DawnS

Hi Everyone, here I am looking for a bit of advice as usual! I have asked the call centre manager about reducing my hours. It is possible, but it's not his decision. I have to fill out a form, submit it to my team leader and then she will have a meeting with me, HR, the rota manager and another manager, phew! The form itself consists of telling them how my reducing my hours will benefit the company, what problems it will cause and how to resolve them amongst other things. it seems obvious to me that this all needs to be worded in a very positive way...my reduction on hours will mean that my colleagues have to answer more calls,. however, my availability rate will increase, my call duration decrease and so it will be a case of quality rather than quantity for the hours I do work. A friend suggested I visit the CAB before filling the form to get some extra advice, and this is a fantastic idea, except that they are only open while I am at work. I have no holiday left and basically cannot visit them for advice! What I am wondering is this...are there any obvious pitfalls that I am not seeing? Are there any keywords that I should mention? Although my logic and reasoning have improved by miles, I do still struggle to 'create' things and word things well so I'd really appreciate any ideas or input anybody could offer. Sandi, I am intrigued by the coping skills class. Is it helpful? What kind of thing is offered?

I had strange sensation in my upper lip for a very long time. It has faded now but not completely gone and if I am extremely fatigued then it will come back. I also get strange feelings in my hands which is very hard to describe...sometimes it feels like they belong to someone else and I can't feel them properly. Again, these days this is something that presents itself when I am very, very tired.

I have experienced many changes in myself since sah, some of which are quite monumental (at least to me they are!). I was wondering if anyone else has noticed anything similar? If I was honest, some of the changes are so good that I have to say I prefer my life the way it is now. I'm not sure if some things are personality changes or just major shifts in perspective. I'd love to hear others' experiences or opinions? Firstly, I used to be rather an anxious person, bothered by what other people think. If someone nearby was in a mood, I would assume I had done something to cause it. These days, I notice the mood and think nothing of it. I used to get so very upset if I caused some road kill such as a rabbit that I may still be crying when arriving at work twelve miles later. This would be so bad, I'd beat myself up about it for a couple of days. A few weeks ago, I hit a rabbit and thought - oh, I've made an easy meal for some carrion eaters. a much more normal response I think, certainly less exhausting. I am no longer petrified of spiders and in fact can now sleep in a room where I know there is a large one lurking. I've even been known to pick one up and chuck it out the window. I am no longer terrified of the dentist, to the point where I have had lots of cosmetic work done which I've wanted for years but have been too afraid to be able to sit in the chair long enough. And my favourite - I can eat food as spicy as it can be made...yummm curry! Surely this one has to actually be a change in the brain? Spicy food has always caused me physical pain in my mouth. Why is it suddenly ok? There are many more, but I'll stop now as I could go on for pages. The general gist is that I have significantly less fear and anxiety now. Life is much more relaxing than it used to be and I see the funny side of things most of the time, what a relief!

My achievement was actually almost two weeks ago. We had friends for dinner so I prepared a lasagne the day before. On the day I cooked the lasagne, garlic bread and potato wedges for the adults and a pizza for their little 'un. It was only when I sat down to eat that I realised I had just made dinner for five people! I was very, very pleased with myself

I'd forgotten about Acas entirely, so thanks Lynn for the reminder. This is why talking to you all is so good! Daffodil, you have raised some interesting points. We are not paid for our breaks which is why I'm thinking of 6.5 hours per day, that way I can still have a 30 minute break. I cannot open the link that you posted for some reason, even copying and pasting into my browser didn't work, is there another way to access it? I've had mixed responses from my friends with regards to changing my hours. One suggested that I was giving up without a fight and letting my brain injury 'win' . Another said that it has nothing to do with brain injury, anyone in their right mind would reduce their working day if they could afford to. That pleased me greatly because it made me feel more normal!

Hi Everyone, I'm looking for a bit of input from the only people who understand what living and working with SAH is actually like please... I've been back to work for 13 months and full time for 10 of those. Although changing roles (and therefore my manager) has helped enormously, I am finding that as time goes on, it's getting a harder to get through the day instead of easier. The changes my new manager made to my breaks in the afternoon a couple of months ago has made a big difference but really, by 14:30 I'm done in and still have 3 hours to go. My partner is very supportive and would like me to go onto less hours. Fabulous! I am thinking of asking for 6.5 hours per day which will cost me around £100 per month after tax. The only concern I have is this - will this allow them to start talking about dismissing me for capability again? I've tried to research this on the internet but can't really find any solid answers. Surely if they have had me back for over a year, that window of opportunity for them has passed by? Any thoughts please?

This is beautifully written and so accurate! I'd love to show this to some of my colleagues and even friends who seem to have decided that I am fine now because after all, the sah was 2 years ago. Perhaps my GP could also take a peek as he is of the 'you have survived, what more do you want' variety.

I have a dent on the front right hand side of my head just behind my hairline. To begin with, it would change size depending on how tired I was, but this has settled down now and it also seems to have shrunk to about half the size it was to begin with - the tip of my index finger fits in the dent perfectly.

I think there is something in the whole 'expectations' thing. Last week, I had the week off. We didn't go anywhere, just stayed at home. When I have time off, I always have these weird and wonderful ideas that if I normally work an 8.5 hour day, then losing work from the equation means I can get loads done. Er, no. When I take work out of the equation I flop big time. I actually have less energy than I have when I get home from a day at work. Perhaps if I didn't expect anything I'd get more? I am so tired of feeling tired. I know that it's better than it used to be and no doubt that means it will continue to improve. I want to stay positive but some days it's so hard. When I get out of bed on a morning, it takes about 30 minutes before I start to feel remotely awake. I often feel grumpy and fed up which makes me feel more fed up as I get bored of myself and I worry about the effect this will have on my partner. Where he gets his patience from, I have no idea!

I am sorry to read about your mum, that must be very hard. With regards to your scan, just to let you know that your results don't really tell you anything either. This may vary from region to region perhaps, but don't expect too much. In response to both my 6 month and 2 year scan, I received a letter mentioning a future appointment and that is all each letter said. The radiologist did tell me that if anything was wrong they would get in touch very quickly, but like everyone else has said - it would be nice to have some reassurance that all is ok.

It's so hard when people just don't get it. A little trauma? Unfortunately, that's pretty much what it seems to other people. I often have to begin my explanations with the words 'it's so hard to explain to someone whose brain works normally' in the hope that this might alert the listener that we are not talking about normal stuff here. Sometimes it helps and sometimes it doesn't. What was your boss like before your sah? I learned the hard way that my near-death experience meant nothing at all to my narcissistic boss. She actually appeared to take pleasure from our weekly meetings when she would complain that I was still writing everything down and just how long did I think that might last?? It was very hard not to let her attitude make me feel like I wasn't doing well when in fact I was doing extremely well and venting here was exactly what helped me to keep going. Try not to let you boss make you feel like you are not making progress in leaps and bounds!

SarahLou, it's very hard not to feel despondent when we have a set-back, or what we perceive as one. Last Wednesday, I had to go into work an hour early for some training. Although I find full time hours very tiring, since I adjusted my breaks it's all been going very well so I thought that one teensy weensy extra hour couldn't possibly be that hard. Boy was I wrong! I ran out of brain by 14:00 that day and struggled badly for the rest of the week. What I am trying rather ineloquently to say is that we all have our limits and when we surpass them, we pay. That doesn't mean we have failed, it means we got over-confident for a minute and the brain injury has marched out to put us back in our place. Dawn x

Hi Desy, I am sorry to hear that you are feeling this way. I just wanted to mention that with the exception of the body jerks, I experienced the sensations you have mentioned above for many months. I had a very strange twisting sensation to the right side of my face just above my lips which lasted continuously for well over 8 months. As well as this, I had pins and needles in my arms and which didn't go away when I moved so it didn't seem to be related to circulation, crawling skin was regular and also from time to time I'd have the strangest feelings in my fingers as if they were not connected to me at all. All of these strange sensations disappeared gradually. It's hard to say when they stopped exactly but in my case by the time I went back to work a year later, most of the weird sensations had disappeared. Are you able to book an appointment with your neurologist or perhaps a different GP? While perfectly nice, my own GP doesn't have a lot of understanding when it comes to the emotional side of recovery, but there is a lovely female doctor there who is very empathetic and so for emotional matters I tend to book appointments with her instead. Is there any option like that available at your surgery? I hope you feel better soon, Dawn x

I am very lucky in that after acres of habitat were wiped out to build all the warehouses on our estate, the owners salved their conscience with a little nature reserve at the back. It's only 10 minutes walk from the call centre and there is a path all the way round with lots of birds and it's very quiet. I walk around part of that twice a day and it's very restful. I can't sit in the canteen because of the noise, though being back at work has also helped with the hearing issues I experienced in the early days. I can't spend my tea break chatting or reading. It might seem a little anti-social but when I spend all day talking on the phone, I need my breaks to be as silent as possible. Mary, I can totally relate to your post. I too have noticed that I'd been scraping by with working and resting and not getting a lot of living done. I've started doing a little cooking again now and then which feels better. I also make sure that I spend a few hours with one friend per month. It doesn't sound like much, but I've been investing so much of my energy into working that it's been too easy to let friendships slide. Today, I worked for 9.5 hours because there was some training to be done this morning. I didn't think the extra hour would matter so much, but by 14:00 it felt like it must be late evening. Thankfully, I have next week off. Phew!

In the very early days, nothing was familiar. My flat looked really weird, doors were in the wrong places or there were glass doors that I was sure used to be wood. Nothing looked, smelled or tasted as I remembered it. This wore off eventually but I think this was more due to creating new memories of objects and tastes rather than the symptom itself fading. I'm 2 years in and although I don't have issues with recognition anymore, I do have perception issues. I can look at something, and not see what everyone else sees. This can be a picture or scenery or even a street outside. It's very hard to describe so I'll try an example: I was watching a programme one day and the scene in the background was a series of pillars. I couldn't understand what the relevance was. I asked my partner and he explained that there were no pillars, it was a row of flag-bunting because they were discussing the Queen's jubilee. I couldn't see the flags, what I could see was the gaps between. This is happening less and less as time goes on but will be more prominent after a tiring day at work. Like Mary says, all the brain power seems to be used up at work!

Thanks for the replies, I wasn't actually 'told' anything - everything I know has been gleaned from BTG. I was 35 when I had sah so I wonder if I'll have regular checks then? Mary, I don't know about anyone else, but I've not had any kind of report, each letter has simply mentioned the next appointment date and you are left to assume that all is good. The radiographer did tell me that if something is wrong you will hear more quickly.

I finally had the results of my 2 year scan today. All the letter says is that I've to go for another scan in 2016. I was expecting the complete lack of info...but I didn't realise we get a 5 year scan, I thought I'd be fully discharged now. Are there further checks or is 5 years the last of it?

My sleep pattern was all over the place for a long time. I'd often be awake until 4 or 5 am and then I'd only sleep until around 8 am. I wasn't napping during the day either. My doctor wouldn't give me anything to help as he said the more interventions put in place medically, the worse it would get. I couldn't see how my brain was supposed to heal if I didn't sleep! I think the problems started in hospital because they woke me up every 4 hours for the medication to prevent vasospasm and yet I has vasospasm twice regardless of the meds. I tried Nytol, Night Kalms and Valerian tea all of which would help for a night or two and then go straight back to the insomnia. When I went back to work, things improved as I had a daily routine, but I find the more exhausted I am, the less sleep I get. I have a back-to-front brain!

I've been back to work for 1 year today! Although I often feel exhausted, there are so many positive changes in my recovery that it's been very worthwhile. My memory has come on leaps and bounds. It's nowhere near like it used to be pre sah, but I no longer live from my diary. I still use it to take note of appointments and that's about it these days. I can occasionally multi-task, again, not as well as I could pre sah but hey - little steps! I can talk to a customer on the phone while filling out an order form for them at the same time. It wouldn't sound like much to anyone who has never suffered a brain injury, but to me it's huge. My new manager is fantastic, it has really helped to change roles. Happily for him (but unfortunate for me), he has put in for a promotion at work and is likely to get it which means I'll have a new team leader. Luckily, we have put a few things into place which won't be changed no matter who my new boss is. I was really struggling in the afternoons with fatigue. One day it came to me - if I extended my hours (stick with me here!) to finish at 17:30, I could have a 60 minute unpaid break which I have split into 2. I have my first break at 12:45 and the second at 15:30. This has made my day so much more manageable and I no longer collapse in a heap as soon as I get home so it's also improved my quality of life outside work. I hope every one is doing well with their return to work? Dawn x

Hi Win, I've started getting cramps fairly recently. They are usually in my feet, calves or thumbs. Why my thumbs I have no idea!

Michelle, thanks for posting this as some days I do wonder why I'm bothering with work. One week I had holiday (I think I posted about this at the time) and I felt so rough it really depressed me because I assumed the rubbishy feelings were work-related and it was a horror to find out that taking work out of the week made absolutely no difference to how I felt!

After informing the DVLA, my license was not revoked but I was told not to drive until they said I could. For the first 6 months I was perfectly happy with this, there was no way I'd manage that level of concentration. One day I felt like maybe I could drive. Eventually, I was given an appointment with a doctor who took me no-where near a car and asked me the usual pointless questions - who is the prime minister etc. When I was given the all-clear, I'd been off the road for 8 months and then suddenly I was allowed to drive for as long and as far as I liked. I do think this is all a bit wonky! Driving exhausted me in a way that I didn't expect at all. I didn't travel far to begin with, just the 5 mile trip to Headway which is over back lanes with very little traffic. Even now, the furthest I've driven was to Nuneaton last week which was a 100 mile round trip. I managed it fine, but driving with the sat-nav on was too much like multi-tasking for me and I found it very tiring. I still cannot listen to the radio while driving and if I have to have passengers, I prefer people who understand that too much conversation is not allowed

Recovery changes so much as it goes along. To begin with, there were improvements constantly but my memory was in such bad shape I didn't really remember the changes if that makes sense. After a while, the rate of improvement slowed down. I thought it had stopped but the other day a customer rattled of their phone number at very high speed (they like to do that for some unknown reason) and I noticed afterwards that I had still managed to get it down and it was accurate too. Even 3 months ago there would have been no chance of that as I wouldn't have retained the info, so I am still seeing improvements after 21 months. Try to compare yourself to yesterday or last week rather than what you were before because that way you will see positive changes instead of negative ones. For me, acceptance took it's time in making an appearance and although I like to think that I've taken this all on board now there are still days when my other half will insist that I sit down and simply STOP for a while because I like to keep going and keep going so I guess I may still be in a bit of denial afterall!

Hi Mary, currently I am in pain for being stupid enough to meet some friends in a pub garden on Sunday afternoon and spending a few hours sitting down with strong earplugs in drinking lemonade. Whenever I overdo anything, I get pain at the base of my neck on the left side. This burns and pulls and won't go away because I continue to overstretch myself by going to work. I wonder if it's a coincidence that my bleed was on the left? I get leg and hip pain and weirdly, face-ache. I assume that when I'm tired I clench my jaw or something. Recently I've been getting cramps in my legs and feet which is new. I don't really exercise except for the 40 minute walk I take at lunch time each day. Even though I know deep down that some exercise would probably help, I just don't dare because what I do today will detract badly from what I'm able to do at work tomorrow.

Hi Macca, It has Judi Dench, Bill Nighy, Maggie Smith and a few others in it. It's a proper feel-good movie well worth a watch. And in an attempt to pull the subject back round to the topic at hand, a lot of it is about doing something with your work and life that makes you feel happy and fulfilled