Need a bit of help

[Louise]

A woman I know from where I used to live had a brain haemorrhage at the end of July, she’s been coiled, I faced my fears of re-visiting the hospital ward I was in & went to see her – it was ok as I have no memories of that time anyway & still don’t all this time later.

She wasn’t responding so they operated again must have worked because she’s home now. She’s back in 3mths for a checkup and then in 6mths for another op (don’t know what or why)

On Friday I got a phone call as she couldn’t think of who else to speak to, she’d been to the GP that morning and they weren’t all that helpful. She’s scared witless that it will happen again.....told her most people feel that way & she was in no way alone. She’s tired, cant sleep all the common stuff....

Said it was early days, everyone went through that mentioned this site but.

Unfortunately she’s not online (no computer doesn’t know the first thing about them) So I was wondering if you guys could tell her that she’s not alone.....I could print out the replies.

Her name is Liz, she’s 54 and things haven’t been great for her.

Thanks......

Edited August 17, 2010 by Louise

[laanka]

Hi

dont know if I can be of help but happy to support anyone as this is scary.Is she going back in 6 months for coiling?

Is it the SGH as there is a great support person not attached to the ward but the guys that do the coiling.

I am sure some people suffer post traumatic shock. There is not a lot of post discharge info ormaybe that is just me not asking for it.I thought headway were good to.

Let me know what you need happy to meet for coffee if any help.

[maggie]

Hello Liz, I had coils put in a ruptured anni in Jan 09 and remember only to well the absolute devastation ,the fears,the total bewilderment as to why & what has happened,and the emotions you are experiencing. The best advice ever given to me was from my specialist nurse before I left hospital who said that recovery is different for us all but one thing was certain that it was like taking 'baby steps'. Slowly does it Liz,take your time.Don't push yourself too hard the fatigue can be over whelming in the first few months.My thoughts are with you and hopes that you get the help you deserve. Cogratulations you survived have faith in yourself.Good luck and big hugs .Love Maggie xxx

[Gill C]

louise can she get to her local library for some computer time? Or a friend locally that can show her where we are? I for one would be lost without sites like this & to be able to get a reply syaing what I'm going through is normal.

Perhaps she also needs to contact Headwya for support at home isf she can't get online?

[KelBel]

c/o Louise

Hello Liz

You are definitely not alone. There are many of us here who can sympathise with how you are feeling right now.

It is scary, bewildering, upsetting, challenging, and lonely. Your family and friends can only try to imagine how you are feeling and it is difficult for them to understand.

I was very angry initially, and still am at times. I cried so much. I was angry that it had happened, and that I didn’t understand what had actually happened to me or why. I didn’t get any advice upon discharge and spent hours trawling the internet to understand what had happened to me, and what I should and shouldn’t do now. I was scared to lay my head down and go to sleep.

It is hard to accept that things will get better when you are feeling so rough, fragile and weak, but things do get better, it just takes time. Obviously we are all different and have suffered differents degrees of SAH, and some associated symptoms also, and it takes some people longer than others.

I remember when I first came out of hospital it was a struggle just to have a shower and get dressed each day, and some days I just didn't get out of my pj's and dressing gown...

I hope you are doing as well as you can be.

Take care,

Kel x

[Louise]

Thanks guys I thought that maybe some view aimed at her might help....

Bagpus, she dosnt know a thing about computer, and I'm 13miles away, thats why I thought maybe this was an idea...

Laanka, she hasnt said what she's getting done in 6mths, she got coiling tho at the end of July, she was in the same hospital I was, Edinburgh Western General....

again thanks guys.....

[Skippy]

Hi Louise

I'm going to look for the information booklet that Andy P sent me when I first had my SAH - it helped me a great deal. Once I've found it, I'll let you know and then I can post it to you to pass on or directly to Liz. Will PM you once I've got my hands on it.

[Liz D]

Hi Liz (from another Liz!)

I too had my coiling in Edinburgh Western in February 2009. I was 49.My neuroradiologist was Mr Robin Sellar. I was in wards 32 and 33 and spent 2 weeks in hospital. When I came I had to sleep in the spare room with the light on. I would wake up in the night having a panic attack, thinking it was happening again. I couldn't bare sleeping in the dark and had such fretfull sleeps that I kept my husband awake. It's also very scary being left at home alone at first. I slept for most of day in the early weeks, it took me 3 weeks just to be able to stand up rather than sit on a chair, in the shower! It's such a shame that we leave hospital with so little information about the recovery at home. If there is anything I can do to help please do not hesitate to ask.

Louise I have sent you a PM.

Edited August 15, 2010 by Liz D

[Tina]

Hi Liz I had my SAH just over 2.5 years ago, aged 45, i was clipped. When i came out of hospital i was very scared and felt lost, alot like Liz D has described. Emotionally i was all over the place. All of this is very normal but does get better, slowly but surely....it is a case of taking small steps, and everyone recovers differently. Just wanted to say...hang in there and know that we are thinking of you and are here to support you.

Louise what are wonderful idea to help Liz

Take care

Love Tina xx

[Janet]

Hi Liz

Shame you can't join us online but you have the next best thing having Louise to turn to. I had my SAH nearly 4 years ago and have been a member of this site for over 3 years and Louise and the other memebers were a lifeline for me in the early days. The panic and fear you're feeling is very usual in the early days of recovery just try to take each day as it comes. Listen to your body (very hard) and rest as often as you need to. Wishing you well with your recovery and look forward to updates on your progress from the lovely Louise.

[Vivien]

Hello Liz, c/o Louise

I think all of us who have survived an SAH feel very scared at first, but it does get easier in time. I agree with the 'baby steps' message, recovery is slow for a lot of us. Headway are good to get in touch with, they helped me a lot when I needed support.

Louise - I think the brain and spine foundation provide leaflets.

Vivien x

[Gill C]

Hi Liz

I hd my clipping just over 10 weeks ago & am the classic bad patient! I am not used to resting/taking it easy feel totally frustrated that I cen't do things I would consider 'normal'. am also struggling to cope with the emotional fallout of the operation as it scares me witless thinking about what could have happened & not knowing if it could happen again. The fabulous support on here has mde sure that I know to rest when my body tells me to, to cry or get cross if I need to get it out of my system. These feelings & worries are common to most SAH'ers & part of the recovery process. It helps to talk & if you need help to do that ask your gp or your neuro consultant for support.

WE're always here to listen if you need us. Take care

[JayKay]

Hello Liz and I'm sorry you have joined the ever-so-exclusive SAH club! It's a shame you can't join us online, but maybe you could contact the people at Different Strokes or the ones at Headway as there are support groups around. I found the guys from the Stroke Association who came to the hospital very helpful, although they tend to look after older patients.

As for me, I had my bleed 3 days before my 50th birthday in February this year. I had to have a craniotomy as there was too much blood to see where to coil, so it was major surgery as you can imagine.

6 months on, I'm glad I have had people around me telling me to take it easy or I would have rushed back to work. That would have been the WORST thing. It really does take a long long time to recover. You need to accept this, and that's the hardest thing because we look so "normal" to everyone else. Unfortunately, as I was only temping following a redundancy, I have had to claim benefits (the ESA), which is another saga which I'll not go into here!

There is an excellent booklet about SAH from the Brain and Spine Foundation that you can request if you can't get online. My neuro nurse gave it to me and I made my family read it so they knew what to expect.

Be gentle with yourself, realise that it might be a long road, but you are not alone. And there is no reason not to make a good, even complete, recovery.

Take care !!

[Louise]

Hi All

Thanks you all so much for your replies, gave them to Liz on Friday she phoned me Friday evening she was thrilled & maybe a bit over whelmed at them and says she nolonger feels alone...

she's not doing too good with the feeling of just exsisting so she's going to see the GP in the week....

Again that you all SO much.....

take care

[Louise]

Just had a phone call from Liz & she's sounding so more like her old self, she's been to see the GP last week, to asked all the usual stuff, what is an aneurysm, why did it happen, will it happen again, could I have prevented it....all the usual questions which he answered

A bleed

No one knows why

No

No

so she's a lot more postive although she's still to go in for another op its not so scarry now for her, also her BP was normal first time in 25yrs she said Great stuff......

Thank you all once again I know that all your answers were a great comfort to her......

[Karen]

Hi Louise,

I'm glad that Liz is in better spirits! xx

[goldfish.girl]

To Louise & Liz D, I just want to say 'hi' to fellow Edinburgh Western General patients as I had both my ops there too (although I live about 200 miles away!)

Liz, I wish you a speedy recovery and agree with what Jaykay said about not rushing back to work. I went back within weeks as I didn't understand how serious the SAH had been - through lack of information, and being in total denial!

Two years on, I am having a very hard reality check and if there is early after care/intervention available to you, I think it would be good to listen to what they say, although everyone recovers at different stages and in different ways. I do wish I had had earlier information but also am pleased I had no idea how long the recovery would be as I now know I gave it my very best (ignorant?) shot before I had to accept my new limitations.

Obviously, everyone is different and I hope you recover well and soon. The early days are VERY hard and it is great that you are aware of this invaluable information site so early on.

Take care xx

[Louise]

Hi there

To another Western General patient, wow 200 miles hope that you go to your local hospital when seeing the consultant for check-ups.....

I think that lack of information seems to be across the board with this there maybe information out there but you have to go find it & let’s face it when just out of hospital well its the last thing you want to do isn’t.....

I saw Liz on Friday night and although very tired she’s looking well, still having headaches you’d never know what she’d been through....

Her partner John was speaking with Ronnie about how things are, I just let them chat away, but couldn’t help correcting him when he mentioned that Liz keeps repeating things says she cant remember he thought she was doing it to annoy him....put him straight on that......

Take care....

[Skippy]

Hi Louise

I'm sorry I've not sent that leaflet yet - will try to get round to it at the weekend. I've been full on with work and shattered by time I get home, then I forget about it doh!!!

Will try to get it posted to Liz asap - give her my best.

[Louise]

Hey Sami

Its ok Sami, Liz spoke to the doctor who explained things really well to her, she's a lot better about it all (he astually spent a lot of time with her).....

Hope your not over doing things.....

take care