balance of home life with two young daughters so I do it differently these days but I think just being curious about what might be possible in a new way has been helpful. We all know about regains , or retrains as I now think of them , and we learn about pacing, about spoons and we make sensible decisions every day about how doing something might mean not doing something else. Thing is whilst doing that I found I was becoming less open to stepping outside my comfort zone. So the further I stepped in my recovery , the steadier I was becoming the less I was likely to rock that boat so this week I rocked it. I really pushed myself physically and cognitively and whilst I couldn't do the entirety of what I set out to do I learnt a huge amount on the way and feel a little more positive as well that this recovery of our is definately something I'm on for the rest of my life and that it's kinda cool that I get to understand and really try different ways of doing things. I havent been been online for a few days as of course the efforts of my adventure wiped me out totally but that was worth it and I 'stopped' before it became painful. And I mean I really stopped and switched everything off. My mum even brought meals on wheels whilst I rebooted. So that's what I wanted to share. We get to know our traffic lights system , our Red Amber and Green moments and I guess I wanted to say pay attention to them all but always listen to the red and then at that moment really do stop because then you will be able to go again when the green comes around. And who knows we may go even further ? If anyone wants to know what I've been up to they can check out my blog , link is on my profile page. Go steady and keep being curious everyone to your new possibilities and of course always keep singing. I did a fair bit of that this week Win.
  39. 10 points
    Yesterday it was a year since my SAH. I couldn't post yesterday as I spent the day at North Staffs hospital having scans, not the best way to spend my special day, just an unfortunate coincidence. I should know in a couple of weeks how my unruptured anni is doing. One year on is a good time for reflection. On the good days I can be positive and look forward I don't have so many 'why me' and 'if only' days . It's been a difficult year. In many many ways I've never felt so many different emotions! I have an amazing partner, he is so supportive and patient (yes, he needs to be very patient) this has been particularly painful and difficult for John as his Mum suffered a brain haemorrhage when John was only 8years old sadly his Mum died. I think that having reached the one year mark I can start making plans and decisions about the rest of my life I need to grab this 2nd chance that I've been given with both hands (well perhaps not with my left hand, it's still quite weak!!!)
  40. 10 points
    Well here I am, 1 year down the line and glad to be here. I often wonder if I had not gone running that night if I would have had my NASAH, something I will never know. What I do know is that this event in my life has had enormous consequences for me, some good, some bad but mostly positive. When I parked up that night I could never have imagined that I would not get behind a steering wheel again for 9 months, that I would not work again for 3 months and that the following day I would undergo a lifesaving operation. All a little hard to believe now but true all the same and I am eternally grateful to the people who saved my life. From the running group leader who suggested an ambulance, the sweet ambulance girl who was so understanding to the Surgeon at Wessex Neuro who I don't actually remember! Through all of this year my family have been fantastic and we have all become closer. Strange how events such as this bring everyone closer together. You find out who is really there for you and sadly who is not. I am about to embark in a new phase of my life with a new job in the near future. I will find out if my rearranged brain can cope with learning new things. I am sure I will forget peoples names and where the toilet is but luckily I have my son working with me so will have to rely on his help! I know I am lucky to be alive and celebrate that fact today and everyday. I also know I am lucky to have found Behind the Grey and all the wonderful people within it. My husband bought me flowers and wrote me a poem today. So sweet and caring, he knows what a big day this is for me! Clare xx
  41. 10 points
    Im 27 and suffered my SAH in June 2015.....what a shocker!!! I have amamzed my self, family, friends and also my consultant!! I was back to work full time by The middle of Aug 2015 ( though I wasn't allowed to do a lot) head aches gone and finally was starting to forget about my illness My MRI scan in December six months after my SAH was as they wanted, I also have another one which they are monitoring every 18 months. So I have another 18months appointment free! I'm now back driving It was like I never had it, I can not believe how much has changed, this time last year I never knew of my SAH. I never thought the day would come were it would not cross my mind, I can go days without thinking about what happened. In such a good place right now! Though don't get me wrong I do play on it with my boyfriend when It's my turn to cook lol!
  42. 10 points
    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 aneurysm which was large was successful coiled later that week by a marvellous team whose care was second to none. I remember the angiogram and lying on that what I can only describe as an "ironing" board - not great but knowing that that amazing technology would be what could either save or end my life. I have to say I was thankful when they did the coiling I would be sedated. What a lot I have learned both about me, my family and friends. Seeing my son fly from Akron to be with me was excellent as I worried I may never see him again if coiling went wrong, my daughter came with me to the emergency ward after I was sent there by GP. They were terrific support, my husband and sister were amazing and bless they really have had the most to deal with as have been the brunt of my roller coaster of emotions. This site has helped enormously offering an understanding ear, a safe place to share feelings and of course some fab singing and small insight into other people lives. Today I am going to enjoy that I am alive x
  43. 10 points
    Hello, Thank you so much for the incredibly friendly and warm welcome, I'm touched and grateful. It’s great to speak with people who understand. I look fit and healthy and appear to be absolutely fine to most people so, quite understandably, most people don’t see there is any problem at all. I was treated in the Royal Hallamshire too Sarah and agree the care received was very good. My friend is the senior training staff nurse on the neuro-HDU ward, so I was lucky to see a friendly face when I was in a bad way. I greatly appreciate all your support and advice and for being kind enough to share your experiences. It has really helped to hear of similar events and feelings and I don’t have the words to express my appreciation. It also helps give me some perspective, however, I do feel sad (and a little guilty) that many people have had a more difficult time and are still living with issues, that are worse than mine. After my first hang-over free New Year’s Day in over 30 years, I made a resolution to be more patient and to get back on track with my plan for physical recovery. Thanks once again, Neil
  44. 10 points
    Hi All I haven't posted for a long time. It's seven years today that my brain exploded and last week I graduated from the Open University. I know I'm an extremely lucky girlie and just wish to say that there is hope, new directions and opportunities. Lorraine
  45. 10 points
    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 to Karen, the founder of this site - what a marvellous innovation it was and what a hole in after care it filled and continues to fill for so many! I look forward to the next five years - at least! Best wishes everyone! Macca
  46. 10 points
    Clare. The neurophyscologists I saw post SAH explained a little to me as I still experience the feeling you describe even three and a bit years on. When you have a lot of sensory input, background noise, conversation, bright light, it all takes processingpower but ours ability to do this efficiently is damaged. To varying degrees for us all but it takes extra brain energy to do any cognitive work combined with that sensory overload. So when you run, you just run, it uses up physical energy but gives you chemical releases that make you feel good and you probably switch off and relax your brain when you run. When you are at work, you concentrate, you have competing sensory sounds and visuals and the brain is overstimulated against a background of damage left by bleed. Then the horrid chemicals kick in because you feel dreadful and it is a nasty outcome of feeling rotton to say the least. So there you are, my best explanation of why you may find some things wear you out more than others. It may get better, it may improve, it may not. My best advice is for now you need to find coping mechanisms and tips and techniques that work. Figure out what effects you and then out in place pacing and adaptations to make adjustments, you can't be the same as you were, you have to find a new normal. For instance I wear sunglasses in business meetings and whenever I travel places or shop and people who know me understand. I have ear plugs which allow me to block background noise but hear a conversation with the person I am with and more importantly I take 5 minute breaks frequently when I am just still and quiet. So I work a longer elapsed time overall but have more frequent breaks agreed with my employer. If I didn't simply put I couldn't cope with the effects. It's great you have been able to return and run similar to before, cherish and celebrate that achievement and be patient and kind to yourself with the working. Just because you can't see the injury it is there. I'm sure if you had a bad case of sun burn you wouldn't go sit in the sun the same way you used to without changing habits a bit, the same applies to a brain bleed.
  47. 10 points
    Xmartz, I'm another that's been down the same road: "You're looking well, like there's never been anything wrong with you." "I forget things all the time." "Pull yourself together man." "Just get on with it, there's nothing wrong with you." "You're tired - wait till you do as much as me, then you'll be tired." "You should be better by now - are you just making an excuse?" I've had all of these and more. Change is an inevitable part of life. I've put on weight and become more grouchy at times, but it's how I am now. What reason do they have for being grouchy? I make mistakes but I have a reason for mine - do they have a reason for theirs? SAH is our change and others have to accept the change and adapt accordingly or move backwards whilst we move forwards. I like me, always did, always will. If others do too, that's a bonus. If they don't that's their problem, not mine! Well done for speaking out Xmartz, I dine at your table! Best wishes, Macca
  48. 10 points
    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 site going xx and I like chocolates xx hint to start saving ha Love WinB143 xx
  49. 10 points
    Hello all my friends on btg. Thanks for your good wishes. Most important thing - other than that obnoxious - lol surgery is that Macca made me an honorary brit! Wow! I think the surgery itself was great. My doctor said it went well and I trust him completely. My veins gave them trouble as they are very hard to find. I saw a note from anesthesiologist stating that they had to start an iv multiple times. Anyhoo..After coming out of recovery and anesthesia I found out I had to go back to 7th floor where I started after bleed in June. I cried all the way up. Who wants to go back to the place where you almost died? Not I. They threw me into a bed and made me lie completely still for 10 hours! Soon my back hurt and then my shunt hurt from the pressure of the pillow. So they kept adding more pain meds. All in all it was semi-ok and I used all of my wiles to make me able to come home. So, by 11:am I was home! Yeah! Far out! Groovy! (for my Win). For Keith - Inagodadavida! For Keith - I did get a chance to eat my only favorite thing at the hospital - roast beef with gravy. It was good. Oh! One more thing! The nurse was going to change the dressing on one of my IV's and blood shot out all over the room. She forgot about the plavix and aspirin...oops! It was all good though. So...maybe the pipe will help and, once again, I thank you all for good wishes. It means a lot to me. Will talk to you soon. Keith said I shouldn't overdo it so I think a nice lay on the couch might be swell (Win - from the fifties) Carolyn
  50. 10 points
    Thanks everyone for your kind words ,I'm so much better thanks and all symptons have now cleared ,I'm even going for a drive today as I've been allowed to keep my licence ,covered in bruises from the blood thinners but two and a half weeks on I'm feeling fab ,thanks again xxxx
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