Karen

Hi Melisa and welcome! It must be very hard to be such a long way from your Mother at a time like this. Did your Mum have any other physical problems after the SAH? We all vary here with our recovery and some of us have some physical problems that hinder recovery. Generally, the key to recovery is getting enough rest, not to fight the fatigue and listen to what your body tells you. If you overdo things, you normally find that your brain will try to slow you back down and the headaches kick in. I suppose that the brain is telling you that it needs to heal. After a time, you get used to the warning signs that you're doing too much and you do slow yourself down. The first three months for me, were the worst ones for my headaches ..... the fatigue was awful .... having a bath would zap most of my energy .... my recovery has been slow and recovery rate is an individual thing really and everybody varies. I hope that any of the other members who read this, will also post a response to you. http://www.srht.nhs.uk/patient--visitor ... emorrhage/ The above site is a good one to visit and gives you good basic information as what to expect. Sometimes, the information on SAH recovery can seem a little vague, but I suppose it's because recovery is individual and it also depends on how much damage has been done to the brain, where you've had the bleed in the case of an aneurysm etc. It does look as though the first month is the most critical....but hopefully she's taking it easy anyway and she will probably find that her energy levels are very low and will need to rest up. Hope this helps a little.... Take care Love Karen x

Hi Keith, Just had a look at the preview and will watch the whole thing tomorrow, when the house is quiet. Thanks for letting us know. Hope you've had a good weekend, Karen x

Hi Louise, We live at opposite ends of the country then! I have never been to Scotland, but my Husbands been quite a few times, mainly with work and he always says how lovely it is. I can't stand crowds or noise, I think that I've improved a little bit on that front, but not enough......my brain seems to get a bit confused with it all. Like you, I'm very light sensitive, I was before the bleed, but it's definetly worse since..... especially in brightly lit shops....always keep my sunglasses perched on top of my head, just in case. Well, it's good to know how much you've improved and very encouraging for me to hear it from somebody else that's gone through it. My dizziness I think has got worse and until I get my appointment through for rehab, then I feel stuck in a rut.....I might start patching over my bad eye again, just to see if it makes any difference when I'm out......even though I get stared at!! My daughter has just picked up another bug ... she was only off school a couple of days last week, with a temperature and sore throat.....just hope that I don't get it! Anyway, must go and do some work ..... emptying the dishwasher, they are great machines, but nobody here ever wants to fill it or empty it out.... so I'm not sure whether I gain any extra time by having one!! Take care, Love Karen x

Hi Therese, Nice to hear from you! It must be really worrying for you and I can understand how frightened you must feel, having the aneurysms re-coiled or clipped. Are you having an angio or MRA when you go for your check on Oct 19th? It's one of my biggest worries as I know that my coiling has compacted and I had a bit of a scare last August. Like you, I think that my eyesight after the SAH, has been one of the major hurdles to learn to live with .... I was fortunate enough for the sight in my right eye to gradually repair ...... but it's still out of line with the good eye and I get a lot of eye strain and pain through the eye, especially when I'm tired. When it gets bad I tend to patch it off as it drives me nuts!! It's probably a good thing that you are working ... less time to think about stuff .... what sort of work do you do? Sometimes I wish that I was in the position to get a part time job, as you do have too much time to sit and dwell on stuff....it doesn't help. Running this site keeps me pretty busy though and I have my hobbies to keep me going. Is this the first support group that you've joined, since your SAH? It's horrible though isn't it, when you feel lonely and frightened ..... I've suffered from quite bad anxiety attacks ... probably 50% due to the physical stuff that I'm stuck with and the other 50% due to fear and lack of confidence. I still only take one day at a time. Anyway, any time you want to talk.... Hope that the day is kind to you, Lots of Love Karen x

Hi Louise, Hope that your weekend is going okay ...... Have you been up to much? Well, for me I've spent most of today catching up with the washing and ironing that I didn't do yesterday .... so I'm hoping that I can leave the chores behind tomorrow and do something nice! My Husband, Eric took me out for a nice car ride through the countryside this afternoon ... we live near Wimborne in Dorset, so it doesn't take too long to get out into the sticks. Been too tired today to do much else, but quite enjoy having a ride out, just to get out of the house! I'm quite lucky to have a few hobbies .... so I can normally find something to do ... at the minute I'm concentrating on making some decorations for Christmas, which involve a bit of sewing and some beading. When I have more energy, I love my garden ... but I'm only a fair weather gardener! We've grown lots of veggies and salad this year, some have been quite successful, others have been a disaster, but I've quite enjoyed it. Our garden is only tiny, but it's amazing what we've managed to cram in. After six years, how much improvement do you think that you've made? I'm at 14 months post SAH ..... my recovery has been slow and the improvement has happened, but it's been so slow that I've hardly noticed the changes. I'm still plagued by dizziness, which is hopefully going to be helped when my rehab appointment comes through. The fatigue has improved quite a bit, but it's still a big part of my week. My eyesight is still dodgy as I had a 3rd nerve palsy, therefore my bad eye doesn't quite line up with the good one. I just wonder how much more recovery I can expect at this stage or whether you've found that you still made recovery after this point? Anyway, must go .... hope all is well with you, Take care, Love Karen x

Hi Louise, No, life doesn't begin at 40 does it? ..... I know quite a few people who have had health problems around this age. I'm a bit tired today ..... hence the lack of motivation ..... just been doing some work on this site. Like yourself, I need the sugar boost sometimes when I have a drink, it seems to help the energy levels. I just take each day at a time .. like you say, tomorrow is another day and hopefully, a better one! Anyway, going now to prepare something "Gourmet" for dinner (yeah, ha ha!!) All I feel like doing is beans on toast ! Nice to talk to you! Love Karen x

Hi Sami, Good luck with the new project, it will certainly keep your mind busy, which is great.......better than doing the accounts eh! That's what I miss not working anymore. (No, not the accounts, keeping the mind busy!) I love Cornwall....very pretty, we took a holiday nr. Penzance just before I was ill in 2005. Enjoy your evening, I would imagine that you will miss your friend though. Yep, I am taking it easy ..... I'm just find it all a bit boring today and it's one of those days where I just can't settle......still I know that I can feel a whole lot worse than this. Anyway, just about to take a look at some article writing from Andy H .... he's a good writer .... wish I was as eloquent as he is! Take care, enjoy your rest, Lots of Love K x

Hi All, Andy, that's really good news about Heather.....mind you, I can well imagine that you couldn't concentrate on anything whilst she made the journey.......I'm really pleased for her! My 16 yr old daughter had a lesson on sexual health at school ...... they were apparently shown photos of certain diseases ...... she was horrified at what she saw .... let's just hope that it's a valuable lesson, but not sure whether I would want to see a full colour close up either!! My, have things changed since I went to school! Sami, yesterday you said that you had sent me a private message.....but didn't receive anything, unless you changed your mind etc but thought that I would let you know. How are you this morning? Well, I've just got back from doing a basketful of shopping......nothing exciting, but I'm plagued with the dizzy spells today, so have spent much of the morning sitting on my bum. It makes me feel irritable when I get it bad.....but hey.....I shall go and find something to kick! Eric has got back from Gibraltar......therefore washing/ironing is on the agenda once I get going. Can't wait!! Great to see another new face on the MB.....Louise......I hope Louise, that if you read this that you will join us! The site seems to be taking off quite well now, which has made me feel pretty relieved. We've added the site to Wikipedia and we're getting quite a few people coming from that source as well as Salford/Soton NHS. Anyway, going now....can't keep skiving! Will be back later. Take care all, Lots of Love K x

Thanks Andy......I've received them so will have a look later today.....love the photo!!........I will be back in my capacity of "critic" later! Love K x

Welcome Louise! It's really good to hear from you and thanks for giving us some of your background. It's really interesting to hear from people that had their bleed a few years back and how they've been dealing with life. You talk all you like.....you certainly won't bore us!!! It's great to hear that you've discovered the computer and it's something that you enjoy. Yep, it's a great way to keep in contact with people and I couldn't be without one now. I certainly wouldn't have been able to have set up this site and I've met some really lovely people.....so it's been well worth doing and helpful in my own recovery. Do you have family? Hope that I don't come across as too nosy, but do you mind if I ask how old you are? It's just easier to talk to people if you know a little bit more about them. Like you, I find that caffeine really affects my head.....so I only drink de-caff now.......but it doesn't taste half as good, so I only have one cup a day. Normally I just drink water and top up with the odd sports drink. But, yes, really miss my coffee especially first thing in the morning. Anyway, must go and some housework.....I'm a lazy so and so today....can't get motivated! Hope that you will write some more and join in with some of the other discussion......it's always great to have an "old hand" on the MB....I would imagine that you would have plenty of advice to give! Good to meet you........write all you like!!! Love Karen x

Andy, that's brill! I'm sure that it will be great.......but okay, I will let you know whether I like it or not.......but I'm sure I will! Hope that everything is still on the up and Heather's keeping well ... let me know how you get on about her job. You take care good care, Love K x

Hi to all, Keith, it's good to hear from you and you sound as the you're doing well. Don't rush back to work too quickly...like you say you have good and bad days...on the good ones you will probably wonder why you're sitting at home, but on the bad ones you will be grateful not to have the pressure of having to go into work. I went back to work way too early....felt under pressure to return and I wasn't ready.....I haven't worked since ..... I obviously didn't take much notice of what the Docs told me at the time about a long recovery period. But, I suppose that things sometimes happen for a reason and if I had been working, then I wouldn't have set up this site and met you lovely people!! So you're the expert on coiling to come to! If you found out any useful info at the meeting, do you fancy writing about it? I would certainly be interested in hearing about it. It must have been nice to have met David and Debbie .... I haven't heard anything from David for a while, so hope that he's okay? Sami, hope all is well with you.....I'll be back later. Love to you all, K x

Hi Sami, Hope that you have a good evening and a decent sleep! Yes, I know what you mean about "is it likely to happen again" .... I suppose it's a hard one to answer .... but it's an important question for those of us who have suffered this... It's okay for the medics to say, "well I have more chance of having one then you" etc.... but unfortunately, with what I've read, I know that it can happen again. I also happen to know that my coiling has compacted...as I understand, it leaves a neck. Therefore, my coiling isn't 100% successful ... from the papers that I've read you need total occlusion to have a good result. I'm able to live with that fact ..... but sometimes, I wish that I could have had it clipped. I know that there are bigger risks when operating during clipping ..... but I often wonder whether coiling is the cheaper alternative. From what I can see, there's still not enough research re: clipping V coiling. Perhaps, you can only draw on your own conclusions ..... but I'm certainly going to ask a few more questions on my next trip to the hospital. When I had my angio follow up at Southampton, I received a letter telling me that my coiling was "satisfactory".......at that point, I knew that it hadn't been totally successful....that's what my gut insitinct told me.....it turned out to be right and that the coils had compacted, but they were okay and it was "acceptable." I know that in the real world there are no guarantees in life....but it's damned hard living with this and you could really do with somebody telling you that "everything is going to be alright". It's very hard at the time to ask the right questions.....I'm hoping that next time I see them....that I will. Lots of love, K x

Hiya, I'm a nibbler too.....but only in private! (Especially with a Mars Bar Ice Cream) Like yourself, I can't plan a holiday....but I can understand how hard it must be for you, after having the bleed and being away from home. I certainly still don't want to fly....I've always suffered with ear ache and popping when I've flown, but if I had it now on a plane I think that I would have an attack of the vapours!! It's bad enough with the pressure in the car. Did you get the pressure feeling in your ears at the time of the SAH? Anyway, if I go anywhere next year ..... it's going to be in the UK and booked last minute ..... preferably a 5 Star Hotel with a Spa!! I've been in contact with Julie Cancea (also a SAH survivor) from the Different Strokes website....she helps out the charity a couple of days a week and was commenting on how we always refer to "my SAH" when we speak about it...and said it's funny how we "own" our SAH. Julie has her story on the Different Strokes site and it's inspiring....if you get a chance then have a read. She seems like a very nice lady. Glad it's just not me that talks to their brain! Like you, I felt as though having a shout back made me feel more in control, instead of being controlled. Sometimes, think that somebody is going to lock me up and throw away the key! It's a good idea to try and divert yourself on Saturday .... being on your own, does get better with time and I still get anxious even now when I know that Eric has to go away. I used to have tears when he went off and felt like a child of about six years of age.....that doesn't happen so much now, only on odd occasions if I'm having some physical symptoms. Once he's gone, I'm fine, it's just the thought of it. I know that the chances of anything happening are slim.....so now I try my best not to think about it. Hopefully, time is still a great healer..............it just feels as though time sometimes, is taking too long!! Anyway, I think that you are doing marvellously, so just be kind to yourself! Must go, as about to prepare dinner ..... I made a chicken stir fry with a black bean sauce last night ...... it was horrid.......don't quite know what I did with it, but obviously massacred something along the way. (Mind you, the dog seemed to enjoy it...but then again he eats horse poo...so no compliments there!) So, making it up to my kids this evening with something that's hopefully half decent and edible! You take care, Lots of Love K x

Hi Sami, Good to hear that your counselling session was a positive experience ..... I think that there's probably a lot of baggage that people have in their past that affects them after a SAH ... certainly having a life/death experience makes you feel very vulnerable. A lot of people I have spoken to, no longer plan things and tend to live for the day. I still feel as though I can't plan too far ahead, I'm not sure whether that's ever going to change now, but it seems to be a common reaction after a SAH. I can't seem to be able to look forward and see tomorrow, I'm only able to handle one day at a time. I used to be so organised ..... always making plans on how I was going to spend my time and my days off from work....always something on the go or people to see. However, by taking it day to day, it has cut down on the stress factor, so may be it's the brains crafty way of making you slow down! Join the club! re: bottom of the pile ...... like you say though, good news in one sense that he thinks that you are doing okay. I actually think that the anxiety factor has been the worse thing to handle, so if you are able to deal with that, then you will be half way there. I tend to go through patches of it, depending normally on my physical state. I still get really anxious when I have the weird pains shooting through my head and last week I found myself shouting out aloud, something like "well come on then, do your worst etc......" (language was a bit more colourful than that) It did have the desired effect of getting rid of the adrenalin.....I'm not quite sure what came over me, at least I was at home with nobody around, otherwise they would have thought that I was going nuts, challenging my head to explode!! May be I need the therapy!!! Anyway, read too much again last night...couldn't put my book down and then couldn't get off to sleep.....I never learn.......still hopefully I will learn some moderation one day! Hope your day is a good one, Love Karen x PS: Do you nibble the chocolate off your bounty first ?

Good morning everybody! Just wondering how everybody is doing especially the newer members of the group who've been pretty quiet? Hope all is well with you and let us know how you're getting on with life. Sami, hope that the counselling went well yesterday and I will come back to the board a bit later. Take care, Karen x

Hi Andy. It's good to hear from you! Glad to hear that the heads are a little better. Yep, 94 is a really good age, especially if you've been lucky with your health ..... It's over twice my own age ..... which seems extraordinary really ..... don't think that I will make that many numbers somehow!! Hope that your Mum is okay though....she must miss him. Anyway, not much news, which is good in one sense. Keep well and take care, Love K x

Hi Andy, It's really so good to hear from you ..... I was getting worried!! I'm really glad to hear your good news about Heather ...... but so sorry to hear about her job ..... they've obviously given it to somebody else? I used to work in Personnel or the trendy name HR ...... I can't believe that a reputable employer would do that ...... it's actually extremely hard to fire somebody and you have to stick to the rule book .... no deviations .. or as an Employer you leave yourself wide open to an Employment Tribunal. I left that employment, due to stress after my warning bleed.....I was working for a chain of hotels and the staff were very transient .... lots of issues, including racial discrimination etc. but the Company were very good and did everything by the book and looked after their staff. I really can't believe that there are still so many bad Employers ..... did Heather work for a large Company or a small one? I wish you luck Andy, as I would imagine that Heather has a very good case. I still love the way that you write ....... perhaps you should turn your hand to it one day. Anyway, wishing you and Heather the very best ....... let us know how you get on with it all ...... You always sound so calm ...... not sure that I would be .. anyway, you take good care of yourself, Love Karen x

Hi Sami, Good luck with the counselling and don't hold back with your feelings or thoughts, they're better out than in. Yes, it's probably wise to chase up the hospital if you haven't received an appointment, they're not infallible and at least it gives you peace of mind. I think that I might wear a bandage around my head as well.....just for the sheer hell of it! The other Saturday, when I was in the supermarket with Eric ... holding onto the trolley for support and trying to avoid the huge amount of people coming at me as though there was a food famine.. this guy just rammed his trolley hard into my legs .... it ****** well hurt ... never apologised or anything ...... I felt really angry and Eric was livid.....I nearly turned around and gave him my life story! That's when I could have done with the bandage ..... some people are just so ignorant and I think that I'm too polite, always getting out of their way, when they don't make any allowances. Just finished a bacon sarnie ..... it was lovely ..... something I don't do very often, as I would be the size of a house! It's a shame that you don't feel quite so upbeat today .... I find that too, if I get a bit stressed out, it quickly seems to lower my mood. I think that's part and parcel of the recovery....the brain just doesn't seem to want to cope with the stress, I also find that the fatigue can kick back in, almost like a warning sign telling you to slow it all back down again. Not sure if that makes sense to you! Anyway, must go....glad you got paid.....now you can spend!!! Take care, Love K x

Morning Sami, Yes, I think that's the trouble with brain injury...... nobody can see it ...... unless you're walking about with stitches and bandages on your head. It's hidden from view and you look fine. I was a bit dissappointed that it's going to take some time to get an appointment, but they didn't tell me that, when I saw the Consultant. I suppose they have to prioritise people and I'm probably way down the list on that one. I do understand though, that there are obviously people that need the treatment more urgently than I do. Just wish that the people that run the NHS, fund it etc could have a taster of my life, spend a day in my body and then see if they could function normally. That's my moan over with for the day! I've had an e-mail from Andy P ....... I don't think that he's still feeling particularly well, but he sounded a little better ...... he's been struggling with sleeping by the sounds of it and getting tired spells at lunchtime. If I remember rightly, today is the funeral of the chap that was living with his Mum. So Andy, if you read this, I shall be thinking of you. I also haven't heard anything from Andy Howland for quite a while, so just hoping that all is okay with him....I always worry when I don't hear from people for a bit. I think that my anxiety stems back from the old discussion site that we used and there was a lovely guy called Wayne who used to post regularly.......then suddenly nothing, until his wife contacted us to say that he had passed away. I was so upset......he was a lovely character, always happy and always put a smile on my face. You must get really worried about Paul, especially working those sorts of hours.....it's definetly not any good for you......but I suppose when you run your own business and you have deadlines to meet, then you sometimes don't get much choice in the matter. I also had quite a good night...........but read too much of my book, as it was getting good......always fatal, as I end up going to sleep too late! but I slept well......just a bit late getting up this morning. Anyway, must go and do some work and will speak to you later, Love K x

Hi David, Hope that you are feeling well. Just wanted to ask you how your case is going with the employment tribunal? Hope that you're managing not to get too stressed out and just to let you know that I'm thinking about you. Take care, Karen x

Hiya, forgot to mention earlier that I chased up my hospital appointment for Physio at the Brain Injury Centre........apparently they still haven't got a "slot" for me.....but they're hoping to be in contact with me in the next couple of weeks. I think that they are going to try to re-train my brain to accept the dizziness...... I'm looking forward to getting started as I really do want to stop feeling so whoozy and out of control all of the time ...... it's debilitating. Love to all, K x

Hi Sami, Well my excitement for the day has now passed and all of the shopping is put away...........mind you, the delivery boy was very cute!! Who says that staying at home is boring!! I'm sounding really desperate now! I can just about remember deadlines etc....... and yep, it used to be frantic......that's why all of us newspaper people always used to end up down the pub! I certainly couldn't or wouldn't want to deal with it now! So, you take care of yourself and I shall look out for some of your work. I love Boots Botanic moisturiser!! Yes, it can be hard being by yourself....I still can't get used to Eric going away.....he's always gone away through work......but at the back of my mind, there's always the "what if" question that rears its ugly head! .... it hasn't helped having to go into hospital for a 2nd time...but my confidence is coming back again.... I still often wonder where the "old Karen" has dissappeared to....but just hope that she comes back one day. Must go.......everybody's starving here.... You take care and enjoy the sole use of the remote! Love K x

Hi Sami, When you mentioned proof reading....it reminded me of the time when I worked at the Bournemouth Evening Echo.......working in advertising and accounts....proof reading, one of the many tasks, basically Jack of all trades......many moons ago...when the likes of Anne Diamond and Bill Bryson worked there also in the 70's. (The 70's make me feel so old!!) Paul's line of work sounds really interesting..........my daughter is taking Graphics as one of her GCSE's..... she's good at design, but finds it a pretty tough subject. Your work sounds very similar to what I've done...Admin....Jack of All Trades!!......but people like us are normally very versatile, aren't we!!! Anyway, glad that you've got the accounts done..........being self employed myself, I know what it's like waiting to be paid and having to chase people up! Must go, the shopping has finally arrived and now I have to put it all away...the excitement is too much!! Speak to you soon, Love K x

Hi Annie, Welcome back! Hope that you enjoyed your holiday...it sounded fun! I can remember going camping in a tent and then coming back home and the house looked huge. (Even though our house is a bit like the size of a dolls house!) How did you cope with the snoring when your were in the RV? Are you like Sami and myself who wear ear plugs........ I think that when my eldest leaves home, I shall be in that bedroom like a shot ..... I quite fancy my own bedroom again ..... a pretty, feminine room with just my "bits and pieces" in it!! Re: Anti deps - I really don't know much at all about them. I can understand why you are worried about coming off them altogether. It must be very scary looking back as to how you were, before you took them. I would imagine that you would very slowly decrease the dosage, a little bit like the Anti Sezuire meds that I was on. I too, felt really scared, but I decreased extremely slowly and took it over many more months than you would normally have to. I think that you have to get used to some of the withdrawal effects as well and it took me about a month to decrease each 25mg and about 8 months to finally stop. Every time I decreased, it seemed to take about a week to have an effect and then I would have a few days of withdrawal symptoms, normally tiredness...but nothing too awful. I did however, have a couple of months where I stayed on the same dosage, as I started to worry about the seizures coming back and didn't feel confident about reducing at that point. I then stayed on the lowest dose possible for another couple of months, just to build up my confidence that nothing awful was going to happen to me. Eventually, I managed to stop taking them....but it also took me a fair few months to feel confident that all was going to be okay. Now, I barely think about having seizures, but it took time. If you go ahead with it Annie, then take it real slow and do it at your own pace. It takes time to re-build confidence. Anyway, lovely to have you back...... Take care, Love Karen x