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Showing most liked content since 20/03/18 in all areas

  1. 8 points
    All, Tomorrow, April 9th, will be five glorious years since my brain pop. Just kidding about the "glorious". My birthday is April 7th (every year!!) and as happy as I am to be alive and celebrate it, the two days after feels so much more compelling and powerful. It happened to me and I can say it did. I feel I can breathe quietly and calmly ( two words that typically do not describe me) because it has taken five years to feel "safe" again. In the beginning I simply wanted to feel better. My goal was three months, then six months, then one year, then two, etc... You get the gist. I push forward and now at five years I will look for another five years and push forward. I will always have goals. It helps. I will not say I'm glad this happened and I am 100%. No, no, no, I've come to terms that I will NEVER be the same person and that's okay. I wrestled, I fought, I cried, I threw temper tantrums, and quite frankly it just make my head hurt worse. Some things in life you must do alone, even with others around. Struggle and achievement. I struggled for a long time trying to maintain an image of who I once was and should be but it is exhausting. It has been difficult, it has been challenging, but through it all I found that I'm pretty darn resilient. My momma made me that way. I am not as afraid as I once was. Yes, I still have headaches, dizziness, and weirdness in my brain but I have learned to manage it and I go on. That is the hard truth, we must go on and persevere. We all must face what we must face with that strength you did not know resided within. Mix that in a bowl with faith and hope and you have created a very powerful force to be the person you need to be. Thank you all for your strength and encouragement these past five years. It is now my turn to help the "newbies" see there is a new day approaching. iola
  2. 6 points
    Dear All Thank you so much for your lovely comments. I read your warm comments to my family members and they are sending you their best wishes. I have just visited my mum. I told her my day. I told her that everything is going normal, weather is cold, I truly miss her and love her, it’s time to wake up and I will be back tomorrow. She is in stable condition (blood pressure normal, oxygen saturation normal, pulse normal). We are praying for her to gain consciousness. All the best, Umut
  3. 5 points
    Well, I got a provisional licence which allows me to practice before I have my assessment in May (or even earlier if I manage to get a cancellation!). I was out on the roads last night with my wife and a set of L Plates! 40 years driving this year and back on L Plates! It cause much laughter in Halfords! It was great to be out there again and it felt like I had never stopped driving. However, I am very conscious of the areas of my loss of vision. This is a good thing as it makes me more careful to make sure that I am compensating for that loss.
  4. 5 points
    Hubby is now six months post PASAH and I must say improving all the time. Monday we go on our week to Tenerife for a bit of relaxing and as you know his SAH happened whilst away in Cyprus so this will be a major hurdle to overcome especially for me. He says he is not worried at all. I am so glad I found this site as it has really helped me and my hubby. He is literally back working full time and we are managing to get back out to some level socially although not evenings.
  5. 5 points
    Our trip isn’t going too bad although I’m very nervous of things still. Last night hubby woke up feeling bloated from basically too big a dinner and I was a nervous wreck thinking it was worse as his PASAH happened after we’d gone to bed on our trip to Cyprus. We are literally using this as a taster for future trips
  6. 4 points
    Hi Iola, Congratulations on reaching this milestone - very well done. I remember when you first joined us and what a struggle you had with doing ordinary things! Now look at you! You are reflecting now with the benefit of a hard earned wisdom, learnt through hard experiences, and by listening to others who had been there before you, and by realising yourself that you had to change and adapt. The problem with change is that is was forced on you rather abruptly when not only did you not want to do it, you resented the impact it had on your life and rebelled. Nevertheless, you got to grips with it and you realised that you needed to do it and your body was telling you that you had no choice - and like everything else in life you do it to the best of your abilities with style and elegance and your family reaps the benefits of the new you. Yes, you can look back at life like you do in an old photograph album - but that is also who you were, not who you are. The experiences you look upon in that album made you the person you are now! SAH is just another of those experiences (albeit one of the more serious and unpleasant ones). That's how I look at it now and I will continually look forwards. I only look back when I feel nostalgia - I've made that place in my mind for those moments, but then it's time to shut the album and get on with life as best I can! Well done Iola - you are a credit to yourself and your family. Thank you for sharing this with us all.
  7. 4 points
    I am hoping this would be the correct place to put this. I learned about the book "A Dented Image" by Alison Wertheimer on this site. I was able to get my library here in the US to locate a copy. As I read this book I could see some of my experiences easily, my thoughts and my fears here in print in front of me. I have found it eye opening and comforting. I have searched for a support group but with no luck. I have been told twice that the groups really don't have patients like me??? So I am going a different route and reading. When i first started my reading was very slow and tired me but I am getting faster and I really like only reading perhaps 20 30 pages at a time so I can ponder on what I have read. I would never have come across this book but for this site...Thank you Jean
  8. 4 points
    Dear Karen and Tina, Thank you very much for your warm and kind support. Today is my mom’s 18th day at ICU. The doctors cut sedatives on March 15th. Since then she has been sleeping on her own. She has been breathing on her own with very little respiratory support. All other bodily functions are normal. She is still unconscious. Tonight as everyday I will be visiting her. Last night during my visit, I got the impression that she slowly - exerted some effort- pulled my hand on to herself (i have no idea if it is reflexive or not). She is showing basic signs of instinctive bodily reflexes. During my visit I tell her that I need and love her, I know that she hears me but can not be able to respond. I will be there for her everyday, she looks great and relatives and her friends miss her and it’s time to come back. Kind regards, Umut
  9. 4 points
    When I first came to the site in my early days, searching for answers , permanently fatigued and rather hopeless I was confused by Keith and others in the green room offering up a spoon or two, what were they on about. Anyway I soon was enlightened to this great analogy which helped me and others understand my daily choices so think it worth pinning here The link to her site and this story. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
  10. 4 points
    Dont worry win im always singing.im from wales
  11. 4 points
    Hi everyone, Thanks again for everyone’s support. It is with much relief I can say that by insisting that I know know my own mind and body and understand my issues that I have managed to convince the occupational therapist and exercise rehabilitation expert that I don’t actually need their help. I’m not saying that I have a closed mind and blank refusing their expertise and as I have said to them I should’ve had this support the minute I was discharged from hospital and not left to my own devices to figure it all out myself. I have politely acknowledged their expertise and willingness to help without giving the impression that I’m a belligerent old fool. It’s a case of don’t call me I’ll call you. They have all admitted that i’m obviously not a couch potato and intelligent enough to have got through to here and pleased with my own progress. Yesterday I was left with some information about Pacing and Dealing with Head Injury which I could have written for them. It took them 11 months and 34 days to get it to me. Anyhow it is also by quoting what many of you have said in your communications, which none of these people have tried to discredit, that has also added credibility to my insistence that they’ve offered too little too late and I’m as well as I can be. My GP was very good last visit and acknowledged he has seen progress and support that he wouldn’t insist that I do something that I’m not happy about even though he thought I might be fit from exercise programme. Looking forward to getting on my bike and dawdling down our local riverside paths before winter in NZ. Also will mow the lawn for the first time in a year, I’ll try not have my tongue hanging out and make like I’m driving a tractor topping a paddock before the cows go in!!!! Anyhow thanks again everyone and good luck with recoveries.
  12. 3 points
    Oh WOW Thank you so much .....it has taken me some time to find these replies and I am so happy that I did. I am coming up on year 2 after my bleed and life is still different and for the most part I'm ok with that. I am Thankful to be a live and Thankful to be improving as time goes on. I still have headaches some bad and some not so bad. Since the bleed I have been back to the ER twice scared that I was having another one to find out that it was just a migraine that I could not get under control. I am truly hoping as time goes on the fear will continue to get less and less. However some nights when my head hurts I am afraid to go to sleep because I'm scared I will not wake up. After reading these post I do feel better because this is the first time anyone had said they had one without surgery too. So THANK YOU again Melissa
  13. 3 points
    Hi Pat I have a sister named Patricia alias Patsy xx I used to get itchy head after my shunt woke me up so I decided to bathe it in warm salt water as my Mum used to swear by it. It does go but if it worries you see Doc. Sounds like you have done so well, I was told I'd never walk again but 250 yards then back aches on a good day!! I have had Epilepsy since puberty but noticed they had got stronger after SAH so Specialist upped pills and been seizure free since new pills in Feb. Touch wood !! Horrible things xx We are in it for the long haul but you will get there and some days you might feel so tired and another day you can take on the world. Then pay for it the following Day xx Keep happy and stress free as we are survivors and welcome to BTG and others might tell you to drink water listen to them xx Do not listen to others problems just be happy and think about the times you have laughed so much, it really helps. Wishing you all the best and Welcome to BTG xxxx Now a smile please xx
  14. 3 points
    Maria, just be aware that all our thoughts are with you and we wish you all the very best on your journey and hope that you get as much as you can from it. Macca
  15. 3 points
    Thanks for the detailed answer Macca, it looks like you read my mind (not sure if that's good 😁) I was counting on checking with his family (I'm staying at a hotel but I'm always asking for updates and I have made sure they know when I'll be there and my hope to make it count). I'll be honest and won't say I'm not overthinking because I am and have been these last days, but don't worry because I have no hopes on the outcome. I have got myself used not to expect anything good after this year, and keep writing some words to Paul every day (5 notebooks already and counting) telling him how he was on our call and how I feel, pointing out those little things like when he says my name,or how he is himself.. Yes your words always help, one way or another, so thanks again, I'll update when I get back Maria x
  16. 3 points
    Thanks for your wishes Louise, What I meant (with my English being not my first or second language, thanks for the patience there) is that he has been in a center for more than half a year, not being aware of where he is, just making up the answer every day when I call (usually he is working, sometimes at a wedding..) so he doesn't have a phone, nor his money, his case, his home.. That's why I asked now I'm able to visit him again Maria x
  17. 3 points
    So good to hear from you Iola and congrats on the 5 year anniversary! You've made great strides along the way. Moving on to the ten year mark myself and you are very correct- we are never the same as we were before. However, the BTG site is excellent proof that we adapt brilliantly. You go, girl!
  18. 3 points
    "Some things in life you must do alone even with others around" This statement is so very true. I have come to realize that no matter how much anyone wants to help or understand it is my journey. Congratulations on 5 years. This has truly been my only form of therapy, reading other's journey. As I approach 1 year I am seeing there is a new day approaching and part of the reason I am seeing it is because of people like you who stop and take the time to send words of wisdom words of hope.. Jean
  19. 3 points
    Hi Iola, I can remember when you first came on here and we spoke about shunts etc. You are a lovely person and sooo sensible (Unlike me) lol. Well it wouldn't do if we were all the same. Glad you are over the 5 year mark as it takes us that long, as for tears and tantrums still get a few of them every so often lol Love Win and the next Anni versary xxxx
  20. 3 points
    Hi Umut (please, call me Sami ) I'm glad that you talk to her - I do truly believe that we are heard. You're doing great and are definitely a credit to your mum - she'll be very proud of you.
  21. 3 points
    Hello Areajay and also a warm welcome to BTG As everyone has mentioned... it is very early in your mother`s recovery. As the weeks and months pass the issues resulting from her SAH will become more apparent, Some will be more temporary than others and the healing process will depend on the severity and positioning of the bleed. So it will be fair to say that even the medics and consultants cannot give you definitive advice on what may occur in the days and weeks ahead. You are right in feeling positive from the fact that she seems to be coping well so far given what has happened. Confusion and memory loss is a normal experience in these early days. Given that she is `fiercely independent` this can only be a positive factor in her recovery. I do hope that you and other members of her family are coping well. The strain of seeing a loved one suffering from SAH/ NASAH whatever the age, can also take it`s toll. Keep strong by resting well and eating well. You may also find the Carers Forum a great help. Subs
  22. 3 points
    Areajay, welcome to BTG. I had dreadful nausea, so much so I was readmitted to hospital for a couple of days. It turned out it was the medication I had been given. Your mum is in the very, and I mean very early days of recovery and confusion is something that most of us suffered as is short term memory loss. Many were affected in other ways too. To help with her balance problem ask if she can have a stick and enquire about her having physio. No recovery is the same and a time limit can't be put on it. Make an appointment to see those doctors, write down all the queries you have as you think of them so you don't forget anything. Don't discount questions that you may think the doctors will think stupid. They are medically trained and you are not as neither are we.
  23. 3 points
    Hi AJ Sorry to hear that your mum has suffered SAH, you have come to the right place for help, support and advice, you will find a wealth of information here. Everyone's recovery is different but the things that seem to be very common with all of us survivors are feeling very tired, fatigue is one of the big side affect of SAH, making sure that your mum gets lots of rest when she feels tired will help, Also some people suffer with headaches, staying well hydrated really does help with headaches. Your mum's brain and body have suffered trauma and they both need lots of time to recover, there are no quick fixes and it does take time, she will still be able to do things, just maybe a bit slower than before, take one day at a time, also make sure that you look after yourself too, there are a few members who are carers and I am sure they will be along to give you some advice and help you with caring for your mum. Have a good look around the site AJ , hope you don't mind me calling you AJ, there are a lot of helpful threads, you will get a lot of friendly advice and make a lot of new friends along the way. Wishing your mum and yourself well as you start your recovery journey together. Let us know how things are going, we are all here to help. Love Michelle xx
  24. 3 points
    Hello AJ Sorry to hear about Mum, I was 63 when I had mine and I remember just falling and shouting" help me". My memory has got a little better but still I forget what was said to me 1/2 hour ago. Now ask me what happened 20 years ago I know it all, but short term memory loss is part of SAH They asked me where I lived I couldn't remember so hubby wrote it on wall and every day he'd cover it and ask me "Where do we live Win?" I'd ask for a clue lol. As I was still living in our first house where we moved to when first married. We moved from there in the 80's. Keep notes up for Mum and it gradually gets better and remember to laugh with her as laughter is a good help to recovery xxxx No stress for Mum and songs she likes are a must. Good luck to Mum and You xxxxx is it okay I call you AJ ?
  25. 3 points
    Dear friends, Thank you for all your well wishes. I try my best to take care for myself. We are waiting with hope and we are praying for her consciousness to return. I very well know that my mum is somewhat lazy but a strong character and likes sleeping for longer hours. The doctors don’t know that. Thus recovery process may take longer compared with other patients. All the best,
  26. 3 points
    Hi Umut I think you are doing all the right things when you visit but it is must be very emotional for you but remember you and your family know mum best. THe doctors will of course be following medical teaching and experience for how she may recover but you will see what you know too , her colour, her nails etc, and if mum is a fighter. If she had a tear fall on response to you or pain then that may be an indication she is trying to respond , equally if you feel some slight pressure but of course it is so hard to be certain. Are both her eyes closed? Can you see any of mums eye movement at all ? I’m sure you will have tried this but see if can she blink in response, that can be something that helps if she is able, even a flick of an eyelid. One for yes etc. It is possible if mum is breathing unaided now and bp is Stable then it could be she is severely limited by the effects of her significant bleed and it is preventing the bodies ability to respond. Just suggesting this to you not to upset you further but only because just recently a friend of a friend had a similar event and her family was being told there’s was little hope , but once they found a way to see she was trying to communicate she has gone on to make solid progress. In this case they diagnosed ‘ locked in syndrome’ post her stroke but talking to her throughout and letting her know they still saw her there made a big difference and now she can communicate better and is no longer locked in she has been able to thank them for doing that. As we have said everyones different thats whats so hard but im sur3 mum feels your love, even when I knew nothing , not where I was or who I was I still could feel love and it makes a whole lot of difference I promise you. get some rest Umut (that’s the mum in me again) , tomorrow is another day
  27. 3 points
    Hi Pat Welcome to BTG - it is an awesome website, I have to agree. I'm 12 years past SAH this year and I've been on this site since I was 3 weeks past SAH. I wouldn't have been able to get through those early months and without this site and I have met some of the wonderful people on here along the way. This is an amazing support system, and yes, it's great to talk to people who do actually get it rather than sympathise. I hope you continue to recover well xx
  28. 2 points
    Umut, You are being a good son and Mum cannot ask for anymore. She needs her Family more than ever. All the best for Mum and remember yourself xx Kindest regards to Both of you and I do hope Mum improves, take care yourself also. Win xxxx
  29. 2 points
    Hi, I was 64 when I had my NSAH.. it is different from any sickness that you may have experienced in your life.. Time...time...is what you must keep remembering. Her brain suffered a big blow. There are so many great folks here...please read what others have wrote.. Write down things you want to ask the doctors as you think of them and always end the conversation with "if I think of some other questions how can I reach you"... I hope your mom is up being herself soon... Jean
  30. 2 points
    Hi Umut, How is your Mom Nug today? I truly hope that she regains consciousness soon. It sounds as though you and your family are doing all of the right things with playing messages of family voices that are familiar to her. Tough times for you all, but it sounds as though Nug has a lovely supportive family around her. x
  31. 2 points
    Umut The answer is very difficult, its a very difficult thing to answer as every patient is different . There is no one size that fits all. It is the same as asking how long is the piece of string. Doctors err on the side of caution I believe and I hope mum will wake up when she is ready. Put your hand in hers and ask her if she wants to come back and to squeeze your hand if she does. All you can do is wait and its a horrible time and so much will go through your mind but all you can do is be patient and wait. It can take another three weeks , nobody knows for sure but taking one day at a time would be the ideal thing to do. Be there for mum , squeeze her hand , talk to her , and tell her you all love her and you want her back. It is a shame no one is the same as each bleed affects people very differently and there will good days and bad ahead and we can only hope and pray mum shows signs she is aware. All the best Paul
  32. 2 points
    Saw a patient again who had SAH in 1997 at age 33. No procedures. She fell off the radar due to lack of insurance. But I see her parents all the time. She said she heard a pop in her head and had the worst headaches of her life. Was in hospital for 12 days and had visual problems and headaches for a few more months. She now works in her own office since she can’t tolerate noise. I'm sending her back to neuro who are hard to get in. Now just have dizziness . She was told she was one in a million and that she was very very lucky per her doctors.
  33. 2 points
    Hi Jill, welcome to BTG, glad you found us and are finding the site useful Sorry to hear you had a NASAH but glad you feel you are recovering well. You have done well to have had a good long stretch off work - there are some good employers out there! I was initially signed off for 3 months after my Nasah and started my phased return shortly after then. However in reality that was too soon and I think 6 months would have been more appropriate. Unfortunately my employer only paid me for 3 months and as I am the main wage earner back to work I went. After a long series of events and job changes I have now settled for working 30 hours over 4 days a week. I have Wednesdays off to recoup mid week and still need it after 3 years. You may well find that noise may be a problem for you so you will need to take that into account. Have you considered just doing a few hours for a couple of days a week and see how you cope? Take it slowly, don't rush back. Make sure your employer understands what you have been through and how it has affected you. Hopefully the neck pain will diminish in time if it doesn't make sure you speak to your doctor about it. My neck was sore for some months after but is fine now unless I am tired. Good luck, keep us posted. Clare xx
  34. 2 points
    Mike, as has been said, nothing is set in stone and one person's recovery will differ from the next. Age, health, fitness, severity of bleed are all factors that must be taken into consideration. I was 35 when I had my bleed. For ages I felt like a fraud on here as I was walking two days after my operation and back at work 3 weeks later (although sleeping during the day). A bleed is a bleed, we are all on the same road to recovery, it's just that some of us will reach the destination quicker than others, but this doesn't make it good or bad. Encouragement and support are the things you can give your mum right now. The brain will take far longer to heal than other parts of the body as it never truly rests. Plenty of fluids and rest when needed are good things to remember.