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  1. 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
  2. Hello Brenda Welcome to BTG, I'm also very glad you found the forum. This forum has been a haven of compassion and understanding for me, and eventually my husband. My husband had a non aneurysm SAH in May 2019, and then developed hydrocephalus and required a brain drain as we called it. He spent 3 weeks in neuro ICU before going onto the ward for a few days and then being flown back to our small country town. He didn't require rehab, but endured ongoing and debilitating headaches for a very long time and fatigued very quickly. He feels things emotionally much more, or is less patient at times than he used to be. I have noticed his short term memory has improved over time. Injury to the brain takes an incredibly long time to repair. Our brains are 'plastic' and have the ability to continue to heal, or to find new ways of connecting, throughout our lives. Sometimes, the thing that unlocks our recovery can be very curious. For example, I worked with a man who had a brain injury, I met him many years after he had left hospital and completed rehabilitation. His mother told me that when he had completed rehab, he still had limited speech, and often would get frustrated at not being able to find the word he wanted to express himself. He started seeing an occupational therapist, who realised that during rehab he had learnt to walk again, but had not learnt to crawl. So she taught him to crawl, like a baby. He couldn't do it, but when he did finally learn, his language, speech and words began to return. When I met him many years later, his speech and language had completely returned. Having worked with people with a disability, including brain injury, for over 20 years, I had some expertise to help me to understand my husband's very slow recovery. It was a fine balance of doing for him what he needed me to do, while also setting up situations in which I would leave him to do for himself, to build his confidence. It has taken enormous patience from both of us. We have been extremely fortunate to have a good quality handful of friends and family who supported us emotionally and practically. Many people gave a hand, dropped off meals, helped care for our teenage boys, chopped firewood, helped in small and meaningful ways, or just listened and came for a cup of tea. But their lives continued on and sometimes they stopped coming or checking in, because my husband's progress was very slow. I did notice that many friends or colleagues stayed away, fearful that the person they had known would be unrecognisable to them, that they would feel embarrassed by his condition. This is human nature, people fear what they cannot understand. There were months where I felt incredibly alone and lonely. But this forum helped me through, I hope it helps you too. People can not 'see' the impact of a brain injury, it is an invisible disability. Therefore, it is often misunderstood. I know that my love, care and constant reassurance and belief in my husband has helped his healing journey. I remain so incredibly grateful to have him here. I faced the very real possibility of saying goodbye forever, and there were days when my wish for him to live seemed cruel to him. I'm not sure there's a 'right' way to go about things. We do the best we can, with what we have. Thinking of you and I hope your husband is making progress. Veronica
  3. 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. Hello Charming It's great to hear you had a lovely holiday. My husband had NASAH in May 2019, we have just returned from a 2.5 week driving holiday to visit family 1200km away. He managed to do a lot of the driving, I probably let him do too much, but he has paid for it since coming home. He spent last week sleeping/feeling in a brain fog and having worse headaches. I think while we were away he had to maintain a higher level of focus, and touring around and talking with people to catch up takes a lot of energy, and his body and brain were finally able to relax when we got home, which is when he felt exhausted. I told him he needed a holiday after our holiday. He has started to feel improved after 7 days of rest. Hoping you come good soon too. Veronica x
  5. Hello Todd My husband had a NASAH in May 2019. The support I received on BTG has been so important to me, and to our family. My husband has just joined as well last week, he finally feels able to talk about his experience with others who know the journey. I'm sorry to hear you are having these symptoms, it must be very frightening at times? It's also hard for you when you look well on the outside but have all these symptoms happening for you, sometimes others don't understand. Of course, brain injury and recovery is a hidden experience. I hope you find some answers with your doctor, and experience relief from the nerve blockers. V
  6. I'm so pleased for you Bev!! I hope you continue to improve. xx
  7. Hello My husband had his SAH is May 2019. Like you, this site has been my lifeline to support and information. As you have probably found, when neurosurgeons declare your loved one 'fine' it does not mean everything is good. In my view, it just means that he/she survived the bleed and is walking and talking, so their job is done. My husband still has a headache, he describes it as being 'in the background' and sometimes his head feels woolly as he calls it. He can't bend down , sneeze or squat without his headache worsening. He takes panadol and rests if the pain gets too much. If he has a particularly busy or active day he suffers the next day, and feels like his head is spinning, his headaches are worse, and he is fatigued. Regarding the sudden headache in a hot shower, my husband has not reported a problem like this. As others mentioned, there is merit in asking your wife's neurologist for an opinion, given it was a change in symptoms at 7 months. We have watched our loved ones endure the most horrendous pain and suffering, and survive, it does shake us up when our loved one experiences a worsening of symptoms, especially when it mimics the initial onset of the SAH. I hope you and your wife get some answers to ease your minds. Veronica
  8. Hello Bev75 I have been reading through this thread. You have been through such an incredibly difficult time. I really feel for you. You've been dealing with different complications and setbacks. It's understandable that trying to return to work under the circumstances has been such a challenge for you. My husband had NASAH in May 2019. He's making a good recovery, but of course like everyone he still struggles with different side effects, and it gets him down. He doesn't know what his new 'normal' is yet. Chronic pain is very draining physically, psychologically and emotionally. I hope you are able to take very gentle care of yourself as you work through your diagnosis journey? And I hope you have people around you who you can talk to and who understand that while you survived the SAH and meningitis, the struggle continues. You mentioned your cat, Mac? I hope Mac continues to be a comfort to you. I am a cat lover too and find their company very easy and reassuring (most of the time, I have a 9 month old kitten rescue who is very big and wrestles with my older and much smaller rescue cat, he drives us a bit nuts when he's not being super cute and cuddly). It sounds like you are doing what you need to as you work through the diagnosis journey? Prioritising what you think is most pressing. My Aunty had fibromyalgia for many years, it is a very painful and often misunderstood condition. I work with people who experience sensory overload, and yes a weighted blanket may bring you comfort and help to settle you to sleep better. Let us know if it makes a difference for you. Thinking of you and keep talking to us on BTG. Veronica
  9. Hello Von I hope you find comfort and support on this site. My husband had a non aneurysm sub arachnoid haemorrhage in May 2019. People also say to him 'you look great, you look like you'. Which is a bit of a weird thing to say, they obviously expected to be able to see that his brain is injured, but of course brain injury is a hidden condition. He still has a large dent in the front of his head where he had a drain inserted for 2 weeks after he got hydrocephalus. I joke that he should get a tattoo of my thumb print on it. Everyone's situation is different, different countries have different supports available and I'm not sure how you can navigate the supports in your local area, but maybe some members on BTG will be able to guide you? I'm in Australia, if that is helpful. I wonder if there are any other supports available that might help you to regain your confidence in navigating around your neighbourhood and on public transport? My mother in law had a stroke that resulted in the loss of the left side of her vision, and she was eligible for specialist support and resources from Vision Australia. Support included relearning to navigate and feel confident outdoors and in her home, so I wonder if something like that might be available to you? I'm hoping you can receive some support to regain that which you have lost. It is a slow journey, be gentle with yourself and your expectations. All good things for you Veronica
  10. Hello Sallios My husband had a NASAH in May 2019. It took both of us a long time to feel confident to be apart, I barely left his side the first 20 days after his bleed, and I didn't return to work for 2 days a week until 2 months after his bleed. Recovering from a brain injury is incredibly slow, others can't see what is happening inside your head. So take it very easy, stay in contact with these amazing and wonderful people on BTG who helped us through. You are making great progress, but please also allow yourself to not always go ahead, some days might be a step back, and sometimes it might feel like you're not making gains. But you are still here and writing to us so you are doing amazingly!!! All the best Veronica
  11. Wow, that's amazing Ami!! I wouldn't consider running a marathon and I haven't had a NASAH! I'm very impressed and so pleased for you at this achievement. There's nothing quite like proving others wrong, is there? Veronica
  12. My husband, like you Ben, was a healthy person when he had his NASAH in May (non smoker, walks and cycles, very healthy diet). He doesn't have any deficits, and has been told he will make a 'full recovery'. He has been impatient to get back to his walking and cycling, but his body has told him when he's reached his limit. He has been on 20 km road rides and did a 15km bush walk two weeks ago, but that's over 3 months after his bleed. If he overdoes things, he tends to feel it in the days following (increased headaches, fatigue, his head feels woolly and thick), not on the day, so building up slowly and listening to your body and brain in the days after will help you find your limit. Like everyone says, stay hydrated. Our boys enjoy mountain bike riding, I used to but I'm not as brave as I once was. We returned from a mountain bike holiday in Derby, Tasmania, just before my husband's NASAH. Where are you headed on your long awaited trip? All the best with your recovery, it really is a long road, and our bodies and brains are amazing in their ability to keep on healing. Veronica
  13. Hello Ruth B My husband had a non aneurysm sub arachnoid haemorrhage on 20th May 2019. He got hydrocephalus on day 3, had a drain put in day 3 until day 16, then a couple of days on the ward, transferred to our local hospital, then home 19 days after NASAH. It seems so simple to write now, but it was living hell at the time for him. I felt like I literally held his hand and kept him from floating away all those weeks, his grip on life was so tenuous. He is making a very good recovery, he has been told he will make a 'full recovery'. He is returning to Sydney to see his neurologist and have a MRI next week, for his first check up since he came home. Hopefully he will be permitted to drive again as his neurologist told him he couldn't until reviewed. He was told when he left hospital that he has no deficits, however I notice little differences, but nothing major. Like you, they are hard for me to put my finger on. Probably a little bit more forgetful, but it doesn't impact negatively on his functioning. He has some down days, which is to be expected given what he has survived. He get fatigued the next day if he pushes too hard, does too much, thinks too much, or socialises a lot. His headaches are a lot better, but I notice again if he overdoes things he gets more headaches. We are incredibly grateful to be together, and each day is a blessing and a gift for us. We realise that time is so precious. I'm glad you've found this forum, it's been a huge help to us and I'm sure it will be for you too. All good things for you Veronica
  14. Hello William It sounds like you are having a very rough time. I hope you find the right specialist to give you some answers, and yes, like Macca says, it needs to be someone with specialist Neurology training. Keep going until you get what you need. May I ask, what country are you in? Veronica
  15. 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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