Daffodil

ADAPTED

By BTG member Subzero 

Onward sharing or  publication by his permission only. 

There`s no going back

To your previous abode.

No, SAH has led you

On a different road.

There`s no going back

You`ve a new life ahead

Confusing, upsetting

And at times full of dread

There`s no going back

There is no quick fix

But you`re building your new life

With different bricks.

There`s no going back

BTG wants to help you

Their message is clear

Rest-drink whatever else you do.

There`s no going back

We go forward together

Each day in our posts

We give help to each other.

There`s no going back

With these highs and these lows

And our will getting stronger

The end result who knows

But we are going to adapt

Our work may need to change

Take account of our brain

Our schedules rearrange

But we are going to adapt

House work can wait

As I negotiate with my brain

On how much it can take

But we are going to adapt

If I take too much on

Fatigue will soon hit me

And I won`t get it done.

But we are going to adapt

Each day helps I feel.

I must not be impatient

Give my brain time to heal.

When will we arrive there?

We are all different you see

The road that you take

May not be for me.

When will we arrive there?

I`ve come to accept

That each day brings new meaning

Things I didn`t expect

When will we arrive there?

Please..family…wait and see

I`m confused and uncertain

Please be there for me.

When will we arrive there?

There is no way to know

Just hold my hand tightly

Where ever I go

Hi Sal.  I completely understand your worry but try to relax when possible, stress is not good for anyone and the good news is that by finding them they will be able to discuss with you what , if anything, they will do. 

I had a SAH back in 2012 which ultimately required me to have a shunt placed as well. The aneurism was coiled but due to its tricky location I have a slight neck on it and it was also discovered I have another small annuerism which they don't think requires any intervention. Because of this I was scanned annually for the first few years to track any change and now I have scans every two years. I expect it will push out a bit more at some point if things remain steady for me. 

living with the knowledge of this is fine, it rarely crosses my mind, I feel I  have been lucky to live through my SAH so I am happy to just trust that everything is going to be fine and just deal with it if it means I need more surgery in future. 

Please Get on on with your life, don't stop doing things you enjoy but yes maybe postpone US trip plans for a while but once you have had your appointment you will know what they will suggest and hopefully can get that organised. 

Cassandra, what a relief to have that lifted and glad they got to the bottom of it, I did wonder if it could be shunt malfunction as the symptoms sounded like pressure challenges but so sorry you had to have yet another procedure to get it resolved.

What you describe sounds like my feelings after I had the shunt  placed, I had had a good few months( not as bad as you poor thing) of being high pressure and then going really low with all the LPs etc then going back up again and if you think about it this puts the brain surface under a lot of stress with all the wrong levels of CSF.  So take Lots of regular meals, don't get hungry, drink plenty and rest and with time hopefully some of your residual symptoms will reduce as well now. 

I'm Sending you gentle vibes and postive wishes to now have a slightly more steadier time with it all so you can get on with the business of healing.

take care now. 

I honestly can't say Julie so definately speak to GP and seek their opinion if you have had clipping. What is without doubt in my mind was you have to notify them of an SAH even if you didn't have surgery and then go on to have your GP declare you fit to drive. 

Below is what I wrote in the thread back in 2013 I think which you can find via the link  in my reply above; my opinion hasn't changed since then and I read every word of the guidance and spoke the DVLA many times whilst I waited for my license to be reinstated. My two operations meant I didn't drive for over 13 months.

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My understanding from talking to the DVLA a lot is that if you had a seizure, a EVD , a shunt placed or clipping then it is 6 months clear from any of these episodes ( plus the lag to get them to get clearance from your consultant which takes AGES!) if you have just coiling then it is handled on a case by case basis but you need the DVLA to confirm that your licence is still valid. But it is a minefield of confusion and no clear answer...what one medical person says another disagrees with....best of luck.

But this is just the interpretation I have made, others may differ.  

The indomitable SUper Mario. It is only because of you that I thought to myself, ' yes you can do that too, so get yourself on a plane, don't be scared' . That was huge for me and I honestly think of you every time I get on a plane now, which certainly isn't as often as you though! 

So thanks for treading the path before us with courage and sharing with those that follow that whilst life may change our path in the blink of an eye  it doesn't have to be broken or empty, there is still plenty to do and see.

PJ, welcome. fiRstly well done on getting off the cigarettes, that's a big deal!

i am hoping that your work will be happy to look at the fast return you have made and maybe together work with you to adjust it down so it is a little more paced over time and eased back in to things.  Talk to them about adding in extra breaks when you can just take yourself off and sit quietly and have some water.

are you driving to work too? When you get in the car to go anywhere in these early days post bleed  that's going to use lots of cognitive energy so just pause and take a few minutes just sitting and composing yourself before starting any journey. Settle yourself, and put a pause in.

i am hoping you get the opportunity here to reset the pace of a few things, you may have rushed back at life full of the adrenaline of survival but now you need to get down to the lengthy business of invisible healing so be gentle with yourself and turn your dials down a notch.

Most stuff can wait I have found, it can be done slower or later or differently. Give something your full attention rather than try to juggle tasks, make lists of what you want to get done or remember and be realistic, don't overstretch all the time. Give yourself a break. 

If you do do something then afterwards rest your brain and give it a moment and the time to recover from what it has just done. Think of physical training in a gym ,  you can't just go from machine to machine without rest breaks for muscles. Everyone gets that, well your brain is a muscle and you hurt it so it's going to need more frequent rests and refresh opportunities. 

The good news news though is that if you do all that then hopefully you will over time find your level of healing and  recovery and explore new ways of doing things and who knows maybe even enjoy it a little more. 

Good luck. 

Smeg, so much information on her about driving post a bleed. It's never clear cut I am afraid as there is confusion in the exact process but I posted links to all the current guidance here 

basically here is my summary and opinion of three 'typical' scenarios.

1. Bleed but no anneurism and no surgery

You have to notify DVLA, a brain bleed is notifiable condition and even if you are not choosing not to drive if you are in possession of a current license you are obliged to inform them BUT if you are seen and cleared to drive by the GP then you can continue to drive. They can give that assessment and the DVLA will accept it. This is like assessment they often do post stroke or TIA

2. Bleed but with clipping or EVD placed.

 You have to notify DVLA as the anneurism bleed is notifiable condition and that you have had invasiv surgery . Typically have to surrender license and it is minimum of 6 months clear of episodes since surgery until you can reapply and then you have to wait until you are cleared to drive by the treating neurosurgeon report back to DVLA...this takes time....only then can you resume driving.  

3. Complications like hydrocephalus or balance or eyesight challenge post bleed.

these can all require further assessment and even driving tests from DVLA before a license is reiuused so allow for this. The six months 'clock' starts from each intervention so if like me you had the SAH and then later had a shunt placed it is the last procedure they count out from.

whilst you are without licence in the U.K. For medical reasons You can apply for a free bus pass which is helpful and you can also investigate Access to Work which can help with transport if you are back to work. 

Jan I do think that to get to destination Adapted you do seem to also have to visit a place called Acceptance a good few times as well along the way, I'm thinking of getting a timeshare there. ?

Some great advice and we do understand the worry . Any operation brings fear and worry and your daughters care adds another dimension to consider but I think Sarah has said it better than anyone, be brave , brace yourself , take a breath and make the call! 

By having the procedure now you are cutting your risks of a rupture which brings much  more of a complicated outlook even after a surgery and of course you yourself know of the greatest risk through your own losses so smile at those surgeons and say thank you very much when can you fit me in?  

Robert, sounds like you are beginning to see the signs of fatigue and rather than fighting them are noticing which is good, it will help you adjust how you react.

i really hope the appointment goes well for you this week. You have a very busy life with work and the kids and whilst that is what you are used to it's ok to sometimes just try and inject some pauses and spaces into that whenever you can. 

Maybe the kids can help with that sometime too. Try a game of 'sleeping lions' whilst you hold the babba sit and be the judge , doing that can offer just a 2 minute moment of stillness which can help. When I was struggling I used to just climb into bed with the kids put on some nice music and we would all crash out, not the best parenting maybe but it worked for that moment, that time. Be creative ! 

Notice what's happening. Is there lots of competing demands, it's ok to ask people to do things one at a time, it's actually more efficient that way.

Losing or jumbling words is one of my first signs I am overloading, you will need to notice what your own triggers are but if you can make some adjustments at the time you notice the, and just be kind to yourself first than I hope you will find things less of a struggle. Keep talking and keep going chap! 

Hi victoria

i feel for you and I really hope you get a chance to sit down and really talk about what life is like five years on. I am similar to you in timeline and also in level of bleed etc and I know that my hubby will often always look on the bright side so much in terms of what is possible that we both get carried away and then I pay the price head wise.

i guess emotionally that's how some people cope, just keep doing what you have always done and everything will be ok but it's time to accept some changes.

im just going to quote from the pinned post on the SAH forum: what happens to us 

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2. How it affects relationships.

Unfortunately we may find ourselves caught in the trap of needing others to help us and not feeling we have the right to ask. We fear we will be judged stupid or lazy or not doing it right and so on. If we have always looked after and protected others emotionally it will feel very scary to be looked after.

 

If we have never openly and honestly expressed our feelings, this is a tough challenge indeed! Whatever patterns have been operating in our relationships will be highlighted with a vengeance now, resulting in despair and thoughts such as –

 

• Why isn’t he/she there for me now I need them?

• I can’t tell him/her the truth about how I feel, it will do them in.

• I’m on my own with this.

• If I just pretend a bit longer, it will all work out.

 

It is very common for the spouse or close relative to also go through the stages described above – but that doesn’t help you! Unless you can find a way to talk about it, and get support (both of you) from someone other than each other.

 

At this time it isn’t possible for two grieving people to be there emotionally all of the time for the other. Your partner/spouse/relative/friend will begin to feel overburdened and resentful, because they too are coming to terms with this unexpected and shocking change in you and in their lives.

 

They had an expectation, as did you that you would be growing old together in a particular way and all that has been shattered. They will be afraid too. It is absolutely vital that you find a way to talk about it. Open and honest communication is the only thing that will work.

 

Even in relationships where honesty, openness and acceptance of feelings have been a foundation, there will be rocky times. All change brings up our fear – when we don’t know what is happening to us or what might happen next – it can feel like an earthquake has occurred.

As Macca says. Talking is the way out of this. Lean in to each other . X

Robert. So glad  things are going ok. I found Headway a great help to me and in fact I spoke to my assigned Headway nurse just last week as I had had some issues and felt she could help me make sense of them. She did and lovely that even after this time I can still get in contact with them 

Keep noting the signs and go steady, it's not a sprint we are on. Oh how is the book going? 

Hi Deb

I have used Staysure a few times but last year they really hiked their premium for the same cover and I used Insure&go for a trip last year who were very helpful.

its important to declare the SAH but typically if you have had no overnight stays or interventions, then you should be fine. Different countries can be more expensive than others so Spain I understand is quite pricy insurance wise or so I have been told. 

My insurance hikes up because cause I have a shunt and hydrocephalus and another aneurism so I would just say get the details of your SAH from your GP, and yes they will provide it, possibly get a declaration that you are fit to travel if the SAH was quite recently , less than 6 months and then start the ringing around and I would ring as otherwise you end up filling it all online for quotes and then you get the ' we have no cover' ..so my advice .find a few you like the look of and then ring them before you book anything, 

daff 

Hi Cassandra, good to hear from you and hope you are doing ok after your recent surgery.

I agree with Paul, I wouldn't just leave it without question and would get it checked as vomiting should always be questioned.

One thought, before you had the surgery recently to unblock the ventricle were you being sick then or had it stopped? The reason I ask is that before I had my shunt placed I become used to operating at a high pressure of CSF and when the pressure was more normalised  it echoed  the effects of low pressure which for me is always vomiting. 

I had a time before having my shunt placed when I was building very high pressure and so when I had multiple LPs to drain off excess fluid and then latterly had the shunt placed I was being sick all the time and had to lie flat a lot. I also had to have my shunt setting raised as I couldn't adjust to such a low setting. 

One tip at the hospital I was given when I felt this awful was to drink some full caffeine coke. Now I, not suggesting that you max out  on caffeine but if it is sudden when it comes on then maybe just try that and seeing if it helps, I now keep cans in the fridge and even if it's just a placebo effect I'll take that .

Good luck, do go get it checked out and let us know how you get on. . Hope summer is australia isn't being too warm . Humidity can really affect me also so that's worth bearing in mind too and mayb noting if any change of any weather has an effect. 

Ps My vomiting stopped a few months after shunt surgery. 

Deb, I don't think you should just put up with it. As I mentioned above I had more than my fair share of LPs post SAH and also again later just before having my shunt placed and each time this played havoc with me causing considerable back pain. It seems inevitable to me that the spinal nerves are on occasion affected or at least irritated by these procedures, certainly the blood irritates as well. . 

Once I was able to , after leaving enough recovery time following the shunt surgery which including incision through the stomach muscles , I was able to start a very gentle exercise routine to regain some amount of the stomach and abdominal strength I had previously had and this I think more than anything has helped my back pain. As I said I couldnt walk unaided initially , I now do two long walks each day. 

Core strength gets wiped out I think by this kind of trauma and also the delicate ecosystem  of fluid around our brains and spines is disrupted which in turn can show up existing weaknesss so I think you just have to gently find a way to establish a new core balance at pace that suits you and as much as your pain during recovery allows.

BUT the other thing is it could be you are doing too much and this is where the signal is showing  up. Keep a diary, see if there is a trend But don't just suffer in silence. Never do that. X 

Amy. I had dreadful back pain and in fact couldn't walk unaided for quite a while afterwards, that could have been due to lying flat for so long or the number of Lumber punctures I had  but either way it was a most unpleasant side effect.  

Blood travelling into spaces it shouldn't be can cause havoc and the only thing I found was heat packs, gentle heat as you say and keeping my meds going oh and just plenty of fluids. 9days is no time at all and the amount of medication I was on at that point was mind boggling and if I went past the four hours I can tell you I was begging for more.

I can't comment on the ones your husband is taking but one thing that stuck with me from advice I was given was that in order for the brain to get past the messages of pain you need to be rested from the pain itself so not allowing it to spike and that's what the pain relief does.

Prior to SAH I hated taking any pain medication and so after I finally got out I was trying to be 'brave' and battle through until the Pain clinic team explained to me that extending time between my pain relief actually wasn't helping in my case as that used more brain energy in dealing with the pain. 

So so I guess my advice is keep taking the pain relief under usual guidance , yes it's good to get off the really hard stuff but give it a bit of time but if your husband feels his pain is getting worse then it may be worth checking back with the treating hospital. 

Hi under the sea.

Saturday probably feels an age ago to you but it's a very short space of time for the healing process that your mom has got to go through. To answer you question I apparently talked very soon after coming round but it really didn't make much sense for quite a while and also I had no recollection of who was there visiting which could be very worrying for people. 

It was well over two weeks before I was well enough that doctors and family would even let my daughters come visit and to be honest if you asked them now they would tell you that they hated the neuro ward and what they got to see there and how I looked.

I'm not trying to scare you honey just to say that your mom right now would want you to just keep sending her all the get well vibes you can but to trust that she will be fighting hard to get better.  As the docs saying she is doing as well as she can be expected. That's a good thing honestly. 

So sharing below some practical things you can do before going back to school on the 17th that I promise will help mom worry less about you because believe me the only thing I did absolutely know is I needed to know my babies  were ok.

• Keep a little daily diary of what you're doing and how you're feeling, you don't have to share it with anyone  but it will help you I promise
• make a little video ' hellos' for mom that maybe someone else who is visiting can show her when you can't get there.  My kids did that and I loved seeing them.  
• Make a little pack of photos that she can look at and keep by her bed of you all together. Again this was lovely for me.
• think about what mom likes, what body lotion  for instance and maybe make sure she has some of this at hospital with her.
• Talk to a friend, an auntie or someone you trust about how you feel. No one can promise you it will all be the same as before but this is a tough time for you all so ask for help and don't bottle things up.
• if a friend or family friend offers to help practically, like with drives to school , lunches, meals etc then say yes to it all. People like to help and I expect your mom would do the same,
• try where possible to keep to routines at home doing the things you normally do but only if you want to. Again mom will enjoy hearing about it and it will help you to to not think about it all the time. 
• So I think you may be getting the idea that this isn't a quick thing to bounce back from but to reassure you I think my kids would tell you that they have a version of their mom back now and they may even say it's slightly improved. I would tell you that I know your mom is going to be fighting hard to get better and she will just want you to be ok. She's gonna need your help, your encouragement and understanding and to take things one step at a time. 

Sending you and mom positive thoughts. X

Hi there and sorry to hear your mum is so poorly. I am sure you and the family are very worried right now but try and take each day as it comes if you can.

As Jess and Clare have said the recovery in post SAH is unique due to so many factors; the age of the person, their relative health and fitness before hand, the extent and severity of the bleed, what treatment and whether they have had invasive surgery. All these change how a persons brain responds. Well you get the picture.

I had a grade 4 bleed with hydrocephalus and I was in hospital just unde 7 weeks and i was 39 when it happened. It was well ove a year before I could drive or attempt any work.  The first week was in ICU and I have no  recollections at all but after that I knew where I was and what was happening but couldn't hold onto new memories for quite a while and have had to learn new ways to recall and remember,  

Things that help if your mum is conscious in the hospital ; being careful to talk a bit more slowly and  one at a time by her bedside, pinning up photos of loved ones and having little silence breaks for her brain to rest. Cognitive activity , thinking, will wear her out fast. 

Take care and ask if if you have questions, someone will have an experience that may help you.  

Sophie, do you have someone with you today? , someone who can help advocate for you that this is not usual state of affairs for you , that for you to be falling asleep, still in pain, have no energy is not normal for you.  be firm, be clear but get that point across. Don't panic, don't get cross get determined...channel your inner strong woman ...they need to understand that you need help to understand what that previous discharge meant ,  what they think may have happened and if it was a bleed then what happens now and to get the help and support for what's next 

good luck. 

Hi Sophie

Welcome to BTg even though I'm sure it's the last place you wanted to be visiting. You are going to be feeling a lot of worry and uncertainty at the moment as nothing is going to be clear until you see a neurologist I expect but in the meantime you can help your body by trying to relax and take frequent breaks from stimulating environments, drink plenty of water and rest plenty. 

If they have scanned you and discharged you it is unlikley you will need to have interventions but they will want to do a more detailed scan to help diagnose you. We can't give you medical advice so the neurologist is the person to advise there but we can help you with questions to ask. But quickly, if later they decide you have had a bleed in the brain then yes you can travel, other members have had babies post bleeds and you like us just learn to adapt to the changes within your brain which may show up post bleed. 

Take baby steps for now , listen to your body and push for that appointment.

Daff 

Hey Robyn, sorry to hear of what you've been through. The after care you managed to get sounds a good basis to help you start to rebuild a new life framework but I think you're being very sensible about how you go back to work and indeed what that might be. There's a huge long thread in here about that which you might want to read in chunks.

Ask anything you want, someone will always have a view and an experience to share.

Daff x 

Jennifer, glad you found us and welcome to the site.

When our brains bled there was no warning and then later the conciousness of the ccognitive changes that have been wrought plus the submission we gave to all the hard medical procedures together with the cocktail of drugs and often prolonged medical stayovers, well I guess what I'm trying to say is that this all leaves an indelible footprint . Its an experience that changed us.

it doesn't define us though but the memory of things and experiences can be triggered in different ways and in turn that has a very physical effect. I was diagnosed with PTSD after about a year and a half and that was following my second lots of counselling. First was through work and was just dealing with the day to day trauma I was experiencing but later it was clear that my triggers were all out of kilter and I had CBT through my GP. 

 If you haven't asked for counselling before now then I really suggest you see if that's a possibility and in the meantime find and explore ways to slow yourself down when the racing feeling is upon you. I use a combination of mindfulness, mints ( win's top tip ) and self massage( spelt it right today!) . I also ground myself with what I can see, hear, smell in that moment. It works honestly. 

Things are going to I mprove. You will have less fear in time. Time really does put distance , the scars will always remain, yes they will fade but you know they are there and so always be considerate to yourself and make some allowance especially on the days you are more tired.

It was an ordeal but one we got to live through but you are different as a result and we have to be gentle with our weak spots. 

Robert. So glad today and your replies have maybe helped it be a bit of a better day.

Baby steps now, there is no quick fix for any of us but as Macca says, time is on your side. 

I hope the book is useful, some of what you said resonated with how he described life and had the wife's view which I thought may help you both.

Approaching life after brain events is Dim Sum living I think. it Can be delicious but it's tiny little bites one at a time. Slowly does it. 

Oh oh and this thread will already be helping someone...see what you have started ! 

Hi Robert, welcome to BTG and sorry to hear you are having a tough time of it.

Brain damage is a peculiar injury in that we don't recover necessarily we just adapt and learn to adjust styles and thinking that works around the damaged or affected area. So over time we may see improvements but it is a different state of brain to one before the bleed and injury. 

James Cracknell and his wife wrote a book about his adapting to life after brain injury and how pushing too hard caused him some temper issues , it's worth a read, and I  think you should reach out to Headway if you are in the U.K  just to see if they can help you practically with some coping strategies. 

Robert the hardest person putting the most pressure on us is us. The ego of wanting to get back to everything as it was before and trying to show that nothing has changed , well it's our only measure. WE all  have to accept that in that moment we had our bleeds things changed and now it's maybe time for you to take a moment to adjust and adapt and be a little less fixed in how you approach things. Pride has its place but it can leave you very lonely so please just tell people you are struggling and see the healing that can come from that and possibly some release from struggling.

One of our members, Kris, wrote something on a thread the other day which I saved as it really resonated with me , maybe it will with you. 

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I actually started living my life again instead of trying to either bend my new brain to my old life, or bending the present to my brain injury.  I was beginning to recognize that things were going to be different and starting the thought process of being really good with that.

I'm going through some re evaluation at the moment as it's  four plus years on from mine in that I am still trying to bend too much to the old instead of living the new. Why not join me with my resolution for 2017 Robert and try and live the new a bit more, maybe we can both make some changes  ?

Cassandra

I'm so sorry to hear you have been through the mill again and completely knocked off kilter. I'm glad however that for your sake they caught it in good time and have now been able to make the correction, maybe after some good healing you will find this will help with the other symptoms you were having. I hope so. 

I can only share a second hand account of a friend who had a craniotomy and who helped me a lot post shunt surgery with calming my anxieties.. Basically make slow movements , slow to rise, slow to lower, and it may occasionally give tickly odd sensations all around the incision area.

She advised me that she didn't wash her hair fully for quite after surgery, for a while longer than me I believe , so nor did I post shunt surgery certainly not until all stitches were out or dissolved but then it's  less of a incision than a craniotomy. Even then I had to ask my MIL do it for me. I sat in the shower so I didn't have to put my head forward ... it certainly strengthened my relationship with her ?

My best advice is be kind to self, slow everything right down and just ease back in very gently, it's another brain surgery. Use what helped you before and If in doubt phone and ask and maybe an email to the consultant or surgeons PA to ask if there is any specific advice or follow up..? 

Take care now