Macca

Daffs, I totally get that. Brilliant though doctors are, I’ve not heard of any that have suffered a SAH other than one in the US who wrote a book ‘My Stroke of Insight – A Brain Scientist’s Personal Journey’ by Jill Bolte Taylor PhD. (ISBN 978-0-340-9805-7). After five years I still have fatigue and have plotted the new path of many things that I once took for granted. I now put up with comments about my short term memory such as “That’s your age” and “We’re all like that at our age.” Except that we’re not. I know the difference because I know what I was like before. They don’t mean anything by it, I know, but deep down it stings and it means they now see the way I am as the way I am, not as I was. The old me, to them, is a distant and fading memory because this is the here and now. Sometimes not only can I not remember events but I cannot remember the discussions about them let alone the contents. That is frustrating. I wake late and for my family, it has become the new ‘normal.’ Like you, I deal with it but I don’t accept it. I deal with it because I have no choice and because I want to get on with life, not sit moping about what might have been. There’s no point, because this is how it is. Doesn’t mean I don’t think about it, but I don’t whinge about it to others because deep down I know it’s five years ago and they don’t want to hear it any more. That’s ok for them, but I live with it, as you do too along with so many others on this site and those who visit it. I am happy that I am alive and that I can watch my two sons develop their family lives and my grandchildren grow. I am happy that I can continue to enjoy the company of my wife, a continual source of joy and inspiration to me. I marvel at the skill and craft of the doctors and nurses who saved me. However, despite what they say about the effects afterwards, and for all their brilliance, their knowledge comes from critical analysis of clinical procedure, data and of talking to people who have had a SAH. It is an external knowledge, not the internal knowledge that we have as the experiential consumer from within. It is this experience that makes the vital difference between those ‘who think they know’ and those ‘who actually do know’ and therefore ‘get it.’ So have a moan Daff, then chin up and get on with it, because it’s like the Second World War, - we all know it happened but we can’t change it and we have to make the best of the future! Good luck, Macca

I would check the policy for terms and definitions. Then get a letter from your consultant that, hopefully, compares favourably with those terms and conditions, in particular with regard to long term effects and re-submit. Choose your words very carefully and even consider consulting/using a solicitor specialising in medical cases if necessary.if only to get an opinion. It may cost a little in the short term but the longer term benefits may make it worth it. Good luck, Macca

Hi Geoff, Welcome to BTG! Your health comes before your job as without the former you won't have the latter, so don't go too fast too soon! Take care, you've done very well so far, and don't beat yourself up if you have the odd setback as that's a fairly usual occurrence too! Best wishes, Macca

Absolutely wonderful Lorraine! Absolutely fantastic - determination effort and application! Just absolutely fabulous! Very well done! Macca

Luke - hi and welcome to BTG! This is very early days for Mum. Let her do things at her own pace, not yours (because you want to see her back as her old self asap - it doesn't work like that) Encourage her but don't demand of her. Help her but don't patronise her. One step at a time. Rest is probably more important than activity at this stage, so when she wants to stop, let her. Visits from other people - limit them as much as possible (both in time and numbers) in the early stages - they can be very tiring for Mum. Just be there for her and return some of that unconditional love she's been giving you all these years! Good luck and best wishes. Macca

Hi Sonia, What is normal? How long is a piece of string? Normal is what you are now -it's just a little different to what you were before. Change has happened abruptly and you have to learn how to adapt to it and embrace it as the new you - -at least until your recovery improves and you get back as near as possible to your previous benchmark 'normal.' It will take time, and six months is still very early days. As you age, change happens slowly and you adapt to it without thinking. However, it is a shock to the system when change comes at you suddenly and without warning, as with SAH. However, with the support of everyone around you, life will get easier again step by step. Accept the challenge, start the recovery journey and over time you will be amazed at the journey you make. Good luck Macca

Hi Bill, A very warm welcome to BTG. Behind every good man there's a good woman. What a great relationship you two have. Yes your story is a familiar one, but you are a partnership -alone you may struggle - together you will thrive! An event like this in your life puts things in perspective and makes you truly value the importance of family life - much more valuable than material things! Good luck to you, sir, and keep posting! Macca

Thank you SarahLou, I am truly humbled by those kind thoughts! Macca

Hi Sammy, I don't have a shunt but I was coiled five years ago. I have flown about 20 times since then, both short haul and long haul without any problems. Pressurised cabins have not caused any problems for me. I actually have more problems on the ground with ordinary barometric pressure changes, in particular with drops in air pressure which produces 'muggy' feelings and sometimes a low thumping type of headache but nothing serious. Perhaps others who do have shunts will re-count their experiences for you. If you have any doubts speak to your doctor before you plan your trip. Best wishes Macca

Wow Carolyn! Thank you so much. I have tears in my eyes writing this, my own ordeal seems almost insignificant compared to yours. We all look for, and need, support and our respective health systems don't seem to provide very much of it so we have to do it for ourselves. Do you know, though, it seems that we're probably the best people to provide that support because we understand - really understand, what people are going through? You also provide a lot of support and throw in a few laughs along the way, and remember, I saw the Brit in you! You have the courage, the guts and the understated, but steely determination to succeed in whatever you do. It's a pleasure to know you and to continue to support you in your continuing quest for well-being. You have your feet on the ground and a pragmatic approach to life that stands you in good stead. Keep going Carolyn - and I promise I will even listen to you sing with Win (Lol Win - only joking), if I have to, if it means the sun continues to radiate from your core, so it brings sunshine to all of those you touch (metaphorically speaking of course!) for many, many years to come! Thanks again Carolyn, I am really touched by your kind words, Macca

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

Paul, Print these posts off and show them to your doctors. They will explain better than you will on the day what your fears really are and they will be better able to help you. You said above "That's maybe a weakness, but then maybe also a strength." That's your first positive - maybe you are turning the corner now after all! Five years ago today I had a SAH. I survived - so will you! I'll give you another Winston Churchill quote, and one which should resonate with you. He said "It is not the beginning of the end, but it is, perhaps, the end of the beginning." Your new phase of life is to accept the shunt , let it do its job whilst you get on with yours - enjoying and making the most of your life. Best wishes Macca

Hi Paul, You mentioned earlier that you thought the shunt was like a replacement part in a car. So think logically. If you expand that and think of your body as a car - it came with a lot of parts, heart, lungs, liver, kidneys, eyes, ears and so on. Over time some of those things fail - ie your eyes get worse with age - so you get glasses, your hearing gets worse so you get a hearing aid, even heart, lungs, liver they can replace these days, you have a SAH, you get a shunt! It's more likely that another part will go wrong before the shunt does, so it doesn't really make sense to just focus on that. In all these cases, the car is repairable and is not a write off. Neither are you! Now with your shunt you will be able to do pretty much what you did before, in some cases better or differently. You are a young man - yes you've had a jolt, life has made you think about things differently than you did before and probably before you wanted to - but you know what - you've now got something many others don't have and that's experience and knowledge that you can use to help better your own life and those of others who don't have your experience. Some people go a lifetime and never get that! So turn what you see as a negative into a positive - lots of people on this site have shunts and they're still going strong - so will you. Life is full of opportunities - if only you look for them. You are an intelligent guy and sometimes that makes you think too deeply and that can make you dwell on things. If you start to get out there and make yourself active, that will distract you from thinking about shunts, improve your confidence and over time your belief in yourself will come back. Your brain is working Paul, just look back at your posts - they are thoughtful and rational and detailed. All they lack is a little positivity and that's natural after a SAH. It takes some time, though, as all recoveries do and if you read some of the threads in this forum you will realise that. You're just on a 'time-out' right now. So don't be hard on yourself, don't beat yourself up, if you fall off your horse you get up again and get right back on it, don't you? You are a survivor Paul, you have youth and strength on your side - that's something some of us don't have. So use it wisely and embellish your life with the love and support of those around you to a level where you reward them for their unconditional support for you by becoming well again. Remember that saying - it's not what my country can do for me - but what I can do for my country! if you substitute the word family for country, you'll get where I'm coming from! You're doing wonderfully well Paul. I mentioned a quote by Winston Churchill (Our World War Two Prime Minister) on another thread the other day. He said "When you're going through Hell, keep going!" In other words, when times are tough, if you keep going, better times will return - that's you Paul - you'll be just fine! Good luck Paul - stay in touch! I wish you well! Macca

Paul, Don't worry, my daughter in law has a shunt and has had it since she was little. She's 32 now and hasn't had a problem. The only thing she had to undergo was a replacement procedure because she had out grown the small one they fitted as a child, as she turned into an adult and she needed a larger one. Yes ask your doctor questions, but don't let it rule your life. It is in place to help you get on with life not to hinder it. Get out there and enjoy things. Good luck, Macca

Skippy, I wish it was under different circumstances too, but given that I had to go through the experience of a SAH, the golden thread that went through the silver lined cloud, was meeting all of you on BTG!! Many congratulations on reaching this fabulous milestone! Macca

Elizabeth, I suffer fatigue most of the time and headaches sometimes. I find the best way of coping is to do things in short bursts and then rest in between. Resting is as important as working. This way you still get things done, you are less tired and your body gets the respite it needs to carry on. It's only a small adjustment but one which pays dividends for me. It also means he will feel of value and it will break up his day if he can do things over a longer period. It may mean he even does them better as doing things more slowly usually means better quality. It's just a different way of looking at it. Good luck, Macca

Hi Andrea, You were lucky to be conscious when you went in the air ambulance - I was unconscious when I went and it could have been a canal barge for all I knew! Anyway, welcome to BTG. The best part for you is that they have identified the problem and are able to keep an eye on it. Take care in your recovery and don't try to do too much, sometimes your body can lull you into a false sense of security and then let you know in no uncertain terms that you are going too fast for it! Good luck, keep us posted and be gentle with yourself in the meantime! Macca

Hi Kris, Congratulations on getting this far and on still improving! I'm not at all sure about wanting to re-live the experience of a SAH but I understand where you are coming from in terms of the insight it has given you. Given your previous occupation I can see how that would fascinate you. Nevertheless, it still leaves you with decisions to make about how you spend the rest of your life. Maybe you could think about how to turn one of your new interests into something you could make cash from. Could you become a lecturer in neurophysiology and relate it to the SAH experience? Only thinking out loud! Can you draw/paint? Could you frame some of your own art and sell it? Could you run yoga classes and charge your customers? You would only have to do them when you felt like it, not necessarily as a full time job. Whatever you decide, good luck and once again, congratulations! Macca

You're welcome Paul! Our World War II prime minister Winston Churchill (remember him?) once said "When you're going through hell - keep going." In other words It might be bad at the moment but if you keep going, it'll get better! Great man our Winston - Keep going Paul! Patience is a virtue! Macca

Hi Paul, Welcome to BTG. A lot of us seem to be able to remember the events leading up to the SAH, but not immediately after and we all seem to rely on what others tell us we did. In my own case, I said some really stupid things. In hospital, they asked me if I knew where I was and I said "Matalan" (That's a clothing store), they also asked me if I knew who was our Prime Minister and I said "Diane", I don't even know anyone by that name. Really, that's not important, unless it persists, but thankfully it didn't and I made a good recovery. I suppose it's only natural that when your brain goes through such a trauma, that it will take time to recover. The big question is 'to what extent will it recover? All of us it seems will have a different answer to that question but we owe it to ourselves, those that care for us and those that saved us to make the best of what we've got. So try to draw a line under the event and move forwards from it as best you can and enjoy your 'second chance' at life. It's not always easy, but over time I'm sure you'll get better to one degree or another and bad memories won't be erased but they'll fade over time. Good luck, and let us know how you get on! Macca

Hi, I always found that mental activity was the key to getting over this. In particular being around and engaging with other people. When I was on my own, reading and looking at art, photographs, wildlife in the back garden (birds, hedgehogs, squirrels, fox) would occupy me for hours, researching my family history and so on. It doesn't have to be a physical activity, just something that stimulates thought and discussion. Being on one's own dwelling on what has happened is not good for one's soul I feel and these periods should be kept to a minimum. Try to find an interest in which your Dad can engage and talk about! Hope this helps, Macca

Karen, Congratulations on reaching this mile post. I'm only half way there (nearly 5 years)! I don't know about us supporting you, more the other way round - you supporting us. When you asked me to be a mod, I felt incredibly privileged. Now, having worked with you and the others I feel even more so. Knowing I am in a position where I can help others is immensely gratifying - and it's all because of you! So thank you and long may it continue!! Hip hip hooray!! Macca

Hi Annie, Not unusual this one. Everyone's rate of recovery is different but your body lets you know when you have done too much too soon and it sounds like yours is telling you now! Ease up on the pace a bit and as Tina says - talk to your doctor - you are already doing so well to be back at work so soon. You don't want to set yourself back. Perhaps take some of your annual leave allowance to give yourself a break. Look after your body and it will look after you - abuse it and it will make you pay! Good luck, Macca

Congratulations - a weight off your mind! Macca

Hi Sarah, Firstly -welcome to BTG. I am so sorry for your loss and wish you the very best as you try to come to terms with it. I was married to the mother of my two sons for sixteen years - she then had a SAH around 1987. My boys were 10 and three at the time. I had my SAH almost five years ago. That means my boys have two parents who have suffered this. It is rare for it to happen in the same family. Naturally I was worried about my two boys. They are 38 and 32 respectively now. My former wife recovered well, but her personality changed and, well, we're not married anymore. I asked my doctors about it. His response was that we had just been unlucky and that there was no proof that this is hereditary, but he did admit there was very little by way of research. He likened what had happened to us to that of riding a push-bike and getting a puncture. Some will go forever without getting one and others will get one and the cause will not always be apparent. Results of the puncture would also vary from being easily repairable to not being repairable at all. I also have a friend who has suffered four SAH's and survived them all. He is such a rarity that the hospital ask him to address patients groups and doctors and nurses groups. I also know of two people locally who survived SAH but one has severe mental problems as a result and another who's having currently to be taught to walk and talk again and is a shadow of his former self. However, they are still with us and we are grateful for that and progress is being made with both of them. I am lucky. I have recovered very well apart from my pituitary gland having been damaged and as a result I have to have some hormone injections daily to combat chronic fatigue. I cannot imagine what it is like for you having lost someone, but I can tell you that people on here understand what it is like to suffer with SAH and what it is like to watch our families suffer at the same time watching us go through it. What I can tell you is that my sons are going from strength to strength and they show no signs of any problems. Please try not to worry. SAH is rare, and occurring more than once in the same family is rarer still. Obviously my wife and I were married and not blood related. But my sons are blood related to both of us and are healthy and well. I hope this helps you. Please talk things over with your doctors. I wish you and your family well. Macca