Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Hello!

By registering with us, you'll be able to view our forums in full as well as discuss, share and private message other members of Behind The Gray. Why not join us now?

Leaderboard


Popular Content

Showing content with the highest reputation since 19/08/18 in all areas

  1. 11 points
    Once of the most distressing things for me post SAH was my ability to cope with cognitive demand and sensory overload. It was painful. In time that’s passed since, 7yrs, I have learnt more about my triggers but also how to pace and rest in ways that’s right for me but I still know flooding can and does happen. I still wear sunglasses and earplugs on many occasions and still alway carry them. lots of people come to site and struggle with the sensations and how this feels And I think this is a great education video that explains it credit to Northern Brain Injury Association
  2. 11 points
    It is15 years tomorrow since my life was changed. In fact it is so long ago now I tend to forget the date of the event, I have to look it up. So far back, the date has almost disappeared from my memory. Looking on the positive, my life has changed for the better once I recovered the best I could. No point in looking at the negatives, you can't change what has happened. Grasp what you have with both hands and move forward the best you can under the circumstances. May take ages just to make a little progress but determination will help. There is a future after SAH, maybe not the future that was planned but a different future. In my case I feel that my life now is much better than I envisaged pre SAH
  3. 10 points
    Hi, I just wanted to briefly say where I am 1 1/2 yrs out. What made me think of it is, I spoke with nurses who have known and worked with me forever and this is what THEY see. Firstly, i am happy and doing great. I am working almost full time.But again, it is best to let Others tell you how you are, because like most men, I am in some denial and want to push forward. Here goes: 1)I am more laid back about life. This has been the best gift of this thing. I fly and visit family, play golf, run, and dont work so hard. My ICU doc told me all young people he sees with this are uptight workaholics and that was me. I was kind of a miserable workaholic before and not now. YEAH!!! Thank you!!! 2)I cannot learn some things. I read a lot and am learning spanish. Why???? Bcz i am trying to prove I can do it. But the other night, i went to a salsa class and just could NOT learn it. 4 steps, could not do 4 steps. I can learn on my own (ie:learning spanish) but if someone verbally shows me, i can not learn it. simple things.Frustrating. 3)this is funny, but i put things in particular places and they MUST be there or I get angry. This is all after the bleed. I had a rentacar the other day. And immediately after getting in, I rearrange everything to where it "lives" in my home car. Things must live in their place!!!I have some fear of losing things. My mind cannot remember where i put it. So i always put it one place only. When parking the car I always park in same spot. Each place i go has one spot. Or else i will never find the car. 4)I am more adhd now. So say my coworkers. "we have to keep you on track" they say. 5)my emotions go up and down. This is a tough one, because I do stupid things and people blame me. I think the emotion center of my brain was damaged. This causes me trouble because noone wants a doctor with emotion issues, right?? 6)I meet people, then remeet them. Funny. 7)I repeat myself a lot. This annoys people. They tell me all the time. "you already told me that". I get that a lot. (just reading this post, i noticed i have repeated the "learning spanish" thing 4 x already, jeeeeesh!) 8)My short term memory is TERRIBLE. What were we talking about??? Just kidding. But seriously, if i am in a restaurant and get up to grab a fork, half way there I have no idea what I went there for. So I say to myself "fork,fork , fork, fork" and then the person near me says "what did you say??" And i say "fork". And they say "why are you saying fork?" It is daily comedy in my life. 9)I have eliminated toxic people from my life. Another gift of this experience. I used to be polite to them out of politeness. No longer. They have been deleted. I also remember , very clearly, who came out of the woodwork to help me through this crazy ordeal, and I remember very clearly who abandoned me and pretty much left me to die. My deficits are comical to me. They show something of how the mind works. I can memorize the past preterite tense of spanish of an irregular verb, BUT cannot remember where the car is! I have strengthened my relationship God thru this ordeal and thank Him every day for my recovery and new life!! I am probably more glad that im not paralyzed then dead. I was very lucky to be alive, not paralyzed, back to work. So you will never hear me complain about my deficits. To me, they are comedy. I thank God every day for my new life!
  4. 10 points
    Wow! Where did the time go! 8 years and I'm still here! 1st September 2010 changed my world and my gratitude to everyone who help save my life and rehabilitate me is as great today as it was at the time. I've also come into contact with so many wonderful people through this site who have helped me and to whom I have tried to pass on some of my own experiences. The bottom line, though, is that I survived and continue to live my life with optimism, grateful to many people and the progress in life sciences that makes it all possible. Thankful that I live in the 21st century! Oh - and six years ago today, I got married to Sandra = another reason to celebrate!
  5. 9 points
    I hope that this gives you a little comfort and today is my 14th year after the 2nd SAH ... It was as hot as it is, today... I'm still kicking! Lots of love to you all....xx
  6. 9 points
    Well here I am seven years on and still feeling really positive. I have my routine check at John Radcliffe on 5th May now that fills me with dread as I hate going back to where my life was hanging in the balance but my sons tell me that I should see it as a positive as that’s where they saved my life. I'm doing really well, still have a few little niggles but nothing too bad, I’ve travelled such a long way and will continue to do so. To any new unfortunate people all I can say is hang on in there, your life will improve, even if you never get back to who you once was you will learn to accept the new person and be very grateful to your new life because I know I am! Good luck to everyone and may we all continue to move on in a positive manner. lots of love and luck to each and every one of you xxx
  7. 9 points
    Welcome Jojo. You are not an impostor here. A lot of us have had bleeds that are minor compared to some of the rest. But as I am often reminded, a bleed is a bleed. You are a survivor among survivors! Some points that may help: NASAHs often have no underlying cause. This makes it hard to accept that it will not occur again. But statistically, I was told, unless there is a cause found, the odds it happening again are no greater than the first time. Getting on with your life can be scary at first, but it will get better There may be long-term affects. I and a lot of us still have headaches more often, memory problems, maybe some eyesight problems. You did go through a traumatic experience You injury is not visible, so don't expect others to understand all of the time. Follow up, for some reason, is not great for a lot of us from doctors. However, the support and information on this site is invaluable. Sending prayers, Chris
  8. 8 points
    Well I can't believe it is 5 years today since my head went pop, don't know where that time has gone. I do feel I am doing ok, still have my issues with memory, fatigue and the usual things but I am coping with them a lit better than I was in the beginning. This last year wasn't my best, had a few mental health issues and found myself in a situation where I was having some very dark thoughts, I won't go into detail about those thoughts as I wouldn't want to upset anyone, I immediately went to see my GP and told him how I was feeling, he arranged some help and I got through it, I had a lot going on at that time as it was coming up to 1st anniversary of my mam's death and also a lot if hassle with DWP, I think it all just got to overwhelming, but I dealt with it and came out the other side feeling a lot better. I really want to thank everyone at BTG, it is like having a second family in fact you have all been more supportive and understanding than my blood family, for that I will always be eternally grateful, it is my safe place, a place I know I can come to without being judged. I want to say a huge THANK YOU to Karen and all of her team of moderators for giving us this site, I for sure wouldn't be where I am today without it, my BTG family have been my saviour over the last 5 years and I thank you all for being there with support and encouragement, I love you all dearly. I will end this with an extra special THANK YOU for Jan, thank you for being such a very special friend Jan, I will never forget the day we first met, we were both very nervous, don't know why we were worried, we hit it off straight away, you are a beautiful person both inside and out. We made a great connection and I want to thank you for always being there for me, always at the other end of the phone when I need someone to talk to, i am truly blessed to have you in my life and even more blessed to have you as my friend, I don't think you realise how much you have helped me over the last few years, love you to bits lovely lady. I am looking forward to the next 12 months and whatever it brings, all things good I hope. Thank you everyone, love you all very much. Love Michelle xx
  9. 8 points
    Many thanks for everyone's response. It is simply so difficult to slow down! I guess it might be true that many SAH patients are type A people. 😉 However, I am struck by a comment from my ophthalmologist this week - you do know you are lucky to be alive, right?! It came as a timely reminder for me, though I am still easily distracted by apparent and physical recovery. On the other hand, my head spins from automatically planning for the next day/week/month/year before bed...😓 I recall someone on BTG said the invisible injuries and problems post SAH makes them that much more difficult to explain to others. How I wished we could all see the bruises and damages inside, if only to remind ourselves that this is an ongoing process!
  10. 8 points
    Exactly one year to the day when my world changed but I made it. Had my yearly check up and the doctor says the coiling has impacted and that there is a balloon developing at the base, so they will be having me back in within two months to repack the coiling and fit a stent and also consider what to do, if anything, about two other small aneurysms on the right side, but they haven't increased in size since April so that's up to the team to decide. My short term memory seems to have improved in the last few months, I find keeping a diary helps, not just of what I've done but how I am feeling, depressed, confused or happy. I try to do brain games on the iPad, find the word, join the letters, solitaire etc. I get really nervous going into busy places, my self confidence has really taken a knock, must have somebody with me otherwise it's like brain says enough is enough, too much information so get me out of here. But, and it's an important but, I'm still me inside. Hope you all had a wonderful Christmas and hope we all have a wonderful next year.
  11. 7 points
    Hi I am so proud, some of you may remember my daughter, Rebecca, had a SAH 4 1/2 years ago at the of 17; she has struggled throughout this time but was determined her SAH would not stop her from doing what she wanted. On Friday it was confirmed she has achieved a 1st class honours degree in psychology! I am amazed at her hard work and dedication, she deserves every happiness in this world. Her university days have not been what most would expect, her fatigue has prohibited her from taking part in extra curricular activities, but she has got through. She has studied hard but still had a wonderful experience. She manages her lifestyle to suit her needs and doesn't let it get her down. Yes, she has regular counselling and attends support group every month; but she is a happy and confident young lady. She starts a new job in couple of weeks, at the RVI, the hospital that saved her life - a new chapter in her life and hopefully the start of a fulfilling career doing something she loves. Heather x
  12. 7 points
    I will be nine years into my recovery this Friday 9th November. Life isn’t the same but I’m so grateful to still be here and still able to work at 61, all be it only three days a week.
  13. 7 points
    Hey there hun Firstly there is a distinct difference between being frustrated with someone and treating them like a child and they need to know this. Also they need to have more patience with you rather than making you feel like you're frustrating them. If there are things you need to remember, write them down on post it notes and put them in a prominent place so that you can see them. If you have appointments get a wall calendar and also put them in your phone with an alert to go off with plenty of time before so that you don't miss them. At the end of the day you are, quite literally, the injured party and they need to adopt patience so that they don't make you feel like they're treating you like a child. By the same token, you need to remember that they are not treating you like a child, they are trying to help - and at times this is going to frustrating for you all. Patience and understanding all round is the ticket xx
  14. 7 points
    Thank you everyone for your advice. You have really shown how this forum is a warm and supportive community. Over the past weekend I have tried going out of the house for longer and having dinner with a group. Must say what would have been an easy and relaxing break in the past gave me headaches and insomnia! I have also tried glancing through work emails just now. An hour of it without actually working on them already makes my head spin quite literally. Suppose there is no denying I am still not where I would like to be recovery-wise. I will probably tell my neurologist next week and try to ask for an extended sick leave. Many thanks again for your support. Hope I will have better news to share next time! Meanwhile, good wishes to all who are working their way through post SAH here.
  15. 7 points
    The amazing news that my full driving licence was mine again was emailed to me at 6.15am today from a very efficient and helpful member of the DVLA team!!!! Contacted my insurance company and just as you said, I had my insurance reinstated free of charge immediately. Needless to say I have already been out for a couple of short local drives and the sense of freedom is indescribable!!!! Thank you to all of you on this forum for the advice and support- I will never forget it. Dave ( Finollie)
  16. 7 points
    Thanks for all the good wishes, the site kept me sane in the early days. Loads of good advice. For someone who had never heard of a subarachnoid haemorrhage before getting one it was comforting to know it could happen to anyone. To everyone who is in their first year keep your spirits up there is a future.
  17. 7 points
    Hello everyone! This week is always one of the toughest of the year. So many thoughts, feelings, memories- nothing easy at all. I am grateful to be here, writing about my experiences, gaining support, and giving as much as I can to others. Nine Years- I still go back to the spot where it happened. It is still unbelievable how much has changed, and how much still remains as a part of the experience. I do hope that, to any of you that are new to this journey, or to those who have been recovering longer than I have, things move on. A new normal can be achieved. You will learn a lot- especially how to lean on your support system. Some of you will find that you are not good at utilizing that support system. Regardless, this time on our little blue marble is precious, find gratitude, and center yourself in the knowledge that you are still here, and have so much to give. Thinking of you all.... Noah
  18. 6 points
    Hello Katow My husband has NASAH on 20th May this year, he's a healthy, fit 57yo. I did a lot of research, and read medical journal articles in the weeks after his haemorrhage. It is confounding that something so life threatening can occur to a health focussed and fit person. The truth is, it can happen to anyone, of any age, and for reasons that cannot be explained (I witnessed people of all ages in the Neurology ICU with my husband, he was too sick to observe what happened for those people, I watched as people fought for their lives, and others lost their lives, all happening around him). Having something so life threatening occur is in itself enough to trigger anxiety and panic disorder in the best of us, if you had any pre-existing anxiety, it's not surprising that you could now find yourself struggling, especially so soon after the SAH. What I found is that the medical help kept my husband alive and aided his recovery, but once the medical crisis had passed their job was done, and no further support was forthcoming. I agree with others that counselling and mental health support are also a big part of the recovery. We know that life has changed, we are incredibly glad to have my husband still with us and because he was so healthy when the NASAH happened, his prognosis for a 'full recovery' is very good. We don't know if he will return to his job as a locomotive driver, but we know there are more important things in life. As I said to him, we can't go back , we can only go forward. Having a health crisis like NASAH is confusing and very distressing, but it clarifies what is important in life, and what the priorities are. I wish you all the best for your recovery. The stories and support I have received on this site has been incredible and a huge part of me coping and helping my husband cope. I hope you will continue to find comfort and support here, you are among friends and fellow survivors. Veronica
  19. 6 points
    Hi all Thanks a lot for all the kind words. Sorry for the delay in reply. After the meeting and another small get together (in which I could not stay because of the loud sound), I was totally knocked off and needed a long time to recover. However I am glad to share my meeting went on well. Boss was very very understanding and accommodating. He is ok with my current schedule and infact offered more liberty in timings. Colleagues still had some concerns but they also seem to be settling down now. Feeling better for the last three days now. Hope the good days last a little longer. Thanks again for the support in difficult times. There was no way I could have shared all these things with anyone else other than this forum.
  20. 6 points
    As we all know, this experience isn’t always fun. It can be extremely difficult to wake up one day and everything in your life has been turned upside down. If I had to take one thing from all this: never stop trying. There will be victories. There will be more tears but those wins will be all the more sweeter. So what’s my recent victory? Before all of this PMSAH/CVST stuff I was a ultramarathoner. Loved it. Now the thought of it scares everyone who loves me. But we, the survivors, have to keep moving forward. Have to keep living, for if we don’t, what do we have to live for? So 2 weeks ago I did my first marathon back. Absolute glorious day and although there was no personal record, there was a huge victory over my illness. It felt so good those final metres of the over 42000 I’d plodded out. I’m lucky and I know it. I’ve recovered well but I still struggle at times, physically and mentally. I don’t expect I’ll ever recover completely and there’ll be hard times ahead. I’ll get through them tho, safe in the knowledge that if I stay strong and keep swinging, those little victories will be there. Good luck to us all and may the little wins be the sweetest ones of all!
  21. 6 points
    Iola, it’s good to hear from you. I’m sorry work is troubling you. I retired the year before my episode so got a bye on the return to work experience. I think if there is anything good that comes from experiencing what we have it’s discovering what and who is actually important. You have come far and done very well. You should be proud of yourself.
  22. 6 points
    Hello all, I am over the six year hump and sliding to 10 years. My five year was such a feeling of "finally" that I decided I'd turn over a new leaf with a new attitude and that lasted for five minutes or maybe five days, I can't remember!! Last winter was rainy, cold, and work was so stressful and the headaches were terrible. It's a wierd headache. Pain? Yes. But, something more than that. A feeling like my head is in a fishbowl with a vice wrapped around it. I had a few dizzy spells and I don't freak out like I used to but I do feel my body getting very hot. Maybe a hot flash as I am 53 now. Good grief. I think it's too little sleep and too much stress and I do know when my body says enough, although, I choose to ignore it sometimes. I am trying to make changes and I am going part-time soon. Really! After a life changing experience we all want to get back to normal and that just does not happen. I'm tired. Tired of headaches, tired of not getting on rides at parks, tired of always feeling weird, tired of the corporate bs, tired of trying to be as fast as I used to be, and tired of trying so hard. I love my team but do not care for the power players and I wonder why I even try? I've always been a helper but I do not seem to be helping myself. I think I'm at a crossroads and it is so hard to let go of what you worked so hard to get back to only to find you don't like it there anymore. I'm rambling. I dunno, just thinking out loud this evening. Thanks for listening. "i"
  23. 6 points
    Hi everyone, Today marks my 4 year NASAH anniversary! March 28, 2015, just two days after my 40th birthday, I experienced 'the headache'. I knew something was wrong within minutes and had my first ambulance ride to our local hospital. They thought I had an aneurysm so they rushed me to the trauma hospital the next city over. A few hours later a neurologist told me I had blood on the brain. He never used the term SAH, NASAH or stroke, just blood on the brain. When I was discharged days later, I asked, what happened to me? What is this called so I know my medical history? I had never heard of SAH until it happened to me. I was off work for 2 months and it was absolutely the worst months of my life. I couldn't work, drive, read, watch TV, think straight, cough or sneeze. My body was just still. It was afraid of what a jolt might do. With family support, meditation and just taking things day by day, things did get better. Four years later, I'm doing well. I celebrated my 44th birthday a couple of days ago, no ambulance ride or ICU This is progress. I'm still scared it's going to happen again, I'm afraid the next time it may be worse. But I don't want to live in fear. I want to live each day the best I can. Whatever happens to me, will happen to me whether I worry about it or not, so I try not to overthink. My SAH is a mystery to this day. No cause determined. I suppose not everything in life has an explanation. Thank you to BTG. I do check in and read the articles, your stories and it's comforting to know we are not alone. Cheers from Burlington, Ontario - Canada! Alison
  24. 6 points
    Thank you for all your nice comments and well wishes! I now consider myself not only a survivor but my head is now a barometer. My head throbs when I'm stressed or feeling anxiety ... about anything - life, work, etc. I swear I can feel the exact vein pulse that bled 4 years ago, when I'm feeling tension. It reminds me to stop, breathe and relax. I can't stand the wind, it makes my ears hurt and feel full for hours. I wear a hat when I go walking. My eyesight has changed. I've always had glasses but now my eyes are worse, new script each year and my eyes get heavy and tired quickly. Not the easiest thing to manage when I'm trying to work on my computer all day. I find in general my energy level is less. I need rest more often and 8+ hours every night. Although I enjoy exercise, especially outdoors, I'm always thinking about my pressure - my blood pressure, my head pressure. When I'm sick with the cold or flu, I can't take anything. 4 years ago I had the flu and when I had the SAH, I was on 3 meds for sinus and chest infections. I'm now blacklisted from many medications as they affect pressure/veins and arteries too much. I know I'm lucky. I didn't need surgery, I'm no longer monitored by my neurologist and my life for the most part, has returned to normal. I'm grateful everyday. Last thought: When I went for my last MRI follow up with the neurologist and again I asked him about it happening again and why did this happen? He told me ... we don't have an explanation, sometimes things in life just have to blow up every once in awhile and then he showed me his wall of patient files, thousands of them and he said, most of these people I will never see again. It's a once in a lifetime occurrence and I think you are part of this wall.
  25. 6 points
    I’m with Weedra , grumpiness is a great sign for me. In fact my kids are best at saying to me ‘mum are you ok, you’re really grumpy’ , if I hear that I know my fatigue is notched up at Amber levels and I need to rest. If I don’t I’ll push through a red and that’s not pretty, I then have some pretty awful reactions where it’s like the brain throws a temper tantrum with me....I try not to run a red light anymore, but did early on and was left reeling. first I think the slower pace you have to adopt, are forced into after our events is not laziness. It’s the best pace you can manage at the time but because we were all travelling at 70 mph through life it’s like suddenly finding yourself sat in roadworks and contra-lane. You have no choice but have to slow. You have to stop when required. It’s all part of going forward. Be kind to yourself right now, the more time you take the better it will be down the road. Everyday fatigue for me is my normal. I can get a good nights sleep but still wake up tired so know every action each day is a bit of a horse trading game with my energy bank. What can I do, what do I need to drop if I do that, when can I get rest time, the internal conversation is just my natural state now. And I do loads now compared to post SAH. But I do everything more consciously and with consideration, I don’t rush and I don’t multi task...I am a skilled uni tasker who has little pauses afterwards. The best analogy is that of a battery pack. We damaged our charger, it probably can never charge back to its out of the box state, so you need to spend it wisely and know the capacity . the level of energy we can hold is unique to us as individuals. Some people will get back to being able to do everything in time but probably differently. Others won’t , time will tell you that but tiredness in the first twelve months is the brain telling you it needs some pause. You can’t see the bruising, the hurt , the damage...but it’s there. Let it heal .
  26. 6 points
    On this day 2 years ago, I had my “episode “ as I refer to it. Lol! I am feeling great, I am working, albeit in a different capacity and much less hours, but I decided a while ago that I need to do what is right for me! I have had wonderful support from friends and family. Having said all that, I still am not 100% of my old self. I still deal with fatigue, fuzzy head, anxiety and depression. This site has been a god send to me. Let me take this opportunity to say Thank You to all of you. We have all come out the other side of this, and for that I am thankful♥️ Hugs, Pat
  27. 6 points
    Hi all. Just want to say hello and say a little about my sah. Really not sure where to start, we retired to turkey 8 years ago and were in uk for Christmas last year, I don't really remember much at all of the few weeks leading up to Christmas but remember arriving at the hotel at Stanstead ready to fly home the next morning, walking into the lobby when it felt like someone had shot a rocket into my head. The nhs really did me proud and I was discharged early January after having a coil fitted. Couldn't fly home for 10 weeks and the take off and landing was so scary. After 11 months, I have really bad short term memory, when I get tired, I get stressed and confused and start stuttering. I write lists to remind myself of what I need to do for the coming week, and a diary to remind myself of what I did last week. I'm so glad my partner found your website. Reading some of the stories made me pluck up courage to ask him to write this. I couldn't write this much without forgetting where I was. Thanks for reading my story.
  28. 6 points
    Hello again everyone, back again around the anniversary of my NASAH, Non aneurysmal (Perimesencephalic) subarachnoid haemorrhage. Mostly good, practically 100%. The heightened sensitivity to high pitch noises persists but far less than before. Fewer and fewer headaches or warning of them. Stress is definitely a factor, for sure. Hope everyone else's journey carries on bringing more and more positive things.
  29. 6 points
    On this day in 2016 I had my stroke. Well, a headache actually which I was told was a stroke. A bit of vision loss and perhaps some memory obfuscation but otherwise I am all good. In a few days time I shall also have been tobacco free for two years. Yesterday I had been driving again for 4 months. I love it! Fuel costs are hitting me hard but I am not ready to go electric, despite the amazing torque those machines have! Internal combustion engine all the way for me! And a bon journee to you all.
  30. 6 points
    Win, I think that I was still doolally when my kids thought that this site was a good idea at 12 months post SAH! Little did I realise, that it would still be running in 2018! Think that I would have run a mile to be honest! It's been run on a wing and a prayer and when I was still recovering myself and still going through all of the issues that I see from members now. It's been a combination of good, sometimes not so good lol and steep learning curves with running the site... but it's been great therapy for me, to see how each of us, have passed on our own experiences, info, support and love for our fellow SAH'ers and their carers and family. That's why I continue with it. xx
  31. 5 points
    Hey Andrea, Hope the flight and the scan went well. I understand the missing mum bit as had my bi annual scan this year and first time for me without mum to check up on me, come along and just, well, just Be mum..but I could feel her strength with me when I was in the scanner if that makes sense, I had felt it before when at my worst and know you can always feel love that strong. Your lovely mum was no doubt watching over you. Four years is a big deal I think. Things shift a little, you have more knowledge of this version and how limits and changes are with you and things slow a little in terms of healing, but equally still lots of possibility and healing there to come. In the words of EC, ‘carry on, carry on’ Daff x
  32. 5 points
    Karen, also a huge well done 14 years on. As a post SAH Carer of over 8 years, the support from the Mods and members of BTG were undoubtedly a major help in Mrs Subs and myself dealing positively with Mrs Sub`s recovery. We had been struggling until Winnie directed me to BTG 4 1/2 years ago. We will always be in BTG`s debt … thank you so much. With over 3,200 members and so much of value within these forums … thank you for having the vision and dedication, given your own struggles with recovery. Subs
  33. 5 points
    Wow, Congratulations Crazy, on completion of a marathon. These wins will certainly be sweetest. May I ask you when your PMSAH was? I had mine in Jan 2019 and I have registered for a half marathon in August. I am able to run walk upto 10 K now (though my husband doesn't allow me to run alone anymore and my pace is no where near what it was earlier). I was actually looking for some inspiration and found your message. Thanks for that. I keep visualising my finish line. Hope I will be able to cross the line.
  34. 5 points
    Hi Crazy, huge congratulations on the marathon, I feel your pride! Your post sounds very like my journey. I too am a runner, was actually running when I had my bleed. When I went back to it 4 months after my NASAH people kept asking " why are you running?" " doesn't it worry you that it will happen again?" My longest run is nowhere as far as yours, my challenge was the Great South which is 10 miles. I completed it 18 months after my bleed and wept when I crossed the finish line. Running has been my saviour. When I am stressed I run, it's the one thing I don't need to tax my brain doing - just my feet and legs! I run with a group and we all run and chat - so we aren't going to win any races. We all say running is for our mental health and the fact it helps with physical health at the same time is an added bonus. I too struggle sometimes, even 4 years down the line I am still accepting what has happened to me and how it has changed my life. But as you say the little victories are the sweetest and bring the most happiness. I hope yours continue and that you manage many more marathons. Clare xx
  35. 5 points
    Congratulations on your 4 years. And for being able to live with such a positive attitude. This is something I am currently trying to alter my mindset to, as you are right, worrying does not change anything. I was 39 when it happened and turn 40 this coming week. I hope when I turn 44 I can make such a positive post. Take care.
  36. 5 points
    Hi, I will give you a slightly different look from the outside at what you have written, laced with a little irreverence, humour and a lot of love! Your credits, not your deficits, your positive changes and increased sense of who you now are, thanks to your nurses and your reflection! I take your points one at a time in the order you made them! 1) Your perception has changed and made you reflect on what is important in life - well done, you made the right choices with regards to work life balance, 2) Keep trying the salsa steps, it will sink in when you are in the right mood and frame of mind - get to work in parrallel with someone who knows the steps and do them at a slower pace until it sticks. Instead of Salsa steps call them Spanish steps - if Spanish is going in call them Spanish! Worth a try! 3) This is part of your brain telling you it recognises things in their familiar place. If it works for you then keep doing it! Your parking space can be called the Spanish spot! 4) This is good - you have their attention! 5) These emotions display a level of honesty, just be mindful that perhaps a little more tact is called for, not a change of opinion. People often blame others when they want to deflect fault from their own actions to yours. They know your weak spot - do you know theirs? 6) We all do that, it's just you are more aware of it now. You remember the important ones but not the ones that are less significant to you. You can't remember everyone, don't beat yourself up about it. If needs be, write their names down and why you need to remember them. If there's no reason, then there's no point to remembering them - therefore no worries so go back to point 1 - laidback! 7)Nothing wrong with that - repetition transfers short term to long term memory thus eradicating the problem at issue! Great! Laugh - because it's a comedy - it's good to laugh! 9) Another good point - why keep up with toxics - getting rid was a good decision - well done! 10) With regards to your Spanish again - buy a Spanish car and then maybe you'll remember where you left it - (in Spanish of course!) Lateral thinking! What's Spanish for "Credits not Deficits?" It's just a different way - and hopefully more positive way of looking at things! Good luck Macca
  37. 5 points
    I showed this to my wife. It does a great job of explaining why I “check out” sometimes. I just tell her I’m feeling stupid. Sometimes I think I maybe shouldn’t have fired my nuerologist.
  38. 5 points
    Thank you both for all of your kind words and comments! It’s great to hear your advise, and I will definitely take a look at the threads you recommend and show them to family. I have been drinking as much as I can, usually trying to hit a 2ltr a day target. I have also notified DVLA who have contacted the hospital and received info from them, I’m just waiting for them to make their final decision... but who knows how long that will be! With regard to my SAH itself, the reason for the stent was because I had a deformed artery with four anyerisms off of it, and one had bled, but they had to stop the other three from doing the same. Very scary, and absolutely no warning! On the plus side, my recovery is going very well. I just need to learn to rest and not push myself too much, which is hard when you’re not good at sitting still and like your independence. Happy days! Good luck to you too with your ongoing recovery. Kind regards Sophie
  39. 5 points
    For me it is like a brain fog when I can't think on my feet, take extra time to answer questions when someone's talking to me. Almost like the words are hidden. The other sign for me is grumpiness! When I loose my cool because I can't think straight, I get sent to my bed like a kid!! Half-hour eyes shut is usually enough to reset.
  40. 5 points
    Hi Everyone, Been following the site for some time and very grateful to read the stories of fellow survivors. Time to share. My SAH (anterior communicating artery) was just over four years ago and was coiled within hours (not even a stitch in my groin - how does that work?). Phase-returned to work in a busy office after six months and reached full-time after eight. Despite adjustments to my working day and an employer who tried to understand my challenges, I struggled to keep pace, concentration and accuracy and my confidence was shot to pieces. I was lucky enough to get early retirement on ill-health grounds close to my fourth SAH anniversary. Now in retirement I'm volunteering two part-days a week and the new post-"bang" me is very comfortable with revised daily routines. Ongoing challenges include a constant (fortunately) low-level headache. Luckily I can just live with it as paracetamol doesn't touch it! Feels like my brain is being pulled downwards and is definitely worse if I haven't taken on enough liquid. I do get fatigued and often take a nap in the afternoon or early evening. Short term memory is not strong and I often start chores, get distracted and forget what I was doing. I can still recall details from all the FA Cup Finals in the '70s though, so that's ok! Pre-"bang" attributes (unfortunate tendencies toward grumpiness, unwarranted anxiousness and worry, struggling to remember names and numbers) are all enhanced, though I guess this happens with age, anyway. Still struggle to focus in busy places and completely unable to do more than one thing at a time (the pause button is in constant use if the family are seeking my attention during The Big Bang!). Great site, hope other new members are encouraged to share their experiences.
  41. 5 points
    Clive, Our stories are similar except I retired early (59) and had my “bang” at 62. I didn’t have to transition back to full time work. Sure changed my plans though. I am 67 now and have adjusted to my deficits pretty well. I’m not friends with them, but may as well learn to tolerate them.
  42. 5 points
    Thank you all so much for taking the time to read my little story, it’s so nice realizing that there are people who understand what I’m going through, I’m sure because I look the same on the outside people who don’t know me well don’t realize the changes that have happened on the inside. Trying not to get too stressed about the procedure, the worst part is the waiting and the what if? Thank you all for being there. Xxxx
  43. 5 points
    Well, I hit the ten year mark today. Overall I'm doing quite well, though last week I had my first major anxiety attack in quite some time. It was bad enough to send me to the dr, who prescribed better living through pharmaceuticals. Whatever it takes to keep on keepin on! Many thanks to all of you for this site and for making so many of us all across the miles keep from feeling alone. Love, Colleen
  44. 5 points
    Hi Charlie. I know how you feel, and I gather everyone can understand how you feel because we have all been there! The advice you will get here is a soothing balm to your mind ( it did wonders for me). I found that at 5 months out, I still couldn’t work my regular hours ( I am a preschool teacher). What I learned is that it takes a long time for the brain to heal. You will get stronger, but you need to be patient with yourself. Know that it is normal to feel anxious. I tend to feel more anxious close to the anniversary date of my bleed (2 years on the 28th of this month). I had to change my job as I found the classroom too stressful, and that was difficult after 30 years - but I am so much happier now, Different can be good too ? You are still healing, and learning your new normal. I am pretty much back to my old self, but I know that there are times when the fatigue and fuzzy head will creep up on me, and that is fine too. I just rest that day and if I need to nap then I do! I found visiting this community has helped tremendously. I am sure you will discover this too. Good luck in your continued recovery!
  45. 5 points
    Hi Everyone...back home had my op on Monday".very sore and tired glad to be in my own bed..they didn’t coil they used a Web but told to stay in bed and rest and drink lots of water. Going to sleep now xx
  46. 5 points
    What a crazy story! i will pray for you. A good point about people in yours-my situation is that we look normal. So it is easy to be surprised when the person has memory-personality problems. When you break a bone, you are in a cast. And everyone sees the cast and expects you to be disabled. But when you have brain damage, you look normal from the outside and you surprise people with your deficits.
  47. 5 points
    After such an attack on the very core of your being (for that is what your brain is), a few weeks is nothing in terms of recovery and you will see from reading all the different subjects on here, that recovery is a long, slow process. You can't just get up and carry on as though nothing has happened. It just doesn't work like that. What you need more than anything is time. Time for your brain and your body to heal. Time for you to assess and make changes to your lifestyle to accommodate the 'new you.' This event has happened and you can't turn back the clock. But you can shape your future. You are right to isolate the feeling of being 'dumped.' Most doctors have not themselves experienced a SAH, but they know what they have or haven't read. However, they haven't 'lived it' like we (and you) have. The doctor's role is clinical, not social, and that is where other agencies should have a role, but often don't, and the reasons often boil down to who is going to pay for it. Probably worse in the US than in the UK, but the existence of this site is an example of the paucity of support post SAH anywhere. The brain injury you have suffered isn't visible and now that you are back up on your feet, others think you are back to normal. But you aren't. Probably, to a clinician, you appear to be ok and all the wires are in the right place and that's why they think you are ok. But there is much more to it than that. There are outside factors such as emotions, headaches, fatigue, families who care, but without the understanding of the consequences of what has happened to them and to you. So you have to tell them. You need to talk to people, to communicate to them that things aren't back to normal, they aren't the same, and that you need more help to adjust. That includes your family, your work colleagues, friends and your doctors. You need to tell them that you look the same but on the inside you are not. At the moment, it seems you are taking everything on yourself and everyone else is just blindly going on as though nothing has happened. That has to stop. If it doesn't, you will quickly burn yourself out and then where will you all be? Work out what you can change what, you can delegate, what you can shut out. Take stock. This isn't about admitting defeat or that you are somehow a lesser being than you were before. You aren't. You are probably more of a person, stronger, older and wiser. But none of us can go through life without changing. Some changes are gradual and some come upon us more abruptly, as in this case. You don't need to see a professional necessarily, but just sit down and re-evaluate where you are so you are happy in yourself as to where you sit and then talk to the people around you and make the re-adjustments needed to help you cope with the change your body and brain have forced upon you. Don't bottle it up, just tell it like it is, like you have done on here and tell those around you that they have to change too, to a lesser or greater degree, because things can't just go on as they have before. Things have changed, circumstances have changed, and therefore the solutions have to change too. If you feel up to it, that's taking control and is called leadership. That's my view, looking in as an outsider to the situation as you describe it. I wish you luck. best wishes, Macca
  48. 5 points
    It's been almost 20 years since I had my bleed and i still panic every time i have a even the smallest pain in my head. I guess you can say im one of the lucky ones i survived with no noticeable problems. I am weaker on my left side but not much. Im glad i found this site. I didnt know that there was anything like this.
  49. 5 points
    Congratulations on both of your special Anniversaries Macca, you are a very special man, I can’t thank you enough for always being here for me, I love your ‘way’ with words, your understanding and showing me how to look at things from a different perspective. Thankyou, thank you thankyou Jan xx
  50. 5 points
    Congratulations Macca on your 8 year anni-versary and your 6th wedding anniversary, I hope you have a wonderful day, I also want to thank you, over the 4 years that I have been coming here you have shown me great support and for that I am truly grateful, you have a wonderful way with words, your honesty and empathy with people is just amazing. You are a wonderful person and an inspiration to us all. Wishing you well Macca Love Michelle xx
×
×
  • Create New...