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Tinaw

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  1. Thank you for taking the time to reply. It's good advice to express my fears before the angiogram and not after. The silly thing is, I actually met my councelor just last week and when she asked me how I felt about the angiogram I just said that I felt ok about it, that I had done it before, so I knew what to expect, etc. Little did I know how I would feel just days later. With that said, things have settled down a bit now. I had about ten hours of sleep last night, which is highly unusual for me, and today I feel more positive again. Worry is exhausting.
  2. It has been almost three years now since my SAH, and I feel that I have come quite a long way in my recovery. Fatigue is still a problem, but it’s slowly getting better, or maybe I am just getting better at adjusting my pace. I have recently been able to exercise more without having to rest up too much afterwards, which has been very helpful. Yesterday I had my first angiogram in two years, and this has left me so upset and emotional afterwards and I just can’t get back to a positive state of mind. I have had a few angiograms before, so I knew beforehand that it would be a bit uncomfortable, but this time I just panicked. I was so deeply afraid that something would happen during the angio that my heart was racing even the night before. And when I got to the hospital in the morning, they told me I would have to wait because the doctors had to perform an emergency surgery first. So three more hours of worry. The fear I felt during the angio made me so tense that it felt like it took forever. And this was even though I had had a mild sedative before. Afterwards I was very lucky to have a nice surgeon, who told me straight away that from what he could see, everything looked fine. He even came to my ward to give me copies of the scans, and explained them to me. After that, I was so relieved and felt happy for a while. Today however, everything just hit me at once. The toll on my brain from the wait, the irrational fear and the anxiety before the angio. And also having to rest and not being able to exercise for a week or so because of the risk of bleeding. It reminds me so much of how I felt at the beginning of my recovery, and I feel confused, angry and a bit sad. And I can’t even explain why, I can honestly say that I haven’t felt this affected mentally for a long time now. I guess I just wanted to share this with you because even though I have been talking to my husband about this, he can’t really understand why I was afraid in the first place, I am usually a very rational person. So thanks for listening. /Tina
  3. Fantastic news, Kay! Congratulations.
  4. Hi, I specifically asked my consultant about this as I have found acupuncture really helpful in the past. She said it would be perfectly safe. Since then I forgot about it, so I never actually went to my physiotherapist to have it, though.
  5. I had two aneurysms, one was embolised using both coils and a stent, the second one was so small that it wasn't possible to use coils, so they only used a stent. I have been told that the doctors were worried about the procedure beforehand, and I was kept in an induced coma for a while as they decided what to do. But once the embolisation was done, I was told it was successful. A follow up angiogram a few months later confirmed that the stents were doing their job, and no further procedures would be necessary. I will get another angiogram but only in a couple of years' time. So from my experience, a stent can be sufficient treatment. I have no idea how common this is, though.
  6. Thank you, some great advice and encouragement again! I know that my girls will be more keen to help out if there is some sort of reward at the end, so I will absolutely try that. A colleague of mine suggested this mobile phone app for children where you can list things they can help out with, and you also have the option to add small rewards, for example a pound for hoovering. So when they do something on the list, they can just open the app, tick that off the list, and they instantly see how much they have earned. I don't know if I will try it, but I think my girls would find it appealing to help out AND being allowed to use the mobile phone :). About hanging laundry mindfully, I remember in the early days after my discharge from hospital that I was very keen to help with the laundry (for whatever reason), and decided to try to match socks in pairs. And how I struggled. Easy enough with the unicorn ones that my youngest wears, but otherwise it was just a huge heap of black socks and I just couldn't see the difference between them. My mind literally went blank. It took a good while before I was able to do that. But it's true, once I could do this and other tasks myself, I did stop asking for help. I will keep that in mind from now on.
  7. Thank you so much for your support. Your comments have made me see a few things more clearly. Most importantly, I do not want to end up back in hospital, and from what my body is telling me right now, that is where I might end up. I have kept pushing it for a while now, and have been wanting to cope so badly. So, I realize now that a lot of the pressure comes from myself and as you said Daffodil, my wanting to be able to do it all, like I was used to before the bleed. I have been encouraging my girls to do more at home, and they have been, actually, but I also realize that constantly having to make them do these things is also draining me of energy. They don't automatically do what I would like them to do, so again, I have to be there to see that they do chores, homework, pack gym bags etc. I am definitely the project manager at home, and I would be happy to be able to share that role. I did talk to my husband, and he is very supportive, but there is no changing his work situation, so even though he helps all that he can, most of the household responsibilities fall on the person that is at home the most - which of course is me. I do see that something has to change. I will have to think about my work hours, and also try to list all the things I do during a day just to see what I can possibly "outsource". Maybe getting a cleaner for a while might be an option, I haven't considered it before. And Skippy, I loved the idea of calling housework housefun instead, it made me laugh :).
  8. At the moment I find myself really struggling again. I am 11 months out now from my bleed, and only returned to work three months ago. I work 10 hours a week at the moment, with Wednesdays off. At first this went very well. I felt like I had a life again, seeing my coworkers and also getting out of the house for more than just a walk. I am very fortunate, because I have no pressure whatsoever from work that I should do more than I am managing at the moment. Also, I have the support of a health care team (a doctor, an occupational therapist and a counsellor) with which I have regular meetings to discuss how I am coping. I don’t feel pressured from them either to do more than I am currently doing. The thing is, though I work so few hours, and enjoy it, I am feeling increasingly fatigued, with more headaches and other neurological symptoms from time to time. I try to rest when I am at home, but I have two young girls, aged 8 and 10, who really know how to keep me busy. My husband has a long commute to work and comes home late which means I take most of the responsibility when it comes to the children and the housework. My head just doesn’t seem to be up for this, and it gets me down. I currently feel rather useless, needing to rest all the time to manage. The question is, I guess, does anyone have any advice on how to find that work/life balance after a bleed? I am worried that I am going backwards in my recovery at the moment, which is depressing after a few months of progress. I will go and speak to my health care team again soon, just wanted to hear if and how you have managed.
  9. Hi Stephen, I'm sorry that you are not feeling well. When I was discharged from hospital the doctor told me to look out for two things, one was increased pressure in my head and the second was actually feeling the need to pee a lot. He told me that this could be the body trying to get rid of excess fluids in the head. So I would absolutely go see a doctor. I hope you feel better soon!
  10. I understand what you mean, Kay, for me it took a good while before it dawned on me what had actually happened. My husband tells me I was quite cheerful right after getting out of hospital, which certainly wasn’t the case a few months afterwards. It has been a rollercoaster of emotions since. I still haven't had my first anni-versary. But in these 8 months since the event I have learnt that it’s ok to feel emotional and sad about what happened. The important thing, I think, is that it doesn’t feel like that every day. If that is the case, I would definitely see a councellor as Daffodil suggested. I book an appointment whenever I feel that I’ve been down for a while, and that helps me stop my mind from going in a downward spiral of negative thoughts. Also, I try to do things that I used to do before the event, even though I do them more slowly than before. Things that make me feel a bit better and a bit more confident each time I manage to do them, like taking yoga & meditation classes, travelling or even just getting out of the house for a while, having coffee with a friend etc. Happy anni-versary to you, and I hope you feel better soon!
  11. Thanks! I was also expecting the lights show, as I experienced that during my last angiogram, but this time I didn't react much when the dye went in. I thought it might be because the brain has had some time to heal, but I have no idea. Again, good luck with your scan tonight!
  12. Thank you everyone, everything went pretty smoothly even though angiograms aren't my favourite. Now it is definitely time for a nice cuppa, and probably some chocolates to go with that :). A couple of weeks of waiting for results, though, but the doctor told me that everything seemed to look fine at a first glance. Hope your scan went well too, Kay!
  13. Good luck for tomorrow, Kay! I am going for my follow up angiogram (also tomorrow) so I feel the same way, hoping that everything is fine. Fingers crossed!
  14. Hi! I have had stents put in, as well as coils, this was 7 months ago. I believe that while the coils are metal spirals fitted inside the aneurysm, a stent is an expandable net which is fitted into the artery, to make the wall of the artery stronger, and also to make the blood flow easily through the artery. I had both coils and stents placed by angiogram at the time of my bleed. Because I had the stents put in I have to take blood thinners for a year afterwards, to prevent blood clots from forming. I was told that after a year the stents will have grown into the wall of the artery completely, and no more blood thinners will then be necessary. I don't know if having a stent placed after the initial bleed will affect recovery, but I imagine that the procedure will be easier for your dad as there is no bleeding at the time of the fitting of the stent.
  15. Oh, the delusions! Thank you for bringing this up. I had so many in the early days in hospital, and it took me a while afterwards to sort out what was true and what was not. After the SAH they kept me in an induced coma for a few days, trying to decide what to do, as my aneurysms were apparently very risky to coil. During this time, and a few days after waking up, I was often in another world. I genuinely believed that my husband, while I was in hospital, had redecorated our entire house to look exactly like the hospital ward I was in, with screens everywhere, hospital beds etc. I also remember him saying that he did this to be able to take care of me better when I got home... I remember being angry with him for doing this, as I believed he had spent a lot of money making these changes to our house which I felt were completely unnecessary. Also, before I had my SAH we bought a cat, and he was frequently in my delusions. When I closed my eyes I saw him, and a few identical cats walking past - and this was really every time I closed my eyes. I believed that my family had bought four more (identical) cats while I was in hospital, without telling me. I was upset about this, too. I remember the relief I felt when the cats eventually disappeared. (Except for the real cat, he's still with us, helping with my rehab by being lovely). Then there were many delusions about what happened in the hospital, and these I still don't know if they are in some part real or not. It was like being in an episode of "Grey's Anatomy", with the brain surgeons being envious of each other and stealing procedures from one another and such things. (I do hope that was not true, but didn't dare to ask the hospital staff :)). I could go on and on...it took a while before I dared to ask my husband if he actually had made the changes to our house, and if he had bought four more cats.
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