Jump to content

Leaderboard

Popular Content

Showing content with the highest reputation on 23/10/21 in all areas

  1. Thank you everyone for your support and well-wishes. It's so good knowing that there are people out there who can relate to what I'm experiencing and who offer reassurance that this time too shall pass. Thank you.
    2 points
  2. @tricia0304 I'm really sorry to hear about your husband's ill health and decline. I fully agree with @Daffodil, get an urgent review of the UTI. An unsuccessfully treated UTI can masquerade as dementia and other conditions such as depression, and needs to be reviewed, regardless, it sounds like your husband needs a medical review. I hope you can get some attention for him asap. What a difficult time for you both. Hoping for some answers for you soon.
    1 point
  3. @Susan c my husband had a NASAH 2.5 years ago. I can relate to some of what you have said, an increase in rigid behaviour or thinking that can drive me a bit bonkers sometimes. Our lives, especially at home, are made up of a myriad of small things, so when something gets on our nerves, it can change how we feel about life at home. And yes, working from home has meant we have seen a lot more of each other. I have also had a sick 15 yo at home for 9 months, and I work from home, so having the house to myself is so super rare. I agree with Tina, you have both been through an immense trauma, and while survival and 'signs of life' as I put it are still amazing, we are human, and imperfect. Sometimes things annoy us, but it doesn't mean we don't love our partner or that we aren't super grateful to still have them here. Here's a few of my observations, partly personal as a partner of a NASAH survivor, partly professional as a person with expertise and experience in supporting people with disability: - survivors of SAH have experienced some damage to their brains. This doesn't mean they have lost intelligence or cognition, but that their cognition may be changed, slowed, sometimes get a bit clogged up, and tasks that they used to do without thought now take active concentration at every step, which is exhausting for them. So some rigidity around routines/not being interrupted during a routine etc, are their way of coping and still being able to be as independent as possible. Adults all need to feel capable and competent, and people with brain injury are often very aware that their brains once worked differently, and there is certainly some self protecting behaviours (pretending or denying there is a change), some anxiety ,and some grief about that. As partners, we also grieve the loss of the capacity that our partner once had. This is normal, it happens a lot, and it is ok to feel these big and conflicting emotions. Being able to name it and talk about it might be helpful, but as you say, it might be better for you to have this conversation with a counsellor. Your husband may or may not have a need to talk about it. My husband and I talk about it quite a lot, especially when it is really getting him down. Being understood, and being reassured that what he is experiencing is a real thing helps him to cope. - The fatigue your husband experiences is huge, it never goes away, and it has a real impact on his lifestyle (and yours). I know that if I want to go somewhere that is noisy, or busy, that my husband probably will not enjoy that at all . He gets overwhelmed and can't cope. It's like torture for him, so I either go alone, or find a friend who enjoys those environments. My husband joined a small cycling group after his SAH as a part of his recovery, and it has always been his 'thing', his social time, his group of friends. I fully support this, because I knew that he had to have some independence from relying on me (and I needed to not be relied on always too). Having said that, I do provide a lot of emotional support and reassurance to my husband - again, the brain injury affects his ability to regulate his emotions, he cries easily, feels things deeply. He is very optimistic and joyful, but also very easily affected if he sees others in distress/hears distressing stories. So he limits his exposure to that content/those stories. His sense of humour, enormous intellect and beautiful character traits are all still the same. Sometimes I find his neurotic behaviours are a bit more concentrated than before the SAH (we all have neurotic behaviours), I try to tell myself it's 'signs of life' at those times if I feel irritated, which was our joke in hospital when he had to deal with yucky body functions - I'll say no more. Your comment that your husband says you are yelling at him really caught my attention, my husband says the same to me when I am not yelling at all. I do have a naturally strong voice, but he tells me I'm yelling or raising my voice when I'm not sometimes. It has puzzled and annoyed me, but your response and Tina's has helped me to understand that better, thank you. Please don't feel bad or guilty at all that you have reached out for support. We all have a different comfort level with being vulnerable, and saying things 'how they are'. But it is really important that we can be real about what life is like for us, it is how we cope and can find a pathway through. I hope you get the support you need for you. No person needs to be an island, or cope in isolation. You are not being disloyal to your husband to seek support to understand his needs and behaviours better so that you can continue to be the amazing support you have been. I hope your holiday is a beautiful time together. V
    1 point
  4. Hello @Esedlock, I'm glad you found this forum so quickly. My husband had an NASAH in May 2019. He was still in hospital at 3 weeks, he developed hydrocephalus and was very sick. When he returned home he was extremely frail for months. You are doing amazingly to be so active so soon. It sounds like you're really keen to know 'when' you will be recovered. From my observation and reading, everyone is super unique with that, and no one can actually give you a definitive answer, even Neurologists will give you a vague answer. Some people report ongoing improvements 12 years later. Some people, like my husband, experience relapses. He has been working too much lately and experienced a recurrence of the daily headaches, head pain on bending over, stabbing pain at the site of his SAH, and extreme fatigue. Like others, he exercises, is really fitness focussed, regularly cycles 60km, and runs 5 km, but brain work and concentration (he's a train driver) really wear him out in an entirely different way to being physically activel. I recall the advice to him in the early days was to drink plenty of water, to rest when his body and brain asked him too. However, sometimes when his brain is fatigued, a gentle cycle helps him to feel better. The biggest challenge for him is to not overdo things. like you, he wants to find his limits, and be at his best. Sometimes he overdoes things, and then he knows all about it. Time, patience, gentle perseverance and being willing to manage your expectations seem to be the key. Take care
    1 point
  5. @debbieg you've had such a journey to finally getting some answers. It sounds like you're finally getting the treatment you need. I hope you start to feel an improvement soon. I live with several auto immune conditions, some of which are quite benign, such as vitiligo, but what I've learnt over the years is that being vigilant about keeping a healthy balance in life, getting good quality and regular sleep, regular exercise, and healthy nutrition, plus drinking water, has all helped to keep me on an even keel. You've had so much to deal with, on top of surviving an SAH and a long hospitalisation. I hope life is kinder to you.
    1 point
  6. Hello Claudette, My heart goes out to you as you navigate this new set of challenges. I had my rupture 13 years ago and aneurysms (2) ultimately were clipped, so they're supposed to be fixed forever and I'm not even monitored any more. Does that mean I never have a moment of worry or anxiety about it? NOPE. So first you know that you are completely normal and entitled to all the feelings you are having now. All at BTG feel that, respect that, and support you, especially in light of all the other occurrences and obstacles you have to face. Honestly, I believe that Kathy has expressed that support so eloquently that I don't know what to add. All I can say is whenever I find myself spiraling downward I think of all the reasons to keep pushing on, especially those who really need me. And I lean on my faith, which really developed well after the SAH. I won't lie, it's a struggle sometimes, but it definitely helps to have a trusted family member or friend to reach out to and to seek professional care if it all becomes too much to do alone. You've already miraculously survived TWO ruptured aneurysms, so you obviously are a strong lady. YOU CAN DO THIS and we will be here to buoy you up! Love, Colleen (Texas, USA)
    1 point
  7. Dear Claudette, As Kathleen wrote above...I care...you have been through so much... I understand your worry and I also understand wanting to protect your loved ones. They will be a comfort to you as you navigate all this. Sending hugs and you are in my thoughts and prayers. xx Jean
    1 point
  8. Hi there try not to worry my 3 new ones haven't grown in 10 years they were noticed in 2011 I was told in 2020 they were there how considerate of the hospital for notifying me only took 9 years lol If mine haven't grown in 10 years I try not to think about them as I may get hit by a bus before any thing happens with them I know it's hard and it's not easy to come to terms with but keep trying hope you feel better about it all soon xxx
    1 point
  9. Dear Claudette, I am so sorry for this news. I am sorry it is you who has to bear yet another hardship during this difficult season of loss and family health crises. It is understandable that you are feeling depressed. And, we are always trying to protect our children. You did the right thing reaching out to BTG. It helps to put your thoughts and emotions down into words. We are here. We share your struggle and tears. How do any of us do it? It helps knowing others understand and care. I want you to know I care. Others here also will lift you up in their thoughts and prayers. For me, my faith carries me through times of uncertainty and keeps me from despair. It is an inner strength and resilience that comes just when we need it that keeps us pressing on and looking to the next day in a spirit of hope and determination. Keep the fight in you dear friend. I am hoping you’ll confide in someone there and begin to place yourself in a circle of supportive people that can offer you their presence and hugs. Seek professional counseling if you must ~ no shame in needing help to process all you have gone through these past few years. It is important to get the support you need and establish an environment of calm around you. Your mind and body need healing. Your feelings are normal. You feel sad because this is awful. You feel tired because this is exhausting. It is okay to be angry. Don’t shut down from people who might mean something to you or can actually help you. Today, I pray you are able to discover… to notice… to taste… to smell… the small joys and simple pleasures that make a life worth living. You are a blessing. You will journey through this next medical trial and we will walk it with you. Our suffering is part of our humanity ~ sometimes it just hurts. It is good to sit and walk together. Love, Kathleen (Colorado, USA).
    1 point
  10. Dear Claudette, I am so very sorry you are having to go through all this again. Bless your heart, not surprised you are feeling so down, you have been through so much and a huge shock for you. Sending you big hugs xx Hopefully, when you have your appointment with the Consultant and things are clearer for the way forward, you will be able to get your head round what is planned and then can sit down and tell your children. You will need the support from your family and friends and they would want to be there for you. Sending loads of positive thoughts your way. We are always here for you xx Let us know how you are doing. Take care Love Tina xx
    1 point
  11. Hi I was out running when I had my bleed and was keen to get back to it afterwards. It took a good couple of months before I was able to start exercising again so to walk a mile after 2 weeks is impressive. I think you need to speak to your neuro doctor about how much exercise and when. Give yourself time, you were fit prior to your PMH so hopefully you will be able to regain that fitness. I now regularly run 4-5 miles three times a week with no issues but working for a full day still floors me - people can suffer from different types of fatigue, mine is brain fatigue. However I do find when my brain is saying 'no', I can go for a run and then feel much better. Take it slow and listen to your doctors advice and hopefully in time you'll be back to where you were. Take care Clare xx
    1 point
  12. I just wanted to post this and share with the forum. I am 9 years on from my SAH with no evidence except from lumbar puncture. Did the 28 days hospital and released to absolutely nothing and have struggled ever since. Many odd symptoms but this constant exhaustion was seems to be a thread running through many SAH survivors. I still have to rest for several hours a day and nap for an hour. My lunch break is about two to three hours. Then by 7pm I've had it again. I can't even go out for the day as I get tired after a few hours and if I don't sleep I get dizzy and faint. Anyway for years I felt my body was fighting something rather than just getting over SAH being the whole explanation. It's taken years, tests by different specialists all coming up negative and I'd just about given up hope and just accepting my situation of what feels like an 80 year old or more. I'm now 51 and managed to find the right route to go down and have just been diagnosed with Lupus and Sjogrens Syndrome autoimmune conditions (scared and relieved about it). It was sudden very dry constantly runny eyes that got me down the right path. I'd had a very dry mouth since the SAH and an unquenchable thirst most of the time, sensitivity to light and rash when I go in the sun but no one picked those symptoms up. I don't know if the SAH sparked everything off and the menopause has exacerbated things but I wanted to put it out there that the exhaustion some may feel may point to another underlying condition which the after effects of SAH has hidden. I have medication which will helpfully ease the tiredness and a bag of other meds now to take! But I am extremely pleased that I didn't give up when GPs have written me off as a hypochondriac or just put everything down to SAH. It is becoming more known that body trauma can kick start autoimmune conditions and if you feel something isn't right don't give up. Hopefully any others who feel like me won't have to search for years to get answers. Just because you have had one rare condition doesn't mean you can't have another.
    1 point
  13. I am about 3 yrs out and really get that "exhaustion" thing too. I really need to nap each day. It is tough to fit in with work, etc. My exwife didn't understand why I was sleeping. My new girlfriend understands fortunately. Your brain gets into a fog. I have started to do the following. First, the brain only uses simple sugars for energy, nothing else. It wont use carbs or fat. So what I do is the following: I never ever drink any soda at all. Then, on a day I am doing a long work thing, I bring a 2 liter of mountain dew. It is loaded with sugar and caffeine. Also, because I never drink it until a work day it has more of an effect. I work around 3 days a week. I had a day a month ago when I was driving a long distance (4 hrs) and I literally stopped and bought a hotel room for a nap. It felt ridiculous paying 60 bucks just for a nap, but I knew if I kept driving , I would wreck. The brain sometimes gets in a fog. Oh well. Thanks for your story and I hope you feel better.
    1 point
  14. Brenda, I am so sorry that your husband has had another stroke and you are both apart at this time. I imagine seeing him was a relief in one way but hard as well with the enforced restrictions making visiting difficulty but yes I hope he will Be able to come closer to you and home and get some rehab help. i hope he is receiving good care and was able to talk to you but one day at a time is probably very sensible. be kind to yourself and do ask family or friends for help or just to talk if you need support. That’s ok. And if you are worried or just want to vent feel free to come here. Someone will listen. Take care, go gently. ANd look after yourself, eat well and rest too. That’s important so you have strength in all this.
    1 point
  15. My husband had a stroke on the 3rd January 2020. His right hand and speech were effected. He made a very good recovery from those symptoms but I have become anxious about behavioral effects. He is very tired, does very little and has little self motivation. He is also easily irritated but sometimes he is not. His memory for recent events is very poor. I am talking about things that happen on the same day let alone yesterday or last week. Yet sometimes he surprises me by what he does remember. To be honest I don't know whether I am coming or going as the ground beneath my feet keeps shifting. Can anyone relate to these experiences?
    1 point
  16. 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
    1 point
  17. Hi Brenda, So happy you found this site...I know when I found it for the first time I felt like I had found my people, people who understood my journey. Brenda, my husband and I have talked at length about what happened to me, nearly 3 years ago, and also what happened to him. I am sure he would agree he felt like the ground was moving....I didn't realize how it was impacting him until I had improved a bit myself. Having an injury to your brain is not like any illness I have ever experienced. It felt like it interrupted all my efforts to resume my old life. I couldn't figure out how to use my cell phone, couldn't remember if I had talked to someone that day or two days ago...everything felt a bit like a scrambled egg... And there stood my husband, love of my life, trying to understand it all, visiting me everyday and when I came home trying to get me to all appointments and make sure I didn't fall or forget my pills...I am sad to say it took me a while to feel his pain going through this... It is a slow process, the brain healing, and as said above something that is not measured in days or even weeks...more something that you look back on and think..oh yes he/she has gotten better since then...our brains are amazing though and will work hard to heal... I wish you both well , you are lucky to have each other... Jean
    1 point
  18. Hi Brenda, We mend but it takes us a long while to come back to some normality (In my case it did as never been normal) lol xx My Daughter found this site, I was afraid at first as I thought my next step was Death, Cheery wasn't I !! So came on here after I felt strong enough My way out of this mess was to keep happy and tell family not to tell me sad sob stories or who they had a row with as my brain couldn't take it. Loved Chocs and singing and being spoilt. But when I came on here I saw people with same as me and they could be funny and smile...This site helps others who feel alone in their fight to get better, we are not alone I learnt from this site and it really helped me. I'm forever asking "Did I tell you this Al" to my hubby and he goes" yes Win 6 times now !!" Grrrr. So I knew I was better after our first row. Early Days for your hubby but talking to others who have been through same does help. Was told I wont ever walk again or be same as was ..Still need a wheelchair for going shopping but walking around home and showering is done by me so a little dignity back xxxx Good luck to you and your husband and let him know there is life after Bleed xxxxxx We are all Survivors xxxx My right hand is weak and when I write cards out it costs me a fortune tearing up the ones I messed up on lol xxxxxx Chins up the pair of you and honestly it does get better look back 4 weeks not 4 days and see how far he has come on xxxx Remember you also need a break xx if possible xx
    1 point
  19. Hi Brenda and welcome to BTG. Short term memory is one of the casualties of SAH. Your husband's brain will be trying to re-wire itself. From the great replies above, you will gather that it is quite normal or usual to have these problems. Longer term memory is less affected. Over time, it will get better to some extent - as did mine - but as Tina says it is still very early in recovery stages. Good things to be doing for him will be to make notes of anything he needs to remember, keep a diary, keep on repeating things until they become long term memories. Once you transfer the memory into the 'other box' he stands a better chance of remembering. Skippy catches what I am trying to say above. Please remember, he can't help it at the moment, so you need to be tolerant of him and give him the support, space and time to recover. Resting well is just as important as him making an effort. At this stage of his recovery he will tire easily, but it will get better over time. It is a slow and gradual process though. He might look normal because there are no scars to see, but there is internal damage that needs love and care, support and time to heal as best it can. Everyone's journey is different and times vary from individual to individual, but big improvements can be made. Keep a diary of your own, noting what he can and can't do, and over time when you look back on it, you will see big improvements have been made, almost without noticing. Remember when a relatives kids are growing up? if you are with them every day you don't notice much, but if you haven't seen them for six months you say 'My word look how much you've grown!' Well, it's a bit like that with this recovery lark! We're always here, so feel free to ask your questions whenever you want to and you will get replies, for sure. Best wishes Macca.
    1 point
  20. Hi Brenda So glad you found us too. I can completely relate to all you've said above about your hubby. It's like you're describing me. I couldn't remember people visiting the same day let alone conversations I'd had with people. The irritability was a given - for me it was borne through the frustration of not being able to remember things and not being able to do what I wanted to do. It is very early in recovery and it can be a long road to get there - but we're all different and our timescales will vary. I know it's hard for you right now, but try to stay positive and ignore the irritation. If you have to repeat conversations, then do so, but without reminding him you've had the conversation - hopefully one day he'll turn round and say "We've had this conversation!". We're all here to listen and help you both through this xx
    1 point
  21. Dear Tina, Thanks so much for your response. I have to confess that going from feeling quite "normal" before reading it, I am now in tears. It has made me realise what an enormous burden I have been suppressing. Your words give me great comfort and will help me to cope much better. Thank you. Brenda.
    1 point
  22. Hi Brenda A very warm welcome to BTG Glad you found us. Great news to hear your husband is doing well. Your husband is still in the very early stages of his recovery, His brain will be working overtime trying to mend and recover from a huge trauma, as well as doing the normal everyday things. All that you mention is quite normal and many of us here can relate to. There will be good days and bad days at this stage, but it will get better Wishing your husband well with his recovery and look forward to hearing how you are both doing. So hard for our loved ones too. You will find lots of helpful information on the Forum. Please feel free to ask any questions, we cant give medical advice, but can share our experiences. Take care & remember to look after yourself. Tina xx
    1 point
×
×
  • Create New...