sallym25

Carl,

Thank you for posting that link. I have printed it off for my doctor. I'm concerned she will disregard it. On my last visit she informed me that because my haemorrhage was not caused by a blow to the head or a RTA it is not classed as "traumatic".

Hi Mark,

Welcome to BTG. You will find lots of help and advice here. So sorry to hear you and your wife are still in the dark over what exactly happened that night. I too have been left with an upper left quadrantanopia and my last application for my drivers licence to be returned was refused after they took a whole year to decide ( sent me for all sorts of eye tests and assessments). This eye problem in itself has given me so much trouble I wonder sometimes if it is the cause of much of my confusion. I was due to visit cyprus three weeks after my haemorrhage and had to cancel. I did eventually get there in 2010 ( a year later). And flying was no problem at all. Hopefully your doctors will give her the go ahead and you can get off there soon. There are quite a few people here with unruptured annies and I'm sure they will be able to reassure you more.

In reference to your other post today where you mentioned your recent conversation with your wife, I think we all find the emotional side to be just as debilitating as the physical stuff. I am now reaching 3 years on and have found this is no longer constantly at the forefront of my mind.

Good luck with getting some concrete answers to what is going on for you both, and do enjoy your holiday.

Sally. x

Ps. I do know of one other girl with quadrantanopia who has been allowed to drive again. So there is hope there too.

Thank you all for your replies,

decisions decisions, I'm duff with those. My husband says "try it" and my boss says" you won't be able to do it". Trouble here is I'm too twisted to take anyone elses word for it, but not sure I can trust my own judgement any more. :confused:

David, while we are working here we pay a fee to the government called 'national insurance'. This is to cover us for any benefits we might need to claim if we become sick. I have paid my dues with this for the last 30yrs. However the government have made a new rule lately that 'ESA' ( the benefit I have been receiving) can't be claimed for more than 360 days. Times up now for me.

Carl, I haven't had any dealings with headway, although I did make an attempt to contact them in the past, No one rang me back and I discovered it was in a town which I am unable to get to via any public transport. I may call them and ask if they could help me in any way with this. I've nothing to lose now. Thanks for bringing it to my attention.

Kel, I've told the family i need them to help with housework till I'm blue in the face!! Deaf ears on them lot.

Mr Scoobs, Haven't been able to get my licence back and am 3 yrs on now! I was a delivery driver with home shopping company when I had my SAH, but I've lost a big part of my visual field now and am fighting with the DVLA, who say I am still not fit to drive. Wish they'd tell the DWP that!

Carolyn, I have wondered how I would deal with things if I go for the factory work and discover I'm not up to it after all. Not sure it would be easy to change my mind. Admitting defeat has never been one of my strong points.

Win, is going to see an MP something I could do? I'm not sure what I'd be seeing him/her for? Would it just be a personal thing or would I have to raise the issue of them stopping everyone claiming for more than the one year? If I can get my head straight on this one I might just do that. x

Sarah, It is the housework and keeping the family that wipes me out. If I could do the full time and not have that to worry about when I get back I think I could be successful with the sewing. But the other stuff on top is just too much for me. I don't know how you do it. and 3 jobs is just beyond me. Well done you. xx

So, once again I'm undecided about what I should do about things. Wish I had some of the oomph I had in my 'old life' again.

Thanks again all,

Sally. x

Hello hello,

I have had it with all this 'red tape'. In the last week I've had seven different letters containing three different finish dates for my ESA, one with notice of a withheld payment I am possibly due but won't be paid out while they "investigate a possible overpayment":shock:, and one saying I need a medical certificate as my year in permitted employment is ended. Confused? ... you will be! They now say it's either give up the job or give up the appeal.

Neither pays more than £95 pere week. The doctor has refused to give me the certificate because I do work and the appeal can't go ahead without one. :confused:

I am now seriously contemplating an attempt at full time work. I have been a part time worker since my children went to school in 2000. I was earning more then than the full time will be paying and home life will defo suffer due to my need for rest in the evenings. However, I've been informed this week that the sewing company I was with before I had my family are taking on staff and if I don't move quickly I may miss the opportunity to try. I'm hoping it will turn out to be a big step forward in the moving on of my recovery and in the end I will feel more like my old self again.

Wish me luck?

Sally x

Hi again,

I've now got a second bundle of forms. Once again I'm not sure they're the ones I am looking for.:confused: Says on the front I " want to be considered for income related ESA. Nope... that's not right! I want them to reconsider my application for the same income unrelated one I was already on! I paid my contributions faithfully for 30 years. ( even when the parcel delivery company insisted on classing me as "self employed" ). I see they have a sentence in there which states I must have paid full class 1 or class 2 for the last 2 tax years? as I have been unemployed since SAH 3 years ago now. that would rule me out of it. Help?? Is there anything I can claim at all for my "limited capacity"? Which I DO have even if they can't seem to recognise it without new reports from all sorts of ologists etc.

Any suggestions would be gratefully appreciated.

Sally.x

Good luck Tom,

Hope it all goes well for you. Do let us know how you get on.

Sally. x

oops,

I did get it wrong, sorry. Good luck next Friday. Hope it isn't too stressful. Tell them nurses hello from me too.

Sally x

Hi Tom,

I have been struggling to keep up to date with everyones goings on recently. Am I right in thinking you had your angio yesterday? If so I'm glad it's over for you and hope you get the positive results soon. Am sure your nurses would have been thrilled to see you again. They told me they rarely get to see how their patients have improved since leaving them and are always very proud when they do.

I noticed you talk of not reading papers or watching the news in order to avoid hearing all about the bad things going on in the world. This struck a chord for me as I remember feeling exactly that way too. I couldn't see any good in anyone having to go through life with this world in it's current state. One of my neighbours visited around that time and talked about having to lie awake late into the night waiting for her son to arrive back from the local nightclub safely. She has another 3 sons ( all 2 years apart) and I remember thinking " how can she be content with things when the next six or seven years for her will be filled with this anxiety?" I really had it bad then. Thankfully I knew I had to deal with it quickly and the doc gave me some anti depressants which helped me enormously. I have never felt like that again. I am still on my tablets ( 2 years later) but am happy to take them for as long as needed in order to never go back there. I hope you can find something soon to help you in the same way.

If I have your appointment dates wrong, all the best for next week. Hope it all goes well.

Take care,

Sally x

you're not alone Donna,

Hubby and I have talked finances again tonight. We have no chance of managing on only his wage. We are now considering selling the house and getting a flat. I would really miss having my garden too.

I have had another two letters today. One tells me they have received my request to appeal and the other says something along the lines of them holding an arrears payment while they query having made an overpayment!!! Can't speak for you, but I know I'm well baffled by that one. :confused::confused::confused:

I printed a copy of the DWPs guide to ESA- work capabillity assessment. On assessing myself, hubby and I agreed I should have at least four 6s in there. Their assessment gave me one 6. They made a whole load of statements about what I can do and what I said I had done but completely omitted to mention anything negative I added there.I am livid and have decided I will go for it in full battle mode. Left the gas ring on today again and started a register of anything I do wrong. Made an appointment at the opthalmologist to finally register myself partially sighted ( forget the driving then) and will be asking the phycologist and doctor for reports now.

The most annoying thing is that I had to do all this before and won. I guess it's possible I may have to do it forever at regular intervals. Will they ever work out that I can't explain it cos I don't understand it either.

Get your suit of armour dusted down right now lady. xx

Hope you feel better in the morning.

Sally.xxx

Ps, I can't find any section which relates to loss of eyesight! I think that should get me another 6 too.

Macca and Liz,

I'm so glad you posted this one. I will be printing this page for my doctor to read. I already mentioned the state my nails are in now and the spots and flaky skin. I NEVER had nails like this, which look like I've been biting them all my life. I did have spots in my teenage years but they have been popping up four at a time now for quite some time. I like to tell everyone it's just a reminder of me still being "young". Hope I can get to try oout this treatment.

Sally x

Hi Alison,

I look forward to reading replies to this thread. I think this is what my psychologist was suggesting I have too. I struggle to understand all the terminology they use, but think it's got something to do with being unable to plan and organise things. I definitely feel lacking in that department, so wouldn't disagree with her there. Have they offered you any translation in normal everyday language that could help to make it easier to understand?

I hope someone can come in soon and help here.

If I have to sort things out for particular occasion or event, I can pull things needing done out of my head at sporadic intervals in the run up to it. However I never seem able to actually arrange it all in my head at one time. My husband is becoming used to this now and regularly checks how any arrangements are going in days leading up to the deadline.

My daughters birthday is tomorrow and I have sorted all the decorations and presents gradually over the last 2 weeks. Am not aware of anything being forgotten and hopefully will find I got it right in the morning.

I will be watching this thread with interest now. Thanks for posting it.

Take care, hope Chris is doing well at home.

Sally. xx

Hi Tom and welcome,

I had my op in the southern too (2009). Luckily there was no delay with misdiagnosis and I really cant fault the hospital. Sorry to hear though that you've been discharged with no definite knowledge of the coilling situation. I'm sure if you call them and ask they will get back to you quickly. If not, your gp should be able to help by reading through your files.

Don't be disheartened by the mental and emotional issues you will be feeling. It's very common after such a trauma and you will see from this forum we all seem to have the same worries. It is a great site and really makes you feel part of a team rather than completely alien to the world around you. It has helped us all enormously and we have made some very good friends in each other.

Make sure you rest lots and give yourself plenty of time to recover. We all have been surprised by how long it really takes. If you try to rush it you may disappoint yourself for pushing too far.

Hope you will get positive answers about your op and feel better about it sooner.

Take care.

Sally. x

Me again,

Called the benefit people this morning and am being sent a form too. Not exactly sure what it's for. Couldn't follow what the man was saying to me. Wasn't sure if that was down to his accent or my inability to keep up with conversation. I had my medical last week so cant do anything about that now. Am concerned that he didn't test the visual field as I think thats where I got my points at the first assessment a long time ago. On a good note, the doctor had a bad stutter and I wonder if that's a brain issue too, which would have possibly made him more understanding of neuro problems.

I am sooo disappointed by all this and wonder why anyone would go to all the bother it involves to try to make claims for anything they feel they aren't really entitled to:confused:.

Sally. x

PS.. so glad to see you're onto this Lynne.Think we'll need your specialist advice on it. x

Hi Gill,

I didn't see this post till now. I got my letter today saying mine ends on 30th April. I am very shocked by it and I now see it's been mentioned in the green room too. ( Had my head in the turkish sand again I guess. )

You mentioned appealing to be put in the "support group". What is the difference in the groups and how does one qualify for this?

I've been struggling financially since The massive gas bill 2 months ago, and still have a balance outstanding on it. Kept my spirits up by telling myself once that's out of the way I will be better off. NOT NOW! That will be my income down to £95 per week. How can they expect me to get by with that. There surely must be something in line to replace it?? John works more than 24hrs pw too. It doesn't seem fair that I paid all my taxes and NI for all those years to be told I am only allowed to contribute minor things to the family lifestyle now. Wish I had the ability, energy and motivation to earn sufficient wages and cover all the household chores again.

Hi Debbie and welcome to the forum.

your post jumped at me when you said " just feel a bit useless". I remember saying the same in one of my early posts! Please please give yourself a lot more time to come to terms with what has happened to you. I myself am surprised at how much we can accept things over time. I know thats not what you really want to hear at present, but I have had those feelings too and found we change our priorities over time. I always believed that my childrens welfare was first in the priority stakes and although that hasn't changed for me but I have come to realise that lots of other things I believed were high on the list, really aren't.

You take things easy for yourself and you will be able to fulfil the roles prioritised by you.

I've had the dizzy floaty feelings and after almost 3 years I still occasionally feel "strange". The main thing is to feel you are improving week on week. In the early days, as you are, you should be able to notice radical improvements. As time passes, this will slow down, but any improvement is a positive thing and I believe these never stop slapping us in the face. I will never give up hope of complete satisfaction with life now. We have been thrown into the unknown and I now think that makes us better people in the long run.

Good luck with your recovery and don't hesitate to ask any questions. There are so many people here willing to support each other and all have different situations. we all have the same goal though .

Take care of yourself and give it time.

sally xx

Hi Lizzy,

Had to comment on your last post re the sleep requirements. I'm almost 3 yrs post op now and came home from work at 5 last night, slept from then till 9pm, then spent a couple of hours trying to compensate for not looking after the 'clan'( and relieve myself of the guilt I felt) . Ran round feeding everyone and tidying. By 11.30 had to go to bed and slept like a log till 8.30 this morning. Fortunately, I feel great now and have the house to myself. I have already made up for all the lost time and caught up with all the chores. I've even prepared everyones ballgowns:smilewinkgrin: for an engagement do this evening.

The fatigue definitely seems to be a long term thing for me and I'm still trying to balance the work/rest situation. Time I accepted it's ok to rest as it gives me a little motivation for later and the family will benefit from that.

As Michelle says, you're so lucky to be near enough to get to those hospital meets. I wish we had something similar here.

Good luck with your recovery, take your time and look after yourself. It's more beneficial for the family too if we take things easy and go slow.

Sally x

June 19th 2009 for me. Missed a lovely hot summer I did!

Hi Donna,

Am glad you posted this one. I do this too, but had no idea how to explain it to people. Looks like it's quite a common after effect now. That's reassuring. I dissapoint myself in situations like this by making it obvious through my facial expressions that I'm confused. Then I feel worse because others are aware I'm not totally 'normal'.

Michelle can confirm my zombie existence too. I 'lost' 5 different items during my two day stay at hers last month. ( handbag, bus pass, purse, phone and cigarettes! Luckily I got all but the cigarettes back. Sandi's diagnosis of not forgetting it, but not retaining the information in the first instance is quite interesting. I wonder if I possibly do it that way too as my phycological memory testing seemed quite promising.

You keep smiling now, you're not alone with this.

Sally. x

.

Hi Shirls,

Welcome to the forum. You will find it's a great help to talk to other people who have experienced what you're going through. I was quite convinced I was the only one in the world like this till I joined here. Had mine in June 09 and was also in the Southern. It hasn't been easy as I'm sure you will know to reintegrate into the 'old world' again. Things have changed for us all and time helps us to overcome our hurdles and develop new coping skills. Take your time and allow yourself to improve at your own pace. I think we all suffer emotionally and phycologically after SAH. Your family will also likely be struggling to understand any changes in you. Good luck on your continuing recovery and feel free to vent your thoughts to us all as someone will always be here to listen and advise.( Great bunch they are!)

Look forward to hearing more from you.

Sally. x

Ian,

I have completed your survey and found it did not bring back memories for me. I really don't remember much about that time at all though. I hope that by answering the questions which differentiate ( oops... spelling?) between early aftermath and 2 years later will help to show how ( in my opinion) others absentmindedly expect we should have made a full recovery and be totally regular( hate the word normal) people again. That did make me more aware of how much people need educating about this kind of stuff. ( including those who suffer from it) Hope it's been a helpful contribution anyway.

Sally

Hi Sandy,

My surgery was on the right and the burr hole is at my temple too. My scar is also down to just beside my ear lobe. I have had 3 trips abroad and had no issues with my head during flights at all. In fact I would go as far as to say I have less ear pain on the descent than I had in the past. Have a great time.

Sally x

Hi Gaynor,

Welcome to the forum. I love to read posts from people who show signs of wisdom and am always impressed when they're younger than me! Sounds like you are doing a very good job of coping with your situation. Love the "thingymigysm" reference, and know exactly how it feels to ask yourself if survival is the best option. Fortunately I have now discovered it is. My aneurysm ( which I wasn't aware I had) burst and the artery was clipped. I still get low occasionally when I realise I'm not as clever as I once was. But I'm slowly slowly starting to realise that although the new me is different , she's not a bad person. It has taken me a really long time to believe this and I think I still have some way to go before I am totally accepting of things as they are now.

I see you've mastered the art of USA speak during your short time there. Hope you will continue to have your positive outlook and your good days outnumber the bad ones very soon.

I hope you will call in again and keep us up to date with your progress.

Take care

Sally xx

Hello Robert,

Welcome to BTG. As michelle says, we will look forward to hearing you're doing well after your op. Be sure to keep us updated. Sorry to hear you've already had to have 2 in the past. I'm not sure I could have dealt with all you've had to endure. Can you tell us how you felt regarding the difference between the clipping aftermath and the coiling one? I am interested to hear how this was for you. I myself had a clipping and am struggling coming to terms with not being able to do all I could. I'm not allowed to drive yet and am wondering if I am possibly still in denial. Though I don't hate my new way of life just so much now.

Hope you are feeling good today and can prepare yourself well for the forthcoming events.

Sally xx

Samantha,

So sorry to hear about your friend. This is obviously one of the last things you need to be dealing with at present. Have you spoken to the doctor about depression? I do remember feeling like I'd rather not be here as life was just a long journey of one stressful thing after another. I was taken aback by how strongly I believed this to be true. I am certain the only thing holding me back from "sorting it myself!" was the thought of what that might do to my children. I spoke to the doctor and he gave me some fluoxetine. I no longer think that way and am so so grateful for that. It has truly made a difference for me. If you haven't already done this, please try it.

Take care

Sally x

Hi Sharon,

Welcome to the forum. Sorry to hear about your Mum. Don't give up hope. I think you have helped us too by making us all look back and realise just how much we have improved over time. I know I behaved very strangely in hospital and my husband has told me he queried his ability to look after me long term should I stay that way. Now, 2 years down the line, he leaves ALL the housework to me . ( I remember he promised not to do that too)!

Your Mum will improve, it just takes time. Some things longer than others. Look after yourself too. She will come to understand just how hard this has been for you. I personally think my family had a harder time in the initial stages than I did. Most of it I have no memory of, and it's likely to be that way for your mum too. I do remember all from around the third week on and know I came to a point where I thought " I owe these people (medics and close family) so much, how can I ever repay them?" Am still certain I never really can.

I hope things improve quickly for your mum and you feel less anxious about the situation. Hang on to hope and keep us updated with her progress. Hopefully we will be conversing personally with her before too long.

good luck

Sally xx