DawnS

I am really rather worried about work right now. Since decreasing my hours, I have felt much better and this was manifesting itself in my personal work statistics. My Team leader was happy and I was happier. On the 13th of this month, a new system was introduced. It runs along side the old system for now and has created much more work as we have to use both. It has changed almost everything. I am supposed to take 10 calls per hour, but since the new system came in, I've been averaging at 4.5. We have 3 personal statistics to meet and I am meeting none of them. As you might imagine, my team leader has her concerns. I was added to a group for extra training last Thursday (we were the worst in the call centre!) and while this training has helped a little, it was still challenging because there were 4 of us in the group. The others were asking questions which diverted the course of the training so often that I struggled to follow what was being taught. There was no time to absorb anything before we had moved on and there was so much information, I couldn't retain it all. I spoke to my team leader at lunch time and she suggested that I be taken off some of the extra phone lines that I work on and merely book engineer appointments for a while until I get the new process firmly into my mind and then re-introduce one phone line at a time so that I can get used to it all gradually. Great! Only, she forgot and left me in all lines all afternoon. I will have another chat tomorrow but I am wondering, how much is it reasonable for me to ask for? Can I request that I receive one-to-one training so that the subject stays on track? Can they sack me for being so far below par? They have extended someone's probation for having poor calls per hour, but hers were higher than mine! I am worrying about this so much

Hi John, Sorry to hear that you have had to retire. I hope this has helped you health-wise even while it has no doubt floored you financially. Working is shockingly difficult so well done for sticking that out for so long. Like Mary, I have recently reduced my hours, I've gone down to 31.5 each week and while this has definitely helped, it's still exhausting to get through each week. Looking 'normal' definitely has it's draw backs doesn't it! I remember when I first joined BTG, I used to wish I could wear a badge or something...'please be patient with how slowly I walk, I've had a brain haemorrhage' or something like this:oops: Well done on the weight loss

I used to feel a springing sensation on my head, put my hand up to find out why and cut my finger on my drain. I'd be told not to touch it. Then I'd feel a springing sensation, reach up and cut myself, over and over. A friend would visit and I'd notice them and be surprised and ask them when did they get here? Then I'd reach for my drink, look around and be surprised to find my friend sitting there and ask them when did they get here? There is no capacity to retain information for quite some time. It must be very straining to have to repeat information over and over, but it's very scary and confusing to not know what's going on or why or to be able to retain any information for even a few seconds.

In the days and weeks after my bleed, I had no real conscious awareness of anything that was going on. My friend and her husband visited me and I've been told that I offered my friend's husband to have a grope of my chest if he liked for only a fiver! I have no recollection of this whatsoever and feel mortified when I think of it. Thankfully my friend understood and saw the funny side. The very early days are a strange time. The brain is doing it's best to make sense of the world in it's newly injured state. It takes time, but it gets better x

I worry about being considered lazy too. I wonder where we all get that from? My partner loves housework and he gets home from work and gets stuck in. I like to have a jolly good sit down first. As he's busy, i feel like i shouldn't be sitting and will start doing chores when i am not ready. We've been together almost 14 years. He understands my fatigue and doesn't want me tiring myself out on housework....so why can't i take that at face value and do things at my own pace??

Well done Win, fantastic progress xxx

Hi Mary, I don't know the medical reason for this...but when I was at the docs last week about my headaches he was testing my reflexes. He seemed satisfied to see that they were normal and explained that after sah, the body is in a state of high alert and reflexes are way out of kilter. I wonder if this could be applied to the senses too? A few of us experienced taste distorsions and changes in eye sight. Perhaps ultra-sonic hearing is part of it? While my hearing is usually much less sensitive than it used to be, if I'm fatigued it will be like it was the early days. When I'm tired, I can't stand the heater on in the car even on the lowest setting as the fan is so loud and don't use my indicators until the last minute as I can't stand the ticking. It would be good to know the real reason!

I'm 2.5 years in and although I am much, much better than I was to begin with, I have to say that I'm learning more about my abilities and the fatigue now that time has gone on. As I passed the 2 year mark, I found that I began evaluating where I am at in my recovery. While I still see changes, these have slowed down a lot and I began thinking that maybe the life I was now living wasn't the one I wanted to sustain. I had been working full time since Dec '12 as I changed my role to a new department (and new manager thankfully)and my 'phased return' which had been stopped at 20 hrs per week literally doubled to 40 over the space of one weekend.. I wouldn't recommend this to my worst enemy, but it was important at the time that I get the new role and work with a manager who had empathy and acted like a human being. I've reduced my hours at the beginning of this month and am still exhausted. Suddenly, I am learning that I've been approaching the whole fatigue thing so wrongly. I've been going and going and going with the thought in mind that if I'm going to feel awful anyway, then I may as well get things done and then wondering why I get headaches for days at a time. Now I realise that if I need to clean the bathroom for example, I can spread this out over a couple of hours. I clean the sink then watch a programme. Clean the loo and watch another programme and so on. Eventually, the bathroom is done and I don't feel shaky, have ringing in my ears or the sign that I've really gone way beyond - a metallic taste in my mouth. I saw my GP yesterday about the headaches and he told me that 2.5 years is still early days in the grand scheme of things and that I've to be more patient with myself

Weirdly, my utter terror of the dentist has evaporated since sah...it's one of the good side effects for me! It's great because I've wanted to have some minor cosmetic work done for years as I had a very brown tooth right at the front. It wasn't a stain and it wasn't dead and it was all I could see in any photographs taken and in an effort to hide it, I haven't smiled properly in years but I was way too terrified to be going to the dentist for non-essential work. I've been able to have most of the work done without any anaesthetic at all which is nothing short of astonishing. However, I've found being in the dentists chair extremely exhausting. As part of the cosmetic work, I had a large old filling replaced in my left incisor. When my dentist drilled the old filling out, he discovered that I needed root canal treatment even though there had been no pain and so a 20 min appointment turned into 70. My point in all this rambling is that although I was not anxious at all (I used to have full blown panic attacks at the dentist) when I got up to leave I felt very weak and dizzy and ideally probably should not have been driving. Luckily, this was booked on my day off and there was nothing else to do that day. I couldn't have managed it on a work day at all.

Sandi, it sounds like you have been supported well and are going back into this with much more information than before. It sounds as though you were the same as me in the beginning...when I first started my return to work, I had absolutely no idea what I was getting into. As I was returning to a job I'd already been doing for 3.5 years before hand, I couldn't see what the difficulty would be in carrying out the role itself. And perhaps there would have been no difficulty if I had been supported the way I have been in my new role. I started on 2 x 4 hour days and was floored completely. I was only paid for 3.75 hrs but had to fight to get that extra 15 mins back as a break. My manager couldn't comprehend why a break in a 4 hr shift was needed I sometimes wish I could go back and do it all again but armed with the information I now have. Hindsight isn't a wonderful thing at all, if only it came as foresight!

My new hours started on the 2nd Jan. Things already feel better. I still do a full day on a Monday and the other 4 days are really only reduced by 1.5 hours but because I start an hour earlier and have dropped one of my 30 minute breaks, I actually get home 3 hours earlier than I used to. Mondays feel awful, but this serves to make the rest of the week seem like a breeze (almost)! I have no idea just yet what the actual financial impact will be but who cares if I feel this much better I do find it difficult not to fill all the spare time up with other things. I have to remind myself to break things up, for example, there is no need to clean the bathroom and do all the ironing on the same day because there will now be time tomorrow. I don't feel like I have failed in my return to work. I tried full time hours for 13 months. I felt unwell and have found a solution that keeps both me and my employer happy - success surely! How is everyone else getting on with?

I don't have PMT as I don't have periods and haven't for years. I used to be on dianette as I had bad skin. I had endless headaches. I went to the family planning nurse for a check and she was absolutely horrified that I had been given any combined pill as my mum had died of sah and the family history should have flagged up that I shouldn't be on that one. I was changed over to cerazette (mini pill) which I am still on now. After the fact that I don't get headaches from it, the next best thing is that I also don't get periods and haven't for years. It used to be that you should take a break every now and then, but this is no longer the case. Brilliant!

As usual, I'm coming to this thread very late! It took me a very long time to get used to the changes. The frustration was very intense at times. I remember saying to my GP one day that I was looking forward to the day when I finally stopped finding things that I can't do anymore. He told me that it was amazing that I had survived at all and I really ought to look at all the things I could do. This helped, although it made me feel like a sulky child. I have found that practise is everything. I couldn't do the most simple maths to begin with. I found a kiddies app and practised as often as possible. Getting back to work spurred my recovery on for a while. My memory is much improved. Due to practise I can now cook. Over time, I started find good changes. I am nicer, calmer, more compassionate, less anxious. People like me more, even my partner. I like me more. It might sound very odd, but what worries me is that as time goes on and the improvements continue, will the old me come back? I don't want her back!

Di, I was going to post saying that I've experienced the taste thing but had no issues with smell until I read this post. I can often smell dog poo. This is usually late afternoon after my second teabreak. I go out for a walk in an area where dogs are walked and the smell is so strong I check my shoes! I've never connected this to fatigue before but that makes perfect sense. Thanks to Di for solving a mystery for me. So the answer is yes Win, I've experienced stange smells!

Hi Susan, You have got such a lot going on, no wonder you feel down and constant pain is so wearing both on energy and humour! Surely your neurologist should have thought of the wider picture for you - after all, he's the one that went to university for years and he should understand that after sah logic and reasoning is affected and nothing is simple or obvious anymore, how frustrating! I hope things pick up for you very soon, you have survived a huge event and you are much stronger than you think you are xxx

Hi Mike, What a lovely post, you sound very positive! I'm interesed to read that you have completed some courses successfully as I've been considering a short course myself and couldn't decide if I'd be able to manage it, your post has made me feel more confident that I can, but perhaps I will leave it until I've reduced my hours at work Congratulations also on your new relationship:-D Dawn x

Daff, I hope you are feeling better now? I've not experienced those kinds of symptoms, but I did end up in A&E for 8.5 hours a month after I left hospital as I had an ocular migraine. We had been told to get anything unusual checked out and as the GP was a locum, he sent us to A&E. They wanted John Radcliffe to look at my scan and discharge me rather than taking responsibility themselves. It was a long and embarrassing day, by the time I had the scan the migraine was long gone. It's best to get checked though and it's very good news that it's not your shunt playing up x

We understood what was happening to me when I collapsed because my mum had died of sah 9 years earlier. I guess a lot of what has kept me going is the thought that if I recover well and live a full life then her death will perhaps have some meaning.

I've has some excellent news today and I wanted to share with you all as you keep helping me so much with the whole back-to-work thing! My application to reduce my hours has been approved As of the 2/1/14, I will have a shorter working week. I feel better already just knowing that there is light at the end of the tunnel. Thank you so much to everyone who gave input, offered insight and encouragement, where would I be without you all?!

Happy Anni-versary Lynne! As others have already said, your posts are beautifully worded. You have a wonderful knack of putting things into perspective. I am in awe of all you have managed to achieve and I look forward to reading your posts. It's always good to hear positive feedback from people who have been living the post-sah life for longer, it provides hope x

I had a meeting with HR today to discuss reducing my hours. I'm not sure how it happened, but they seem to think I'm lacking confidence in my abilities and spent an amount of time reassuring me that they are happy with my work level. They even had stats to show that my work rate is equal with anyone else. They seem to have missed the point somewhat! Anyway, I've been told it will take two weeks before I hear anything and if it will take any longer, they will let me know. Fingers crossed! I hope everyone else is getting on ok with their work-life?

I'm afraid I am coming into this thread rather late, what an emotional rollercoaster you have been on! I wish you and your brother all the best xxx

I have handed my forms in today as my team leader has been on holiday. Thanks for the thoughts Sandi, but I have not given much information about the extent of the fatigue and symptoms it causes as I want them to allow me to reduce my hours without making them think I am not capable of work. I know that returning to work has brought many benefits, but I now feel that I was somewhat naïve about what exactly I was getting into. In the beginning, we try so hard and push ourselves because we want to return to our former lives which is perfectly ok and understandable, however I now wonder if we set a high precedent for ourselves and when things settle a little, we find that we have set the bar a little bit too high. That is certainly how I am feeling at the moment. It can take several weeks for the application to be processed and I sincerely hope it's accepted. I have actually only asked to drop 6 hours per week, it's not so much that it will make a bad impact on the business but enough that hopefully it will make a large impact on my quality of life.

I downloaded a Kindle book a few months back and it has been so very helpful and effective I thought I would share. I have to say though, if it's possible to get a hard copy I would recommend it as you need to flip back and forwards a few times. It might just be me, but I find that very challenging on a Kindle! This is a self-help CBT book called: Overcoming Insomnia and Sleep Problems by Colin A. Espie This book is actually a CBT course. You don't read it all at once, rather it should be read and actioned at a rate of one chapter per week. The whole point of the course is to help you develop a strong bed-sleep connection. For me, my bed had become my nemeses. My GP had told me it was better to be lying in bed awake than up and using my tired brain. I can see the logic there, but he was so very wrong. Part of the book discusses 'sleep efficiency'. This is the percentage of time asleep to the length of time in bed. When I started the book, my sleep efficiency was at an average of 62%. After working through the book, my sleep efficiency is now rarely less than 93%. I used to lie awake for several hours before falling asleep finally from exhaustion. Now, if I am awake for more than 20 minutes it's very unusual. It's such a joy not to have the hassle of being awake half the night!

Thanks for the thoughts there, it really helps me to get ideas from others. So often these days I miss obvious things and get stuck in a thought pattern. Discussing things breaks me out of it! I have a concern with the section of the form that asks the reason for changing the hours. The only real answer I can give is 'fatigue due to brain injury'. I have concerns about putting this down on paper, but my other half suggested that this is the best thing to write because it is the only reason for the change. I have fatigue because I have a brain injury and that's that. Am I being silly?