Lauren D

It's more than 10 years post my SAH. I've made an excellent recovery but due to the challenges I've had to face during this time I've suffered from considerable anxiety, however successfully overcame the worst of this in recent years. Last year I was moved to another work place due to restructuring and shortly afterwards I was put on strict performance management and from comments made by my manager it was apparent that I was being deemed inadequate in some way. Due to the processes put in place my job is under threat and I eventually became unwell and have been signed off sick from work. I am taking advice and I following things up in all the right ways. In my previous workplace my managers were well aware of the SAH and the impact on my anxiety levels and supported me enabling me to perform to the best of my abilities and I have almost completed a degree but have had to put the last part on hold due to being unwell. It has occurred to me that this might be discrimination and I was told by someone who was meant to be supporting me that no-one who has had an SAH recovers completely. I would be interested to hear from anyone else who might have been discriminated against because of their SAH.

Hi All I had to undergo a varicose vein procedure a couple of months back, have been suffering leg injury since the marathon and couldn't run or play tennis, so decided to stop ignoring the nasty red mark on my ankle. It turned out to be varicose eczma which meant I had to get the vein done. Fortunately my private insurance covered it as they wouldn't pay for this laser procedure on the NHS. As they wanted to do it under a general I was a bit worried and contacted my neuroradiologist and he told me that to all intents and purposes the aneurysm is no longer of consequence as it's completeley occluded so not to worry. However, I'm so glad I checked with him first because when I met the anaesthetist just before the operation he did appear a bit disconcerted and unsure until I reassured him I'd spoken with my specialist at Kings'. So just worth a mention in case anyone else has to have something done - I think we have to remember we are the experts on the subject of SAH and all that goes with it. Lauren

Well done Karen. You should be really proud of what you have achieved. Lauren

Hi Linda Though I was not clipped and only coiled I did have that awful wait for 12 weeks for the second op and as I was back at work (never realised how much work meant to me till I had the SAH!) that helped pass the time but it was hard to fill in the time not worrying. I was able to go swimming which helped me and had to stay quiet to keep on top of things - I couldn't really talk about it to anyone - but you can share your fears here and see if you can find things which might help take your mind off it which you feel up to and try not to stretch yourself beyond what you feel like doing. Don't try to push yourself just now. Hope you managed to get hold of BSF. Best wishes Lauren

Hi Linda I am sure you will find lots of answers to your questions and everyone here is so kind and helpful you're in safe hands. Lauren

A bit down tonight well, often, but I'm training for the FLM. I feel selfish as I'm so lucky really does anyone else get that guilt thing? Perhaps it's not SAH just me I don't feel I'm doing enough ... does anyone else identify with that? Why doesn't it all just go away like appendicitis after the op?

Hi all I'm just so relieved to learn that I'm not the only one who has had ongoing PTSD. I was fine when it happened then lost consciousness for 2 days and could only remember vague shadows and as my family didn't want to talk about it and shut me out as it were I went into denial and I think that really triggered it off. I'm still trying to unravel it and make sense of it all and although I don't appear as having PTSD it's left a bit of a legacy of issues which I'm continuing to work through with a counsellor. I think this article will be helpful to explain why I get so distressed at times. The first year was the worst really but then SAH combined with a slower functioning brain and memory loss and other people unable to understand is traumatic. My best wishes to everyone who is going through this part of the experience - just knowing it's "normal" helps and there's loads of support here. Lauren

Feeling a lot better. It's helped to be able to sound off on here without being judged as it's stopped me blowing a fuse these last couple of months. I've decided to get off my high horse and just go along with things as they are ... and put up with texts and no conversation or meetings as better than nothing. Mum is deteriorating her short term memory is very short now and I just want to concentrate on having as much good quality time with her as I am able whilst we still can. I hope to get her up to the Mall on the 26th April if she is well enough and I'm hoping that my sister will bring her, I live in hope of reconciliation so had better try to be more tolerant ... I can only try.

Thanks LizBeth - they cannot cancel you a 3rd time or you will breach and there are penalties. Check out with PALS if you need any details. It's so unfair. Lx

May I add my congratulations too!!! Well done in the cause. Donna just to let you know I'm in the patient leaflet produced by the Brain and Spine Foundation - SAH 2004 and recoiled 2006. My only claim to fame! Lauren

I was out with Mum in a restaurant we regularly go to last night and I have been unable to tolerate the noise of the chairs scraping on the wooden floor since the SAH and won't go there if it's crowded. I still won't go anywhere crowded or too noisy, but Mum noticed, in spite of her dementia, that I'm not so sensitive as I was even a year ago and I was so glad to realise that this has got better. The visual sensitivity was really overwhelming for the first 6 months / year. Then it gradually started to subside. I still like open spaces and not feeling crowded, but I was a bit like that anyway it just made me more aware of what I'm like. I was amazed when the BSF told me it can take several years to readjust but I think I've had a lot of good quality living in spite of these oddities, now I don't worry about what other people think and that's another good sign for me. In some ways I think that hypersensitivity gives us an insight that we wouldn't have otherwise experienced and I'm grateful for it as it helps me in dealing with Mum's dementia and knowing that an altered state of consciousness doesn't lesser a person in any way.

They do go in time, or at least they become manageable. I have to avoid getting exhausted or too stressed, like getting worried about Mum gives me nightmares but mostly they're under control. Also I try not to get frightened if I get them and realise I need to slow down a bit and use them as a guide rather than something which controls me. I try to make sure I address any stress before it overwhelms me and triggers them. Hope that helps. This funny weather with dark nights and storms doesn't help. Come Spring it will all feel much better. Laurenx

Hi Joanne Welcome to BTG. I cannot advise you I can only tell you of my experience and let you draw your own conclusions. I went back after 8 weeks, after 12 they tried to make me go full time. I just found it too much and had to go part time in another department and all was well, however when I went back to my job after 6 months working full time just before my follow up angio, and, knowing they didn't really want me, I wish I'd not put myself through it all now it was just too much. Also for the first year I really couldn't handle too much noise or people being stressed around me as it just rubbed off and made me nervous and was very wearing. I wished I'd just known how to look after myself a bit more! Good luck and best wishes Lauren x

Hi Sharon Sorry I've meant to be catching up with you - how are you? Been a bit caught up with Mum with her stroke and the training etc. but would love to hear how things are with you. Laurenx

Thanks Tina. Solicitor recommends not to pursue it but it's just that I signed everything in good faith and then they've done this to me and to get accountability would get very nasty and I don't want to do that. Guess I should just go out and get a life! Take care Laurenx

Mum's a bit better this week and her memory has started to improve, so I'm hoping it won't be time for a nursing home yet. I'm working hard on staying calm and trying to recognise that I can't expect everyone to see things the way I do but to do my best in spite of that. I'm waiting to hear for a neurologist appointment and I've seen a solicitor to get legal advice about what happened to mum's money after I had my SAH as I think the non-disclosure thing is totally unreasonable - especially as I took out the original poa and sorted out mum's claim for disability allowance and post my SAH they refused to give me any accountability. I mustn't get cross as perhaps they think it's in mum's best interests that I'm excluded from the family as someone who's batty post SAH ... but it really really hurts and I don't think I'll ever get over it.

I found post SAH that the best thing for me was a little swim as I just felt better afterwards. I gradually stepped up the exercise until I could play tennis normally again and then took up the running and built my stamina up following a regular programme but no more than I could manage. I would encourage little and often. Also I slept better if physically tired and it helped with the terrible anxiety it left me with. Also the food I ate seemed to become much more important. Lauren

Welcome Vaughan. I'm so glad Karen has set up BHG it's so good to be able to talk about it even four and a half years on. SAH in 2004, second coiling 2006 and discharged end of 2006 and now training for my third London Marathon for the cause. The exhaustion was so overwhelming and although it got better I'd learned to accept it and decided it was partly old age - once I'd recovered as it were and got through the second op and started to train for the marathon I still got tired but it was more physical like the training did something for my brain and stopped the mental tiredness and calmed it all down. I still find it triggers if I get stressed, but even this time last year I would've been in bed at 10pm on the dot but now I realise I'm more "normal" in that respect. I think we adapt to it - that the stress of the SAH combined with the stress of the fall out from it and the challenges are equally exhausting and it's a double whammy - as we learn to deal with it we get stronger and learn what's right and what's not right for us. That said I'm still learning I have to let go of things which exhaust me - couldn't consider clubbing but have been to a party a couple of weeks ago which was my first in ages and I felt brave enough to go. I just sing along to Leona Lewis now, It'll all get better in time ... it takes a heck of a long time but a slower life is much much nicer now from one who liked the faster lane. That said, I went to the Caribbean on my own just before Christmas and went scuba diving so it doesn't get much better than that and I think my life is probably much richer than it was before ... even though I get my down moments. I just don't do late nights any more and they don't appeal as I keel over by midnight! (probably more like 11 pm and 12 on a good night, past then it's the pumpkin carriage) I dont' think even a year ago I'd have felt this way, so it does get better, you just have to believe it, best wishes. Lauren x

Hi all Am at work so cannot respond properly but will get back to you. All brill ideas. What about the Brain and Spine Foundation - would you like me to find out a bit more about their plans for promoting SAH in the future as I know they have this work in hand? Also a friend at tennis club 43 has just had one and is in Kings coiled last thursday - spoke to her yesterday and she's recovering well still in HDU and like most people had only thought this sort of thing happened to "older" people. Lauren

Thank you so much for just listening as well as giving me ideas. My dilemma is that I really don't want to stir up the authorities against my sister or stir them up and offend them if it will push them in the opposite direction, then Mum's care could be put in detriment - it's how the system can work against you if you don't tread carefully. I've thought long and hard. I nearly beat up my counsellor last night and told him I was on the verge of giving him up if he continued to try to get me to empathise with Julie and suggest that I want control of the money - it's not about that at all. Also do I have a problem with the opposite sex taking control of things? So I told him I don't have that problem at all but I do have a problem with being told that and I think he came on board and realised I just want to get the best for Mum and don't want to be ridden over roughshod. Good God I'm a 21st Century divorcee who has been taken for a ride once too often and I'm no feminist but believe in equality. Perhaps he stirred me up enough to recognise I don't have problems witih opposite sex but simply with equality or more plainly put - fairness! That said we ended on a good note and I think he saw I wasn't mental because of the SAH because I think he did actually, I saw that look people get when you mention brain surgery ... and they jump to conclusions. It just passes across their face like a cloud across the sun and you just know before a word is uttered. So the money and the finances. I'm going to chase up why the neurologists didn't get consulted when I suggested the hand was a neuro prob, I'm going to find out why mum was discharged without a brain scan when I was on holiday and who was looking after her and I'm going to talk to the carers, they're a good bunch but not all of them are so caring and miss things. I don't want to bung her in a nursing home if we can keep her where she is, but the stairs are a problem, the rules are a problem as it's not a care home but a housing association with care bought in so she can go off and wander and fall over - but, if we put her in a nursing home she loses all her independence and will just go down the pan. The girls love her and care for her but as it's only piecemeal care that's the problem. If I had my way I'd get rid of the stairs, keep the same set up with meals thrown in every day at lunchtime and a level of independence and carers to go out shopping with her and up the pub every now and then. Won't go on, perhaps we don't say or make enough noise for these things and we all have to go out to work nowadays to pay the mortgage etc. etc. and have lost sight of what's really important. Thanks for letting me go on. Thanks for listening. Lx

Hi All I've still not told my sister re mum's stroke as she's yet to answer my letter to her from before I got the diagnosis saying we need to talk about mum's care and will she please share with me the finances as taking my poa away when I was depressed after the 2nd coiling was bang out of order and they've never shared what they're doing with the money with me and I do all the running around trying to get mum the best care which costs. That's given me oodles of depression and worry even right after the SAH when I was trying to cope with mum's mental problems, i.e. depression and dementia and a big lack of self care. I don't want to tell her as she always ends up shouting at me and I'm terrified of rowing back as it so upsets me. I'm waiting for appointment with neurologist to get advice. Meanwhile I'm getting the carers to monitor what mum needs in terms of extra care and also the OT are going in so rather than me putting my oar in I'm going to leave it to them to raise it with GP who I've already spoken with and possibly social services, then I can't be the bad person saying my sister's not doing enough. My heart's already broken by all this feuding - does anyone have any practical ideas which I could use which won't fuel the flames more? Laurenx

Hi Rachel The Roddicks sold out to L'Oreal in the end. However what a good idea to think of them. Carol Barnes died of one last year and it does seem to be hitting much younger people. I read somewhere that it gets 10 years younger with each generation where it's a genetic factor. Just look at all of us young 'uns on here! Girl at club is only early 40s' so there's another instance. We do need a Sub-Arachnoid Awareness campaign. Lauren

Thanks so much for your kind thoughts. I've just taken her out for Sunday lunch and she's very very quiet. My sister, for all our differences and disagreements, had taken her out Saturday and bought her some lovely Per Una skirts which she likes to wear as they cover up the suprapubic catheter attached to her leg. She's not really getting the level of care I would like, she's smelly and has not washed properly and hasn't had her hair done since the fall at the beginning of December but has refused all offers of help. I've stacked her fridge up with lots of little eats and things like tangerines and grapes so she can pick and I tried to talk to her about what's she's doing but she just stays in bed and watches tv unless I take her out and her confidence has dropped loads. She's very wobbly on her legs and did remember the hospital visit but said they'd told her she'd not had a stroke. Her memory is only working short term but she is quite contented. Julie only sends me texts asking what's happened and won't pick up the phone - I think she is in denial and very angry with me still for my SAH and angry that mum is unwell. I wish I could deal with it better. Yet, I'm glad I've come through and can now cope with mum's dementia and have managed to get some balance with work and getting her treatment. After the SAH I just could not handle trying to manage her dementia, it is so demanding taking someone out who doesn't know quite what time of day it is or what happened yesterday and I have to keep talking to her and prising out information and now I'm so glad I can conjure up the past - when we were kids, what Dad did etc. and it fires her imagination, but it is hard work and lunch was hard today as she was so quiet and I was a bit tired with it all being so one sided, not that I'm being critical because that's dementia. I can still see the shades of mum as she was but it's hard to tease out, she lights up when she talks of her boyfriend Fred who says she's not had a stroke but he'll give her a stroke and says she can do what she likes at her age so I have to set judgement aside and make the most of this time in the best way I can. I could cry though and so wish me and my sister could reach some agreement - there's so much anger in my family and I wish I could wave a wand and make it better. Sorry if I've gone on but I feel safe to let it out here.

Hi All Some great ideas are coming across here and I feel really enthusiastic. The FAST campaign looks like a no-brainer (pardon the pun) for SAHers and I've heard nothing back from them. I spoke with the BSF briefly at the Emirates do and they reckon there are some 25.000 subarachnoids per annum and most people end up in the mortuary and are not even accounted for. They are turning their attention more towards SAH and are working closely with the DoH so I am waiting to hear how they will be redesigning their image as they have people who are working on it right now for this very reason. We do need to make ourselves heard, firstly from the diagnostic front and secondly from the recovery issue and that it's not a quick fix which seems to be the general perception, coiled and out and back to normal ... one of the girls at the tennis club has had one this last week and I noticed the perception is that the op has been done so it will all be all right in a few weeks and I feel so sorry for anyone setting out on this course as it's such a difficult one. I take every opportunity I can to publicise the cause and I'm not sure another charity is the right way forward. I think that BTG is wonderful and by turning it into a charity might spoil the work that Karen has done and change the direction because by having a place where we can talk is wonderful. If my opinion offends anyone, just say, I'm just expressing my feelings. Bless you all. Lauren x

Hi Joanne I can't advise you on this but I can tell you my experience. As I am on my own and had just started in the job I rushed back after 8 weeks thinking I was fine and they'd be a bit caring as I'd just started in the NHS after working in the City so I could be around for my mum and her ill health probs. Had a grade II was coiled had been in coma for a couple of days. My manager did not want to accommodate me and made my life very difficult and I got cross with their behaviour and the union and HR got involved who were great. They seconded me elsewhere working part time and I did a really good project, treated right and without discrimation and caring I was fine. Then I went back to where I was before and they acted up and I got really stressed out, around the time of the angio six months on, kept picking on nothing and moved the goalposts and it really made me unwell and my recovery was seriously impaired by it all. They tried to get me out on the capability policy in the trust and I consulted solicitors as I realised my life depended on sticking up for myself and it got really very unpleasant but the union and HR stood by me and I was actually promoted out of the situation as they said I was working below my intellectual capability which was the cause of the problem. Now nearly 5 years on I'm in an even nicer job in the Trust and I've built up a great mix of colleagues - those who believed I had something to offer stood up for me. If I had to do it again in hindsight and didn't only have myself to fall back on I would've taken six months off - as I don't believe you lose your abilities brain injury requires loads of rest and recuperation - or just gone back a couple of days a week - as the brain and spine bunch told me - and gradually built back to full time over the course of a year. I think it all depends on the sensitivity of the people you are working for and if you can trust them to believe you when you say you need a break and give you some space here and there, and believe in your recovery and don't think SAH is permanent brain damage then you can make a choice based on how they respond to your situation. Hope that helps. Honestly it really does get a lot better and I could mark it on a month by month basis, just trust your instincts and I wish you all the best. I never thought I'd be in the Caribbean on my own scuba diving and whale watching this time six months after the SAH as I did in Decmeber, and I couldn't even read a map properly or find my way to Bluewater a year post the SAH, but heck I've done it so just believe and you will find out who your true friends are. I also had a second coiling along the way it really does get better. I found some people are just so scared of brain stuff and that's the hardest part to deal with. Hope that makes some sense to you Laurenx