ElaineJ

yes, i also tend to push myself but not intentionally. These days it's hard to recognise when is 'enough' as my body doesnt give me the feedback needed in time like it used to (ie. 'stop what you're doing now or or you'll regret it later') Like you Dawn I usually feel better when I'm doing something but I always feel the consequences afterwards-when its too late. I suppose its the same as drinking alcohol -a drunk will tell you its not the drinking that gives you the hangover its the stopping drinking !. But that's no excuse to just keep on drinking ! Sooner or later you have to stop and then it catches up with you. If I feel really rubbish and I cant do something I can accept that but its when I feel really good and know I have the ability to do normal stuff but I have to make that choice to pace/limit myself -that's what really frustrates me. Elaine X

thanks for the welcome mary, it was just what I needed -you must have read my mind! Having been looking in on the site for 2 years I felt I knew all the BTG regulars in the way you feel you' know' characters from TV shows so when i started joining in I felt a bit surprised that I wasn't acknowledged by them. But of course that's nonsense I'm just a stranger from cyberspace to you all!. Hoping to contribute a lot more now and give back some of the support that I've found during my recovery. Thanks again

Hi Kris hope you're feeling better today. You always have wise words for others -just the right balance of science and spirituality. You have a lot of insight and awareness of your condition and your responses to it and that's great. I can only comment on my own journey and have noted the following. Having always believed in being armed and prepared with knowledge is always the best course of action I did many, many hours of research on SAH, and thinking and drawing conclusions and planning my own recovery plan. I think it helped in the short term but then somewhere along the line it actually worked against me (I basically did too much thinking) and set up a cycle of stress/anxiety which made all symptoms worse. I had the crying thing in the first few months -it would seem to come out of nowhere and was unstoppable but when I stopped crying I could always look back and see how an extra busy/ stressful period had crept up on me and I reckoned the tears must have been the build up 'overflowing'. Not much use when you're in the middle of a sob session though! You seem a much more laid back person than me and if anybody is able to 'go with the flow' I reckon it's you so the above is probably not relevant to you! I also found making up analogies useful in giving some sort of narrative to all the randomness that seemed to be happening to me which kinda made me feel a bit less helpless in this mad new world I have found myself in. I'll post them elsewhere in case it may help any others. All the best Elaine

Wondering if anyone else experiences these? I actually came across the term Brain Zaps on a post on this site in relation to another topic–, and I thought ‘if ever there was a term to describe what goes on in my head it’s that!’ Since SAH, as I’m relaxing into sleep, I get an intense ‘pulse’ of energy like my brain having a sudden powerful contraction in my head and an accompanying loud noise like the sound of a speeding car whizzing past (nyeeeeow….. that sort of thing!). It only lasts a second, and it’s not like the hypnic jerks you can get when you first doze off, because I’m fully awake –just very relaxed. It frightened the life out of me when it first used to happen but it’s less intense now –although if I’ve had a busy/noisy day it will be more intense and there may be more than one. I’ve never mentioned it to the docs as I had much bigger problems in the beginning and now I’m just used to it (also too embarrassed to do the speeding car impression in front of doc!) I did a bit of research and the only thing I can come up with on the internet re Brain zaps is SSRI discontinuation syndrome –but I’ve never taken any SSRI’s or any other anti depressant. It’s also not tinnitus –as I have various tinnitus type noises in my head , which escalate according to how much mental activity I do throughout the day. These brain zaps are really specific to the relaxed state before sleep. Just interested to see if anyone else gets them or knows why they might happen? Elaine

Hi David I can honestly say I've never gone through the 'why me?' stage and even after 2 years it still hasn't really hit me that this thing has happened (mega deep denial possibly!). However it was about the 2 month mark that I really hit a wall with severe mental and physical fatigue symptoms (although I didn't actually know that's what they were then)and ended up back in hospital. Even if my conscious brain hadn't registered that this momentous event had happened I think that was my unconscious brain telling me in no certain terms! Elaine

Hi Lynne I was signposted to this course as well but didn’t take it up but may think about it now. As with much of the recovery process everything is so much clearer in retrospect. I absolutely did not think I was anxious (I really hate that word-it sounds so pathetic !) so I couldn’t see that it would benefit. I had read in loads of places including this forum that anxiety was a common outcome after SAH but I still didn’t recognize it in myself. I recognise, however, that I've always been a ‘stressed’ person but I actually saw this as a positive thing pre SAH (!) as it was a measure of my attempts to control things in my life. In trying to control my recovery and the various fatigue symptoms I think unleashed a whole load more anxiety. With the benefit of hindsight, and a lot of reading and research, I can see that both pre and post SAH, anxiety has been a major factor in my life. It has absolutely made my recovery slower and more difficult and I am making progress in doing something about it –not least identifying and admitting the problem. But some of the anxiety must be so long standing and deep rooted because I cant even consciously feel it, yet I know its there. What on earth do I do about that I wonder? I seem to remember reading something along the lines of –outcomes for people who were very stressed prior to SAH are not as good as those who had been less stressed. Thinking about it now I wonder if that meant that those kinds of people were more likely to be stressed post SAH ? Elaine

Hi Wem I can totally identify with this cycle. I did way too much when I first came out of hospital and ended up being readmitted at about 10 weeks post SAH with very frightening symptoms. Nothing was found, but the complete loss of control I felt set off PTSD. At 5 months I was referred to a neuropsychologist and I now understand that I have problems with attention and concentration, slowed speed of information processing and multi tasking. The 'unknown enemy' was suddenly made apparent to me - up until then I couldnt work out what was wrong with me and why certain things (even watching tv) were so difficult, and it was very scary. Armed with this new knowledge I did loads of research and set about trying to measure and monitor every aspect of my activities and the environment so I could gain some control over the situation. I thought this would help me to pace myself better as the thought of hitting that wall again was terrifying. However I now think it had the opposite effect as I was so focussed on measuring my mental activity every minute of every day that I set myself up for some very deep seated anxiety. It’s also much harder to measure cognitive effort than physical effort as there are so many variables On the surface I thought I was ok (and if anyone had dared to suggest I was anxious I think I would have punched them!) I was even proud of myself for taking control. It’s meant a much quieter life, retiring from work, rarely socialising, very little shopping etc. Basically limiting any activities where I’m outside the home and cant ‘control’ the environment. Anyway I've noticed over the past few months that throughout the day, even though I'm feeling perfectly fine, when I think about how much I've done or need to do, or if I notice that I've watched more TV than usual etc I often get a tiny little knot in my stomach. It passes in seconds but I've finally recognised this as a sign of anxiety -adrenaline being released into the system. As this happens many times a day I've realised that my body must be absolutely flooded with adrenaline which in turn makes the fatigue symptoms that I get, worse than they need to be. It's been a bit of a Eureka moment and since I decided to 'let go' of some of the anxiety/ stress and give up trying to control absolutely everything I've been able to do a lot more. Well it's not quite as easy as that! Despite everything I’ve read and what I know and what I tell myself I still feel that knot sometimes throughout the day and I realise that there is some very deep seated stuff still there. I also think it was just the right time for me become less anxious-not something that can be forced. But for now I’m happy with my little bit of progress. Have just noticed how many times I’ve used ‘control’ in this post- I think that tells you something about the kind of person I am ..... and am trying to be less of! Elaine

Hi. I've been looking in on this site for the best part of 2 years now and thought it about time I introduce myself properly! I had my SAH in June 2011. Spent 2 weeks in Heath hospital Cardiff where I was coiled. Spent another 2 weeks at home on the settee with a pillow over my head, then I emerged and and decided I was all better ! I was determined (obsessively so) to get back driving and spent the next fortnight nagging doctors and chasing up DVLA. It was totally unclear as to whether I could/should drive but no one was saying a definite 'no' so at about 7 weeks post SAH that was what I did. I started driving, went shopping and tried to pretend nothing was wrong. Looking back I can see how ill I was but it didnt seem to register at the time. Until a few weeks later my brain more or less 'broke down'. Couldnt get words to form, could barely move etc. I just didnt understand what was happening or why I was admitted to the local hospital (non specialist)who couldnt find anything with me, although in retrospect I think it was probably extreme fatigue due to majorly overdoing it. However I didnt understand this at the time and the whole horrible experience caused PTSD. Coming back from the experience of this second hospital admission has been the hardest thing and only in the last couple of months have I realised the extent that anxiety has had to play on my recovery. (yes I know I read all about SAH and anxiety, but of course it absolutely did not apply to me!) I've been lucky to have been referred to a neuropsychologist as this has helped my understanding of the condition. Also researched as much as I was able and of course looking in on this site has helped enormously. Especially when I see posts from 'someone like me'. I look forward to contributing to discussions from now on rather than just looking in from the sidelines. Elaine

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