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victoria conway

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victoria conway last won the day on December 5 2014

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About victoria conway

  • Rank
    New Member
  • Birthday 02/06/1952

Converted

  • Location
    Totnes, Devon
  • Interests
    Sailing, horses
  • Occupation
    Charity Manager
  • SAH/Stroke Date
    19/07/2011

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  1. victoria conway

    Body Chills

    Golly - been a long time since I came here! But, oh, how I resonate with your post. I have occasional days when I yo-yo between body chill and the complete opposite, almost like a fever. I'm 7 years after the event now and this has only started this year. But,interestingly, it's akin to other problems I have - like yo-yoing blood pressure, yo-yoing levels of acidity in my stomach, yo-yoing levels of mood ................... My husband wants me to get the doctor to sort it out - but all they do is give me drugs for the level I'm at at the time I see them - and then others to stop the effect when everything swings the other way. It's just all too confusing - so I have stopped taking most of their drugs and accepted that I have a damaged brain and take each day as it comes, listening to the only advice I was ever given - listen to your body. I'm lucky, in a way - I am now 66 and retired with no-one dependent on me - so every day is my own now and if, as today, the message was rest - well, that's just what I did. Hopefully tomorrow, I can do something.................
  2. victoria conway

    Tinnitus

    Ah - tinnitus - I still suffer from the constant whining some 6 years on. Occasionally it recedes a bit for a few moments - but never quite goes. I am driven to distraction during the summer months when the world and his wife are out using their power tools morning, noon and night because that makes it so much worse. (They're even at it still in November and this is meant to be the peace of the Devon countryside!) Just at the moment, I am making arrangements to move to France where at least they have some regulations about the times they can make such noise. How do I counteract it? Well - during the day, I sometimes confine myself to the house and close all the doors and windows. I open the doors when they have stopped making the noise. At night, to get to sleep, I employ 3-surround sound at low level - that's a radio set low on sound and a personal radio likewise low, straight into my ears - the BBC World Service is wonderful for me but I imagine anyone could do the same with soothing music! But words work best for me. Hope this helps!
  3. Waaaah, Lyn - don't wish it on yourself! Like SAH, everyone's experience is different with the menopause. Thankfully, I was through mine pre-SAH, but it was pretty rough for me both pre-menopause (miserable, uncontrollable flooding periods - including one on a cross-channel ferry when I had to beg them to let me go down to the car deck for fresh clothes, mid-Channel - that was truly embarrassing!) and through the process of it. I found it left me feeling so worthless - as if I'd lost my purpose of womanhood - along with all the symptoms. Despite urging from my husband, I resisted HRT - mostly because I naturally try to resist prescription drugs of any sort - but also because there were numerous scare stories around the use of HRT at the time. I sought out some herbal remedies - which were mostly pretty disgusting and didn't seem to help anyway - so in the end, I gritted my teeth and bore it. Eventually, it passes. Saraheliza - re panic attacks. How I sympathise. I still get them. My balance is shot post SAH and I know I have to move slowly and carefully, especially when turning. My hydrotherpist has been a big help in teaching me to focus on things as I go and I try hard never to leave myself in a rush to do anything. But every now and again, the old brain kicks in and I say to myself "I'll just nip there and do/get that" - two steps later and I'm frozen in complete panic, not even breathing. The only thing to do, I find, is to stop and talk to myself (I don't care what people think of me) and say slow, Victoria, breathe, breathe. There's a good French word I use which is "doucement" which means "gently". Be gentle with yourself!
  4. I'm a lot further on now - nearly six years! But I do remember those odd sensations soon after. I likened it at the time to having worms crawling around in there - and I remember waking in horror as a result.. The immediate results of a brain changing event can be pretty horrible but, over time, they do recede. As for flashing images, I still avoid them along with TV images that "whoosh". In fact, I realise I watch little TV now because of that effect they are so fond of to zoom in/out when it suits them. It seems that my damaged brain simply cannot keep up with them. So I read a bit and sometimes that's only 10 lines or so before I give up and put the book down. At the moment, it's Vera Brittain's "Testament of Experience" - a sequel to her poignant "Testament of Youth" and I've been at it for a good month or so bit by bit. But for me, the effort of reading - even so slowly - is so much more worthwhile than what is presented as "entertainment" provided by television. But then maybe, I'm just avoiding the news too! An SAH is or was, at least for me, a life changing event. It has taken me some years to accept that - to realise that what happened changed things forever. The worms did disappear though!
  5. Jan I'm actually on this forum as part of my research for the church service I will lead on Sunday - the talk is around Thomas the apostle - he who doubted - and it occurred to me that doubt is something we, as SAH survivors, grapple with. Can I do this? Can I cope with this? What will happen if I find I can't? Etc, etc, etc.................... Anyway, I came across your reference to Helmsdale in your post and that made me think a bit. I spent my young life growing up in the splendour of the hills of Sutherland - not so very far from Helmsdale! I think my heart is still there and I return when I feel I need to - during the breakup of my first marriage, after I met my second husband and, lastly, following my SAH. Going back assuages my soul somehow and, at times, I hanker after a complete return for good. Life is simpler, slower, there. Folk seem to have time to care and I am sure this extends into healthcare too. What stops me? A husband who just will not consider it - too cold, he says and no opportunity for his sailing! But also, it is really remote. Beautiful, but really remote. Far, far from my children and grand-children and I so value their part of my life. I simply would not see them so much. If I were lone, I would go back at the drop of a hat and spend the rest of my years there - maybe that's what your singer did - but I am not alone - even though at times it feels so. For the moment, I have directed in my will that my ashes should be scattered on the hill I loved behind my childhood home in Rogart in Sutherland. That's enough for me - to be home at the end!
  6. victoria conway

    Tinnitus

    Late into this post, I know! I find so little time to even look here with everything else that goes on in life. Whatever, I have had the wretched ringing in my head ever since my SAH. I can cope with it a lot of the time - but not when extraneous noises exacerbate it from outside - power tools and, in particular petrol bush cutters, drive me mad. We live in a village in Devon, which should be pretty peaceful. Gardens are small so, honestly, people don't really need these. But oh, these men get out in their little back gardens (with their ear muffs) and cut down pretty well nothing with the wretched things. I can understand the need for cutting the longer things in the graveyard across the road but that's only once a month. There are days and days in the summer when I feel marooned in my own house because of the continuing noise around. But the worst thing is when it decides to move around in my head - I think they call it volatile tinnitus. It can happen anytime and I cannot identify any trigger - it just waves in ringing through my head and I can do nothing other than sit down and let it pass. It destroys my already dodgy balance. Overnight, I have dealt with it by plugging my ears into Radio 4 on a personal radio (the Shipping Forecast music is particularly helpful!) and, during the day, I use earplugs when it is all getting too much. But they feel awfully grubby to me, those earplugs - all nasty when you put them in and even worse on taking them out. I'm not using the wax ones - the sort of hard spongy ones - whichever, they are not nice to use. Crumbs - I'm not offering any solution - sorry
  7. Dear Jan I got my eyes tested, big time, before I re-applied for my driving licence, which they had taken away from me. Over my life, I have lived with aged relatives who should not have been driving, my own parents and my mother-in-law. I was immensely cautious as a result. I never thought it was wrong that I could not drive to begin with - my spaced out brain was not even capable of the standing up and turning round process! My husband encouraged me to re-apply for my licence, largely so I could drive him to the station to get to his work, but even though I had my licence again, I got my eyes tested for peripheral vision - and, I had an independent examiner watch me drive to see how capable I am. I have lived by his advice since - you're OK but don't push it. Don't drive for more than about 45 minutes. I know it's time for me to have my eyes tested again - after all they recommend every two years - and I know I am holding the newspaper a little further away nowadays. For me, that's a function of age and throughout my life, I have had periods of stabilisation in my eyesight - four years now since I needed any alteration in my prescription but I'm pretty sure I need an alteration now. But I do think that's just change and nothing to do with what happened in my brain as a result of SAH. But that's me and my accumulated wisdom(!) - SAH robbed me of voluntary movement - moving without thinking about it - oh, Lord, if I could just do that, move, without thinking about it. Whatever it does to anyone is peculiar to that person. I'll make a deal with you, Jan - I need to get my eyes tested and so do you. It would be really good to do it together! Deal? Love Victoria
  8. victoria conway

    Learnt my limitations!

    Somehow, I managed to bring this here! The words are in old French but the music, by Faure, should be an acute over the last e - just wonderful. Crumbs, I only brought the first one! Now suddenly there are all theses others! Enjoy the peace of our Lord! love Victoria
  9. victoria conway

    Learnt my limitations!

    Sorry it's taken me a while to reply to all your kind posts! Alas, I had an episode of the tummy bug that's going round locally and that just floored me for a while. Also, I have been kept busy doing things for the church - since I retired, at long last, from running my charity at the end of last September, I have started a lay ministry course and am also the treasurer for our little church now. My brain still operates, intellectually! But I do need help with physical tasks now. For instance, this evening, I have managed to get a cassoulet (French bean stew) in the oven but the clearing away of vegetable bits and the washing up is beyond me at the minute. Hence my sitting here typing this (badly - the right hand is not behaving and I keep missing out the n's!) So, H will be faced with the clearing up when he comes back soon from his French class. I know this must be a downer for him but it's just the way things are. But a big thank you to all of you for your responses and best wishes. I haven't been here for a while but it does so help to know that I am not the only one who feels as I do. And I have tried to talk to him and explain (shoot - the l's are disappearing now!) but all I get is - well, they told me you'd be back to normal in 6 months. I've tried pointing him in the direction of Headway and they sent him leaflets, which he has neatly filed. I have tried writing to him to explain the way I am - again, they just get filed, with dates on, for some reason. I've tried counselling but he just does not engage with it. I am currently thinking about going to see the counsellor on my own to ask her advice. It is like I am living with someone with his head planted firmly in the sand. The trouble for me is that it is making me feel so guilty. That's a propensity I have, in any case. I think I have, after some difficulty, accepted my life now and, so long as I can plan things so that I know what I'm doing or where I'm going. Can have plenty of periods of rest and avoid using the stairs except to come down in the morning and go to bed at night, I'm OK. But I do need to have those plans and I think that one of the effects of this whole SAH thing has been to rob me of spontaneity. One of my chief loves was cooking - and I mean good cooking. So, if I can bore you with an example from a couple of Christmasses ago, I had planned the food for the day when all of his family were to visit. Planned it down to what came out of the fridge when and what was done when, to give me time and space to get it all done . I showed him the plan and said to him the night before - look, I've planned it all, please do not do anything until I ask you. Descend the stairs the next morning and he's got all sorts out of the fridge festooned all over the kitchen. The effect of this is to put me into panic mode - and then I've had it. Breathing goes to pot, blood pressure yo-yos - you know the scenario. So, it became a big thing - that he had to put things back in the fridge and adhere to my plan, and I felt resentful that he simply had not listened to me in the first place. Not ideal for the occasion. I like the idea of a doctor explaining things to him - but what hope, when you're rationed to a 10 minute slot, these days? My kind, listening doctor retired shortly before I did and I'm exploring the rest of them, so far without much success, but, on the advice of my hydrotherapist, I have booked an appointment with one who may prove helpful - but not until 31 January! Hey ho, I'll keep on trying!
  10. It's taken me some 5 years to come to terms with it. Lord, what a time. I am not as I was. I cannot do what I used to do, no matter how I will it. I have had few doctors who have cared - but one, now retired, younger than me! Who said, Listen, Victoria, you have had a bleeding stroke. I have learnt since to say those words with a certain emphasis (on the "bleeding") you understand. SAH, or, certainly the version I had, with hydrocephalus and post-operative complications is a form of stroke. Three times over, my brain got squeezed - by bleeding, by cerebral fluid, by sodium deficiency. No wonder my right hand side does not work. What I wonder is that even the people closest to me don't know. My so called husband, who only ever cares about his own interests - work and sailing. In his world, I was to snap back to normal. No SAH - back to his world, sailing, ski-ing, doing what he ever wanted. It does not work that way , does it? There was this SAH and it has changed my world. Rendered me incapable on my right hand side, the one I used to use. I can no longer do what he wants and maybe I should never have thought I could. I am in despair.
  11. victoria conway

    PIP application

    Louise Good to hear from you! I was told by the ATOS assessor who finally came and visited me, that she had been sent down here in Devon from Hertfordshire - because ATOS don't have enough assessors in this part of the world. Now, you are even further from wherever their organisation operates from - perhaps worth an email to your MP? They will make some calls and things might happen faster. They are our representatives, after all, and, effectively, we pay them! Use them! And yes, Win, we shouldn't have to battle and wait a whole year and more - I needed the help when I applied for it over a year ago - otherwise I wouldn't have applied, would I? I go through this regularly for some of my clients at work - I fight, I fight, I fight! Now, they say, I will get a back-dated payment to the time when the DWP acknowledged my claim - I can use that to top up finances for the hydrotherapy I have already paid for, but can anyone tell me how I can, retrospectively, get the house properly cleaned?!
  12. victoria conway

    PIP application

    I am posting this in an effort to sustain anyone else who has made an application for this benefit and may be enduring the frustration of delays and, dare I say it, ineptitude. As background, I suffered my SAH in July 2011 and came out from hospital with no idea of what to expect - like everyone who posts here, I think. I was lucky to have a truly benevolent employer - in effect, myself, as manager of a charity offering financial assistance to disabled people. The original founder of the charity helped me greatly and daily to get to and from work (at first I could only do an hour or so - and he is in his late seventies!). I thought I could hack it - just get back to normal work and everything would, in time, be back to life as it was. So, I never thought then to claim any benefit - although, obviously, I was totally aware of benefits available to disabled people. Two years plus after my SAH, I finally realised that things would never be as they were. Physically, I am not capable of cleaning the house - not the whole house. I can just about manage the kitchen in one whole day if I break down the task into three and rest plenty in between. As for getting a vacuum out - a) I can't physically get it out of the cupboard and the tinnitus which constantly fizzes about my head can't stand the noise. To the point, somewhere about October last year, I applied for a PIP ( a "Personal Independence Payment" - to cover the costs of getting help with cleaning the house and the costs of my hydrotherapy (which I have been paying for myself). It took the DWP six weeks to acknowledge my claim. So - late November. Three months later, in January 2014, ATOS sent me a letter saying they would arrange an assessment. That, eventually, happened on 7 October, some nine months later, and I was advised by the assessor to contact the DWP if I had not heard anything six weeks after the assessment. So, again, I sat on my hands and waited the six weeks. Then, and this is where the truly awful frustration started, I called the DWP and waited, endlessly, while a disembodied voice told me that "they are sorry claims are taking so long" and " they are working hard to correct this" and, finally, "we are all busy now - perhaps you would prefer to call back later". No! - and go through this whole process again? At long last, some human bean answered, checked that I do exist and told me that they could not do anything because they had not received the assessment from ATOS. I called ATOS - three times and each time, they could not even give me any information about my assessment. Finally, I sent an email to my MP last week begging for help. Suddenly, amazingly, the assessment was sent from ATOS to DWP on 1 December, the DWP made a decision on 2 December and I have been awarded some help. It is, quite simply, enough to cover the costs of my hydrotherapy and enough for paying a cleaner once a week to do what I used to do - it's all I ever wanted. So, I hope this is helpful to anyone who is enduring this stupid process with any claim - fight and, involve an MP!
  13. victoria conway

    Anxiety

    I have posted elsewhere about my current state. After advice from a good friend, who is a psychatrist, I finally admitted - to myself and my GP that I am clinically depressed. It is, apparently a common after effect of a stroke (and that's how I regard my SAH these days - as a bleeding stroke - said with different nuances depending on how I'm feeling!). I have started taking anti-depressants and have embarked now on a course of CBT - so far, it's about a month since that all started. It's been an up and down month but, with the combination of the two (I have seen the GP today and also talked to the therapist) - I am beginning to see the value of starting both and continuing, for the meantime, to do so. I so recognise your anxieties, Kris! This morning, I'd got up in plenty of time, even though, at the moment, I'm not sleeping well, and was sitting with time to start the puzzles in the paper when, suddenly, the clock chimed 11. My GP appointment was at 11.20 - a journey of about 10 minutes away. My brain said - you should have gone by now, you'll be late and I went into panic mode - trying to rush to find my coat, the car keys (rushing is counter-productive, always). But then I stopped and said to myself - don't panic - and the fact that I did that, I think, is evidence that the two courses of treatment are having an effect. And, I actually arrived early at the doctor's although he told me that, having related the experience - I had not allowed myself to look at my watch! The super-planning too - when I'm going anywhere new - or even somewhere I've been before! Already, I have a super-plan of the run-up to Christmas in an Excel spreadsheet and, by the time that is finished there will be a plan of every meal over the festivities, depending who is with us on each day. It is the only way I can operate now - the flexibility of coping with changing circumstances "on the hoof" has deserted me. Likewise, dealing with sudden changes when out and about - sudden noises, changes in levels underfoot, a large vehicle passing - I'm spooked. Once, long ago now, I had a little New Forest pony - officially for my children but, really, for me! His registered name was "Tiny Tim of Tomlins" - but he was known as Tim (when he was being good) or TIMOTHY (when he was being naughty - which was the majority of the time!) Tim saw invisible ghosts and ghoulies in every hedge or turning and, nowadays, I liken myself to him! He had been abandoned by his mother as a foal and was hand-reared as a result - a trauma for him. My brain, our brains have suffered huge trauma as a result of SAH so, maybe we're all a bit like Tim - I helped him and he never blamed himself for the way he was - he couldn't. We should learn to allow that we have suffered trauma and not to blame ourselves. I'm not out of the woods yet - and, maybe, I never will be fully - just as, despite really working hard at it with a wonderful hydrotherapist for two years now, I probably will never stop wobbling completely - but I'm a whole lot less wobbly than I was to start with. What I have managed physically, I can, can, can repeat with my mental state. Even though I will never do a can-can! Look - a sort of joke! Victoria
  14. victoria conway

    I don't feel depressed but...

    Sorry to have not responded before now. The world is a bit tough. I do try to sell to others - I'm trying to set up my own exit route from the charity. I have recruited someone - but she ain't me and my staff keep telling me so. That's one issue. The other (big to me) - is that she just won't or cannot just try to sort something out. The latest issue is complicated - needs some thought - possibly outside a box. I have picked up on it - suggested a strategy - I'm pretty good outside a box! The fact is, I won't leave the charity until I know it is well managed by someone else. How do I teach someone to think outside a box? It is probably the BIG QUESTION OF LIFE
  15. victoria conway

    I don't feel depressed but...

    Thanks everyone - I don't know whether I'm any better or not - it's a sort of yo-yo thing at the moment. I'm having some awful times and some real highs but I think ............ no I'm not going to ascribe it to anything. Whatever, I have set a process in motion and next week, I have an appointment with the CBT people - rather earlier than expected - and the next day will see that nice GP - the listening one. Let's see what comes out of it all. Meanwhile, Macca, you're so right about the beneficial effects of being a listener as well as one who wants to be listened to. For the past seven years or so, I have been the manager of a charity which helps disabled folk with financial administration - of their direct payments for care - from local social services or the ILF, a central government source - or of their benefits, where they don't have the capacity to deal with that. We operate solely in Devon and, I think, are the only such organisation in the country. Before my SAH, I was actively thinking about extending the same model into other parts of the country. That was a big think - it needs people who are prepared to commit - not wholly for gain but for care. There are plenty of the big or aspiring operations out there who want to do it for gain! Anyway, the SAH put an end to my big think - it was enough to cope with getting back into it at all. At first, I did about an hour a day before someone delivered me home, then 1 and a half hours ...... till I was working four full days a week. Then the other health issues struck - extreme hypertension followed by horrible sickness (now diagnosed as hiatus hernia with acute acid reflux) and I ain't getting any younger - I am now, officially, an OAP! So, I recruited ANO to take over my management of the charity - because succession matters. But she isn't me (and my staff keep telling me this) and she doesn't care like I do. Sorry - I'm digressing but I think it may all be contributing to the way I'm feeling right now. So, Macca, day by day, I see people who have been massively brain-damaged since birth who seem to be a magnified image of me - the same issues with stairs (fear), noise, hubbub, just too many people ........ and, would you believe it, all seem to have acid reflux problems! People help them to cope. I have no such angel. That's why I am suffering now.
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