Karen

Hi Sami,

You are doing so well...............a lot better than me and I'm way in front of you! So, just remember that!!

If you have a bad day......just write it off! Hope that your bedtime is better this evening.....nothing wrong in a bit of chick lit.......but Stephen King.....even though I love his books.....probably not such a good idea!!

Take good care of yourself and sweet dreams!

K x

Hi Sami,

thanks for the pics....the ducks are sooo sweet!

Glad you're feeling a bit more upbeat......no two hours out of the day are the same some days........sometimes a walk is good, even though making the effort can seem hard.

It's been a really warm and humid day down here......but now it's looking really stormy and it's windy. So, wondering if we are going to get the bad weather forecasted.

Just finished cleaning the house.............jobs that used to take me a couple of hours, now seem to take forever.....but at least it's done!

Looking forward to my glass of wine later.......it's the only thing that makes me feel relaxed now!

Anyway, speak soon,

K x

Just a quickie! I forgot to say, that after the DVLA said that I could drive again, we also had to let our motor insurance company know that I'd had the SAH......the premium remained the same, so that was okay, it just had to be put on the records etc.

K x

Hi Sami and Andy,

We must have been all posting at the same time! I'm skiving and still haven't finished the cleaning......so I'm shutting this down in a sec!!!

Good news Sami, about your driving licence......I lost mine for 3 months, but didn't feel able to drive until 4 months. Still it's such a good feeling just to know that you can!

Love the idea of having ducks in the back garden......I'm sure the dog and cat would also, but not for the same reasons! Do you have a digi camera to take any pics of them, as would love to see them!

Andy, are you taking a day off? Hopefully, your not ill.....so hope your day is good.

Take it easy,

K x

Hi Sami,

Sorry you're feeling a bit down today. I never went to a support group, as couldn't face the car journey, especially in the evenings when I felt just too tired to do anything. If the group had been closer to home, then I would have, but probably not until I'd reached the 3 month recovery stage.

After my SAH, I didn't really want to talk about my experience much, I wasn't in denial of it, I just wanted to get my life back to normal and felt lucky to be alive. It was only at the 6 month stage that I realised my recovery wasn't going to be as fast as I first thought, so I joined an online support group, run by Salford and Southampton Neuro.

It helped me a lot, just listening to other peoples experiences.....at least I wasn't going nuts......other people were experiencing the same or worse. At this stage I also realised that I wouldn't be able to return to work. Things started to hit home and I had to face reality, that I was looking at a recovery period of 18 - 24 months. Not a good time for me and I really didn't think that I would get beyond the 12 months with my sanity intact....but time started to go faster and I gradually accepted my limitations, as the more I fought them, the more frustrated and angrier I would become. I would have days where I just cried, not in self pity, but pure frustration. The family got used to me taking myself off to the bedroom and bawling my eyes out. I used to feel much better for releasing my feelings. These feelings have got less and less with the passage of time. I still have the odd day when I get like it now.

I know that Andy P found a support group very helpful to his recovery, but I can understand why you're a bit apprehensive. I suppose that you could give it a try, if you're not comfortable with things or don't feel up to it, you can walk away and return when the time is right. When are you going?

Sleeping and rest is definetly a key player, if you are over doing things then you will notice that it does tire you easily and your mood will lower. It seems to be the brains way of making you slow down and rest up. May be, you will have to do things in what I call "bite size" pieces for a bit and then gradually increase once your stamina has improved. It's quite normal to feel like this after the SAH, so don't be hard on yourself if you have to give into it.

You are right in what you say about sleeping and going to bed without worries. It definetly does help your mood in the morning. Most nights I tend to read before going to bed, something light hearted or funny. One of my favourite books was from the series "grumpy old woman".....it was good to be able to laugh before I shut my eyes and it really helped my mood the next day. Sounds ridiculous I know! What about meditation CD's or something soothing that you could listen to?

Anyway, must go and hope you're feeling a little better.

Love Karen x

Hi to all,

Thought that I ought to start a new discussion, as Karen's Update is getting a bit big!

Well, I'm not sure how my day is going to go, as I had an awful nights sleep and kept waking up every hour or so, wide awake......also hungry!

So goodness knows what was going on. Will probably have to take a nap later.

Anyway, will look in later on and see how you guys are doing.

Take care and hope the day is a good one,

Karen x

Hi Andy,

Many thanks for your article, it's great! (Hope you don't run out of ideas!) I'm not doing too badly today, a bit better than yesterday, but still tired. Get fed up with the fatigue and the blips after 14 months. Still, my mood has picked up, which is the main thing that I'm always grateful for.

Have been doing a little bit of sewing tonight.....making Christmas Decs.....Yes.....I know it's only September! Be prepared is my motto! I love Christmas!

How's life with you? All is very quiet here and not much news at the minute. I've been getting a few offers of links with this site, which is encouraging. Could just do with a few more people posting etc.....but hopefully we will get there!

Gerry from the Val Hennessy Trust e-mailed me the story of the trusts origins, so hope to write an article about its background, if he gives me permission. He also mentioned that Alison Wertheimer used his drop in centre for some of her book interviews. Small world isn't it.

Anyway, another early night tonight for me.......so will speak soon,

Karen x

Hi Sami,

Well, I think that you are doing brilliantly! There's no way that I was able to manage shopping at you stage and still can't most days!.......so you are recovering remarkably! Yep, it's brilliant to have some good friends....like you I'm blessed with a couple and it really does help to lift you.

Did you suffer from migraine heads before your SAH?...I did and lots of people that I've spoken to also used to get migraines. They reckon there's no connection, but it makes me wonder.

What a pretty name your daughter has......she sounds as though she coped brilliantly.......kids certainly make you keep going! Two ducks now, as well to look after.....do you live in the country? I love Cornwall, we had a holiday there just before I was ill, such a beautiful place.

After a SAH, you certainly do take time to listen to the birds and smell the flowers etc.....makes you appreciate lifes small things a whole lot more!

Glad that you've had a good day. I'm feeling a bit better now also, which is good. Enjoy your reading!

Take care,

Love Karen x

Hi Sami,

Glad to hear that things aren't too bad with you today! Just finished some ironing (which is a bonus, as didn't think I was even going to get that done today!) eaten some lunch and now taking a rest. Just waiting for the shopping to be delivered.......thank God for the internet!

Yes, I think that I can feel where I have the coils......some sort of sensation anyway....not all of the time, but it's where I can feel like a heartbeat or pulsing movement. It's a strange feeling....I had my coiling on my posterior communicating artery, so I get the feeling on the right hand side, back of my head. I've also asked the question about this, but so far haven't had it answered. Not sure if anybody else reading this message will be able to answer this for us??

I live down south near Poole, in Dorset and the weather is beginning to look a little dodgy.......apparently we might get the tail end of a hurricane over the next couple of days, but it's definetly starting to get a bit windy. Might see if I can get out in the garden and put a few things away later....jut in case!

Anyway, feeling better than I did first things, which is a bonus!

I forgot to ask you, how's your little girl dealing with everything? I had a warning bleed when my daughter Lauren was probably just a bit older than your's. I know that this time around, it affected Lauren badly, but she has got used to her Mum not being able to do quite as much as she used to. It's made her a lot more independent, but that's not a bad thing. I still feel as though I have a fair way to go with my recovery and could just do with a couple of good months, to give me a much needed boost.

Speak to you soon,

Karen x

Hiya,

Well I'm going to have a quiet day today...still in my pj's and still feeling tired and headachey. It's nice to know that I haven't got anything planned, so I don't have to do anything unless I feel up to it!

Just over a week now until I see the Doc.....but these spells of heavy heads and tiredness just drive me nuts! Definetly going to speak to him about anti-depressants, as the longer this goes on, the worse it is to snap out of the gloom. Hopefully, I will feel a little more upbeat later on.

See you later,

Love Karen x

Hi Sami,

I'm having a tired day.........should really start taking my own advice re: resting up!.......have done too much in the last few days and my body is paying for it today. I liken it to somebody flicking a switch in my head and turning me off! There's never too much warning when the fatigue decides to kick in again. I still can't believe that 14 months on, I can still get so tired, it feels never ending.

Had a good mate over for coffee this morning.....it was great to see her and catch up with the news......but she went on early, as in the end I couldn't even hold a conversation. Anyway, just had a 2 hour nap!

Try not to worry too much about having a seizure.......like you, I've constantly worried about having one, especially after coming off the seizure drugs. I'm calmer about this now, but worrying about seizures also caused me to have anxiety attacks and I was put on to Beta Blockers. Try your best to divert your mind from thinking about them. I know its hard......but don't end up like me!!

No, there's nothing wrong with doing the normal stuff.....such as hair, make-up....... I think that if you look a mess (like I do at the minute after napping with hair sticking up etc and panda eyes!) it doesn't make you feel good. So, if I'm up to it, I always try to "put a face on" etc.....it's good for the spirit!

Good also to hear that you're making plans to get out and about, which is great. You're doing really well!

Anyway, still so tired, (lying down on sofa with my laptop) It's going to be beans on toast tonight for dinner or any other toast combination.

Will look in again this evening,

Take care,

Love Karen x

Hi Sami,

You're doing really well.......keep positive.....so glad that today has been good...............hope that you have a nice relaxing, bubbly bath and a chill out..you deserve it.......remember, be kind to yourself!

Speak soon,

Love Karen x

Hi Sami,

I'm so very pleased that you've been able to obtain some info from your Doc.......you seem a lot happier and hopefully he/she has pointed you in the right direction! Sounds as though you have a good one! Wish all GP's were as helpful as your's!

Well done, you've probably achieved something that takes the rest of us months to do!

Hope that you had your rest/nap.......? Do take it easy though, no matter how you feel, it really is essential to take a rest, especially with kids!

3 new people have joined the site today, so really pleased! Did wonder whether this site would work out.....but I think that being able to talk is really good and essential with recovery.

Anyway, so glad that you've been able to get some help,

Love Karen x

Hi Sami,

So glad to hear that you are feeling much better. It seems to be the thing with SAH recovery, that it's very up and down, both mentally and physically. Most of us liken it to a Rollercoaster ride - one day up and the next down etc. My recovery has been like that all the way along.....you do gradually get better, but I found that the milestones were so slow coming, that I really didn't notice that I had turned a corner.

Sleep and rest appear to be a key player in the recovery......so please make sure that even if you don't feel like taking a nap, that you will put your feet up and watch some daytime tv or something!!! You are still very early on with recovery, so don't overdo things even though you may feel up to it.

Speak to you later,

Love Karen x

Hi Sami,

So very sorry to hear that you've been through the mill this weekend.....good luck with the Doc today and let us know how you get on....will be thinking of you.

Your experience of the lack of aftercare, post SAH seems to be the norm. Personally, I think that there should be follow up care for at least the first three months, if not longer. It seems to be that once the hospital have "fixed" the problem, then your basically just left to struggle on, not knowing what to expect or what's normal in recovery. I have obtained more info off the internet than anywhere else.....when I've asked the medics the questions, they just haven't been able to give me the answers. They say simply "that they do not know" or aren't qualified in this area. When you're struggling with the physical and mental aftermath it's just not good enough. Hence the need for sites like this one.

Anyway, keep banging on their door and if you're not happy with things, knock a little louder!!!!!!!!!! At the end of the day, the medics can walk away, but you have to live with what you're experiencing and you shouldn't have to struggle.

Take care,

Love Karen x

I'm 35, married and have a nine year old little girl. I was on holiday at the time of my bleed and just felt a little weird when it happened. Within the time it took me to tell my husband so I had lost the use of my right leg and looked like I had had a stroke. My husband called the ambulance and I was taken to Barnstaple and then transferred to Derriford in Plymouth. They carried out a ct scan and found two anuerysms - one had burst and the other was next to it. They coiled them both via the angiogram and so far so good. I've had another scan since and all appears to be fine.

Sami, (RossiGirl)

Hiya,

Well, 14 months on and I'm still ultra sensitive to noise, still hate crowds etc. (Probably because of the dodgy eyesight and find the movement too much!)

Does anybody else find this?? Could this be depression related or just the SAH aftermath?

I'm not quite so jumpy now, but when I'm having a "tired" day.....anything that moves frightens me out of my skin!

Love Karen x

Hi Andy and Sami,

Thanks for your replies.

Andi - How's Heather going? I know that you said that she had picked up and was taking more care of her appearance etc......that must be a good sign in itself? It was really interesting to hear about your experiences in Thailand re: dehydration.......I've only been taking the Isotonic drinks with electrolyte, for a couple of days......but they do seem to help.....not sure whether it's purely coincidence or not.....but I will keep going with them, as I certainly feel as though I have more energy if nothing else!! Do you think that there's something in this or not? Oh well, watch this space!! How are you coping with everything? It must be so hard tryng to juggle everything.

Sami - No, I didn't have siezures before the SAH. On the night of my SAH, I had 3 Grand mal seizures and a seizure after my coiling op, due to low sodium levels. Did you have seizures before or after your SAH? I've found it very hard to come to terms with and still worry about having a seizure now, even though I've been seizure free since the SAH.

Don't be to worried about your feelings about being left alone. It's perfectly normal, you are so early on with your recovery that you are bound to be feeling as though everything is up in the air. Honestly, it does all get better with time and even now, when I'm having a "bad day", I still don't like being left on my own. Do you have family around you? I used to have many days when I would just sit and cry. Cry out of tiredness, the trauma, fearful for the future and cry that my kids might have lost their Mum. I seemed to have a million and one things to cry over.........but it does get easier with time. Don't get me wrong, I still struggle now, especially with the physical stuff that I'm left with, but it does improve. Just be kind to yourself, listen to your body and talk!!!

Hope that the day has been kind to you both,

Take care,

Karen x

Hi Sami,

It's really good to hear from you and please don't feel like a fraud......your experience is the same as ours.....some of us have been left with ongoing problems.....but everybody here is sharing a common theme and we can all help each other out and share our problems!

You are very early on in your recovery and I think that you have to listen to your body....when it's telling you that you are tired......rest up! I have found that sleeping is really important to recovery and if I don't get enough, boy do I suffer the next day!

I still have good days and bad ones. The bad ones, I try to forget about and bin them, like a bag of rubbish. Having good friends and family is really important also. Just hope that if you can't talk to them, then you will talk to us. Doesn't matter how small the problem, you can share it with us and if we can help, we will!

If you feel like writing your story and the background to your SAH, then please do so. You can post it here or write it under "submit article". It's really good to be able to know a little of your background and your circumstances and I think that it also helps others. Just keep coming back to us and share your feelings!

Take care,

Karen x

Hi to all,

Just booked in to see the Doc at the end of the month. He's good, hence the waiting time! Have been wildly searching on the net for an answer to my ongoing problems. Hate doing it, as makes me feel quite scared at what I find sometimes. Often don't feel as though I have a choice, as the medics don't seem to have any suggestions.

I have occassions where I feel as though I might be going into a seizure. weird head pain/pressure, weak leg, muscles spasms/twitchy muscles, dizziness. Still, find it all very frightening when it starts to kick off.

Anyway, to cut a long story short, I did wonder whether my sodium levels were getting low. I remembered that this did happen just after I had the SAH and I went into a seizure. So, after searching the net with my symptoms etc. it came up with dehydration and lack of sodium. (I do drink lots of water anyway.)

Today, I decided to take a Lucozade Isotonic Sports Drink with electrolyte to see if it helps. So far, so good, not sure whether it's purely coincidence or not, but it's certainly perked me up....... anyway, it's worth a try and I will drink a bottle a day to see if it does the trick!

Just hope that it's that easy, but not holding my breath!!

Take care all,

Karen x

Hi RossiGirl,

Just to say "hi" and a very warm welcome......look forward to hearing from you.

Karen x

[Hi Andy P,

Well as you know, I really enjoyed my interview with Alison Wertheimer. However, I did find it quite tiring, but would have loved to have asked Alison more about her own personal experiences of SAH. Still, being the motor mouth that I am, I ran out of time and steam! I'm very much looking forward to being around and seeing the book published. I might even buy a copy to present to my own local health centre! Even though SAH, seems to be so common, I still wonder why GP's fail to diagnose this extremely serious condition. The mortality rate of SAH is dreadfully high and it seems that lack of action by GP's is part of the reason why. Just wish that they would trust people's instincts a little more and start to listen.

As you are all aware by my previous postings, that I'm still experiencing problems post SAH, but now, I'm not content to sit back and leave my life in the hands of others. I just hope that anybody else out there, reading this and experiencing problems of their own, will trust their instincts and go back to the medics to get some answers!

Anyway, if you are reading this Alison, I really enjoyed the interview and a big "thank you".

Karen x

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Hi Annie,

Dover is about a 3 hour drive from where we live, it's a small world really, isn't it? Your work sounds lovely......You should let us know the titles of any books that you've illustrated, so that we can take a peak at you work!! I would have loved to do what you're doing, I'm so envious of your talent!

You are very right about us being lucky that we have a National Health Service in the UK. We do have the habit of knocking it, but it's certainly better than having nothing at all.

Lauren's party went very well. A bit too noisy for my liking, (and probably the neighbours) not sure why teenagers today have to speak so loudly. It's almost theatrical when you're listening to them. I think that the boys were worse than the girls, but a good time was had by all, however I was very glad to see them all go home! Hence, my tiredness today....

Eric is off to Scotland tomorrow, working away, until Wednesday. I still don't like it when he goes away. I suppose it's going to take a while to re-build my confidence again after this last bout of illness.

Anyway, you take care of yourself Annie,

Love Karen x

Alison Wertheimer's Book

andyp writes "A quick note to all-and some will know already of Alisons Book about journeys of recovery from SAH- due out in 2008.

Has anyone else been interviewed?

I had a few hours with Alison on tuesday which i found sort of therapeutic in a way.

I am sure the book will be of great benefit to families and new sufferers of SAH ..there really isn't much about!

Also Southampton hospital should soon have their DVD ready for patients and families as well as health professionals..did anyone take part in that ?

Also what sources of help has anyone found??"

(This article has been submitted by andyp under the "Articles" category, as well as being posted in the SAH Discussion.)

Hi Andy P,

Great to see you on the board! Yes, I've had a better day.........it was a little hard to drag myself out from under the quilt this morning, but managed to give myself a kick up the backside. I managed to achieve quite a bit today and it's lifted my mood. I'm feeling physically better, less tired, but it's knocked my confidence again. Still, I suppose with time it will improve. Just wish that I could get at least 3 months of improvement under my belt, before anything else crops up.

Lauren's birthday barbie is tomorrow, so have had the pleasure of cleaning out the barbecue. Everybody here loves barbecues but nobody ever cleans the damned thing out! Spent the afternoon sorting stuff out for her party and blowing up balloons. I can't believe that she will be 16, time flies.

Anyway, glad that you've joined us!

Karen x