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About Swishy

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    Established Member
  • Birthday 06/11/1952

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    Boston USA

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  1. Hi Ben, So glad you found us. You will be the one who knows if you are ready to go back to work. Having a bleed is so different for each of us, we all have a different time line. I went back to work before my Dr. thought I should, turns out he was right but after a couple of iffy months I was okay and still working. I am quite a bit older than you 66, 64 when I had my bleed. Even though you feel lucky for not having any major impairments when there are things not working the same as they did before in our bodies it is worrisome. You are early in your recovery, our brains are an amazing organ and will keep healing. I wish you well as you continue to recover and get back to your bike Jean
  2. Hi Irene, I found it very comforting to read others stories, I still do. Now that I have my wobbly little sea legs under me I am so happy to reach out to others as they come on board. xx Jean
  3. Hi Irene, Welcome, glad you found this site. So sorry you had that happen to you, happy to hear you are getting good care. There are so many of us here with different stories, we are all survivors I had my SAH 2 years ago...it was a sudden thunderclap headache, no other symptoms...I was so fortunate as it stopped bleeding all on its own and after 2 days in the hospital I was released, counting my blessings thinking I had dodged a bullet (which I really did)...shortly after getting home I had vasospasm which was more complex and required a week in ICU and 2 weeks of rehab... So here I am 2 years out with some invisible issues going on, numbness, off balance but I survived and I am living my life...went back to work even. Good enough to welcome you and let you know we understand. Please go through this site and read the stories of others, perhaps more like your experience..I have found the folks on this site to be so supportive and full of desire to share and support.. So I will say again Welcome to BTG. Enjoy your day, Jean
  4. Hoping the US catches up to you...Flying in a couple of months and it does cause me distress to be with all the people rushing around pulling bags...lots of overhead announcements...I am slower walking and if anyone bumped me I think I would topple (not sure if I would but feel like I would)...
  5. No cause was found for me also...They even gave me a piece of paper saying it... my thought...something caused it..but as Crazy says "all we can do is fight on" we are survivors... Jean
  6. Huge congrats on 14 years, you are beautiful ..You sure do give me comfort...thank you for sharing. Jean
  7. The brain sure does move in mysterious ways...Great we are hear able to talk about it .... still leaves us with why?? I am thinking I will never know... Jean
  8. Hi Subs, Thanks for reminding me to look back over that link... I think I am getting a bit wacky thinking too much about it haha...truth... Jean
  9. Well I am thinking that perhaps the number of people that have had vasospasm on this site are few. I was hoping to read others experiences that were more like my own... I don't think I will ever stop trying to learn more about what exactly happened...I wish I could just let it go...not think about it. Jean
  10. Hi Casey, Good to hear from you. Sorry for what happened to you, must have been terrifying... When all was said and done and I returned to Mass General for my first follow up with Neuro I was so blindsided. I mentioned to the doctor that I was especially fearful as I had now had 2 strokes...and he said not really (me???) he told me then about the vasospasm and that it was really all part of the same stroke...I had to go home and go on the computer and look it up...took me weeks to be able to do it. If they were expecting vasospams for me no one mentioned it when they sent me home from the SAH. My initial follow up appointment was set for a month...but as I said I was back in the ER way before that.. Such a complex event(s).... Stay well.. Jean
  11. Hi all, Many of you know but I will give a brief history...SAH May 2017, small stopped bleeding on its own, left me with no problems...3 night in hospital a ton of tests....sent on my way with only meds looking at trying to minimize head pain.. RCVS 3 days after getting home, they said it was severe, I had an angiogrm that went into my groin up into the areas in my brain that were in spasm and bleeding and put verapamil into the vessels...total surprise to me, no one had mentioned this as a possibility...8 nights ICU, don't remember about 4 days, 2 weeks in rehab...left me with core weakness, couldn't sit up, balance issues and sensory issues. I also have problems with being overwhelmed, such as with a lot of people moving around, or walking past me and terrible fatigue... So I would like to know if others here whose story may be like me have had a SAH and RCVS ...did you know you were at risk? I was just so blown away with it. How did you recover from one or both?....I am in the US, so I am wondering if treatments differ..I was at a very prestigious hospital in Boston that has a first class neuro department.. May seem odd for me to be wondering about this after 2 years but I still am...I guess I am still trying to understand it all.. Thanks Jean
  12. Hi Diane, I know exactly what you are talking about, friends and family thinking I am the same as before the bleed. I share this with you. My husband does get it but I think he is the only one and it has taken him time. Perhaps part of this happening is that they really want us to be the same. I am trying to understand their perspective, I am hoping all of us get it at some point. Invisible disabilities....It is difficult...I feel like I am walking on a boat all the time, I cringe when people walk too close to me or too quickly past me, many changes. We are still the same people, just struggling trying to find a new normal. Time does help. Sleep and knowing when to rest is so important and we have to be the guide for our loved ones. We have to say it, I need a break or let me sit for a while, not always easy. I am trying to work as long as I can, like you building retirement, hoping not to run out of money, everything is so expensive. You like me live in an expensive area.I did cut some hours and don't go in extra any more. I work at a hospital and I am sure they don't like it but I will have my doctor back me if I need to. I am fortunate to have all of my children launched, I am older than you 66 now, ugh don't know how that happened haha... One day at a time Diane, we have to be gentle with ourselves, no option. Brains heal slowly, I send you my very best wishes to you and your family as you navigate your path. xxJean
  13. Hi Diane, So glad you found this forum. I have said this before but I just felt like I fell into their arms. So much support from people who understand what i am talking about. I had my event 2 years ago, first my SAH then Vasospasm, two different hospital stays 8 days in ICU with an additional 3 days then 2 weeks of rehab as my core strength was gone. I like you feel lucky to be alive...we are survivors but we still need to understand and digest what has happened to us. There is much written on this site from survivors that are way more eloquent than I (haha) but I did want to welcome you to BTG. I am from the USA also, couldn't find a support group that related to me as this one does. Jean
  14. Hi Mandie, Welcome to BTG. I am so sorry you are having a tough day. I don't know how to explain it to anyone....but I do think the people who love us try and I think their frustration perhaps is as difficult as our own. I am happy you found this site, plenty of us here that understand. I have found this site to be a comforting place to come for understanding and encouragement. I hear in your writing you are searching for the thing that will make life seem worthwhile again. The sky is the limit...You have great strength and ambition. I have found in the midst of feeling strong and ambitious I have times of feeling the loss of my old self. I don't know if it goes away but I know I am lucky and want to keep moving on enjoying this life. I hope tomorrow is a better brighter day for you Mandie. you are so right your sky your limit... Jean
  15. Thank you all and Sarah you are not alone in how you feel... I work hard to keep up beat , I do...but it catches me now and then and drags me down like a rock...Today I went to try and buy myself a couple of summer shirts...it was awful...dressing and undressing, no seat in the dressing room and after 4 articles of clothing I was feeling "very swishy" sweaty and defeated... I will persist....only life I have and I am going to do my best to march on... Jean
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