Sasbo

Hi Zola Welcome to the gang. Great that you've found the site, it really is a great place to be amongst others who know exactly what it's like to be a SAH survivor! Looking forward to chatting Sarah xx

Hi Yes, another absent minded one here. Burning the cooking and leaving taps on are my two worst regular offences...... Sarah x

Hi Sharon Really feel for you but you should try not to be so hard on yourself. It's, perhaps, in some ways worse for those who haven't had the SAH as you can see the change, pain, damage that the loved one is going through and have to make really hard decisions on their behalf. It's more than enough for anyone to cope with. You need to get your strength up as you've been through an emotional minefield. My partner and I have only really just begun to talk about the emotional battles we've both been going through, two years on now, and are really only just beginning to face up to it in our own ways - me from the patient (or should I say impatient!) perspective and Fiona from the carer's perspective. We have only just begun to realise, or accept, that she is also suffering from some form of post-traumatic stress and all the guilt and worries that go with that. She too has needed time out throughout the last two years but it has helped. If you'd like to talk to her pm me. Thinking of you and sending you lots of love Sarah xx

Hi Tina Really sorry to hear about Dee, hope you're both bearing up ok and that he's getting everything sorted. Lots of love to you both and hope everything improves VERY soon. Sarah xx

Hi Karen Fatigue is a major factor for me. I don't need to sleep every day now, but at least a couple of times a week. Sometimes it's so debilitating that I can do nothing but sleep. I think the two lots of surgery exacerbated the fatigue. Surgeon says it will always be there, but may hopefully improve a little. It's the one main thing that I worry about regarding working full time again. Sarah xx

Hey I'm left handed too! Can we do a left hand/right hand survey??? Would be really interesting to know. I'm one of five children (middle one) and the sequence goes: Girl - left handed Boy - right handed Girl - left handed Boy - right handed Girl - left handed Both my parents are/were right handed but my maternal grandfather was left handed. My big sister was always getting bashed on the hand with a ruler at school to make her use her right hand. Didn't work! That barbarism stopped before I got to school but, like most of you have said, I too write with my left hand, use a spoon with my left hand but do most other things with my right hand probably out of necessity. Sas xxx

Hi Laura It's not moaning - this is where to let it all out as we have all gone/are going through these very same emotions. I have feelings just like you too, the stamina's not so good now, no party-party-partying past 8pm (and even that's late these days!!), just no energy like before so the worries do set in. And, as you have mentioned, it's almost certainly exacerbated due to all the other things you've had going on just lately. The only way I can deal with it is to try and be reasonable with myself and believe what I'm told. It's hard to accept in our vulnerable states but you really must or else you'll tie yourself in knots and that won't do you or Simon any good. Have faith my little mate but never, ever worry about sharing your fears and worries here. We all need each other. Sas xxx

Hi there Alliance & Leicester Travel Insurance (Fortis) based in Southampton have been brilliant with no penalties whatsoever for SAH or high blood pressure. Pretty good annual global travel price too - £65-ish per annum. And I had to make a claim a couple of years ago to get home from the Middle East when my mum died suddenly. No quibbles or anything, they paid immediately I sent them all the receipts and info. Can't recommend them highly enough. Sarah xx

Hi there Been away and have only just read your post but the survey was closed so, sorry, would have participated if I could but too late! Good luck, anyway, Regards Sarah

Hi Claire Welcome to BTG. Sorry to hear about your SAH but, hey, that's why we're all here!!! Don't mean to sound glib, but a sense of humour is definitely required don't you think, after what we've all been through. I had my SAH September 2006 and a second aneurysm clipped almost a year ago in October '07. Still not back to work, still get very fatigued and have a slight weakness in my right leg/foot. Memory absolutely pants and no good at multi-tasking, nor in confrontational situations nor in busy places such as supermarkets, shopping centres etc. Various other niggly legacies but SURVIVING and here. This is a great site absolutely chock-a-block with wonderful people at different stages of recovery or caring for those in recovery so we all help each other. Looking forward to chatting with you again. Sarah x

Hi KD Sorry to hear how down you're feeling but it's really not unusual (as you've probably seen from all the replies so far). I'm 2 years post SAH and 1 year post second annie clipping and still have thoughts just like you do and get extremely fatigued. I have been having real difficulties coming to terms with everything that happened, don't actually know if I ever will come to terms with it, but I do know I have to somehow get used to it. And, like others have said, despite sometimes feeling, in my more irrational moments, that it would have been better not to have pulled through, I know the devastation it would have brought to my family had I not. My partner said today that she is only now really beginning to accept what happened and was yesterday in tears at the thought of me not surviving. It seems to me that shock is a major factor much later on in recovery. This is a great site for helping us all understand what's happening to us and for sharing our thoughts, hopes and fears. Glad you found us. Lots of love Sarah xx

Hi All Shiree, I'm with you on that. As soon as I start to feel 'normal' again and pretty much forget that I've had a SAH then, bump, I'm pulled up really sharpish with tiredness, fatigue, headaches, depression (or at the least, feeling rather down). It's like someone's saying, "Ha ha you think you're ok but guess what, you're not - tut tut you forgot you had a brain haem didn't you...." Oh well, just another thing to learn to come to terms with! Lots of love Sarah xx

Hi there, sorry don't know for sure but my neuro says make sure I don't raise BP and I know saunas do so - well, guess it's best to ask your GP. The nurses in neuro ward said massaging also raises BP so I avoid those too. Sas xx

Hi Beth What more can I add - it's all been said!!!??? Welcome to this brilliant site. Sarah xx

Hi All Have you seen Rainman with Dustin Hoffman and Tom Cruise? Well, for those who have I call Fiona Fifi Babitt (after the Tom Cruise character Charlie Babitt) because if someone tells me to remember something important I am fixated on it to the exclusion of everything else so I feel just like the Dustin Hoffman character who repeats frequently "Charlie Babitt says ....." or "OK Charlie Babit" etc. etc. and walks around muttering whatever it is he's fixated on. Definitely have lots of Charlie Babitt moments! Sarah xx

Hi Kelly Glad you found us here on Behind The Gray. Welcome and, as everyone has already said, you're not alone, we've all experienced or are experiencing much of what you are going through. Hope to see you again soon. Sarah xx

Hi All Yep, I can identify with everything you've all written; my short term memory is NOT GOOD to say the least. It's really frustrating and upsets me greatly when I'm tired but is a great source of amusement when I'm not. At a recent neuro appointment I said that I seem to live my life off lists and my surgeon said that I need to accept it will probably always be like that now. I too have learned to put all the meds in one of those pill boxes divided into 7 days. We've had all sorts of funny experiences with the memory loss, some of which could have, and some of which have, culminated in very messy accidents; for example - do you know how far the debris from an exploding hard boiled egg can travel! If you don't want to try it at home I can tell you it is a long, long way up, down and across a reasonable sized kitchen. Must go now and prepare tomorrow's list in Sarah's Big Orange Memory Book. Sarah xx

Hi there and welcome to BTG. Thanks for sharing your story; looking forward to chatting with you in the future. Sarah xx

Hi Myra I have been in the same position as you, had the treatment amidst great fear and trepidation, but now am so relieved that it's been done and is over with. Believe me, you will feel so so much better in yourself once that worry has been lifted. Thinking of you Lots of love Sarah xx

Hi Janet, I think you've hit the nail on the head there. My two don't really ask specifically, just quickly ask how I'm feeling in general and then change the subject. I was with my dad the other day and told him that it was my two year annie-versary; he really didn't want to know, he was actually visibly upset by the reminder. Most other people are exactly the same and I'm really only just beginning to realise, or perhaps appreciate, how big a shock and what a traumatic experience it was for all the family. Sarah xx

Have a lovely holiday, relax in the sun, a few pina coladas and chill. You deserve it. Lots of love Sarah

Hi Nick Just like to echo what everyone else has said, welcome to the site. It's been a great help to each and everyone of us. Funny that, saying the site has been a great help - it's the people on it who have been the help and, more importantly, Karen for starting it along with her, Keith and Chris's hard work in keeping it up to scratch! whatever, it's a great place to be, so glad you've joined us. Sarah ps - great wheels

Hi Karen Here are my responses to your questions. Hope it helps. (1) Do you think that members of Behind the Gray should play an active part in the medical forums of the BTG message boards and provide support when needed if they can? I think that members should play an active part in the medical forums by relating their own experiences if relevant and, as we all appreciate, support from other BTGers is a huge help and comfort because we've all been through a similar event. We should all remember, though, that everyone is different and their symptoms and reaction to the variety of things we have to go through will almost certainly differ. (2) The Green Room forum was set up for members that participated in the support of others on the medical forums of this message board and not purely for social networking? Absolutely agree that the support is the primary function of BTG and is of paramount importance. There are more and more social networking sites being set up, as well as the established ones such as Facebook and MySpace, which are there for general communication. (3) The Green Room forum is also for those that are unable to find day-to-day support and need to find a friendly ear? Very true and, I believe, a very, very important part of the BTG. The Green Room has been such a support to me since I joined, particularly in the earlier days when support was the primary function of the Green Room. Sometimes, nowadays, it's quite time consuming to sift through the posts for relevant info. (4) Behind the Gray was set up, to support other SAHers /Stroke survivors and their carers? That's what I've always believed and understood, and still do. (5) Behind the Gray is friendly? Very friendly and this, to me, stems from the administrators. Karen and Keith, are always supportive, not just of website queries, but in every way with a friendly, willing and helpful manner. Nothing is too much trouble and this is echoed by other posters. (6) Do you feel intimated to post in the Green Room or have you ever felt excluded? Don't feel intimidated but do, more latterly, sometimes feel excluded. (7) Are you put off from joining in with the Social Meets? Yes/No. No and would thoroughly recommend them to everyone because when you get together it's just like meeting up with old friends that you've not seen for ages. ( Do you think that we’re striking the right balance? e.g. Over friendly, not friendly enough or not offering enough support? The balance is spot on with the right level of friendliness and as much support as required. (9) Any other comments? Only to echo what others have already written. This site is by far the best one for SAH survivors, carers and family members as it's an embodiment of what we've been through and how we're coping and learning to live with the residual of SAH. More often than not immediate family can't accept what an SAH has left their loved ones coping with so reading other people's daily experiences can help with that acceptance. BTG has been, and continues to be, a major influence and help with my recovery and the friends I've made on here (both those I've met in the flesh and those still only met through the ether) I hope and trust will be friends for life. BTG has ensured that we've shared such deep experiences that almost certainly can't be shared with others. I really can't thank you enough for setting up the site and continuing to run it so expertly and with such an innate knowledge of what's needed by us SAHers, and thanks to you, Keith and Chris (and not forgetting your families for supporting you guys) for the many hours, days and weeks work you put in to ensure its continued operation. From the bottom of my heart, thank you! If there's anything else you'd like to ask, please do, and if there's ever anything I can do to help please let me know. I presume there are costs involved with running BTG, in fact I'm sure there are with web hosting etc. - how can we, as members, help with these costs? Fund raising activities, perhaps? We, Fiona and I, would really like to be able to give something back in any way possible. Sarah

Does anyone else find their capacity for drink has diminished? I'm a really cheap date now - 2 glasses of wine and I'm anybodys! I forgot to ask my neuro why this is so can anyone help? Just curious, know it won't make any difference. Sarah x ps - I like Guinness too, preferably in Dublin....

Hi Evelyn Welcome and well done, it's nearly 3 years for you, 3 year annie coming up then! Where in the world are you? Looking forward to chatting. Sarah x