DawnS

I'm going to see if I can get an appointment with the GP tomorrow. I'll tell her that if I go back to work now, it will be a reaction rather than a decision and see what she says. If she was to sign me off for two more weeks but with notes attached for a phased return immediately after, maybe this would pacify work, my partner and myself all at the same time. I feel like I'm being very boring with this subject, going round and round. A friend suggested I speak to the job centre and find out if there is some kind of support that I could be tapping into and have missed. I'd like to stick my head in the sand and hope it all goes away somehow! Daff, is it better speaking to a councillor face to face? I too had some phone counselling soon after sah and it did help. I wonder if maybe I need to go and talk to some one properly.

Thank you so much for your replies, it helps no end to know that I'm 'talking' to people who have been through this. This afternoon, I've felt extremely dizzy though it's not something I usually suffer with. I've had a nap which has helped a little but then my manager phoned me to see how I'm getting on and to say that she is really looking forward to my return to work. That's nice I suppose, but now I feel more pressured to go back asap. I have not seen a Neuro since I left hospital, there is no-one other than a GP to talk to. At the beginning of this sick period, I had an overnight stay in hospital and they were supposed to send me a Neuro outpatient appointment. As I have heard nothing I meant to chase this with the GP but the last time I had an appointment, I completely forgot. Perhaps if I get some more time off, it will push work to send me to Occupational Health. But then again, the last time I went to OH, they had no-one who specialises in Neuro. I feel that it's a bit like seeing a hairdresser to fix your toothache! I think deep down I know what I need to do, but if I stop work I'll have to give up my car and my bird ringing. I love my car and I love my hobby even more. Surely life can't just be about working, can it? I'm not sure what other job I could do, but I guess I'll have to find out. Maybe simply reducing my hours again in my current role will be enough. I don't usually feel frustrated about the changes since sah - it's happened, what can you do - but I am feeling somewhat disgruntled recently. My apologies, I must sound like a moaning Minnie but let me thank you always for your support x

In the very early days, getting stuck so badly that I was literally physically unable to move was a regular thing, daily at least. This faded over time (I'm 2 months short of the 3 year mark) but is back with a vengeance this week. I am currently off sick with fatigue - this is my 9th week and I'm due to return next weds. Today, I have been barely able to move. I can't think. There are things that I need to get done but I have no idea where to start. After a while, I realised I needed to apply the methods used in the early days...break it all down into tiny chunks. After emptying the dishwasher, I decided the ironing should get done. I told myself that getting the ironing board set up is all I have to do for now. I went to the cupboard but the ironing board wasn't there. I found it in the living room, set up and the iron already on. I have no recollection of doing this! A thread was loose on a t-shirt, I went to the kitchen for scissors. There was an apple on the side that I'd left for the birds, I cut it up and put it outside. Then realised I hadn't watered the greenhouse this morning. after watering it I came back in to find the ironing board sitting with a t-shirt that still needed a thread cutting off. I am driving myself insane I can only imagine that I am thinking about my imminent return work so much that anything else is essentially multi-tasking and I can't do it. My partner wants me to take more time off. It's true that if I go back next week it would only be a reaction to the fact that they were not happy with the length of my last sick note. One moment I am concerned that I will lose my job, the next moment, I couldn't care less. My GP thinks I need to change my role but that I am perfectly capable of working. I don't know what to do - go back next week or ask for more time off. HR were supposed to write to me 5 weeks ago but I've heard nothing. I don't know what to do and I hope it's ok but I decided I'd like to hear from people who understand, so here I am x

Oh wow, this is so well written. I like the part that mentions others turning the subject to sah all the time. In the early days, I was desperate to stop repeating the same story and to hear someone else's news, but it was as though no-one thought they should talk about themselves. Even now, if someone is describing how ill they've been, they'll often add the words 'obviously it's nothing like what you have been through' as if I've won some competition that I'm not aware of and they're afraid to steal my crown.

It's very interesting to read how similar our stories are. I never feel refreshed and don't sleep well. It changes regularly for me, but the latest manifestation of poor sleep is waking very early. Yesterday, it was 04:20 and I didn't manage to get back into bed until 23:00 which meant that today I had a lie-in all the way until 06:00 I am up twice each night to use the loo and no matter what adjustments I make to my fluid intake, this remains the same and it can take a long time to get back to sleep. I wake up exhausted and like a few have already said, it takes me a couple of hours to feel remotely human. My partner will often ask me why I've woken up moody. I am not in a mood - I am shattered. He has always been very supportive but can't seem to get the hang of this one and by the time he asks me a third time what's wrong, I am in a mood and he then feels justified grrrr! It seems that the more exhausted I am, the harder it is for me to sleep.

I don't feel that I am being bullied and I haven't had the meeting yet so I'll see what they have to say first of all. I just thought it was a wise use of my time to get prepared, especially as I have more idea what may be coming after the first time this went on. The circumstances have changed a lot since then down to having a very different (human one might say!) manager. As an employer, they have actually been very good to us - my partner and I work for the same firm. When I fell ill, he was 5 weeks short of 3 years service. This is the point where you are entitled to full sick pay. Technically speaking, he was only entitled to 6 weeks, but they waived this and paid him in full for the 10 weeks he was absent. They allowed him to carry his mobile phone on returning to work and was allowed to leave suddenly if required without any kind of issue. I feel that they have been very understanding. CAB advised me that capability is very different to unfair dismissal because it means that I am not capable of fulfilling my end of our contract. Seen in this light, it reads much better. I cannot work full-time, we've tackled this already. I cannot meet the targets set and this will be tackled in my meeting of next week. If my hourly work targets cannot be lowered, I will ask if there is a less demanding role that I could take. Perhaps reducing my hours even further would be the correct solution. If none of this is workable then I guess it's time to look for another job! Thanks to everyone for your words of encouragement and support. Being able to discuss these things with people who genuinely understand is absolutely invaluable!

Thanks Daff, that's lovely. You always explain things so clearly, thank you. Penny, I have spoken to Acas and they said that they cannot advise specifically as it depends a little on my employers procedures and a lot on my individual circumstances, though they said they can help if I am dismissed and feel that this has been done unfairly. This was quite similar to what CAB said when I went to them this morning. They gave me some web addresses and printed off some info about the disability discrimination act. I find it difficult these days to research things like this because I can't think of what I'm looking for or where to start. If I'm pushed in the right direction then I can get going. I also asked about benefits if I am dismissed for capability, but it seems that would change nothing. Andy works, therefore we wouldn't get any long term help. They did tell me that my own GP would need to be of the opinion that I cannot work. My GP feels that I am more than capable of work, just not in my current role. I guess I need to be writing a new CV then!

I have a 'wellness' meeting next weds with my team leader and HR as I'm currently off sick with the dreaded fatigue. I'm just starting my 4th week off and the company I work for consider this to be long-term sick, hence the meeting. I am split somewhere between feeling strangely unemotional / unconcerned about this and feeling that a big change is about to occur. I'd like to use my time off wisely in a fact-finding way. I am going to the drop in session at the Citizens Advise Bureau tomorrow to inquire about benefits if I am eventually dismissed for capability. This is a strong possibility as 2 of the warehouse staff have been dismissed for capability recently and it seems as though it's a current trend. The other thing I'd like to find out is how much can be expected from 'reasonable adjustments'. I have already changed roles and cut my hours down to 31.5 per week. Perhaps this would be their responsibility already fulfilled? Does anyone know anything about this? I've searched the internet but it seems that this is down to the company's discretion and is open to interpretation. Any ideas, input or advice would be most gratefully received xxx

I'm a bit late but - Happy Anni versary Tony! The two year mark seems to be an important turning point. It's a place where we can understand more about what's happened, to realise what's changed, perhaps come to terms with the losses and gains and re-evaluate a little. This part of your post struck a chord with me: 'I have learned that it is ok to take life at a slower pace and not feel that every spare moment needs to be filled with doing something productive'. Your post was very timely for me as I have a tendency to feel that if I'm awake, I should be doing something. It is always good to hear about others' experiences x

Hi Win, as everyone else has said, the CT is the doughnut machine so it's not loud and it's not claustrophobic, phew! I hope all goes well xxx

Your brain now has to work very hard to do even basic things. When I first went back to work, I did 4 hours twice a week. I though this would be simple, but it was really hard. I was floored by it. By then, I had been driving for about 3 months and adding a 25 mile round trip seemed to double the day. They increased my hours every other week and when I changed my role, they bumped me from 20 hours to 40 over the space of a weekend. I now know that this was all way too much, oh to be able to go back and do it all again armed with the knowledge we now have! Did you go back to your GP? What you have described (the ringing and dizziness) sounds very much like your brain's telling you to slow down, but as we are all so different, it's always best to get checked out.

What a lovely post Kris, thanks. You make a very valid point there about other conditions being taken more seriously. I have a friend who is on full disability due to CFS. I am glad for her that she does not have to work, as sometimes she is so ill she has to use a wheelchair. But I often wonder where is the dividing line? I can walk about fine usually, though at the moment I often look like I'm drunk and can trip over a perfectly flat surface My brain is not fine and so like all of us, I look ok...therefore I must actually be ok. Is that seriously as far as anyone will officially look? Why is there no kind of mid-line help for people who can work to a certain extent, but can't be pushed to the limits? I'm feeling a little angry about this at the moment. Since sah, I've had to change my role to an exhausting one with more work but less money (in order to get a more compassionate manager) and then I also had to reduce my hours. I've lost over £4k per year through no fault of my own. I realise it's not all about money, but your bills don't go away just because you are not fully fit. I've to go back to the GP on Tuesday and I'm really hoping I get signed off again but as I've mentioned before, this will put me under the long-term sick rules and will mean meetings with HR. I'm trying not to be concerned about this too much as clearly something needs to change, but what if I lose my job entirely...?

It can be very difficult to cope with other people's responses. To begin with, it drove me nuts - people telling me that they have memory problems or feel tired too. On my nicer days, I think that others were just trying to help but in a very clumsy way. I'm 3 months away from the 3 year mark now and it does get better. Over time, the comments stop anyway and you will feel stronger and more able to cope. As for feeling like you 'should' appreciate still being here, that comes with time. It takes a while to get used to the differences in yourself - your abilities and energy levels are likely to have changed. Perhaps even some aspects of your personality or likes and dislikes. In the early days, I felt like I'd been body-snatched. I looked like me, but I didn't feel like me. I hope you feel better today x

Hi Iola, this makes perfect sense to me. I feel a similar way most of the time. If I keep going, I'm alright but if I stop then I feel it. My partner is always telling me I do too much but I can't see it. We have this discussion often where he asks me to stop doing so much but how can I when I don't think I'm doing a lot? Most of the time, I've worked on the idea that is I'm going to feel fatigued anyway, then I may as well get lots done first. Then a fortnight ago, I crashed. I'm just going into my third week off sick and I still feel terrible. There are days when my arms feel like lead. Other days, I can move but I can't talk. I thought I had suffered with fatigue since sah, but this is a whole new level of awful! It seems that it catches up over time, for me anyway. The other thing about doing, doing, doing is that other people come to expect a certain level of ability from us and so are as unprepared for a crash as we are. I think we are so determined to be ok, to show everyone else that we are ok that we actually do ourselves down in the long term. I wonder if it's a form of denial?

I'm glad to hear that it's nothing serious. I get the shakes if I've overdone things, but by shakes I mean that i feel trembly and weak. This is especially the case if I need to eat. I have found since sah that I can't let myself get too hungry, and certainly cannot skip meals or I pay in a very disproportionate way!

No, I won't be rushing back if I can help it. Todays doctor seems to think it's work that has caused this. Not working itself, but rather the role that I do. I've found that many people are under the impression that working in a call centre is something you do when you are too thick to have a 'real' job, but actually it's very stressful having people moan at you all day long. This of course raises some questions about what I should do as a long term solution. If I am off for over 4 weeks, this will be considered long-term sick. Could they then begin proceedings to dismiss me on ground of capability? It's not feasible to go off for a few weeks sick a couple of times per year. We can't actually get by on my partner's wages alone...not if we both want to eat as well as pay the bills. Likely, I'll need to search for a new job but after this, I'll be have a poor sick record and who would take me on? Or maybe, I should stop worrying about things that haven't even happened yet and get over the fatigue that's happening right now?

I've been back to the gp this morning. I didn't see Dr Graham as she wasn't working but I saw another female doctor who is very new. She signed me off for 2 more weeks and wants to see me again when that runs out. It was so nice to be taken seriously!

Thanks everyone, some good ideas there as usual! I'm going to try to get an appointment on tuesday with Dr Graham. She's not my usual doctor but is very empathetic. The problem is that as a result, her appointments fill quickly. You have to phone in on the morning that you want to get in and just hope that you suceed, so we'll see! We visited Andy's parents yesterday and as soon as I walked in, his mother said 'well, you look alright to me'. And isn't the just the cusp of the problem - we all look fine so therefore we must be ok?

I've been hit by fatigue very badly this week. I thought it started on Monday, though my partner thinks it was a few days earlier. I work a full day on a Monday and I have no idea how I got through to 17:30. I couldn't think and by the end of the shift could barely speak properly. My employer doesn't accept a self-certificate in the week up to or including a bank holiday, so I went to work on Tuesday as normal. Within an hour, I was stuttering and couldn't think again so I went home. I went to my GP in the afternoon who was shocked to see such a change in me and phoned the hospital. They advised he send me to A&E for a CT. The scan was clear but they felt that the symptoms might be caused by a minor bleed not seen on the scan and kept me overnight to do a lumbar puncture the following morning. The acute admissions ward is awful and to be honest, if your weren't too bad to begin with, you'll be half-dead by the time you leave as it's virtually impossible to sleep. The consultant came to see me at 00:15 and was doing all kinds of motor tests and asking lots of questions. At the best of times, I find it hard to answer questions and I give very basic answers because I can't think. When I'm fatigued, there's no chance! Anyway, the upshot is that when they asked if these symptoms are normal for me, I've said yes. They are, but only when I'm wiped out. I'm not sure if I made that clear. When they asked me why I'd gone to the GP, I said it was because I need a sick note. Which is true, but not the whole story. Finally the following afternoon, they decided a lumbar puncture was not required and I was given beta blockers for the headaches and sent home. This is good as presumably they feel it's nothing serious. But now I feel as though I have trivialised how I feel by not responding well to the questions asked. I still feel very unwell and am struggling to talk properly, I'm exhausted! And in typical fashion, the more tired I am, the less sleep I am managing to get. I feel like I have cried wolf and now will not be taken seriously if I return to my GP to discuss how bad I feel.

well done Daff, hope you had a fabulous time x

Gatherings of any size are exhausting. Parties have so many aspects to them...lights, noise, movement, conversation, noise. Did I mention noise?? What used to be fun is now at least two days worth of headaches and maybe a week or more of fatigue. Well done for going at all! Perhaps even though it wasn't the best of nights, it is actually a sign of progress...could you have managed it at all three years ago? Two? Although it's not nice to let other people see you feeling so floored, it may be good for them to be reminded that although you have improved, the effects of sah are long lasting and don't simply vanish. Sometimes I wonder if we do ourselves down by being so determined to be 'ok' because then people are surprised when we are not. So, people saw you staggering because attending a party caused you to be neurologically exhausted as a result of surviving a major trauma to the brain. I'm sure that plenty of people left that party staggering because they had chosen to get plastered. Why is that less embarrassing? I hope the fatigue is lifting and that you feel better x

Apparently I was quite hysterical when I got to a&e so they gave me morphine. As a result, I had no reflexes so when the doctor came to me he diagnosed a seizure. My partner kept insisting that I don't have seizures and that my Mum had died from sah and he thought I may be having a brain haemorrhage. It was 4 hours later that they decided to send me for a scan as a seizure should have passed by then. Of course, they found a bleed like my partner had been telling them for hours. Looking back on it, it was early Sunday morning and no doubt they get a lot of hysterical people still drunk from the night before perhaps. It's not an excuse really, but they came good for me in the end and here I am which is 100% more than I can say for my Mum.

I don't experience actual leakage, but since sah I've had what is termed as overactive bladder. I need the loo almost constantly which is a nuisance at work, not least because my desk is as far away from the loo as it is possible to get. It makes long car journeys a source of anxiety as I often can't make it through a complete hour without going to the loo. There are a couple of reasons for my issue, the first being that the catheter was left in for the majority of my stay in hospital weakening my bladder control. As the nurses found my urine output to be excessive, they ran some tests and found that I have diabetes insipidus which means my kidneys don't hold water well. Add to all that the fact that after sah we have to drink 2 or 3 litres of water per day and the loo was a prominent feature in my life and still is now. In addition immediately after sah, multi-tasking is impossible and needing the loo at the same time as trying to do anything else was essentially multi-tasking and couldn't be ignored. I was advised that 'just in case' trips to the loo are counter-productive because it means your bladder becomes used to being emptied more often than necessary and as a result is not able to hold much urine. As everyone else has mentioned, it's best to front out the embarrassment and mention it to your GP to rule out any underlying issues.

I had a chat with my team leader this morning - she was most reassuring. She advised that there are people in our team who are performing below my levels and without brain injury. She thinks some one-on-one training is a good idea however, a troop of new starters come in tomorrow so the trainers may be tied up with them for a little while. She came good on her promise of reducing the number of lines I work on, so have spent the day merely booking appointments for engineers. This is definitely the way forward. I came home this afternoon and went straight to bed for a nap, which I never do on a week day. Hopefully now I can relax a little and will start sleeping better at night

Thanks everyone, sound advice as always. Since i changed my hours, I've kept an archive folder for all the emails we are sent with a copy of our personal statistics. I had been in the red only 7 times in 5 weeks after changing my hours but now with the new system, I'm in the red 5 days per week. My team leader comes in an hour after me today. I'll see if we can have a chat privately so that we are not disturbed. Any team leader on the call centre floor is considered fair game to offer help to everybody and this makes staying on track challenging as there will often be a queue of colleagues waiting at her desk. I feel a little less panicked now, thanks!