Katie_Todd Posted May 29, 2010 Share Posted May 29, 2010 Hi everyone! God am I glad I've found a support group to help me with whats happend! I've joined to gather information, read your stories, share mine (if you're interested ) and hopefully make some new online friends. I don't have anyone that I can speak to that actually understands what I'm talking about when it comes to the SAH, and as I don't have physical symptoms all the time people seem to think that everything is hunky dorey now... which it isn't! lol I have my parents that offer support (my mum is a godsend! I'm sure I drive her crazy with my constantly asking questions about what happened while I was in hospital that first week, but I still can't get used to the fact that I've lost a week of my life), my partner and a friend that tries her hardest to understand things. I'm sure you will be aware how frustrating it is to find that what people can't see... they forget about or choose to ignore. I suppose ignorance really is bliss sometimes! Anyway... I'm not really sure what else to say right now, but I'm sure I'll be a regular visitor to the site now that I know about it! I hope to speak with some of you soon! Katie x Quote Link to comment Share on other sites More sharing options...
Karen Posted May 29, 2010 Share Posted May 29, 2010 Hi Katie and a warm welcome! Glad that you've found us and hope that the support helps .... It's always good to speak or sound off to others that understand .... xx Quote Link to comment Share on other sites More sharing options...
bogbrush Posted May 29, 2010 Share Posted May 29, 2010 Hi Katie and welcome to behindthegray I'm sure many of us here have those feelings that because we have no physical symptoms, people think that we must be OK. I know I do, nearly 4 years on. It can be so frustrating at times. No one that hasn't suffered this can really know how we are feeling inside, but rest assured that we here know how you feel. Look forward to hearing more from you. Quote Link to comment Share on other sites More sharing options...
jess Posted May 30, 2010 Share Posted May 30, 2010 Hi katie welcome to btg look forward to chatting sometime. Jess. Quote Link to comment Share on other sites More sharing options...
paul99 Posted May 30, 2010 Share Posted May 30, 2010 welcome katie welcome to the site i wish you well in your recovery hoping you get all the information and help you require wishing you well take care Quote Link to comment Share on other sites More sharing options...
myratas Posted May 30, 2010 Share Posted May 30, 2010 Hi Katie A warm welcome to the site, we know exactly how you feel so you will can talk, discuss anything here, we are one big family! Quote Link to comment Share on other sites More sharing options...
Jan53 Posted May 30, 2010 Share Posted May 30, 2010 Hi Kate Welcome we all know how you feel, I'm still trying to understand a lot of things. I hope the site gives you answers to your questions, I'm sure it will. Quote Link to comment Share on other sites More sharing options...
KelBel Posted May 30, 2010 Share Posted May 30, 2010 Hi Kate We definitely know how you feel...it is my biggest frustration, after the lack of medical support and after-care, that others just cannot (or will not even try to) understand what we have been through. It is definitely a case of ignorance is bliss sometimes, I think some people are too scared to want to hear about it. (Even my GP's have literally told me to get over it and that sometimes we just have to push through our barriers, i.e. tiredness, and get back to normal! If only it was that easy...) Take care and hope to hear more from you. Kel x Quote Link to comment Share on other sites More sharing options...
lynz Posted May 30, 2010 Share Posted May 30, 2010 hiya kate , i know exactly where you are coming from i was 27 when mine happened so people look at me as completely normal , how old were you ????this is the best web site have found and the people on here understand and are very helpful ......lynz Quote Link to comment Share on other sites More sharing options...
Tina Posted May 30, 2010 Share Posted May 30, 2010 (edited) Hi Kate a very warm welcome to you So glad you found us ! Everyone on here understands how you feel, perhaps if you show your partner and friends this site, they may understand a bit more ? Look forward to hearing more from you. Take care. Love Tina xx Edited May 30, 2010 by Tina Quote Link to comment Share on other sites More sharing options...
Louise Posted May 30, 2010 Share Posted May 30, 2010 Hi Katie Warm welcome to the site... Not much more I can add, it is frustrating tho looking ok and not being able to let people understand. We do though:roll: Quote Link to comment Share on other sites More sharing options...
maggie Posted May 30, 2010 Share Posted May 30, 2010 Hi Kate, A warm welcome to you. I think it's safe to say most of us here can relate to your frustrations regarding our ' hidden illness' I know I do. I've started to believe alot of people are frightened to think about what we have had and simply can't deal with it! But I can assure you you will find alot of support here. Looking forward to hering more from you. Maggie x :redface: Quote Link to comment Share on other sites More sharing options...
johntaras Posted May 30, 2010 Share Posted May 30, 2010 Hi Katie, totally understand where you are coming from. My SAH was only six months ago but I cannot remember anything of the event or the following seven weeks in hospital. No outward signs of anything except my scars. I have found the site great for support and understanding, also knowledge because people have experienced what you are going through in one way or another. Take care, look after yourself and look forward to hearing from you again. Quote Link to comment Share on other sites More sharing options...
JayKay Posted May 30, 2010 Share Posted May 30, 2010 Hi Katie, glad you found us! My SAH was 3 1/2 months ago, and I can't remember much about the first week or so in hospital, but now that I'm home and looking fine (apart from a fast fading scar), it's hard to come to terms with the fact that I have cognitive difficulties. Luckily, unlike a lot of people I am getting good support from the hospital and from the neuropsychologist. Even my GP seems to understand that "it's early days yet" as I keep being told! Take care Quote Link to comment Share on other sites More sharing options...
LUISA Posted May 31, 2010 Share Posted May 31, 2010 hi Katie,wellcome to BTG its just the right place for you, we all understand how you feel "inside" eventhough no outside scars. You will surely identify many of your feelings in the stories reflected here. I am on my 9th month and still struggling with vision problems. keep posting Quote Link to comment Share on other sites More sharing options...
Katie_Todd Posted June 1, 2010 Author Share Posted June 1, 2010 Thanks to everyone that has posted a reply, it means a geat deal to me that you all care and take the time to say something! Lynz, I had the bleed 3 years ago... which would have made me 22. It took me ages to get to grips with my age afterwards, for some reason I thought I was 23... luckily I hadn't actually aged a year over night lol I wish it was something thats easy to recover from, you wouldn't believe how much my life has changed because of it! oh no, wait... you probably do all understand! lol Do many of you suffer with depression, insomnia and/or ME as well? I think they are what is making my recovery more difficult but the dr's don't really know. Either that or they just don't care. All 3 of those things were part of me before the bleed but seem to have got worse since. Katie x Quote Link to comment Share on other sites More sharing options...
Liz D Posted June 1, 2010 Share Posted June 1, 2010 HI Katy Welcome to BTG. Gosh you were young when you had your SAH. It's hard when there is another medical problem that causes fatigue. I have a thyroid problem and certainly for several months my SAH fatigue was just like the fatigue I get with my my hypothyroidism. It also causes headaches! But now I can tell the difference between the two. My SAH has made my thyroid problem a lot worse. My pituitary gland has been affected by the bleed. This gland tells my thyroid to make a hormone which is then converted through my liver into energy! But now that has all been fixed by tweeking my medication and the fatigue I get is cased by the SAH. Any chronic condition can lead to depresssion, especially if it involves pain. You have to keep speaking to your doctor, tell your dr how it's making you feel. Have you been offered any counselling by you dr? It's quite something to be dealing with ME at your age, never mind a SAH! Take care. Quote Link to comment Share on other sites More sharing options...
Vivien Posted June 2, 2010 Share Posted June 2, 2010 Welcome to the site Katie I suffered terrible insomnia the first 18 months after my SAH, it has slowly got better, but I still get the odd sleepless night. I also suffered from depression and went for counselling, which helped. Yes, we do understand Vivien x Quote Link to comment Share on other sites More sharing options...
Janet Posted June 2, 2010 Share Posted June 2, 2010 Hi Katie and welcome Look forward to hearing more from you. Quote Link to comment Share on other sites More sharing options...
LUISA Posted June 3, 2010 Share Posted June 3, 2010 hi, Katie Im also suffering depression for the last 7 months (9 monnths post sha) and visit spsycologist every week, apparently after such event some of us may suffer "post traumatic shock" which is my case and caused by being faced with a death threatening event in my life combined with others issues such as giving up smoking. No menstruation, no activiti when i was used to runing round every day at full speed. Apparently it takes a long time to get things back into place Quote Link to comment Share on other sites More sharing options...
kempse Posted June 3, 2010 Share Posted June 3, 2010 Hi Katie, I'm glad you found this site - it took me quite a while before I came across it. It' a pity that hospitals don't give out details of this site as a matter of routine following a sah - in fact to receive any information would have been helpful! For many of us, it is probably only when we read on here, what others are going through, that we realise that we are not alone with our feelings, thoughts, problems, experiences etc. etc. Hopefully you will benefit a lot from BTG - it has a very supportive and understanding group of members who are always willing to help with any concerns you may have. My Mum too was a godsend; in fact it was my Mum that could actually see something was seriously wrong with me and got me to hospital, whereas 5 medical professionals did not! Maybe you would benefit from some form of counselling if you haven't done so already, it seems there are a lot of things you are having to cope with - your GP should be more understanding and refer you to see someone, I would have thought. Best wishes, Sarah Quote Link to comment Share on other sites More sharing options...
Katie_Todd Posted June 3, 2010 Author Share Posted June 3, 2010 I'm recieving CBT for some of my issues now, its taken the NHS several years to sort something out though, which is very dissapointing! But at least they have now got the ball rolling! They now want to look into me having a BPD, it would certainly explain a lot of things! I did see a neuro psychologist for a month or so after the bleed but as my cognitive abilities wheren't too badly affected he just said that things would come back in time. Which they are doing, its just the other things in life that are so difficult now... like getting out of bed! lol I'm not sure who mentioned it but the age that I had the bleed was young... but I am to blame for it happening so early in life. I'm ashamed to say that I became addicted to drugs soon after my brother commited suicide and the drugs are what caused it to happen so soon. In some ways I'm glad it happened when I was 22 because I could have ended up with more problems than I have. However that doesn't mean that I still think drugs are a good thing! Whenever I meet someone who is an addict I now tell them my story in the hope that it shocks them into getting clean lol Katie x Quote Link to comment Share on other sites More sharing options...
Karen Posted June 3, 2010 Share Posted June 3, 2010 Hi Katie, It's good to see you being so honest with your post and nobody here will judge you .... However, try not to blame yourself for what has happened to you, as even babies and young children can suffer the same if there's a weakness present and they certainly wouldn't have had a lifestyle that's caused this to happen to them. I know that lifestyle can exacerbate a problem, but it's not always the cause of the actual problem itself ... I don't think that there are many of us who have led a 100% healthy lifestyle and I know of many others that also haven't and they haven't had a SAH or any other major health problems. I think that too many of us perhaps feel guilty and look for a reason as to why the SAH happened ...... would we have had a different outcome if we had all been fitness fanatics, didn't smoke, didn't drink, didn't get stressed, didn't eat pizza etc? Who knows ... we've all probably beaten ourselves up over that one, but we're only human! Sorry to hear about your brother ..... I think that you will find that they're a few people on here that will be able to empathise with you. Suicide and mental health issues still seem to be something that's not widely talked about, but issues that many family's have had to face, including my own. Can you tell me what a CBT and a BPD is? xx Quote Link to comment Share on other sites More sharing options...
maggie Posted June 3, 2010 Share Posted June 3, 2010 Hi Katie I totally agree with everything karen has said. I don't think you should blame yourself at all for what happened and am sorry to hear your sad story. Also like Karen and so many others here - i'm sure - can relate to the problem of mental health issues. I hope that soon you can stop blaming yourself and instead of shame feel very proud that you have survived thus far as i'm sure like the rest of us it has been a struggle. Love Maggiex Quote Link to comment Share on other sites More sharing options...
kempse Posted June 3, 2010 Share Posted June 3, 2010 Hi Katie, Reading your last post brought a tear to my eye; please don't blame yourself, you have had such a sad event to deal with and possibly you didn't get the right kind of help that you needed at the outset. At least, as you say, the ball is rolling now even though you have been let down in the past. I do hope that things start to improve for you; you sound like a lovely person who deserves the help that will hopefully assist with your current problems. I too, am ignorant of what CBT and BPD stand for! It takes some courage to open up on a forum - I admire your strength in doing that. I wish you all the best for the future - try and keep us posted. Take care, Sarah. Quote Link to comment Share on other sites More sharing options...
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