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Deb

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  1. Thank you all so much. I forgot how supportive this lovely group can be. I have such busy days with my daughter that I barely have time to think half the time. Now that we have the summer holidays, that means no tutors back and forth the house and hopefully less appointments, so I will make more effort to come on here. My moto since the day I left hospital has always been 'onwards and upwards' Take care all. Deb. xx
  2. Thank you for your reply. The highs? Well, I survived. I'm here to tell the tale so they say. I have accepted the 'new me' the old me has gone, replaced by one who cares less about what others think of me. Says things as they are, no beating about the bush these days haha. That is partly down to there being less of a filter and partly 'there are more important things in life to worry about' attitude. I take pleasure in little things, like half an hour in blissful peace and quiet with a cup of tea. This is something I used to take for granted, but not anymore. Appreciating what I have. A beautiful family, my cats and dog, a roof over my head, a warm bed every night. They might sound trivial but I have something that many others don't and for that I am grateful.... The lows? Hmmm.... there are many The poor memory persists. I get frustrated, others get frustrated with me. We plod along though. Headaches.. urgghhh... though much better than the early days which is a big positive, they do still plague me and still worry me, especially if it's an odd pain, or in a different part of my head to normal. Fatigue gets me. Every. Single. Day. Some days it will creep up on me and others? BANG! I'm floored, can barely lift my head. I try to walk as much as possible but I find even a short walk exhausting. I have some weakness in my left side for which I am awaiting some physio. I have an appointment next week with an occupational therapist so things are progressing. I think if I was able to concentrate on me, my health and my own recovery I would maybe improve quicker, but sadly that's not possible at the moment. But all in all I'm feeling pretty positive. Take care all. Deb. xx
  3. Hi all. So I haven't been on here for quite some time. Life has been busy and stressful. This time last year I was being blue lighted to hospital having suffered a SAH. I feel very emotional today and didn't really expect that. It's been such a rollercoaster year I've barely had time to reflect on my own illness and health. I found myself with a few hours to myself today though (for the first time since leaving hospital. Seriously) and it has been very much at the forefront of my mind. I need an early night tonight as i'm pretty exhausted. Hope everyone is well. Deb. xx
  4. Hi all, it's been a while since I last posted. I'm a bit more of a worrier these days since my SAH, and I'm worrying a bit right now, (probably unnecessarily) I had a phone call from the hospital yesterday afternoon to say my consultant wants to see me on Wednesday morning. No other information. I had an MRI in January so thinking (hoping) it's just to discuss the results of that. My daughter planted a seed by saying if all was well wouldn't they just send a letter saying the results of scan were all clear, as is usually the case after any sort of test I've ever had..... My headaches continue though I'm happy to say the very bad ones appear less frequent. Suffering terrible dizziness, which the GP said may or not be SAH related. Hope everyone is doing well. Take care. Deb. x
  5. Hi everyone. Things have not been so good for me. I'm doing 'ok' generally the usual niggles, but struggling with my daughter. Not her as such, but the meetings and appointments that I have to attend. I think I cope pretty well with her day to day care and needs, with the help of my husband and older children. I'm finding I can't focus in the appointments, or remember everything that has been said. I take notes sometimes but it's just not the same, it kind of ruins the flow of the meeting. I'm finding myself getting angry, frustrated and snappy. I find it difficult to find the right words and in all honesty, I'm scared they'll think i'm not coping, when I am at home. So we are taking a 'therapeutic break' for a few weeks. This is a good thing, I'm almost at breaking point and I'll be good to no-one if things continue as they are. On to a more positive note. Yesterday I received a letter from the hospital I was treated at, inviting me to a new service 'follow up appointment' It has never been done here before (not sure about anywhere else) Basically I get to speak with the neuro specialist nurse and consultant and if they deem it necessary they can refer me to a psychologist and someone else I can't remember who sorry. They ask about the care received in hospital and will answer any questions I may have, that'll be lots then, haha, So, I'm actually looking forward to that, it's on the 10th of Feb, so will let you know how it goes. Have a nice weekend. Deb. x
  6. Hi Jan, I feel my eyesight has also deteriorated. I was told to wait 3-6 months after SAH before having eyes tested and new glasses just in case it corrects itself. I had an appointment with an Ophthalmologist last week, all was fine. He's going to do a field of vision test in a couple of months. I need to make an appointment at the opticians though to check if I need new glasses, definitely feel like I do. If you feel your eyesight has got worse make an appointment and get it checked out, best be on the safe side Take care Jan. Deb. x
  7. So I've reached the 6 month mark since my SAH. It's good to be here Not all plain sailing obviously. Same for everyone I know, but I'm grateful to be alive. Last few weeks have been particularly stressful, which has not helped my headaches or fatigue. But I do try to just get on with it. 3 hours sleep last night so feeling decidedly rubbish today, I think an afternoon nap is called for. Haha. Take care guys. Have a good day. Deb. x
  8. Thanks for reply Daff. Well I was in hospital for 3 weeks, coils fitted, numerous CT scans and LP's but that's the extent of my knowledge really. All I know is the bleed was the ride side of my head behind my ear. I'll go to GP and see if I can get any more info I might need. I don't think I have the patience to fill out forms online these days, so will ring around. Thank you
  9. Hi all. Just wondering where people get their travel insurance from? We've booked to go to Florida in September and obviously want to make sure I'm properly covered. Problem is, I don't really have any information on my SAH, where it was, how big it was, whether there are any more aneurisms. I know absolutely nothing. Will my GP have this information? And will he give it to me if I ask? I don't know if I would even need any of this, but I want to be able to give them all the details they need. I have had a few quotes and between my daughter and myself the insurance is really expensive, so wondering if anyone on here can recommend a company that may be relatively reasonable.... Thanks all. Deb. x
  10. Amy I have been going to write a post on back pain, so apologies for jumping on your thread. While in hospital I had numerous lumbar punctures which led to terrible back pain, I couldn't lean or bend forward as the pain was excruciating, when I mentioned it to the nurses they just said my pain meds will help with that,.... I am now almost 6months post SAH and my back pain is so bad at the moment. As you say Amy, it is pretty much on par with my headaches. Nothing I do or take seems to ease it. I suffered with sciatica for many years before my SAH and got quite used to the pain in lower back and leg, this seems much worse. I have the usual pain but also the sharpest stabbing pain in the bottom of my back. I don't know if this is the result of the lumbar punctures or just the sciatica has got worse. I have literally given up on my GP. The ones I have seen have no knowledge of SAH's and no sympathy with back pain. I guess i'll suffer in silence.
  11. Thank you all for your replies. It really helps to have some feedback from others who understand instead of just a bit of head nodding. There is a neuro nurse I can speak to, but I have to email her and wait for her to get back to me, which can take days or even weeks at one point, so it seems a bit pointless when I need to just know there and then. Will consider headway next time though. I tried to sleep, but between the phones ringing for appointments for my daughter and the door knocking to deliver parcels, I gave up. I took some painkilers, made myself a cuppa and sat in the quiet with my christmas lights on while my daughter slept instead. It's helped a little Claire and Win to answer your questions regarding stress and my daughter, they are one and the same really. She is still really struggling at the moment, which I find really stressful. We're looking forward to a couple of weeks off over christmas, both from her tutoring and her endless appointments with various people, so really hoping for some down time for us all. Sorry to hear you are also struggling Jan. Hope things improve for you soon. I think you're right about the weather though, it definitely doesn't help. I love cold, crisp, frosty mornings with sunny afternoons, but the grey, cloudy days are quite depressing. Hoping we'll get a bit of snow at some point this winter, I love it. But there'll be no sliding down mountains on black sacks for me this time, i'll just watch instead Thank you once again for your invaluable support. Take care. Deb. xx
  12. Hello everyone, hope everyone is doing 'ok' at the very least. Today is a bad day for me, headache wise. I think I am starting to get used to the daily headaches, and complain about them less (much to everyones delight I'm sure) However some days they are quite crippling! Today is one of those days. The pain is all down the right side of my head and behind my ear. Hasn't reached my neck yet, i'm sure it will. These are the headaches that worry me, stress me out and knock me for 6! I question them, is it normal? Should I tell someone? If I should tell someone then who? There isn't really anyone I can just pick up the phone to......... I think one of the worse things about all this is the misunderstanding. It's invisible isn't it... No-one can see the pain in our head, hear the noise in our ears or feel the frustration and anxiety we feel. My family are more 'on board' at the moment, but only after a major hissy fit on my part last weekend. I went into meltdown mode good and proper. Since then, they're trying just a little bit harder. Now to get people outside of my home to 'get it' a bit more. I hate going out for fear of seeing people I know. I can't cope with the questions and the statements saying "Wow, you look great, you've recovered so well" Blah, blah, blah....... They mean well of course, but I want to be able to look into their eyes and get them to see inside my head, but I can't so it's a case of suck it up buttercup. Deal with it, haha. My head is pounding, the screen is hurting my eyes, so as soon as my daughters tutor has left the building, this old girl is off for a sleep...... Take care everyone. Much love. Deb. xx
  13. I'm also happy to have found this post. I have had terrible noises in my head since I had my SAH, pretty much from when I can remember anything about it. When I was still in hospital I asked the nurse if she could turn the radio off as the songs on there were on a loop and really annoying me. They all looked at me as if I was crazy, One male nurse actually said "Are you mad" There was no music. Now I have a variety of noises ranging from whooshing, squeaking to actual words being constantly repeated. No-one seems concerned that it's hppening but it drives me insane at times. I also don't understand how it can be so loud yet no-one else can hear it! Deb. x
  14. Hi guys. Both times I've visited my GP there have been locums there, I've now discovered my actual GP has retired. I didn't see much of him as I rarely go to the doctors, I was always well and healthy and also was very guilty of 'just getting on with it' So there isn't a doctor there who knows me anymore. I did ask for a referral for counselling yesterday. Quite a waiting list though apparently. I will mention the fact I have had a brain haemorrhage when I make an appointment in future though, thanks for the advice. I'm off for a 40 winks now while my daughter is dozing herself. Don't know who's worse, me or her Take care guys. x
  15. Hi all. Thank you for your replies. It's good to know people not only take the time to read what's written but also take the time to reply. Yesterday was a bad day, I seem to be getting quite a lot of those lately. New day today so hoping it will be a better on, though waking with a sore throat and horrible tickly cough isn't the best start haha.... Touching on what some things in the replies. Not liking me... I didn't expect to come out of this unscathed, but I didn't expect to have changed so much, what I find odd is that no-one else sees it, to them i'm just like I was before so maybe it's all in my head. I find I care very little about well, anything really. Or very little at least. I go through the motions a lot. I'll see a news article and instead of it stirring some sort of emotion, whether good or bad I just roll my eyes, everything seems trivial. And I don't mean compared to me or what I've been through, just trivial in general. If it doesn't have an effect on my life then I don't want to know. Is this normal? Will it pass? Or is this just me now? Either way I don't like it. I find it hard to talk about how i'm feeling, especially to my husband. He's trying so hard to keep the mood in the home a happy mood, which is no mean feat trust me. But when I talk to him about anything he doesn't listen to 'hear' me he listens to reply... Does that make sense? He'll reply, then instantly move onto something else, whether a new conversation or watching TV, I can't do this, when I talk about something important, I need time to process it all, always been a bit like that but even more so these days. I've got to the point where I feel so annoyed at him for 'moving on' so quickly that I just don't bother mentioning things half the time. I'm still struggling to get some 'me' time. Though I have started going out most Saturday mornings with my older daughter, it wears me out but it's nice to have a little break, my weekdays are so busy caring for my daughter and attending various appointments and meetings! Macca, in regards to driving, I contacted the DVLA and my insurance company when I first left hospital, I was asked not to drive until they had received my medical notes and made a decision, that was fine by me, didn't feel like driving anyway... They were satisfied I was fit to drive. I'm only really driving locally, can't bear night time driving., which is a bit of pain seeing as it's dark by 4.30 most days hahaha... I really don't like driving but I have to as my daughter has so many appointments and i'm the only driver. Anyway, I'd best get on with my day, my new motto is 'onwards and upwards' Deb xx