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Daniel... struggling with not being invincible


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On 09/05/2021 at 14:41, Skippy said:

0.186% of those that have a brain bleed survive - how's that for perspective hahaha.

 

Also very interested in the source of this statistic.

 

Daniel when Mrs Subs was transferred to Western General in Edinburgh for her coiling procedure this was the first helpful site I was directed to. 

https://patient.info/brain-nerves/subarachnoid-haemorrhage-leaflet

 

Many helpful comments.

 

Subs 

 

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Hi Daniel ... you may find this link of interest too in as far as it relates the feelings of a spouse on the 'other side of the fence' when her 110 mile an hour neurosurgeon husband couldn't 'prescribe his own medicine' following his own bleed.... and incredibly the comments from his neuro colleagues who should have known better. 

 

Subs

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On 11/05/2021 at 21:32, Skippy said:

There was a scottish team football manager who had an aneurysm and wrote a book and I think this was the title as it was the statistic he was given.  Can't for the life of me remember who it was though - not Ferguson, way before he had his and I had mine; which is 15 years ago this year. 

 

Hi All, I hope everyone has had a good day and are feeling well.... thank you for the replies and comments I am truly enjoying the feedback and interaction...

 

Skippy was this by Ian Wilson or Keith Anderson they are the only Scottish football managers that are not Alex Ferguson I can find linked with brain aneurisms... its not vital I am just hunting down stats as I am really struggling to make sense of the numbers...

 

Subs. Thank you for the links I will have a look and a read, though I have noticed I start to read about these things at night and then wind myself up so I will probably do my research proving statistically I am Batman in the morning...

 

I am sure i have broken the rules today but bar aching a bit I feel good to have achieved something for a change.... managed to motivate ourselves and get into the garden, it was actually quite warm and nice and I do love to be outside...so we had a go at the greenhouse... levelled and put down a base and managed to build the potting shed end up, so we have a rigid structure to build the rest onto... 

 

Probably i have not drank enough juice and feeling the additional timber (kg) i have put on since "Nicola" came into my life but also have a feeling of a useful day and earned tiredness which is a real positive for me at the moment...

 

I will look though the posts and links and reply in more detail tomorrow... zopiclone kicking in, Alex adventure in numberland calling and my Puss in need of some cuddles before I sleep...

 

Take care All and I will write soon D x 

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Hi there

 

Those names don't ring a bell - but it was 15 years ago that my hubby got me the book.  I've scoured my bookcases but can't find it anywhere - I have a feeling that I wasn't up to dealing with my own at the time, let alone reading about anyone else's, so it probably went to a charity shop.

 

Lots of info from the fantastic Subs on the other thread though.

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  • 1 month later...

Hi Batman Dan :) 

 

Just wanted to welcome you to BTG. Sorry for late response.

Absolutely loved reading your thread. 

 

Wishing you well with your recovery. You have a great attitude to life. When you are a go getting doing person it is very hard to take things slowly. I pushed too hard and went backwards. Learnt my lesson and now pace myself.

 

Things will get better :) 

 

Take care

Tina :) 

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Hi Tina thank you for your kind message.. BTG has been a wonderful to me in these past couple of months, its so important to be able to communicate with people who really understand what's its like rather than a "medical opinion".... I hope some of my posts or threads have raised interesting or important points and that I can be a valuable member of this community..

 

7 hours ago, Tina said:

When you are a go getting doing person it is very hard to take things slowly. I pushed too hard and went backwards. Learnt my lesson and now pace myself.

 

Things will get better :) 

 

I am sorry to have been so quiet in the last week or two, life sometimes takes over and trying to adjust to a new pace of life and my capabilities is a struggle... 

 

I am finding the "recovery" quite difficult to be honest it comes in waves and I feel like I am still at the beginning of this journey... 

 

I do not know whether what happened has really sunk in yet, there are times I feel very normal and others where its like walking through treacle...  I do know this slow pace of life is really stressful for me which has been temporarily releived by good weather and the gardening we have been doing, without that I would be driving my fiancé and cat loopy as well as myself...

 

After 5 months if I had taken the recovery timeline from my Medical team I would be back to normal, working, trading, playing tennis and getting ready to restart contact sports like boxing.. 

 

Reality is I am no where near that and am feeling very frustrated..... 

 

As a question to all.... when / after how long, did you accept your new life? Did people get depressed when the realisation of what happened sinks in, or euphoric at just being alive?

 

I am nearing the point where I am going to need to find a purpose after always being driven taking it easy does not sit well and I find days I am not busy with the garden quite slow and painful... 

 

There are no local help groups for SAH sufferers here in Staffordshire that I have found and not being the world's most PC individual I have shunned the worlds of therapy and counselling throughout my life... 

 

I am now hoping that I can find a way to accept what happened and makesense of it,  make changes to accommodate some of my new weaknesses instead of feeling as lost as I do a lot of the time at the moment..

 

Anyway I will keep checking in, hope everyone is well and you all have a great weekend.. D x 

 

 

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Hi Dan

 

To be honest I was like you - impatient, frustrated, scared, angry etc and it probably took me until my first anni-versary to accept the new me.  I still can't exercise the way I used to as I can't bear the vibrations I feel in my head from high intensity exercise.  I still hate this part of the new me.

 

Acceptance to the new us is a very individual process and we all accept in different ways at different times - be patient with yourself and don't beat yourself up about this.  

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Good morning Skippy and all BTG peeps...

 

Thank you for your message and wise words, as you must know it is all much easier said than done....

 

I feel more in a fog than anything at the moment I dont understand why it happened with no warning that has been identified and that scares me.... a lot..

 

I feel like i have done everything in my power to help, stopped everything, smoking/ drinking and all my other chosen narcotic recreational activities cold turkey ..... I am disgustingly clean living now...

 

I sleep 8 hours plus a night/day, yes assisted by prescribed meds which is more than double the sleep I had for the 30 years before...

 

I eat very well and healthily because of my partner, and because of the prompting of BTG members have really concentrated on drinking fluids ...

 

I can't work and have not really tried to push myself as I did in the past.., that is causing me stress about the future and other aspirations and with the total lack of support from the state I do worry a fair bit..

 

I feel exposed, at risk, anxious, frightened and almost expectant that it will happen again but next time with a worse outcome.... not something I can discuss with my family as I don't want to cause them more worry than I know I already have...

 

So what comes next...??.. will the worries just fade, will trust in my brain not exploding return so I can start to be the old me again or do i have to accept the old Batman Dan has gone and look to see which path my future holds...??

 

I am not a patient person and am already worrying about the autumn and winter months.. our gardening has kept me sane, or at least distracted but my chess playing mind is already several moves ahead and starting to stress about how I am going to cope with long cold dark days....

 

I have a question and apologise to anyone that doesn't like the way I have thought about life and people before... (maybe my SAH is my punnishment)

 

People keep suggesting Headway, meditation and other kinds of therapy and counselling....

 

The Pre Nicola Daniel would have gone into a dark and deep diatribe about people making excuses for their lives and how, why etc its not fair...

 

I  believe we are totally responsible for making our lives as we wish them to be with dedication and determination....

 

I don't believe everyone is equal, some people have gifts of skills and abilities that allows them to succeed at different things.... genius and talent can come in many forms, mental or physical or even attitudinal which enables them to be successful....

 

Others are ants who are happy to just plod along and do the mundane.. for a total world to exist we need all sorts and we individually decide and determine which kind of animal we are... 

 

Did my Nicola turn out the spark that made Batman Dan, Batman???

 

I once to appease an ex went to a meditation class in Notting Hill which came highly recommended.... I nearly lost my £€^& with the people running it ....talking about streams of air coming out of the top of their heads and other utter, utter nonsense ...

 

So how do I now turn to these people, these groups that  I struggle to accept or value with a mindset that they can help...?

 

Any thoughts or views from BTG members would be greatly appreciated, I have probably used this forum to openly vent my angst and raise questions I have... and because you all have real experience I trust and value your responses...

 

My Neurosurgeon and Consultant is I belive a world leader in his field but his team also discharged me with the "you will be back to normal in 6 months story" because they have nothing more than a 3rd party understanding of what we have all been through so how on earth can an "Ologist" of any kind help...

 

I look forward to everyone's thoughts and views and as always thank you all and wish you a wonderful happy weekend...

 

I am off to Manchester Chinatown to buy food and maybe if my fiancé gets her way i might have a haircut. I have been hiding behind COVID and my Nicola for neay 2 years now and grown it for fun and now I look like a sheep 😉

 

Dx

 

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Your in no way alone in thinking how long, why, etc....

also being told 6 months 'you'll be fine' takes longer - sorry.

 

BUT it will happen slowly but inprovements will happen...  enjoy your shopping and haircut Ah! a haircut is like medicine....

 

Keep hydrated....

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Hello Daniel and thankyou for openly sharing your feelings this far, following your 'Nicola.' (NASAH)

 

When you reach your hairdresser's chair soon, and as 'she' attacks your sheepish locks, re-read your post above and deliberate how much has been about ewe! 😊

 

You do sound like a 'caged animal' and all that it implies.

 

As many of our members have often reiterated, in that first year the healing process is very simple. Rest, no stress, plenty hydration and at best a slow phased return to work if that is an option. No fast track route is acceptable to a traumatised brain.

 

You are building up so many worries in your mind about the future months. (and maybe rightly so.), but remember one thing the statistics do show,..... and BTG membership are an extremely good 'random sample' .... is that the recurrence of a bleed is extremely rare. Surely you can take much reassurance from this and worry less.

 

You are right when you muse that everyone chooses their own life map, and yes, it is commendable to strive hard to achieve your goals. However the simple fact is that we often do not realise until it is too late what effect this constant strain has done to our finite bodies  both physically and mentally. 

 

Then an explosion !!! .... brings us, for a time at least, unable to even live up to the lowly ant.

 

Your comments on 'mindfulness' reflect your own opinion, however some form of mindfulness or meditation has been of benefit to a good number of our members, with others finding solace and peace from spirituality in the form of their different religions. 

 

Recovering to some degree following brain trauma takes everyone down their own pathway. 

 

Perhaps I have missed some of your comments on BTG, but how is your partner coping with the changes brought upon both your lives by NASAH? (Pease do not feel you have to answer.)

 

Returning to work is something that most survivors strive to.

In Mrs Sub's case when following a long phased return, she was back at her stressful work, multi-tasking, quick decision making, deadlines every day and endless tough meetings. ... she made it for a year, but at what cost?

 

Shattered each evening and unable to cope with the fatigue...then next day more of the same. 

The crux came when they offered her a promotion to an even more stressful job.... decision was then easy ... retirement and a return to partime work at a lower grade.

 

After 10 years post SAH I am so pleased that we both have our lives back. 

 

We are content with our lot. 😊

 

Take care and trusting you and partner will make the right decisions for your future. 

 

 

Subs

 

 

 

 

 

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Daniel

 

Have to jump in on this one too as impatience, ego, ambition , drive, determination , stubbornness, well all these traits are shall we say something that can make for awkward company in recovery but equally they are blooming good traits to own post a brain bleed as you will explore, question, be curious and fall down and get up . BUT,  and yes it is a Big BUT, they are the same traits that make acceptance and patience post a brain bleed incredibly hard and fleeting .

 

My opinion to you regarding mindfulness , meditation , stillness is think about the effect the gardening has on you, if you can open your view that practicing gardening is mindfulness in action , it is the paying of attention to one moment, one act, something that can’t be rushed then maybe you may be open to trying some practice yourself. If you don’t want to go to a group buy the book Finding peace in a frantic world and do the short course in that. If you hate it then burn the book! 

 

Regarding counselling , it’s fine to have a view that you should be able to cope, to weather, to soldier on, lots share that, but also it’s ok to acknowledge that some things when broken need more attention to fix them then previous breaks. They need extra arsenal , a perspective that talking to someone may help you carry the weight of worry is not a weakness it is a sign of your continued courage and strength to move on with this, to change, to explore what you might not have done before.

 

Headway was a big deal for me. First asking them for help and then Accepting I needed it, they came and assessed me and they helped me put back some of my confidence foundations, one was to take me swimming as up until that point I was scared that my hole in the head or the shunt might let in water!! Yes really. 
 

Getting back to contact sports I would think hard about, and then think about what you might fancy trying instead. Like Sami I can’t do high impact stuff anymore, and yoga was out as can’t do any inverted moves and I’m too competitive not to want to do anything ...so what did I do...three yrs in and I took up paddle boarding.

 

I may have been falling over on dry land at the time but my wise , now departed,  mum said well give it a go as hurts less falling in the water. And she was right. And so I got good coaching and now I paddle weekly and yes it’s slow, but it’s exhilarating, I’m learning all the time but single focussed , it’s everything my brain craves and if I need to I sit down on the board , drink water, eat a snickers and chill. My pace, my terms, my way.

 

So continue with the reinvention. Continue to regain what is within reach and that doesn’t hurt you and if it does, look for something different that gives purpose. 
 

You’re learning a new way to dance and there’s purpose in that
 

Go steady 

daff x
 


 

 

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Hi Dan

Hope you take notice of what Daffodil says.

Especially mindfulness I was of the same opinion as you, and I certainly wouldn’t join a group, I did download the book,

and it works for me.

Keep up the gardening and enjoy the rest of the summer.

Compostc

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