Hello! Claudette (New Member)

[Claudette]

Hi

I just joined today so I hope I'm putting this post in the right place...

I too am a SAH survivor, having had three aneurysms at the end of August 2015. My SAH journey started at night, with me having the worse headache I've ever had in my life. I couldn't sleep for the rest of the night, and so the following morning, my partner got me some pain relief from the chemist. This didn't work and the headache continued, with the addition of what I can only assume were seizures.

 

On the second day, I went to a drop-in centre and was told that it was nothing to worry about and that I just had a bad headache and very high blood pressure (179). I was given more pain relief and told to get my blood pressure checked at my GP, which I did. My GP advised me to have a blood test and to rest. The following day I collapsed, and was rushed to my local hospital by ambulance.

 

Although I was initially told that it was just a migraine and that I could go home, a consultant had the foresight to suggest that I have a CT scan. This showed that I had had an Subarachnoid Haemorrhage, with bleeding on and within my brain. A subsequent CT scan with dye showed that in fact I had had three aneurysms.

 

The consultant told me I was lucky to be alive, but also pointed out that although he felt that coiling the aneurysms would be the best approach, there was still a possibility that I could die. That said, I survived. Two of the aneurysms were coiled and one small one remains.

I have been home now for about three weeks, and spent two weeks in hospital. I am grateful to be alive - I have two beautiful children and a lot of family and friends, whose support has left me humbled. BUT... although I am improving physically (I feel stronger, I'm now sleeping better, and my headaches are no where near as severe as they used to be), emotionally/psychologically I'm a wreck. I've felt so isolated so it's been fantastic reading the posts from other survivors on this site.

Claudette

[Gemma B-B]

Hi Claudette and welcome to BTG.

 

You have been through a very scary time and that takes it toll - both emotionally and psychologically. It takes a long time to get your head around what has happened and what might have been. It can also be tough dealing with the changes that can come following the SAH.

 

I had my SAH in January (of which I have no memory as I went into a coma and ended up on life support) and also ended up with hydrocephalus and a shunt.  When I first came out of hospital I felt completely shell-shocked and began the process of dealing with what had happened and what changes had taken place. I am now 9 months down the line and over the course of that time I have experienced a whole range of emotions. 

 

I too have felt isolated at points - as much as people are understanding and sympathetic it can be difficult for them to understand how life changing something like this can be. I found that coming on here and reading other people's experiences and advice very useful in helping with that.

 

I was also very fortunate to go to a SAH support group at the hospital where I was treated (The National Hospital for Neurology and Neurosurgery in London) which allowed me to meet others who had had an SAH face to face. That definitely helped me feel less isolated. You could see if where you were treated or another local hospital runs anything similar?

 

Good luck with your continued recovery

Gemma x

[Skippy]

Hi Claudette

 

Welcome to the site and to the family.

 

Its a long road to recovery but you get to the end in your own sweet time - no-one else's.  We're all different and all recover at different rates. 

 

The emotions that you're feeling are perfectly normal after SAH and I found that counselling helped me to deal with a lot of what I was feeling - as did finding this site.  I'm nine years post SAH now and love seeing people progress on here.  BTG was a life saver and a god send to me and I hope that you find as much support, reassurance and understanding as I have over the years.

 

Feel free to rant, rave, share and grow with us all xxx

[Macca]

Hi Claudette,

 

Welcome to BTG! You've dealt with an awful lot already.  What you say about your emotions is perfectly normal after SAH.  I'm five years post SAH now.  When it happened, I was in what I considered to be a desperate place emotionally and physically.

 

All the usual things about 'Why me?', 'Why now?' What about all the bad people, why didn't it happen to them instead?' 'How long till I get over it?' 'When can I go back to work?'  All of that and more.  Please don't beat yourself up about it.  It's just life doing its unpredictable things.  I see things more rationally now but I was all over the place to start with!

 

You may go and buy something new, get it home and realise there's something wrong with it -you go and exchange it or get a new part.  That's what's happened to you.  Something went wrong and you went into hospital to fix it - hey presto -a brand new you! It is the sudden, unexpected, change that has floored you.  if it happened over time you would deal with it in your stride

 

Yes you are lucky - as we all are on this site!  You won the lottery of life just as ticket buyers win money in the National Lottery.  Enjoy your win!

 

Keep talking to your doctors about any problems, keep hydrated and keep talking to us too.  Don't be isolated, that's why we are here.

Understanding is half the battle.  It's the not knowing that stirs fear.  So if we talk about it we can deal with it!

 

A problem shared is a problem halved as they say.  It's a pleasure to have you on here!

 

Best wishes,

 

Macca

[Winb143]

Hi Claudette,

 

I had mine 6 years ago and awoke only after shunt was put in a year later as I had Ventriculitis and Sepsis.

I say a year but slept most of that time as I put it  'in cuckooland'

 

This site was good to my Daughter first and then when I had shunt put in, I was able to use a computer myself.

 

This site has been so good for me as I know I am not alone and it isn't the end.  Yes,  my life has changed but I am here and we are all a help to each other, apart from when I sing !! lol

 

Keep your chin up and welcome to BTG and as Sami put rant and rave if needed xx

 

Regards

 

WinB143

[ClareM]

Hi Claudette, welcome to BTG. Sounds like you had an awful time having to wait so long with that pain for a diagnosis. Makes me realise how lucky I am that I was taken straight to hospital and that the doctor there recognised the signs.

 

It is early days for you still but well done for taking the step to join this community, I would be lost without it, BTG has helped me immensely with my recovery. There is always someone who will listen and won't complain if you rant - and I've had a few rants!

 

Keep drinking plenty of water, rest and eventually you will start to feel better emotionally and physically.

 

Look forward to hearing more from you.

 

Clare xx

[Sharlua]

Hi Claudette

Welcome to BTG pleased that you have been able to share your experience. After my SAH I was on an emotional roller coaster up one minute and down the next. It is life changing to know your not invincible and whilst you think you should be joyous to be alive I think I was in shock. I hope that this site does provide support to you and you feel less isolated it certainly helped me. It is very early days for you and just take it a step at a time. Take care

Sharon x

[Colleen]

Welcome Claudette,

I have to say that sometimes when I read what someone had to go through before getting a proper diagnosis, I am truly amazed they are still with us, much less writing intelligent messages. Human resilience is so unbelievable! The will to survive and prevail is a strong biological drive. When I came to after my SAH, after determining I had missed a day, I was concerned about when our dogs had last been fed. My poor husband had to drive an hour home in the middle of the night to calm me down. They pretty much decided then that I would survive.

That said, unfortunately the psychological effects take much longer to conquer. I am going on seven years. I haven't slept enough this week and my head has weird sensations that I know are are innocuous, but they trigger nerves that I should be past by now. (So my rational mind says). I'm not trying to discourage you Claudette, because you definitely will feel better and progress with time. But what you are feeling now is so normal for what you have lived through.

 

I was told that four percent of people who have an SAH survive with minimal deficits. Just hearing the odds is enough to keep you scared from leaving the doorstep, but hang in there and bring any question, any concern , any time to this site. I guarantee you that someone here has lived it and can help you through the hurdle.
Colleen

[Daffodil]

Some wise words in replies and welcome. I'm sorry it took so long to get treated but you are here and we celebrate that with you.

Just to add that the greatest gift you can give yourself right now is kindness. Imagine if this was your best friend this happened to, now treat yourself as that friend. Don't berate yourself for what you can't do, be gentle in pace with your recovery, be honest with yourself and others what is possible and celebrate all the small steps and always notice what around you makes you smile.

The worry and fear you feel is natural right now so don't bottle it up it just makes our bruised noodles feel worse but the feelings will pass and you can always try Wins famous advice which has worked for many of us. Sing a happy song.

[Claudette]

Thank you all SO much for your kind words of wisdom!  I can't stress enough how valuable it is to me having this forum to turn to for advice or a hug.  I shall take Win's advice and start singing!  Thank you.  xx

[Louise]

Hi Claudette

 

Warm welcome glad you found the site, yes its great just knowing others know just what its like...

 

Everyone has said it all, remember not to do too must rest as often as your body needs too, drink plenty keep hydrated and hope to hear from you again soon.

 

take care

[Winb143]

Sound advice lol xx

 

You'll be okay now you know there are a lot of us around, but you do think the worst when it first happens. xx

 

A woman came on here and said "its 22 years since my anni" and I was like this  "thank you there is a life after SAH" and looked up to the sky xx

 

I really thought I was on my last legs until I came on here and I have become the biggest nuisance on BTG lol xx (in both ways)

 

So welcome once again and take care of yourself .

 

Love

Win xxxx

[Patricia Jacobs]

Hi Claude

I've read your post and the replies. I'm so glad you found this site. Although this very much happened to you, it also happened to us - your family and friends (I am Claudette's sister everyone). But, I have my own experience, and do not quite understand exactly what you have been through.

I am glad you have found this site and can discuss and share your experiences with others who may have more of an understanding. I have now joined too and can, hopefully, support you a bit better if I can understand a bit more. Someone mentioned counselling. Do you want to try this option?

Anyway, I am here for you, as are the rest of the family. Let me know if you want to talk, want to be alone, want to visit, need company, want a certain food - whatever you want I will try to help.

Love you loads.

P xxx

[Macca]

Claudette and Patricia,

 

I would suggest you start to keep a diary.  When you read it again in 6months/12 months time, you will be amazed at the progress you have made.

 

Welcome, both of you to BTG, and Patricia, it is wonderful to see that you have joined to provide your support to your sister.

 

Take care,

 

Macca

[Winb143]

Patricia, that's my Sisters name also,

 

Keep moaning Minnies away from Claudette, people who tell you their troubles,  shhh.  Claudette I am talking to your Sis lol. joke

 

Also my Surgeon said no stress whatsoever so if Claudette get anxious sing with her and plenty of laughter xx

 

My cure for anything is  songs and laughter xxxx  Unless I have a row with hubs over my singing xx

 

Good luck to you both and welcome to BTG  xx

[Chelle C]

Hi Claudette & Patricia,

 

Welcome to BTG you will find lots of valuable advice and support here,

 

It`s very early days for you yet so take things nice and slowly, one day  

at a time.

It`s lovely that you have your sister join with you and I am sure you will 

both benefit from this site.

 

I know it has been a god send to us all, we are all here for the same reason

and we all try to help each other through the tough times.

 

Keep posting and I wish you good luck with your recovery

Love

Michelle x

[Patricia Jacobs]

Thank you very much for the love and support everyone. This is just what my sister needs.

Pat xxx

[Patricia Jacobs]

What WE need I mean.

[Bman250]

Hello ladies,

I'm a newbie also 10months out now. Though I frequented this site for 7 months until I joined it has been lifesaver for me. It's unbelievable that you put up with that headache and not having the correct diagnosis for as long as you did. We all know that headache and can relate to what you have gone through.

I remember crying all the time for the first month, it was actually something I really didn't mind, being the macho guy that I am crying was a new experience for me and felt kind of good. You have a family here and a lot of support and understanding. Make sure you get your exercise and plenty of water. You'll find that as you heal you will rediscover yourself and find that new normal that will be comfortable.

My best to you,

Bill C

[Claudette]

Hi Everyone (including you, Patsy!)

 

Thank you all for your support!  It's really made a difference knowing you're all there, helping to pick me up when I get down.  Up until last week when I joined Behind the Gray, I too was crying every day.  I felt scared most of the time, struggling to deal with my emotions and the physical difficulties I was encountering.  But it's been brilliant hearing all of your stories, and realising that I'm not so unique - there's loads of us out there, going through the same (or similar) problems.  It's really lifted my mood and given me an energy boost!

 

I realise that my mood and energy levels will fluctuate.  I still have a lot of issues to deal with but today I'm feeling good!  So, thank you everyone.  Things are already feeling better!

 

Claudette

 

x

[Karen]

Hi Claudette,

 

I'm glad that you're finding some comfort from the site.  Feeling scared is only natural and I don't know one of us survivors that didn't feel scared, it would perhaps be abnormal not to have those feelings? 

 

Time is a great healer and bit by bit, your confidence will return .... you can't put a time limit on it and it won't happen overnight as we're all individuals and some of us take longer than others with the healing process, both physically and mentally.

 

In my 9 years of running this site, I've seen people move on and move forward with their lives in a very positive way. When they first came to behind the gray, they were just like you and needed the support and comfort of knowing that they weren't alone. As time passes, their confidence returns and they need the site less and less, but in return they become the members who give advice and support, as they know how valuable that support is in the early months and years.

 

In my long winded way, what I'm trying to say, is that you will get there too Claudette   ... I wish you well. xx