Skippy

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

God bless our Darling Winnie - still sit and read the Private Messages some days, just to put a smile on face.

Keep singing darling Win xx

Hi there Daniel

We cannot give medical advice or give answers to "What are Post Stroke Fatigue or the actual Post stroke recovery pains and what could be something else that needs investigating" as we are all different and would all go through this in different ways.  The only advice I can give is, speak to your Gp and see if they can refer you to a specialist to discuss - or if you're due a follow up appointment with your Neurologist, ask them

At the moment it certainly does sound like you have far too much, far too quickly and yes, you are now paying the price.  You need to treat this as if you have broken a limb, because you've actually got an injury to something far more powerful and something that does not ever rest and now it's telling you it's not happy.

Read this and it might go a little way to help you, and your family, what you are going through at the moment - its very much an invisible illness but it's very real!

https://web.behindthegray.net/articles.html/inspiration/a-letter-from-your-brain-by-stephanie-st-claire-©1996-r167

Ilse, that's great news on all counts - remember to still take it easy when you can though.  I am so loving your attitude to life and your recovery - well done you!! xx

Hi Adam, and yes, a very warm welcome to the 'family'.

I can't imagine what going through this alone in hospital must have been like for you, or for your family not being able to be there with and for you either.

I agree with Sarah regarding the comment about yours "being a good one" - no-one can define a brain bleed as good in any way, shape or form!  It might not have been "serious" but a bleed is a bleed and it has a massive impact on the patient and those around them.

As for the 6 - 8 week recovery, a slightly unrealistic standard time frame given by medics who have never had the misfortune to suffer one.  It took me a year to stop needing to sleep during the day - like Sarah, mine was a ruptured aneurysm. I now know that I am "lucky" to have come through relatively unscathed, but when anyone told me at the time I was lucky, I wanted to take their heads off!!  

The panic attacks and anxiety can be caused due to PTSD and it's worth getting counselling if you can - I did and it was a tremendous help.  I thought I was losing my mind and that mixed with the overwhelming feelings of guilt for what my family had gone through, didn't help.

Tiredness and fatigue are part and parcel of recovery and you have to listen to your body - it will tell you when to stop.  Plenty of fluids and resting / sleeping when you need to or can are the most important things right now.  Try to avoid stress (not easy during recovery, I know) as this will help with any head pain - along with the all important fluids - the brain needs to stay hydrated.

I say this to almost every "newbie" to BTG - it can be a long road to recovery, but take as many pit stops as you like a long the way - we are your pit crew and are here to help and listen. The only thing we can't do is give medical advice as none of us are qualified to do so.

Look forward to hearing more from you and accompanying you on your journey to recovery.

Take care.

Ilse, all I can say is "Well done girl" - believe me, that attitude and humour will be a great asset to your recovery.  My husband has always said that it was stubbornness and humour that got me through the tough days.  Loving you and your outlook already xx

Hi Ilse and welcome.

So glad that you've found the site helpful and realise that you aren't alone.  

Can you tell us a bit more about yourself - age, job etc.  Don't worry about your English either - it's probably better than a lot of people's that I know whose first language is English!!

You seem to have kept your sense of humour too, believe me this is a huge bonus and get me through a lot of tough days.

All I can advise at the moment is to take your time going back to work full time (not sure what you do, hence the request to tell us a bit more about yourself).  If you can, I'd take a few of those stashed holidays as soon as you can.  You still need to rest and overdoing things too fast may set you back in your recovery.  You need to rest and drink lots of water to make sure your brain is hydrated.  Listen to your body and stop when it tells you to.

Look forward to hearing more from you - you sound like you're going to be fun  

Hi Rory

Welcome to BTG and so glad you found us - this place is truly a life saver.  As for what your Doc told you about 6 weeks - I wish they'd look at forums like this before they give unrealistic expectations.

You'll find a wealth of information and experience here - as well as true understanding of the journey that lays ahead of you.

Definitely join in the banter in the Green Room - one of the biggest saviours for me was keeping a sense of humour alongside the determination, and the Green Room is where we "meet" to have a chat and laughs.

Look forward to going on this journey with you  

A fantastic legacy in honour of a fantastic man who has left a huge hole in so many lives xxx

Hey there

Congratulations on your 1st anni-versary  My first was the hardest to deal with and, like you, I probably felt worse that day than I had in a long time.  Possibly the anxiety and irrational thought that it was going to happen again on that same day didn't help.

I totally get the feeling of wanting the inside of your head massaging and its the perfect way to describe how it feels - I still get that feeling occasionally - especially after a busy day at work.

Thanks for popping in and telling us how you're getting on and I hope your recovery continues well xx

Sarah, absolutely beautiful and spot on with the singing.  Sat here with tears streaming down my face xxx

Hi Sarah

So glad that you liked them - we all thought the brightness reflected your mum's warmth and personality.  

Lots of love and many, many hugs  Sami xxx

Oh My Sarah - so very very sad to hear this - in fact, I'm gutted.  Your mum never failed to put a smile on my face with her posts, her wit, compassion and her positive attitude - and most definitely her singing.

She was a huge part of BTG and she will be greatly missed.  As Karen says, she was one heck of a lady.  Sending you all so much love and many, many hugs.

I'm OK to continue at the moment Karen - will let you know if anything changes x

Hi Charlie,

Yes it may well be because you're on your mobile - its on the top menu bar where  its starts "Welcome, Support Information" and so on.

You're welcome Karen - first thing I do when I get home is log on and have a look xx

HI there and welcome to BTG.

I' not sure that any of our members have given birth after an AVM but there are a couple who have since their SAH.  You say your neurosurgeon is no longer practicing, but surely there will be someone in that department who can look at your records and and your case and advise your Obgyn accordingly.  Ask them to write to them as your surgeon is no longer practicing.

You're more than welcome Karen xx

Congratulations Colleen

So very pleased to hear you're doing so well - it always brings a smile to my face when I read of other's recoveries and their ongoing stories.

And I agree, this is a fantastic family to be part of x

10 hours ago, ToriC said:

She is also transferring to the loo and bed with a spinner thing so she stands 

Hey Tori - if memory serves its called a Torrus or Taurus frame -my hubby had to use one of those to get out of bed in into his wheelchair after his motorbike accident a couple of years ago.  They're brilliant and do make the person using them feel a little more independent.

Fantastic news though about your mum, like Macca said, yours is a beautiful story and you are beautiful people - soooo very  pleased to read mum's progress - in fact it's made my day already xxx

Hi Shobs

So pleased that you're taking him home.  Half term holidays too - lots of rest and relaxation and time to spend together.  It brings tears to my eyes but a smile to my face when I read of survivors going home.

Enjoy your time together and make new memories for the new normal (to be honest, I prefer my new normal a majority of the time x).

It may be a novelty for others hunni, but it's now a way of life for us.  It still infuriates me when people say they have the worst headache ever, or forgetting things is an age thing and especially "well you look OK".  GGGGGRrrrrrrrr - walk a mile in my shoes and then come and talk to me!!!

If you get scared or are worried about anything you must call your GP straight away.  If the symptoms get to a point where its too much to handle then you all the emergency services immediately!!!  Don't feel that you are wasting anyone's time - this is your health  and it comes before anything.

We're all here to support you - the only thing we cannot do is give you medical advice xx

Codeine was the worst for me - slurring could be it getting out of your system but also tiredness.  My hubby had a motorbike accident two years ago and received a head injury - he slurs when he's tired too.

Make sure you rest, especially as your meds have been removed - and no need for thanks for support, its what we're hear for and its a privilege to be able to help xx

Hi Clara

Seeing a Counsellor will be liberating for you - it did me the world of good.  It helped me see past the guilt and taught me stop blaming myself for what I put others through.

I found coming off the strong painkillers actually eased my pain as I was rushed back into hospital 3 weeks after my bleed with a suspected re-bleed - it was actually an analgesic headache caused by the strong pain relief I was taking.  I stopped it there and then (not advisable) and took nothing but paracetamol after.  Remember, lots of rest, water and relaxation will help with the headaches xxx

20 hours ago, Clara mac said:

Skippy you are so right. 

 

I am a medium also and used to meditate all the time and I am trying my hardest to get myself back to that place. 

This may sound a daft question but did you cut a lot of people out of your life who were in it pre op? 

As I feel that's where I am headed now

hey there

Yes I did - one in particular who was supposed to be a  good friend.  When one of my other friends moved to Cornwall I found out this particular friend had done nothing but lie to me and the one who moved.  She'd played us off each other and told the other friend that I would be busy when she wanted to contact me.  The other friend had just lost her sister at the time and wanted to talk to me but was told by the "good" friend that I'd be busy!!!!  We just couldn't be bothered with her in the end and a year later we both cut here completely out of our lives.

I have two very very good friends who were in my life before and are in my life now. One is my best friend of 35 years and we've been each others rocks over the years.

I decided that after my SAH life was too short to have people in it that were shallower than puddle in the sahara!!!  If they're true friends they'll help you through it - otherwise they are mere acquaintances xxx