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Showing content with the highest reputation since 14/07/19 in all areas

  1. 13 points
    When I was back in hospital in 2012 I was pretty destroyed if I am honest. I had my grade 4 event, grand mal seizures, acquired hydrocephalus , EVD surgery, coiling surgery and , endured the weeks of intensive care, of hospital stay. It was a long 7 weeks before I was allowed home and then when I did get go to home I could do nothing. I had sitters, I couldn't Cook, wash, sleep normally, let alone do any of the grown up things like look after my young girls or cook, work, or drive. I was 39 years old. But I tried to start putting the pieces back together but three months afterwards ended up blue lighted back up the M1 to my treating hospital with dangerously high level pressure of hydrocephalus. Numerous lumber punctures followed, some falling out of my hospital bed, the odd bed pan hilarity all led to my then having further surgery on my traumatised brain and a VP Shunt fitted. It was awful. I remember this time vividly. I have never felt such pain tbh, I was so ill, fair few near death moments, but again I was one of the lucky ones, I came home. That time, that new birthday started 8 years ago today. International women’s day. A time for looking forward and so have always tried to do that since. I started blogging after having my Shunt placed and still in hospital and found BTG not long after I got discharged before that I couldn't read a screen or at all if I’m honest, I had hidden the effects of the hydro so scared I was of going back in. So I blogged today about a few learnings. https://popgoestifty.blogspot.com/2020/03/annie-versary-post-transformation-and.html I have regained so much my fellow BTGers from that day but have also adopted a new style of being. No rush, try not to ever worry, about what I can’t change, lean and try and accept the pains in life and hope they will pass and mostly just enjoy this day. Even if all you can do today is wash your hair then that is an achievement as I know how it was not to be able to. Celebrate and see the good and the possibility and go steady. And reach for Help. BTG has been here for me along the way, someplace I could ask those question that’s filled me with fear, where I could tell someone else, hey that ‘s ok or me too , and where I allowed myself to adjust to a life’s that changed forever in the instant and go on from that. Privileged to be part of the gang. As Win would say I think, I gave myself permission to sing again...or maybe she did!! Go steady everyone Daff x . Postscript, my post SAH life continues to unfold, twist and turn, in the years since my girls have passed exams, with one about to start to drive, I have lost my darling mum, two aunties and countless friends through illness, I am back at work doing a job Im good at but done to my limits and I have got three dogs now, and the latest is a corgi puppy ( cuteness overload) into the mix so I walk everyday with them and am better for it. I struggle with memory but have prompts everywhere and by phone an day have retrained my brain to remember stuff differently, I am kind to myself, if I mess up that’s ok and I struggle daily with fatigue. But on the whole still Improving and a complete transformation from 8 years ago. Keep on keeping on
  2. 13 points
    Apologies in advance it’s bit long winded but then it has been 20 years seems a bit surreal really, but thought because it was that long I’d share a bit of how far I have come since that time a long LONG way so many up’s as well as down’s on here I use the phrase ‘swings and roundabouts’ and that is true of my recovery for every few steps forward there was the same and lots more back the way but eventually there were no steps forward and this is it. Keeping a diary is a good way of knowing how much things improved something I didn’t do at the start I kept forgetting to write things down (memory) or I did write them down but in the begin I’d miss pages out it was hard to find what I’d last wrote or I’d turn the notebook upside down and write thankfully that’s not the case now So there’s an improvement in itself. And I now use the computer so that really helps. Day before my 2nd Ani-versary on of all days Halloween my Dad passed away that was a challenge I have to say and the fact would I cope, well simply I muddled through about all I can say there, waded through some horrific times with his neighbours, all this brings you so low but in the end makes you so strong. So really since the first Ani-versary I don't really do anything and the reason for that mostly I have my Dad’s aniversary on 31st Oct, my Ani-versary on 1st Nov and my Mum’s anniversary (also the day my Dad was cremated) 6th Nov. But as the years go it’s gotten a lot easier, although this year has been challenging with the constant mention of 31st October. In 2006 I stumbled on BTG I hadn’t been using to using a computer long and the search would have been limited I think it was something like ‘people recovering from a Brain Haemorrhage, so the basic of the basic and the first thing I saw was Behind the grey had a nose and have never looked back Karen and Sami were so friendly and that was that, I am so grateful to them for just basically being there. When I got here the site hadn’t been running all that long but I was 6 years down the road at that time in recovery bobbing along, but Ronnie’s young cousin Candice had died of a SAH caused by the shrinkage of a Tumour she was one of 6 all girls I first meet her when she was 4 or 5 she was 18 when she passed, we went to Stevenage for the funeral OMG! That was hard and on my return I was I guess suffering from ‘survivors guilt’ I was doing a computer course at college for people like me with challenges so used what I had to find out about this feeling of no one else understanding how I felt and how it was to have a Brain Haemorrhage feeling so alone. And finding BTG found I wasn't the only one feeling isolated and alone at last there were others who knew just how I felt-they got it. I am eternally grateful to Karen for this site. There was a support group at the hospital I was in, met once a month first Monday of every month at 7pm – what why can’t it be in the day, I don't do evenings!! I mean I just found this strange having chronic fatigue all the time and having to go to a support group meeting in the evening just seemed daft! Needless to say I never went. In 2007 we decided to move house could I have done that in the early early years No I couldn’t I can honestly say hand on heart I don’t know what I was thinking about, but the thought of not having to climb 3 flights of stairs was alluring I was willing if not actually able to move. It took a long time to get used to the new place, surroundings, and people. I now live in the village my Dad was born and brought up in and in the early days of living here I was sure this place was my Past, not present nor future, but it’ll be 12 years at the end of November since we moved here so always hang in there give it time, don’t throw the towel in till you’ve tried, that’s me anyway thankfully I have a lot of my Mum’s traits and that was one hers. There have been many challenges since but if there’s one thing having had the SAH you have strength in other ways. Last year I lost my Uncle after a very long battle cancer and then Dementia took hold. I took my first flight in well over 20 years, and tried to be as much support to Ronnie as he’d been to me over the years I think I wouldn't be the person I am without his love and support and the massive encouragement he’s given me time and time again.. It’s a bit of a surprise really to find that its 20 years since I left work at 5pm on 1st Nov 1999 I barely remember getting home that night then simply life changed. But I feel very blessed to have what I have and I never take things for granted I have two pictures on the wall in this room; ‘When the world says give up, hope whispers try it one more time’. And the other says: ‘We create our tomorrows by what we dream today’. Thank-you to Karen and everyone on the site. xxx
  3. 12 points
    Thank you everybody for the kind sentiments, gestures and comments for my mum, our family appreciate it very much. xxx
  4. 11 points
    March 6 is the day. It feels like a lifetime ago (so many changes) and yet, also only like it happened yesterday. I am just now starting to adjust to the "new normal" and taking more command over my emotions. My faith has kept me hopeful. I am thankful for my family, friends and BTG folks who have surrounded me with prayers, support and love ~ and patience. It's been a difficult recovery. I think more so because during this time I lost my mother while I was still in the hospital (April 2018), my father this past November 2019 and my aunt (mother's sister) just on February 15, 2020 ~ she was a second mom to us. But, a new little grand-daughter was born April 8, 2019. I am so glad to be here to celebrate her upcoming first birthday! We have four grown adult children and spouses and have four wonderful grandsons as well 10, 8 and twins 7. Now at 62, my husband and I are raising our adopted 2 special needs children 10 and 17. This keeps me insanely busy. The oldest joined our family just 6 months before my event! After my SAH, I retired early from part-time teaching. I miss being a teacher : ( I have appreciated EVERYONE of you who have written about your lives, joys and frustrations and EVERYONE who has responded ~ it encourages so many readers ~ like me! My heart is full of gratitude, Kathy [Thank you Karen and team for keeping this website going]
  5. 10 points
    Devastated by this news. My SAH was almost ten years ago. It was some time before I found out about this site and when I joined Win was one of the first people to greet me and she told me about singing and having a laugh. I didn't think much of it at first but then one day she said something very profound and it has stuck with me ever since. She told me there was always someone worse off than yourself, and rather than be miserable and look on the down side of life, I should look for new opportunities as the 'new you.' It didn't dawn on me until a couple of days later what she was really saying- my flash to bang time wasn't very good after my SAH - that she was indeed talking about herself, and she was basically telling me I should count myself lucky. I could still see my kids and grandkids grow, I could still walk and talk and look forward to going back to work, albeit in a reduced capacity, and so on. The more I thought about it, I thought that's one savvy, gutsy lady, what have I got to cry about. From that realisation day on, I always tell people to look on the bright side of life, have your sad moment, but then get back on your feet and take the world on and get the most out of life. That's what Win did for me - and she told me in that most British, English way - with classic, understated brilliance and simplicity that I only had to open my eyes to see. Thanks Win, RIP Sleep tight. Macca
  6. 10 points
    Oh Sarah, I’m so sorry about your lovely mum. She leaves a huge hole at BTG and I’ll so miss her cheer and optimism that she often shared with us here. She was one of the shunt gals gals and I Loved my ‘Mrs O’ chats in the green room, she even changed her picture to Mrs O. She was a special brave lady and so proud of you, her Al and of course Tilly. take care in the coming days. Let the tears flow. Let us know if practically there is anything we can try and Help with as her community of online friends. I guess The singing just got a whole lot louder where she is now. They are blessed. Will miss you Win. 💕 Im just editing to add , this from one of Win’s posts in 2016 “Be Well, smile and sing (My answer to everything) !!”
  7. 10 points
    If the mountain seems too big today, Then climb a hill instead. If the morning brings you sadness, It’s OK to stay in bed. If the day ahead weighs heavy, and your plans feel like a curse, There’s no shame in rearranging, Don’t make yourself feel worse! If a shower stings like needles, And a bath feels like you’ll drown, If you haven’t washed your hair for days, Don’t throw away your crown. A day is not a lifetime, A rest is not defeat. Don’t think of it as a failure, Just a quiet, kind retreat. It’s OK to take a moment From an anxious fractured mind, The world will not stop turning While you get realigned. The mountain will still be there When you want to try again, So climb it in your own time, And love yourself till then. Author : Laura Ding Edwards
  8. 10 points
    I hope that this gives you a little comfort and today is my 14th year after the 2nd SAH ... It was as hot as it is, today... I'm still kicking! Lots of love to you all....xx
  9. 9 points
    Hi Everyone, Well here I am 6 years since my bleed, can't believe how quickly this time has passed. I think I am doing ok, still noticing small improvements, although I still have a lot of problems with fatigue and my memory I am still learning my limitations, still sometimes pushing myself beyond them and paying the price for doing so, I think we all do that sometimes. The last 12 months have been good and bad, the good being we bought a nice new caravan and had a very large new deck put on it, it's lovely, it really is my sanctuary and having it has helped so much with my recovery, I always feel so relaxed when I am there, no stress in lovely surroundings is really great medicine. The other good thing in the last 12 months was seeing Jan achieve her goal of getting on an aeroplane again, I was over the moon for her, I am aiming to do the very same for my 60th birthday 2023, I know that sounds a long way off but I want to try to save enough to spend 1 month in Lanzarote my favourite holiday destination, so that's the thinking behind it. I also finally got to meet Andrea when I made and delivered her daughter's 18th birthday cake, she really is a lovely lady and it was nice to put a face to the voice after spending so much time talking on the phone to each other. The worst thing to happen was the loss of our very precious friend Win, it really knocked me sideways when I read Sarah's post to tell us that her lovely mum had passed away so suddenly, still struggling to come to terms with it. She always made me smile and laugh out loud with her posts and her singing, she also used to tell me off for talking about the cakes I had made, I would have loved to have made a cake for Win, she will always have a special place in my heart.💔 I want to say a huge thank you to everyone at BTG for always being there, no matter what happens I know I have a place to come where I feel safe and won't be judged. Thank you so much to Karen for giving us all a place where we can feel safe and understood. Anyway here's to the next 12 months, who knows what it will bring. Thanks again everyone Love Michelle xx
  10. 9 points
    Thank you for the lovely flowers and card we just received, it was very kind of you all and much appreciated. My dad placed them on the table next to my mums chair. sarah xxx
  11. 9 points
    Dearest Sarah, i had not been on in a bit and this is the first thread I came upon. I am so shocked and saddened for the loss to BTG but know it is nothing compared to what you and your family is enduring. Win has been such a bright light to us all, always ready with encouragement and so good at teaching us to laugh at and accept ourselves. She will be so sorely missed. Prayers of comfort for you and your family, including Tilly. It was so clear how very much she loved you all. Colleen
  12. 9 points
    Oh no Sarah, devastated by your news. My sincere condolences to you all. Win was a member of this forum who always brought a laugh and a smile to me, and her singing, well. She will most certainly be missed on here. God bless you all.
  13. 9 points
    Dear All, I haven't visited BTG for a while now, not sure why, I always get such great support and understanding. I think perhaps having found things getting harder over the past year or two, I have wanted to give less "air time" to SAH related problems as they were already taking up more of life than I would wish. This time five years ago, I was just getting started in the gym, a normal session, just a tad late out of work and getting going on the session. Then as we are all familiar with, that thundering pain at the top of my neck. Really thought I'd just messed up a disc or nerve badly, and my main thought was, dam this is going to mess up my ski trip. Little did I know..... For me the anniversary reflections are somewhat cathartic, a chance to vent & reflect. This is the one place I feel I can do this and know that many will share similar experiences and feelings. I have deliberately kept to a minimum that kind of discussion with friends, no one needs an illness bore, and we are in this for the long haul. I reflect that five years ago I had a job that I loved (well 90% of it!), life was good, and we were starting to feel financially a little happier. Now I have had to step back from work completely. That is a life that is behind me, and I do mourn that. I have tried some different volunteering, but even short sessions once a week are too fatiguing. I think the worst thing for me now is the boredom. I was a doer, forever busy, work, exercise, music, travel. Now as many of us have to I have to pace myself, I have my afternoon nap, life is at a different pace. Work provided a purpose for me, a focus to life that I like Targets, things to strive for an achieve. Now it is gone, I miss that "reason to get up". I know this is the one thing I really need to work on, for the sake of my mental health. (any suggestion for non-fatiguing inducing activities grateful received!). I can't listen to music, gigs are a complete no, and I think I frustrate the most by the things I can't avoid. The support one needs to give to family you can't not give. Those times when others need your support, that really highlights for me all my limitations. This is when I do myself the most harm in terms of fatigue, one day I will learn! I know I am lucky, it could have been so so much worse that day five years ago. I have never felt why me, it has always been why well not me? Just dumb luck, nature, the way I was born, genetics, I don't really care. Now get on with what you have got! And for what I have I am grateful, but the initial optimism of the first few years post SAH has given way to the new routine and some realism. Initially we had no idea what the impact was going to be on my life. The medics gave me no more advice than don't go for a run for the first couple of months, after that do as you please. Running is something I don't do now. We all have such different roads of recovery and I know compared to some I am a lucky lucky man in so many ways. I think I do accept where I am, I just need to learn to be happier in that place. Thank you to anyone who has read this far and indulged me in these reflections. As I said this is a cathartic process for me, and in the writing down and sharing of this all, it helps, so thank you. I hope you are all well, and happy. All the best for the new decade, onwards and upwards! Greg.
  14. 9 points
    Hi, Thought I'd share my experience with you. I am 66years old. I didn't know this at the time but when I had my SAH in 2016, my brother was told I had only a 20% chance of survival. 6 months down the line, I was just about to be released from neuro rehab. I was able to walk about 20 yards but had to stop for rests several times. I was still partially wheelchair bound. This was not acceptable to me. I forced myself to walk at a very slow pace for an hour a day. I fell over a lot. My progress was further hindered when I needed a new hip. That was then. Now I am walking between 3 and 5 miles daily. I have walked 9 miles a few times. I am back at the gym. I am back in karate. I still have limitations. Fatigue is a problem at nights. My kicks in karate are appalling. Nothing comes easy but it can get better with determination. If I may give you some advice or would be - never accept your limitations or they truly become your limitations. The future will be brighter. My sister in law accused me of being too stubborn for my wheelchair. Get stubborn. Get better. Mike
  15. 9 points
    I am so soo glad to share with all of you, I just finished a half marathon. I am 7 months post NASAH. Feeling very emotional right now. Thank you all for the extensive support. You guys are the first ones I am sharing this with. Thanks again.
  16. 8 points
    I am so glad to have found this site or to be honest my wife did! I have been in touch with "HEADWAY" and they have been great but this site seems so interactive and understanding. It has been more than a year since my SAH and all the complications that I endured ie Hydrocephalus,drastic decreasing of sodium and Vasospams. I really do not remember the event happening but thank god my wife was here with me when it happened, or I would not be here talking about it. I have a shunt fitted and would love to hear from others with one implanted, as I have had problems since I have recovered. This site proves the old adage "It takes one to know to know one". Many thanks!
  17. 8 points
    So so sad to hear of the passing of the amazing Win. Always had a cheery tale to tell and positive words for newcomers. Our loss and a new angel for heaven xxx RIP Win xxx
  18. 8 points
    The song thrush was out last night in the garden....made me think of Win. x
  19. 8 points
    Donated some money to BTG in memorium to win. We will all miss her. I thought about her this weekend when I had to dye my hair myself. she always made us smile. May she rest in peace.
  20. 8 points
    I've stuck a big heart on my window for Win .... It's next to a big basket of teddies and at 8pm ... I'm going to bang on a saucepan and rattle it, like no one has even seen! xx
  21. 8 points
    Sarah I am also devastated to read your news about Winnie's passing. Winnie was such a great 'online' friend to me personally since we met 5 years ago and as Karen says she is so well liked by everyone here on BTG with her own incredible sense of humour. Her encouraging words to everyone ..'Think happy thoughts and keep singing ' will never be forgotten, and her frank insights into her childhood years with her family as she grew up were lovely to read. Thoughts and sincere sympathies are with all your family especially you, Al and Tilly. Subs
  22. 8 points
    Hi, I am a day early with this post, due to work. April 25, 2017 was the day that I had my SAH...it was something I never saw coming...It was a small SAH as I read my medical records but it felt like someone hit me with a bat in the head. I spend 3 days at Mass General in Boston...I was in good shape when I was discharged, some pain in head but nothing else. Moving on to the morning of April 29th....In the shower, home alone I had a severe vasospasm...noticed hands losing sensation and feet also, I was able to call emergency (put on some clothes I don't remember anything till later that evening, when I was told I was in ICU, at Mass General. For 4 days I drifted in and out. So a week in intensive care, intraarterially delivered verapamil...tests...on and on..I was off to rehab as I couldn't sit up and balance was all off...Rehab was very helpful, although my ability to do things like use my cell phone, math anything that required multiple steps was a challenge, that would stay with me to some degree. Whew...so today...I am happy to be able to write this...so very happy...I am back to my job although have cut hours. I still do struggle with things that take multiple steps but notes help me and if it is something I do over and over, I get it...My sitting issue is long gone and my balance is pretty good left more with a feeling of being on a boat...hence the screen name Swishy What I will add is this...at year one I was still living this everyday, like a backpack that went everywhere with me, a heavy backpack....At year two, I was disappointed the backpack was still there, not as heavy but with me none the less.....As I write this 3 years out I have made huge progress this year in leaving that backpack home. I am so much better, mentally at year 3. It makes me realize recovery continues. I am not young 64 at my SAH, so now 67 but yet I am moving forward. This site has been therapy for me, thank everyone of you for your answers and enlightenment. xx Jean
  23. 8 points
    With many thanks to those members who are making a monthly donation towards BTG funds.....It's very much appreciated! x Also, a big thank you to Marobinson71 for a very generous donation and it will help to keep BTG up and running for a further 3 months, which is fantastic! Thank you guys! x
  24. 8 points
    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
  25. 8 points
    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.
  26. 8 points
    Two years ago today I had a dental injection which caused the first of four thunderclap headaches. I didn't discover for another month that I'd actually had a SAH. It has felt an odd day, last year at this time I'd just been threatened with redundancy and so the anniversary passed me by in a haze of stress and fear about my job, this year I've felt just how lucky I am despite everything. I'm definitely learning my limits, and learning to say no more (especially to work) but I am fed up with having a two year headache and also with the fatigue. Knowing there are people here who "get it" completely is wonderful, especially as I have learned exactly who my real life friends are. Thank you all for listening, and supporting during my journey & here's hoping that things do improve some more, however slowly.
  27. 8 points
    Just to update, I have today survived the angiogram! I got up at 5am to be at the hospital for 8 which had been changed from the original 8.30 as my procedure was due at 9am. But when I eventually got down to the "angio" room at 10.15 I was told they hadn't had the results of the kidney function blood test. Apparently I should have had all the blood tests done at the pre-op assessment, but no-one took any blood. I don't think the radiologist was too impressed! So they did a finger Prick test and I must have passed as I was then wheeled into the room. When I recently purchased some contact lenses so I could see my brain on the monitors above, I didn't factor in that technology has advanced since my last angios 10/11 years ago and there was only one large monitor which I couldn't see anyway, so it was a bit disappointing! I was forewarned when the dye would suddenly heat up my head/neck, but at that point I was beginning to lose faith when he said "you will now feel heat on the left side of your head, I mean right side - sorry about that, I don't know my left from my right" I also got the flashing lights which I didn't get last time. It took about half an hour to complete and then the usual 4 hour bed rest. The neuroradiologist said he would look at the pictures in more detail, but he did say that, although blood was still entering the aneurysm at the base, he didn't, on first inspection of the photos, think it would be worth putting me at risk with more surgery - that was music to my ears! I just hope he doesn't change his mind when he's had time to take another look. Apparently I can't drive for 7 days, I don't remember that last time round. Oh well, I'm a lot happier now than I was early this morning! Sarah
  28. 8 points
    Some great advice already and I hope that one thing you can take to heart is you are not walking alone in this and it is ok to feel as you do as it was more than our brains that haemorrhaged , its effect is across our lives from the moment it happens. When I look back the first 12 months were all about, surviving , dealing with pain, reeling from one step forwards then back. Then the second 12 months were about taking stock of what was lost to me and with that a realisation that life had utterly changed and not just for me. Talking that through is key. I echo Louise that Headway are superb, were for me anyway as assigned me a case worked who helped me regain things I had lost confidence to even try. Go back to GP and demand they help you , advocate for what you need and if you feel you can’t can someone help put that are across. Speak to your treating hospital and ask what help they can give. There is support out but sadly you have to fight for it. Try to break things down smaller and set different standards of goals. You cannot roll back to where you where before your bleed happened but you can move from from now, in this moment and see what is possible for you today and start to celebrate that as much as you can. Write those things you achieve down at the end the end of the day, what has been good but also write down what made you sad, cross, and then let it all go for that day and start each day anew. One thing for sure is that life post SAH is never the same two days in a row. You are still you with a life to be lived I promise, but you are compromised in what your brain will allow you to do right now. If you are low energy then it is a sign your brain is requiring that energy and is healing massively. Respect and nourish that . Eat well, move as you are able and set yourself goals and rest whenever you need to without guilt and see that combination as your path to future continued healing, i wish you well. I am 7.5 yrs out. I know this version of me better now but early on, well let’s just say I did not like the upgrade much and was resentful of what I had lost. Today I celebrate each day, what I am able to do, I have regained much but move at my speed, my pace for this day and always stop to smell the roses. Go steady and be kind to yourself . Daff
  29. 8 points
    Hey Greasly 23, Guess what? You have a new set of challenges to rise to now, not better or worse, just different. 1) Is to start looking at things in a more positive light - it's amazing what impetus a different outlook can give you 2) Is to start doing things and being proactive, however small and let people see you are trying. If they see you do this they should be more willing to start helping you themselves 3) Is to start getting better - doing things will help this. You've just fallen back a bit, now you must start climbing again. 4) Is to do a little tidying up and then sit down again - then do a little more. 5) Is to lay down some ground rules for the others in your house to chip in and do a bit - you can't do it all on your own anymore. 6) Is to get some dietary advice from your doctor and stick to it and try a little exercise - even if it is only going for a short walk in the beginning - even if it is with a stick or on a treadmill if you have one - do something. You are only 20 months out. I was over 24 months out before I could do a thing. Yes it is frustrating but I started to do little things and the little things became bigger things, and then bigger things still. On Saturday I am nine years out, but I am still not what I was but my quality of life is good. My outlook is positive and yours can be too, with a little grit and determination. Life is worth living and the rewards within myself are huge. I have seen my kids embark on their lives, my grandchildren grow up and I hope to see them married and in good jobs in due course too! Life changes - it's how you deal with it that counts! Remember the song ....."I get knocked down but I get up again"....? Keep digging in and making others astounded at your progress. Good luck Greasly 23, I really mean that. Listen to what Skippy says re therapy - it really can help to get you on that recovery route. One last thing - when you get frustrated - feel free to rant - it's why we are here - we've lived the nightmare too - but we all woke up to overcome it, Best wishes, Macca
  30. 8 points
    Hello Katow My husband has NASAH on 20th May this year, he's a healthy, fit 57yo. I did a lot of research, and read medical journal articles in the weeks after his haemorrhage. It is confounding that something so life threatening can occur to a health focussed and fit person. The truth is, it can happen to anyone, of any age, and for reasons that cannot be explained (I witnessed people of all ages in the Neurology ICU with my husband, he was too sick to observe what happened for those people, I watched as people fought for their lives, and others lost their lives, all happening around him). Having something so life threatening occur is in itself enough to trigger anxiety and panic disorder in the best of us, if you had any pre-existing anxiety, it's not surprising that you could now find yourself struggling, especially so soon after the SAH. What I found is that the medical help kept my husband alive and aided his recovery, but once the medical crisis had passed their job was done, and no further support was forthcoming. I agree with others that counselling and mental health support are also a big part of the recovery. We know that life has changed, we are incredibly glad to have my husband still with us and because he was so healthy when the NASAH happened, his prognosis for a 'full recovery' is very good. We don't know if he will return to his job as a locomotive driver, but we know there are more important things in life. As I said to him, we can't go back , we can only go forward. Having a health crisis like NASAH is confusing and very distressing, but it clarifies what is important in life, and what the priorities are. I wish you all the best for your recovery. The stories and support I have received on this site has been incredible and a huge part of me coping and helping my husband cope. I hope you will continue to find comfort and support here, you are among friends and fellow survivors. Veronica
  31. 7 points
    I loved your mom so very, very much. She was my great friend and I will miss her dearly. Love to you and your family. Carolyn
  32. 7 points
    Sarah, I am so very sad to hear that your lovely Mum has passed away, you must be devastated - my thoughts are with you. Reading all these tributes has brought a tear to my eye as I too will remember Win as a lady with a great heart, a fabulous sense of humour and an infectious singing voice. She was a remarkably strong person for recovering so well after her sah with all the added problems that she encountered along the way which you bravely shared with us at the time. Then we met Win on here and she became one of the family and kept us all entertained with her upbeat attitude. She will always bring a smile to my face as I remember her posts in the Green Room, she will be missed by us all. Love to you and your Dad, Sarah x
  33. 7 points
    Sarah, I’m so so sorry to hear this sad news. Over the years dear Win gave me such strength and lots of laughter, through some very difficult times. Heaven has gained a truly amazing bright star. I shall sing out loud for you lovely Win. Much love and great big gentle hugs to you all SarahLou Xx
  34. 7 points
    I had not realised until I read these kind and supportive words, how sad and anxious I was. The tears have relieved the tension that I have been feeling and I thank you all for the part you have played in that. John and I took the dogs for a walk today and I was mindful not to walk too far ahead of him along the path through the woods, and to wait for him and be patient. I know I will not change overnight but to know that our situation is one that others know about and have been through is an enormous help to me.
  35. 7 points
    Hello my name is Simone. I am excited and nervous to have this resource. My husband found it for me over a year ago. I have read many post and feel comfort knowing that I am not alone in my struggles and victories. In 2016 I had a Hemorrhagic stroke due to postpartum preeclampsia. The bleeding was in my right Occipital lobe and affected my vision. Recovery has been hard and I am not who I was prior to my stroke, but thankful to be here with a new sense and perspective in life. Flash forward to 2020 I am pregnant again and very nervous. I will try to post, when I have time and courage. I am hoping that my stories can help someone or maybe get advice as well. Thank you for reading my about me 😊
  36. 7 points
    I just found this site! I"m coming up on three years since my SAH. I am so excited to read the experiences of others who had a similar experience. In March 2017, I took my dog for a walk as normal. I was a healthy 59 year old with a history of exercise and regularly jog, lift weights and achieved a 4th degree black belt. No one has ever accused me of being a delicate flower so when I experienced a headache so severe it almost brought me to my knees I knew something was seriously wrong. This was pain!.... I'm not sure exactly how I made it home as i was probably 1/4 mile when the pain occurred. I remember looking in one of the houses as I passed and wondered if anyone saw me holding my head and moaning. Funny what you think about and remember. Thank God for my husband who called 911. There are many details around that call and the trip to a community hospital that would make you cringe, but thankfully I made it to Massachusetts General Hospital that afternoon. No coiling needed! I was home after a few days. I did have severe back pain a few days after and was told it was the blood in my spinal cord and it would go away. Looking back............ I assumed the head pain would go away too. I was most certainly much better than it was at onset, but still there. So what does one do after an event such as this? Carry on! "I'm fine!!" "Fine, Fine, Fine!" So grateful to be alive and off to church I went thanking the Lord for my husband, my family, modern medicine and a Savior who loves me. Let me say I'm a person who hardly ever had a headache. Now as days grew into months I continued to have a buzzing, painful sensation in the exact same place as the excruciating bleed. Someone described a crescendo type of pain that would decrescendo and sort of fizzle out. In my desire to carry on I just power through it when it's bad but that results in fatigue and tiredness that feels like a weighted blanket on my body! I also noticed that I have trouble recollecting things. For example, repeating a list or instructions is impossible. Some would ascribe it to my age... but I can put in on the calendar as happening the day of my SAH. Anyhow, that' my story in a nutshell. I still get the buzzing headache and I'm wondering if anyone else has experienced it? If you took time out of your day to read my story this far I thank you. And to all the wonderful folks on here who have shared and supported others thank you as well.
  37. 7 points
    Hey Diane, I'm guessing that it wasn't easy for you to post, so well done for your honesty! x I do know of other SAH'ers in the past, who've also self medicated using alcohol, because they were finding life tough in the early months and years of recovery. I'm guessing that there are others on BTG now, experiencing the same, but who would perhaps prefer to private message you, rather than using the forum in order to keep their privacy. Firstly, I would say that you need to visit your GP and have a completely honest conversation with him/her. Let them know that you're struggling with your mental health and self medicating with alcohol in order to deal with either your anxiety and/or depression. It's pretty common post SAH/stroke to experience both anxiety and depression. Life has been turned upside down and there's also the trauma of the physical bleed on your brain and the brain's chemical issues that may have been affected. I know that you're not in the UK, but I'm guessing that you have the HADS scale in the States.The HADS scale measures your anxiety and depression - The following is an example of the questions that you would answer - https://www.svri.org/sites/default/files/attachments/2016-01-13/HADS.pdf I truly believe that all SAH'ers should be given the HADS form by their GP to complete at different stages of their recovery. It also has to be answered completely honestly. We all like to think that we're invincable and don't like to admit that we're struggling with life, but in fact mental health is just as important as our physical wellbeing and the two go hand in hand. The first port of call should be your GP. Be absolutely honest as to how you're feeling and make that phone call. It can sometimes just be a simple fix with a blood test. Vitamin deficiency can also cause a myriad of problems with both your physical and mental wellbeing. If you're drinking alcohol excessively, it will also deplete essential vitamins and will cause you problems. There's also the menopause to consider for us Ladies of a certain age, as that can also cause quite extreme mental health problems and these can also mirror SAH recovery problems with anxiety and depression... so don't put everything down to the SAH .... https://health.clevelandclinic.org/is-menopause-causing-your-mood-swings-depression-or-anxiety/ Try to rule out with your GP any other causes for your low mood. I've never self medicated with alcohol, but had huge anxiety problems and it took me absolutely years to admit to the GP that I was struggling badly with anxiety. Plus the menopause kicked in and the hormones just went haywire! I also couldn't take HRT as I had horrific headaches from it. I was put onto an anti-depressant that also didn't work for me and I didn't want to repeat the experience for quite some while! Finally, I was put on to a low dose of a med called Sertraline to treat my anxiety ... It took a little while to get used to it and you have to be patient, but it's been the absolute best thing ever for me! I took far too long to admit to the GP that I was struggling ... I guess that you have to get to a point where you just throw your hands up and have to surrender! One size doesn't fit all ... I know that counselling is helpful to some and there are different avenues that you can go down and explore what suits you. You may not get it right the first time and it could take the odd fail, but you'll eventually find something that suits you and will help to make life easier for you. Diane, you've been brave enough to post here, that you're not coping and that you're self medicating with alcohol. It's the first step and I hope that your second step will be making the call to your GP. You will feel much better for biting the bullet and it's not as scary as you think. Sending you hugs and love.x
  38. 7 points
    Dear all Don’t know where I should put this but I’ve noticed that the replies I put on my thread thanking those who’ve taken time to write aren’t appearing. I’d hate for anyone to think I’m not grateful for their input. I know entries are moderated but I didn’t think I’d put anything inappropriate. So to all of you who’ve contacted me on the thread I’d like to say a big thank you. Sally
  39. 7 points
    I remember you joining Louise - I'd not long had my SAH and was in desperate need of support and advice - to think that you were already 7 years in when you joined is amazing - I hadn't managed 7 days without needing something or someone to understand. I do remember I was the 9th person to become a member on the wonderful site and it's gone from strength to strength. Louise, I'm so very proud of how you've come on - you may not feel it but you have grown in confidence on here, have given some very insightful and compassionate advice and have become a very integral part of this very special community. All that remains to be said is "Congratulations on your anni-versary" and it is a great privilege to have watched your journey and to count you as a friend xxx
  40. 7 points
    Hello everyone, Just found this site and it looks good. I had SAH nearly 5 weeks ago. Been home from hospital 10 days. Although I was warned about the fatigue it’s still worse than I thought. Just wiped out most of the time. Also been told I mustn’t fight it. I came home with a Zimmer frame but for the last five days I walk with my husband around the village just using his arm for support. No more frame 😊. I try and go a little bit further every day. When I get back after fifteen minutes or so I’m exhausted and need to sit down. Still get headache and neck ache and strangely enough earache. Still afraid it will happen again so no confidence yet to be on my own. Glad to have found this group.
  41. 7 points
    Hey there Firstly, yes you did survive and yes, it there is a point in it. I can tell from your post that you were the oil that helped your household run smoothly. I know how that feels, it was the same for me. I had to instruct/shout/scream at my hubby to do the stuff I should have been doing - my daughter was only 9 at the time and even then, she did what she could. The best thing I did, besides finding this website, was talk to my GP about seeing a counsellor/therapist. From the feelings you describe it sounds very much like PTSD and you do NEED to see someone to talk this over with. You're feeling guilty that you're putting your family through this, angry that this has happened to you and frustrated that you can do nothing about it. As for the weight - with you again - I put on a stone in a month as I couldn't continue my exercise regime - which was step aerobics three times a week, jogging and swimming three times a week. Acceptance at this time will be the hardest hurdle but is also your best friend. Accepting the "new" me was the only way I could move forward. Accepting that I needed to talk to someone impartial was the first step on a long, emotional journey. But remember, its a long road to recovery, but you're allowed to make as man pit stops along the way as you like. Please see your GP and ask for therapy or a counsellor - it will be a massive help to start your journey. You've stalled at the starting line but in all honesty, you really have done the hardest part of all - you HAVE survived. This life may be different and it's up to you accept and adapt to it and also ensure those around you are aware of the journey you have ahead and also how they can help you along the way. Good luck my friend xx
  42. 6 points
    Long time no speak everyone. Well its July 2020 and since my last message, the frequency of those mild, foggy heachaches has returned to normal. i.e. rarely. In fact, apart from the weight gain and potential damage to my liver from lockdown... I am doing fine. Whilst Covid-19 does not appear to present any increased risk to NASAH survivors (I'm perimesencephalic FYI) I am not taking any chances. Stay safe everyone!
  43. 6 points
    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.
  44. 6 points
    Thankyou Matt, I've just joined the group and what you said is exactly how I'm feeling. I had a SAH coiled in December. I look fine although headaches are often and I'm so tired and feel generally odd. Not back at work yet. But thank you. I'm just looking for support and stuff I think .
  45. 6 points
    Thank you all for your replies. Each reassuring and comforting. Again I’m not sure what I am looking for after this post ? It was more an opportunity to vent and share my frustrations. I hope no one thinks I have trivialised having a SAH? That was not my intention, I am struggling to accept it for myself, but feel that posting this may be a step towards helping. Again thank you so much for taking the time to read this and thank you for all those who sent a reply Regards Matt
  46. 6 points
    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!
  47. 6 points
    Hi there, sorry for not responding sooner!! My big news is I’m driving again!!!! The delay was slow due to no movement at dvla which will come as no surprise. Had to redo tests and get more letters from my doctors as dvla said my info was no longer up to date which I thought was a cheek as they had taken so long to respond. Sent more test results off (visual fields from spec savers in York - lovely lady did my test) and all quiet for another 10 weeks until my patience snapped and I rang to complain. I said it was unacceptable to to have all the information at your fingertips and not say yes or no. I had been waiting for months, lo and behold 48hrs later my licence dropped through my letterbox!! My visual fields had improved marginally from previous tests, I only missed 1 point in the central area on my last test. Do make sure you do the tests 4 or 5 times at a sitting as they do improve. No other health issues and I am almost back to normal. My short term memory is still not brilliant but I nearly feel like me again. It’s been a very long 26 months but to be mobile again is fantastic. It is easy to get disheartened but things can improve, just not always as quick as we would like!
  48. 6 points
    Hi Del, Welcome to BTG. The one thing about this site is that we are all survivors. We've all been in that seemingly hopeless place, but have come through it. The statistics do indeed paint a rather gloomy picture, but there is hope. When I was first admitted, my family were told to hope for the best but expect the worst. I was in a coma. I had to have a lumbar puncture and they were going to give up on me but decided to get in a top, top, consultant to give it one last go. On the third attempt it worked. Without that, I probably wouldn't be here today. My aneurysm was an irregular shape and they were going to coil it but thought they couldn't do it. In the end, the lumbar puncture was done and I was coiled. If it hadn't been for that consultant, they were going to do an operation going in through my skull, and I don't think that would've been pleasant or as successful. I am now nearly ten years further on and in good health, generally speaking. Sadly there are no guarantees, but that doesn't mean there isn't any hope. You can only be there for her, and hope she has the resilience to pull through, and provide the support she needs now and will do in the future. I think it will be true of everyone who reads this, that we are with you and hope for the best outcome possible, and that everything that can be done is being done. I wish you and your Mum well, and please come back on and post again if we can be a release for your pent up emotion and a support mechanism by lending you our experiences of what it is like to go through a Subarachnoid haemorrhage. Best wishes, Macca
  49. 6 points
    Hi Sarah, Well done for speaking up for yourself. In this day and age, it's a bit much not to expect you to do a bit of research on the net - why shouldn't you? The only answer to that can be is they didn't want you to know or cause trouble for them. In reality, what they should have done is told you at the time they found out instead telling you off. I would back up your complaint in writing if I were you, not just for yourself but to try and ensure others aren't in the same boat. And if the information per chance isn't correct on Google, then ask them to take action to have it put right. If it is right then they have no reason to be scolding you in the first place, unless they were prepared to give you the information in the first place. If they'd done what they were supposed to you wouldn't have felt the need to resort to the Net. Make sure you chase them up. Also copy them into a written complaint, then they know you are serious and hopefully they will fit you in. Whatever they do, make sure you keep making noises about it until they take action. ie make things happen and make them do their job. That's what I would do!
  50. 6 points
    I feel for you Greasly 23 My husband survived an SAH in May 2019, and although his recovery has been amazing, I know that he has to work hard each day to be here and to get used to his new self. All I can say is that Skippy and Macca and all of the other amazing and loving people on Behind The Gray have helped us both through, and continue to help us through. My husband and I are both just so incredibly grateful to have more time together, each day we celebrate being here together. But life gets in the way sometimes, meals need cooking, dishes need doing, there's mundane ordinary stuff. And it can get on top of us, and feel like a burden. I guess one of the ways I look at it is, "what can I control? What do I have a choice in?" Because you don't have a choice about recovering from a SAH, and how slow the brain is to heal and rewire itself, and the other side effects from pain and medication. But there may be things that you can control, that will help you to feel a bit better? I'm really pleased you can reach out for help and support on here, and please understand that even though you may not feel like you're very good company at the moment, your family and friends will still want to be with you. I'm sure they're incredibly grateful to still have you with them. xx Veronica
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