DawnS

Hi David, Sorry to hear that you are shattered this week. I have the same holiday off as you do because it's my birthday Andy and I had planned to go down to Brighton for 3 mights but as I've been put on part-time hours, that won't be financially possible now (sulk). I had a meeting with HR and my manager on Monday 29th October to discuss possibilities. HR suggested that perhaps I could spend a half-day up in the call center to see how it would make me feel because I was concerned about the noise levels. It would seem that there is more than one office up there, one is noisy and one is quiet. Happily, there were 2 vacancies in the quiet one. I was asked to stay on part-time hours for a fortnight while they try to sort something out. Well, as it will be a fortnight on Monday, I asked my manager yesterday what happened to me going up to the call center. She looked at me a bit blankly and said 'oh, that was back when there were jobs going, but they've gone now'. Brilliant. Now I am worried because ACAS have told me that my employer is under no obligation to create a role for me. There actually is no part-time role, they are simply finding me 4 hours of work each day. I am beginning to think I made a serious mistake in telling them I wasn't coping. Thinking about it, I'm not so sure it's the role I wasn't coping with or the constant negativity. Maybe if they had followed the guidlines sent out by occupational health (somewhere quiet to work) then I might have been fine. I would really like to be able to think about something else for a while but my brain will not leave this subject alone, it's like a stuck record in my head! Does anybody else get that with their concerns? Dawn x

Hiya Teechur, I hadn't noticed a link to the weather, but I'm going to keep an eye on that now. My headaches have also increased dramatically, but I've just been putting that down to being at work and hadn't really thought to look for another reason! Dawn x

Hi Mary, I am not surprised you get fed up, you have more than most to deal with. Sah alone is bad enough I think without fybro and a tumour to deal with on top. I think it's amazing how much you do. These might not be the things that are on the top of your 'to do' list, but you accomplish so much! I am often amazed at your resilience and you are generally very optimistic and cheerful so don't feel bad for having a good old vent. There's been many a day when you have helped me to feel much better! How long have you felt like this? I am wondering out loud here, but could it be connected to coming off the ritalin at all? I hope you feel much better very soon, sending hugs, Dawn x

David, you have seriously hit the nail on the head there! I always used to feel like I was having an unusual recovery compared to what I read on BTG. Sure, I got tired quickly and would develop a 'wall' in my head and then need to rest, but I didn't have very many headaches, could plow through the physical fatigue (not the mental fatigue though!) without naps through the day etc. Then, I went back to work. Wow. Ouch. I feel really awful now. I am exhausted, moody and have had a headache for 3 day straight so far this week. Oh, that's every day then I am not sleeping even though for the first 2 months of my return to work I slept very well. My intolerance of noise has gone through the roof and I am suffering with anxiety bad enough to upset my stomach. I am seriously beginning to wish I hadn't tried to go back. I have asked HR and my manager if there is a possibility of a less responsible role. I am an administrator and have never considered it to be a particulartly responsible position, but my manager pointed out to me last week that I am personally responsible for 50% of the warehouse's work load. It's too much and I am not coping well. They have told me that it might take 2 weeks for a solution to present itself because the decision needs to go higher up the food-chain. In the meantime, they have put me onto part-time hours and I scan pieces of paper for 4 hours a day and this is too far in the opposite direction, I am bored! It's the not-knowing what's going to happen that is causing my anxiety and sleepless nights. You are right that work is a 4-letter word and I am impressed with your resilience and stamina that you are still ploughing on ahead! Dawn x

I'm glad that you have found BTG so early on. This site has been an absolute saviour for me. This is where I learned almost everything I know about sah and the relief of being able to 'talk' to other people who understand is huge! I had my sah 14 months ago and the changes I have seen in myself since are immense. In fact I still see changes happening. In my experince, it's very difficult in the early days to come to terms with what's happened and the changes it has brought. Try to measure your progress against how you were when you got out of hospital rather than how you were before the sah. It's easier said than done for sure, but puts a much more positive spin on any progress. As for dizziness, I rarely suffer from it these days though I did in the beginning. If I get dizzy now, it means I've been doing too much. Unfortunately I didn't keep a diary for myself and as a result some of my symptoms disappeared without me noticing. I wish I had kept notes, but I couldn't write for months. It would have been nice to have something concrete to look back on as I have to rely on my partner's memory of the early days. I wish you the best of luck! Dawn x

Today I have had a very good chat with HR and my manager about my return to work. I have just been completely open and honest and explained that I feel it's all gone south and I am worried for my job. They have explained to me very nicely that they appreciate just how far I have come in 14 months and that they have no urge to see me fail. It has been suggested that I might consider other options like taking on a role with less responsibility. I was then allowed to go home straight after the meeting (2 hours early) to discuss this with my partner because he is on lates this week and I won't see him until saturday. I cannot describe how much happier I feel! It's like a weight has been lifted from my shoulders There was absolutely no point at all in insisting that I'm doing ok. I also came to understand during the meeting precisely why I've been thinking I'm doing really well and they don't. It's simply because I know how little my brain used to work and so I can see improvements every day. I have even been multi-tasking! I described my multi-tasking ability in the meeting and it was met with somewhat less enthusiasm than it was offered. And it came to me then, to me these improvements are huge but when your brain works fine you absolutely cannot comprehend what it is like to have a brain that doesn't work properly. It seems so obvious to me now. I want to thank you all for the input and advice you have offered me. You helped me to find persective and the courage to admit I am not ok. I am not sure where all this is going to lead, but it's just such a relief to have it all out in the open! Many thanks, Dawn x

Hiya Donna, I used to cry at adverts, Eastenders, nature programmes where something small gets eaten by something big and that has all stopped. I kind of like that it has stopped if I was honest, but like Cath, I don't get excited about anything either. The tears will possibly come at another time, maybe you are simply not ready yet. Dawn x

Today has been a much better day for two reasons; my manager was out all morning in a meeting and; I have stopped worrying so much thanks to all the help and support I have received here. Also, because my manager wasn't in, I wasn't having to watch my facial expressions. I have a naturally sulky looking face and so I have to put a half-smile on just to look normal and I admit it, I get face-ache! I still make lots of effort with my work and will continue to do so until this comes to a head. Today I've been thinking about what I'll do if this all goes south. I only have 6 months of benefits left and this is the main thing that worries me about losing my job. It occurred to me today that I should perhaps get hold of my old social worker next week and see if there is any support he can offer. I should have been visiting a friend after work but she texted me to say she is feeling too ill to see me today. She has cancer of the femur, pelvis, spine and heart and has been told that although she won't die immediately she certainly doesn't have 5 years left. It's only been 4 years since she had a breast removed and her children are 7 and 11. Compared to her, I have no worries at all.

You are all really helping me to put this into perspective. Lynne, what you said is spot on and you have made me think about what I really want and I had to laugh - what perks? My work is just a job, it pays the bills. It is not a career, I am not in a position that will go anywhere and it isn't life-enhancing. So, what am I fighting for exactly? When I finally got to sleep it was well after 02:00 this morning and that kind of thing's not going to do me any good at all. I still mananged to do my 4 hours at work and I even got a little bit of gardening done afterwards so my whole day wasn't just about work. There's only 4 more hours to go and the weekend will be here! At least these days I know when it's the weekend and it means something to me now. That's a nice thing!

Jus, many many thanks for my very first genuine smile of the day! Michelle, that's shocking! I would have been so mad about that to the point where I'd still be mad now! My Headway funding has been closed although the OT lady did tell me that I could contact her if I needed anything further. Thank you everybody, it's really good to talk to people who have compassion and understanding. You have made me feel less sad and pointless, perhaps I'll be able to sleep now. I really ought to go back to bed and try again. After all, staying up fretting isn't going to make my half day or my attention to detail any better tomorrow!

Thank you all for taking the time to reply. I did begin taking notes of conversations, jobs that I'd had to hand over etc, but to be honest it means I'm spending a lot of time note-taking and this has not gone unnoticed. I am amazed that anyone else is getting any work done with all the noticing that's going on! Michelle, you have made a very good point there and I am pondering that perhaps I'm not doing as well as I think. If that is the case, I will take that on board certainly. But shouldn't someone be telling me this? As for advocates, it's not that kind of work-place. Everyone keeps themselves to themselves really. I saw OH last week and he seemed to be expecting me to be very negative. I wasn't; I explained that being at work has provided me with lots of opportunity to multi-task and develop my memory which is very true. The OH Dr kept telling me that he could see how supportive my employer is being, so I think had I been negative it would have fell on deaf ears and made things worse in the long term. I'm not saying that the company are not supportive - they extended my phased return to 13 weeks from 9 and I really appreciate that. My PC was changed after it was realised that learning 3 things at once was too much and in fact it's my manager who took on the rubbish PC. They have also allowed me to split my break into 2 x 15 minutes over the course of 8 hours which is unprecedented as far as I know. The reviews are actually on a weekly basis and I did in fact ask for that. But they are a one-way street, I say how I think I'm getting on and I try very hard to be positive but I get no feedback. When I ask how they think I'm getting on, I'm told it's about me and what I think. To be frank, I'm shattered and I haven't the energy to take them on. It's obviously been forgotten that I nearly died (as we all nearly did) and I was surprised to find out from my partner today that HR and my manager visited me within a couple of weeks of me getting home from hospital so they did in fact see me when I was really ill and had no idea what was going on around me. It's like my spectacular recovery is working against me and I feel very disheartened. What is the point in trying so hard when this is all you get for it?

I am sorry I've not been online much recently, I've been concentrating on my return to work which I am finding increasingly difficult. Today I worked my second 8 hour shift of the week. I've been feeling very happy with my own progress but I feel like I am being put down at every available opportunity. Last week I did my first 8 hour shift and not once did my manager ask me how I was getting on. We had a meeting later in that week where my manager indicated that she had seen me 'looking flustered' one day and another time she saw me 'looking angry' and also, she has seen me taking paracetamol. I explained to her that if I have several jobs on my desk, it can be overwhelming and I need to take a moment to work out which needs to be done first, explaining the 'flustered' moment. I then told her that before I'd sent an email, I'd checked with my colleague because I couldn't think of how to indicate that the truck booking I'd made was at half past midnight, I'd written 12:30 p.m on the email. My colleague told me that was fine and so I sent the email. When I came back from my break, I was told that I'd informed the haulier of the wrong booking time and that 12:30 p.m actually meant lunch time. I was immediately irritated and told my colleagues I was having none of that because I'd checked before sending but my manager said that my colleagues are not here to babysit me but if I want to be treated like a child, that can be arranged. Each day I am told of the mistakes I made in the previous day which to be fair are few and are of a nature that cannot be proven either way. It's very much my word against theirs and everyone knows I have short-term memory issues which I feel is being exploited. In our review meetings, my manager asks me how I think my return is going. I start my reply with 'I think...' and she buts in and tells me not to be so defensive. I have not mentioned the half of it, but I fear I'm going on a bit. I might add, one of my colleagues has admitted that she wanted my job if I didn't return and she is one of my trainers. I feel like instead of concentrating on my job, I am triple checking my work (which wouldn't be a bad thing except that now I'm told I'm too slow) and trying to watch my facial expressions. I make sure if I need paracetamol, I take them on my break. It's like I'm turning into a paranoid person and I really didn't want this. I feel like I should give up trying to go back to work, but surely that would mean they've won? Sorry if it sounds like I'm whining but I could really do with some advice. I am too physically capable to be able to return to benefits but I think this is all affecting my health. Dawn x

Hi Michelle, I have just found this thread as I've not been on BTG much since I went back to work. I'm sorry to hear that the good times didn't last long but like Kris says, surely this is a sign of potential? I have never ever been able to nap since my sah. Besides the fact that my brain just would not let me go to sleep, if I did manage to nod off then I was sure to be up practically all night. This was driving me insane and I decided that it wasn't worth the hour and a half I might manage in the afternoon. Like you, I keep doing, doing, doing. I have a huge fear of being bored. And I get bored so easily I can be bored while I am busy! Since I started back at work, to keep going on and on just isn't possible. I am experiencing fatigue like the very early days and as a result I've started doing things like watching a movie in the afternoon because at least that way I am occupied and I am forced to sit still for 2 hours. It's basic but it works! I hope the good times come back and get more regular for you! Dawn x

Hi Vanessa, I had terrible sleep problems for an entire year. I would regularly manage to nod off at 02:00 if i was vey lucky, but more commonly around 04:00 out of sheer exhaustion. This isn't going to help you much I'm afraid, but this all stopped as soon as I went back to work. I have found out a couple of things though... I rarely stay up beyond 20:30 and if I do, I'm in for one of the old nights of laying there for hours getting to know my ceiling very well. I have taught myself to appreciate that if I'm lying there in the dark, in the quiet then I'm giving my brain a good rest even though I'm not asleep. This new spin on being awake really seems to have helped and I nod off within about an hour and a half usually. Dawn x

Hi Ceekay, welcome to BTG! As you've already seen, it's a brilliant site full of information. I can guarantee you'll learn more about sah from this site than any other source! The complete lack of aftercare seems to be rather a consistent theme unfortunately. Is there a Headway in your local area that you could make use of? I found it very helpful to meet people who have suffered brain injury though I have to admit, I'd love to meet another person who has had sah! I wish you all the best and look forward to chatting to you more, Dawn x

Hi Stephanie, I do remember that my partner followed me just about everywhere for weeks. It was really hard for him to go back to work and leave me for a full 8 hours. He tells me that he wasn't actually worried about me having another bleed or dying but he says that I didn't know what I was doing and was very clumsy so I hurt myself often. As with all things, your family's reaction will get better with time. My step-daughter was really scared when I first had the sah but she's 18 and what happened to me a year ago really doesn't factor in her life anymore I used to feel really bad for the impact all this had on my partner - having to pay all the bills and food by himself while I 'helped out' with my ESA. But my partner's dad said to me (quite sharply) one day that I was being stupid, I didn't plan it and Andy is ok just I should just use all my energy up on getting better instead of worrying about my partner. It was harsh, but fair! I wish you all the best, Dawn x

Mary, I am so happy that your new medication is working for you! It must feel really nice to be able to complete tasks and get a better quality of life. You always amaze me with your upbeat and positive attitude to all the issues you have going on in addition to sah and you truly deserve a break from it all. May the good feelings and clarity long continue! Dawn x

Many thanks for the replies, you always make me feel so much better. I've been to work this morning and had a decent day. I got home to find an appointment from OH for the 9th Oct. It's been booked with the same Dr who said I could go back to work. He seemed to be impressed with how well I've recovered and I'm hoping he might be sympathetic with the earplug issue. Michelle, that's a nice idea that she was joking but she wasn't I'm afraid. She went on to say that she wouldn't set me up for a fall cos she's not like that I'd have been less worried about that if she'd never brought it up in the first place! Daff, you have made some really good points there thanks. I didn't realise that about disabilities that are only apparent in the workplace. I do wear earplugs for all kinds of things, cinema, shopping, sleeping but it's good to be armed with as much information as possible. It's just a shame that I'm having to waste so much energy on covering my back. I could be puting that energy into work and getting along faster or better. Still, here's what I've been holding onto - tomorrow is payday WOO! HOO!

David, well done on getting to the 40 hour mark! I had a meeting with my manager and HR last week. They have told me that I'm not to deviate from my training matrix whatsoever. This is difficult because I'm on the email inbox at the moment and it's not possible to control what emails come in, so I shared this informtaion with Phil and Liz who are the two colleagues re-training me. They were surprised because my manager hadn't mentioned this to them at all and the worst part is that if an email comes in for a container booking for example which isn't until next week's training, I've to ask my colleagues to do it. As it's likely to sound like I'm being an obstructive moron, I showed Liz the letter from HR confirming this. Anyway, the paragraph above mentions the earplugs issue. Liz read this and then said to me that in her eyes if I've to wear earplugs for work than I'm not ready to come back. I was too shocked to reply with anything of use. I thought about it for a few minutes and then went back to her to explain that my hearing issue is permanent damage and if I wasn't going to be allowed back because of my hearing they would have to pension me off or something rather than simply dismiss me for capability. She then added that she had been hoping to have my job if I didn't return I am not happy at all that my training and therefore my capabilty are in the hands of someone who will personally benefit if I leave. I can't talk to my manager about this because she has a wonderful habit of going straight to the person you have just talked about and telling them what you have said. I can't go to HR because they go straight to my manager and tell her what's been said. It's like being at primary school, there is no concept of confidentiality whatsoever. I feel really uncomfortable now and not very 'safe' or confident and I can't talk to anybody about it, so I'm talking to you guys. I hope that's ok, because I feel like I'm moaning Dawn x

Hi Karen, I am so sorry to about the scary time you and your husband are both having. Do you have a strong support network around you made up of friends and family? What help will be offered to you when your husband is discharged, will you get help from carers etc? You have come to the right place - BTG is a wonderful website full of lots of information, advice and support. It's really good to have people to 'talk' to who understand what it's like. When I was in hospital I had no idea what I was doing or saying. I have few memories of that time (thankfully) but I do know that I was very confused and nothing made much sense. Everything was strange, even my own reflection in the mirror. I made use of Headway. Just a note though, when I applied to attend I was told I'd need a social worker in order to get funding. That took 13 weeks, so it might be worth trying to find out about that as soon as possible. I wish you and your husband all the best, Dawn x

Hiya Stephanie, It's really hard not to compare yourself to who you were before, but try to compare yourself to who you were last month instead and it changes the frustrations completely. Suddenly you will see progress instead of loss and it's a much nicer feeling. As for the weird feeling in your head, when I get that it's my brain yelling at me to please stop and rest. I actually can't keep going when I get that feeling, it's like someone unplugged me from the mains. The lights are on but no-one is home. You will hear this a lot, but it's early days! I'm almost 14 months in and it definitely gets better with time. I wish you all the best, Dawn x

I have just realised that not one of my colleagues has asked me about it, so I haven't got a very good answer for this! I did bump into a chap the other day that I worked with years ago and he said he'd heard that I'd been seriously ill. I told him I'd had a brain haemorrhage and he understood that. With friends and family it's 'when my brain blew up' and with neighbours, old colleagues etc it's brain haemorrhage. Dawn x

I was very upset with the loss of logic, planning and multi-tasking too. I have always been a very logical problem-solving type of person. I used to be very handy in the DIY area too. So much so that my partner and I have always joked that I'm just a bloke without the bits! My sah was about 14 months ago and I returned to work 5 weeks ago on a phased return. Last week, I noticed some multi-tasking going on and was really delighted! I think that when I was at home for a year, there was no cause for any multi-tasking whereas at work, there is not much choice if the situation calls for it. I was photocoying some stuff when the phone started ringing and as a result of the phone call, I had to type out an email while on the phone. Of course, at home there is not much call for that kind of thing. The worst thing for me (and most of us I believe) is the supermarket. There is just too much going on to be able to filter out what you need to. I go to the supermarket every week. It's better when my partner is on earlies and we go together but even when he is on late shift, I still go myself. I'm not sure if it's a good thing to push myself this way but I have noticed in the last 3 or 4 months that the supermarket isn't the overwhelming place that it once was. I am not trying to tell you to push yourself at all and please don't! I have perhaps been unusual in my recovery but what I'm trying to say is that over time you will notice changes. Things get better. I don't know if we ever go back to what we once were but if I was entirely honest, I prefer the new me and don't actually want to go back to what I once was. I wish you all the best and good luck with you return to work on Monday! Dawn x

Hi Carl, this sounds very positive and I'm glad you are now doing something that you enjoy. I hope that makes the days seem shorter for all that they are physically tiring. Do you sleep any better now? Since I went back to work, I've managed to get into some kind of sleep routine and I'm rarely awake beyond midnight these day, it's a pleaseant side-effect that I wasn't expecting at all so i hope the same is happening for you witht this more physically demanding job. So, the countdown is on for retirement! This time next year you will already be freeeeeeeeeeeeeeeeeeee! Dawn x

Oh Michelle, that's brilliant, I hadn't thought of it that way thank you so much!!! I think I will raise that in the next review which is tomorrow. As for the 'sleep' plugs, I use Tesco's own, it's a green and white packet, £2 for 6 pairs and they are the best ones I've ever found. They are a little long for me, so I snip the tips off, then I can get them in deeper. They do make the supermarket more bearable....and the office!