Diduck

So many of us worried that people think we are lazy Nobody who had suffered a broken leg or had a hip replacement would beat themselves up for turning down the challenge of running a marathon Well we run marathons with our brains everyday resulting in exhaustion but because nobody sees inside our heads we feel guilty for submitting to the overwhelming fatigue How bonkers are we??? We are our own worse enemies and need to own up to the problems instead of pretending we are the same as pre SAH Good to read everyones responses as if helps make the problems real Di

Hi I had my "event" just about same time as Jen and I have watched with interest her progress alongside mine. I still have many issues with fatigue and have to keep convincing myself I am not lazy. I work fulltime as a manager within a Council office and me work is complex and diverse. I find myself overwhelmed with information frequently and find the "grabbing" of my brain from many directions very very tiring and I come home exhausted most nights and sleep as soon as I have eaten the meal my husband has made for me. There are days when I go into work knowing I am already at capacity and I find it almost impossible to block out the other workers conversations to allow me to concentrate on my own work. I use earplugs to help and ask to be ignored as much as possible. Most times now I recognise the signs building and will take a day off or finish early but sometimes work committments dont allow and I push on knowing I am not really productive and that I will pay later!! The result of trying to push through this wall for me is lost of ability to find easy words, names, tripping, crying, sleepiness and just shutdown - like a mobilephone that has just run out of battery. And much like if your phones battery was running low you wouldnt start editing all your photos or checking websites I have learnt that most times when energy is running low I must concentrate on important things and dump the rest of it Also I still find very busy and noisy places unbelievably tiring. I was at a party last night where there was a loud disco and I was having to concentrate so hard to lip read and try to hear the conversations with people that I jus shut down after 2 hrs and we had to leave. I yawned all the way home!!!! Then went straight to bed. But the week earlier I was at another party where I was not required to make conversation so could just eat and drink and dance and I managed the whole night without any problem - up dancing and everything. The party last week was in a huge hall whereas last nights was claustraphobic with a low ceiling and the type of building has effected me before. So after my rambling I would say that the wall doesnt go but you will eventually find the door in the wall which you can go through but there will be times you will find the door locked and you cant find the key. Note to self keep the key on a chain round your neck and use it before you make yourself ill with fatigue. cheers Di NASAH 10/02/2010

Hi Simon Happy New Year and lets hope 2014 is a good year for you. You are early days yet as you will know when reading everyones posts so listen to your body and don't try to push through the fatigue to build up stamina as your body is probably doing a full marathon every day at present just trying to repair itself Take it easy and take care of yourself Di

hi win i occassionally get the smell of dog poo no one else smells it so i have accepted it is just me as i now find it happens when i am getting over tired i use it as a sign to slow down or just back off the work i am doing we all laugh at work when i suddenly say i can smell poo i have had smell disturbances ever since my sah as i remember i threw a new purse away not long after i came out of hospital because it smelt of fish i think our brain just distorts the smell di

This is a great thread to make you actually think about the things you have gained as well as lost Things I miss most: 1. Conversation- being able to hold a multi string conversation with a number of people. I can't hold concentration now so can't join in the same so sometomes just stay quite 2. Energy...limitless unending energy to keep going despite no sleep or mad parties! 3. Connection - I feel a little disconnected in many situations now and I can only say my mind feels a little like a burglar has been in and moved things around so it just feels "different" though nothing wa taken But to compensate for these I have gained: 1. Tolerance - I accept other peoples shortcomings and failures so much more now and they don't irritate me as they used to 2. Family and friends - although I had these before post SAH they are so much closer and mean so much more to me it is a stronger love now 3. Calm- the hurry and chasing has left the old me and I do not stress or feel panic as I used to. I think this may be my body's safety valve to protect me from another "head pop" All in all I am a different person but not necessarily worse and i am still learning ways to make the most of this Di NASAH 3 years ago now

Hi Mary I too still have problems like you. I have intolerance to noise as I find that at times I am unable to filter out the extra noise I do not want to hear. as an example I will be working trying to read an email or letter and I get distracted by girls giggling fu=rther down the office or the tick ticking of the printer or the beeping of the fax machine. I then put on my ear plugs or my headphones in an attempt to block this out to allow me to concentrate. The problem then is I feel like I am in a swimming pool with all the noise just muffled but still there so I have progressed to using a phone app which gives me a choice of sounds to listen to and I find birdsong and sometimes a stream or rainfall really relax my concentration and remove the other sounds that distrurb me. I do find the noise seems more of a problem when I am tired or overwhelmed by two many multitasking projects or jobs at once or if I feel pressured in any way. In the book Rebooting my Brain the author describes it really well saying stimuli overload is a problem and she illustrates it by saying her brain is like a nightclub with a bouncer at the door who checks who should come in and keeps order and calm so everyone can enjoy themselves in the club but since the sah the new bouncer is pretty rubbish and lets too many in at once so it gets very loud and messy in the club and pandamonium reigns. I often feel like I am in that club and just long for a bit of peace and quiet so it is the distractions that need removing where possible and I do this by using the headphones. It also has a bonus effect as my work colleagues nod knowingly when I use headphones or earplugs as they know that I am having a difficult day so they leave me alone more coz they know distrurbances are troubling me Sorry I waffled on a bit there but hope it helps to know others are still feeling the same. I believe you and I have similar disturbances following nasah and the light too still troubles me even though I am approaching 3 years post sah It must be down to where we bled though my bleed was never seen on scans only through lumbar puncture cheers Di xx

I'll join you on the treadmill David Been promising myself I would do half an hour a day but every morning I rush off to work and every night I come home shattered and fall asleep after eating I wil;l do half hour every morning this week before I showeer and go into work later As a bonus the later start may result in me not being as tired when I come home will l;et you know Friday if I have stook to this!!! Don't hold your breath though.......lol Di

Hi All I still find it vey difficult to find the words to descibe how I feel. If I say I am tired whoever I am speaking to usually retorts "yes,,,me to" I don't want to fully explain what I mean and how it is different from their tiredness because it would drain me too much thinking of the words to use to describe it!! So I just shut up and give a wry smile and think to myself"they have no idea!" Its the same with sensory overload working in an office with bright strip lighting, lots of noise like being in a swimming pool and then trying to concentrate on complex problems. All too much but people just think its whingeing to ask for a bit of quite of turn the lights lower.

Happy Birthday Andy....I am sure tghis is not how you intended celebrating it. So lovely to see you working hard to find as much information as you can to prepare to help your wife through this. Its early days yet but looks like they are looking after her well and will be givinh er drugs to prevent the vasspasm that can happen at this stage so dont worry. There are so many new words you will be hearing that you have never heard before and its difficult to compute it all to get the relevant facts together but you are doing the right thing checking here as you will get lots of advise and hear experiences that will help you and your wife. She is very lucky to have you there ready to help and I love your positive attitude that this could be a blessing in disguise to help you both realise the most important things ib life In fact you have just reminded me of that and I sometime selfishly push on without thinking about my husbands fears and needs. Thank you for helpng me and I hope we can all help you both All the best Di PS what is your wife's name??

David that is absolutely beautiful Without friends this journey of ours would be a tough old road....in fact its a tough old road anyway but the support we get from friends make the trip more bearable The close friends we live with can help support us by their actions and help But the distant friends spread around the world but pulled together by BTG are the emotional support and guidance we need so desperately One year aniversary is a milestone in your life David and you should celebrate it with pride and optimism for the next and the next love Di x

Hi Louise just wanted to let you know I have felt the same as you. I had my NASAH in Feb 2010 and felt just like you last Oct 2011 and decided I had to do something about it. I contacted Headway and they arranged for thecommunity neuro team to meet me. When they explained that what I was feeling was normal I learnt I bneeded to adapt by learning different copy strategies. I have learnt to compartment things and try to deal with things one at a time as multitasking made me lose my reason and panicked me with my sense of uselessness! I am still working on things but am getting better at it. I have had to learn to not only accept help but even ask for help which i would never have done prior to my headpop as i felt it was a sign of weakness. i realise it is not a good sign when i cannot find simple words like "tomorrow" or "photocvopy" saying today or photograph instead and when my husband mocks me for wrong words I know I am overtired. I started using a nintendo ds and found it really did help me to think a bit better. I used it every day I have now subscribed to a web thing "luminosity" which is same sort of thing. You can try it for free for a few days I also think the book I read recently "rebooting my brain" showed me that what I had felt was real and the same as other people only we all feel very isolated once discharged from hospital and nobody really helps us understand how to deal with things keep coming here Louise and you will understand that all your problems and worries are shared and you will be offered lots of reassurance and guidance keep your chin up Di

Hi Karen sorry but only just seen your message The email I got was the full info so there was nothing else to send you Afraid I didn't get time to join the call myself cheers Di

Further to this I wrote to maria Ross the author and thanked her for writing the book and explained to her about our group and how it had helped. she replied to my letter and has now invited me and all members of this group to participate in a conference chat on Wednesday evening please see details she sent me if you are interested: Hello Di, I hope you are doing well! Wanted to let you know about this: If you or others in the groups you belong to would like to ask questions about the book (or the writing of it) I'm running a free Author Chat conference call this Wed, July 11 from 11 am to 12 noon Pacific Time (7 pm your time in the UK). If you're interested in joining for some Behind the Scenes, I'd love it. Just RSVP to Janica@red-slice.com. Again, it's free, as part of my mission to educate and inspire with this book All my best, Maria

I have just finished the book today and I think it is wonderful The way Maria Ross recounts the experience giving her own and her family and friends experience is so touching and very very readable I am sure it will bring you to tears as you read it as there are so many insights she shares that only someone who had been through this could do. The way she explains the loss of self and the different ways we feel after SAH is refreshing and I have actually read parts out loud to my work colleagues as the author puts it into words in a way I have struggled to explain It is a definate recommendation and I am sure you will find it helpful and entertaining I should also say that this is the first book I have read since my SAH in Feb 2010. She writes it factually so I do not have to try to work out what she means and the chapters are short so it is eay to pick up and put down when distracted I will be reading sections of this over and over again to help me stay focused in my recovery Di

Hi Stephanie I had my SAH in February 2010 so I am a lot further down the road than you. I still get very emotional particularly when i am over tired having done too much or pushed too hard Before I used to worry about the tears thinking when am I going to get over this and be back to how I was Now I accept that the tears are a necessary way for my body and mind to get themselves in balance when I have not listened to the "fatigue imminent" warnings. I sometimes cry too just talking about things, particularly talking about me and how I feel as I always felt they were questioning and doubting my problems were genuine, but these episodes are reducing since I saw a neuropshycologist explained how normal this was and how I shouldn't beat myself up. She asked me a very simple question "Do you know you had a brain haemorrhage??" Of course I said I did so she said "so why are you feeling a fraud and thinking you should not have any issues?" She advised I should look at myself in the mirror everyday and tell myself"You've had a brain haemorrhage and just look how well you are doing and how strong you have been" or anything to tell myself how proud I actually am at the strength of character in getting through it all. Maybe you should try this too Stephanie But I understand what you mean about not feeling the same. I don't feel the same as I used too. My emotions are a lot flatter than before - I don't feel excited or look forward to outings, holidays seeing relatives etc But I also don't get the bad side - I don't feel guilt at not seeing relatives, i don't feel dissappointment at missing out on someting, or anxiety if I have an important meeting. I have learnt to accept that this is the way I am and don't compare pre SAH and now and I am learning to just keep moving forwards. But I must say I only realised this was the necessary course of action at 18 months on when I contacted Headway and they referred me to the community neuro team. Their input gave me the ability and reasoning to "Accept.......and move on". This has now become my motto hope you find lots of strength reading everyones experiences here as you see that we all share similarities and differences in how the SAH effected us but that we are all here together sharing our most inner thoughts with the only people who can truly know what we mean as they too have felt it. It will get better trust us Di x

I think Rebooting your brain is only on Kindle at the moment but will be in book form sometime in May

I too use earplugs but whilst at work i find it much easier to concentrate and less taxing and draining if I don't have to work so hard trying to block out the noise of work colleagues general chit chat I also find it helpful if my tolerance to noise is lower because I have had a worse nights sleep than normal and I am very tired I keep my earplugs at work and hadden thought of taking them other places with me but its a good tip cheers Di

NASAH 11 February xx

Wow - reading this thread today was just what I needed. I had my NASAH 21 months ago now and I have reached the stage of feeling lost an d desaperate to move on. Strangely I contacted Headway at the weekend to ask for help or advice as to whether I needed counselling or to see a neurophyscologist. I feel that I have been in denial trying to push my way through my lasting symptoms to prove nothing ever happened to me. Now, at this late stage, I have accepted I should get help to come to terms with things instead of beating myself up with constant fatigue from doing too much trying vto prove I am the same as before Making the first move to ask for help has been enormous but I am optomistic that it is the right move. I have printed the whole thread and I am taking it to work with me to keep lookng at to remind myself that I have had a brain haemorrhage and not just toothache or a bout of flu. I really appreciate your words, especially Bill B, whose words made me really think. I went back to work after 8 bweeks and have been full on since then. I have burntout a couple of times but now realise I was being silly and a bit selfish to my family to do this. I will let you know how I get on with Headway but I must say they have been brilliant so far with personal contact and reassurance. They are specialists in this area and understand much more than GPs who seem to think we should "get on with it" after discharge fvrom hospital. All the best to you all we are our own family here but I believe we share more with each other than with anyone else Di xx

So good to read all your comments Johntaras you have made me stop and look at myself again I work full time and find it hard to multitask or do things that require concentration bu it such a big part of my job I have found I can cope if I take things slowly and only do one thing at once without distracti9ons I often put earplugs in to help me concentrate and this does help But I am now 20 months since my NASAH so have now denied myself the luxury of still having problems.... how stupid is that I worked 11 hours on friday without even going for a break in the fresh air then I wonder why I am shattered when I get home Reading your post has reminded me of the importance of having breaks and I will start afresh next week resting when I feel overwhelmed instead of trying to work through it Thanks for thge reminder Di

Hi All I have been feeling especialy odd for the past couple of weeks and I put it down to the weather I have always been succeptible to moods swings in line with the moon cycle prior to my SAH I was always prone to tears with a new moon and bouts of irrational anger and temper at a full moon this past week or so i have felt my head has been verry "full" and a tight band round it especially at the temples. i have been more sleepy and less tolerent of sound so i have had to wear my earplugs more. i am also much more tearful than normal and cry just listening to the radio going to work I think the baromatic pressure impacts on my head and my head acts like a pressure cooker that builds up with impending storms. When it is hot and close outside I believe I feel it like people with rheumatism feel the rain or cold - I wish we could just have a good storm to clear the air Does that make sense to anyone else? Di

Hi and welcome you are indeed doing quitea lot so soon after your op I wasn't coiled infact was NASAH but I too could stand all the colours and words in a supermarket. The very very bright lights and the high stacked shelves made my brain cry out for peace and quiet and I found it really disturbing. My husband used to take me for little trips and gradually built the stamina and tolerance back up Six months later I was fine with it but when overtired I still have trouble with visual and aural overload On another point though have you had DVLA clearance to drive already/ I was months before they wrote and said I could drive again and that was after the neurosurgeon completed the paperwork. If you havent told DVLA be aware that you could void your insurance if you do have a bump and havent declared your SAH Sorry to be a merchant of doom but it is worth getting taxis or lifts off family and friends in the early days till all clear with DVLA all the best Di

Hi Ian I too am in local government and with all the cuts find the job is unfortunately getting more stressful however, I am like you that I am sure all the information, knowledge, experience is still in my head but as I tried to explain to my boss last week with an example whereas I had it all in a filing cabinet next to my desk before the SAH and I could access it all in seconds since the SAH someone has moved everything down into the basement storage area. This means it takes longer to get the info, I cant always find what I am looking for immediately, I get easily distracted by all the other stuff I forgot was there and carrying the boxes back upstairs tires me out so I need to sleep when I get home It is just harder than before and not due to my age All your comments have bucked me up no end and I will run up and down the stairs from the basement with renewed vigour. It might be hard but hell its worth it!!! xxx

Your replies have been really positive as always I can see I am not alone in hearing insensitive remarks and I will remember all your comments the next time someone says thry know how I feel We are special and will try my best to move forward with a sense of humour You are all superstars xx

Hi everyone I am feeling old - everyone keeps telling me I am old Before my SAH I was a very young 52 year old - endless energy, tireless zest for life, incredible self belief and confidence Now I feel vulnerable, unable to remember things as well, harder to concentrate so much that it tires me to the stage of switch off like a mobile phone when the battery runs out. My zest has gone and I doubt myself so much always thinking I have made a bad choice or said the wrong thing I find it very difficult to talk about how I feel since my SAH but if I do I am always told "oh yes you will forget things or feel tired etc as you are getting old!!" Noboby would ever have dared suggest I was old before the SAH but now people seem to think this is my problem - old age From a yound 52 year old to an old 53 with just one headache!!! So for all you out there the general concensus is we are old not damaged This doesnt reassure me as I try to stay hopeful that I will overcome these difficulties as I retrain my "damaged" brain but if I am just old I have no chance of improving unless I find a fountain of youth I really get upset as I feel peoples reactions means I am not explaining myself very well but then I just cry when I do try It is not their fault either as you could understand this feeling unless you had it and they just try to rel;ate it to things they know I think I will just go back to the "I am fine thanks" response Do you get the same reaction?? All the best to you all Di