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Showing content with the highest reputation since 13/06/20 in all areas

  1. 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!
  2. 6 points
    Hello Dramblys Like you, I haven't been on BTG for a long time, and also saw Sarah's post about Win's passing. I am so very sad for her, and her family. Win was such a beacon of hope to so many, with her funny, gracious posts and her generous heart. She was one of the first to respond to my first post, and I will always be grateful to have known her through BTG. My husband had a non aneurysm SAH just over 12 months ago. Like your wife, he has made an amazing recovery. However, he has also endured the typical chronic headaches, and even though they have improved, they are ever present and get him down at times. He now runs over 15km a week, and cycles over 100km a week. Exercise has given him meaning and direction each day. We still don't know if he will be able to handle the demands of returning to his job as a coal train driver, we will find out soon. I have gone from working 2 days a week to now working full time to alleviate any pressure on him to feel he has to work. He now focuses on providing more support to our two teenaged sons so I can work. Brain injury is an invisible disability. Our loved ones endure a silent and hidden experience, and the changes to their brain function and behaviour can be finely calibrated, hard to detect in a shorter social conversation, but more obvious over a longer period of time, such as living together. As partners, we do tend to be the people that continue to understand the experience of the survivor, as other people move on and forget. It's great that you're seeking support on BTG with people who understand what you and your wife are experiencing. I'm not sure what to say that will be helpful to you. I am in agreement with your wife though, I really don't like to have difficult conversations after dinner, as they also tend to unravel me, impact my sleep, and carry over to the next day if we can't resolve them. Us ladies can be a bit complex!! And yes, what you thought was a simple conversation can be more complicated than you expected, I agree. I wonder if writing down a summary of the conversation you want to have, and leaving it in an in-house 'mail box' that she can check when she feels ready to cope with the content would be helpful? That way, she can control when she wants to deal with it, and choose a time she feels able to follow through the process. Of course, any in-house mail would have to be balanced with love notes or other positive stories, such as memories of pleasant experiences you have had together, holidays you went on etc. Otherwise, it would just become 'difficult' mail and she won't want to read it, who would?. It's just an idea, see what you think. I do wonder if giving her control about when to have discussions will reduce a 'reactive' response and give her time to prepare? I agree with the advice Win gave you previously, our loved ones who have survived SAH feel things so deeply; they have met death and survived, life is so fragile, and they know their own impermanence. In that regard, my husband gave up caring about or responding to things that previously would have bothered or irritated him. He just became very zen, and wanted to focus on being in the moment, and letting go of judgement, grudges, differences of opinion. He doesn't tolerate people who are self involved and neurotic at all, he never really did, but now he just doesn't want to have anything to do with them. He's quite blunt about it, I understand as it is self protective. I guess in regards to Win's advice, finding friends or family, or a paid professional, who can provide some of the listening and emotional support you are seeking is really helpful. It is natural, normal, and necessary for us to need to be able to express our own pain or doubt, or to be really heard by others. Our loved ones who have survived SAH just can't handle things the way they used to. There will be times, like you have noticed, that their perceptiveness and insight will touch you. But I think they have more to deal with than us, they are living inside their bodies with their brain injury that still lingers and reminds them daily of nearly dying. So we need to alleviate them of some of our expectations and needs. Unfortunately, it does change the relationship dynamic, but no one is unchanged after what they and we have been through. Change is inevitable. There is grief, sadness, sorrow in what has been lost for both of us, and life goes on. Finding ways we can connect, that bring joy, tenderness, and celebration of being alive together, is maybe what we should focus on? And deciding to change our expectations of the relationship, being kind to ourself, and kind to our partner? What do you think? Veronica
  3. 5 points
    Hello Sarah I have not been on BTG for many months, and this is the first post I have read. I have been dreading reading such news of other BTG members. I cannot express strongly enough how precious and beautiful your lovely mum was. Her replies to my posts gave me hope, they made me smile, and helped me to be grateful every day. I could always imagine her singing at the top of her voice with gusto! As you well know, Win shared her sunshine and wisdom so generously with everyone who stepped through the virtual doors of BTG. I am very sorry you have lost your mum, especially under such trying circumstances and not being able to be with her. My dad also died suddenly of heart failure nearly 10 years ago, he was alone at home, 1200km from me, it was a huge shock at the time. Sending lots of love and hugs of comfort from Australia to you. xx Veronica
  4. 5 points
    Sarah, I am so sorry for your loss. It's been about 2 years since I visited the forum, and then only for a short time in the early days of my wife's SAH recovery, but I immediately remembered your mother as soon as I read your message. She was among the first to reply to my posts each time, with compassion and humor. Just now, I looked back at her first reply to me and I saw a bit of advice I realize should have been more careful to follow all along: "Do not let wife hear sad stories of doom and gloom. I cannot take sadness anymore !!" Thank you Win.
  5. 5 points
    Thanks Louise. It is a roller-coaster isn't it, and bewildering! Kind regards Majella
  6. 5 points
    Thanks for responding Jean. It is a bewildering experience. I noticed the number of people who have talked about the importance of hydration so am giving that much attention at the moment. Kind regards Majella
  7. 4 points
    Thanks for the responses and the support. To give more context about my particular SAH here are the finer details: As a result of COVID-19, I found myself working from home while my two school aged sons were at home trying to home school (7 year old and 10 year old). I was wrapping up a teleconference for work, when suddenly my neck became very stiff and it felt like I got hit in the back of the head with a hammer. I lost my hearing momentarily. I made it about 4 steps and fell to my knee. I then realized I was in serious trouble. As a result of l being on a teleconference, I had locked the door that led to my basement where I was, in an effort to keep me sons from disturbing my call. I realized no one was going to know what was going on, and I needed help. I made it to the flight of stairs and crawled up 15 stairs and unlocked the door, and saw my wife and two sons standing there. I never once thought about calling for help on my telephone from downstairs. When I saw my sons faces, I knew I couldn’t let them see me like this, so I told my wife to call the ambulance and I crawled up another flight of steps to my bedroom. By this time, I was soaked in sweat and and in a ton of pain. The paramedics arrived and quickly took me to the hospital, despite all my vitals being relatively normal. Once I was in the Emergency Room they quickly did a CT scan and saw the blood on my brain. Because of the immense pain, they gave me morphine through an IV, but it did not offer any relief. The decision was made to transfer me to another hospital that specializes in brain trauma/strokes. Once I arrived at the new hospital, I was placed in Intensive Care for the next 9 days. As a side note, that I later found out, I was the only non-COVID-19 patient on that entire floor and in ICU. However, I was blessed to make it out of my 9 day stay without getting COVID. The neurosurgeon advised me that I would normally stay in the hospital a bit longer, but he wanted me to go home before I caught COVID. My pain had to be controlled with Fentanyl while in the hospital, since the morphine did nothing for the pain. After 5 days, I was able to control pain through non-IV meds (no more Fentanyl). I did experience mild vasospasims on days 5 through 8, but again they were controlled through medication. After, all the testing, my final diagnosis was a NASAH. I am very fortunate on all accounts! From being able to get help, to not getting COVID, to having a NASAH that didn’t require coiling or a clip. I would say that the most frustrating aspect on my road to recovery is that once I have a few good days and think I am all better, I have a really rough day (bad headaches). It looks like from other’s experience, this is a fairly common struggle. I will also add, that in these very unusual and challenging times. COVID has definitely thrown a curveball to anyone that has recently gone through any type of SAH. From no family being able to visit in the hospital, to virtual doctor appointments and everything in between. I am just very blessed to have found this site and hopefully my experiences can provide some reassurance to someone that may have just experienced a SAH during these unique times. I am blessed in so many ways and do have a whole new appreciate for life! Tomorrow is definitely not promised, so make the most of today! Thanks for all your support! Kyle
  8. 4 points
    Hi All, I just found BTG. What a great chat room! Thank you everyone for sharing your experiences! I had my SAH on April 21, 2020 (4 days before my 42nd birthday). I am experiencing many of the same symptoms that are discussed here. Headaches, neck pain (occasionally), cloudy short-term memory, dizziness & head pain when bending over. I do notice great benefit from staying hydrated and taking frequent walks. My head definitely tells me when I have over done it! Ah, stress definitively revs up the headaches. I am really trying to focus on managing stress! I still have very intense headaches several times a week, nausea, and of course anxiousness that I could be having another SAH every time I have a head pain. Very glad to have found BTG, and the opportunity to talk with people that actually understand the SAH recovery challenges. All my best to each of you! Kyle
  9. 4 points
    Hi Veronica, Thank you for posting this answer. It is pure class, and is a fantastic response to a difficult problem. You show a lot of experience and understanding. It is also interesting Dramblys, for us to remember that carers too, have their own issues to deal with, and that SAH sufferers are not the sole keepers of pain and problems. The world isn't perfect and it is often a cruel and unforgiving place. Life can be a struggle for many of us, and it can be a difficult job to prevail. I think what matters is that we are all able to offer care and compassion, and that life is often a question of teamwork, where we need the help of each other to pull through difficult times. That's what makes us human. There is nothing wrong with emotion, we just have to try and channel that energy in the right way, in a constructive way, where we are allowed to cry, where we are allowed to let off steam, but to rally round and overcome the issues at hand.
  10. 4 points
    A 60 something Australian female who suffered A Grade 1 SAH with no identified cause and Grade 4 on the modified Fisher Scale. Frontal Lobe, large volume early in January 2020. Told it would be 12 months to recovery. At this point I'm 23 weeks in. Fatigue, confabulation, headaches, cognitive skills, emotional lability, memory problems, ongoing daily challenges. Senses, sleep and gut have all improved. Have had to give up work which has been hard to let go of. Very glad to have found this site as there's not much info out their really. Kind regards Majella
  11. 4 points
    Thanks Tina, it's wonderful how people take the time to respond. Kind regards Majella
  12. 4 points
    Thankyou Macca. I have been told by professionals and those close to me that patience doesn't seem to be in my make-up. Some work to be done! Kind regards Majella
  13. 4 points
    Hi Majella, Welcome to BTG and I can tell you I was so happy to have found this site also...As I read each of those who responded before me I am reminded this is a wonderful site giving positive support and encouragement.. I was 64 when I had my SAH followed by vasospasm. I also had no cause identified. I just hit 3 years in May, each year feeling more like myself. Time has been the key for me...and my brain won't be hurried as much as I wished it would have. Be gentle with yourself, rest when you feel the need, keep hydrated and please know you have support here... xx Jean
  14. 3 points
    Hi Kyle, welcome to BTG and thanks for recounting your story. I too had an NASAH with hydrocephalus as an added complication. Made it out of hospital after just over 2 weeks but I was lucky that it was not during Covid and my family were able to visit the whole time. However my friends husband had what sounds like a very similar experience to you and he spent 3 weeks with no visitors. He appears to be making a great recovery. Must have been very worrying for your family and lonely for you. Mind you if you were anything like me you probably didn't notice much of what was going on - I was asleep most of the time! Glad to hear you are making a good recovery with just a few blips. This is to be expected and will be made worse if you do too much. I think the problem is that as you feel better you do more which can then lead to being exhausted. Best advice I can give you is take everything slowly and leave plenty of time for rest periods. My bleed was over 5 years ago and even now if I push too hard I know about it. Take it easy, be kind to yourself, hope your recovery continues well. Clare xx
  15. 3 points
    Thank you for this info, Jess. Since you've been dealing with it for 18 years, that helps relieve some of my anxiety. Thanks to your advice and that of another poster, I'm going to step up water drinking, rest more, and focus on blessings! Thanks for sharing your thoughts and the family photo - VERY encouraging. Best of luck to you all!
  16. 3 points
    Majella, agree with all that has been said. Sah is a fine tutor of patience as go too fast or push too hard and your brain will let you know the signals and it’s time to reign in, steady yourself and rest. It means you have over stimulated the healing nerv3 Centre that controls everything, that takes a bit of getting used to. try to see it as an opportunity to be curious about what is this new possible, what can you do today you couldn’t yesterday. Celebrate every small success. Know some things out of reach today may return but only at the pace that’s possible, not the pace you might wish. Practice gratiitude , it helps with patience as you can mark progress and there’s will be. Take care. Steady now Daff
  17. 3 points
    Hi Majella, One good thing about being in the 60 plus range is that we are good at adapting to change as we get older, perhaps because our lives are changing anyway. Life's experiences and maturity often mean we take change in a more philosophical way. Remember, as you move on, that resting well is as important as working well, so listen to your body, it will tell you when you have had enough. Remember too, that there is still much in life to enjoy and marvel at. If you want to ask questions just fire away, someone will answer you and let those around you see the site as well, there is much that they can learn as well in their efforts to help you cope. Good luck Majella, we hope to hear much more from you - welcome to our world! Best wishes, Macca
  18. 3 points
    Hi there Warm welcome, glad that you found us... No there isn't a lot of info out there, fatigue, headaches, cognitivie skills, emotional rellercoaster, memory all normal in my view. take things slow and easy, keep well hydrated helps with the headaches... Listen to your body when you feel you want to rest then rest don't push yourself on... routine helps well I think so anyway. hope the site helps you, knowing your not alone is the main thing... take care, stay-safe.
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