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andyp

A Dented Image-Meeting In London

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This is a quick message to all those who post on this site and were at the meeting in Lambeth a few weeks ago..It was great to meet you guys and interesting to see that we had a lot in common in our experience of SAH!

I thought that Alison had done a brilliant job of pulling together around 30 different viewpoints and sensitively compiling the various chapters.

I am sure that the book will greatly help those who are struggling out there for information.

I met up with several contributors and their other halves including Dave, Wendy and Rosie.

If you post to this site please do reply and keep in touch!

Best wishes

Andy P

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It was so good to meet up with fellow survivors and I wished after that I'd spoken to more of you. Alison's book is really good, especially as she included some of the things I said to my family after my SAH in 2004 which they interpreted as signs of mental instability. Sadly my sister has stuck to this stance this last 4 years which has nearly driven me over the edge and I'm heartbroken. As I have to make sure my elderly mum gets the best care I can get given that my illness gave my sister and brother in law the opportunity to gain control of her finances the post SAH nightmare is never ending. I cannot believe what my family have done to me following the illness and have covered it up in shame but have made the decision to be more open as I need to do so for my own sanity. I have a good job nice home and friends but am divorced. I never expected to find myself in such a vulnerable predicament but then you never can tell.

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Hi Lauren and welcome to behindthegray.... :)

That's dreadful! ......and how sad.... as they say, "money is the root of all evil" and it's something that I've seen on two occasions within my own family .... mainly when relatives have passed away, but it's amazing what some folk will do..... at least you're able to live with yourself and have some dignity. Just so sorry that it seems as though you haven't had the support that you needed from close family ... but you can sleep soundly knowing that it isn't caused by you and that people around you, have taken advantage of your situation. All I can say, if that is the case, then you're better off without them and you don't need the hassle.

However, it's good to know that you can still find the positives with your situation, stay strong and keep focused on the good things ..... do whatever you can for your Mum and rest easy ....if you need to talk, then please feel free to talk away......there's always a friendly ear here :wink:

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Thank you for your support, it's so nice to read some kind words, I didn't realise what my family were like until this happened. Without good friends and especially the Brain and Spine Foundation, I would never have got through it. I still have PTSD issues because of some of the things that were said to me and having to be woken from my coma to be told "if you don't sign this you'll die" because I kept saying no leave me alone - as my sister said afterwards "I didn't want you to blame me if you came round disabled", then later after my second coiling just sending me a text in HDU and leaving me to get the train home from Kings ... and calling me mental when I've dared to express a view ... being told my only role in the family is to care for my elderly mum with mental health issues and dementia and that I don't have any right to be told what they're doing with her money has just finally got to me. Mum says I make too much fuss over what happened and should be over it and it means I must be a bit odd because of it, however no-one else I know seems to think there's anything wrong with me. Also in the middle of it all one of my best friends fell over hit her head on the station platform and died of a susequent brain haemorrhage - that put my situation into perspective but it has been a real struggle to deal with it emotionally on my own. I hate to bother other people and try not to get depressed but tend to bottle it all up as it's not fair on friends and of course they can't understand the struggle of getting over SAH as it's so invisible. So I've done a lot of isolating myself, although I'm lucky I play tennis and go running and can go out and meet people when I want to. I just feel very isolated with it all, even though I'm not physically. I've run 2 London marathons for the BSF and they put me on their leaflet and I'm going to the New Forest to do a half this weekend, so life isn't at all bad, but I was so sad about my divorce ten years ago and have spent much time looking after mum with her mental problems always in and out of hospital, and when it came for me to need something I discovered that they virtually all abandoned me. I won't neglect mum though as she can't help it and has to go along with them as she knows they'll do the same to her if she speaks out. Thanks for letting me get it off my chest. Lx

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Dear Lauren

I am sorry that you are having a hard time at the moment.

Ater reading your post i can relate to some of the problems. I need to come back and read some of the postings here because we all have problems are SAH no one really understands from those who have not had SAH.

We are here for you.

Where abouts in London are you?

Myra xx

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Hi Lauren

I am making steady progress, you can read my story on the homepage, Karen added that yesterday.

I live in Mill Hill, North London.

Myra xx

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Hi Myra

I have just read your story and you have had a rotten time of it. But you've got this far and in six months time you'll look back and see how much further you have come in that time. After the first six months me and my SAH buddy I found on Different Strokes found we were improving noticeably month on month. I found that it was much longer to recover than I had expected, and I went back to work after 10 weeks only to crash out with exhaustion and made myself a rod for my own back, but I wasn't getting paid and there wasn't anyone to support me. Have you read "Letter from Your Brain" on an American site, it really gives a good idea of how to deal with our brains and how we feel after SAH.

Take care and take as much time as you can. Hopefully your family will be able to grasp that it is very hard work getting better.

Lauren xxx

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Hi there welcome to btg if I were you I would ignore your family at the end of the day you have been through an awful lot hope it improves for you. Jess.xxx

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Hi there

Warm welcome to the site.....

Families what can I say I rarely see most of mine now since the SAH, money is the root of all evil, I know that one only too well

take care

Louise.xx

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Lauren, I think that you've done wonderfully well .....and I can see that from the emails that you've sent me.... hope that you're able to focus on yourself and if some of you're family don't appreciate you or what you've been through, then I'm sure that those that have been affected by a brain or spine injury will ..... as the money that you have raised through your marathon's for the Brain and Spine Foundation (which is a huge feat in itself!), will help those in need and there's no better thing that you can do... feel proud of yourself....hold your head up high and remember how well you've done .... Good on you and I'm sure that there will be many people on this message board that will say the same to you.... :)

Like a few of us on this message board, we've also taken part in Alison's book and I'm sure that this will help future SAH'ers ... I'm always humbled by the good nature of people that have recovered from this illness and have gone on to help others in the same and unfortunate predicament. It kind of restores your faith in human nature ....xx :)

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Thank you for your kind thoughts and words. I cannot believe the way things have turned out but all I can do now is make sure my mum is cared for properly and be careful not to get cross with her when she sides with my sister against me, as with her dementia and other mental health issues, she can't really help it and I can only think she's being hurt as much as I am by it all. Looks as if I might have a legal battle ahead of me, but I'm strong enough to go through with it now - wasn't really up to it before - so perhaps that's indicative of me getting stronger.

Take care all

Lauren

x

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Well Lauren, wishing you the very best of luck with everything ....

This is a photo of Lauren meeting Zara Phillips ....click on the photo to enlarge it and then wait a second or two....

zarawithlaurendownielk8.th.jpg

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Hi Lauren

Welcome to BTG what an inspiration you are despite the fact that you get little support from your family. You have done remarkably well.

Janet x

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Thanks for all your kind thoughts. It's turning into a real dilemma as to how I manage it. I spend so much time caring for my elderly mum and was in hospital with her half of yesterday and I get so upset that I was abandoned by my family and ostracised just when I needed them most. I feel that I'm just acting like a silly 5 year old who should get over it. That's what they all say according to mum and and my role in the family is just to run around after mum and not to make any fuss about being ostracised by them all. It makes me feel I must be a bad person and I've spent the last 3 Christmas's on my own and when I went away this Christmas mum got left on her own. I can't help but feel that there's another agenda but if I say as much it's more fodder to say I'm bitter and twisted - even though I do have evidence to the contrary. All attempts to approach my sister and discuss reasonably have met with her throwing fits and going back and telling my mother I upset her. It's a no win situation and I feel they're trying to annihilate me from the family. Well, they've just about done so already.

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hi lauren have sent a pm

i think this is because people who dont understand sah or any other illness tend to be very hurtfull because of ignorance and fear and their own mortality when i was in the ambulance service i saw a lot of this type of behaivior i tried and succeeded in getting them to either get into hospital and gather as many leaflets as they could and from ot dept at hospital and try to understand what people are going through after not only sah strokes and dementia and senility and many other woes dont let them get you down and try to get them informed i did have some success and have been thanked for it six months down the line when i have seen them going in and out of hospital lauren ask your sister infront of the family when you see her what is normal ? and what is she frightened of i promise you she will not know what to say and then you come out and say there is no normal because every one is different so there is no normal just compliance and i would be interested in what she says when you ask her what is she frightened of ? is it because she sees her possible future god forbid because dementia can be inherited stay strong sweetheart and dont let the buxxxgrs get you down i think we are all here so rant away ive done it and lovely karen hasnt black balled me yet

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Thanks Paul, kind words make me feel so much better than all the unkind ones from my family, like "get on with it" - especially having looked after mum with her mental health problems since I was about 12 ... and my EPOA was removed by bro-in-law after she'd been diagnosed with dementia and borderline personality disorder, but for all the trouble it will cause me if I try to stand up for myself, it's just not worth it. My sister won't discuss anything and has avoided me since I first challenged her over taking over mum's finances (having just sold bungalow) when I got ill 4 years ago and recent requests for answers to my questions by email have met with threats from them to put an injunction on me! It's really very silly and I think you're right it's more about them being scared of mental instability and their own mortality and they're projecting it onto me. I get upset and buy into it to try to get message across and it's like banging my head against a brick wall as I'm the one who continues to get hurt. I got taken to Bournemouth a few weeks after the SAH for a few days, then packed off home and that was end August 2004 and that's really the last time. Because of mum's vulnerability and neediness I try to keep the peace and avoid the legal route as she'll only turn on me if I upset them. I've lost all the family I thought I had, what a mug. And to think my ex-husband predicted they'd treat me like a joke when I divorced him for his unacceptable behaviour. Had a few tears when I went to see works counsellor today and she tried to hide her shock but asked why I keep going back for more - precisely! Anyway I'm in the BSF brochure and there are plans afoot to update recovery from SAH and I think I might suggest we are told more about recovery being so much tougher than "wait and see how it goes" as it sends the wrong message to family right from the start. Especially if they're scared of brain stuff. I did New Forest Half Marathon at weekend, so am made of strong stuff, just facing up to what I've always known and not wanted to acknowledge, that my family see things very differently and I should spend more time on me and less worrying about what they're all up to!

Sad but true. Laurenx

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