Daffodil

Hey Luke, some great advice from Paul and hopefully some things you can apply to help mum now she's back home again. i had a grade 4 and also with hydrocephalus and after discharge I needed help for sure. Bathing was beyond me and I had to have a seat in the shower and had rota of friends who used to come and babysit me and help with that and to be honest the first months of being home a huge achievement was taking a shower or getting dressed. It sounds like she does need more of a helping hand, any female friends who could talk to her? can I suggest to mum that she keeps a diary and sets herself a couple of tiny goals each day, yes I did use to include get dressed, get showered and then also at the end of the day before I slept write what was good about that day and add any extra achievements. It's easy to be despondent at all the independence you lose and that needs some work in itself to remind yourself that you are progressing. Food is is really important, plenty of energy inducing foods and regular drinks. The sickness probably needs to be checked out as if she has a shunt that can be a sign that things are not as they should be as can confabulation , if she hasn't got a shunt then I would definitely have it looked at as she had hydrocephalus post bleed. The encouragement , love and attention you are giving her sounds just right but remember you can call her treating team as well if you are worried about her health or wellbeing, I'm hoping you have a neuro nurse you can contact but if not phone the Brain and Spine Foundation and speak to their neuro nurses. http://www.brainandspine.org.uk they also have some great fact sheets as do Headway

Hi Jen i think we have all experienced,and continue to , the varying amounts of anxiety post SAH. The sudden nature of the event, the trauma it causes in our bodies and the confusion and havoc it wreaks in our lives it is no wonder that everything is shaken up to the core. Don't forget, I'm sure you haven't that the injury itself is the brain which is controlling those emotions and chemical releases and depending on where your husbands bleed was this may mean his usual response to everyday situations is heightened. When he feels like this I can only offer this advice. To stop, sit or lie quietly , watch his body and feelings without worry and concentrate slowly on his breathing , just observing that. If he feels happy to have some music that relaxes him to help then do that. If he can pause after calming down and have a rest and sleep like Momo suggests then do that too. If he can't the main thing is not to beat himself up, it's pretty natural. Main thing is after is happens to switch it up, take a walk, Go outside but not to throw yourself straight at something that is going to be overly demanding. Maybe he and you are asking and expecting a little too much too quickly. Without allowing his brain the space to heal then he will just overload and that's a horrid state, so just reel it all in and take very baby steps u til his confidence grows. Make sure sure he is eating regularly and maybe look at what he is eating, plenty of 'superfoods' might be helpful, I can recommend porridge in the morning, the brain is consuming masses of energy so help it to heal. Go easy Jen, it really has been a torrid time for all of you, we know and empathise with that, even now my kids can be taken back to those months their mum was in the 'brain ward' just because I need to go to bed for a lie down. They know I'm ok but it makes them uncertain and worry and you know what it does me too. It's natural to have the worry but what's off kilter is our ability and response to that. Remember I said about relearning things, this is one of them.

Jen, if I was to meet someone new they would not know I struggle with short term memory. My family notice, I notice and can tell the difference and I make the odd mistake at work which shows it up but day to day I can usually use new techniques now that mean it doesn't show. That uses more energy though. So I would say I have relearnt ways to retain short term information but I could only do that once the healing was really underway. So so to answer your question of can you get it back? Yes , in differing ways for sure, for some people it just returns similar to before others like myself we have to find new ways but there will be a way through.

You are so right Greg, plus I would just add the drugs we get put on for the pain don't really lend themselves with to really being great at being present as well.

Hey Jen, wow those early days were a blur for me to be honest but like your hubby I had a drain and I was also 39 so a few things in common. Time will help but it won't be rushed. I apparently tried to keep keep a diary when I started to respond to treatment , the writing is like that of a four year old but I think doing it helped me to orient myself a little in this strange environment of hospital , also everything was like ground hog day. I could greet a visitor, turn away and then greet them again , it kept them amused and I had the endless enjoyment of visitors turning up even if it was the same person ? So short term memory was dreadful but I've learnt to manage it and had to practise new ways to keep the information. The damage that comes with a bleed Seems to corrupts some survivors ability to file and make new memories, those that have need to learn new ways of retaining the information. That doesn't happen overnight. The quick almost photographic way we used to form memory before doesn't keep the picture so well so writing notes really helps, I also find picture and photos help me recall too. Also my filter for all the ' sensory' activity gets really messed with. It's like your brain is really concentrating on trying to heal but then hang on its also got to steer the ship as well so it spends less attention than it did on doing that so we sometimes go off course , slow to almost standstill and bang into things, plus sometimes the filter between thought and spoken word gets broken as well ...I still do all of that when I'm fatigued. Main thing is let hubby do things one at a time, try to get him to pace himself and give him plenty of sensory breaks to let the brain really rest. Keep up food and fluid, don't get tired, thirsty or hungry and One big thing is don't have multiple conversations or talk across each other, if you can reduce background noise early days then that really helped me. mine was over four years ago, it's been a long road but my hubby and kids and I adapted, learnt and evolved. You will find a new normal in time even if that day seems a million miles away from where you sit today. I'm back working albeit differently to before and my life is changed and different but I wouldn't turn back time strange as that may seem even if I do wish I could do some things effortlessly. I won't say don't worry about the change that has come to your family , it's natural to worry but take care and be gentle with yourself , the fear and worry our loved ones go through is huge so be kind to you too. Everyone just has to take Baby steps

Gemma, it's good that you are getting your license back , I'm pleased for you with that as I know how hard it's been to be without it. The restriction is something I was aware of only based on a family member who has a disability that can also change so they re- assess every two year I think for her. As Sami says in that time they may have got to the bottom of things and improvements have come for you but in the meantime I think you may also qualify for help with a car or adaptations under the motorbility scheme , worth checking that out. take care

Hey there Nicky, I'm glad you took the time to post and share your experience. It really will help other people in a Similar position who feel that they too have been stripped of that 'invincibility cloak'. The the early days post SAH are a bewildering place to find yourself to be honest. All that you knew and took for granted in your behaviour and physical capability gets pretty shaken up and then it's a gradual process of tentatively working out what's the same, what's different, what triggers fatigue symptoms. Anxiety is horrid, like you I'd never experienced that fear that grips you , I practised meditation and had some CBT counselling to help me navigate the worst time of that but just keep taking steps, baby ones when needed and some will dance you backwards but it will be forward in the main. You're doing well and the dog walking will help, look up and around and pause as you do. My advice is to try to learn early what your triggers look or feel like that tell you that your injured brain is tiring more easily at that moment , stumbling, losing words more frequently, irritability are all signs for me , and if you can try to heed that early then by changing the pace or just giving yourself some time out then it will help you as you move forward and rebuild from this. Good luck and well done to the family for their understanding . I blogged over the weekend about how finding my new balance level was down to that support, you may find something in it http://popgoestifty.blogspot.co.uk/2016/08/balance-takes-huge-amount-of-practice.html Take care now . Go steady .

Julie, just keeping everything crossed for this Thursday for you and no more upsets with appointments. Just to add I found it hard at first to balance my disappointment and upset , everything seemed to cut and affect me so deeply. I'm sure looking back I had emotional lability for a while as I would cry at the drop of a hat but even now if I don't cry sometimes and hold the feeling back then I will pay for it. Clumsiliy I'm trying to say don't be hard on yourself that this fear and worry about next op is affecting you, know that it is, let other people know that it is too and so you may be a little sharper around the edges and then adopt a little more ' be kinder to self' attitude at least until op is well in the rear view. Good luck x

Hey Jill, good to see you on here, glad to hear you are still managing the pony driving. Does being with the horses help when you have a SAH head? My daughters ride and I found just Spending time around horses in the early days really helped me to reduce anxiety and helped me learn to calm thoughts. You and I are about the same I think in terms of how far on from our bleeds and during that time lots regained but we are still realising what has gone. It's always about the dance between acceptance and ambition. 'Im not sure the damage to our brains ever heals to be honest, that's just my view so only that we have had to adapt and learn a different way of getting to the outcome we hope for with this reconfigured device. Wins right, our ability to process emotional and high intensity is not the same for many of us and so we need to make allowance for that. My girls are 10 and 13 now so were very young when it all happened but they have helped me to increase my stamina again for noise and disruption especially if friends come round but I'm not the mum I was and find a bundle of kids will exhaust me faster than anything. If I'm honest I find holidays hard because there is little respite from demands and activity. Mine are old enough now to understand I have to go off and have quiet time in the day during holidays if they want to have 'useful mum' so maybe that's something to adopt with the littles when they visit their Nannie , you could all practise some quieter moments in the day, bug hunts, drawing scenery, change your pace and teach them as well it doesn't have to be full throttle all the time. Take care Jill and go see that GP,of yours and be honest with him or her, failing that if you have worries maybe phone the nurse helpline of the brain and spine foundation ?

'There' as a destination not so sure , I agree it's people's way of saying hang in there, I know it's tough but it will change . I totally agree with Bronco, it's a nicer way of showing empathy than just saying well here's my pain to share with yours, They are trying to say 'there' is a place where you find a new state of balance, that is more steady than maybe today, with acceptable levels of discomfort and if you keep your course you will get there. It won't be easy but it's maybe within reach....but then of course Paul is right, when you get there you want a new there...:)

Gemma. Spot on. Keep pushing, never give up but always with a care and eye on how you feel and being kind to adjust pace if needed.

Ian, Sami's right, there's no competitive SAHing here. We all survived and have different legacies but all know everyone has it hard some days , in that we are very equal. Post my shunt surgery I suffered a lot of headaches , nausea and pain that just used to come on, no reason and it was horrid and sharp and just really unpleasant to deal with. What made it a little harder as well was as you say you could look fine outwardly to others ( well to be fair my hairstyle was hilarious back then after surgeons haircut) but that didn't represent how you really felt up top. So I adopted and to this day complete a little routine when I feel my head is a little out of sorts and maybe you need to find a little routine that helps you' shut down' each day. i figure after all it's been through a little extra help and gentle touch can't be a bad thing to help close down for the day. So I give myself a very very gentle neck and shoulder rub With a oil which also has an essential oil which I have checked has no side effects for me. Rose. It's very calming, I do it before I go to sleep and it has really helped the frequency of my headaches. Not sure rose is the best scent for a man but even just a calming massage oil which you can get in most department stores would do the same trick I think, but if you do try it go very easy and only do a very short time, no pressure, just very gentle touch really. I don't even ask hubby on this one as then I know exactly what is right for me that day. Also if I have a doozy of one now like Michelle advises I drink lots of water , But I also drink one cola, full fat which is what my ward nurses told me could really help my headaches post surgery and for me that still works. I have no idea why, it's caffeine which probably is dreadful for me but I figure 1 can of coke is worth the risk every now and then. Now I'm not advising anyone does either of these things without weighing up that they are going to sit well with their current state of health but just sharing what's helped me get a little better balance.

What a good idea to blow away some of that memory of the date by taking in big lungfuls of a sea breeze with the special companionship of hubby and hound . Glad you marked the milestone and your efforts this last twelve months and I think it's Fab that your learning piano, how's that coming along?

Welcome to Btg and thanks for sharing your story. It sounds like your ability to stay calm under crisis , probably from your experience in the force , really helped you when you needed it most. Like you i was able to talk and communicate I'm told but I don't have recollection for which I'm grateful because like you I do remember the pain in the days and weeks after and morphine was the only thing that touched it. Funny those syringes though aren't they. Felt like a kid! So do keep going steady chap. Nice and easy does it and it will pay off. Maybe just some practice putts in the garden for now but of course aim yourself for the course eventually but maybe not a full round straight off. Best of luck to you.

Hi Trace. Welcome and well done for making the post, your thread will help someone else 'stalking' the site so well done for taking the plunge after all this time. Also so can I just say I laughed out loud at the hubby comment so thanks for the smile there. to be honest I heard echoes in everything you said. Like you my world is paced differently these days but even then sometimes that still doesn't work and I get all that you describe and nothing I do matters a jot, it will still send me reeling, my worries raised and my pain level back to nearly intolerable. Weather can also knock me off kilter as Win shares with big barometer swings. That said I do agree with some of the caution shared on opiates and if you regularly use them it may be worth questioning and discussing other pain relief options with your GP as they can have unpleasant side effects. Macca gives some great practical tips, all can really help you but making sure I'm always putting lots of tiny breaks of silence and doing nothing for those short breaks in my day I feel has helped me stretch what I can do little by little . But we don't stretch as far or as easily as of old so maybe make life or pacing changesyk what you currently manage. Think about what you would like to do and what is bothering you most and concentrate on trying to improve or change that first, do one thing at a time though as we are hopeless multi taskers now. Tske care

Jan, honestly On recollection found the second twelve months the hardest. I don't mean to say that to distress or discourage only that at that point things had settled from the really early crazy and high intensity painful time and then I started to appreciate and understand my new limits and see the real changes so it was a bit topsy turvy . That said emotions are affected and when you step back it hits hard. A good cry I have found does the world of good but do follow it up if you feel you would benefit from more help or support. I wrote a little at the time about the sessions I attended a few years back now. There was one on emotional changes in that which you can find in this link below, but in answer to your question I do think it's not uncommon to feel as you are. http://web.behindthegray.net/index.php?/topic/2526-my-neuropsychology-appointment/#comment-35411

Jan. I think this is where the regional variations in care and neurological services can show up differently not to mention to across the pond. does everyone get them? No I don't think so and it can depend on severity and grade of bleed as well I understand but typically your would be seen at your treating hospital but the Neurophyscology team, so if there isn't one there then you would need to be referred to a centre where there is one. Another option in the UK if you haven't been referred is to also ask Headway for help. They often have community brain injury advisors who can assess where you are struggling and help you come up with a plan to make adjustments and adapt. In the US I think it's a case of you can get all of this and more if your insurance covers it. My understanding is that if during the recovery it becomes apparent there are significant cognitive changes becoming apparent which are affecting or impeding an individual to maybe resuming independent living , affecting day to day tasks or Get back to work duties. Then often the consulting team/ neurological team including nurse advisors in my case may decide that a Neuorlogical psychological assessment would be of benefit and completed so it's not done in every case and it's seems to be probably less than 50% if we use BTG as a representative sample. Testing allows them to plot where the defects are using a baseline calculated from your previous estimated cognitive functions based on things including education, type of work etc. In in my case the tests meant I was then referred for a series of group workshop to help individuals affect psychologically and emotionally including things like thinking skills and changed mood and emotions but more importantly it was shared with my Occupational Health team at work with my permission so we could create a tailored return which set me up for more chance of a successful working pattern. All the the above is based on my own experiences, others may know more or correct me if wrong in my assumptions

Just to add a pretty useful link which explains some of the executive dysfunction that Greg, I and others have and has been mentioned on this post http://healthdiary.pw/?p=354

Greg, you are right, I have executive dysfunction show quite significantly amongst some other cognitive defects and which to be honest makes me laugh as a title but it shows up so much when I enter a situation where I cannot manage to bring my ' coping ' techniques to bear and the lack of structure then trips me. When that happens it's like someone has flicked up the dial on my battery power useage and I run down energy and cognitive attention quick and hit empty fast, it's not pretty. Hubby and I are better at realising and whereas I used to be the centre of things and love that kind of chaos I now tend to hang in the periphery dipping in and out, ready to hit the road if needed. I hope it will still improve but there are many , often social situations where my senses maybe are being overloaded that I just cannot cope with and it will have an effect so often choose to opt out in advance.

Megan, I'm glad the family gathering was so nice, that's good to add a new memory isn't it but the after effects of travel or change in weather barometric pressure does appear to affect quite a few of us. I'm hoping one day a scientist or researcher will look into it but I'm convinced once the blood upsets that fragile state it cannot adjust as well as it once did. Tina is right, go get checked out, don't sit with that worry and they never mind, they prefer you to be sure everything is ok. I found to to be honest in the early days even just a long road trip wiped me out completely, exactly as you describe but as time has passed I can cope with it more but know it will still take a toll for me. Flying still knocks me out a complete day afterwards, don't know why but it does. Others are fine. Lots of extra water, adding in lots of extra quiet time in your ' busy' family moments and actually just cutting back a little on some of the regular stuff to accommodate the out of routine stuff. It's hard to do but you need to get that balance. you have probably overdone it plus your head is adjusting itself again so notch it all down and build it back up. If it helps I have had to do exactly that this last week when I overstepped my current limits.... Get rest, don't push and be kind to you Megan. You just managed a pretty big milestone in a big trip and family event so well done .

Clare I have shared on here somewhere my experience of my neuro pysch testing ( wanting to answer banana for a lot of things was not ideal) but like others I found it invaluable to have done if exhausting. I then met with my assessor to get a detailed view on the findings but had to take my MIL otherwise I would have forgotten most and anyway couldn't manage journey on my own back then but I did receive a lengthy report too. I had a six session course follow up to learn coping skills and tips at my treating hospital as well but the insights helped me get a realistic plan in place for work which meant that here I am down the line holding down a pretty complex role , albeit a different one to that I did before , but one which I enjoy find purposeful and which is tailored to my working style and capacity. Having the insights meant I could work with my work to return successfully and continue working in a sustainable way. It's been a bumpy road, it continues to be but understanding my deficits has helped me adapt, not always accept but at least to understand and keep moving forward. And yes, look up, those stars are always shining, he's a wise chap our Macca

Richard. So glad you are feeling postive , well physically and that life is veering more towards your 'normal ' post bleed and that the site and all those who share your experience on here has helped you feel more comfortable with what's happened. i can only imagine the same steady hand and nerve that made you a successful surgeon has probably also helped you to face down some of the fears that come post bleed and that's a good strength to draw on, it's one many of us have had to develop and strengthen. I am really glad having that new depth of understanding from your experience will only help you to explore a new style of working maybe, be an even better surgeon, offering a different way maybe to how you connected before. But be kind to yourself Richard as you continue to heal, be your own advocate of what you need to heal without hurting as your brain will thank you if you tread as lightly as you can in these early days with it , build it all back up slow and steady and then the regains are there. Some may end up different but that's ok too. Pop your head in from time to time, it's good to talk.

Nicola welcome to our little band with readjusted noggins. Take it steady in the coming weeks and months and it's so normal to be worried with any little sensation but if you can just watch and wait and just know that it should pass and if you're worried always just ask here or even better with your treating colleagues. They won't mind and they will understand, they would do exactly the same if it were them in your shoes, now is not a time to be bashful. Also Find something that relaxes you and helps you do that as well to help you chill a little as you heal, nothing too taxing and short bursts only. . It's a little different healing from such an invisible trauma and people will see you and think all is fine, but gentle reminders that you need their patience, their help and support in the coming months to go steady is a good plan and should allow you to take the rest and find the pace you need. I can only add just be kind to yourself.

Macca that's a great idea, I will contact them as ask if that is possible. SM I'm not sure to be honest . I have a couple of check ups planned this year, one with the hydrocephalus team in August and another in December for my annual so not sure if I want to spend another full day up there with them brilliant though they are. Also I am not sure how much benefit for me with all the support I have had to date plus learnt from BTG but I wonder if someone who is maybe a little earlier on in recovery might find it more of use and if they decide to go might volunteer to share if they do.

The Brain and Spine Organisation publish a good set of literature on SAH which My family was given after my SAH , they run a helpline which I have called in the past and now they are organising their first ever conference solely about 'life after SAH' this November at the National Hospital in London which is where I was lucky enough to be treated. The agenda looks pretty good, I have personally met the Neuro physiologists speaking as they ran 6 group sessions I attended post my pysch testing over a year an a half on to help me develop some techniques to help cope with my cognitive challenges and they were very helpful and run this course throughout the year so will have picked ul a lot of experiences I am sure. It's a full day which might be a little much for any one in early days post bleed but maybe useful for a carer also? Anyway thought I would share. It costs £10 and maybe worth it for anyone within travel distance. http://www.brainandspine.org.uk/life-after-subarachnoid-haemorrhage-conference