Karen
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Everything posted by Karen
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Daff, that's a really good response and I think that you've pretty much covered it. I've pretty much become headache free most weeks .... well, I still have them and probably more frequently than others who haven't had a SAH, but it's manageable. I still have a neck left on my aneurysm, so I'm not completely fixed. I do have the odd week where I suffer ... but nothing like the earlier years. You may hate me for saying this, but I think that the initial 2 years are a marker to understand what's happened to you and at about 5 years post SAH you probably learn what is and isn't good for you and what works for you. If you can offload additional stress, then do it ... a little bit of stress isn't bad for you and we will all have stress in our lives to manage and we can't always change things, such is the nature of life. It's tough, but trial an error to see what you're managing and when things go wrong, take a mental note of what you've been doing. Sometimes you have to develop a bit of a selfish gene .... ask for help, accept it and do what's good for you too. I'm nearly 10 years on from this SAH and its a learning curve, but life does get better. xx
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Phil, you're very early days post SAH ... emotions will run riot for quite a while and we all understand that here. If you need to talk, then just keep talking on here. A non aneurysm bleed, normally seems to have a very good prognosis .... not that this helps you at this time. It's a scary time and you will feel of the things that you are feeling....but life will get better. I'm sorry to hear that your wife and son have had to go away ... get yourself better, keep the contact up with your wife and son .... she is probably feeling pretty scared too and has done what she thinks is good for your boy....to be honest, as a Mum, I would have done the same if my partner was hitting the wall and you would probably have done the same too if it was your wife. She's only looking out for your boy. You will get better ... the anti-depressants will help you and will take a few weeks to kick in ... get plenty of rest, keep your fluids up and accept help. Talk to your wife, don't bottle it up ... she will feel better if you do and you will too. Be honest and open about how you're feeling ... Life does and will get better given time and there are plenty of people on here who will help to support you. x
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Win, you've come a long way since your Daughter first posted, when you were still in hospital and extremely poorly... look at you now! xx
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I was cooking a curry when I fell on my bum I shouted out “Oh help me Al! Oh help me Mum!” 5 years have passed since that awful day But never give in say, “I’m here to stay!” If it wasn’t for loved ones I dread to think! Keeping us happy and causing a stink. We are lucky, so lucky to be alive and be so happy Let’s make the most of our lives, and not be crappy Now let’s see a smile for all who have brought us laughter. Thank them now, tomorrow and forever after. Thanks to all on Behind the Gray and my family xx WB -
Lovely to hear about the positives with Conrad ... but so very sorry to hear how he has been treated ... it's really enough to make anybody weep. Great to know that Conrad is sharing his story with us and you are too....it really does make a difference. Say "hello" to Conrad from me ... I can remember fighting too and if he's still feeling traumatised please do tell his GP and get him referred for counselling. Post Traumatic Stress Disorder is something that many of us suffer with flashbacks ... I wish that I knew then, what I do now, but didn't have the knowledge ... I couldn't sleep and had flashbacks and many of the other symptoms. What Conrad has suffered, is probably a lot worse than many of us .... it's always good to talk. Hugs and love to you both. xxxx
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Forgot to say, that in the early days/months with the double vision, dizziness and stabbing pain in eye, I found a little bit of relief in patching over the bad eye for a few hours ... I used to use a round make up remover pad and surgical tape to apply it ... gave me some respite, but not the cure all. A cold wet flannel left in the fridge can help too with the eye and head pain. I also found (still use them) that eye moisturising drops help. It's all a bit hit and miss really ... but hope that your Husband can find some respite from the pain or at least something that helps to make life a little more comfortable. xx
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Sounds as though it could be nerve pain .... which is what I had for quite a while and you need to consult his GP to perhaps try a different route. Try a bath for him, before bed time, as a good nights sleep will help ... something like a Radox muscle soak, which are herbal bath salts and pretty cheap ...you can pick a box up from Tesco or the Chemist. I didn't find that Co-Codamol worked for me at all after the SAH ... I often have pretty bad eye pain on my right hand side of my face (had a third nerve palsy) ... I found that taking Paracetamol with Ibuprofen worked for me ... not that we can recommend drugs/painkillers on here, but it's another route to take, as in asking your GP to see if it's suitable. One size doesn't always fit all ....xx
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Put your feet up and hope that you're healing well ... great news! I may be another one that needs further surgery .... lovely to read your post. xx
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This extract has been taken from the following hospital website, where some of us were treated in the UK: http://www.uhs.nhs.uk/OurServices/Brainspineandneuromuscular/Neurovascularservice/Neurovascularconditions/SubArachnoidHaemorrhage/FrequentlyAskedQuestions.aspx
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With many thanks to all of our members who kindly participated in this study. Below is a very brief introduction or a taster to the article that now appears in the Journal of the Neurological Sciences 2014. You will find the full article as an attachment below the introduction, which you will need to click on, to be able to read it in full. The full article is 7 pages long, so it's quite lengthy and for me personally, I find it easier to print it off and read it, rather than reading from the computer screen. I am still in contact with Dr. Noble and he thanks you all. If you would like to leave feedback on this thread, then please feel free to do so. Psychological distress after subarachnoid hemorrhage: Patient support groups can help us better detect it - Adam J. Noble & Thomas Schenk - Journal of the Neurological Sciences 2014 Introduction One-quarter of subarachnoid hemorrhage (SAH) survivors develop psychological distress. This impedes recovery. Limitations to existing care pathways mean that distress often goes undetected. We need to know how to better identify it. Support groups for SAH exist in many countries. No research has been conducted on them. Distressed patients might be concentrated amongst them. If true, this could offer a low-cost way to help better identify distress. We conducted the first study to determine which survivors access such groups, their needs and compared them to the wider SAH population. 414 UK SAH survivors affiliated with national support groups were recruited. They completed a ques- tionnaire, including validated measures of anxiety, depression and posttraumatic stress, and asked whether they had been examined or treated for distress post-SAH. How then might we improve the detection of psychological distress in the SAH population? Establishing a new, working relationship between health services and the SAH patient support groups that already exist in many countries might be one way, without substantially increasing cost. Such groups are typically run by voluntary and community organizations. Examples include The Brain Aneurysm Foundation Support Community in the US, Behind the Gray in the UK, and Schlaganfall-hilfe.dein Germany. Acknowledgments We thank the patients who participated in this study. We also acknowledge the invaluable help of the following patient groups for their assistance with participant recruitment: Behind the Gray, the Brain and Spine Foundation and Headway. Click on the link below to download the file. Noble &_ Schenk_'_14 Journal of Neurological Sciences.pdf or if the above doesn't work, click on: http://fulltext.study/download/1913480.pdf -
Good luck Poppy, thinking of you today! xx
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Good luck Kelley and hope that you get all of the answers that you need. xxx
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A letter from your brain Hello, I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That’s why I need you. I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don’t shut me out. Don’t tune me out. When I’m getting into trouble I’ll need your help more than I ever have before. I know that you want to believe that we are going to be the same. I’ll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can’t fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse… I’m scared. I’m afraid that you will do that to me. If you don’t accept me I am lost. We both will be lost. How can I tell you how much I need you now? I need you to accept me as I am today… not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It’s as if here is shame, or guilt, in being injured. Silly, huh? Please don’t be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can’t say how far. I won’t make any false promises. I can only promise you this, that I will do my best. What I need you to do is this: because neither of us knows how badly I’ve been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I’m trying to get your attention in the only way I can. Stop and listen to me. I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you. I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same… you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don’t want to die, and I don’t want you to die. I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don’t want you to give up. Don’t give up on me. Don’t give up on yourself. Our time here isn’t through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn’t easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don’t care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that. Don’t be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don’t reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now. Love, your wounded brain ©1996 Stephanie St. Claire May be reprinted for personal, not for profit use.- 3 comments
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Not heard of it on the site, but from what I've read, sleep disturbances apparently can happen with a brain trauma. Might be worth asking your Doc about it. I used to sleepwalk as a child pretty regularly .... but not now. Are you on any medication that might affect your sleep?
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Hi Kelley, I know how you feel, as I discovered that I have an abnormal artery that may or may not turn into an aneurysm (exact opposite side of the coiled one) ... this was just blurted out when my notes were being hastily read out aloud by an incompetent Doc at my local hospital..... I was so shocked that I just sat there....whilst he read my notes like a shopping list and basically just wanted to get home for his tea. This was a few years ago now, but it wasn't what I wanted to hear at that stage of recovery. I followed it up with my GP once I felt more rational and yes, this information is on my notes .... now to be honest, I would have preferred to have been given this information from the start, rather than to discover it like I did. My GP just basically dismissed my concerns and asked me why I thought it could turn into an aneurysm? D'oh, because it can! grrrr! Maybe he was trying to be kind, so that I wouldn't worry ... who knows! It took me a while to come to terms with the news and it's horrid to deal with. It leaves a lot of unanswered questions that I feel I have a right to ask about ... I'm due back for my 10 year scan in 2015. Sending hugs and love Kelley ... I know how you're feeling. xxx
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I still get the weird smells Win and I've only just started to drink coffee again ... anything stinky just hangs about up my nose for quite a few hours after .... it's definitely a weird one and I've taken to keeping a body spray on me, so that I can give myself a quick squirt and smell something decent! Good luck and let me know if they find out the cause. xx
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Fabulous news Scott and so happy for you! and I've known you from my early days post SAH from Wessex Neuro/Southampton Hospital and probably before I started the website or just after and we met at a pub in Basingstoke. I can remember you having taste issues or losing your sense of taste .... but you could imagine what crisps tasted like ... was it cheese and onion? ... Think that people like yourself and what I learnt from you all, pushed me forward in developing the site. I think that it's lovely that you've met somebody who makes you feel happy and for being you ... irrespective of the SAH ... must admit that I find myself a bit of a challenge, let alone giving advice to somebody that's further forward in terms of years than I am .... however .... Be patient is one of them... Short term memory isn't always good ... Fatigue often rears its head ... I'm sure that others will add something to this, but so very happy for you! xxx
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Casey, I think that the only people that are being monitored are those that have aneurysms which need checking ... which is why I'm due for a 10 year check in 2015 ... as still have a neck left on a coiled one and an abnormal artery on the other side of my brain. xx
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Poppy, I'm due for a 10 year scan in 2015 ... have an abnormal artery on the left hand side of my brain and still have a neck on my coiled artery ... if I need more surgery done, then I will go with it ... to be honest, after all of these years of worrying about the "what if's" ... I'll be happy enough to get it over and done with, rather than wasting another moment on it ... I wish you well and sending hugs and love to you.xx
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Hi Poppy, Hope that you're putting your feet up. I bruise easily and it was tender and a little painful for a few days in that area and when I walked ... definitely worth mentioning it to your Neuro Nurse re: burning sensation. xx
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You're welcome Jane and hope that it's helped.... glad that you're feeling a little calmer. I really hope that the medics treat you a little more kindly in the future ... won't do them any harm if you remind them, as in this is personal to you and just not a job and you're also in shock with the whole thing too. xx
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Jane, both Daffodil and Paul have given good replies. I've had good recovery over many years and often the brain will find different pathways .... it just doesn't stop at a certain point and you should see Robin improving and as he's only at 12 weeks. You may even find that once he gets home, that it will give him even more incentive to push forward ... I hated every minute in the hospital and I was only in for a couple of weeks.... plus I experienced quite a bit of muscle wastage and was like a rag doll when I left. I also had to use a wheelchair to get out and about for quite some weeks. I could manage walking from room to room around the house, but not much else. My husband had to put up grab rails in the loo and bathroom ...I still have one in the shower as I find it handy if I get a dizzy spell and balance isn't too good and I can shower one handed. It will get better .... ignore the crassness of one idiot who doesn't know what this is like to experience, take the help that you and Robin will need and push forward. It's no wonder that you're feeling upset, you've had a tough time and could do without insensitivity. Sending hugs xxxx
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Life but not as we know it !!!!!
Karen replied to Janet's topic in Subarachnoid Haemorrhage Discussion
Oh Janet, I didn't realise, that's rotten for you. Hope that your Consultant can help you out .... the very best of luck for Friday. xx -
Life but not as we know it !!!!!
Karen replied to Janet's topic in Subarachnoid Haemorrhage Discussion
Congratulations Janet with the new Grandchildren! Really sorry though to hear about your other health problems and hope that you manage to get ill health retirement .... not nice to have to deal with the stress and hope that you get it sorted soon. xx
