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  1. Today
  2. Thank you Crazy. I will definitely let you guys know when I have my big moment. Could not have survived without this site.
  3. Read this today and it may allay one's fears of taking Aspirin after a brain haemorrhage. Report in The Lancet. https://www.bbc.co.uk/news/health-48349792
  4. Yesterday
  5. Hi Melissa, I had my bleed 2.5 years ago (Oct. 2016). I don’t remember much either, and it truly drives me crazy. I’m slowly learning to let it go, but it is hard🤪. I was in the hospital for one month- 26 of those days in a “quiet” room. No stimuli whatsoever ( no lights, no reading, t.v. and was only allowed to get up to go to the bathroom, after 2 weeks) I also ended up with vasospasms, but had no idea what that was. It wasn’t until I was at home and reflected on what could have happened to me, that the anxiety kicked in full force. That is when, by the grace of God, I stumbled on this site. I found out I wasn’t imagining my symptoms, and I wasn’t alone💕 I’m still having memory lapses, difficulty retrieving words, fatigue and I think that is my reality now.....but I am alive to experience these things. I have had to redefine my career ( preschool teacher/ special needs support worker-36 years) still working with preschoolers, but in a different capacity and less hours. At the end of the day, know that we all “get it”. There is immense support here, because we have all walked in each others’ shoes😉. I am looking for a therapist, to deal with some of this anxiety and I really feel that part of our medical treatment should have a mental health component to it. Sending you big hugs, Pat
  6. Last week
  7. Cheers Chris. Can’t keep us runners down! Great work mate! AMI, I had my PMSAH July 28 2018. You will get to that finish line mate. If you can get to 10k now, you’ve got it. Just be ready for a smile that you can’t wipe off your face and a few tears as well. Well done!
  8. Hi Melissa, I had my SAH just 2 years ago now. I also had a severe vasospasm just a few days later. No stent, no surgery but did have a angio that put verapamil into the vessels in my head to help stop the vasospasm. I also have energy problems, making frequent stop and sit periods while trying to accomplish a task. If I don't allow myself time to rest I end up in a bit of a state feeling mixed up and anxious. I try to recognize when I need it but sometimes life just moves too fast. Looking at the bright things in life is so positive, your daughter graduating and a grandchild...congrats The lingering effects of SAH is so difficult, but we are so fortunate. Melissa I struggled with not remembering what happened to me, I still do. I kept thinking I would remember but now after 2 years I know that is not going to happen. I keep thinking I should be glad not to remember, perhaps it is a gift that I don't. Best wishes Melissa, Jean
  9. Well it's my 9th anniversary in 4 weeks time. Doesn't time fly when it means nothing anymore? How much has changed for me? Lots and lots. I've had a rollercoaster ride of a recovery. It used to be more downs than ups. But now? Wow! What a huge difference it's made. Although I'm still struggling with so much I've adapted, I've overcome and I've improvised too. It's been really difficult at times, too much on the odd occasion. Even now, it hurts to know I'll never be the man I once was! The new me has had several reincarnations, I've scrapped and reborn myself over and over again. This time it's much more stable, I have many more new friends in my life. All are very caring and loving. I lost many due to this condition but it's their loss not mine. With their rejection I found a new path each and every time. So I got better and better. My recovery has been fraught with dangers, concerns ultimately I now know I still have a long way to go. I've been scared, I've cried, laughed, worst of all I quit at one point. But now I love too. This has helped me so much. Something I never thought I'd ever find love again or a loving partner, that is understanding, warm, kind, considerate, loving but most of all a guiding spirit. I'm not out of the woods yet, lots of journeys to take and conquer. I've made mistakes, I'll continue to make mistakes, I will learn from them, gain knowledge from them. Best of all, 9 years on, guess what? I'm happy, I smile, I do much more today than I ever felt possible, In the beginning, I couldn't even brush my teeth. Now I can make extravagant meals, hold conversations, cope well, not as well as most, but I'm getting there very slowly. I'm a crazy old Coot and my friends love me for it, the customers love me as do their kids. Gosh even I love me too. I still cry a lot when I fail, I hide my failures, but most see me struggling and help me up to my feet again. Best of all I've learnt to waffle, I talk too much I write too much, thank you all for being my friends and reading my anniversary post. Love Michael Xx Ps. If I can do it we can all do it, practice takes time, time is in abundance, make the most of it, you never know what's around the corner...
  10. Congrats on the anniversary. I wish you continued improvements as more years go by. Chris
  11. Earlier
  12. Thank you all for your kind words. It is a journey to be sure. @ClareM I am working with my neuro to find the right treatment for everything. It depends what day you catch me as to how that is going😆 I know am a big siesta fan. In fact I have one on the floor of my meeting room at work all the time. Lol Wishing you all well.
  13. Hi Macca, Thank you for the outline . I do some of the items you listed but you have showed me a lot more to try I try my best to not bottle things up but some days I feel like I'm a broke record with the same ole story. This site has been a huge help to me and I am so thankful i found it. I just wished that I could find a face to face support group. Thanks again and have a great day, Melissa
  14. Hi ClareM I can't reduce my hours due to the fact of my insurance and financial needs. Yes my boss is very supportive and I'm thankful for that. I am thinking about visiting my Nero doctor and discussing this with him. Along with some smaller item ...lower back pain and vision change again. I was just hoping this far out I would be back on track or at least lined up right on a new track. Thanks for the support its nice to talk to someone else that have and are having the same issues and its amazing it world wide. My location is North Carolina Melissa
  15. Ah Melissa, Fatigue and memory issues (particularly short term memory). these are old favourites of SAH consequences that take a lot of explaining to others, the main problem being that others cannot see the problem therefore they think it doesn't exist! it's like looking at a car, trying to get in and start the engine and then realising it's broken down because there's something wrong with the engine! There is no one easy answer to this. It all takes time, time and more time. it will possibly get better but will not likely recover to its pre-SAH best. I find keeping a diary helps - just bullet points, to help you remember. Take regular breaks, even if only for ten minutes to clear your head, stay hydrated and do what you can - not necessarily what others want you to do. When you feel up to it, sit down with pen and paper and write down the things you do in your job. Consider the following: Can you organise yourself better? Can you organise your job, and individual tasks, better? Ie what you have to do (mandatory), what you could do (necessary but not urgent), what you want to do (luxury, dressing items that would be nice to do but are not essential) Can you delegate anything to others? Can you change the timing of any tasks to when you feel better able to deal with them? (ie in the morning when concentration is best, or when a specialist is in the building that you can ask questions of if needed) Can you make use of a 'dictaphone' to record things you need to do later or remind yourself of? Can you get a PA to help you at all? Not an exhaustive list, but just pointers to help you. As for mood swings they will be helped by feeling more under control of the things that you can influence. Strain comes from things you cannot influence, so concentrate on the former. That is the benefit of what I have just outlined above for you. It might not be the whole answer but I am sure it will help to a degree. Don't bottle things up, talk to people and keep reminding them that though you are improving there are still hurdles to overcome. Keep communicating with people. problems are best nipped in the bud, not when they become too big to handle. what you must guard against at work though is that you don't overdo it to the point where they think you aren't coping at all. What you will demonstrate by doing some of the things I outline is that you are doing your best to help yourself and that you are managing things as well as you can. Managers are always prepared to help those who are seen to be doing their best and are not just waiting for the benefactor's hand to lift them. Good luck! Macca
  16. Hi Melissa Have you ever considered reducing your hours? Is this possible or not viable financially? I used to work over 40 hours a week and have gradually reduced since my bleed to 30 hours. I do those hours over 4 days with a midweek break, having Wednesdays off. I find this works perfectly for me - I can't imagine ever working full time again. It may not be that your work can accommodate this or as I said it may not be possible salary wise. It's really worth thinking about it though, one of the best things I did. Without giving medical advice it is possible that the fatigue you are suffering is causing your mood drop, so think about more rest and taking time out. Sounds like you have a great supportive boss. I hope you start to feel a little more like yourself but remember it is a new you. Clare xx
  17. Hey ClareM and Louise, Thank you both for letting me know that I am not alone. ClareM I am Staff Assistant for a small Community College in my home town in which I work 38 hours a week. Yes I too get my words all tangled up if I get the least bit stressed. However I do have a super boss and she can see when I am having a hard day and will tell me to go for a walk and relax or let me take a long lunch. She has even sent me home just because she knows that I have had a long week. I try my best to built up my strength but by Thursday I do good to make it through the day and just collapse when I get home. I think my hardest thing to deal with is not remembering some of the past and also I have a hard time remembering the day to day information which seems to aggravate the family more. I can't explain it to them and all they can see is how much I have improved. I have also started to have a lot of mood swings that I can't seem to control anymore either. I was really hoping that I would be more like myself by now and have things under control better. Thanks for letting me vent I am very thankful my life is no worse than it is and I know I don't sound like it but I truly am Blessed. Hope everyone has a great day. Melissa
  18. This site is good isn't it Charlie, I came on here singing songs I wanted played at my funeral !! lol. Then I saw others laughing about bleeds and their life and that alone helps us !! To know others have been there had similar feelings, and came out the other side laughing xx.. I got my smile back xx Good luck Charlie and keep a smile for bad days, as we are Survivors XXXX Somedays it doesn't feel like it that's when I have as Sarah puts it Siesta xx Well done you and keep going xxxxx Monsanto and glyphosate court case. .Alas too late for my dogs but not too late for them to realise it !!
  19. Hi Charlie Congratulations on your one year milestone. Thank you for sharing. Wishing you well with your ongoing recovery. Take care Tina xx
  20. Hi Joan Glad you managed to get back onto BTG and so pleased that all went well for you xx Fingers crossed all is good with your scan results too. Take care and go steady. Love Tina xx
  21. Hi, and thanks for your up-date. So glad you managed to get your BTG access again Please let us know how your scan results go … Keep listening to your body and do take time to rest and recharge Subs
  22. Hi Charlie, congratulations on reaching the one one year point and treating yourself kindly. I'm glad you do have lots of support from friends and family, even if some have dropped off along the way. keep looking after yourself, I'm finding that when people are dismissive of my needing naps I just tell them I'm following a fully Mediterranean lifestyle with siestas and not just the food 😆 Sarah x
  23. Congratulations on your year Charlie. I think the first year is the hardest and you certainly do find out who is there for you in friends and family. Sorry to hear you are still suffering from headaches, have you talked to your neuro team about this? Hope you can get some relief. Good luck for the future, hope things improve, just be kind to yourself. Clare xx
  24. Hi everyone ...sorry not been on but I lost my password again but hope this time it’s worked. I had my op on 15th October....I had a “web device” put in and was only in 3 days and have done brill ...just the tiredness but am fine now. Just waiting for my scan results which I had last month. Hope you are all ok xxx
  25. Hello Charlie, and thanks for sharing your thoughts after one year. Great to hear that you have found BTG has been a support throughout the year, and that your family and friends have been there for you too. Everyone has their own route to follow as they find ways to deal with SAH recovery ……. and whether progress is slow, steady or challenging...time does bring a measure of healing and acceptance that life has changed. Your comments will help others in their early days and keep us posted about your own journey. Subs
  26. It seems unbelievable that it has been a year. Lying in my hospital bed and then coming home and being told I will go back in a year. I didn't really believe I could survive a year I felt so bad but here I am. It's been without question the toughest year of my life. I am a different person to who I was, strangely I don't see that as all bad. I know what and who is important now. I found out who my friends really are and thankfully I have lots of them and an amazing family. When I read about people who do it with little support I wonder how they manage I have been left with a brain that does some crazy things, weird sensations and awful head pain at times. The fatigue dictates how I live my life as I have to rest and can't go a full day without a nap. My neurologist thinks I might have nocturnal epilepsy so that is a new problem to overcome but I made it. I worried today I would be an emotional wreck. Well it's not over yet but with lots happening at work, kids to get to school and a generally crazy morning I find myself feeling grateful. Over the last year I have read so many posts saying just be grateful. If I am honest they have made me uncomfortable as after something like this it's very hard to make yourself feel a certain way. I was dealing with my recovery and still am. So I will put not put pressure on myself to feel grateful but to always feel empathy for others and their journey. Thank you for this site. It has helped me enormously when I have needed to scour for information and others who have been through the same thing. I hope to be able to support others in their early stages and I am sure I will continue to have questions. Everyone always says the first year is the worse but one day at a time for me still. Let's hope today is a good one.
  27. Told you this group was amazing Kerry - how do you think I got through it all xx
  28. Hey Chris. Thank you for that. I do hope there is something, I feel I'm not myself but I can't make anyone understand how I'm feeling. It's so difficult to find the words to describe the feeling in my head, of I say dizzy they go to vertigo or migraine and I don't believe it is. I just don't feel me! I do want to say HUGE THANKS to everyone who has replied to me. This is the first group that I feel actually hears me.. Loving all of you right now x
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