DawnS

Well, I phoned OH this morning and guess what they said? They cannot discuss my case with me!!!

Hiya Marie, i can relate to no-one believing you that it was something serious. I too knew i was having a brain haemorrhage because my mum had died of sah 9 years earlier. The local hospital would not take us seriously and they assumed I was having a panic attack. To shut me up (I believe I was wailing a bit) they gave me morphine so when the consultant finally got round to me, I had no reflexes. He was sure this meant I was simply having a seizure. Although my partner insisted I was haemorrhaging, they knew best. I'd been bleeding for over 4 hours when they finally did a CT 'just to check'. Have you a MIND in your local area? You can self-refer for counselling. There might be a short wait, I used them years and years ago after mum died and it was very helpful. You get 6 sessions. I'm trying to remember how long I waited to be offered help, I can't really remember that far back but I'm sure it was weeks rather than months. Does your surgery have an 'anxiety management' nurse? My surgery has and she was brilliant when I had depression after mum died. She spent quite some time listening to me to get me the right AD's for me and my situation. You will get through this. My GP told me that recovery is most rapid in the first 6 months to a year, then it slows down but recovery is a continual process and there can still be good changes for a long time to come. I was 35 when I had my sah and I was told that my age would work for me. To begin with, I was in a wheelchair, then I used a zimmer. Now I can walk for miles unaided. I couldn't read or write, but slow and gradual practise has brought all this back. I am a thousand miles further on than I was even 4 months ago and in 4 months time..who knows? It does get better, honestly. Dawn x

When i first got home from hospital, nothing tasted like I remembered it tasting. It was so disappointing to have a craving for something only to find it didn't taste like it should. I am not sure how much of this was due to the sah and how much was due to the fact that when the staff realised I have an issue digesting dairy, I was fed on boiled-egg salads for the next 17 days! As well as this, I had taste distortions too. I would be munching away and suddenly the food would tast like I was eating pure salt, or fish. It didn't matter if I was eating sweet or savoury, it would suddenly change and taste like smoked mackerel! It put me off food for quite a while (except ice cream!). The taste distortions only lasted a few months, but it's only recently (8 months in) that everything has started to taste like it used to. I still can't stand flavoured crisps, I now love spicy food which I never have and I don't drink anything stronger than 7% alcohol.

Thanks for all the replies everyone, you have been a great help as usual! I haven't been able to phone them today because I had a visitor who stayed for 6.5 hours (), which was well after the offices had closed. I will call OH tomorrow, as a few of you have said, there is no point in worrying if a call can answer the question. I did see the questions that work had posed, they were along the lines of 'when can dawn return to work?, can dawn return to her previous role?, can dawn return to full-time work?' Standard questions I assume. It had never occurred to me until today that returning to work might not be my decision to make. I had assumed that as my GP had signed me off until August, my sick-note would run out and I would begin a (hopefully slow) phased return. I'm rather surprised to find that this might be out of my hands. Must go, I'm absolutely shattered after my visitor! Thanks again All, Dawn x

Afternoon All, This afternoon, I have received the report from the OH meeting I had last week. There is a small paragraph in there that is worrying me slightly and I wondered if any of you know what it means please? 'As I am indicating that I cannot see Dawn returning to work in the forseeable future, you may be left with no other option than to consider further management action.' Any ideas what 'further management action' means? Cheers, Dawn x

I can sympathise with both the anger and the tears. I actually irritate myself, so I dread to think how my poor other half feels. When ever I want to do something and find that my brain just won't come up with the goods, I sob and sob and it takes absolutely ages before I can calm it down. As for the temper, it's like extreme frustration and if I didn't vent, I'd go crazy. It's taken a while for Andy to stop taking it personally and when he still does, that makes me even more mad. I must be horrible to live with I drop everything these days and my chest has become some kind of table (I need a bib!). I regularly drop my fork off my plate, alway when it's fully loaded of course. Another thing I regularly do is miss my mouth when I'm drinking. I drink my water from pint glasses, because if I drink from bottles I get really bad trapped wind in my chest, and the water just pours out the sides and down my face or worse, I tip the glass up before it's anywhere near my mouth. These small things drive me crazy to the point of extreme potty-mouth! And as for people messing me about with plans??

Thanks for the replies all, I see I still have problems in getting accross what i actually mean to say...what I'm not sure about is making a complaint against social services. I mean, it would have been nice if they had shifted themselves a bit quicker, but they only get their funding from the govt. It's not like they have singled me out to not get a social worker yet...I imagine they have very limited resources and staff and I'm not sure that a complaint is the way forward. That said, a friend of mine told me that a complaint isn't about you, it's about the people who come after you to ensure they are treated better. That makes it sound a whole lot different to me but I am still undecided. The first question on the form is 'have you raised your complaint with a member of staff and if so, who was it?' Well, the answer to that is no because it was the student at headway who made all the phone calls, so if I haven't raised the issue directly, how can I make a complaint?

I've had no luck with Headway as yet because I am still waiting to get a social worker and when I get one I'll have to wait to see if they can allocate funding. One of the social work students at Headway has asked the North Younger Adult team for their complaints procedure. This arrived yesterday, as she asked them to send me a copy too. It's been 2 months since a social worker was requested and while I think this is a bit slow, I'm not sure that I want to make a complaint. The student who requested the complaints information has now moved onto another placement (she left on Friday). To be honest, it's all taken so long I am no longer sure I need Headway anymore as I have now gotten so used to getting on with things myself, but I feel like I ought to because of how much effort has been put into it by other people. I'd love to hear any opinions on this one if you wouldn't mind?

Hiya, a little update... I had my assessment yesterday and they did not take blood at all so I don't know why I was told that they would. The doctor checked that I have no weakness on my right side and did lots of memory tests, spelling words backwards etc. I had to write one sentence on a piece of blank paper and the only thing I stumbled on was a driving-related question, typical! He asked what comes after an amber light, I said green and he just looked at me, so I said it must be red then! He seemed to find it amusing but he made it very clear that he could not advise me in any way as to what the outcome would be, I've to wait for the dvla. I feel quite positive though and I think I'm ready to drive now whereas a few weeks back I would not have thought so.

Thank you very much for all the replies, and to Kel for finding that link. This will be the first thing I do on Monday morning! Dawn x

A little update... I finally got my results in the post this morning, all the letter said was that they need to do another MRA in August 2013 which will be the 2 year check. I am assuming that this means everything is ok. Still no mention of actually seeing anybody though. All I can say is thank goodness for the internet and BTG! Dawn x

hiya Nic, my sleep pattern was exactly like yours for months and months. I felt really desperate! I went to my GP who said that this was normal after sah and that I should not take anything to help, not even herbal stuff. He told me that my sleep pattern would reassert itself eventually but that the more interventions i tried the less chance i had of it returning. Well, I listened to that for 6 months and then we went out and got some herbal remedy. My GP was most put out. But i was getting more and more tired, I get 'stuck' and this was getting more regular, my speech was suffering too, I sounded like I had a stutter. I've actually been sleeping ok since i bought the herbal stuff, but the same day my GP gave me some 'one a day' antihistamines and these make me sleep too. So, like a very naughty patient, I mix my drugs and get about 9 hours a night now, bliss.... Hope you get some sleep soon, Dawn x

Hi Lisa, not sure that I will be of much use to you here as I have not suffered depression since the sah. I have suffered quite badly in the past so I understand how awful it feels. Go to your GP and be honest with how you feel. Perhaps you need to change your medication. A nurse once explained to me that anti-depressants are a little like the contraceptive pill as in what works for one person won't help another and you have to try a few until you find the perfect one. I hope you feel better soon, Dawn x

My memory is much, much improved now. My partner and I used to do memory exercises. Like as soon as I realised that I could remember getting out of bed, Andy would ask me, 'what have we done today?' and I would run through what hot drink we had and who made it, what we'd spoken about etc. Soon enough, I could remember the previous day, I was so excited the first time I remembered yesterday! Recently though, I'm finding a few holes appearing again. I will have no recollection of having discussed what we would eat for dinner, sometimes even within half an hour of talking about it. These new holes bother me a little, but I'm trying not to worry about it as this will just make it worse. I hate it when people try to provide a word for me because if the give the wrong one, it scrambles my thoughts all over again and I have to start from the beginning again. I get stuck on words beginning with certain letters, like 'o' 'w' and 'l', I'm becoming very adept at finding another word for the same thing but starting with a different letter

Thanks ladies, there are some really good ideas there. I've just gotten off the phone from Nana and this was the first time ever that the call has been only 10 minutes, maybe there's something in the idea of a 'universal consciousness' after all! She could hear that I'd just sat down to my dinner, not cos I was chomping in her ear (yuk!) but because she could hear the cutlery going. She still managed to slag of my cousin for being 'way too chunky and having thunder thighs' . Goodness, how Linda would feel if she knew. I actually went out and bought a new phone with an answering machine so that she could leave me a message, but she does that and waits 20 minutes and calls me back again I can hear myself moaning about Nana and I'm thinking that I sound just like her

Hiya All, I've been wanting to post about this for a few weeks, but didn't know how to put it accross without sounding like an ungrateful, heartless so-and-so, but I really need some advice now please! Before the sah, I spoke to my Nana once a week. It's been like that since I moved down here 18 years ago, we are not a close family. Even after my Mum died, we soon returned to the same routine. Since I left the hospital, I have spoken to my Nana every single day. That's 194 telephone calls, each run for about 30-45 minutes. To begin with, this was lovely and I think she needed lots of reassurance as it's only 9 years since Mum died of sah. Nana feels somewhat responsible for both me and Mum as sah seems to run in Nana's side of the family (her youngest brother died of it in the 50's). But, these daily calls have turned into a bit of an issue for me now. She phones at the same time every day (she gets free calls after a certain time which is an hour earlier than my free calls so she always gets there first) and tells me exactly what she told me yesterday and the day before. We ran out of things to talk about months and months ago. I keep telling myself that I must treasure these calls, she's 83 and who knows how many more calls there will be. All she wants to do is slag off other family members, she has a circuit that she follows religiously for each call, starting with my Mum's cousin, going through a choice few others and ending with my sister-in-law. It's all very negative and judgemental and derogatory and it wears me out. I find it depressing and frustrating. If I'm not home when she calls, she phones my friend who lives in the same street as me to check if my lights are on. My friend will call my mobile to see if I'm ok. I realise that this is actually a good thing, if there was something wrong, people would notice. I sound ungrateful, I knew I would! What can I do? I think she needs these calls and she is alone, my Grandad died 11 weeks before my mum who was an only child. My Nana has had a really hard time of it. Am I being really selfish? I am aren't I! I might add that Nana is not a frail old lady, she still dyes her hair jet black and wear a full face of make-up every day. She also walks up to random strangers and tells them that 'she owns 128 jumpers'. People look at her like she's nuts. She has always been like this for as long as I can remember, so it's not just old age. She also thinks it's ok to openly use the 'N' word for black people and declares every overweight person to be a 'heffer'. Maybe a lot of it is her generation, she grew up in the 30's and certain words were ok then that aren't now. What can I do? I can't ask her not to call so often, like I said I thinks she needs them. Does anyone have any ideas? Dawn x

Hi Karen, now I understand why you've been so worried! Hopefully the anti depressants will help you to stop worrying about another bleed too. Dawn x

Oh, me too! Although i can't pretend that I wasn't a pig beforehand, but when i got home from hospital, the only thing I wanted to eat was Cornetto Enigmas. I ate boxes and boxes of them! I also don't really remember my dreams anymore. I used to have such vivid dreams that I would act them out, they were more like hallucinations really.

Hello again Karen, I'm really sorry, although I've been reading your posts for a while now, I can't remember the specifics of your sah. I had a coiling to fix mine and only had one aneurysm. The consultant told my partner that there was now more chance of him having an haemorrhage than of me having another bleed. If your off to see your GP, hopefully s/he can reassure you of the same. Hope you get the help you want, Dawn xxx

Thanks everyone for all the replies here. I finally had a letter through stating that I am entitled to the lowest level of ESA which will be paid into my bank account. At least I don't have to get into town to sign anything to get the money - that's one really good thing! Jo b - ESA is employment and support allowance which we are supposed to be entitled to when the statutory sick has stopped. There are several levels as I understand it, the lowest level is given for 13 weeks and to progress up the levels, an assessment has to be carried out. No idea what that involves I'm afraid! Dawn xx

hiya Karen, I get like this too and i don't know about you, but one thing that is sure to make me go from frustrated to furious in 1 second flat is people walking on egg shells around me. Bad enough being treated like we're made of spun glass without those around us starting to act like we are about to split the atom! Back when I was me, if I felt this way I would go for a long run and be all serene when I got back. I'm told that this isn't a good idea any more, so the most I do is stick 'Just Dance' on the Wii and have a boogie to myself. This seems to work(ish) though it's not half so effective. Course, the other thing I used to do was a red-wine treatment. This is also off the table these days and it's so hard to find new ways of coping with the new restrictions we have. Are you getting enough time to yourself? If you feel like you are apologising all the time it's deeply frustrating and you can get stuck in a downward spiral. If you apologise for everything always you are technically selling yourself short. By the law of averages, it can't all be down to you all the time. I have noticed that a lot of people on BTG generally seem to have the positive attitude of 'well, I have survived something dreadful, ergo nothing will get to me anymore because nothing is that important'. I just can't feel this way. I mean, don't get me wrong, I don't wish I had not survived or anything like that, it's just that I liked the old me and this new one is tired and bored and boring. I said all this to a friend of mine a few weeks ago and she said something that has really stuck with me - she said 'that's ok, you are just not at that stage in your recovery yet'. This really made me feel like I was let off the hook! It's actually ok to feel narky and fed up and robbed and cheated if that's how you feel, because you feel this way today or this month, that doesn't mean you will always feel this way. I suppose it's like the whole recovery process really, I mean 7 months ago I was in a coma, then 6.5 months ago I was in a wheelchair, then used a zimmer frame, now i can walk anywhere I like unaided. Maybe all the mental stuff is the same. Try not to be too hard on yourself, you have been through a lot! Dawn xxx

Oh, what a brilliant thread this is! I have read through and everyone of you who has posted could have picked their words straight from my head. It is really encouraging to know that these feelings are normal and we all get them. It's also really good to hear from those of you who have been at this a lot longer and to know that there are still improvements to come! Lisa, the thing where your brain just will not shut off, that gets better too. It took me about 4 months (sorry to be a bit depressing there!) but it got there in the end. I used to think that my mind was trying to recover the lost three weeks. But then I decided that some things are better left forgotten and that seemed to help a lot. Another thing that helped me, someone suggested to me that there was nothing wrong with doing nothing at all for a while. I was so desperately trying to get my days to pass after my partner went back to work that I was getting in a right state. I was quite frantic. Then my counsellor said to me that perhaps i should try sitting still, no book or tv, just sitting and to try to increase the time I could do this for. It was so opposite to what I had been doing up until then that to literally do nothing felt seriously weird. it helped almost instantly though. My brain started to shut up when I was in bed and the mad frantic feeling of trying to get through each day subsided. I still use this technique on days where my brain refuses to do anything. I wanted to write more, but my brain just ran out! Dawn x

I used to be in love with red wine, but now if I'm being really adventurous and really treating myself, I'll have a bottle of Asti . Oh, how my life has changed lol

Hello Everyone! I accidentally stumbled on a new one today and thought I'd share. As I was getting ready to go out today, for some unknown reason, I grabbed a set of earplugs and stuffed them in my bag. Later in the afternoon, we were in Blockbuster choosing some movies for the weekend. They were playing music incredibly loud. I never noticed before sah just how many shops play music! i put the earplugs in and voila! suddenly the noise was as good as gone, or at least a manageable volume anyway. After Blockbuster, we went to the supermarket and I forgot to take the earplugs out. I did the whole food shopping with the plugs in and instead of the usual 'i've been steamrollered' sensation I have when I leave the supermarket, i was reasonably ok! This might be a new regular tactic for me. It just means that my other half has to tap me on the shoulder before he speaks Dawn x

Hi Teechur, I might not be much use here as I had a grade 4 sah, the consultant told my partner this was a 'significant' bleed. When I have done too much, i get a headache. If I ignore the headache and keep pushing, my head starts to ring. That's the only way I can describe it really. If I get to the ringing stage, I'm done for and not only do I have to stop for the day, but probably the next day or so. Dawn x