Tina Posted April 29, 2008 Share Posted April 29, 2008 Hi Louise You are a great inspiration! I know it is silly getting frustrated, I am realising now that it does not help. Like you I am a fighter and determind to get my life back on track. And as you say we are here and survived! One step at a time Take care Lots of love Tinax Quote Link to comment Share on other sites More sharing options...
Louise Posted May 1, 2008 Share Posted May 1, 2008 Tina, its not silly at all getting frustrated, I still get frustrated from time to time, guess its just a case of letting the healing get on with the job. Take care Louise.xx Quote Link to comment Share on other sites More sharing options...
Tina Posted May 1, 2008 Share Posted May 1, 2008 Hi Louise Thank you, and here is to let the healing get on with the job! Your a star! Take care Love Tinax Quote Link to comment Share on other sites More sharing options...
Louise Posted May 1, 2008 Share Posted May 1, 2008 No dont see myself as a star just having had 8years experience (& still learning even now) Louise.xx Quote Link to comment Share on other sites More sharing options...
Anne Fleming Posted May 1, 2008 Share Posted May 1, 2008 I'm about 5 months post-SAH. I certainly was euphoric when I came out of the hospital, just at the thought of having survived. Although my SAH was quite a big bleed, I had 2 vasospasms after the coiling which I think did more harm than my original SAH, one of them causing me to lose hearing in one ear and some left side awareness. My aftercare has been good in that I have an experienced OT and neuropsychologist at the rehab hospital. I've done a lot of tests (still awaiting results) so at least will have a clear picture of my "deficits" and hopefully they will suggest ways around them. Staff involved in my rehab are very careful not to give me false hope and one nurse said that as my bleed quite a big one, it would take at least one year to two, for me to make a recovery though they did not know how far that recovery would take me. I think it's all this uncertainty which makes SAH such a difficult illness to cope with. I find it very difficult to know whether ongoing symptoms such as fatigue and "fogginess" are as a result of the SAH or partly due to anxiety about the whole thing as it's knocked my confidence so much. I'm attempting to go back to work in a few weeks time on a very part-time basis. I was worried about whether I would be capable to do this until the other day when I heard that I will probably be made redundant anyway due to lack of funding. Now I'm so sad that I will probably lose my job as I'd been doing it for 11 years and really loved it and it's not an area of work where there are many openings. I'd almost like to have a holiday from myself for about 6 months and come back and hope to find myself in better shape. I think Karen re the Wikipedia, BTG is a really top notch site and you've done a great job starting it up and putting it together and I think people will find it without Wikipedia. This person at Wikipedia sounds too obtuse to get through to. Anne Quote Link to comment Share on other sites More sharing options...
Louise Posted May 1, 2008 Share Posted May 1, 2008 Hi Anne One of your tests did you make a coat hanger? I couldn’t do it to me it looked nothing like a coat hanger…. I think your doing great if you’d thought of going back so quickly after such a big SAH, but then my OT tried to get me back too quick I think they have a quota to fill however I got made redundant as well….. so I was never able to find out if I could do it. Then I went back in with Meningitis that was the thing that got me. The fatigue & fogginess are likely the SAH my confidence took a beating too but really you very early days although you probably dont think so. Take care Louise.xx Quote Link to comment Share on other sites More sharing options...
Karen Posted May 1, 2008 Author Share Posted May 1, 2008 Hi Anne / Louise, Louise - Yes, you're right with what you say ...... and for many of us, the SAH is something that we don't get over quickly ..... for me, it's an ongoing process and recovery hasn't been fast, more snail like!......many of us are led to believe, normality will happen after 3 - 6 months. It's so interesting to see the progress of individual members on this website and I think that you've done brilliantly from when I first met you on these MB's..... Anne, all I can say, is that when one door closes, another one opens ...... If I'd been able to return to work, then we wouldn't be having this conversation now ..... I would not have been able to run this website, I just wouldn't have had the time to do so. I still haven't ruled out a return to work, but it might just take a different form. Yes, money can be tight some months and it's not ideal, but rather than returning to work and failing and losing even more confidence, then at this moment I'm quite happy .... I think that only you know what you would be capable of at this minute and you have to rely on your gut instinct, it doesn't mean to say that you'll never return to your old line of work, but it may even open up new doors for you ..... good luck xx I would just like to mention, that you guy's in Scotland seem to get a lot better aftercare post SAH with O/T / rehab etc ... down south, it's useless..... Quote Link to comment Share on other sites More sharing options...
Louise Posted May 1, 2008 Share Posted May 1, 2008 Yes I've noticed that with the posts too Karen..... When Stuart & Elma were here, they were shocked when I called the doctor out at 10pm for Ronnie they would have had to pay & pay too for the ambulance, so maybe the NHS isnt that bad Hey I got a refund in my perscription charge too in Scotland they're scrapping charges but will that mean problems who knows hugs, Louise.xx Quote Link to comment Share on other sites More sharing options...
Karen Posted May 1, 2008 Author Share Posted May 1, 2008 Hi Louise, I think that you've done really well.....so, all credit to you.....I've always enjoyed talking to you.... This is a general comment.... Well, it kind of gets my goat, that the prescription charges are different throughout the UK.....even though we all pay the same taxes and NI .......I believe that the Welsh get it for free and now Scotland is also getting it for free......The English have to pay the full monty...I don't mean to be controversial but is it fair and who's subsidising the freebies....as I know rehab and O/T is also rubbish down south.... should I move up North, it's kind of getting that way down here? .... I was born and bred down the south of England and my family have been farmers since the year dot.... it doesn't mean to say that wages are any better than anywhere else, as they aren't and house prices are b****y dear down here..... sometimes, I wish that I had emigrated when the kids were young, as it's a struggle and I find that we're being penalised more and more. It's bad enough suffering a SAH, but being kicked in the teeth will full NHS prescription charges, adds fuel to my fire.... Quote Link to comment Share on other sites More sharing options...
bogbrush Posted May 1, 2008 Share Posted May 1, 2008 Prescription charges make me mad too. If I had to pay full price for my prescriptions, it would cost me £28.40 every 4 weeks. That's nearly £370 per year!!!!! As it is, I have a pre-payment card which means It costs me £98 per year. That's quite a saving, but why should we have to pay it in England when no-one else does? Regards Keith Quote Link to comment Share on other sites More sharing options...
Karen Posted May 1, 2008 Author Share Posted May 1, 2008 Hi Keith, It does make my blood boil.....I don't claim for anything and I don't see why living in England should alter what the rest of the UK has to pay or doesn't have to pay ........... and it's not fair..... I shall look forward to everybody's comments.... We don't earn a "premium" for living down here, but have to put up with big mortgages and none of the benefits...... I'm getting a bit fed up with it, to say the least ..... I live in a very modest 70's built bungalow, 3 beds, but small....v.small....... with little land ... as some of you will see at the BBQ....... When it comes down to healthcare....and paying for prescriptions or getting O/T and Rehab.... it shouldn't be down to which part of the UK that you live in... Quote Link to comment Share on other sites More sharing options...
Louise Posted May 2, 2008 Share Posted May 2, 2008 Only since Scotland got their own parliment though.... That's what I'd been paying Keith £98 for the year, & yes I have to pay full whack for my perscription....its not being totally fazed out till 2011 I think it is? The sodium valporate (seizure tablets) didnt have to pay because you need them. However BP tablets you have to pay for that seems weird to me Karen, if you'd emegrated you'd had to pay like I said Stuart has to pay for a Doc to come out in the evening, they are in an ambulance fund which means that if there's ever any problem they will get one to come once they quote the number on the card (I think they said) but if your in the position to need an ambulance who could be a***d to remember 'oh here's my card with all my details' And I noticed that some people in USA have to find their own nuro surgeon & team....again in a situation like that (well with mine) time was a major factor..... Ok will stop there rambeling hugs Louise.xx Quote Link to comment Share on other sites More sharing options...
Anne Fleming Posted May 2, 2008 Share Posted May 2, 2008 Hi Louise/Karen Louise- yes I did have to make the coat hanger, it's one of the tests I did worse on as it took me ages to figure it out. I also had to do some memory tests and I've tried one of them on friends (no SAH) and they were scoring on average one out of eight and then beginning to worry about their memories (this was the test where she read 8 pairs of non related words out and then said one of the words and you had to say its partner) . It's interesting what you say about OTs and quotas, I hadn't imagined that they would have to try to get a certain number of people back to work, is this really the case? Also it seems that a few people take meningitis post SAH and I was wondering if there is a connection? Karen - I would say, having read about other people's experiences post-SAH on BTG, that my aftercare has been good and perhaps it is generally better in Scotland or certainly if you live in/near Edinburgh, I can't speak about other parts of Scotland. And of course prescription charges are being phased out here & council tax at standstill this year . But I have a bit of a sinking feeling about the long term repercussions of all these savings, as it could end up that it affects the level of services available to people but who knows? Anne x Quote Link to comment Share on other sites More sharing options...
Louise Posted May 2, 2008 Share Posted May 2, 2008 Thats what I thought, while dont get me wrong no perscription charges & council tax, it makes you wonder if things will be as good I couldnt figure the coat hanger out so dont worry. No didnt get that, but one I do remember was name 15 things starting with 'A' in 1min, not a place name not a persons name, GO then he kept snapping his fingers (I felt like hitting the guy) I got 3. But as Ronnie says its not a test like school................I tried it on friends they couldnt do it either. I dont know if they have quotas, someone told me they did Louise.xx Quote Link to comment Share on other sites More sharing options...
Karen Posted May 2, 2008 Author Share Posted May 2, 2008 Hi Anne, From what I can see from the website, it sounds as though aftercare is definetly better up in Scotland ..... I think that at the minute, it seems like a lot of us in England are getting a bit of a raw deal, but still paying the same taxes etc ..... I'm afraid that it does get my goat and if we all belong to Great Britain or the United Kingdom, then our treatment should be the same.....it's not fair, unless anybody can tell me different and at the end of the day, somebody has to pay for those that don't have to pay for prescriptions and that's a fact....the money has to be found from somewhere ..... Council tax is a little different as services are locally funded... Anyway, rant over ..... Quote Link to comment Share on other sites More sharing options...
Slim Posted May 2, 2008 Share Posted May 2, 2008 Hi Guys, Its Bizzare I've been ranting to my pal how services are up here and better down there! I liked the Wessex (I think) doing the Dvd and the Support Groups. Getting to see Mri Scan's etc although part isn't aftercare. For me Up here under Grampian This has been a fight the entire way. I was offered Horizons and excellent rehab services, but didn't really meet my needs, I was still having balance issues and it was only when I went to a Bupa Phyiso and they were able to help.(via Donald's work) I had obviously been addicted to Codiene as I was having the rebound headaches this never picked up. Until I researched it. Menigititis again has been likely going on for along time I'd been having loads of relapses apparently its quite common for us to pick up, Wouldn't it have been lovely if someone had the forsight to monitor our progress. Sorry for the rant, I feel the only relevant aftercare I got was via this website! If it wasn't for this I genuinely don't know where I'd be now. One Health Prof I will rant about was a Neuropsychologist. She was great, really empowered to build my confidence and get back out there. Actually I'll include her in the Credits. A crucial part in my recovery. It is rough that there still is this postcode lottery, But I still think generally there is very little understood about how we recover after a SAH. The Dr Death from Edinburgh seemed to be genuinely shocked by how well I'd recovered from when he saw me in Edinburgh. Prescription Charges are good though! Sorry Donald needing to get on Comp so haven't had a chance to re read my rant. Take Care and Keep Asking Aine Quote Link to comment Share on other sites More sharing options...
Karen Posted May 3, 2008 Author Share Posted May 3, 2008 Hi Aine, I think that we all deserve to have a decent level of aftercare and I still get so frustrated when I see new members struggling. I know that like myself, Elva who runs the support group at QMC feels similarly passionate and that we should all be entitled to some decent standard of aftercare and logistics shouldn't come into it...... Elva helps mentor people in her support group and has also volunteered for some mentoring on this website. Oh well, I can imagine that I will continue to feel frustration, unless SAH recovery is suddenly higher up on the medics agenda..... Quote Link to comment Share on other sites More sharing options...
Shanti Posted May 8, 2008 Share Posted May 8, 2008 Hi everyone As I'm now 61 I get free prescriptions, but I can't claim SSP or disability so its swings and roundabouts. As I'm not on any drugs anyway I'm not getting any benefit. I haven't had any aftercare offered, except in the early days rehab nurses came to see me and determined I was coping okay without additional care. Physically I've been very lucky and apart from the dreaded bad heads and right eye nerve pain the odd day, I've got better month by month. Seem to have plateau'd now though at a level of strength and capability physically, emotionally and mentally. Given the life threatening events of Nov last year, I do count myself one of the lucky ones. The best aftercare I've had is on this site: I tune in every day and just reading everyone's ups and downs, progresses and backwhatsits (can't think what the word is: doh) helps me feel supported and accompanied on what was at first a very scary journey. Even getting rattled by Aine's disappearance off the website and subsequent news that she'd had meningitis has a positive, 'cos that is now noted as a possibility if I developed certain symptoms. No-one at the hospital told me to look out for certain symptoms or that I could get meninigitis. Oh, just meant to add: if anyone else suddenly disappears off here for a week or so, please ask your partner to update us, 'cos we were all very worried about Aine the other week. The best pain remedy that works for me is: 1 x Neurofen + 1 x paracetamol Love and hugs all round Lesley xxx Quote Link to comment Share on other sites More sharing options...
donna79 Posted May 31, 2008 Share Posted May 31, 2008 HOW TRUE !!! I had my bleed a month ago and to be honest i feel a mess. I am sooooo grateful for what the QMC have done for me but the only aftercare I have had is a leaflet with a list of numbers... Last night i was panicing after feeling faint and I didnt know where to turn.... Luckly one of the informatin sites was this one and even though it is my first day on here i feel like i have somewhere to go x Quote Link to comment Share on other sites More sharing options...
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