DawnS

When I was doing my phased return, I found 16 hours to be about perfect. I was managing to work and get other things done too while remaining cheerful. When it went up to 20 hours, that was too many. It's not that I wasn't managing as such, it's that 'cheerful' ran away screaming. I am contrated to 37.5 hours and if you include breaks, I am in work for 40. I've done these hours since Dec 3rd last year. There are so many days when I could happily amputate my own head by 15:00 but still get through the next 2.25 hours somehow. I get home and do nothing else. I am in bed by 21:00 if I'm having a late night and if I go to bed any later than that, I PAY, usually with a complete inability to get to sleep which is still my main issue these days. When I'm struggling, I like to think of this quote from the movie The Best Exotic Marigold Hotel: 'everything will be alright in the end and if it is not yet alright, then it is not yet the end'. It makes me smile

I had taste distortions for many months where what I was eating (even if it was sweet food) would suddenly taste like either salt or fish yuk! In general, nothing tasted like I remembered it tasting for a very long time. Either everything is back to normal now or I have become used to the changes. If I am overdoing things, I will get a metallic taste in my mouth that doesn't go away until I go to bed. And my likes and dislikes have changed massively, it's weird!

Good Grief, what a way to test the theory! Glad you are ok now though x

Hi Rachel, I am so sorry for your loss. What I remember most about my sah was the noise. I assume it was the blood going where it shouldn't be but it sounded like someone had started up a chainsaw right next to my head. I did lose consciousness immediately, but then regained it for almost an hour before losing it again. I have no real memories after getting to A&E. Like Daff, I am no longer afraid of dying which is a nice feeling because I'd been terrified of it since my mum died of her own sah. Dawn x

Fantastic news Daff, enjoy xxx

Hi David, This is a difficult one, I don't think I have an analogy as such. The onset of flu is about right, but for me it's also like I've spent the entire day drinking coffee (I don't touch the stuff) or like I took pro-plus right before bed because although I'm always exhausted getting to sleep is as much of a challenge as getting through the day is. It feels like I've worn an itchy scratchy woollen jumper on the top half while my bottom half is in rapidly setting concrete. By 14:30, I ache, am irritable, shattered and have a tight band around my head like someone has put a belt around my forehead and is pulling with all their strength. But there are still 3 working hours to get through. When I get home, I do watch tv though it can be an assault on the senses so it has to be something I really enjoy. Like Mary, it has to be on quietly too. Often by the time I get home, reading is not an option because there is not enough brain space for it. My Nana only phones me twice a week now, but after taking anything from 60 - 84 phone calls at work, talking on the phone is not my favourite thing to do in my free time. The only time I really remember feeling this way before Sah, I woke up the next day covered in Chickenpox and had to have 6 weeks off work.

Hi Rachel, I am so sorry for your loss, it's such a hard thing to come to terms with. My mum was also 48 when she died of sah ten years ago. She had always had headaches and migraines but they were never seriously checked out. One day she came in from the garden, told my dad she felt weird and that was the last words she spoke. By the time I got to the hospital (300 miles away) her pupils had blown and the brain damage was extensive. They didn't even insert a drip to hydrate her let alone consider surgery as the bleed was so extensive, there was no point. I have very mixed emotions about the fact that 9 years later, I also had sah and survived. Why? Perhaps because my partner got me to hospital within minutes whereas my dad called out the GP. Perhaps because my mum died and so my partner took me very seriously when I said that something was very wrong. I don't like to think that the reason I am here today is because she died, but it's completely true. I am sending you hugs and love, Dawn x

Hi Sandi, you are totally right. I think if I had tried to stay in my old department, I'd be on the scrap heap by now. It's not just the way my manager was with me, it was the whole atmosphere of the place too. It's so different upstairs! We have what's called an 'availability rate' which is how long in the day you are available to accept calls. It should be above 85% each day, I usually come out at about 93% and so my new mananger has told me that if I'm having a particularly difficult few hours, I may go 'unavailable' for 5 minutes and go get some air. Shocking stuff after years of being used the other department!

I can relate to this too, unfortunately when you work full time pacing is not much of an option. I am extremely lucky in that my partner is more than willing to pick up the slack in the house where I fail. I'm sure I've mentioned more than once that he does the cooking, hoovering and the dusting as well as mowing the lawn (which is huge) and no doubt countless other things that I don't even know about. If I was alone or with someone who was not so thoughtful, I'd really be stuggling. I rarely visit friends, I really have to factor in the thought of chatting for a few hours in one block. I also experience the whole 'getting the fatigue a couple of days later' thing. This weekend, my ringing group actually had nets up and caught birds for the first time this year. For actual catching we start early on Saturday and it meant that I woke up at 04:45. I stayed til the end at 13:00, but had to skip the glass of coke at the pub afterwards so that i could come home and 'sell' my old car to a complete time waster who stayed for an hour, but didn't take the car which i also found very tiring. On Sunday, I had already booked a falconry experince which meant standing practically still for 2 hours. I am still fatigued now, this was way, way too much in one weekend. I cannot bear the thought of doing nothing with my week other than going to work and so I keep on pushing myself in my time off which only makes going to work harder. I try not to think about it too much as it gets me down. Andy is very helpful in his positive optimism. He points out that this is the pay-off for losing my fear of spiders and the dentist and gaining a love of peanuts and spicy food, which of course reminds me that not all the changes are bad. He's a good 'un that's for sure!

Hi Sandi, it's easier said than done, but try not to feel too despondent. Adding any working hours to the week is shockingly exhausting! When I first started back to work, they increased my hours by 4 every other week and it was very hard to cope with. There are so many other things that I am unable to do in addition to working and there are some days when I have to try very hard to remember why I thought working full-time was such an important goal. At least now I have some money to myself, I can buy petrol to get about (even if I haven't got the energy to use it to visit anybody!). My benefits would have ran out 2 months ago which was really worrying me so it's nice not to have that in the back of my mind. And I am glad to be able to take the pressure off Andy financially. So, when I think about it in terms of good things instead of how compleletly floored I feel, the overall impression has to be that it's better this way, even though I still think a lottery win would really be the best route I now work every third Saturday (which comes round really fast!) and I keep getting Tuesday as my rest day. This is too early in the week to be of any restful use as I then have a 10 day stretch where I work 9 days in that period and I've been getting more and more exhausted. Yesterday, I had a word with my team leader and he immediately changed my rest day to Wednesday of this week. Wow! One of the hardest things about my new role is adjusting to how understanding my manager is!

I have resurrected this thread rather than starting a new one on a similar topic. Has anyone noticed a bit of a regression in their memory capabilities? I am having some holes appearing and although it's very minor, it troubles me. On the whole, my memory has recovered fantastically. I only need to use my diary for appointments or plans. For the day to day stuff, I get along just fine. Recently I've noticed little things are slipping. For example, I'll be in the shower and when I shampoo my hair, I can tell by the large amount of instant foam that I have actually already washed my hair but have absolutley no recollection of doing it at all. The other day, I was going to a shop to use a voucher I'd received that I'd left on the bedside cabinet. I went to put the voucher in my purse but it had vanished. I searched everywhere and eventually it occurred to me to check my purse and there it was. Now, I could only have put it in there that morning but again - no recollection of that at all. Is this something to worry about do you think? Or is it simply a case that I'm using so much brain space up working full time that smaller things are suffering?

There was nothing particularly unusual for me either except I'd started having pins and needles in my arms a few months before hand. I went to the GP and was told that it might be my chair at work, or having my PC at the wrong height. I had become very intolerant to any type of stress. Andy says that the night before, he found me in the kitchen on the floor crying my eyes out because I'd checked the filter at the bottom of the washing machine and the water had gone all over the floor even though I'd put a towel down. I was crying hysterically because I couldn't work out how to mop it all up. I'd woken up early the day of the sah and so the lamp was on in the living room. About 20 minutes before my bleed, the lamp started flickering badly and we unplugged it because it's on a dimmer switch and we thought it might be a fire risk. To this day the lamp works absolutely fine. Apart from that, there was no real weirdness before hand.

That sounds like a very plausible theory. As far as I remember, it wasn't that I didn't recognise my face in the mirror, it was that my face looked weird - different somehow. But then again I did lose 16lbs in 18 days so no doubt my face genuinely did look quite different. For me, it was my flat that I did not recognise and it lasted for some time. There were solid walls where I remembered doors or windows being. I thought that the front door was made of solid wood and was confused by the top-to-toe glass. I would lie awake at night feeling like I was in a strange place. Andy tells me that our friend had popped in that morning to do some housework so that he could concentrate solely on getting me home. She'd put the vacuum away in the wrong place and Andy said that I sobbed and sobbed over it. I wonder if the recognition process might apply to any type of recognition then? Does brain injury change what we perceive even if it should be very familiar?

Hi Mat, I struggled with temper for a few months after sah. I've always had a lack of patience anyway, but I found the way everything was ten times harder than it used to be so deeply frustrating! Also irritating was the way my partner used to tell me things weren't so bad. They seemed awful to me! But then I had to remember that he thought I was going to die, so not being able to write or thread a needle must have seemed very small to him in comparison. That did all ease off after a while and I actually prefer my life the way it is now. I have come to accept the changes (they are not all bad) and I have so little temper these days that my partner often jokes that I've been body-snatched by aliens rather than suffering sah What I'm trying to say is that it does get better, honestly!

I very rarely dream since sah, but I wonder how much of this is a lack of dreaming and how much is a lack of memory? I have always been a night-owl and used to come to life at about 23:00, but these days I can't get past 21:00 without serious repercusssions the next day and now I'm always awake around 06:00. I only ever set an alwarm as a back-up, it's an extremely rare thing for me to need it these day. Gone are the days of a long lie-in at the weekend!

In my new role, I made the decision that only the staff who needed to know should be told about sah, so my team leader, team senior and department head know about it. I just wanted to get to know people first. I don't know about anyone else, but I have found that when the brain injury is mentioned, people speak to me like I'm a bit simple...they will talk s.l.o.w.l.y which drives me nuts. Anyway, a few weeks back, I was asked by HR if i would write 'my story' for the company newsletter (methinks they were after a bit of free PR...look what we did for Dawn...or am I just cynical?). I thought about this for a nano-second as it seemed a bit personal to spread out over the entire U.K section of the company. I'm beginning to wonder if this is the best course though as recently people keep telling me I look 'stressed'. I am not stressed but I am very tired, many days I don't know how I get through 4 hours let alone 8. Perhaps it would be better if I told people about sah so that they might understand why I look so rough? But then again, I have friends who were there for me throughout my hospital stay who now think that I'm fixed and that maybe it's time I 'moved on'.

I've heard that too Mary, it was mentioned on a programme about Dyslexia. For some people, the colour in the glasses stops the words from 'jumping about' which causes problems in concentrating when reading. Dawn x

Hi Wem, I find it hard to concentrate when online too. I have to take notes as I go along no matter what I'm looking at, even if I'm only shopping. I take a note of the website, the cost of the item ect. If I'm researching something, I have to break it down into small chunks. I find this takes the pressure off a little as if I take notes, I'm no longer trying to remember what I've read as well as concentrate. It has taken a lot of practise to get to this stage, to begin with I didn't spend much time at all on the internet because it was pointless. My ability to concentrate has increased dramatically since I went back to work. Most likely this is because there is no choice! This makes me think that practise must make a big difference. I even manage a tiny amount of multi-tasking these days. By multi-tasking I mean filling out a form for a customer who simply will not stop talking even though I've asked them to 'bear with me a moment'. It's a good job they're on the phone and can't see the expression on my face Dawn x

Hi David, since I learned about eating regularly through the day my spoon usage has generally improved. When I'm getting low on spoons, my brain literally 'nips'. It seems to actually be a physical sensation. If I'm talking to a customer who doesn't speak much english, this happens very quickly and so I'll push my microphone out of the way and munch on something quiet like a dried date while they are trying to explain to me what they need from me. In this way, I can get through 80 phone calls a day. I take a walk at luch time, I get 45 mins and don't chat to anyone or read. Although a bit anti-social, this replenishes me enough to get through the afternoon. If I'm struggling, I take a very strong soluble vitamin which gives me a boost. I don't have much energy for other things and am finding it hard to keep in touch with friends, especially those who prefer me to make all the effort all the time. I have mentioned before how supportive my partner is. He does all the hoovering, dusting and most of the cooking. I do the washing, ironing, change the beds and clean the bathroom. It works for us! When I decided I should make more effort to eat properly instead of eating ready meals, that gave me a very bad week. Andy was on lates, so the meals were my responsibility. I simply did not have the energy to stand in the kitchen and cook after work. I felt so exhausted that week that I started to get quite depressed. Night-time uses up a lot of spoons too. Like you, I get up often through the night and rarely feel rested when I wake up. Recently, I'm having problems sleeping past 05:30. This is not a good start to an 8 hour day! Sometimes it seems that the more tired I am, the poorer the quality of my sleep. I haven't really dreamt much since the sah, but this could be poor memory - perhaps I do dream but don't remember it? I wouldn't like to say ow many spoons I get through in a day, it's certainly not as many as it was a year ago even though I now work full-time. My stamina has certainly increased, but when I'm tired my tolerance goes through the floor and I become a moody moo Dawn x

Hi Daff, I understand what it's like to live in fear although for me, it's all happened the opposite way about. After my mum died of sah, I was terrified for almost 9 years that I might have one myself. Every stabbing pain in my head would send me into a panic and I was worried I'd die. Now that I know what sah actually feels like, all those 'pains' I had before seem laughable. For me, having had sah has actually taken a lot of fear away and it's such a relief to have it out of the way. That said, I do not have a shunt and I can't imagine what that must be like. You have come a long way, congratulations on organising a fund-raising event - that is an enormous achievement! Dawn x

Hi Wade, welcome to BTG! I'm glad you have found us, most of the things I now know about SAH have come from this site and having people here who understand how strange this can all feel at times is invaluable. I'm not sure how well I'd have coped without it. For example, you have discribed thet weird 'hot water' feeling in your head, it was such a relief to me to read that it was a normal sensation and it was also a relief when it stopped happening. It might be worth it to record some of how you are feeling. That way, as the months pass you will have your own record to look back on. I wish I had done that myself, but to begin with I had difficulty in writing and even now, 19 months on my handwriting is completely unrecognisable and it takes much more effort than it used to to write. I had 54 weeks off work and started back on a very gradual phased return, beginning on 8 hours per week. I was lucky enough to have accumulated so much holiday (if 'lucky' is the right word!) that a long phased return could be planned. I started full-time hours at the beginning of December last year and had to change roles in order to do that as my original job involved far too much multi-tasking - an ability that is very challenging after a bleed. If I am over-doing things, my brain soon lets me know. I get a high pitched whine in my head and if I keep going, a metallic taste in my mouth and I've learned at that point to STOP. Try to view your week as one single unit of time, don't arrange lots of things on consecutive days if you can help it. Space things out and give your brain time to recover in between events. I wish you all the best, Dawn x

David, I'm wondering if you feel like you wasted a day because when you are at work full time there is so little energy, time or inclination to get the rest of your life done, so if you've slept a day away it seems like a waste even though you clearly needed it? I don't know about you but I'm finding that since starting full-time hours there is no energy for visiting; going out; doing housework. So well done for getting out to a poker game! And as for cooking, I'm with you there. Andy has been doing most of the cooking since I went full time. When he is on lates, I usually have pre-packaged meals. As part of the drive to eat better, I have given ready meals up and this week I feel like I've done nothing but work and cook and tidy up the kitchen. Maybe I will return to the world of pre-packaged curry after all! As for working full-time, there must be some other way to make money. Couldn't we all get together and come up with an sah-friendly corporation? We could all work from home with as many rest breaks as we like, on flexi-time so that if you finally have a night where sleep is not elusive, you can stay in bed and make the most of it. Perhaps we should club together and have a massive lottery syndicate?

Hi David, this is encouraging news! I hadn't heard about a limit to lifting in particular, but my GP did tell me I should stop attending the gym for the immediate future. This might have been a fatigue issue, or a balance issue? I've asked Andy the reason but he can't remember the reason either. Dawn x

I was dreading going to work today as you know, but all day I felt great! It's the best I've felt in a week. I even took 82 calls so I'm only 6 away from my daily target. I can't understand the change. The only difference I can think of is that I was sitting all day long whereas when I was on holiday, I was physically working on chopping the hedge down. Maybe I felt so rough because I was actually doing things and it's a different form of fatigue? Perhaps I have become somewhat accustomed to mental fatigue and so the physical fatigue hit me badly? On the drive home, I felt cheerful and that's not at all how I was feeling while I was off. I had a slight headache after dinner, but that was solved with paracetamol. I don't understand what's going on, but I am so grateful that today wasn't the nightmare I was expecting. Thanks for all your thoughts and comments, it's invaluable to be able to chat to people who understand sah and it's ups and downs!

I have just had this week off work. My only plans were to get the hedge tidied up (it's about 100 ft long) and see a couple of friends. I honestly thought that if I took a whole week of work out of the equation, I'd be able to do roughly as I pleased each day. It really has not turned out that way at all. I have not completed the hedge and I saw only two friends for some shopping and lunch. I even cancelled the plans I had for saturday morning and afternoon because I realised I just couldn't do it all. There are so many people I didn't get to catch up with at all. I feel absolutely exhausted and I am really dreading going back to work tomorrow because if this is how tired I feel doing the things I want to do, how am I going to get through full-time hours again? I thought that a week off would be just the ticket, but I actually feel worse now than I did before Perhaps I have not learned how to manage my fatigue after all, but as I said earlier, I thought taking work out of the week meant I'd be fine. I have been back at work for 6 months now, 3 of those have been full time. Since then, this is the first time I have felt this way and I am disappointed and fed up. I am trying not to be moody and miserable, but I feel quite grumpy. I suppose it doesn't help that we have had 5 weeks of relentless car issues and this week, it's been Andy's car that is the problem. It means that any money earned is going straight out again and there's very little left for fun. I am sorry for moaning, but I wanted to talk about it with people who know what sah feels like and how frustrating it can be. Andy is very supportive, but he sees that I nearly died and so not having the energy to get the garden tidy isn't something to get stressed about, the garden can wait. I know he is right, but I'm feeling very frustrated right now. Dawn x