Daffodil

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? 

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 

Quote

Thank you so much for taking the time to reply to my post ?

You have made it much clearer and given me a few options to consider.

I seem to be going through a 1 step forward 2 steps back phase both physically and mentally/emotionally, is that normal?

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. 

Quote

3 hours ago, Jan said:

 

Please excuse my ignorance on this subject, I have a couple of questions,

Are the tests offered to all SAH patients/survivors?

are you tested at the hospital that treated the SAH?

 

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

Sherry, it's understandable to have that worry, I think i Can safely say we have all had that fear at the back of our mind especially in the early days and the advice to talk that through really does help you reach some acceptance of what happened.

I can't tell you that it can't ever happen as I did meet someone at my treating hospital at a recent check up who had a second SAH which wasn't my best conversation ever in a waiting area but when I then asked my Neuro surgeon again of the risk he assured me it was extremely rare for that to happen in his experience.

My attitude is that like Macca says we have to let go of what we can't control. I figure that in the same way I couldn't have prevented my bleed when it did happen I can't prevent another so I just take each day as it comes and hope everything holds fast!

You are such early days in your recovery. The blood went into the place where it was never designed to go and plays havoc with how we feel, our emotions as well as our physical state so be gentle and considerate of that.

It's natural to have fear and be scared and it's ok to say that and even better to ask for some help as you adapt. Go steady now. It will get better, the fear will hold less of a grip given time.

You know what Neil I think we have all flown over Hope Valley every day since haven't we

well done for the baby and big steps you have made and keep on keeping on. Go steady with things but still pushing the envelope nonetheless.

Dear MOF. You have some great advice from Macca and Sarah Lou and others already which I hope helps you. The first step though is to give yourself a break and not be so hard on yourself and then See if you can make some small changes and create some new habits that might help your brain with its efforts.

The fact that took me a little getting used to is my brain just can't absorb and process the way it used to and I was going to have to take steps to protect myself in that and change how I might have done things.

You talk about being cranky and that is easily my biggest sign that I am in need of extra 'quiet solitude' , that's and losing or muddling words. What comes next is my balance goes and I literally will be in the floor so I do well to not ignore them.

I call this time my reboot moments and my girls are quick to tell me and then I take myself off, sit quietly with no other distractions and just be still a while. I personally practice mindfulness meditation but maybe find something that works for you to help just quiet things down. If it's really bad then I just have to stop everything and sleep and I don't rail against that now as I know it's the only thing that will work.

Pacing is something to be learnt. I hate the word, I rebel against what it means and what I have lost but without pacing myself daily then I actually can't do half the things I now do. Slow things down, do them one at a time, plenty of breaks in between. Ask people to have patience or for help. Explain you can do something but only after you have had a time out.

If you have just done something that takes cognitive effort then take a moment to pause before you go onto the next. If there is big emotional upsets or worries then pace yourself even more as these are energy drainers.

All that said I then still have days like you describe where everything slows, words gets lost, balance is gone but they pass but like Sarah lou do get checked out if things are deterioating. You're no battle axe you're just adjusting to life with a wounded brain.

Hey Sherry, welcome to BTG hopefully if you read up some old threads and ask your questions here you will find a little reassurance that is going to help you adjust as you heal.

I was 39 when I had mine, two young kids and like you as well they used to joke when I messed my words up which I did frequently. I would lose them and transpose them and it worried and upset me. I had neuro physiologist testing of my cognitive impacts post bleed about a year on now know this is the affect on my short term memory but it has really improved. It is normally a good indicator that I have done too much and need to rest,

Over four years on if I have overdone my limits then my words will start to disappear I can't find the right one so maybe just be conscious that whilst you are coping your brain is also doing a massive amount of healing unseen to you so if the words start slipping it may be a quiet rest is in order.

Being someone where there is too much going on can be too much for the brain to process early on or if you are tired. Read the letter to your brain which is pinned in the forum, you may find that helps you to be kinder to yourself. The brain is the control centre , it's going to need a gentle approach to be able to heal after its trauma.

Anxiety is also incredibly common post SAH so don't suffer that in silence, go talk to someone and get some help with it. It will improve but don't let it grow unchecked.

There are plenty of great tips and experiences shared on the forum that I really hope will help you. Take care now.

Laughed as thought win had called you Doc Hopkins! Hi hope you are doing ok.

Main thing is to check with your Neuro team to make sure but if you are discharged, physically in good condition then I imagine they will tell you to just build up slowly and gently and no reason why not.

Remember you had brain surgery very recently with clipping so probably no inverted moves, I can't do those now at all but have a permanent shunt placed and it's just uncomfortable but I do a small yoga based stretching routine every morning and there are plenty on here who are back to running, again that's not for me , I go walking with my stick But take baby steps, show moderation and gradually ramp up and listen to your brain, it'll stand you better in the long run.

Headphones, used mine ever since and no issues to report.

Hey Rachel, welcome and you have some great Insights shared already. I had hydrocephalus and now have a shunt and like louise am very weather affected which affects my pain level plus have fatigue which limits my work hours but Sarah Lou said it well in that you become more used to it.

I'm four years and a half years out and can do things now that I couldn't even two years ago, i have much less fatigue than I did and hope that that recovery and gradual change continues and i have hope it will.

Headaches are hard though. are you doing too much maybe? i don't have daily ones like you and definately you should get that checked out but also we don't carry stress at all well now. My personal theory is our ability to process any chemical change in our brains has been compromised.

So for instance just before my period I get a whopper of a head now , previously it was not much to write home about, now it's a shocker, same goes for grief, tense situations and pressure, all land me needing absolute still and quiet yet were things I used to take in my stride....so Win and Louise share their great wisdom when they says avoid stress. We can't absorb it the same way and maybe that's something we all have to learn to live with, pacing ourself and knowing what takes its toll .

Be kind to yourself Rachel.

Hey Michelle, sorry I missed this.

It's good feeling putting that distance between us and the darkest days post bleed and our anni-versarys mark that. This progress you have made will only continue for you as you learn even more about those niggles, gain confidence in knowing what affects , learning how and when to take a break and just generally getting to know more about this new model brain we all now work with. Good luck

Take care now. Onwards!

Gail, positive vibes winging their way to you. Go steady and take it easy in the days post op. X