Gill C

I'm lucky in that a lot of my memory is unaffected, there are def hazy bits of hospital especailly in HDU where I slept most of the time I think. I do find I forget dates if they are one offs & have a def problem with time especially if its something out of a regular routine. I am a lot worse when tired & can forget a word easily, I find the best way is to talk round the word until someone supplies the correct one. In the playground last year I was talking about toys I had bought for Nathans birthday however I couldn't remember the characters name so had to supply Toy Story & not Woody to get to Buzz Lightyear!! It doesn't happen so often now but it does remind me how odd my brain is now! I also can stutter or fall over my words in an effort to get things out, this happened at the last Wessex meet cos I was so whacked out & starting with a bug

Dawn I agree with your friend, recovery takes time & acceptingthat some things that are no longer important & don't let them phase you is part of that. there are 5 stages of acceptance & despite thinking we are further recovered it really does take time. Denial, , anger, bargaining, depression & acceptance are stages to go through(I think that is the right order). When I attended a workshop on this at headway I was convinced I wasn't angry any more but in actual fact I was angry at everyone in the world for everything!! and I took it out on those closest to me. I found hardest bit was being angry at my boy for wanting the old me back, something I couldn't give him no matter how much I wanted it too. And despite being almost 'normal' to most people he wasn't fooled & knew I wasn't the same. I now think differently, he was the reason I got better & worked hard to get out of hospital so actually he is my reason for a good recovery. I still get angry & frustrated but I think this is where the lines between anger & depression are blurred, I'm not depressed either but I did become very low at one stage thinking I would remain fatigued forever. It's useful to down words that describe you pre sah & then post sah. I haven't reached acceptance yet but when I do there will be more positives for the new me than the old. It does take time so yes you are entitled to feel angry, its part of the grieveing/healing process http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

So chuffed for you Alison, the brain is a wonderful thing!!

Mike not wanting to trump your card but I had vasospasms during my op although my neuro said my anni didn't bleed, he said he'd never seen that before!Normally its the blood irritating the vessels that causes them to contract! I do like to be different!!

The Dented Image- i still don't have a copy but I know people from here contributed.http://www.amazon.co.uk/Dented-Image-Journeys-Subarachnoid-Haemorrhage/dp/0415386721/ref=sr_1_sc_1?s=books&ie=UTF8&qid=1331625325&sr=1-1-spell http://www.amazon.co.uk/Time-Out-Mind-Jane-Lapotaire/dp/1844080552/ref=sr_1_1?ie=UTF8&qid=1331625221&sr=8-1 I read this one but its not for everyone & I would say not a typical sah recovery story but it is useful to see someone elses view

Lisa remember you are never alone on here but I am sure we all identify with the isolation you have when you first come home. I didn't know if what I was feeling was normal or if I should be worrying about what I felt. I was lucky & found BTG a few weeks after discharge & honestly couldn't have coped without the info & support from here. I have a neuro specialist nurse I can contact & in the early days the neuro registrar gave me her email so I could contact them if I was worried. Problem was I was worried about everything but thought they would be too busy to help dealing with 'serious' stuff. Once I knew that what Iwas feeling was normal I gave myself permission to feel that way, I too felt I should be grateful as I walked round with my anni for 6 weeks before it was finally found & made it through. I didn't feel lucky, I felt everything but lucky. In terms of acceptance of the new me it does take time & one of the biggest steps was contacting Headway & then going & admitting I needed help with the emotional side of things. I also had some CBT with the nuero pysch which was good although not entirely what I wanted as I wanted counselling to help me deal with the fact that but for a turn of a card I could have died. I still find talking about what happened to me hard although now the scar is gone, the headaches are mostly gone & I have no issues apart from my right eye. Almost 2 years on it seems like a bad dream but the fatigue is very real still for me, I have learnt to accept it for the most part but I still get frustrated . Hang in there hon you are def not alone & we're always here for you

Hi Mike & welcome to BTG.This really is a godsend for us survivors so we can share the common problems & support each other through good times & bad. xxx

With me its about withdrawal from whatever is going on around me, I become quieter & my smile is much more strained, The more tired I am the further inwards I reatreat. I'll then start to hit the fatigue 'wall' & get flu like aches & light headedness/woolly feeling, I start to lose my track of conversations & then lose words I am looking for. I know if I don't find a quiet spot to rest by brain says right no more & shuts down making me physically incapable of doins ng anything. Now I know the warning signs I tend to head them off at the pass but if I'm too busy to notice it hits me hard. This happened at the last support group meet & by the time hubby picked me up I was wobbly & white & feeling pretty rough (I was also coming down with a bug which wouldn't have helped).A good rest/sleep usually sorts me out whereas a year or so ago it might have taken a whole day to recover.

Lizzy hi & welcome to btg, sorry I won't get too close but i am suffering from the mother of all throat infections right now & Donna seems to have caught it off me & I don't want anyone else to catch it!! I too was treated at Wessex( as you are in Souhtampton I assume you were? & as much as it pains me to say it you are very early in your recovery. Before you run away from the screen shrieking in frustration it is a huge thing that you've been through & the SAH nurses estimates of 3-6 months recovery are mainly based on physica recovery & does not take into account the fatigue we all suffer. At 2 months I was just about taking my son to school but getting a taxi back (we live on a hill)& then my hubby was picking up both up at lunchtime. That was the limit of what I could do & sometimes I would arrive at school breathless & sweaty & shaking!! I was able to be on my own but was housebound really as didn't drive until the Oct (I was clipped in June). The 2 flights of stairs to our bedroom felt like Ben Nevis & i would frequently go back to bed during the day to sleep. It really is about taking things one step at a time. listening to your body when it's tired & drinking lots of water for the headaches, thankfully they don't last forever & I rarely have one now (2 years this June) & when I do paracetamol & lots of water is the top tip. A few of us Hants people have met at the Wessex meets which are proving to be very helpful & the next one is April if you'd like to come. xxxx

I can't apply mascara, I get it all over the place. I also can't do a toe heel walk (the one the police ask you to when drunk) & they were things i was never aware of until out of the blue I tried to do them. I have a major problem with dates which isn't so much memory as a complete blindness to what I write down or agree to do on a date & then when I transfer them to the calendar I put them down wrong. My friends birthday is valentines day & this time I wrote it down on the 15th!!

alison its us sending you the hugs you need. Don't be too hard on yourself this is a very tough thing to watch loved ones go through & at present there isn't much you can do. I know when I was in HDU my hubby was very worried as my face on my left had drooped & I was slurring my words & he tbe takinghrought that was the person he would home. Chris's brain has been through a huge trauma & at present is just trying to carry on the basics, once that healing gets futher onwards he will start to settle as the brain rewires other parts of his brain. Rehab is absolutely the best place for him to be & you must not feel his behaviour is in any way your fault. Things will improve but it will take time, push for the rehab unit to take him as soon as poss, athough I suspect that the wards may push for that too if they are unable to deal professionally with him. Please also speak to headway & see what support they can offer you NOW, not when he may be coming home but now when you need the support the most. Also speak to your GP & try & get some help with counselling if you can. I there a neuro nurse from the neuro unit who you can speak to for advice. Please also remember you havs us on here holding you hand. bless you Alison my thoughts are with you, be strong xxxx

I submitted my licence to the DVLA & it was only after several phonecalls that they told me they had never actually revoked my licence & I could continue to drive until a decision was made otherwise. Backwards logic to me but Ididn't actually drive until I got my official all clear whice mainly took some 5 months. As SBN says it seems to be up to your GP as although my eye cons wrote to the DVLA I had to get the neuro & eye cons to write to my gp as she was concerned with the specific wording on anyurisms which can be very ambiguous. Once my GP was onside it was a done deal other than informing the car Ins people which again seems mad cos they don't keep a record of it but by law we have to jump through the hoops. I thought I could drive right from after coming home but for my own peace of mind I had 2 refresher lessons with driving instructor friend & if she was happy then so was I. With having single vision my main problem is estimating distance but as it always tend to be under than over that is the safer option!!

I actually nagged them on an almost weekly basis as I didn't want to drive until I got the all clear. I was told my licence was never revoked & i could drive up until they made any decision otherwise. I had actually sent them my licence & it took a couple of reminders to get it sent back once i was given the all clear

My anni inflated in April & wasn't operated until June so I don't fit in to a season.

Wessex were very good at keeping the jugs filled up & watching it we ate although no help was given so if you were unable to eat that was it. we were expected to drink 3litres of water a day & the reminders were constant which meant I wore a goove into the floor from my bed to the loo as I don't drink much normally. They were also very good a quiet time & the lights at night were down low, I had a tummy bug in there hence having the side room for a few days but never found out what it was & as far as I was aware it was never treated. It's true that we had to go & find nurse for other patients who were unable to get out of bed but that happened to me in QA when I was in there, I spent some time on the stoma ward & that was really unpleasent when a bag was changed!

Maybe thats what she meant when she said you cN do it in bed? if it is then she never found it & I sat with a faceful of soap over the sink, luckily I was in a side room at that time so not in view of the whole ward, I even had an en suite but they wouldn't let me shower there. I really missed the bath, the one on D neuro wasn't plumbed in when I was there so that was the first thing I did when I got home. Despite its flaws Wessex is a centre of excellence for brain injuries & I was so fortunate to be there. One of the girls in the bed next to was discharged to Winchester & she said it was awful as the nurses had no idea how to care for people having undergone brain surgery so i am thankful for the good nurses I had (Natasha, Zoika, Gill) & the efforts to keep things as restful as possible with the blinds being drawn for quiet time.

Donna I was scared witless about my clipping as I had never been put under for an op before. Actually it was a breeze & i remember only going down & then waking up in recovery & the nurse saying I'd been done!! Its natural to be nervous but I am sure you will be fine & the pain that you are suffering will be gone forever!! Thinking of you tomorrow sweets xxx

I too was in southampton , HDU was awful as we never got spoken to by the nursing staff as most were in a far worse state than me & unconcious. Food was another thing that rarely happened in hdi as agian most people weren't up to eating. I didn't have a buzzer in there so had to try & catch someones attention to come to me rather than buzz. They wouldn't take my cathete neurr out & when I hadn't been properly in 3 days (prob due to the lack of food) they gave me an enema (TMI) & then had to change me & the bed about four or five times by which time they were rather less pleased! They also spent about 2 hours trying to get a long line in to measure my bp because I was on steroids to raise my bp & increase the blood flow to my brain & in the end they had to put it in my left shoulder cos my veins elsewherewere too narrow. I had puncture marks on both hands & wrists for months afterwards & now have stitch scars on my shoulder from the long line going in. D Neuro was much better but I kept asking to wash my hair & they wouldn't let me until about 10 days post op, they do have backwashes to do them on the bed but she couldn't find one so I sat with my head over the sink. I also had the catheter in whilst on there & it took some persauding to get them to take it out & let me use the commode. At night there were on 3 or 4 staff on & they would disappear for the commode & then someone else would buzz so I buzzed again & was told off by the nurse for doing so. I needed to go right now so it was the commode or change the bed!! On the other side of things one day I was having a minor panic attack thinking I would never get home because my blood flow in my head was too high still & I jsut needed company so one of the nurses brought her files over to my table & sat with me & kept me company which was exactly what i needed. In general most care was fab (but not the showering for the first time on my own when they had been so careful not to let me do stuff too soon) & compared to what I had in QA when I was last in there it was far superior in terms of numbers etc. Its hard when you are bed bound to seeanything good but I know I missed their care when I came home to absolutely nothing. Yes our tablets were late too, our meals were often late too. when they wake you at 6 for obs its a long time to 9am for brekkie & we had no toast as one of the nurses had blown the fuses in the kitche and yes in general the food was too but I am so glad to have had the excellent Mr Sparrow operate on me otherwise I woldn't be here I think the staff on the neuro wards are under huge pressure & hugely understaffed, personally I found a lack of empathy to be a problem particularly in th younger nurse who may never have been in hospital themselves. We did suggest to some of them a day in a ilbed unable to get out for any reason should be a part of the training to make them understand how vulnerable a patienr is & how dependant on them we are, I think it gave them food for though

I'm the same as louise, don't get dla because I can wash & dress myself, cook a meal & drive. I did have to go to a tribuanal to over rule the decision that I was not entitled to ESA, it took less than 5 mins & it was done but it was hugely stressful at the time. I had another medical form which I had to fill in at the end of last year & this time I send loads ofsupporting info from the Brain & spine foundation website & another publication from the USA (Mary has linked to it somewhere on here. I was expecting to be called before Xmas but to date I have heard nothing. I did tell them there was no change in my medical situation, my eye is still as bad as it was, my back is still the same (nothing to do with the sah)& mmy fatigue is the same if not worse. I know that in July I will have had my 2 years of contribution based ESA & then probably as hubby earns a fairly good wage (after many years of earning a pittance) si I will probably get very very little. We get no other income for me, nothing on council tax & not even free presciptions or dentistry as contribution based ESA is exempt from these things GRRRR.

I have alarms set on my phone for the school run (I did turn up late one day) & for star box day, I am fine in routines but changes in that really throw me. I have a problem with dates & time, have turned up to a Dr's appt an hour early twice. I turned up a day late for a hair appointment & the next time I was a day early!! I find repeating info to myself about dates & times help but I am not so good at remembering names or faces which is more difficult. Headway told us to visualise something to do with the persons name or rhyming with the name, if there is lots of info to remember to try & group the info into similar info so colours, or furniture or types of dogs for example. I have also gone through the alphabet to remember someones name, takes a while but I did get there. As for fatigue I try & avoid situations that tire me out & spot the warning signs early on (I can feel myself withdrawing) & try & get home before it becomes a major issue. I do still avoid certain situations & there are places I dont go on my own any more simply because I am not so confident now, I find busy places tiring &because my right eye is patched still I feel less confident in busy places cos I can't judge distances & bump into people, my balance is also not so great soI am less confident on uneven ground.

Dawn sending you huge hugs but no you are not alone.In fact I would say you see your GP more often than most of us!! I was discharged from Wessex at my 3 month review & my GP didn't really need to see me so I had absolutely no after care whatsoever. I think most people say the same you go from 24/7 care on the ward to nothing at home & is really scary!! I thought I was doing ok on my own & did make lots of progress but emotionally I was a wreck. My GP friend asked me how I was doing emotionally & I just burst into tears as no one had thought to ask me that before. I then contacted Wessex & asked for counselling. That was in the August & a referral was done but I waited a long time to be seen (it was almost 12 months in the end) & was then invited to a mood management course with other stroke & brain injury survivors. What I got was not counselling but CBT which was ok but not really what I needed although there were some useful pointers about negative thinking. I got most help from headway & I saw them at 6 months post op, it was a huge help to me so may be have a google & see if they have a unit in your area. all in all the biggest help was from BTG, I don't know how I would have coped with being on my own without it. If you feel you need help do talk to your GP, I left talking to mine about how I felt for over a year & wish I'd done it sooner. You are never alone on here hon xxx

I haven't worried about lifting stuff but I know my neuro said not to weight lift straight away when I joined the gym. I swam once I got the all clear but soon found myself too tired to do all the other stuff so I stopped going swimming. I know I need to do something so I plan to walk every day increasing it each day. I still guard my head & am scared stiff of banging my head at any time. The snowy weather scared me solid as I didn't want to slip & fall backwards. I have skidded a few times in the house but I always protect my head. I know my clips are secure but its the thought of what could happen to my skull where the staples were!! Good to know I'm not the only one though!!

I used to get tingling on my face when I had a migraine, the left side of my body would go full of pins & needles including my gums & tongue.

I emailed the Brain & Spine Foundation for their advice, this is the reply (pertinent to clipping as thats what I had)

Alison I've posted on your other thread about my Dad's stroke & his behaviourxx