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Everything posted by Swishy

  1. Thanks Win, I will keep up the fight and I know I am lucky as I can get up and move about and even go to work a few days a week...Sometimes I pay a price for it but...worth it to be living my life...Actually have a vacation planned next month...I always get a bit nervous when I go away but I will go..and I will have some fun Your recovery is so inspirational and the good humor you share with us all, well I love it... Who ever said to you "what makes you think you can walk again" perhaps is in the wrong occupation. Hope is what gets us all up in the morning, it is what makes the a rainy day bearable...because we hope it will be a good day and that the sun will come out... Hope you enjoyed your garden walk and thank you for the words of encouragement...needing them xxx Jean
  2. Hi Daffodil, Thank you so much for the words of encouragement. I feel like I am doing well but I do know the topple over feeling. I am so encouraged by the fact you are still improving and still working on improving. I get stuck sometimes....some days....I know I need to keep going and working on it...The good weather will help. A dog is great as they have to go out rain or shine haha...I live near a pond and am hoping to see the owls that are reported living there, a bit of a bird geek I am Thank you again...I tell myself everyday "I am a survivor" xxJean
  3. Hi All, So here I am coming up on 2 years ago having my SAH followed by vasospasm. Quick recap...8 days ICU 2 weeks rehab then home..ended up in rehab because I couldn't sit up due to core weakness...balance was also off, somewhat better but still a bit off... I have some vestibular issue which probably contributes to my balance. The core weakness seemed good enough I guess. So I recently attempted another round of 6 weeks of Physical therapy which began for back pain and quickly came back to my core weakness. The core weakness seems to be contributing to my back pain.. Anyone with this going on? I don't really feel any difference in strength after 8 weeks of exercise. I will be getting an injection to try to help my back pain and been referred back to neuro. Truth I really didn't even want to open this up again and look at it but am going to do my best. Any thoughts or experiences? Thanks Jean
  4. Love what your doctor said to you....I will go for being part of the wall...as survivors it is a good place to be...be well❤️
  5. Hi Alison, Congratulations on 4 years...sounds like you are doing well. I think the fear of this stays with many if not most of us...I will be two years out in May and like you no cause was found, perhaps making it more worrisome. You are right, I think, that not everything in life has an explanation. My thought is that there is a reason but the doctors don't know everything (they know a lot, but not everything)....they continue to learn. Mine happened when I was 64, it was the most frightening thing that has ever happened to me, it will stay with me always. I agree with you not wanting to live in fear...I think it is a day by day thing, everyday pushing a bit further back, so it will become something we don't think about everyday. Working on it also Best wishes as you move on enjoying your life, you have lots of life in front of you...My best wishes for a happy healthy life. I liked reading your thoughts, remember you are a survivor, we all are. xx Jean
  6. Wonderful posts Frmertd and Win you inspire me so...thank you, thank you all... Subzero love the God grant me the serenity prayer also, I say I say it often.. We are survivors and it took me a while to stop feeling like a victim....Can't say I am 100% there, some days closer than others, all your words help so much with that.. xx Jean
  7. Hi Paula, So glad you found BTG. I am sorry to read of your aneurysm. Sounds like you had great care. You are doing so very well so early in your recovery. Be so kind and patient with yourself, this is a major trauma to your brain. There are so many wonderful people here all so willing to share their experiences as they recovered. We are all survivors here. Wishing you well as you continue to recover xx Jean
  8. I flew 5 months after my SAH and vasospasm... I was very worried and I got a "have a good time" from my team here in Boston. They did not hesitate to say i could fly. In saying this I realize we are all different and for sure check with your team and follow their suggestions. I was afraid but all plans had been made. It was a 5 hour flight. I had no surgery, one week in ICU and had to go to rehab...I am still nearly two years out nervous to leave the country, insurance worries, but I do worry . Your doctors will be your best guide..best wishes, you sound like you are making a very good recovery. Jean
  9. Hi Nikki, So happy you found this site. I have been following the conversation. I am sorry to hear you are feeling a set back. Our brains, I think, heal differently from anything most of us have experienced. I like to think of my brain as the air controller tower at the airport..(crazy right) but it has all these different things to watch and hear and smell and on and on... so when injured it is functioning like a couple of people called out sick...makes it hard and then there we are expecting 100%.... Time has been a miracle for me, and I was very impatient. I will be 2 years out in a few months...I feel I can still improve..I like you did not have surgery, I had a small SAH but then a few days later had a severe vasospasm, this knocked me into ICU and rehab... I hear determination in your entries Nikki. I wish you well. Jean xxx
  10. Hi Norma, Best wishes on your surgery and for a great recovery. This site is a wonderful resource. so many with such insight and words of kindness. Please let us know how you are doing. {{{hugs}}} Will be thinking of you... Sincerely, Jean
  11. Hi, I returned to work after about 8 weeks. I was not a full time employee working 28 hours, but on the overnight shift so that makes it harder. I started back working half shifts for a few weeks then went on to 24 hours, let 4 hours go. Saying this I must tell you I was 64 years old at the time of my event. I really didn't realize I went back too quick until I looked back later at it. At 4 months...6 months...a year I was so much better. Fear of losing my job was my biggest reason. Just be kind to yourself, it is a big deal and the brain needs time.. My best wishes as you continue to heal. Jean
  12. Hi Joe, You have my empathy working 12 hour shifts. I did this for sometime way before having my SAH. More than half the people I work with do work 12 hour shifts. Most of them are younger than me...25 to 55...it is difficult for them, even the younger ones. Also doing 4 12's in a row is murder...Can you split them? Another thought , the computers we use allow us to stand or sit, I find this helpful..I hope you find a solution, it is a tough schedule. Best wishes as you move forward, Sincerely, Jean
  13. Congratulations Super Mario...I am repeating but truthfully you are such an inspiration...15 years...wow, makes me more hopeful...You were one of the people writing me when I first came...I feel like I fell into the arms of all those that reached out to me. I send you best wishes for good health and happiness, .. xoxo Jean
  14. Hi Zoegrove, Welcome to BTG...So sorry to hear about your terrible experience. You sound as if you are making a great progress, our bodies are amazing. I too experienced tremendous guilt after my SAH and Vasospasm. I kept telling my husband "I'm sorry" I remember him telling me to stop it wasn't my fault. This continued for maybe several months and then I began to get a better sense of the whole thing. I work in the medical field so I am always on the helper side of the fence, but there I was being the one who needed help. It is so difficult to accept it sometimes (sadly perhaps when we need it the most)...I did get there ... The whole experience is a traumatic not just for you and me but for all those who love us. It takes time, your experience is still so new. Give yourself the gift of time, it made such a difference for me, I wouldn't have believed it. I will 2 years out in May, I am so much better with all these feelings. Best wishes for you and your family as you move forward and remember you are a survivor...it is a big deal Sincerely, Jean
  15. Julian, I had a similar experience at a baby shower I was at last week...not from the noise ... seemed to be with all the motion (people walking back and forth) and when I began helping to clean up (also walking back and forth)...I was very overwhelmed and feeling mixed up (an old feeling I thought I had left behind)...but I sat and regained my sense of stillness... I think ear plugs are a good thing to have in my bag...I guess we keep on learning how our new brain works...Sounds like you are making great progress Julian...babies to hug...so wonderful, mine are all grown, I miss it.. Win you always make me smile, would love to hear you sing Jean
  16. Hi Penny, I was told not to take too much Tylenol as it can actually cause more headaches. I had what I would call pains in my head, more than an aching head. It has improved significantly but not totally. I will be 2 years out in May. I feel what I term "swishy" sort of feel like I am walking on a boat. I still have this, truth, doesn't seemed to have changed much. I will say I have gotten to tolerate the feeling mostly, so I am not as bothered by it as I was. I am so sorry to read you have these symptoms, they are bothersome as well as worrisome. I hope as time goes by they get better for you. As Skippy said water is so important, make sure you get enough. best wishes, Jean
  17. Hi Angela, It is a long road that gets us to one year out. It was an ever changing year for me and I felt I had reached a mile stone when it arrived, still realizing I still had a journey before me. As I get close to my second year in May I realize I am still making strides and also that I am getting to accept some of the changes within me. You are doing so well working to improve with brain games and keeping a diary. I hear your struggle with self confidence. I struggled with that as well but have gotten so I can go to the store alone but it can be too much when busy and I have to rest when I get home. It is all one foot in front of the other everyday. I hope all goes well for you and you recover quickly. Take care and please know you have a place here to talk, vent or just to say HI... Sincerely, Jean
  18. Hi Todd, Welcome to BTG...So sorry to hear about your PSAH. It is a game changer for most people I think. Keeping good contact with your doctor and a journal on how you are feeling is great advice from Casey. It can be stressful when you are put on the spot in an appointment to remember everything you wanted to discuss. The water and rest for sure help. 6 weeks is a very short time in terms of your brain healing. These events take time and patience with yourself. You sound like you are recovering very well. Best wishes as you progress and please check in and let us know how you are doing. Jean
  19. Thanks so much Macca, your words have been so inspirational to me....I can't even explain how much I appreciate it. Sincerely, Jean
  20. I too have struggled with feeling it is easier to just stay home. I think some of it has to do with the fact that when I am up and moving around I am a bit off balance (just doesn't feel like it use to feel) I am 18 months out from my SAH followed by Vasospasm. I must also say the more I encourage myself to do it the more comfortable I have become. Is it the same as before, no it is not. I am searching for my new normal, having accepted the old one has changed. I give myself permission to refuse certain things but I am a social person and know I won't be content spending too much time alone. It does get old trying to educate people about what happened to me. I don't spend much time trying unless the person is someone who is close to me or someone I will see frequently. I am the only one who really knows how I feel, and that is ok. I am better and happier than I was a year ago and looking to be my best self possible. Everyday is a challenge but I am up to it (mostly haha)... Jean
  21. Congrats Johntaras on 9 years. Your post gives those of us who are way earlier in our recovery hope. Working 3 days a week is awesome, never say only. You are doing it, you survived . Best wishes for 90 more. Best wishes Jean
  22. Hi Rook, So happy your mom is home..she is defying the odds everyday...remember, stay greedy, she already surprised everybody. Nobody can say for sure when someone will stop making progress. She is so lucky to have such a wonderful caring and supportive daughter. I send you both good thoughts and prayers... xx Jean
  23. Hi Coleen, Congrats on 10 year. That is a milestone for sure. I like what you said "keep on keeping on"... great words of inspiration. Be well and best wishes to you. Jean
  24. Hi Chris, Wow what great encouragement/information...I wish someone would have given me a piece of paper with those words on it when I left the hospital. I am also in the USA..Boston.. Thank you Jean
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