DawnS

Hi David, I hadn't actually attended any kind of an event until last night. Yesterday, we had to pick Andy's car up from the garage and visit his parents as they live in the same town. We did a little shopping and then spent a couple of quiet hours at home in the afternoon. In the evening, we had a 60th party to go to. Originally, the plan was to drop Andy off and then come home but a lot of his work colleagues were going to be there and I haven't seen them all since moving up to the call centre in December so I thought it would be nice to pop in and see everybody as they are always sending messages home with Andy inquiring about my new role. I have to confess to thinking that a 60th would be quiet and dull and not hard to handle, but boy was I wrong! It's a good job that I have earplugs hanging around in every bag I own because if I had not had them with me, I wouldn't have lasted 5 minutes. The noise was overwhelming! There was a group of about 20 of us together and about 200 people at the party. Every now and then, I went outside to the smoking area (it was well lit and had heating and seats) for some silence and a time-out. I managed 3 hours and then we had to come home. I found driving difficult as I was very tired by that time. Despite getting to bed way past my usual bedtime, my post-sah inability to sleep past 07:00 means I have had less than 7 hours sleep which just isn't enough for me. I am glad I went to the do, but if I'd known how loud and challenging it would be, I'd have done less in the morning. That'll teach me not to be ageist! I am also very conscious that I have work tomorrow and I do not feel at all rested or ready for it. We have a very busy day on a Monday and I also have to work 30 minutes longer. Like everyone else has already said, if you do go, make sure you find somewhere quiet for a time-out whenever you need one. Don't wait until you need one, have a time-out every now and then anyway to keep your reserves topped up. Most of all, if you go - enjoy it! You are making new memories, even if you only manage a few hours.

Sandi, I hope your face settles down soon and you will be able to up your hours as planned. How does it feel to be doing some voluntary work? I have been back to work for 6 months now, although I've only been full time since the beginning of December. On the whole, I cope much better than I ever thought I would. Most of this is due to the level of support I get from my partner. When he is on earlies, he cooks dinner for us every single evening. He hoovers every day and does the dusting. We have settled into a routine where I take care of the washing, ironing and cleaning the bathroom while he does virtually everything else. Sometimes I feel bad about the amount he does - he works full time too, but he just tells me that he is happy to do whatever it takes to help me stay in work. I had a bad day on Friday but it's only the 2nd bad day I've had since going full time so I think that's actually very positive. It was a very strange day, I hope you don't mind me sharing. I'd only been at work about 30 mins when a very strong headache came on. I was speaking to a customer and realised I couldn't understand what she was talking about. I got the call finished and my team leader told me to log out of the phone and take 5 minutes fresh air. I took some painkillers and went back to work when they started to kick in. I am not sure how I got through the rest of the day, but finally home time was in sight. I have this week booked off and I dragged my last call of the day out for a few moments to get to 16:45 so that I could legitimately log the phone off. I eneded the call, logged my phone and PC off, chucked my coat on and wandered off up the call center. As I was walking I thought it was a bit strange that no-one else was leaving. I looked at my watch and thought 'no, it's time for home'. As I got to the door, it finally dawned on me that I finish work at 17:15 and I had shut everything down 30 mins early! The thing that bothers me about that most was that i genuinely thought it was home time It would seem that booking a week off was a good thing. I don't usually take a week off for no reason but perhaps I'll have to book some time off regularly throughout the year to keep myself rested.

David, I spoke to my GP about my extreme increased desire for sweet foods. He told me that he has another patient who had sah and she is exactly the same. While I know that I was supposed to gain comfort from this, my main thought was 'there's someone in town who's had sah? who?where? I want to go for coffee'(ok, I really mean hot chocolate with whipped cream and marshmallows;-)). I think you have hit the nail right on the head, our bodies are craving energy and if we are long-term bad eaters then the only way we know how to provide a quick boost is to eat sweet things. I have not experienced the benefits of healthy eating before (I've been overweight forever) and it would never have occurred to me that what I ate could change the symptoms I suffered. I always assumed I felt so shattered all the time because I jumped from 20 hours to 40 overnight, not because I eat like it's my last meal at every meal. In my new role, I am no longer surrounded by people who eat constantly like I was before. (This new role just gets better and better!) In fact, I found out this afternoon that the girl who sits to my left lost 6 stones and has kept it off for 5 years. As you might imagine, she doesn't fill her face all day long like my old colleagues did. No-one brings in bags of doughnuts and cookies and there are not 6 or 7 packets of biscuits lying aound at any one time waiting to be eaten. Lynne, you make a very good point about not depriving myself. I have found that my cravings have completely dropped off at the moment, I hope this is long term but I will keep an eye one it. I assume that my blood sugars are more stable now. I used to eat my meals about 6 hours apart on a work day and didn't realise the effect this was having. Can you all tell that this has been an utter revelation to me?

Hi Wade, welcome to BTG! I used to enjoy regular long walks before sah so when I got home from hospital, I was shocked to find that the end of the street seemed to be miles away. I honestly thought this was a product of the sah and it wasn't until the occupational health doctor mentioned to me that it was due to me lying in a hospital bed for three weeks that I understood that it was really muscle wastage. It might sound obvious, and beforehand it would have been, but I lost most of my logic abilities in the bleed. Once the penny dropped, I was able to approach exercise very differently, I understood that I would need to build up gradually and not push too fast too quickly. The same applies for your brain. Don't expect too much too soon. You have experienced a huge trauma and your brain needs time to recover. In the same way that you wouldn't go out running within weeks of breaking your ankle, don't try to make your brain sprint before it is ready. Your brain will make it clear to you when you are pushing too hard. Headaches, dizzyness, sensitivity to light and noise - all these things are signs that you are doing too much (or at least they are for me). To begin with, this can all feel very frustrating but those feelings lessen with time. Instead of being irritated that I can't get past 22:00 even at the weekend, I now relish having time in the dark in the silence (earplugs are my friends!) with the understanding that I am resting my brain and giving myself more chance of having a nice day tomorrow. Try to view your week as one single time unit. Try not to arrange things on too many consecutive days, space your plans out some. You will soon find a level of activity that is good for you. Dawn x

Today was my second day of eating very little but healthily and often and my goodness, what a different day I have had! Monday's are always a hard day for me for two reasons, 1) by 11:00 we usually have taken 2,500 phone calls and 2) I work 30 minutes extra so that I only have to work 6 hours when it gets to my Saturday shift. The combination of these two things mean that by the time I get home, I generally feel like amputating my own head. Today, I grazed lightly on nuts and fruit whenever I felt a drop in energy or an increase in fog and I have had a very good day. It cannot be a coincidence that today was my highest ever productivity rate, I took 79 calls and usually I average about 63. It seemed that I had fewer challenging customers today, was that really the case or was I simply better equiped? Also, when I woke up this morning I felt cheerful instead of shattered. In the 18 months since sah, it has truly never occurred to me that the fog could be beaten or at least eased. Thank you everyone for the suggestions!

Thanks everyone, there are some really good ideas in there as usual! I went food shopping with Andy after work today because I only did 6 hours. He has been doing the shopping for me ever since I went full time and so this is the first time I've been in any kind of a position to tag along. Not long after we started the shopping, I started to feel fatigued and remembered what you had all said about nuts. I bought some raw unsalted cashews and ate a small handful. Quickly, the fog started to lift and I felt much better. Not only have I bought some raw nuts, I also bought dried fruit and some tiny little pots to put them in so that I am not tempted to scoff the lot. I am serious about eating differently because since working full time, I feel so tired and I have very little energy for other things. I get home at about 17:45 and am in bed by 21:00. While I am managing ok, I don't fancy that kind of a schedule forever so I think the answer to that will definitely lie in making better food choices. Dawn x

I have noticed recently that there is a very close link between how much I eat and how much brain fog I suffer. The less I eat, the faster and thicker the fog. When I reduce my portion sizes, I feel weird. I get shaky and the wall in my head comes on thick and fast. I am grupmy (ok, extra grumpy ) less tolerant of noise and bright lights than usual and it takes much longer to recover. So, my question is...how on earth are you supposed to get rid of the flab?

Hi Sandi, that sounds very positive, I know what a huge difference the right return to work can make so I wish you all the best! I know what doesn't work.... 5 weeks of getting up at 5 a.m to run your partner to work so that you can have the car a few hours later having already driven about 36 miles before you even start your 8 hour day. I got my car back this morning thankfully so I am hoping the weird shaky feelings and extreme grumpiness will start to subside now (no doubt Andy is hoping for that too ) My new job is so much better, but no amount of having a nice working environment is going to make up for that kind of a start to the day!

I have very sensitive hearing and still get a sore neck although after all this time, that could me more to do with the fact that I sit in front of a pc all day long than the sah. For many months after the sah, I could hear a sound as though someone in the flat was watching football. I could hear a crowd cheering all the time, even when I was home alone. This has passed with time and my hearing is less sensitive than it used to be. That said, I was really struggling with the noise at work today!

Hi Amy, my memories of that time are rather blurry, but I do recall that I was desperate to get home. The HDU at John Radcliffe was extremely noisy and there were people in a ward downstairs who screamed very loudly and at length. I should add that the sah has left me with extremely sensitive hearing, so perhaps it wasn't really as noisy as I recall. Nobody discussed with us what it would be like living with sah on getting home. We were told that an OT would visit us at home, someone phoned my partner to ask if I was managing to get in and out of the bath ok and that was that. I have never spoken to a neurologist since the day I was discharged. When I went for my 6 month chek, the only person I saw was the radiologist who did not discuss anything with me at all and it took several weeks to receive my 'results'. This was a letter telling me I should go back in August of this year for my 2 year check. I assumed as there was no further info, my MRA was ok. I contacted Headway myself after receiving advice on this site. This took a long time to arrange (13 weeks if I remember correctly) because I had to be assigned a social worker first. Perhaps if this has been explained to us when I left hospital, we could have started the process sooner. By the time I was allocated a social worker and my funding was approved, I'd been home 8 months and was already well on the way to recovery, in fact I got my driving license back the same week. I have recovered well since I got home and am now working full time once more. I do feel that more information would have helped both my partner and myself. If it wasn't for this website, we'd have been very much in the dark. I am very pleased with how well my sah was treated, I had coiling but the aftercare leaves a lot to be desired.

Hi Donna, I am sorry that you are feeling this way. It's difficult when you feel like you can't talk to your family, sometimes you can feel like you have over-stayed your emotional welcome huh? I hope that the counselling helps, have you tried CBT? I found it particularly good for anxiety as it makes you challenge your own thought process. Also, chamomile tea works absolute wonders with anxiety. It sounds odd I know but after you drink it, you can actually feel yourself calming down. I used to use it in my previous role. It didn't solve anything, but it helped me cope with the attitude of those around me and for how effective it is, it's actually pretty cheap. I hope you feel better soon x

Hi Fern, I only had the one aneurysm so I don't have actual experience of how this feels. It's likely I was born with my aneurysm though and after my mum died of sah, I asked a couple of times to be checked. Each time, I was referred to an optician instead. The opticians were both as confused as I was by this. Anyway long story short, the aneurysm burst, I had a 3 week stay in John Radcliffe and coiling done. It frustrates me that I could have had the coiling without the sah and all it's effects. Good luck! Dawn x

Hi Teechur, sorry you are not well, but congrats for getting that first year out of the way! 'Too old to run'? How did you manage to take that one on the chin without planting one on his? So much for encouraging us all to get off our bums. I hope you find an answer to the headaches soon, third time lucky perhaps? Dawn x

Hi Mary, I have this probelm too. As I now work in a call centre, I can't wear earplugs to work anymore. The noise of everyone talking does not bother me as it's like a general hum, but I sit next to an 18 year old chap who is at 'tapper'. I feel for him because when I look at him and he quits instantly...what a stare I must have! I too can only have the t.v on 9 or 10. If there is a lot of clapping in a show and I am tired, there is no chance of me watching it at all. I have noticed that the rustling of plastic bags and the noise tin-foil makes drive me nuts. That might sound like a weird thing to say and I only noticed it at xmas as it seemed that Andy took hours to wrap the turkey in foil. I also cannot stand the sound of the washing machine or the dishwasher. Even with both the kitchen and living room doors closed, I can hear it. I tend to put the washing on overnight so that my earplugs drown it out. Also Andy has developed a lovely habit of doing the washing when he gets home at 14:00 so that it's quiet when I get home. Isn't he lovely

Hello and welcome to BTG! My Dr okayed me starting to run again at about the 1yr mark. He told me that I must start as an absolute novice and so I was doing slow runs of 30 secs running, 90 secs walking for half an hour twice a week. I was just about thinking of increasing to three times a week when I started my new role and went full time. I did get headaches to begin with but these passed after a few weeks. I miss running because of how much better it makes me feel emotionally but there is no way I can use that amount of energy and work full time too. Dawn x

David, that made me laugh, not counting at all huh?! 40 hours is going well thanks, I'm impressed with myself! I'm getting used to it and each day I feel a little better than the day before. It helps when I get some sleep, last night I got a good 10 hours sleep, can you tell? I am enjoying my new job very much and it's helping me to feel like a normal person. I even find myself multi-tasking as I am able to chat to a customer about one thing while filling in an online form about something else entirely. Who'd have thought it? I am rather excited by all this because I can't wait to see what else is going to change and improve as time passes. I am so glad that I changed my role P.s...car is getting worse by the day, don't ask!

It's really difficult to stop people talking about it. When I got home from hospital, every time we bumped into someone we hadn't seen since sah, we had to go through the whole story again. Can you ask people to tell you how far they think you have come and what good progress you have made? I wonder if this would be a gentle way to get them to realise that you are finding it all a bit negative and to turn it around? I didn't have a shunt so recovery is probably very different for me, but the bitter feelings did subside with time. I think the first anniversary is probably the worst, I hope...it's the only one I've had! Good luck with your first anniversary and here's hoping that getting it out of the way helps you to feel much better. Dawn x

The one thing that has always remained very hard is cooking a meal. I am fine with something simple, basic and unhealthy - a jar of Tikka Masala with chicken and rice. If I try to cook something with meat and vegetables, I'm stumped. I simply cannot fathom the different cooking times. My brain runs dry and I stand in the kitchen completely blank not knowing where to even begin. Does anyone else have problems with this? Since I went full-time at work, my other half has been cooking for us. It's wonderful! When he is on earlies, my dinner is ready when I walk through the door. The only problem with this is that I am not forcing myself to practise cooking meals because there is no need. I decided that at weekends, I should try to take responsibility for planning and cooking the meals. Tonight was my first attempt and I managed to dish up a dinner of baked chicken, mashed parsnips, carrots and home-made cheese sauce. I did get a bit 'stuck' now and then but ultimately I managed it and I am so pleased! It has made me feel very positive and I wanted to share a good story with you all for once! Dawn x

Hi Wem, congratulations on completing your first week! That must be a good feeling. Don't worry too much about not keeping up your other tasks, I tried to do exactly the same when I returned to work and it was fine until I was put up to 20 hours and it went a bit downhill. I was disappointed, but I am very blessed in that my other half is extremely supportive. I find that I get used to changes surprisingly quickly and am now managing to get some other things done around the house instead of just eating, sleeping and working full time. I hope you find that the same happens for you! Dawn x

I am loving this thread! I can't remember last Christmas particularly, little snatches here and there that are a bit dream-like and that's all. This year I wouls say I'm at about 80%. Like everyone else is saying, it's variable. I'm rather impressed with 80% because this is my 6th week of full-time hours. If I was in my previous role, I would probaby have come in around 40%. It's amazing the difference a supportive manager can make to the return-to-work process. Instead of 'Dawn, why are you still writing things down and not multi-tasking' I get 'Dawn, do you need an extra break today, you look a little tired'. What? Things have moved on greatly in 12 months. I have finally reached the acceptance stage and not railing against the new me has made life much more pleasant! I still have sleep problems but my memory is significantly improved and logic is definitely returning. I can even multi-task in a small way. These last chenges I think are down to returning to work, it seems to have boosted my brain somehow. Talking about work, I'd better go and get ready. Have a good day all! Dawn x

Hi David, sorry to hear that you feel down. I haven't really had depression since sah but have suffered in the past, badly enough to take 5 months off work and I understand how endless it can feel. I also understand the need to chat with mum, I often feel that way too and the inability to do so really adds to the sadness deoesn't it. When was the last time your medication was assessed? When I was on ADs, I was told that I would probably need to try a few before I found one that really worked for me. In the end, the only thing that really worked was some CBT and lots of exercise. I realise that exercise isn't the easiest thing after sah and especially at this time of year when it seem that all the daylight hours are given to work. Who wants to exercise in the dark? But I cannot emphasise enough how exercise makes such a massive difference to your emotions. As Daff has suggested, noticing the small things in your life is really helpful. It shifts your focus completely. When I was very depressed, my doctor suggested to me that I try to list each day (in my head, but this was before the memory problems!) 3 nice things that happened or 3 new things that I learned. It sounds a bit daft, but it does make you review your day in a different light. This might sound odd: I also had a pack of stickers with various smilies on. Each day, I chose one for the calander to represent how I'd felt overall for that day. This kind of tracking can help because it's easy to think that every day has been a bad day, but there are always some that are better and even if the smilie chosen for the day has a straight line for a mouth, if this is not a down-turned line, then it's showing a better day. It's surprising at the end of the month to look back and see that not every day has an angry or sad face on it. I found this very helpful. Dawn x

Hiya Sandi, I sometimes wonder if I should have asked for a different role from the beginning but I honestly thought I would be fine with my own job as I'd been doing it for 3.5 years previous to sah. It wasn't until I went back that I realised it was a far more responsible role than I had ever realised and that my abilities just weren't up to the task at hand anymore. In deciding to return to work, I hadn't taken into consideration the personalities of those who I would be working with and it turns out that this is a very important consideration too. Although it was deeply unpleasant to begin with, I don't think I would change the way it all happened now because I really appreciate my new role and I think that a more simplistic job is the way forward. Perhaps if I work within my limitations for now instead of pushing my brain so hard, I will be able to build up to something more demanding in the future. Or maybe I'll just sit back and enjoy a job that actually ends at 17:00! I wish you well in whatever you decide to do xxx

Macca, I am so pleased that things are working out well for you. Have a wonderful Christmas, I shall join in with the toasting!

Hi Everyone, thank you all so much for your input on this subject, you all helped me to come to a hard decision and I'm already reaping the rewards! I started my new role 3 weeks ago. I went from 20 hours per week to 40 with no graduation whatsoever. I was rather concerned about this and after the first day, I didn't think I was going to make it but here I am after completing 3 full weeks of full time hours and I am still feeling ok. I can't even begin to describe how good it feels to be away from everyone's high expectations and the negative weekly meetings. I have been placed in with a team of interns and will stay with them for several weeks before being expected to work alone. This is such a nice gesture because I know that they are rather short staffed in my new department and could really do with me to be getting on with it. The staff seem very nice, I was sitting alone in the canteen one day because most of the interns smoke and two permanent members of staff insisted that I sit with them instead. That wouldn't happen with the department that I've just left! I am noticing improvements in my stamina, memory and my logic abilities are coming back too. I can even do some maths in my head which has not been possible since sah. I am putting most of these improvements down to a lack of stress, what a difference this move has made! Thank you all for helping me to get into a better place! Dawn x

Hi Michelle, I'm coming to this thread very late and I don't know how I missed it in the first place! I'm glad to hear that you are seeing improvements even if you did crash later, to have gotten through the first day was a brilliant achievement and then to go on to doing voluntary work too is amazing! It's such a good feeling to see positive changes and it's really nice to read about them too. Dawn x