mshawx_head

I'm late to the discussion - as always... It happenes. Firstly, they rally round. Some to genuinely help and see how you are, others to come and see if you look a bit odd or they can see some other evidence. Then, as you say, when people figure out that you are alive and you're not going to flake out afterall, their attention drops off. And then as time goes on, and you've done a whole lot of recovering, I've found that the majority of people actually forget, or at least assume that you are just like you were before the head explosion. The thing which really cheesed me off, was a few months after I went back to work, people would ask me how I was (you know, that sort of loaded "How ARE you ?" intonation). A few genuinely wanted to listen for a minute or two (I wasn't going to go on and on about how I really was, just a couple of head lines I thought might interest them !). Many didn't. And frankly, I'd rather they hadn't bothered to ask. But as time has passed and I've recovered, I don't get those loaded questions much anymore. Its helped me to learn who are the people who have a caring side and those who don't. You learn who your real friends are through stuff like this. Hang on in there, be as independent as you need to be, but don't be afraid to ask people to help. You'll be surprised. They really feel pleased and honoured to be asked. Take care. Mags

Macca - well done on going back to work. Now all you have to do is to build the strategy which enables you to manage the fatigue and tiredness. Simple, eh ? (If only it was. But its vital you do that.) I know exactly what you mean. At work, pretty much they assume that I am over my illness now. When people ask how I am, they invariably say "fully recovered now ?" because I look the picture of health. I've given up explanations - they don't want to hear. Goldfish Girl - that comment about willful determination to overcome the damaged bits of the brain is spot on. Unfortunately, it takes us all a rather long time to realise that we can't utilise that strategy - like we may have done before our head explosion. To try to do that is really, really harmful for us, but its through forum's like this that we can hopefully understand (and accept !!!) that a bit more quickly, than we might on our own. Sandi - your postings continue to inspire and inform. Its really, really hard to make the transition you're going through - my heart is with you. I've found that if I can manage the tiredness (ie. not let it get too bad) then I can achieve much more, but when I get fatigued because I've tried to do too much and drive on way after my head was already telling me to stop, then I struggle - really struggle. When I get tired, then I get negative and feel depressed. I've begun to understand that its when I am tired that the negativeness hits me. I can watch myself transforming into a different person. That's when I also become a real grump with my hubby. I know I'm like it but seem incapable of "just snapping out of it" - my brain is so fried by that time that I don't have the energy to do so. So that's my current mission - manage the tiredness. I've written on this before, but I really find exercise helps - whether its a brisk walk, a gym session or a cycle ride. But I think what it does for me is to give my brain a break - a real break. Its difficult when you are concentrating on exercising to have much left for the brain to work too much on other stuff. I expect as well, there is a physical thing with vigorous exercise in it helping to aerate (spelling ???) the blood and that makes me feel more awake. The CBT therapist has also pointed me towards Mindfulness - a sort of meditation. Look for Jon Kabat Zinn's book "Full Catastrophe Living" although there are some more readable books on the subject. I haven't entirely embraced it but it is just another tool to have in the box. Hang on in there everyone. Mags x

Hi there All, I return to this thread time and time again. Work is so much part of our lives and I never stop wondering why it seems that so many of us posting here have been such driven people, and clearly have been defined by what we do for a living. People's ability to cope and somehow rationalise what the SAH has done to them and the impact on their work is amazing. Its not easy is it, this coming to terms with not being as you were before ? Its no wonder that there is actually so much expression of grief, because there is a bit of us which has "died" because of the SAH. Like many here, I seem to oscilate between feeling positive and chirpy because I really have recovered so well, and feeling down because there are things I very well know I can't deal with now (but which I think a lot of people still don't realise when they look at me) and the fact that I know I will never perform to quite the same level that I did before, doesn't stop me feeling grief and frustration about that. Just accepting that change is so very, very hard. Even with some therapy, I know that I am still not there yet, but I know with the support of BTG, I will come to that point. I guess it takes time for us to come to terms with the changes. Take care, Mags

Woah ... Teechur ! Just read your post. Crikey, this issue of just getting started is something I've been grappling with for months. I thought it was just me, and it was a lack of concentration. However, once I get started, I seem to be able to do more than I thought I could (providing I can keep the concentration going, or leastways its not going to need too much concentration for too long), but just getting out of the starting blocks, does seem to be a hurdle for me, too. Patience seems to be the thing we are all required to have copious amounts of - whether we are the SAH "victim" or a significant other. Recovery seems to be a very, very long road. Lots of good milestones along the way, but I'm beginning to understand that you never seem to be quite as far along the road as you perhaps thought you were. And the longer it goes on, and the SAH person looks in blooming health, the more problematic it is, because people (and you yourself, on a good day) forget that you've had a very serious illness and make the allowances that are sometimes necessary. And, don't know about all of you, I really hate it when I have to remind someone, because it feels like I'm making a miserable excuse. Mags.

Thanks to everyone who has replied to my post. Since my post, I've had a sobering experience. Having felt so pleased that I could at last listen to music again, leastways for a while, I attended a wedding reception last Friday evening, and found that in that kind of crowded environment, with loud music and lots of chatter and people that it was a lethal cocktail. By 10:30 I absolutely HAD to get out of there and go home - it was unbelievably tiring, and my brain was screaming at me. Mmmm, so I hadn't progressed as far as I thought I had. Another mental note to self about wishing too hard to be the old me again, and assuming that one small step means more than it does. Now here's another related question. Do any of you get a hot forehead when you're getting over loaded ? When I am doing a lot a brain stuff (multi tasking at work, for example), and especially when I going into brain overload (like at the wedding), my forehead is very often noticeably hot to the touch. Its quite bizarre. My hubby has taken to putting his hand to my forehead if he thinks I might be getting brain distressed. If I'm fairly normally cool, that's great, if its hot, he knows that I need to slow down a bit. Of course if you have a temperature from illness, it doesn't work ! Touching on Sandi's note about listening to music in the car. I'm a sad old Radio 4 listener (to those outside the UK, that's the BBC's mainly talking channel, some would say the serious or high brow station) and have been for years. I just love learning about stuff. So I rarely play music in the car. The interesting thing I have found, is that if I am tired (like, for example, when I've spent far too many hours at the office, or just done too much), if I drive home with the radio off - ie. in silence - then I really recover. I really have to force myself not to have the radio on - that's something about my habit of having the radio on in the car. But it really works. I've done it a few times now. Take care all - and thanks. Mags

This is really interesting. Over the last few weeks my work commitments have increased and I have not done the exercise I had been doing. I'm feeling increasingly fatigued - and exactly as suggested by Sandi K's posting, I feel like my mental fatigue isn't balanced by equivalent physical fatigue - and I feel grotty ! I'm trying to take a strong hold of myself and force myself back to getting that exercise in, so I can manage this fatigue better. Inevtably doing somne exercise means that I give my head a break, and stop pushing myself to keep on at it, work wise. Which can only be good. Don't know about anyone else reading this, but I have noticed that increased fatigue also results in more negative feelings and too many questions about whether I am coping, whether I'll be able to cope more (or less) in the furure and just really putting lots of stuff about my capability into question, which erodes my confidence about planning for the future - especially from a work perspective - and I find myself less willing to commit because I'm afraid I won't be able to do stuff in time, or completely enough, etc Damn the fatigue !!! Mags

I've just posted under one of the other threads about whether anyone else has had problems listening to music - either any music, but mostly the kind of thing you really used to enjoy. I'm guessing from the above comments, its probably quite a common issue. When was anyone able to listen to music again - what sort and for how long ? I read Tom's comment about not being able to listen to the news - yes, I went through a period of that too. Now I think I just don't want to listen because news is generally so negative here in the UK, that it makes you feel depressed in any case - and that's without all the complications our brain trauma gives us ! I think we all go through bad periods, but if its going on for more than a day or so, then its vital to talk to a professional and get help. And as we know, you can rely on some honest feedback and advice from the people who visit this website. Mags

Hey Sandi, I haven't been on in some weeks - since before I did my 110km cycle ride (went well by the way) - so I was strangely shocked to read how things have built up and come to a head for you over the weeks and months of working. I really wish you every success in this next step you are embarking on, and that the right formula for getting everything together & and life in balance pans out. It must be hugely frustrating to let go, when your every instinct (honed over your pre head explosion life) is to drive forward, even though the logical side of your brain knows its for your own well being to let go. At least Occupational Health are involving you in the plan. As always, your posts have really made me think, and think perhaps I need an honest review with myself (and being honest with yourself isn't that easy, is it ?) of where I really am at, and especially in terms of career things. Ambition is a terrible thing, as is that wish to turn the clock back and be able to be that driven person again, and cope with it all. My ability to multi task has moved on leaps and bounds in the last month or so, And ... WAIT FOR IT .... I can now listen to music again. This has only happened over the last week or two. Until now, it was somehow too much to deal with. That's a good sign, I think. I only wish that in my multi tasking ability building, that I can get on with building a satisfying job for myself again, some time in the foreseeable future, instead of feeling unsure about just how much I can cope with, and for how long a sustained period, without the dreaded fatigue getting in the way . So Sandi, you are making me do some serious (sensible) thinking .... thank you for that, and for your courage in telling us all about your journey. Have you or any or those reading this post had that same experience, of finding music too hard to listen to - I'm guessing it has something to do with all the sensory stimulation it gives ? I've another question. Are you able to drink alcohol ? I still can't, some 8.5 months since the head explosion. At first it gave me an instant headache from the smallest amount (just a sip), until now, I can have one weak small shandy but the next day I see to be very fumbling - all fingers & thumbs. I asked a guy who told his story at one of the Wessex Support Group meetings. His reply was he was drinking again a couple of days after they kicked him out of hospital ! So, its obviously not a general thing but he was a "big hairy army" kinda guy ! Go well and be easy on yourself. Mags

Well Teechur, I think you hit the nail on the head yourself. You got fooled into thinking you are more recovered than you are, and paid the price. I am now just over 7 months since NASAH and I'd say I'd recovered pretty well, but its only now that I can look back and know that at 7 weeks post SAH as you are, you have barely started. The fact that you are physically fit will really, really help you, but it can be a hindrance because you'll tend to think you are more recovered than you are - especially on the good days. So really, really force yourself to structure your diary with much more slack in it than you used to, and if you have a heavier day you can't avoid, PLAN to the following day or two to be slack so you can recover. If you're not tired its an added bonus, but at least you've planned your schedule to accommodate if you are. I'm a million miles away from where I was even a couple of months ago, but I still can get tired. Even today in a meeting when ther was a ton of information being told to me and the person was speaking fast, I found myself at one point feeling a bit woozy. Was most strange. So the bottom line is slow down and give yourself time. Don't even try to live your life in quite the same driven way as before SAH. Take Care. Mags

Hello Annie T, You are very soon after your NASAH and although you feel quite well, be careful not to push yourself too far too soon. Its a real balancing act between pushing a little more to get back to fitness, and not over doing it when you get over fatigued. When I opened this string, I was still off work - I had 2 months out as sick leave, followed by 4 weeks holiday. The holiday was really helpfull, because I was well enough (although far from fully recovered) to get the most out of it. I went back to work 3 months to the day after the NASAH. This was in the weeks before Christmas. The extra stuff to think of over Xmas really made me tired, on top of work, and by Christmas I progressed from part time to full contracted hours. Since the new year, I've been full time. The one thing I am being careful about is not working too much more than my contracted hours, and I've gotten a whole lot more relaxed about not being able to drive through and get EVERYTHING done, If some stuff doesn't happen, well that's fine now. I could never have done that before ! I also have to manage my work much more carefully. a couple of days "out and about" at meetings etc really can tire me out. So I plan for being tired and having really poor concentration for the day or two after these occassions. If by chance I'm not tired, that's great but in this way, it stops me putting too much strain on myself. Its taken me ages to get back into the discipline of the gym and if its too crowed or noisy, then I find it a bit of a struggle to cope with. Like JellyB, too much noise is still problem to me, and combine it with lots of lights and movement and that's really unpleasant and quickly tiring. Having said that, I'm about to ride my 9th Cape Argus Cycle Race in Cape Town in 2 weeks. I think because I've done it before, I'm not too worried about it, and I'm remarkably relaxed about having a rather slower time than usual (I'm pretty slow by cylists standards in the first place !), but equally its quite an important milestone for me, that just 7 months after the NASAH, I can do this. Its giving me the confidence that whilst I have to take things a bit easier than I used to, I do have enough mental energy to get through an endurance event. (You'll guess that its endurance sports that tend to make me tick.) So Annie and Sue and JellyB, don't be too hard on yourselves - don't try to behave like you did before. Accept that you have to plan out and manage your life more than before. Everyone around you will pretty much see you as you were before - only you know that you're different. The first step is learning not to live up to your pre-SAH expectations of yourself, but adapting to where you are in your recovery. Like I said to a colleague, if I had a broken leg, you'd be able to see it, but with SAH you can't but it is like a broken leg in that whilst you can hobble around on the healed leg relatively quickly, it can take quite a long time before you go bouncing around on it, or ballet dancing again !! Mags

Hi there all, Its a few weeks since I was on line. I've been working and we've been decorating the bedroom, and somehow there seems too little time left in the day. Certainly too little brain space. I've been working "full contracted hours" since coming back in January after the hols. At first I was really on top of things but I'm realising that the fatigue accumulates over a couple of weeks with going to external meetings or even to the office where there is lots going on. Add additional stuff like decorating the bedroom (nice new bed & carpet ) and the brain space gets quite quickly used up. I've been having some CBT, which has been really helpful for dealing with both the Psychological effects of a SAH but also with getting some of the emotional aspects of my life pre-SAH into the right perspective and shape. I've realised the SAH has given me a great opportunity to get a more healthy work/life balance, and I'm trying to think of the extra tiredness I suffer from now, as a friend to help me change the habits of a lifetime. Before SAH, I was the sort of person who just drove themselves to get everything done. I didn't stop until it was all done. I guess I was pretty proud of being able to drive myself like that. Pretty proud of those very high energy levels, and often used the phrase that I was "blessed" with high energy. But who knows, it could have been this very quality that precipitated my head blowing up. I'm a NASAH, so no abnormality or aneurysm to pin what happened to, just a vein that blew up they think. The unpredictability of the tiredness is frustrating, but there is also a predictable aspect to. If I am out at meetings for a couple of days on the trot, then I know I'm most likely going to be more tired than usual. If I'm not, that's great - a real bonus. So I'm kind of accepting the tiredness as a fact of life and enjoying it when it doesn't happen. Thanks to the CBT, I can accept this and realise its part of me changing the way I behave, and not feel guilty about not being able to be as driven as I was before. The CBT is really helping me in that respect, and also helping me to deal with coming to terms with other emotional triggers. At the moment, I feel comfortable about telling people that I need to stop, and take a break, or just have to leave because my head has had enough. I do have my reservations that as time goes on, I'll feel less comfortable about doing that, in that people will have a stronger expectation that I'm fully recovered, but hopefully the CBT can get my head right on that ! To answer the threads posted during January about people's expectations of when you are going to be better. I've had the same thing. Luckily I have a very supportive boss, but I still find people forgetting that I'm not fully recovered, and not least of all because there is little external sign that I've been ill. Yesterday, I met with someone from one of our partners. He'd been very ill about a year ago, and ended up with an organ transplant. On the outside he looks great, but he too spoke of the extra fatigue he has to manage around since he was ill, and dealing with the expectation of others that he's like he was before, because he looks great from the outside. So we're not alone in having an injury which because people can't see it, they forget about it, assume you're good and don't understand. Its not until you go through major illness that you can appreciate that proper recovery takes a very long time. My next challenge is riding the Cape Argus cycle race on 11th March (I should say that I've done this for the last 8 or 9 years). I know I'll be even slower than usual, and I'll be more tired afterwards. It will take me a couple more days to recover, but its another important milestone which helps me track my recovery. Wish me luck ! Warmest wishes to everyone, Mags xxx

Hi Carl, Welcome to Behind the Gray. I can see you've already found it a big help - as I think we all have. I'm now coming towards my first 8 weeks back at work, and thank goodness for the Christmas hols in the middle. I am learning all the time, and not least of all about how to manage my life in terms of how much I can take on. The frustrating thing is that its not always entirely predictable when or how I feel the fatigue. In the run up to Christmas, several people expressed how the added things to think about for Christmas were making life more difficult again - and I know I was finding myself getting more fatigued, because of it. When I got back from doing the Christmas food shopping, I was really at the end of my mental energy. I think we all find our own ways to deal with such moments. One of my favourites is to get out for a walk. I'm lucky enough to live a fe metres from the sea front, so I have a great place to walk. Other people, like to sit quietly. The trick is finding your own coping mechanisms - and other people's experiences talked about on this site can certainly help on giving inspiration. I am also making a distinction between feeling tired and feeling fatigued. For me feeling tired is when I feel sleepy, whereas fatigue is pretty much when my brain is protesting, and telling me to take a break. It helps to make that distinction, and not least of all to those around you - otherwise they get the sense that you have no physical energy, or are depressed, and in my case that's far from true. I just need to manage brain stimulation ! Sandi - have my second CBT session tomorrow evening so I'll try and do an update after that, but seems to be going along the lines of the sort of advice you've recieved about planning and managing, and not trying to do it all - like we both USED to do before SAH. Take care Carl, firstly be honest with yourself with how you feel and what you can cope with, and then with others. You might be surprised how supportive people can be when they see you actively trying to manage the modified you. And that's what I'd stick to ... you're different and modified. Steer away from the suggesting brain damage, even though on here we can admit to it, those that have no experience of this type of thing, get the wrong end of the stick and we run the danger of them imposing their prejudices about that sort of thing on us. Ta ta for now, Mags xxx

Welcome Mary, Like you, I've found this site of great support. We all have something in common and yet everyone's experience is at least a little different, as is the pace and way that the recovery goes. I know you'll find people here a great help - and just logon when you need to let off steam or bounce ideas and feelings off people who know how it is. I also was discharged with very, very little information. I'd always assumed it was beacuse mine was a NASAH and they clearly figured reasonably early on that it was routine-ish - so therefore was pretty uninteresting for the neurologists. Sounds like all these neuro's are the same, regardless ! Take care, Mags

Thanks for that posting Gill. I'll be thinking of you now, each time I wake up with pins and needles ! Coming out in sympathy together ! I always assumed the sort of cramp I get in my left leg after I wake up was more to do with the old back problem (I managed to give myself sciatica down my left leg a few years ago, just by reaching into the fridge) than the SAH, but its another thing which has only started ssince SAH ! Your comment about the numb foot makes me wonder . My God, I sound like a complete physical wreck ..... bring on the bath chair .... or shoot me or something ... !! Catch up with you again son, Mags xx

Hi there Sarah Lou, Interesting...very interesting .... My hubby also has occasional neck crick issues since he had menigitis. I'm guessing its one of those head trauma legacy things, but I don't know that. I'm not going to make the Feb support meeting as hope to be in South Africa and riding the Cape Argus cycle race. We do this every year (this one will be my 9th, I think), and I'm blowed if I'm going to let a SAH stop me doing it ! That said, I have a feeling it may be a little bit different because I am not certain yet of how well I will be able to push myself through the tiredness towards the end of the race, but we gotta get on with our lives, eh ? The other Sarah (the new lady), I was speaking to at the last Support meeting, also had the neck/shoulder crick which got worse as she got more tired. Have you heard anything from her ? I haven't heard or seen anything through the various websites. I hope she's doing OK. You coping OK with getting yourselves sorted for Christmas ? Sandi K is quite right, it really does add an extra level of "stuff" which makes all the regular things harder to manage. Take care, Mags xx

I'm starting this new posting to try to find others who have had strange neurological things happen to them since they had their SAH. PERSISTENT NECK/SHOULDER CRICKhad their SAH. In my case, I've had a persistent neck & should crick on the left hand side. I think my SAH was on the left. When I am fatigued/stressed the crick is undoubtedly worse, and my head is usually aching a bit then, too - nothing like the SAh headache but certainly there. Occasionally when I am feeling really good and relaxed, it goes away. It feels like I need a really good massage to ease it away. I've met one other person (another NASAH) who has experienced this. Anyone else experienced this - and did it ease off over time ? PATCHY TINGLING DOWN AN ARM Just recently I've started to get a very odd tingling in certain patches down my left arm. Its not pins and needles, but something less intense than that. Now I know I'm not about to have a heart attack - its not that kind of feeling. It occurs mainly when I am sitting down but very occassionally when I am standing. Its most odd. I guess its a little like the odd tingles I used to get in my head. Any one else had this, and has it ever gone away ? PINS and NEEDLES IN FINGERS WHEN LAYING ON SIDE IN BED Since SAH, I seem to invariably wake up with pins and needles in my fingers (this is on both hands). It mostly affects, my first two fingers, and thumb. If I lay on my back I'm fine but if I lay on either side this is what happens sooner or later. I can't think of any other reason why this happens and as I said, its only started since the SAH. ACCENTUATED SENSITIVITY TO CERTAIN FOODS or ALCOHOL I now find that I am more sensitive to foods to which gave me a bit of a headache before SAH - things like milk and cheese. The headache they induce now is more intense than before my SAH - so I don't get tempted by them anymore, whereas before, there were certain cheeses which I might nibble during the evening, so I could sleep off any headache over night. As for alcohol, I can't touch it without a mega hangover for the most tiny and diluted amount, so I'm on the lime and soda for the foreseeable future, and I can only dream of a nice cool beer ! If you've had (or still have) any of these or any other odd "symptoms" (I can't think of another word for them), then let us know. Cheers, Mags

Hello All, Well, I've logged on to have a little break from work. I really am struggling with concentrating on any task for very long at the moment. Its very frustrating and bothering me more and more, but I also sense this is an aspect of accumulating fatigue. That combined with the "fog brain" that descends, helps me to remember that I am probably not quite as better as sometimes I may appear !! This is a completely unrelated question, but has anyone reading this suffered from their body thermostat having gone a bit wonky since SAH ? Pretty much everytime I eat, or have a hot drink, I suddenly get very hot, then I cool back down to normal again. Its a sort of hot flush but somehow not the menopausal thing. More like the body figures it has got fuel to burn and then goes mad burning it for a few minutes until it calms back down again. Its driving me nuts at times ! Tomorrow is my first session with a CBT Specialist. Occupational Health thought it would be a good idea, and maybe it will help. I'm just worried that I start relatively sane and come out with "issues" . I'll post my thought on a new string as that gets going. I hope I haven't moved to work too much, too soon, but I think only time will tell. Luckily I seem to have very supportive management, although like I've seen others express, there is a sense of guilt that you can't pull your full weight, and a nagging worry that very soon they will expect you to be normal some time quite soon. Sandi - I can absolutely relate to the things you say about Christmas stuff adding too much too the mix of stuff you can handle right now. I've been thinking much the same thing. My poor hubby has been on the end of me issuing my "commands" - I've found since SAH that I can't be bothered with quite the same level of nicities. I am very polite (sometimes I think I'm overdoiing the politeness) but I have become very direct in what I say, so there is no doubt what I mean. I feel sure this may get me into trouble at some point ! I guess if we think of our lives in terms of the Spoon Story, then it sort of figures why Christmas is adding another stress which makes what we can handle more of a challenge. We're using the old grey matter thinking about the many logistics and extra things we have to get done for Christmas. Even the social occassions, I find I have to limit - and thankfully this year, I've been able to avoid most of the round of Christmas parties. However, a friend has invited several of us for supper on Christmas Eve, which is very nice. Now I find there's another bunch of people who are doing a drinks party beforehand which we are all expected at, and I'm thinking "I just can't handle all this". One or the other, fine, but both ...... aghhhhhh. I know that its only people of this support group who will understand what I mean. Whereas some of our social group clearly think I'm rather anti-social, because all they see is that from the outside I look absolutely fine. Ok - back to work. Take care everyone, and enjoy getting ready for Christmas ... only 6 days to go. Mags xx

Hi Sandi, The therapy sounds like its really trying to get you tuned in to protecting you from yourself - rather than others reminding (I'm guessing forcing is the right word, sometimes )you to take a break. That has to be the right approach, but I'm still at the stage where I feel like I have to push things just a little bit more each week. This is my 4th week back at work. Had a couple of long days last week, and then this week was away for 3 days. Overall I've coped well but have to accept that I need the day after to recover and I need to make sure that I am in good shape before embarking on these things. If nothing else I have at least grasped something of the concept of managing my spoons. But isn't it so damned frustrating that you can't live life as you used to ? Last week was the first time I had seen my work colleagues since SAH. I was touched how those I consider know me well seemed truly concerned and pleased to see me looking so well (that's all the daily walks along the sea front for many weeks!) However, there were others who would not look me in the eye, and still others I caught giving me a rather sideways look trying to see if perhaps there was something they could see ... some scar ... or some other physical sign. Thanks to this website, I was at least prepared for these very mixed reactions ! Have you found that you've got progressively more fatigued as the weeks back at work have gone on ? This is something which I am starting to consider. From the outside I look and seem pretty good, so a real danger that people believe you to be back to normal, but the hours are building up and I expect in the new year there will be more pressure (probably from me as much as anyone !) to expand the number of things I engage in at work. That's when I'm expecting rather more of a problem with accumulated fatigue. Its not easy to admit when you can't cope - least of all to yourself. And I can see from what you have written that you are craving normality (a sort of pre-sah) just as I know I do, and then get quite frustrated when the brain refuses to play that game. I start at a therapist next week. It remains to see if she is able to turn me into a well adjusted human being (was I ever before ?????), at peace with the world and my condition ! I'll make some postings over the next weeks on what I learn along the way. Thanks for letting us know about your experience. Keep those updates coming, although I know I've found it much harder to take the time to get on Behind the Gray since I started back at work. Go well and good luck, Mags

Hi there Sandi, Thought I'd look in on you and see how things were progressing. You postings on going back to work have been so helpful to me, as I've mentioned before. Its been at least 6 weeks since I was last in touch. I went away for 4 weeks holiday to South Africa (I used to live and work there) and then came back to start back to work - part time, building up. I've just reported my first "real" working day experience on Rachael's Back to Work Posting for NASAH folks (yes, thats me). Wasn't so bad, and I think I coped quite well, but I'm with you when it comes to brain overload - only peace and quiet really helps. During my recovery I have built up long walks and these have been a "life saver", not only getting me fit again (I'm walking fast !) but providing quiet time with just the breeze for company, and providing a welcome interlude for the brain. Right now I am still working only part time and still trying to fit in at least a 90 minute walk in. But winter is coming, the days are getting shorter and my hours are going to increase, so its going to require a lot of discipline to keep the walking going, and yet I know I have to, to provide that "brain space". I am also working a a really restricted set of activities at work, and that has really helped. I know that if I was to try and load up my brain with all that I used to juggle pre-SAH, I would really not feel good. It can make me feel almost giddy if that starts happening, and I loose concentration completely. I'm guessing that's a pretty common experience ? I hope my ability to handle lots of stuff at once will build up as times goes on - it has improved already. I guess we all know that we'll never be exactly like we were before SAH for a whole pile of reasons, but its not easy to accept. Anyway please keep those updates coming. We're all with you. Warmest, Mags

Hi there Rachael, Like you I have just started back to work, and its is a kind of strange experience. You do feel disconnected somehow at first, although I found I was quite keen. I guess there was a part of me which saw going back to work as meaning things were sort of "pre-SAH". Sort of symbolic of being back to normal (even though I know I'm not actually at that place yet) This is my third week back (part time, hours building up) and today was my first time going up to London and doing a business meeting. That is working away from home. (Oddly enough, it turned out that the person I met's Dad had SAH when he was 21 - he has an enormous scar on his head, because repair techniques clearly weren't quite where they are today.) The trip went very well, except for coming back on the train which was quite busy despite being well before the rush hour. There was a group of two Mums and their teenage daughters - just chat, chat chatting and one daughter was a real chatterbox and fidget, constantly moving. It took all my self restraint not to tell them to shut up and stop fidgetting - and they weren't even talking particularly loudly ! I was finding it hard to deal with all that movement and noise, when all I wanted was to rest my brain for an hour or so. Anyway I made it without resorting to verbal or physical abuse ( ), and although my head aches and tingles a bit now, it just added another experience to the list of things to be dealt with. I can't even imagine how Gill deals with 13 kids. Even before SAH, I think I may have been forced to lthe brink of at least a tiny bit of GBH, if not actual murder - I found lots of kids wearing before, now I would do everything in my power to avoid that situation. I know I'm not ready to cope with that level of sensory stimulation. I'm not sure what you mean about a wooshing noise in the ears. I used to have that before SAH, then it went away after SAH, but recently it has come back a bit. I think mine has something to do with hearing the blood surge through the carotid artery (the one that runs up the side of your neck). I wonder if I didn't have it after SAH until now, because I lost a little weight. Maybe I'm gaining some back now so there's more flab pressing on my neck again ! Anyway, not sure if yours could have a similar cause ? I haven't been in to the office yet, but I'm sure, like you, when I do, I will tire very quickly of people asking me all about it and probably slyly looking at me trying to spot something different, like some strange twitch, deformity or scar or something. Hang on in there. We are all here on Behind the Gray to support each other, and compare notes. You are never alone - it always seems there is someone out there who had a similar experience and who understands. Kindest, Mags

What an interesting thread... I've been getting what I suppose should be described as hot flushes since SAH. Having come back from the Kalahari, I know that I can cope with extreme heat - provided I am outside. My problem seems to be when I am inside. I wake up several times a night feeling overly warm. I look at my hubby and he'll usually curled up in the duvet soundly sleeping while I'm baking. Throughout the day, I find that as soon as I start to get warm, I go from comfortable to baking hot in a very short period of time. I'm forever taking jumpers on and off. Very annoying. Its only been this way since SAH. It could be hormonal (yeah, I'm that sort of age ) but strange that its only started since SAH, so will be interested in anyone else who thinks their internal thermostat went wonky the day their head blew up. Try and keep smiling all. At least we are still here to tell the tale ! Mags xx

Hi Ryan, Welcome to the site. I had my NASAH two months ago now, so its still pretty early days. Some days I feel so good that I can almost forget that it happened for a moment or two, then I get tempted to take on too much and end up overdoing it and spending the following day feeling tired. SandiK says a lot of good things in the Going back to Work thread she started back in August - so if you haven't gone there yet give it a read. One of the things I still struggle with, despite otherwise fantastic recovery, is the fatigue which being in a busy sensory environment gives. For example, we belong to a sailing club, and on Friday evenings we go down for "happy hour" (although I'm still on the lime & soda !). In the Clubhouse there can be lots of people, lots of noise from people talking, and lots of visual stimulation (lights, movement). I can last about 2 hours in this environment and then only if I'm not in the thick of it. Interestingly, almost as soon as I remove myself and go outside (and after a couple of hours go home !), the headache and the strange sense of being overwhelmed goes away. My tolerance is gradually improving but that's by far the element of my recovery which is the slowest to improve. I'm sure some people think I'm just putting it on, being a wimp and being just plain anti-social because I otherwise look so well. Are you back at work yet, Ryan ? If yes, then let us know about your journey & experiences. I've found this site extremely supportive and I hope that you do too. Take care, Mags

Hi there Sandi, Once again, its been quite a few days since I was on BTH, so I've checked in to seew how your journey is going. Over this last week or so, I've been in conversation with work and we now have a "Back to Work" Plan. I just hope that it goes to plan ! I'm already worrying (in a mild way) about what it will be like. I can accept that I need to go back on "light" duties but I do fear be side lined or overlooked - or worst still molly coddled ! I know exactly what you mean about overdoing it. I think I've done so very well on my recovery, and it really is the good days when you push yourself that bit too far, isn't it ? Yesterday, I made it back to the gym for the first time in 2.5 months. I was a bit nervous - not about the exercise, but more about whether I could cope with the music in the gym - especially if it was a bit on the loud side. But I need not have worried. The music was at normal levels and whilst I didn't feel especially invigorated when I left the gym, I did feel sooo much better as the afternoon went on. But today I was a bit more tired than usual. I went to go for a walk and got caught in the rain. Maybe that was a good thing, because it cut the walk short and made me rest ! Gotta break off and have supper now - cooked by my luvly hubby. Keep up the good work and keep us all posted on your progress. I'll do the same when I go back. Take Care, Mags x

Hi Sandi, I've just caught up on this thread again after a break of a few days. On Weds, I have to go back to the Doc for another "sick note" for work. Reading your posting is really helping me realise that I must take it easy in getting back to work. So I expect we'll go for another month - then I'm on holiday (hurrah !!) so I'll have to find out if I should have another one while I'm away (although I think being on holiday is certainly NOT being off sick in UK employment law terms). One of the Managers at work, I remember said something to me about that, quite early on. Something about being very sure to make it very clear when you're on holiday. When you talk about what's happening to you when you've perhaps pushed yourself too hard, this is so helpful. Its such a fine balance, isn't it ? Pushing yourself just that little bit more, to increase "stamina" (and find out if you can manage a tiny bit more) but then perhaps doing something too intense which seems to tip you over into days of tiredness and sub-optimal functioning. And I guess, as well, its so difficult to know if you're having a bad SAH day, or if its just a "normal" off day. I know before SAH I used to have days when I was tired and certainly not functioning as well as I'd like. Not so often, but they happened. Keep on posting your progress - its so helpful to us all. Know that we are all wishing you well and thinking good things for you. Take care, Mags x

Thanks to everyone who has taken the trouble to reply to the string I started. It's been very encouraging and just reminded me that I really do need to be patient ! I saw quite rapid improvements over the first couple of weeks back at home but although still improving (and finding out just how easy it is to "overdo" things etc !) things have slowed down. A friend's Mum popped round this morning (she's an retired physio) and put it all into perspective. She said when you're only at 50% then a 5 or 10% improvement is quite a lot but when you're further up the recovery scale then that percentage improvement just doesn't seem as dramatic. And she is right ! JellyB - I am so encouraged by what you have told me. I have not yet got on my bike - this damn wind would make that a miserable experience even if I was a 100%, let alone now. However, if we get a quiet day, I might get the mountain bike out and have a sedate amble along the seafront here at Hayling and see how I go. I'm getting out for a good long walk every day (yes, even in this strong wind) and am up to about 1.5 hours now. I can honestly say that it is quite hard to do it every day but I feel so much better for getting out there in the fresh air and feeling like at least some of my muscles are getting worked. I tried a short run last week when I got caught in the rain - I decided BAD idea and decided to get wet instead, so that's still a little challeneg out there and maybe I'll try it again in another week or two's time. I'd love to try the gym (only gentle stuff) but I haven't heard from DVLA yet so driving is still out for me, and my gym is too distant to walk or bus it. I've been off the paracetamol during the day for the last few days and although the headache does come and go abit, it is copable with. But I have been taking it when I go to bed. Last night I decided to find out what would happen if I didn't take it - would I be OK. Another BAD idea. I woke this morning feeling heady and a bit nauseous. I took paracetamol when I woke up, and I will definately be taking some when I go to bed tonight. I think I leave it a little while before I try "cold turkey" again ! Occupational Health really are forcing me to take it slowly, so that is really a great help. I just know I'd be pushing much harder to get back and then like Sandi K I'd end up over doing it. Its a fine balance isn't it, between getting a bit bored being at home (although I really don't know where the days are going) and jumping back into the fray a bit too soon and watching your wheels wobble off. Warmest wishes to you all, and keep posting your experiences - they really help. Mags xx