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Daniel... struggling with not being invincible


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Hello BTG forum I have just found this group and am posting for the first time so please forgive any fopars...

 

If this introduction is too long winded I am sorry, I am having a very difficult time coming to terms with what has happened and am struggling to find any useful feedback from my doctor... I don't want to burden my family with my worries and found this group and read some threads and hope maybe I have found somewhere and a group that will understand what I am going through and be able to offer me meaningful guidance for this journey..

 

As an introduction I am a very lucky survivor of a no cause SAH which happened on the 23rd Jan 2021... 4 days before my 49th birthday..

 

My life prior to the SAH had been a wild adventure, numerous businesses and a rewarding career, 19 years overseas in the Gulf and Asia, some extraordinary experiences, several scrapes and situations you could not make up as stories, and I truly felt like I was Batman...invincible...

 

Wow was this SAH a rude awakening and why I am now truly lost..

 

My SAH story.. I was sitting at my desk at around lunchtime trading cryptocurrencies and forex which I used to do daily, very relaxed smoking  "herb" my chosen vice when a sudden onset "thunderclap" headache arrived...

 

Unusually for me I knew something was not right as said having lead varied life and being through many scrapes my "gut" told me this was not something to ignore or self medicate for.. so I took myself to lie down, pain killers didn't work and after a couple of hours I called the NHS line to get advice.. I ended up having to take a taxi mid afternoon, alone to Southport Urgent Care hospital where they conducted CAT scans,  chest XRays, bloods etc. and told me they believed i had had a brain bleed...

 

Luckily for me I was very lucid, I was in fact still trading online on my phone which the doctors thought was unusual but I was really just trying to distract myself and prove to myself my brain was working.. 

 

Due to COVID I went to hospital alone, my fiancé is from overseas and didn't understand what was happening and was alone at our home, my 78 yr old mother was alone in the midlands and my sister alone in London...I had to make them all aware what was going on which was a decision I struggled to make to be honest, not fully understanding what I was going through and not wanting to cause my family stress

 

They decided to send my in an emergency ambulance to The Walton Specialist Neuro Centre in Liverpool.... the nurses in Southport and ambulance staff were incredible and kind and started to try to explain to me the severity of what was happening ...

 

All I can say about the care I received from the NHS is that it was incredible, many of the nurses and doctors are indelibly written into my memory...

 

A 2 week stay at the Walton Centre, CAT scans with dye... 2 DSA procedures, not able to have MRI as apparently I have metal in my eyes and for someone like me, who understands through facts and data, the most frightening and stressful diagnosis...

 

No cause SAH....

 

So, you nearly die, are incredibly lucky you are not physically or mentally impared, after 2 very invasive DSA procedures they have no idea what happened or why... is it just me that finds this more difficult to deal with than something that could be pin pointed as the cause... 

 

A separate "incidental" aneurism in my brain that they at this time do not want to treat.. 

 

So 3 months on having had to find a new house to rent as our landlord had sold where we were, the stress and physical exertion of the move and my own stupidity taking on too much I am now in need of advice and support ...

 

I am willing to share my experiences and happy to be an active member of this group and truly hope as I learn and progress I can pass some insights to others in need..

 

However, at this time it is I who is in need, maybe a delayed reaction or realisation that I am not who I was before it happened I feel quite lost and alone in how to deal with the cards I have been dealt..

 

So I thank anyone who has managed to wade through my introduction and thank in advance anyone who provides advice either directly to myself or to others that I find reading through the forum posts..

 

I am happy to be here, and look forward to learning and participating where I can

 

Thank you all again I am sure I will ask many questions moving forward...

 

Best wishes to all... Daniel..

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Welcome to BTG, so glad you have found us. If you read through the forums you will find other member's experiences very helpful. As we are not medically qualified we obviously can't give medical advice. 

Listen to your body and do not push yourself or you will find that you will go backwards in your recovery. Make sure you keep well hydrated as this will help to alleviate any headaches you may get.

 

As many on here, I suspect you will have had very little information given on discharge, so reading through posts will possibly be very informative for you.

Any questions you may have, please feel free to ask and more than likely there will be someone come along who can help you.

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Hi Daniel,

Welcome to BTG as we call it, so sorry to hear that you suffered SAH with no cause. I can imagine it being very frustrating, not knowing why or what caused your event to happen. I think it will come under the title of NASAH, which means it wasn't due to a ruptured aneurysm, if i am wrong, i am sure someone will correct me.

 

You have come to a great place for advice and support, i had SAH due to ruptured aneurysm in June 2014, this group has been my saviour,  i am sure you will find it will be yours too.

 

It's very early days in your recovery, try not to push yourself to hard, make sure you rest when you need to and drink lots of fluids, staying hydrated really is important, it will help with headaches.

 

You brain and your body have suffered trauma, try to listen to them both, they will both let you know if you are pushing them to hard, they need time to heal and recover, be kind to them and yourself.

 

I'm sure there will be many questions that you will have, don't be afraid to ask them, we have all been where you are now and we understand the fears and anxiety that go with early recovery.

 

I would just like to wish you well as you set out on your recovery journey, the recovery road can be a bit bumpy at times, we are here for you, please don't ever feel like you are alone.

 

Best wishes

Michelle xx 

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Hi thank you for your replies and kind words

 

it's more stressful for someone who thinks like I do to have a No cause SAH as I need answers to process things.... I am also finding the after care support less than required, though as i have said the urgent care treatment was out of this world... 

 

I will keep reading the forums and hope my mood stops being as changeable as the UK weather.. 

 

Have a lovely weekend Daniel x 

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Daniel

 

Hello Daniel and also a very warm welcome to BTG.

 

Also so glad you have found BTG as you will definitely get help in understanding the challenges of SAH/ NASAH from the first hand comments of our survivor members. As others have said, this is not medical advice but solely based on how each have faced their own set of issues post SAH. There is no single `route` to follow as each bleed and individual has their own unique journey.

 

When you are discharged by the specialist neuros who have helped you survive, they are unable to tell you what you will face. At that stage they do not know:-

The full extent of brain damage caused by the bleed. (resulting in fatigue, personality and behavioural change, headaches, memory loss and dexterity issues and others) 

Your personal circumstances such as family support, financial commitments, employment circumstances and how that can be adapted to your recovery.

 

Taking your points as they arise.

` I don't want to burden my family`  Unfortunately your family are already involved. At this early juncture you have no idea how heavily they are involved. You are fully concentrated on `you`, and trying as you have said… to get back to where you were. Please be very aware that they are in turmoil with the same desire to know when you are going to get better …. And they are already trying to deal with all the changes that you have referred to in your posts on BTG so far. I can assure you they are very confused and looking for information too. (please try and refer them to the Carers Forum` on this site. They need BTG too as much as you.

 

`My life prior to the SAH had been a wild adventure`   please heed the advice our members have already offered. You cannot outwit SAH with your previous abilities. This is now a partnership ! You need to accept that your brain and functioning have been seriously damaged by the bleed and accept this and move forward slowly…. you are now running a marathon, not a sprint… and taking a long term approach (many months and years) rather than weeks as in a normal hospitalisation …. you will as already commented on at times, take one step forward and two back.

 

`Wow was this SAH a rude awakening`. …….  Welcome to the BTG membership.

 

"relaxing smoking herb"  Important to ask your GP the effects of completely stopping this habit.  Also on you next contact with your neurosurgeon, please ask what the effect of long term `weed` use could have on the brain.

 

`All I can say about the care I received from the NHS is that it was incredible, many of the nurses and doctors are indelibly written into my memory...` You have got this right 100%


`However, at this time it is I who is in need, maybe a delayed reaction or realisation that I am not who I was before it happened I feel quite lost and alone in how to deal with the cards I have been dealt..`  BTG and it`s members can help. There are so many accounts in the Forums about coming to accept the reality of this statement. But please also keep in view that improvements can be made with your understanding and the cooperation of your family, friends and employer.

 

`I am vastly weaker physically than I was for sure and have the energy levels of a 300 year old which has presented in my evenings being uncomfortable rather than painful after a day of doing very little..`   You have already received the best advice from our members.   `slow, slow, slow`. !

 

`Did I just break all the rules and advice I am reading on this forum of being good to myself..`  We cannot say for sure in your case… but you can read the many `fatigue` instances relayed by our members. SAH/ NASAH does result in various levels of fatigue but can be managed by recognising your damaged brain and body can only take so much.

 

So Daniel, we welcome your future posts about your coping strategies. Our members can assure you that you can have a life post bleed. That life relies on an acceptance that change to some degree is inevitable. I do hope that you and your family and your employer give SAH/ NASAH the respect it deserves and together give you the best chance to move forward.

 

Subs

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Good morning All and thank you for the replies and advice...

 

Subs, thank you for such a  thoughtful response to my post and the detail therein I had thought as I initially read posts in this forum that I had found a golden source of people and experience to help me through this next phase of my life.. 

 

My experience so far is that apart from my fiancé, mother and sister who were there from the day it happened, or at least due to covid were together in my home supporting each other, and on the phone with me no one understands the serious nature of what I have been and am going through...

 

They had purchased the book 'A dented image' while I was in the Walton Neuro Centre which in my opinion is an awful read for someone who has had a No Cause SAH and is relatively unscathed....

 

I found it both upsetting and non relevant I don't need to keep being told I should have died or be severely physically and mentally disabled ...

 

As a question are there any books written by those who have been 'very lucky' and are showing minimal signs of what happened on the outside and are positive and informative..??

 

My friends, work acquaintances, even the GP and people within the Benefits sectors (a frustration and other questions I have on help and assistance and financial support) seem to have no understanding of what a SAH is (why would they I suppose) and because I sound and look OK give me the impression that as far as they are concerned I am fine and need to just get back to normal...

 

It is why I asked the question what is the 'New Normal' how apt for these days we now live in.....

 

I feel like I am being lazy and when I am not very active time seems to be on a go slow and days dddrrrrraaaagggggg by in a painful way...

 

I have upped my liquid in-take, can recommend tesco Apple and Mango cordial if like me you don't like just water but with drinking all the time comes hamster bladder..

 

There are so many things I want to do, my un-built greenhouse is still mocking me from the garden, thank god it keeps raining and I can pretend that's why I am not sorting it out... I have some car repairs and a myriad of other projects or jobs but have got into a poor state of mind and lost a lot of my self drive and motivation 

 

Subs, I will ask the neurologist about the long term affects of my 'weed' infatuation

.... all they would say in hospital and i have stuck too thus far is dont do anything that could affect your blood pressure while they are trying to get it under control .... Oh and as medical professionals they were unable to comment about it...

 

So i have been good and stuck to what i have been told and not partaken but it was a great friend that had normalised me and my overactive, hyperactive self for 30 years.... I do miss the ability to just switch off and personally think my now need for sleeping pills is worse than the natural remedy I had chosen,.smoking aspect accepted as being BAD.. 

 

So that's an update on where I am as of today, feeling misunderstood, frustrated and quite bored... I have blood tests tomorrow so let's see if this is Post Stroke Fatigue or something else...

 

As an aside as i have seen in a few posts people mention their pets... I am a huge animal lover and my plan pre SAH was to have a small farm... now I just have 1 gorgeous black and white domestic cat who decided to cut herself quite badly 10 days ago (think there was something in a hedge she ran through) and ended up at the vets having 10+ stitches... and emptying my wallet... please all get Pet insurance, I didn't have it but sure do now!!!......the stitches come out tomorrow and we can take her lampshade hat off so at least one of us will be happy and back to normal... 

 

Thanking all of you on this site and wishing everyone a happy Sunday..

 

D x 

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19 minutes ago, Eruditedk said:

They had purchased the book 'A dented image' while I was in the Walton Neuro Centre which in my opinion is an awful read for someone who has had a No Cause SAH and is relatively unscathed....

 

Some of the "older" members on here when the site first started 15 years ago or so contributed to the book and I know what you mean by your comment, but believe me, in a years time re-read it and you'll appreciate it a lot more.  When I first joined this site, I couldn't read about others' experiences and, basically, the hell that some people were going through.  It depressed and scared me, but I continued reading and, if anything, it made me more determined that I wasn't going to let this dominate my life.  It made me more intent on beating it and getting back to the best version of the "old me" that I could.

23 minutes ago, Eruditedk said:

I found it both upsetting and non relevant I don't need to keep being told I should have died or be severely physically and mentally disabled ...

Again, in time, you will appreciate these comments.  You will come to realise that you have been lucky with hand that you have been dealt. When I first had my SAH, I got angry when people said I was lucky.  I'd raise my arms, gesticulate to my body, point to my head and say "Tell me, how is this 'lucky'??"  But you know what, as time went by and I gradually got better, I realised they were right - I was lucky; lucky to come out of this with little or no aftermath other than fatigue and to basically be alive.  At this moment in time, your interpretation of luck will be a lot different.

 

Don't beat yourself up about what you can and cannot do right now.  It will get better, you will get stronger.  There is no certainty that you will be back to full strength and be able to do all the things that you could do before.  Baby steps are the key.  You wouldn't walk into a gym and choose the heaviest weight to lift - you'd build up your strength and the heavy weight would be your goal.  Adapt that approach to your recovery, keep a diary to look back on and monitor your own progress - it really does help you to see how far you've actually come when you feel you've not come far at all.

 

It's a long road to recovery, but you can make as many pit stops as you like - and we'll all be here to change your tyres and help you refuel :-) 

 

Take care xxx

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Hi Skippy thank you for your reply and I am sorry if I offended you or anyone in regard to my comments about the book A Dented Image...

 

One thing you will get to know is that I suffer from a massive case of foot in mouth and am quite skilled in offending people without meaning too, I am blunt and direct but never malicious and people who know me well would suggest I am intolerant and contrarian as I seek the boundaries life and the world has to offer...

 

I also noted from your bio that you like me obviously enjoy stress and frustration being a fellow Liverpool FC supporter, (last 45 yrs) even last night had my BP up and my brain tingling...my family are trying to stop me watching them play....

 

My comment in  regard to the book was more asking if there are any books or accounts , bar this wonderful forum,  that cater for those "Lucky" ones of us who are not carrying externally obvious disabilities from our encounters with a SAH?.

 

You may be right that the book I refereed too will make more sense to me in a year or mores time....

 

However, what my family and I were looking for was not something stating that 30% would be dead, 40% would be vastly physically impared, you are in a small percentage of people who don't have obvious signs of damage from your SAH... 

 

For a book or texts that said what you all have, which is dont worry so much, listen to your body and it will take time and that could be a long time, but you can recover and find the old you again and have a life and the life you wanted before doesn't have to be over.. 

 

I  feel like the boy who cried wolf as externally I am still my gorgeous 18yr old self, fit, healthy, strong and articulate ... it is just inside I feel like i have been beaten up, run over by a truck and ingested 4 bottles of whisky that's affecting my focus and memory... ... (I hope I do still have a bit of my sense of humour left though)

 

I want to be back to my old self and have taken from the forum that is possible but it will take time, I was told when I left hospital 3 months to feel OK 6 months to be back playing tennis and Boxing again, this was or seems 3 months in,  massively unrealistic...

 

I am enjoying reading all of your posts and learning and will look in later on, now as the rain has stopped my fight with the greenhouse must continue...the problem with time is it waits for no one, SAH or not  and we need to plant seeds before the farce we in the UK call summer has gone which probably means I will be a wreck again in a few hours time... 

 

Take care all Dx 

 

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Don't worry - you haven't offended - I couldn't read the book for months and then still struggled.

 

0.186% of those that have a brain bleed survive - how's that for perspective hahaha.  Apparently you then fall into the other three categories - believe me, when I first read that I was terrified.  You can determine those statistics, you can change them, but yes, it will take time and you do have to be patient.  So unfortunately, you're going to have to have a word with that gorgeous 18 year old and tell him he has to slow down for the time being; just until you get over the whiskey induced hangover!!  Easier said than done, but it really is the best route.

 

Yes, Liverpool are definitely a test on the old blood pressure.  I turned 50 last month and I have supported them since I first heard the Beatles played on vinyl by my parents, heard the accent and watch Yellow Submarine :-) I'm pretty much the same when watching my beloved boys play - on the sofa, off the sofa, shouting, jumping etc - beats the gym :-) 

 

Hold on to that sense of humour - team it with a good dollop of stubbornness and you'll get there - but you have to mix in patience!!

 

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Hi All, I hope your weekend was good and went to plan...

 

I lost my battle with the 

greenhouse I am blaming the weather as I don't want to admit it was a lack of energy, though it was cold and i have become a complete wuss...

 

After reading some posts and replies to my messages I do have a couple of questions....now these are to help me with the way I think and may not be helpful to others, I am data driven in how I understand  and it it something that has been bothering me since my SAH happened.. 

 

8 hours ago, Skippy said:

 

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

 

So that equates to 1 in 540 people who suffer a brain bleed, but over what time frame is that statistic...?

 

I was told when it happened the first 48 hrs then next 21 days were the most dangerous period, I am struggling to find any more information to understand the timelines of recovery and risks

 

I asked my Nuro nurse what the stats were for my SAH to happen, and happen again and was told that statistically general population have a 0.4% chance of having a brain haemorrhage and as I have high blood pressure my chance was elevated to 0.7% 

 

I have also been advised that there is no more chance of me having a second bleed than anyone else as they found no cause bar my elevated blood pressure..

 

Then separately as they consider them separate issues I have to take into account they have found another "incidental aneurism" in my brain which they want to monitor but not treat at this time, but have not given me any data to calculate what the probability is of that bursting .

 

I am not trying to be morbid I just want to work out or try to understand what the statistics suggest will be for my long term survival (based on being a pretty healthy 49yr old)

 

I was hoping prior to the SAH to live until mid 70's or beyond ...really being batman I wanted to be immortal as life is so much fun and a great adventure which I have never wanted to end or be compromised by illness or older age, I do truly believe each day is a gift and precious and the opportunities we have are endless......because of this I was hoping to start a family in the next year and expected a long and fulfilling life...

 

Now I have stopped smoking my herb, stopped alcohol, stopped caffeine and am managing my BP so trying to combat the damage done by the SAH ...surely I can live forever being this clean and boring ;)

 

However, statistically if I now have a short or shorter lifespan then I have to be sensible and thoughtful about family plans and open and honest with those around me..

 

It is as you all probably know very difficult to get your doctors to give direct answers to these questions and I wanted to know if anyone has done any research or can point me in the right direction of where to look...

 

Maybe sounds like I am gloomy but I promise this is not, it is just how I process things and make sense of my decisions and choices ahead so any ideas or information would be welcomed...

 

Anyway thank you all again for helping me in my quest for understanding what happened and I do hope the discussions and posts also provide useful information to others... 

 

Back to my audible book... Alex's adventures in numberland... its so interesting or maybe I am just really odd.... goodnight all Dx 

 

 

 

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Hey you

 

The survival % I gave was immediately after a bleed.  I was given the same statistics of it happening again as you were and mine was aneurysmal - I have two and both were coiled at the same time.  I still smoke as the statistic I was given to carry on smoking was minimally higher - more chance of getting hit by a bus apparently, so I took the personal choice not to give up.  I still drink, though only occasionally.

 

You are at the stage where you will question everything, and rightly so, so don't be afraid to ask but you'd be better placed asking the specialists for medical advice. You don't sound gloomy at all - you want and need to know so that you can process and that's brilliant.

 

Hope your audible book was adventurous - maybe find one with a Batman adventure :-) 

 

Take care xx

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Is it wrong that I am loving this thread? You probably sum up what a huge amount of us feel at the outset....annoyance, sadness, frustration , loss.....

 

Daniel, welcome and you know what?  it’s absolutely ok to be questioning absolutely everything right now and also to feel downright p’d off that life pulled a rug from under you and all those things that you knew about yourself, the trust you had in yourself and your capability to approach a situation has changed overnight...and the reason why...well a bleed on the control centre which no one knows how it happened given as the cause.

 

no it’s not helpful to be told you are lucky to be here. I mean yes you are but no not helpful and tbh I couldn’t read the dented image book , I personally preferred ‘rebooting my brain’ by Maria Ross. Her tale is extreme but her attitude is what sold it to me. Try a sample on Amazon maybe? 
 

so it’s time to try an adjusted dim sung approach to post SAH living. You strike me as someone who went full at everything, and I admire that, but now it’s time to approach in the small bite size amounts that work for you today. And celebrate each achievement in that. So gardening, great, but you have to build stamina up slowly and I don’t  just mean physically wise but cognitively. Everything you do right now is taking and consuming energy  that your brain doesn’t have to offer up , so it steals from other areas and then you feel crud, and then that feels worse and you can spiral. 
 

look at the possible in today. That’s it. If you want to trade and you previously would have done that for three hours maybe then just do half and hour and see how that feels. Track yourself, become a master or working out your energy spend and balance that. Eat well, replenish the lost nutrients.

 

but most of all, give yourself a break, spend time with the cat, watch how she deals with her visible injury, how she nurses it. You need to do the same. 
you will go forward from this, just not possibly at the pace you’d like or have been used to,

daff x 
 

 

 

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Evening All... thank you Skippy and Daff for your brilliant replies I am truly enjoying learning and interacting with fellow winners against the SAH war....

 

Forget May the 17th I would be giving those of you that have been brilliant with your words of advice and support massive hugs if that ****** covid would go away... 

 

Skippy I am really interested in your smoking data, not that I am going to start rolling a big fat stress relief joint right now (wow I miss the feeling of calm it gave me, being hyperactive, hypersensitive and basically a lunatic, it kept me earthbound for 30 years ) I have promised my family that vice has stopped and while fear still rules my mentality I will have to stick to Zopiclone a big handful of BP meds and painkillers.....

 

I do wish someone could truly prove to me how that concoction of chemicals is better than a bit, OK a lot of herb but ho hum... 

 

In answer to your comment, as strange as my audio book may sound its super interesting and weirdly for me theraputic....

 

I love numbers as they are absolute and reliable ...this guy then delves into the history of numbers and how we have been taught they work and its quite an eye-opener... I am pretty sure the other Batman relies a lot on numbers in his quest to save the world and be generally very cool as I have for the last few decades, its why he needed a sidekick because 1 of anything is not as good as 2 or more... 

 

Was Blood pressure and issue for you also? What approach or view do others have on the wonderful vices of smoking both legal and all other substances..

 

Did everyone stop caffeine, alcohol and all the other good things in life...??

 

Bar my love and grotesque intake of chocolate I am being incredibly healthy since my SAH which is probably a knee jerk reaction, but I suppose not the worst idea while things settle ... I would like to know the approach to enjoying each day, being sensible for the future or just taking a ****** minded approach others have chosen and what took them down that path 

 

Daff thank you for your recommendation for a book I will hunt it out, I have far too much time on my hands which is not a good thing for people like me so reading anything that may contain useful or interesting data on my new life buddy the SAH is great... as you can tell I am slurping up everything I can to try and understand what happened and why....

 

You read me correctly....extreme or preferably extraordinary but for most people too much and that is why this new phase post SAH is so frustrating 

 

Quick question ...how do you all refer to your SAH as I am finding calling it a SAH quite annoying...cant we call it a "Nicola Sturgeon" or something that other people identify as painful and annoying also?

 

I do understand all the advice and the bite sized chunks you recommend I just do not really know how to do it which becomes a vicious circle...

 

If I suppress my activity I feel depressed... if I follow my instincts I am wrecked and in pain... at the moment it seems like a no win sum whichever way I try to be...

 

As an example and I have no idea why,I decided to buy a stone fireplace today because it looked really nice and no, before you ask I have absolutely no use for it at this time in my life at all, and like I needed to hump 300kg of granite in and out of my car... my fiancé was not impressed...

 

So I must go and have my dinner and then I will go and play with Puss Puss, and yes that really is her name I just tell people she was named by my toddler child that I don't actually have...

 

Thank you all again I will look in on the forums later

 

D x 

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Hello Daniel

 

Many thanks for your frank comments as you try and get to grips with the hand NASAH has dealt you. 🙂

 

You made me smile .... after all the `gentle` advice we have given you .... you do this....:yikes:  :mad2:

Quote

As an example and I have no idea why,I decided to buy a stone fireplace today because it looked really nice and no, before you ask I have absolutely no use for it at this time in my life at all, and like I needed to hump 300kg of granite in and out of my car... my fiancé was not impressed...  ( neither were we !! :shock: )

 

You said you were used to living in the fast lane... 

Quote: .very high functioning both mentally and physically...I thought I was Peter Pan who never aged past 15.. played tennis at a high level could do 16 + hour days of hard physical work long after my younger staff had fallen away... survived on 3-4 hours sleep and for fun trade cryptocurrencies and forex balancing exchange rates in my head as I enjoyed mental gymnastics..

So you were used to making quick decisions where the consequences of getting it wrong could be cataclysmic !

 

We at BTG are trying to tell you that at this moment 3 months post your bleed, it is not too late to make the biggest decision you will ever make. You say that there are still so many unfinished plans for your life. These are now at risk .... do you think giving yourself and your brain the next 6 months to a year to attempt to heal ....... is a price worth paying?   One crucial decision for you .... dare to weigh it up !!

Remember ... slow,  slow, slow `.

 

A dear friend of all BTG members, Winnie,  sadly passed away a year ago and she offered simple advice to all who ventured to introduce themselves to the site. She said repeatedly ...` No stress, sing happy songs, and stay away from everyone who has negative thoughts`

Many fail to head her wise words in these early recovery months.

 

I genuinely hope you make the right decision for you and your fiancee.

 

 

Subs

 

 

 

 

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Good morning All, I hope everyone is well and full of beans this lovely Tuesday morning...

 

Morning is now by far my best time of day which is the polar opposite to how I was pre Nicola Sturgeon (SAH for thos who have not caught up with the new lingo)

 

I used to be a night owl awake until 2 or 3 in the morning busy trading online or researching something weird and wonderful... then up and about by 7am but grouchy because of the plethora of things I had or wanted to do...

 

Now I am tired by 6pm and starting to fade, I become quite impatient and uncomfortable rather than in pain and now sleep because of zopiclone which does help me get 6 + hours but I am still not convinced long term its healthier than my old friend "herb"

 

I want to thank Subs for his honest and direct response to my post and activities yesterday... I take your comments on board and know what you said is right... I am sure I am not the only patient who wants to run... and the advice you all give I know comes from real life experience and is priceless....thank you all ...

 

I sometimes need the riot act reading to me,  as previously mentioned I thrive on pushing boundaries, my own in particularly and don't really know how to back off and take it easy...

 

Honestly the fire place was not a big deal it was 15 mins of exertion within a relatively lazy rest of the day... more is the question now of what the hell I am going to do with a stone fireplace I don't actually need or have any place for.... all not physically impossible or painful suggestions greatly appreciated 😀 

 

I do however take Subs point that not allowing myself time to recover will in the end bite me back, and that is something I do not want .....

 

I have started to see this BTG forum as the only place frank and open discussion with true veterans ( in experience not age ;) ) and people with experience are available and I do hope others that have suffered have been lucky enough to find BTG and can post and read and feel as supported as you have all made me

 

Another slow day ahead with nothing much to try to achieve today (a bit wet and cold to tackle the greenhouse at the moment) I will hang out with my fiancé and play with Puss.... I find days like this quite slow and difficult I now find watching TV quite annoying, a change from before, maybe an aftereffect...

 

I would like to hear others accounts of why and how they made decions about smoking, drinking, caffeine, physical exercise, pushing the boundaries, buying stone fireplaces and moving forward so please throw your hats into the ring and join the discussion if you can...

 

As a purely administrative question should I just continue to add and develop this thread or should I post different questions in different parts of the site.. I don't want to lose thread of the helpful and informative responses I have received but also hope the information shared by you all is found and of use to others....

 

I will look in later but wishing all an amazing day

 

Bests Batman Dan x 

 

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Hi Dan and glad that you're finding the site helpful. :)

 

Thank you for your question and I would probably advise to post separate subject matter on the SAH medical forums as more use to others who are searching for answers to the same. You would probably get a much greater response from other members as well. 

 

Good luck.

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Daniel, suggestion for the stone fireplace. If it was me I would make a feature out of it for the garden when you feel able.

I am one who thinks "out of the box" and have used alternatives to the standard in my garden.

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Hello Daniel and again thanks for your post.

 

2 hours ago, Eruditedk said:

I would like to hear others accounts of why and how they made decions about smoking, drinking, caffeine, physical exercise, pushing the boundaries, ....

You will bring up many posts by entering these topics individually in the BTG internal search option at the top of the home page, but no doubt you will already have tried this.

 

Subs

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20 hours ago, Eruditedk said:

 

Skippy I am really interested in your smoking data, not that I am going to start rolling a big fat stress relief joint right now (wow I miss the feeling of calm it gave me, being hyperactive, hypersensitive and basically a lunatic, it kept me earthbound for 30 years ) I have promised my family that vice has stopped and while fear still rules my mentality I will have to stick to Zopiclone a big handful of BP meds and painkillers..

 

Don't start again if you've stopped - Kudos to you for having stopped.  I never did and found it too hard to try to - it's my only real vice but if I know if I had more will power than I'd kick the habit pronto.  It's not for lack of trying either unfortunately!

 

For me drinking was a definite no no for about 6 months after the SAH - the hangovers were horrendous even after a couple of pints - I can hold more drink than hubby but for 6months after, WOW, the heads were banging.

 

I agree with Karen, to get more specific answers to certain areas, start a new thread in the medical forums and there will definitely be more of a response.

 

Keep that sense of humour though, whatever you do!!

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Daniel, referring to drinking, I couldn't drink at all after my SAH until about 6 months later, like Skippy.

Bizarrely after that length of time I found that I could drink red wine. Prior to my SAH, even a sip of the stuff gave me a blinding headache, not so now. 

Something must have changed.  

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Hi All and thank you for your comments, I will search the topics and questions I have asked about and start new threads as Karen suggested...

 

8 hours ago, Super Mario said:

Daniel, suggestion for the stone fireplace. If it was me I would make a feature out of it for the garden when you feel able.

I am one who thinks "out of the box" and have used alternatives to the standard in my garden.

 

Super Mario good idea on the fireplace, outside would be cool.... when I get some land I am thinking outdoor kitchen / living /dining area and this could be a centrepiece... I have always loved the idea of Follys so am cooking up some plans and ideas for my next project / adventure... 

 

2 hours ago, Skippy said:

 

Don't start again if you've stopped - Kudos to you for having stopped.  I never did and found it too hard to try to - it's my only real vice but if I know if I had more will power than I'd kick the habit pronto.  It's not for lack of trying either unfortunately!

 

Skippy, I am sure, as you have beaten Nicola into submission you can do anything at all you wish, and when you want to stop smoking you will......I smoked for 30 years even though I knew it was awful for me because I enjoyed it more than stopping.... it was only the SAH and truly being scared to very near death that made me decide to stop and did in a split second, I even have a ready rolled cheeky one in my bedside draw that had been made 30 mins before the SAH to show myself if I want too I can.... 

 

You don't have to answer but are we

talking regular or herbal...??

 

I am really interested/ longing to find positive stories about "da herb"  as a way to bringing it back into my life, again a future project when the UK catches up with the rest of the developed world is to research and pioneer the mandatory use of MJ 😉 I have never seen anyone make trouble on it unless you were a pack of crisps or biscuits!!

 

As for drinking I am genuinely not that bothered about abstaining from now on, always been a lover of herb and thought people and the world was more fun on that than booze... it might be good to feel safe to have the odd glass of wine but at the moment I live in fear of any kind of headache so the thought of a hangover makes me want to hide....

 

Fairly slow day I moved the fireplace into the garage out of the way for a while and hunted out an old welding machine,  which sadly looks broken.... I purchased 2 X 205 litre big oil drums last week and intend on making a smoker / BBQ... I just need to learn how to weld but You tube and Google pretty much always have the answers and I did give it a try when we were building houses in Asia a few years ago...

 

Dinner time, then get a fire going, the only positive thing I can say about the UK weather is that there is an excuse to have the log burner going all year round and it's far nicer to watch than the TV.. 

 

Take care all I will try and find answers to my questions or post in another section if I can work out how too

 

Dx 

 

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18 minutes ago, Eruditedk said:

You don't have to answer but are we

talking regular or herbal...??

 

Hahaha I'm talking regular - dabbled with the other in my early 20s but did nothing for me and preferred alcohol on a night out.  Been smoking "regular" for 35 years and Neurosurgeon told me it had nothing to do with smoking and my chances of it happening again would be minimal with or without smoking. 

 

He also stated "off the record" that in my particular case, and because of the size of the aneurysm, that smoking probably saved my life - only because my SAH was aneurysmal and they believe it was there from birth.  They had given me a full body scan with dye initially and found no other aneurysms and that all of my arteries were perfectly healthy, plaque free and blood was flowing freely through them all.  Apparently they were the arteries of a 20 year old non-smoker - genetics I think. 

 

Obviously I am not saying that everyone will be OK to carry on smoking, as we're all as different as our bleeds are, so you should always follow the advise of your GP / Specialist.

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

0.186% of those that have a brain bleed survive

Sami I was really interested in this figure, where did this info come from as I never realised it was such a low rate? Makes me all the more grateful for my life now :) 

 

I stopped smoking 2 years before my bleed so have no idea if it had any part in it. I do know now that it is recommended that you don't smoke post so I am glad I gave up before. It was one of the hardest things I have ever done but so worthwhile. (ps I am talking normal not herb ;) )

I do still drink but have to admit it has a far greater effect on me now - my husband says I am a cheap date!

 

Glad you have found a use for the fireplace Daniel!

 

Clare

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Hello again... fed and watered and the fire has been started so time to sit uncomfortably for a couple of hours before I head to bed....

 

Is it normal for the evenings to be the worst part of the day in the early recovery period and over what time of timeframe does it start to get better... (Accepting lugging fireplaces doesn't help now 😉

 

14 minutes ago, Skippy said:

Hahaha I'm talking regular - dabbled with the other in my early 20s but did nothing for me and preferred alcohol on a night out.  Been smoking "regular" for 35 years and Neurosurgeon told me it had nothing to do with smoking and my chances of it happening again would be minimal with or without smoking. 

 

As I said before I am sure when the time is right for you then you will stop but if your genetics actually make it beneficial for your health why stop... I love it when the medical profession support our bad habits, one in the eye for the woke goody goody police...hurrah for you!!

 

A question which sadly is borne out of ignorance.... I have high blood pressure, I did before the SAH but ignored it and now the doctors are having a problem getting it under control...

 

I assumed that aneurisms and heamorrages were brought on by high blood pressure, i have been told its something I now have to monitor and manage very carefully .... hence the stopping smoking herb immediately 

 

I have also lived the last 20 plus years on a strong coctail of adrenaline and cortisol, being a hyperactive nut bag and being  highly strung obviously has not been the best for my poor old body...

 

40 minutes ago, ClareM said:

0.186% ...I was really interested in this figure, where did this info come from as I never realised it was such a low rate? Makes me all the more grateful for my life now :) 

 

I agree with Claire, we are all very lucky to alive and relatively in tact but I am also having problems with the maths and statistics I have been given and these numbers... thats 1 in 540 people with a brain bleed die doesn't fit with what I was told or the stats quoted in "A Dented Image " 

 

I was originally told when admitted to hospital with my bleed 30% would have been dead at my desk, another 40% would have been very severely broken, the final 30% would have injuries and recovery on a sliding scale and I was in the 1% ish of seemingly very little damage ....

 

I will start another thread on this as I need to delve and understand for the actual mathematical probability of both the initial, short and long term survival of SAH's (sorry Sturgeon's) and cerebral aneurisms....I don't want to be a statistic but what I do need is for the numbers to add up... 

 

Time to put my phone down and stop typing and play with Puss Puss as always I am loving the group and interaction and wish everyone a very happy healthy night D x 

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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. 

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