Daffodil

3 minutes ago, Broncothor said:

This is what happens when you self massage while typing a post.  She almost went to sleep before the sentence was finished!

Oh my goodness. End of day attention to detail example right there...but yes I am heading for a self shoulder massage early tonite Bronco! 

Myra, wow, first well done for getting back to work, I imagine that is incredibly important to you and definately will help with confidence which gets knocked after an event like this.

Great advice for you already in replies but a few suggestions from  me to help with the practical toll of working in a cognitively demanding environment like a hospital. 

1.The lights in hospital are bright and harsh I have always found, so maybe you could invest in some tinted lense glasses just to take the edge of the harshness.  I wore sunglasses for a long time when in bright places and later at work meetings, not suggesting that will work here for you but just a little tint may be worth a try to see if it helps.

2. When you have encountered a fast or intense time or situation at work try and just take a moment and pause. Easier said than done I know as a nurse but even if you can just a shut your eyes for 30 seconds and just listen to your own breath that will help put some breaks in and help your brain have a moment in its hard work. Tiny Pauses between every physical task can really help, get in the car, pause. Turn the ignition. Pause, doesn't have to be long but if you can it just helps the brain take the little extra time to make the shift whilst it is healing. 

3 Getting to sleep. If you can practise and put in place some wind down routines that help you slow things down  at the end of the day,take a bath or shower with body wash fragrance that you like that relaxes you ( lavender, rose are good )  not one that energises ( save that for the start of shift , think grapefruit and citrus) and then no screen time for at least 30 minutes before trying to sleep. I also self massage my shoulders before sleeping just to signify to myself that now it's time to settle and slow m it can h lol the brain stop racing. 

Good luck. Keep us posted. 

What it should say is: I also self massage my shoulders before sleeping just to signify to myself that now it's time to settle and slow down and it can really help the brain stop racing. 

Debs, firstly my apologies as I have completely missed your posts until now...I have just read your introduction and GP post and then this one. Sorry it's been such a hard time and Well lovely lady you may need to turn the activity dials down if you can at all and just go right back to basics of being kind to self.

The horrid effects of stress that canny Win mentions is correct. I have a theory that the chemicals induced when we are stressed are not tolerated very well in our new corrupted state. The brain can't process or filter the effects as well and everything gets magnified and feels dreadful, and then we worry, which is horrid too and a vicious circle happens. So when that happens you need to slow it down, stop, sing, rest, be still and you know what maybe invite your daughter or whomever you are with at the moment to join you in that stillness. It won't hurt them . 

the weather affects my energy and pains levels shockingly. I blame the fact I can't read half the posts on here at the moment on the fact that my energy bank this time of year drops even lower than its shockingly low levels of normal making it harder for me  to be able to keep up with what I can normally manage. So I have to adjust my patterns and I think possibly you might need to also.

Rest when your daughter rests, don't fill it with things you feel you should do, ask  people for more help with cooking or chores if you're trying to do all that, freeze meals, do whatever it takes to allow you to find a balance that works today, and tomorrow adjust again, keep observing and noticing and adapting. 

for most of us this adjusted grey matter just doesn't bounce right back and allow us what it used to, I think joining your daughter with the regular meals and rests might be a good idea, and maybe that's something positive right? you can help and encourage each other to both get to a steady state and regain health for both of you in your recoveries. Do it together, 

So  this conference went ahead and the speakers have all shared their presentations which you can find visiting the Brain and Spine site http://www.brainandspine.org.uk/news/201611/bsf-organises-uks-first-sah-conference-patients-and-carers and following the links for the slides. It apparently was good and I thought worth sharing as I thought some good information in the slides. 

Kavitas video log of her SAH journey is worth a watch if you have some time on your hands and the slides from Clinical Neuropsychologist Dr Lynne Aitkenhead slides cover memory and cognitive problems after a SAH and stressed the fact that short term memory loss and attention problems are extremely common after a SAH but there are many things you can do to improve your memory such as keeping a diary and using certain mobile apps that help manage daily life.

Clinical Psychologist Dr Sabah Khan ( who ran the sessions I attended at Queens Square) talked about relationships after a SAH. Her talk was focused mainly on analysing feelings and psychological behaviour of couples affected by a SAH. She explained the processes and stages which people go through if they themselves have gone through a SAH and how it affects their loved ones. I would have loved to have heard that one. 

If anyone reading went along it would be great to have some nuggets . I still think Brain and Spine do the best literature on SAH, it was all we as a family were given and theirs and Headways booklets were so helpful in my early understanding 

No competitive SAHing on here Reinfield. pain is pain and we each walk our own path.  Experiences and feelings of bleed and adjustment to life post can be shared freely without comparison, it's just about reassurance, empathy and knowing you don't walk alone.

I had a couple of surgeries requiring the 'surgeon haircut'. The first time a burr hole for EVD with a great fringe combover to hide it but post shunt placement I was left with a complete shaved back of right side of my head and what I described as a small shark bite on the back of my head.  And yes it really made me sad at the time mainly because I couldn't hide it and i could see it scared and reminded everyone else of what I was going through and in turn that made me sad I was worrying them so much.

Time passed and I wear my hat now not to hide the scars as I did then but because it helps my head with weather changes, too much wind or cold is no good for me. progress. 

Thing is those very visible wounds were actually a great reminder at the time to be aware of the trauma which caused them which itself was unseen and set a pace that about matches how hair grows back. Slow it may be but it grows given time as you will find as more hair returns you match it with a new pace that's about right for that moment , and the next, and so on.

Take care . Glad you are going steady 

David, wow that's an inspiring story and I'll be honest, hearing from someone that's far into post big bleed territory and living with a shunt is good to read.

You have done some amazing things and feats so far and so glad they picked up and helped you in 2013 to get that sorted early. 

Hope you find the forum a friendly place. The naked blue is probably not something I'd think of doing , was it for a special cause like your Headway trek? 

Anyway keep on keeping on, you're a helluva survivor. 

The best advice I had was there is no point putting all your energy into one place, if you do that you may find there is no space for all the other things we need and like to do and balance is I,portant in life and living. Susan it's good you are finding that. Pacing your levels is important but done across many things not just one thing to the exclusion of others. That builds stamina too.  

Finding out what is your new tipping points, your new tolerance and capacity, well it takes time and worry not about others opinions whilst you explore that. Opinions are like armpits, everyone has them, but let's just say some stink the place up ? Only you can do what you do, do that and hold your head high, most people are rooting  for you to be ok and the ones that aren't, well they are best left to their own devices. 

Greg you are so right,

This is a good visual of the battery analogy and it was shared by Brain Injury Awareness the other day on their FB page. Credit and visual rights for the picture is with them but I think it's helpful to explain to others and a battery pack is often used to explain the fatigue.

Graham, it's a big change for you but remember you aren't trying to prove what you can't do more it is you may have to work harder to do it now or it just takes longer so uses far more energy  Hopefully no one is trying to trip you up only to support that this where you are for now. 

I do 18 hours a week and it's taken me this long and a big effort to get to that...we all find our own rhythm and pace. 

Graham, 

There's lots of different tests, some memory, some logic, and it's assessing any gaps or deficits compared to what they would expect based on your age, your education level and other factors. 

The tests can be pretty exhausting I found, so if you are getting there by car get someone to drive you if you can and rest afterwards. Also I took my MIL , or should I say she took me and she was allowed to sit at the back whilst I took the tests as I had difficulty recalling conversations at the time and it was useful for her to be able to ask questions at the end that I was too tired to ask about.

So my best advice is to go with someone if you can even if it means they are waiting about , drink water, be prepared to be wiped out and that's about it.

I wrote a thread about my testing on here somewhere...my funniest thing is that during mine I got stuck with a thought  which made me want to answer all questions with the same answer  ...banana...which made me get the giggles...but I stopped. Explained what was going on. Took a moment whilst we all laughed and then we carried on. 

Good luck. 

Quote

He is more cognitively challenged now since the second vp shunt.

Hi heather and hi Gordon. Welcome to BTG.

Its been a bumpy road for you all and whilst I am hoping for smoother travel now it may be quite a long drive so best pack plenty of sandwiches and plan lots of rest stops along the way ! 

Right enough enough of the silly analogies. Seriously I hope that the fear is subsiding a little for you all and things start improving.

I am not surprised he is more challenged after the shunt episodes to be honest. The feeling of going high pressure is one I recall very well and it slowly shuts of your senses and functions one by one and then coming out of it either from EVD or from LP or shunt is like dealing with the worlds worst and longest hangover and that takes time.

I came home post a 7 week stay and big bleed having come off the EVD...the hydrocephalus returned and back I blue lighted to hospital. Plenty of lumber punctures and I then had my shunt placed and it took a fair while and I needed some adjustments before I found a setting that worked well for me. Until that happened my cognitive function was dreadful and I suffered a lot from pressure side effects. 

Gordon has had a lot of brain surgery in the last few Months which have in essence assaulted his brain which was already trying to cope with the effects of the bleed so it is left reeling but give it time, nurture and gentle encouragement and there will be progress each day. 

Headway were great for me so hope that that helps him too. The effects of the hydro is like someone having squeezed your head very hard and the kit in the head also takes some adjusting to and the scarring is painful.

I found the following helped me, they help I think generally post bleed anyway but more so if you have a shunt. 

Lying propped upright , never totally flat to sleep.

Not letting myself ever get hungry and drinking plenty of water

Dulling the sensory impact with ear plugs and sunglasses

Wearing a hat especially in windy or very cold weather

Take care both.

Louise, I agree with Sami , you helped make my post SAH world a whole lot less scary as I suddenly understood that whilst things were vastly different that didn't have to mean without hope. That and the fact You set my mind at rest over my shunt barometer head. 

So keep on keeping on lovely lady. You say you haven't worked but I beg to differ, you have worked hard every day since! Xx

Hi Verna 

its a natural fear shared by many of us. I'm not sure how long ago you had your SAH but the anxiety and fear is heightened during the early times and any twinge or pain that is new, and there are many, make your fears scamper straight to the possibility of another SAH. But it really is unlikely and the feelings are in fact your brain healing. That's what I told myself anyway, 

Counselling is important, not trying to cope on your own or bottle this up. Ask your GP and come here also if that helps you to get some reassurance too. 

Basically in seconds our lives transformed and we are left getting to know the impact of our bleeds, each of our deficits as unique to us as our individual brains. It's a lot to accept. We have to grieve what we have lost and then accept the new normal of our adjusted state and that takes time and helping hands. 

My most practical tip tip for you is to keep a small notebook by your bed and when you wake write the small things you want to do that day, at the end of the day tick them off if you can but then add what was good about that day, what made you smile  track Your fear level as well  if you like but just give it a rating out of 10 and then pat yourself on the back for the day. Baby steps Verna. It gets better. 

Gemma. Just sending you all the best for the angiogram on Tuesday. 

I can remember only too well going into the National for mine and seeing all the people gathered around the bed and screens, it was like they had sold tickets...actually before hand I got interviewed but one of the wonderful doctors on the pain team which was a little bizarre but it took my mind off things. But they are a fab team which you know so trust in that. 

Download something good to watch in the time on your back lying still afterwards. Like you I had an overnight stay post mine but my best advice is make sure everything is as neat and tidy as you would want it to be if you catch my drift and I'm sure all will be well. We will be thinking of you. 

A lovely post from Tina which I hope will allow you to take hope that there will be improvements, they will come and creep back into your life but you have to start with being kind and patting yourself on the back for what you are already doing and how far you have come from that bleed.

Hydrocephalus I think is a strange state and condition to live with and having this adds complexity to the healing from a bleed, I have talked at length with my doctors about this and wondered about how the brain compensates to its 'cleansing' system not working so efficiently. 

It's amazing we have this contraption of a shunt which keeps us alive but at the end of the day it is a very mechanical and clunky solution for what is appears to be a very complex and continuously adjusting state of our cerebral fluid and that can just add pain. Heaviness is something I battled with for the first couple of years. Maybe capture and note when you feel any slight improvements, or when things are worse. Maybe try sleeping a little more upright. Keep the fluids up, it's a education now to learn this new adjusted state. 

I met someone who had a shunt, not from a brain bleed, who said it took them three years to become used to the new operating pressure...I didn't want to hear that to be honest but looking back I can see that it was only about then that I didn't have so much of a reaction to medications, or changes in pressure.

It was as if it took that long for my body to realise that how it functioned was with a new level of fluid...not sure if that makes sense or just sounds nonsensical but if you can make allowance now and give your body time and space to heal then I think you'll find that you will continue to regain and improve. 

Good luck. 

Hi there to both of you.

So I'm going to suggest doing things in really small bite sized chunks as it can really help try you ease the headaches back to a tolerable level. So do something but then stop and rest before going on and doing something else and in that moment of rest as Michelle's says drink lots to rehydrate and also top up your energy levels with regular food intake, don't get hungry.

Headaches for me stayed quite a while to be honest but the intensity of them diminished as I learnt to pace myself. I realised that I had to make good choices about the energy I was using. The brain is healing so it makes sense it hurts if we then ask to much of it to do other stuff. Once I started to understand that It meant less having to use painkillers as well. 

Also it can be worth her getting bloods checked with GP as well as both my potassium and magnesium levels were a little low post bleed and my ops but which I was able to boost with food that contained both. 

But just to add that its not uncommon to have that fear, that worry that it's going to happen again. I can't take that away from either of you but I can tell you that you both will gain confidence as time passes. Don't ignore any pain that gets worse but if it stays the same then hold hands and wait for it to settle and if you can get some sleep then it will do the Both of you good. 

Luke, well done indeed for giving mum the help but also standing back and letting her own and find her own achievements each day. That will help her confidence , her stamina and also give her independence so she feels less reliant on you which us proud mums like to feel. 

Great work and hope you are looking after yourself also.

Take care. 

All of us are different in our bleeds, our experience is unique to us  which is one of the trickier things that comes with our new found adjustment to the new state of us. Yes we can compare, we can definately learn from others having trodden a path before , BTG is a sanctuary for that but at the same time we have to work out our own possibilities within our own recovery.

I had a pretty major bleed, level 4,complicated by hydrocephalus which then returned after a length stay requiring even more surgery to bring the permanent additon of a shunt into my life equation. The prognosis once I left hospital was pretty much " just do what you can" and so ever since then I have tried to figure out what that "can " is.

Working and the return to it at the capacity I had before has proved impossible for now especially keeping the balance of home life with two young daughters so I do it differently these days but I think just being curious about what might be possible in a new way has been helpful. 

We all know about regains , or retrains as I now think of them , and we learn about pacing, about spoons and we make sensible decisions every day about how doing something might mean not doing something else. Thing is whilst doing that I found I was becoming less open to stepping outside my comfort zone. So the further I stepped in my recovery , the steadier I was becoming the less I was likely to rock that boat so this week I rocked it.

I really pushed myself physically and cognitively and whilst I couldn't do the entirety of what I set out to do I learnt a huge amount on the way and feel a little more positive as well that this recovery of our is definately something I'm on for the rest of my life and that it's kinda cool that I get to understand and really try different ways of doing things. 

I havent been been online for a few days as of course the efforts of my adventure wiped me out totally but that was worth it and I 'stopped' before it became painful. And I mean I really stopped and switched everything off. My mum even brought meals on wheels whilst I rebooted. 

So that's what I wanted to share. We get to know our traffic lights system , our Red Amber and Green moments and I guess I wanted to say pay attention to them all but always listen to the red and then at that moment really do stop because then you will be able to go again when the green comes around. And who knows we may go even further ?

If anyone wants to know what I've been up to they can check out my blog , link is on my profile page. 

Go steady and keep being curious everyone to your new possibilities and of course always keep singing. I did a fair bit of that this week Win. 

Luke. I went along to a group at my hospital some time after my SAH and we discussed smart watches and other prompts. It may sound silly but we all shared the view that the prompt itself works to get your attention , it's just that you then can instantly forget that prompt so you have to work on filing the memory better in the first place.

I still often forget to take my phone somewhere or get a reminder only to then completely forget I got it. My family are my best reminders these days and know that they need to put something in front of me and make sure they have my full attention when telling or asking me something.

i would suggest a time which is regular each day where you sit down and slowly go over what you want to remember for that day, get her to write it down in a planner, or on a device, that way it help her build and file that memory properly, then adding a smart watch into that as a reminder may work really well. Let us know if you try. ?

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 .