Welcome, Guest!

By registering with us, you'll be able to discuss, share and private message with other members of our community.

Kay

Members
  • Content count

    51
  • Joined

  • Last visited

Community Reputation

85 Excellent

About Kay

  • Rank
    Member
  • Birthday 03/11/87

Profile Information

  • Gender
    Female
  • Location
    Essex, UK
  • Interests
    I love reading, I'm currently trying to make my way through all the classics, I'm also a massive fan of anything that's slightly surreal, think Douglas Adams, Jasper Fforde, Robert Rankin and Terry Pratchett.

    I'm also slightly obsessed with 18th Century French art just lately (don't ask).

Recent Profile Visitors

297 profile views
  1. I can't do without books, it was really hard for me not being able to read at first. I'm pretty much obsessed with Goodreads and it was my second year doing the reading challenge and just like the year before I had already pledged to read 50 books, and of course after the SAH I thought there is no way I am going to be able to achieve that this year. But as Daffodil has suggested I resorted to a lot of audiobooks at first (I've always liked audiobooks to be honest) I took care to read shorter novels and I even read some graphic novels too. I ended up surpassing my goal and reading 60 books last year, I was very proud of myself. Fingers crossed I can do the same this year, already pledged my 50, and already 2 books behind schedule (I haven't read anything yet this year) time to find a new audio book to read me thinks. I have actually ordered this book 'My Stroke of Insight' from the library now, just waiting for it to arrive.
  2. Recovery times are so individual, after my SAH at 3 months I was still taking naps halfway through the day, but at 6 months I felt pretty close to being fully recovered, to the point where I was considering going back to work, it was only after an appointment with my neurosurgeon when he told me I'd need follow up surgery and then waiting for said surgery that stopped me. I've now had the follow up surgery which didn't go as smoothly as hoped (I had another bleed somewhere else in my brain, so this time a NASAH) I'm now one week out of hospital, I'm definitely improving every day , no napping required this time, but physically I'm weaker than I was last time, it's swings and roundabouts I suppose. Fingers crossed this time round it won't take me as long I'm aiming for the 2 month mark
  3. After my original SAH I was still having a nap half way through the day after 4 months. If I went out for a day I definitely couldn't be doing anything for the next two days at least because I would be totally wiped out, so what your husband is going through sounds totally normal to me, but it's always best to be on the safe side and go back to his neuro team and talk it over with them if your concerned. Right now after this latest NASAH I don't yet know my limits to be honest, I've just recently conquered the stairs again, but I'm not having to nap in the middle of the day this time round, maybe 5 mins on the settee if I've done something particularly strenuous (and I would class putting up a picture as particularly strenuous)
  4. Kay - new member

    Yey, I'm now able to get up and down the stairs unaided. I had resorted to using the stair lift (Me and Joe live with his great aunt who is 87 and I'm basically her carer, she has dementia and a colostomy bag, not been particularly easy to deal with, with everything that's gone on, but I thought I should explain why there was a stair lift in the house). Anyway exceptionally proud of myself, I have defeated the stairs, took me a week but I've done it.
  5. That sounds great and right up my street. I'll certainly be having a go at it, can't wait
  6. I think shes amazing, how she can describe everything so clearly. She also made me understand possibly why my anxiety disappeared for about a month, during my original SAH, I thought it was weird at the time, I kept thinking this is probably one of the scariest things that's ever happened to me, why am I so calm and fine about all this, it was just so bizarre. I can't wait to read her book, my library has it thankfully, hopefully I'll get round to reading it in the next few weeks (I haven't yet attempted reading a book yet, I thought I'd give my brain a bit of a rest first)
  7. This is the TED talks that Jill did about her experiences as well, I always love a good TED talks to be honest
  8. So after explaining what had happened to me to my reading group on Goodreads, one of the other members who is a nurse recommended this book to me "My Stroke of Insight: A Brain Scientist's Personal Journey" by Jill Bolte Taylor. I haven't read it yet, I was wondering if anyone else on here had read it? This is the description for it: Jill Taylor was a 37-year-old Harvard-trained brain scientist when a blood vessel exploded in her brain. Through the eyes of a curious scientist, she watched her mind deteriorate whereby she could not walk, talk, read, write, or recall any of her life. Because of her understanding of the brain, her respect for the cells in her body, and an amazing mother, Jill completely recovered. In My Stroke of Insight, she shares her recommendations for recovery and the insight she gained into the unique functions of the two halves of her brain. When she lost the skills of her left brain, her consciousness shifted away from normal reality where she felt "at one with the universe." Taylor helps others not only rebuild their brains from trauma, but helps those of us with normal brains better understand how we can consciously influence the neural circuitry underlying what we think, how we feel and how we react to life's circumstances.
  9. Kay - new member

    Thankfully I found my notes so this is my original SAH part 2 The CT scan I had at Basildon apparently showed that I had blood on the brain. I wake up the next day in Queens Hospital, I’m not at all surprised by this, and my immediate recollection is of cutting my finger open on the tin the night before. My memory of the following week is very fragmented. At first it was assumed that I’d passed out from cutting my finger and that I’d then hit my head and that was what had caused the bleed. That my brain would then just absorb the blood and I’d be able to go home in a few days. I didn’t eat much in the first week, everything tasted foul to me, especially this jacket potato I had (having read up on it I realise now that the bleed had temporarily affected my taste buds) I had an angiogram on the Wednesday to check that everything was going ok. On the Friday a doctor came in to tell me that they’d been looking at the angiogram and original CT scan and that they believe I had an aneurysm that had ruptured and that they’d like to take me in to surgery as soon as possible. I remember feeling quite numb and calm about it all. I asked him if I could just ring my fiancé because I’m only half taking in everything he’s saying to me. He was lovely, he gave me his mobile to ring Joe and then he explained to Joe everything that was going on. I remember before going in to surgery that someone came and marked a cross on the side of my neck near my jaw line so I was very surprised to wake up with a line of staples down my centre parting. They originally wanted to coil the aneurysm and that was what I was told they were going to do. I went into surgery on the Friday. They couldn't coil it though, at the time we were just told that the coiling failed. I only vaguely remember coming round and being informed that the coiling hadn’t worked; I think it was something to do with the location of the rupture (it was very difficult to get to). So I had to go back into surgery on the Saturday to have the aneurysm clipped, which was successful. (I only vaguely remember later being told that the aneurysm could only be partially clipped because of these blood vessels coming out of it). I don't know if it was the double dose of anaesthetic in such a short space of time, but I don't remember the time in between the surgeries. I was very groggy for the next week. Apparently I repeatedly asked things over and over again (I don’t recall this at all). When I woke up I kept asking over and over again about the staples in my head, I do remember being very curious about them, I just wasn't expecting them to be there and so was utterly confused and fascinated by them. I found it very hard sleeping in the hospital, even as a child I’ve needed complete darkness and silence to sleep (I can’t even have a ticking clock in my bedroom) so sleeping in the hospital was a nightmare for me I had ear plugs and a sleeping mask. The sound of the drip was driving me insane, so one of the nurses figured out for me that if I drank 5 jugs of water a day then I wouldn’t have to have the IV. I also recall that my sense of time completely went out the window; 10 minutes felt like an hour, it was so bizarre trying to keep track of time. I had to wear sunglasses most of the time because the light hurt my eyes, I could barely open them The side effect of the Nimodipine was that I felt warm all the time (this just happened to coincide with a very warm March) so I was constantly asking for the window to be opened, one night the wind was blowing so strong that it brought the blinds down, and so of course everyone was joking with me for ages that it was my fault. Now I have suffered from anxiety for a long time, I've even been on medication for it, but I was the calmest I have ever been, which I thought at the time was strange because this is probably one of the most stressful things that's ever happened to me. But I was completely calm even serene. After watching Jill Bolte Taylor’s TED talk I now understand possibly why this was the case. I was discharged on the 24th of March, which means I was in hospital for just under three weeks.
  10. Kay - new member

    After reading through all the comments on here last night, it occurred to me that I never completed my original story of my first SAH, I only got so far and needed to stop. I'm going to make an effort to complete that today. I just hope I haven't forgotten most of it at this point now, I think I wrote some notes down at the time, I'll have to see if I can dig them out.
  11. I've noticed every now and then people mention some delusions within other topics, but I couldn't find a topic dedicated to it. Hopefully these people will repost these incidents here so people can find this information more easily, as I mentioned Joe found it difficult finding anything out about delusions from the site. I too had no delusions with my original SAH. It was only with my second NASAH that I had all my delusions, which I'm still really surprised by, I'd have thought it would be the other way round. I don't know if maybe because I'd already had a SAH if I was put on stronger medication and that is the reason why for the delusions.
  12. I'm so glad you decided to share this. The whole reason I started this topic was my partner came on here trying to find out about the delusions, because he was getting very worried about the ones I was having (even though at the time I didn't tell him half of what was going on in my head) hopefully this will help other people to share their experiences as well. Thank you
  13. Greetings

    I had a cyst as well, mine was in my brain, and became active because of all the bleeding and messing about in there. So they decided to remove it, as it was on the same path as my aneurysm anyway. Well I'm glad your resting more. It's best to try and avoid getting fatigued, when I first had my SAH I was having regular naps throughout the day to avoid overdoing it, it really does help.
  14. O my god, that was so lovely to read. I absolutely adore cats so you had me hooked from the start lol. Love and laughter are definitely great healers. I found that out this time around more than anything else. My mum and my fiancé came to the hospital every day determined to put a smile on my face, and more often than not they succeeded, I put down my speedy recovery to them (I was expected to be in hospital for at least another couple of months). There's nothing quite like local parks and feeding ducks, fingers crossed it won't be too long before I'm able to do that again.
  15. Greetings

    And by the way ,welcome to the site(so sorry, I maybe should have started with that, I was just so concerned for your health). It's excellent that you managed to find this great support forum, there is a wealth of information and experience on here. I don't know where I'd be without it