Karen

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

Hi Annie and Andy,

Thanks for your replies. I'm still feeling a bit numb, let down and frustrated by my hospital experience. I can't believe Andy, that you are unable to get any help at all with looking after Heather and Louis. I can well imagine your frustration over it all. I remember when I first came out of hospital having to fill in forms for incapacity benefit. What a farce that was.....It took them 3 months to decide that I wasn't entitled to it.....I have never seen so much red tape and bungling. It seems that some people are able to milk the system, left, right and centre and the people that genuinely need help aren't offered a bean.

A good friend of mine has a disabled son, who's now 16. He has severe learning difficulties and physical problems. He also has seizures, which are hard to control. She's had to fight all of his 16 years, just to get the minimum of help with him. She never complains and I really don't know how she's coped with all the problems....nothing has come easy to her and as a carer, she still doesn't get the help that she shoud have. In my eyes she's a Saint and deserves so much better.

Do your friends or family help you out? You sound as though you could really do with a break?

Annie, thanks for your support and I am learning to take more rests throughout the day. I am getting more concerned that I'm feeling so fed up. I can't seem to find the "spark" that normally re-ignites me after a bad couple of weeks. If I continue like this, then I will definetly have to get some help with these feelings.

Love to you both,

Karen x

Hi Annie,

Eric has been with me throughout my scan etc. The MRA (MR angio)shows up the arteries a lot clearer than just being scanned in the MRI machine. Still, I will stick to my 'gut feeling" that something wasn't right last week. I have been right in the past with my instincts and I don't want to start doubting myself. I'm afraid that if I do and if it happens again I won't listen to what my body is telling me. In the past I have had a tendency to listen to what the medics tell me and take it as read and it's been to my own detriment.

I think that's probably one valuable lesson that I've learnt and that's to trust and listen to what your body is telling you. I just don't want to take the risk of putting my trust in anybody else, as twice now, they haven't been right. I wish that I could, but I just can't.

I will just have to see how I progress in the next few weeks and if I don't feel as though I'm improving, then I will go back to my Doctor. Nobody seems to be able to give me any answers as to how I shoud be feeling. I know that my eye still gives me quite a bit of pain, but again I can't get any answers from anybody as to "is this normal". It's pretty frustrating, as I'm nearly 14 months on from the SAH.

I still try to remain as positive as I can be, but it's the mental side as well as the physical side of stuff that you have to deal with. Just hope that somebody keeps looking out for me!

Thanks for your good wishes though and they really do help me.

Take care,

Love Karen x

Hi to all,

Just had the results of my MRI.....They are negative, which is great news, but still wondering why I was experiencing what I did?? Would have been a little more reassured if I they had given me a MRA, as scheduled, but just going to get on with things and will put it all down to another "blip"in my recovery.

My daughter is 16 on Friday, so she's having a little party with friends. Have busied myself with decorating and cleaning the summerhouse + barbecue in anticipation of Friday night. Just hope that the neighbours will be talking me to me the next day! Still, you only live once and I'm just so glad to be able to enjoy the experience!!.

Take care all,

Love Karen x

Hi Annie,

Firstly, I hope that you are keeping well, (before I get too wrapped up with my own problems!)

My scan was carried out this morning. I'm feeling really fed up, abandoned and let down by the health service in ths country. I'm sure that I can't be the only person to have experienced problems and it just makes me so mad!

Well here goes! At first I didn't think that the local hospital were even going to carry out the scan, because of the metal coils in my head. My coiling was carried out in a Neuro specialist hospital about 20 miles away, therefore I'm dealing with two hospitals that in an age of new technology etc., can't seem to be able to communicate with each other, or want to take any responsibility with my aftercare. I'm trying not to get frustrated, but jeez......it's so hard!

Considering that the hospital where I was scanned today, is the same hospital that I was admitted to last week, you would think that they would be able to get it right? May be I'm asking too much? After ringing the hospital where I had surgery, they agreed that I could be scanned.

Anyway, finally I had the scan, but they didn't give me the MRA (where they inject dye into the arteries) but only a MRI. By this point, I had totally forgotten about the dye. I put it down to my short term memory being kapput also.

I asked them when I would get the results and they told me in two weeks time. At this point, I was feeling so dizzy and rough after being in the scanner for half an hour, (couldn't even sit up for a couple of minutes) that I really couldn't be bothered or have the energy to say any more. Just felt totally miserable and let down.

I decided to ring my GP at my local surgery and see if he can do anything to speed up the hospital scan results. Anyway, he's going to give them a call tomorrow.......................I'm not betting my last dollar on getting any results, but hey, I still live in hope. (Would like to think that I'm a "half glass full" person and not "half glass empty") I hate to think that my experience with SAH is going to make me any different as a person.

I will keep you posted!

Love Karen x

Well. tomorrow is the day when I'm in hospital for my MRA. Not looking forward to going into the MRI Scanner again. Is it something that anybody ever gets used to? This will be my 4th time and I still liken it to being stuffed into the inside of a toilet roll tube. I shall try to keep my eyes shut as I'm going in, but I bet that I will have to take a peak........wish they would blindfold me as well as putting in ear plugs! I'm not normally claustrophobic but find it hard to relax.......especially when they hand you the panic button and then walk out of the room. Oh well, watch this space! (May be I'm just a whimp!)

They will be scanning for any new aneurysms and the possibility of a re-bleed from the coiling that I had carried out last year. Lots of mixed emotions tonight and finding it hard to sleep.

I want them to find out what's been kicking off with my head again, but really hate the thought of another hospital stay. Beginning to wonder whether having the aneurysm clipped would have been a better option long term, even though the procedure is riskier.

A bit fed up with it all though and too much time to think about it. Still, hopeful that they might give me some peace of mind either way. Just want some of my life back!!

Will let you know how it goes!

Love Karen x

Thanks Annie for your reply. Yesterday wasn't too pleasant a day for me and even though I thought the dizziness was better in the morning, it came back with a vengeance in the afternoon. I've decided to start using the Journal/Diary on the site and keep a log as to how I feel each day.

I finally got myself off the sofa at 3.00pm yesterday and had a soak in the bath. I picked up after that and the day improved.

I know that if I don't rest up regulary during the day, then I really pay for it. Lauren has been great this week and she's looked after her old Mum really well. She's back to school next week and I shall miss her not being around during the day!

Hope that the day is kind to you,

Love Karen x

Just to let you know that my scan will now be done on Monday. Wish it was sooner than that and it's taken nearly 2 days for them to come back to me. I've been told that if I deteriorate before then, to go straight to the hospital........not sure whether that reassures me or not!

Take care all,

Karen x

Andy,

Your reply was thoughtfully and beautifully written.......Heather is a lucky lady!!

Karen x

Well Folks, I'm still at home. The hospital called me this morning to say that they were pondering over admitting me back to the ward or bringing me back as a day patient. They were meant to be phoning me back this afternoon, but no call came. So feeling a little despondent and wishing that I had stayed in hospital. They assured me that I would be scanned today before I left on Saturday, otherwise I wouldn't have left the bed.

I'm feeling a little better today and the pulsing/pressure feeling in my head has got better and not quite so intense. However, the fatigue has kicked in once again. I just need some peace of mind that the coils are doing the job that they're meant to.

I have lost some more weight as my appetite is nil.......perhaps I could introduce the SAH diet?? Still, there's more than enough of me to cope with that one!

Anyway, I will just wait and see what tomorrow brings........

Hope all is well.

Love Karen xx

Hi Annie and Andy,

Thank you for your lovely messages. They really do help such a lot. It's good here tonight....Lauren has got some mates over in the summerhouse and she's cooking pizza for them. I can hear the conversation buzzing away in the kitchen..........it feels good to be normal at the minute.

Another tired day today and some more scary head pain. In one sense, I'm looking forward to going back to hospital tomorrow. Like you say Annie, someone can look after you and you can pass your burden over to them. You summed it up beautfully and I can see why you are a writer, your words are very comforting.

Andy, really sorry to hear about the financial problems that you're having and it must all be such a worry for you. Take care of yourself. So glad that Heather has picked up, it's wonderful news!

Speak to you soon,

Love to you both, Karen x

PS Annie......I've had to cancel the pamper day..........was so looking forward to it...............still hopefully another time!

Love Karen Xx

Hi Annie and Andy,

Thanks for the big hug, as I certainly could do with it. I was taken into hospital on Friday, as I was experiencing the Mother of all headaches and eye pain etc., along with a load of other stuff. My Doctor was great and phoned the hospital to say that I was coming in. I came back home late yesterday afternoon (great birthday!) after begging them to let me out, I was so sad being in there (I shed so many tears, think that the other patients thought that I was a loony!). They think that my aneurysm might be leaking, so I'm booked in for a MRA scan on Tuesday. They wanted to keep me in, but said I would promise to rest up if I went home and if I felt even worse to come straight back in. My Obs were fine, same as the other bleeds, when I had normal blood pressure and pupil reactions etc. So, I'm not sure whether that's a good sign or not.

My emotions are all over the place...........so excuse my typing as I'm finding it hard to think etc.....It feels like a ****** nightmare again and have mixed feelings as to what they might find or whether i want them to find anything........probably doesn't make sense. I'm so tired at the moment and feel just like I did when I left hospital last year. I feel that something has definetly kicked off again. I don't know how I'm going to handle this, if I have to go through it all again. It's feeling very surreal and I'm hoping that I will wake up and it's all going to be a bad dream.

Lauren is so upset, bless her and I really don't want to put the family through this again. The house is a torrent of emotions.

I have a great need of feeling that everything is in order and have packed a bag for Tuesday, just in case I have to stay in hospital or earlier!

Anyway, hope all you guy's will keep posting on the board. If I do have to stay in, then hopefully Lauren will be able to post my news to you.

Love to you all and big hugs,

Karen xx

Hi Andy,

Thanks for your reply. Well the dark cloud over me has remained today, along with most of the physical symptoms as well. Eric, is away in Jersey and will be back tomorrow. It's strange isn't it, as when I get these rough patches, he never seems to be around. I'm sure that I feel worse because he isn't here and more worried because I wonder how the kids would cope if anything did start to kick off again. Everything seems to be going wrong at the minute.

Poor Lauren (my daughter) has had to put up with a tearful, good for nothing Mother again today.................she was also in tears earlier, she hates seeing me like this. Makes me feel so guilty for putting her through this. Kids shouldn't have to deal with stuff like this.

She's gone off shopping with her mate, so I'm really hoping that she will feel all the better for it. Bless her, she's been great. I've managed to get to the shops and buy her some of her favourite chocs.

I was bought a pamper day for my Christmas pressie last year and last week I finally booked a date at the Spa for Sept 1st. We are also treating Lauren, as part of her birthday pressie, I just hope that I'm feeling up to it, really don't want to have to let her down.

Anyway, won't depress you any longer................just hope that all is going well with you and Heather.

Well, tomorrow is another day...................God, I just hope it's a better one!!

Take care,

Karen x

Hi to all,

Well, today has been horrible. Woke up this morning feeling dizzy and nothing unusual in that. I had been asked out for a pub lunch by a friend, which was great. Still don't get out as much as I would like to, so try to make the most of it when I can. I did nearly cancel our date as didn't feel very good at all, but thought no, I'm sure that I will feel better for making the effort.

She had very kindly offered to pick me up, which was great as I really didn't feel up to driving, even though the pub/restaurant is literally a 5 minute drive. I took my daughter with us and my friend also took her 2 girls, as they are all friends with each other. Lovely meal and great conversation, but I kept getting hot flushes. Suddenly I had a high pitched noise in my ear (which always frightens the living daylights out of me) and felt as though I was about to be sick. I sat there trying to focus on everything going on around me and trying to look and act normal. I could feel the pulsing sensation in the back of my head and I felt as though everything was in slow motion.

I didn't tell anybody that I was feeling rough and luckily managed to stay for another half an hour. (which felt like the longest half an hour I'd ever spent) At that point I really couldn't stay any longer and just made an excuse that I had to get back and tried to be as cheery as I possibly could be.

I spent the next 3 hours in bed, wrapped up in the security of my quilt and wishing that I never had to leave my bed again and wondering when this nightmare is ever going to end?

The usual tears followed once I felt slightly better. (It's been a little while now, since I felt ths bad and felt so frightened.) Sometimes, I don't think that I'm ever going to get any better and the longer it goes on, the harder it is dealing with it.

Still, tomorrow is another day and just hope it's going to be better.

Off to bed now and just hope that I get a decent night's sleep.

Karen x

I've read a few articles on the "Mozart Experience" re: the effect of certain pieces of Mozart's music on the brain. When I'm stressed and need to unwind I listen to a CD called "Mozart For Relaxation" - it certainly seems to have the right effect!