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Everything posted by Skippy

  1. Fear it will happen again is perfectly normal . As for living more freely, well, that depends on your state of mind. My husband loves nothing better than to tell me that I recovered so well because I'm as stubborn as they come - I tried not to let it stop me doing the things I wanted to do. There were times when I paid for it after - exhaustion, fatigue, headaches etc, but I was determined that I was not going to let it stop me living my life. My aneurysms are referred to as "doo dabs" by my Dad and "monkey" by my daughter ( who was 9 at the time and is now 23). Three months after mine I went to a Pink concert - I'd paid for that ticket and no way was I going to miss out!!! Remember, we're all different - our bleeds are all different and our aftermaths are all different. I've been very lucky in so much that I live my life like I did before - the only thing I notice is that my memory, which was near on eidetic, is now no where near as good (to me, whilst others still think I have an amazing memory). Recovery is relative to you and cannot be compared to anyone else. Do what is best for you to recover and, above all, listen to your body and your brain. Macca (Mod on here) once said that it's not about grieving who/what you've lost and being limited by what you cannot do, it's about being grateful for surviving and forging a new you with new limits - very wise words.
  2. Hi Carolyn I was discharged from hospital with absolutely no information on what had happened to me, what I should /shouldn't be doing or what I could / couldn't do. My "physio" before I was discharged was walking up and down half a flight of stairs and being able to take myself to the shower and the toilet. A pile of tablets were pushed into my hands and that was that. This was 14 years ago and no sign of COVID anywhere! Like you, I got more information from this site than from anywhere (and there were only 9 members when I joined!). In the last 14 years I have had two MRIs - the last one 18 months after my SAH and have no contact with any specialist since. I took myself to my GP when I began to feel anxious and depressed and was diagnosed with PTSD and referred to their therapist. He was amazing. Despite this, I still maintain that it was this site that got me through. Fluids and rest of most definitely the most important thing right now - as is trying to keep a sense of humour. Our dear departed Win, would also tell you to sing when you're feeling down or anxious - and its actually been scientifically proven to help. We're all here for each other with support and encouragement. Have you popped into the Green Room yet? Karen (our wonderful founding member) set up a forum on here where we could just go in for a daily chat and laugh - it's helped everyone enormously by distracting from the medical side of our situation. If you haven't visited yet, make sure you do. Keep posting, and remember, we're here for you every step of the way.
  3. Congrats Andrea - but what a way to be reminded!! Love your scenery pics - keep 'em coming!!
  4. Hi Kyle Welcome to BTG - yes, everything you describe is very common after SAH and, for some, does get better with time. Let us know more about yourself and the circumstances of your SAH - it's not just that we're nosy it helps us get an overall picture of you and your recovery - and helps newbies when they join to relate their circumstances and recovery.
  5. Hi Matthew Completely agree with what Subs has said. It's extremely hard for both parties as they are on opposite sides of the fence. I can understand the fatigue thing too - I'm 14 yrs post SAH this year and I still get fatigued after a full day at work - especially if it's been busy. I work in a primary school office, so I'm not walking 1000s of steps a day either. Your wife should definitely take a look on this forum - she doesn't have to create an account you can let her see through yours. Please keep in touch and let us know how you progress - you'll glean a lot of information and comfort from this site.
  6. Welcome to BTG and very glad you found us. I don't have a shunt but there are a couple on here who do, so when they see your post they'll be sure to reply. Can you tell us a bit more about yourself - especially the circumstances surrounding your SAH? Take care and feel free to ask any questions you like - we cannot offer medical advice, but we have a wealth of knowledge and experience.
  7. Hi Sarah So glad that you liked them - we all thought the brightness reflected your mum's warmth and personality. Lots of love and many, many hugs Sami xxx
  8. Oh My Sarah - so very very sad to hear this - in fact, I'm gutted. Your mum never failed to put a smile on my face with her posts, her wit, compassion and her positive attitude - and most definitely her singing. She was a huge part of BTG and she will be greatly missed. As Karen says, she was one heck of a lady. Sending you all so much love and many, many hugs.
  9. Please note that if this site asks for money then be cautious before proceeding or decline as we cannot guarantee this site and therefore cannot take any responsibility for your decision to proceed with any payment of any kind.
  10. It's only come with experience Mark . I was in your position nearly 14 years ago and if wasn't for the BTG and a very patient husband, I'm not sure where or how I'd be now.
  11. Hi Mark So glad that you found us and are able to get comfort and understanding already. You are, however, very early in your recovery so please don't expect too much too soon. I lost over a stone in 3 days hospital stay and my muscles wasted away very quickly leaving me feeling weak, dizzy and easily tired. Make sure that you're drinking plenty of water and, most importantly, listen to your body. Sleep patterns will naturally be disturbed, your brain has been injured and it can't stop working so it will also get fatigued - for me to the point where I got so tired I couldn't sleep. The way around this is to sleep when you need to, not when you should. It's good that you're trying to stay active, but don't overdo it too quickly - your body will definitely let you know about it. My favourite saying is "it's a long road to recovery, but you can make as many pit stops along the way as you like". Remember, its not so much about the destination, but the journey. No matter how little the steps are, they are progress and they mount up. Take care
  12. Hi Brenda So glad you found us too. I can completely relate to all you've said above about your hubby. It's like you're describing me. I couldn't remember people visiting the same day let alone conversations I'd had with people. The irritability was a given - for me it was borne through the frustration of not being able to remember things and not being able to do what I wanted to do. It is very early in recovery and it can be a long road to get there - but we're all different and our timescales will vary. I know it's hard for you right now, but try to stay positive and ignore the irritation. If you have to repeat conversations, then do so, but without reminding him you've had the conversation - hopefully one day he'll turn round and say "We've had this conversation!". We're all here to listen and help you both through this xx
  13. Hi Alison I had this, as have many others. Its apparently the blood dissipating back to where it should be. It is a very strange feeling - almost like a gentle internal massage.
  14. Oh Gem, I cannot express how sorry I am for your loss and under these awful circumstances. I sincerely hope that you manage to give your beloved dad a good send off in the weeks to come. Thinking of you all at this time. Much love and many hugs xx
  15. Matt, no one here thinks for one minute that you trivialising SAH. When I joined all I was looking for is affirmation that the emotions I had were normal / usual after something like this happening. The very fact that you are struggling means that this is not a trivial matter for you at all. Every one of us here came here for help and understanding, no matter what aftermath we were and are going through. There is a wealth of experience and understanding on here and that's what you may need to get you through the next few months.
  16. I'm OK to continue at the moment Karen - will let you know if anything changes x
  17. Hi Matt I completely understand what you're saying. I felt EXACTLY the same when I joined BTG. I had two aneurysms - 1 burst, 1 not - overall not a serious bleed. I have 9 coils split between both. I has my SAH early hours of the Friday morning, operated on Saturday and out of hospital on the Tuesday. I was back at work three weeks later (own business with hubby could sleep when I needed). I had no physical limitations other than tiredness. I now work 37 hours a week in a very busy school office and have worked full time since a year after my SAH. However, you are no more a fraud than I or anyone else here. You had a bleed - the hows, wheres and whys do not matter - it happened and its very hard to come to terms with. I was angry, frustrated and very scared for the first couple of years. The first anni-versary was the scariest - the irrational part of my brain told me that it was bound to happen again on that very same day. I went to hell and back that first year - my emotions were all over the place, I went from the heights of happiness to the depths of depression. I truly thought I was going crazy - it was the scariest time of my life. I lost who I was, what I did and how I felt - I lost me! The best advice is to let time heal, slowly accept your new limitations - the "new" you. I know that I actually prefer the "new" me - I don't sweat the small stuff anymore, I feel I'm more compassionate (maybe not more patient though!). It can be a long road to recovery (and I always say this) but you can take as many pit stops along the way as you like. You'll always find one of us here at each pit stop you make. Feel free to rant, rave, laugh, cry, shout and scream - there will be someone here who knows how you feel at each stop along your journey. Stay positive, look after you first and foremost and rest when your body tells you to!
  18. Well done Diane - that's fantastic xx
  19. Its perfectly normal for it to pop into your head. It'd be the same, I guess, if you had a really good experience about something; the memory would keep popping into your head. Unfortunately, this is something we'd rather didn't keep doing so. My therapist told me to let the "video" in my head run a little longer each time it appears - when I can watch the whole thing without trying to distract myself then I'm on the way to recovery mentally. My hubby had a very serious motorbike accident 4 1/2 years ago and I had to identify him before they could operate - I still have that memory pop into my head now - walking through A&E and seeing him unconscious in a bed (not a mark on his face) and saying "yes, that's him". Every time that thought popped in there I had a panic attack. My hubby's brain specialist put my in touch with CBT practitioner and he talked me through everything - it was brilliant, now I can "watch" that memory without the panic attack. Stay positive - it will get better hun x
  20. Hey there I did this for ages after mine. It dominated my every waking thought. It does get easier and you do get to a point where you don't think about it so much and then one day, you'll realise that you've not thought about it that much for weeks. Don't get me wrong, it's always there in your mind but it doesn't dominate quite so much.
  21. If you use ebay type in V Shaped pillow and cover - not sure how much they'll be where you are but in England they're about £6 x
  22. Hi Diane I completely echo everything that has been said. One of the first things I did when I came of my meds was drink! Not so much during the week as I was working, but Friday and Saturday nights, Sunday lunch times - it was getting out of hand and the worse part about it, the more I drank, the worse I felt. I had that open and honest conversation with my GP and was referred for counselling - after the GP pointed out that alcohol is a depressant, so instead of making me feel better, it was making me feel worse. At the time, when you're drunk, you don't feel or believe that, but the day after, oh yeah - left feeling 100 times worse than the day before. The best thing I ever did was see a counsellor - like Karen said, this might not be for you and, like Chelle, I was diagnosed with PTSD. Please make that call to see you Doctor and talk through the options. You've taken the biggest step towards help by being open and honest on here with us. I know it's different as we're all strangers and you're not face to face, but it still took courage to share. Be brave again, and speak to someone. We'll all be here for you every step of the way with all the advice and experience we can provide. Take care of you - you must be your number one priority xxxx
  23. Hey there - have you tried a V pillow?? I've had several since my SAH and they certainly help with the head at night - I take mine everywhere when I'm staying somewhere overnight.
  24. Hey Sallios Don't worry, you haven't posted anything inappropriate. Looking at posts that need moderating, I can't see anything from you waiting. It may be that you hadn't clicked on "submit reply" before posting another response. We know you appreciate the answers and advice, so don't panic
  25. Hey there After my SAH I went through exactly the same things as you're going through now. I was depressed because I couldn't do all the things I could do before - also ran (and still do) a business with my husband - now I also work full time in a very busy school office. I'm in 14 years post SAH in August. I also found that when I was feeling so low, my immune system went to pot and I got more coughs and colds in the first year after than I'd had in the previous decade. Coughing now still gives me headache and its the worst part of having a bug. The biggest battle you'll face right now, beside the fear, is letting go of the old you and accepting the new you. You may have limitations that you didn't have before and it's probably driving you mad, which isn't helping with your state of mind. Don't be offended by someone asking if you're Ok to use something that could potentially hurt you - my husband ran my baths for me for over a year as I couldn't gauge the temperature of the water very well and could have easily got into a scalding hot bath. I have the privilege of seeing this from both sides - my husband had a motorcycle accident 4 1/2 years ago that left him with a mild brain injury. He was very active before - played football 4 times a week, was always pottering around doing something. After he, like you, did nothing but sit and watch the TV for months. I was the same as your mum and wouldn't let him do anything that involved using anything like the kettle, the oven etc - not only in case he hurt himself but also in case he forgot he'd put them on. She's worried that's all - show her you can use it. Get out of the chair and go and put it on! Be kind to yourself, you (and all of us on here) have had a near death experience that will have an effect on us no matter how severe the bleed. Someone once said to me "Only you can let you be depressed" - someone on here described him as my living angel - ironically enough he passed last year from a brain bleed. Continue to "make" yourself get up and do something - make the walk a little longer each day, for instance. Fresh air and exercise will help keep you healthy and help your body fight off infection. Put the coffee machine on before anyone else does or asks. Take back a little bit of your independence each day, there's only you that can do it. If the feeling down continues, make an appointment to see your GP and asked to be referred to a therapist. I did, and it was the best thing I ever did. I'd go so far to say that the therapist and this site went a very a long way to saving my sanity and my life.
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