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Terrified - Sarah


Sarahsilly
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Hello from a newbie here

I suffered a SAH a few weeks ago in the company of my ten year old, understandably she is worried about me now I'm home and we are both alone as I am a single parent.

I had an unexpected bleed caused by a burst aneurysm and I was taken to hospital to undergo coiling, although they have said I have another aneurysm but they have left this one alone saying they rarely bleed in this location?!!

I am left with double vision and speech problems and sometimes I get weakness on my left side if I do too much. I don't know if that's normal? I unfortunately had vasoapasm which was treated by the noradrenaline route and I nearly died.

I feel on egg shells, conscious of my little girls worries, who now sleeps with her door wide open in fear of my demise. I try to be flippant however this has been a major shock and I am scared to even sneeze let alone cough! I am sure I am not alone?

How the heck do we get through this?!!! I don't know how to begin. I've no cash and need to visit the shop up the road for example and I can't even dare to do this! Fear of falling down, becoming ill again. Any advice will be greatly appreciated!!!

Thank you

Sarah xxx

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Hi Sarah

Warm welcome to the site, glad that you found us.

No your not alone we've all been there the feeling of being on egg shells will ease as time goes by (I know easy for me to say but it IS true)

Aw your poor daughter its not nice thing to witness nothing is at that age, again hopefully time...

Benefit office give them a call, Headway another usefull place for info and help. trip to your GP to explain to them your worries/fears and ofcourse your ailments...

As always someone else will come along with better info than I gave hang in there we've all been in the same boat...

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Hi Sarah,

So glad that you have joined this forum, you will get lots of support as we are all in/have been during the early days. Your poor daughter must feel so scared about losing you, she is being so brave too.

Have you had an Occupational Therapist come to see you? If not, please ask your GP so she can help. I found mine so helpful - she can bring equipment such as a kitchen stool, bathroom etc. to help you (me!) due to double vision, she can help with anxiety and talked through things like writing notes, a notebook etc., she did some relaxation exercises to help stress, she helped me with a disabled badge and bus pass and about PIP benefits to help the form etc. etc. She also arranged the speech therapy lady to come and do some word exercises and help to get my speech better, also ideas of brain apps to help etc. Loads and loads of help and they were so lovely, especially when I kept crying!

When I first came home it is all so awful and everything has changed, so please make sure you get all the help you need. Over the next weeks you will soon start to feel better and start to feel stronger and more accepting of what has happened.

Stay strong, Sarah

Alison x

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Hi Louise,

Thank you for your post. Any help or suggestions are great. I've been discharged from hospital with no support really and even less information apart from giving up the dreaded cigs which I have done since my bleed. I feel so sorry for my daughter as she was running around a car lot pleading passers by, and I feel so guilty that she now has anxieties a ten year old should never bear.

Life seems to pick up where its left, her friends come by, their mums not.

Nobody wants to know or help probably due to lack of interest as they have their own lives. Im isolated and as such I do wallow a bit, scared of even visiting a shop - I'm desperate for cash machine but I might screw it up.



I hope the being scared does ease.

I don't have many people around me but I've bitten the bullet and booked a cleaner at least! You all seem like a great bunch and reading your stories help me, and I hope the scared feeling of bleeding again will go eventually xxxxx

Edited by Tina
Line spacing added for easier reading :)
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Don't feel guilty Sarah I know that sounds hard but you couldn't help what happened it wasn't your fault & the fact your daughter was outside meant she was able to get help for you.

I would get an apt with your GP and see about an occupational thearipist your GP can get those wheels in motion...ask them how long it will be till the speech thearipist gets intouch say its hindering you...

I think you'll have been discharged but will be for follow ups...

So GP first off appointment..

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Sarah don't feel guilty just feel glad your alive to see your little girl grow up.

And the fear does go in the end but only you can get rid of it.

You need cash go and get it, you will be fine.

However get in touch with your neurosurgeon and ask how often you will be checked tell him you want to be checked the one operated on and the other one that is there. Ask them everything you want to know. Jess.xxx

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Hi Sarah,

As all the others have said above the first thing you have done is found this website which is a great support to us all. Whatever question/worry you have somebody has always been there already and can help ease your worries a little.

But again as above you really need to see your GP. You also need to ask them about occupational therapists. I have one who comes several times a week for memory and hearing reasons. I also have another lady comes to take me swimming/walking to help with the initial confidence that it sounds like you may need.

My children were very worried about me when I came home. My 5 year old (who is a little bruiser) seemed to wrap me in cotton wool but things seem to be getting easier there too.

Just remember you are never alone & there is always somebody who can help.

Emma x

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Sarah, I had my SAH nearly 9 years ago this year and my children truly suffered in the beginning ... they're very resilient, and they do get back to normal, honestly. My youngest did nothing but talk about it and after a few months, we were truly "all talked out" ...

It took quite a while for them to get some confidence back in themselves and for me too, that nothing awful was going to happen again .... time is a great healer.

Keep talking and keep reassuring .... both she and you will feel scared for quite a while .... that's normal and it will eventually pass.

I'm hoping that you have other family about you that can also help. xx

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Hi Sarah,

A warm welcome to BTG.

I wish that I could take away some of your worries and fear.

It's such early days for you, you're on a roller coaster of emotions.

It may not seem like it now but things really will get better.

My SAH was 3 and a half years ago, I had clipping surgery.

I have hazy memories of just before my SAH and early recovery. Family, friends and my Neuro Nurse Specialist have filled in some of my missing memories.

I also had double vision and was under the care of the Eye Hospital Unit for quite some time.

Your world as you know it has been rocked and it will take time, patience and understanding to come to terms with what's happened.

My daughter was also 10 years old when I had my SAH, she was away at the time, on holiday in France with my parents, my brother and his family.

So I waved her off, happy and healthy, the next time she saw me I was very poorly, a shadow of who I was, but still her Mummy.

My daughter has given me such laughter, light and strength.

However we have had to watch how she has coped with things as it's not at the time of the event she struggled, but in the months and years that followed.

Have you advised the school of this situation? She was at junior school when this happened and my husband went in to explain things to them.

We also have had to explain to her secondary school as last year we were called into see them.

She has been offered counselling through the school and through our GP should she want it.

We make sure we keep talking about things, that is the best thing to do, although we have had some tough conversations over the last couple of years.

Headway and The Brain and Spine Foundation are a great source of support too.

I hope that you make it to the shop, is there a neighbour or friend who could go with you?

All those kind of steps will feel like massive achievements.

I wish you well with your recovery, please feel free to PM me if you wish.

Have some great big cuddles with your daughter.

Take care,

SarahLou Xx

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Gosh! Thank you so much for your supportive messages! It's nice to know I'm not alone. I rang my gp who wasnt even aware of my SAH and said he would get me help ASAP but I don't know in what form.

I've not got a good network of friends and family really as nobody can drive to me or they are not in my area. Its sad how this horrible event affects our children so much isn't it? Poor little things.

I would love to know what my prognosis is long term but googling it doesn't help. Every sneeze and cough worries me and if I have a headache I'm paranoid! How do you all reconcile yourselves with your futures? Am I always to be careful? Or has this now coiled aneurysm secured me a normal lifespan? Sorry all the questions! Xxx

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Hi there. Welcome to our little band.

My daughters were 7 and 9 when I had mine. I went off to work and then they didn't see me again for 3 weeks which is when it was deemed the ICU sight would be not as traumatic. The kind folk here reassured me that they would be ok and here we are nearly two years on and that is the case. My kids have an empathy and understanding that most their age don't but they are ok, your daughter will be too. Don't be guilty, you didn't choose this.

You say you have good friends, my suggestion is to ask them for specific help, ' can you do this for me?' . Most people struggle knowing what help looks like and if you can ask them a bit more directly . Headway were fabulous , I strongly recommend you contact them, also Sarah Lou has said about the school, make sure you write and tell them and ask for you daughter to get some support and that they ring you.

Don't try and go to fast. Yes you need the cash machine but do you need it today ? Try a little walk each day, a little further each time with the end goal of the cash machine. Get your daughter to help you withdraw it, mine know my pin and used to help me....I will be changing it before they hit teenage years don't worry:lol:

Life expectancy? Who really knows. It's a good procedure , we are safer than we were before our bleeds probably so try to trust in it send enjoy each day you are given . Trite I know but works for me.

Try to look at the positives, write down each day what was good and better, it will help you see the small strides you are making. It's like a baby, you don't notice all the development but it is there.

It does improve, it just takes time.

Edited by Daffodil
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Sarah I am so pleased you called your GP well done, No usually we have to tell them stuff you should have had a letter from the hospital to hand into the GP that's usually how they get to know...

Like you I wasn't one of the lucky ones no real good friends that helped me out, & as for family they didn't (still don't want to know) lucky it made me a stronger person...

As someone on here said at times 'Google' is not your friend.

Yep it does improve takes a long time though its not like the cold or a brake but it will improve and you've taken the first steps by calling the GP....

Baby steps and rest..

Edited by Louise
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Hi Sarah,

Welcome to BTG xx

It is good to have a place like this to pour your heart out and when down it is good as other have said as "they have

all been there".

I used to sing songs I wanted at my funeral (morbid Win) lol drove the family potty.

Was not until I found BTG that there is life after SAH.

I wish you and daughter well now cheer up we made it. xx

My daughter worried also and she isn't young, we blubber now and again. She is my rock, she is my best pal.

Be Brave and try not to worry. Now get help xx

Love

WinB143 xx xx

Edited by Winb143
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Sarah, I would really step away from Google ... I did the same and always found the worse case scenario. We haven't lost any SAH survivor on this site, so take heart lovely. I still have a neck left on my aneurysm and may be have one developing on my left hand side of the brain....I'm due to be scanned again next year, which will be 10 years on from this bleed.

Still alive and kicking since 2005 ... I know what you mean about sneezing and coughing ... it freaked me out for quite some time and only normal to worry about it. Time is a great healer and you will restore your confidence in your body/brain.

Good advice has been offered to you and your GP should also have a copy of your discharge notes from the hospital and should now be looking after your care and making sure that your blood pressure/pain relief is monitored etc.

Always go with a written list of questions that you need to ask and just hand it over to your GP ... I still do that... :wink: xx

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