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Showing content with the highest reputation since 06/08/20 in all areas

  1. 4 points
    Macca... your words are so inspiring "sudden change foisted upon you, in a surprise attack that damaged you, but didn't finish you off... Carolyn amazing words from Macca, I am 3 years 4 months from my SAH and Vasospasm. What I wrote above from Macca is exactly how I felt, i was surprised (shocked) but it didn't finish me off. Carolyn you are still in the early days of this, I know you know that. I had no patience for the slow movement of my recovery and pushed hard to do some things that made me feel in control. I had this visual in my head thinking I wanted to see it in the rear view mirror...haha, I don't know why but that seemed to make sense to me. It has moved over to perhaps my side view mirror but it is not standing in front of me anymore. I will talk a bit about the fatigue, I simply must surrender to this on occasion. I find if I continue to push I start feeling a bit out of control of everything...I have made it a priority, sometimes I just need to sit down for half an hour, sometimes I need more. Dealing with it mentally has also been a slow process for me but I continue to learn to be good with myself. I did go for some mental health therapy and it was helpful...A good session of visualization makes me feel content inside...I practice at home now... I wish you the best Carolyn, please come and post whenever you need to or want to, we all share something here:) xx Jean
  2. 4 points
    Hi Carolyn, Great question. I'll answer from my own experience and I'm sure others will add theirs. firstly 6.5 weeks is virtually nothing in recovery terms. Months and years is more the order of the day. What I did, and it was completely wrong, in my opinion, with hindsight, was to set myself a goal of getting back to normal. What's wrong with that, I hear you ask? Well, what was 'normal?' In my head, It was back to being the old me, where I was the day before I had the 'event.' But then, that was all I knew. I realised later that was never going to happen. What I failed to realise when I woke up, was that this was the new me and was the new normal. I just had to find out what that was, and what it meant, for me. If you look at old photos of yourself, you see big changes in yourself that you took in your stride as they happened over time, almost without you realising. It was only when you looked at the photos you realised how much you had you changed and you probably had a laugh about it with your family and friends. At your haircut, your height, your weight gain or loss, your shoes, the car you had then as opposed to the one you have now. They all evolved over time. What you have now is sudden change foisted upon you, in a surprise attack that damaged you, but didn't finish you off. You survived, and what you now have to do is take stock of what happened, how much damage was done and try to adapt and get on with life as best you can. To put it into a context, think of any military conflict where a commander has insisted on a surprise attack and what the response was. The Japanese commander, Yamamoto, planned the attack on Pearl Harbor in WWII. They surprised the fleet there. The American response was to dust themselves down, assess the damage and set about repairing themselves ready to strike back. All the battleships were sunk, but they survived the attack and planned their return strike by using what they had left - the aircraft carriers! This might, at one level, sound absurd, but what I am saying to you is that you have suffered a surprise attack on your body, you have survived, you have to assess the damage done, and you have to find a way to strike back by getting on with your life, adapting to what you have left of your faculties, bodily strength, circumstances and so on. You will find what your new boundaries are by assessing what you can and cannot do. Those you find difficult you will delegate, or avoid, or change. but you will adapt. You will find what works for you. You mention several things in your post. This is how I look at them: 1 Your brain was attacked 2 You survived and got that 'wake up call' and still have your optimism (a great tool in these circumstances) 3 You recognise you are overweight so you have started to assess - now find the right diet and exercise regime with the help of your doctors - maybe that will help you get your 'mojo' back 4 You have realised recovery takes longer than you anticipated - so plan in the time to give you the space to do that 5 You have friends and family - use them to help you in your recovery - you will be surprised how many people will want to help - but you have to let them know you need that help - so tell them - all you need to do is ask! You can't live in splendid isolation all the time. Look on it as how much have you done for others - now it is time for them to give a little back - so lose any guilt complex you might have after being independent for so long. 6 Keep a diary and write things down - including progress and your assessment of where you are, what you need and where you want to be. review it regularly. Embrace the fact that change has happened, deal with it and move on. Learn from the past but don't let it rule you. It sounds harsh, but it is reality and like it or lump it, none of us can turn the clock back. yes you may need a period of recuperation and going through the 'Why me?' phase, but eventually we have to get on with it, so make the best you can of it. All our journeys are different in some way, so why not make it as fun and as useful as you can make it? You have a positive and optimistic attitude - that will make a big difference. Life is worth living, making a few adjustments won't change that in your case. I hope this helps, Best wishes, Macca
  3. 4 points
    Hi Ann So very sorry you have had to go through this all again, Bless you, what a nightmare. Thank goodness the surgery was a success, so very scary for you and your family. Well done on pushing for a scan in December. I guess with Covid etc everything is all delayed. I agree with you to fight for your yearly scans especially in these unprecedented times. Thank you so much for sharing and know that we are always here for you ❤️ Wishing you well with your ongoing recovery. Keep in touch and let us know how you are doing. Take care Love Tina xx
  4. 4 points
    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.
  5. 4 points
    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.
  6. 4 points
    With many thanks to all of those members who've made a monthly donation towards BTG funds in July and August. It's very much appreciated! x
  7. 3 points
    Hello everyone, My name is Ann from Calgary, Alberta, Canada. I had my first SAH December 10, 2010. My ruptured aneurysm was coiled. This site was very helpful to me during that time. I was grateful to know that I was not alone. It took me 10 months to fully recover and Behind the Gray has been my constant and loyal companion. Although, I was not an active participant I found comfort in knowing you were all in “my team.” Fast forward to July 16th, 2020 around 9pm, I was in bed trying to sleep. My 7 year old son came to the room and asked if I would watch TV with him. As I was getting up, I felt a sharp pain on my head and felt pressure as intense as the one I felt almost 10 years ago. My husband took me to emergency. I remember bits and pieces of that night. I woke up the next day in a hospital bed. Two doctors came to talk to my husband and I. It was the same aneurysm from 2010 ruptured again. The coils somehow detached. They were unsure if coiling would work again or if they have to put a stent. I was annoyed that they would discuss this in front of me. It made me really scared that I might die. I was sad that I couldn’t even hug my son before I go to surgery. Only 2 designated visitors are allowed per patient and no children younger than 14 because of Covid. Thank God the surgery was successful. They had to put 4 new coils. There’s a discussion of putting a stent 4-6 months from now. I have mixed emotions about this but if it needs to be done I’m all for it. I go back and forth to wondering why? Why again? I vividly remember asking my Neurosurgeon in 2010 the likelihood of this happening again and he said it’s unlikely. I had scheduled CT scans and MRIs every anniversary after my first SAH. In 2016, it was cancelled for some reason. It was rescheduled for 2018. I believe because of budget cuts. I urged my family doctor to book me one and it’s scheduled this December 2020. Would they have seen the coils falling off had they kept my scans? I guess we’ll never know. I wanted to share my story and hope it might help someone. I wish I advocated for myself more to have the yearly scans. Knowing what I know now, I will definitely fight for it. Thank you for reading my story and thank you for keeping up the site to support all of us. It means a lot! ❤️ Ann
  8. 3 points
    Hi Ann sorry you had another bleed hope you have a speedy recovery xxx
  9. 3 points
    Hi Carolyn, I didn't find out about the driving thing until my first appointment with the stroke nurse, well over a year after. Although I had a licence I wasn't feeling well enough to drive even by that point and so hadn't looked at the info here or realised I had to let the dvla know. Oops! They were nice about it and I did get my license back but I've lost all driving confidence (never high in the first place) and still haven't driven. It made job applications tricky but I now just say I don't have a licence! As for the fear/anxiety I definitely found the counselling help. It has given me ways to break out of the thought pattern that every headache is a new bleed but it is still there to some extent. I do get anxious when I get a bad headache out of nowhere in the same area that hurt at the time, I can handle headaches that build but the ones that sneak up on me unawares or that I wake up with do still cause a bit of panic, which of course increases the pain. This is also where the counselling came in useful. I have a mental checklist of things to check and should a certain threshold be reached I have a plan of action... The fatigue and mental woolliness have actually been harder the learn to live with, and I do still tend to over do things on some days and pay for it for a lot longer afterwards but I'm gradually learning to both pace myself & to not beat myself up when I over do it. Fluids, rest & listening to your body are essential but so is asking for help when it all gets too much. take care
  10. 3 points
    Hi Carolyn, Remember fluid is in foods too, so it doesn't necessarily mean just water. Tea and coffee, fruit juice,milk etc is ok. There is also water in melons and cucumber, fruit etc etc. Just drink small amounts regularly throughout the day, as well as taking in foods that contain water. Time is the great healer in this, and everyone is different in this regard. Resting well is as important as exercising well, but get the advice of your own doctors before embarking on any exercise regime. Doing what you want to do, and what you need to do, are sometimes very different things and doctor knows best! Also listen to your own body and stop if and when it tells you to! All great advice above, I hope it has helped you. Mental support is vital, and we all benefit from sharing experiences on here. If you are on your own, don't let things build up inside you, or let your imagination run away with itself. You (we) need to balance our own thoughts and you do that by talking to others who know and understand what you are going through. that is why this site is so valuable. You come across people who have the video and the T shirt, so to speak. If you feel you need to talk, come onto the site and say what you feel, tell your problem and someone will answer you. We just can't give medical advice that's all.
  11. 3 points
    Hi Carolyn, I had my SAH in December 2017 but wasn't diagnosed until January 2018 and only had 1 night in hospital (I'm not sure my experience is typical in that respect. I only went to hospital after the 2nd thunderclap headache where I had a clear CT scan & lumbar puncture. It was only after the 4th thunderclap that I was booked in for an MRI and then that didn't happen until after the New Year holiday). I was discharged from hospital after the one overnight stay with no advice and painkillers/anti nausea meds to last 3 days. I made an appointment with my gp to get more drugs as the headache was still there & got prescribed amytriptyline. After seeing the neurologist in Jan 2018 I was given no more advice and wasn't told I had to let the DVLA know. I still see my neurologist (waiting to see about the appointment I'm due now) but have definitely had more info from here. At the last appointment he recommended a change in dose of medication via the GP and they wouldn't do that until his letter arrived with them, but even when I received the copy I had to chase with them for an appointment. My GP practice does insist I see the stroke nurse annually, although this was due on 23rd March and reasonably got cancelled. I've not been contacted by them to reschedule or have a telephone/video appointment. While no medical advice is given here on BTG I have definitely found the support and non medical suggestions for coping more valuable than anything anywhere else. The importance of drinking enough water/soft drinks is the best thing I learned here as is the message that it is okay to not be okay and that progress/recovery is not linear. It is also reassuring to know that on here there is likely to be someone who has had a similar journey who can reassure you. I finally realised I wasn't coping mentally about 18months after the original event and did reach out to the local mental health team. I received some great help in learning to process the event and help with the stress/anxiety/ptsd I was diagnosed with. I wasn't referred by the gp or specialist tho I did it all independently. So in short your experience with follow up care does look like mine pre Covid, but I had an unusual journey to diagnosis & not a long time in hospital. Take care of yourself and keep asking for help/advice here and with your medical team Sarah
  12. 2 points
    Hi Carolyn I too am a get up and go person and to put it straight I have struggled. Like you I had a NASAH with no physical deficits but the mental toll has been huge. I have gone from being a high functioning individual to someone always questioning my judgement and ability. Changed my job 3 times since bleed and reduced hours from 41 per week to 22. Fatigue is much better now but memory still bad - I appear to have lost the ability to pay attention and therefore often can't remember what I have done 5 minutes ago. My saviour has been my neuropsychologist who has nursed me through the last 4 years - metaphorically speaking. All that said though, I am physically fit and regularly run 15 miles over a week, physical activity isn't a problem. You are so very early in your recovery - take it slow and steady and you will in time find your new normal. To be honest I'm starting to accept mine at last - I think Clare xx
  13. 2 points
    Hello Ann, Sorry you had to go through this twice Ann, that really is unfortunate. I remember my surgeon telling me that over time coils can compact themselves under their own weight, but that 'it was as rare as hens teeth' was how he phrased it. So you really have been unlucky. The good news is that you survived. I would certainly go looking for answers, if only to understand what happened. On the positive side though - you survived. I've never heard of it actually happening before, but I knew it was a possibility from something I read once. Thank you for sharing! Best wishes, Macca
  14. 2 points
    Hi there is there anyone who can tell me how much medical support to expect normally post NASAH in the UK? i had mine end of June 2020 and reading posts on here I feel I’ve had little support - maybe becos of Covid? I called my GP 4 days after discharge from 5 day stay in hospital. They didn’t call me despite having my discharge notes. I have had 2 x 10 min phone consults from the GP and tho he is very nice he’s told me SO little. The hospital just said go home and rest An 8 week FOllow Up by hospital neurologist is not confirmed because....“we don’t know when as we are very behind because of Covid” said the appts lady. i recently learned I’m not supposed to drive and need to inform DVLA - from this site not medics i also read on here I should maybe be drinking 3 litres fluid per day what else don’t I know or should I be doing/expecting support wise? Has anyone had any support for anxiety or psychological impact? thanks for being here :o))
  15. 2 points
    Thanks Skippy i fully plan to live freely - I’ve no intention of being defined by this but I guess it’s early days although tbh I thought I’d be back to normal by now!!! Lol silly me! thanks for the inspiration and wise words x
  16. 2 points
    It is a legal requirement to inform DVLA regardless of what you may think. See the DVLA site https://www.gov.uk/brain-haemorrhage-and-driving Your insurance will be invalid if you haven't informed them of the SAH. Not worth the risk. Sorry to seem harsh but the law is the law.
  17. 2 points
    A letter from your brain Hello, I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That’s why I need you. I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don’t shut me out. Don’t tune me out. When I’m getting into trouble I’ll need your help more than I ever have before. I know that you want to believe that we are going to be the same. I’ll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can’t fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse… I’m scared. I’m afraid that you will do that to me. If you don’t accept me I am lost. We both will be lost. How can I tell you how much I need you now? I need you to accept me as I am today… not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It’s as if here is shame, or guilt, in being injured. Silly, huh? Please don’t be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can’t say how far. I won’t make any false promises. I can only promise you this, that I will do my best. What I need you to do is this: because neither of us knows how badly I’ve been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I’m trying to get your attention in the only way I can. Stop and listen to me. I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you. I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same… you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don’t want to die, and I don’t want you to die. I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don’t want you to give up. Don’t give up on me. Don’t give up on yourself. Our time here isn’t through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn’t easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don’t care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that. Don’t be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don’t reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now. Love, your wounded brain ©1996 Stephanie St. Claire May be reprinted for personal, not for profit use.
  18. 1 point
    Hi it’s me again - sorry to bombard you all with questions! I’m now 6.5 weeks (not that I’m counting lol) post a NASAH. I have no side effects physically so feeling very lucky. I am finding the speed of recovery a bit challenging as I’m a get up and do person and sitting around isn’t really me. I have however become best friends with daytime TV (arghhhh!) as I simply can’t sit and do nothing. My question today is how you managed with this whole thing mentally. I don’t mean the anxiety attacks that wash over me unexpectedly but the whole thing about what just happened to me, what the future holds ie will I get back to normal? And how I regard the future. A friend asked me if I had had an epiphany moment....a phew that was close I’d better get on and live fully going forward and make most of my time. I said I was as deep as a puddle and no I hadn’t really. Thing is the fatigue means I’ve lost my mojo a bit. Although if I’m truly honest I think I lost it before the ‘event’. But the event should really be a wake up call!! I need to lose weight (about 2 stone would be good) but have battled with that all my life so why should this make any difference? I need to change my thought processes whilst recognising that this recovery could take longer than I ever imagined.... I imagined about 3-4 weeks tops cos no one told me any different lol - ever the optimist me!! I’m sure the answer is pace yourself, be kind to yourself and just focus on recovery but for me part of recovery is this whole mental thing too. What did you do? Did it work? Any ideas or tips or thoughts much appreciated. Onward and upward Cx
  19. 1 point
    Thank you, Jess, Tina and Macca. I was so looking forward to my 10th anniversary and this happened. Truly a shock but again I’m grateful for my 3rd life. 😊
  20. 1 point
    Headway has a branch in London. https://www.headway.org.uk/supporting-you/in-your-area/
  21. 1 point
    Thank you for replying so fast, i would like to know are there any support groups in london i would be able to connect with?
  22. 1 point
    Hi, sorry to read that you have no motivation to get back to your pre SAH fitness routine. The effects of brain trauma are so varied. We have many members who have slowly rebuilt their stamina in an effort to regain their fitness. For some the motivation is there but the body and brain are unable to deal with high levels of physical exertion. One year on is still early in recovery terms. How are other factors in your life such as work, dealing with the family and coping with inter personal relationships with family, friends and work colleagues? Perhaps you could tell us more about your SAH in the Introduce Yourself Forum. Meantime this link will provide helpful reading on exercise post SAH. https://web.behindthegray.net/search/?&q=Exercising&search_and_or=or&sortby=relevancy Please keep in touch and don't hesitate to ask any questions as all our members have faced the challenges of living after SAH. Subs
  23. 1 point
    Hi Every one, I had a brain Aneurism on 8th august 2019, its been a year now and i have had a coil and stent put in place, i used to work out twice a day and jog 4 km a day now i cant find any motivation to jog or get back in to any form of exercise. is this normal ?
  24. 1 point
    Oh no not harsh. Sound advice im not driving either!!
  25. 1 point
    Thanks guys Very lovely to hear from you. at least I don’t feel it’s simply a Covid thing! spoke to GP today who is chasing the consultant neurologist who saw me to see if I can get to chat to him As my out patient appt could be months away! Driving - GP says he thinks I’m prob fit to drive. Will await official confirmation but won’t advise DVLA because I’m OK again so why tell them? Like many I’m still struggling with realisation this isn’t going to be a quick fix - can’t get my head round that! Anxiety - hmmmmm that usually becomes more startling as I tell people and experience their “**** that’s serious” reaction! And putting that with the general fear it might happen again..... When did you start living more freely and less like a recovering person? How long after the event? And what sort of mental support have you found useful? Thanks again onward and upward
  26. 1 point
    Carolyn i believe if you have had a bleed you do have to inform the DVLA by law. You will need to get a letter from either your Consultant or GP to say you are well enough to drive. Here is the link for information on returning to driving. https://web.behindthegray.net/forum/23-driving-after-sah/ Loving your attitude onward and upward xx
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