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