I've got the usual fatigue Ive read about it I've also got cervical dystonia to so being out for too long around too many people gets my head / brain a bit overstimulated !
Work are being are supportive and all the projects I was involved with have been put on hold.
I realise I'm very lucky that mine was non aneurysmal SAH but I'm still having a hard time explaining to people why I'm a bit slow and can't get around so fast. Because there's no obvious outward sign that any things wrong I'm getting very annoyed, infact I'm quite angry ! Have also been wandering around my home with earplugs in as my hearing is very sensitive ! Anyone else have / having similar experience ? I just need to let off steam in here. I used to operate at 100mph so now feeling bit frustrated that I get over tired AND so so hard to just do nothing, an imposed 'do nothing' is hard !
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heyjo
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Yes to all of that and understand how you feel about people being baffled by your behaviour when you look so well. Yesterday was sunny so my partner took me out for the day. In an unfamiliar pub (which was really dark) we had a cup of tea. Getting up to leave I was decidedly unsteady and put my hands out a little as I always do to make sure I didn't sway or tip over. The light as we approached the door was too bright, and it was hard to see so I walked s'more slowly. Some afternoon drinkers raised their eyebrows as I passed. To others it probably looked like I'd had a few too many beers with lunch instead of tea and biscuits.....I don't even know why it bothers me, I'll never see those people again. It's silly - but strange looks still get to me. When you have to deal with people and you know you're not acting like your normal way of being, it's totally frustrating. Steep learning curve.
Ah thanks for that Elenor3 ! I always try to make light of tricky situations ! The woman in my local coffee shop who turns out to have been a homeopath mentions I better watch my coffee intake ! I thought my initial 'thunderclap' headache was toommuch coffee lol ! I'm a bit sensitive to at moment and sister jus snapped 'it's only been 5 days since we last chatted' as I got used to speaking on a daily basis.
My sympathies Heyjo. Those feelings of intense irritation have become part of daily life for me which makes me sad because I had endless patience before the SAH. I used to do loads of DIY projects and even if I made a stupid mistake, which meant loads of back-tracking, I'd just shake my head and smile.
Now the tiniest thing, such as catching a thread on clothing or spilling my tea sends me into near meltdown. And other people's noise drives me mad (mine's fine !). Even people chatting in a hospital waiting room is enough to send me skulking off to a corridor 'cause I can't stand the sound of their chit chat....................
And TV ads have me swearing at them if I can't get to the mute button fast enough ; my pal tells me I'd be brilliant on the 'Grumpy old Women' programme !
So you're not alone, if that's any consolation Heyjo. xx
I imagine it will be brilliant Heyjo. So long as your coordination is up to scratch it should be a massive boost to your confidence.
We all strive to 'get back to normal' but rarely achieve that goal, so to go back to making music has got to be quite a challenge. I hope you'll come back soon to tell us it's a great success !
And I think I mentioned that it's only other people's noise which is a problem for me ; hope the same applies to you.
What's your position in the band .................... and what's the name of it ? x
Oh yes that's fine Heyjo. I used to love singing and rehearsed with two guitarists singing folk. I think we were really good together 'til I allowed a jealous boyfriend to intervene and put a stop to it !
Hope it works out well for you & you can take up where you left off. x
Hi, I’m in a band too! I basically teach play and direct music - all self employed so I had to go back to work pretty much straight away. I use in ear monitoring which I can’t recommend enough. It doesn’t have to be expensive and will block out the noise.
I have to say though. I’m really really struggling with the exhaustion and hit a wall this week. I had my non aneurismal SAH 7 weeks ago today x
I still get fatigued and nod off in the evening which I never did before ! However it has significantly improved but my mood swings are terrible specially if we're trying construct a song from a jam. However maybe that's jus my control issues !
Hi cat I'm new on here and have an unruptured BA at 3mm so small at the moment but I have noticed that from having the patients of a saint I now get irritated by the smallest of noises someone's laugh or tapping at the keyboard even my partner eating I get so enraged I also keep getting bouts of tinnitus that drive me insane and my migraines are back with a vengeance could all this be related to my BA do you think? Or am I just getting old lol
Sorry Bonnie........with your reply being attached to Heyjo's I didn't get an alert so I'm very late in replying !
Yes, these irritations will almost certainly have been a result of your BI ; many others apart from myself complain of similar 'rage'.
It's so difficult when it's someone you live with as they think they're being criticised. But it's a fine line between asking nicely for them to stop and going into meltdown !
It's a daily challenge for most of us and many here have taken to wearing headphones or earplugs to block out unwanted sounds. That can also block out the tinnitus if you're playing music through headphones..
Hi heyjo, as with the others I totally relate to what you are saying, the transition from 100mph life in the fast lane type character to life bost sah is a lot to get your head around! I put a website together to try and help others understand the process, you might find it of interest, braininjuryftp.com
A great read and just the right amount to take in. I feel I'm resuming my life as before but something is very didferent.I was jus watching two wood pigeons pecking at the grass and thinking 'no stress'.My life before was anything other than that !
The occurance of my non aneurysmal SAH was pretty low key but the after effects have most definitely left me feeling 'bizarre' as you say !
All of the above, and then some... I recognise now that I pushed myself too far, too fast, but what's done is done, and now I just have to move forward, perhaps at a less intense pace.
'Looking normal', yep, nobody can see the scar from my emergency surgery because of the way I part my hair, and NOBODY can see the scars from the two rounds of endovascular coiling, because they're in my underpants-zone. Nobody 'got' that the noise they were making, whilst normal to them, was nails-on-a-blackboard to me, or that I could smell their make-up from the other side of the room. I'm relatively certain nobody else in the office even noticed the constant blue-blinky light in the ceiling that's part of the fire-alarm/emergency lighting system, and I'm fairly certain that none of them have constant visual disturbance. (My life now looks like it would in a mirror that had just been tapped, constant distortion, with occasional disco-lighting, just for fun.)
There's work to be done on communicating with employers about Brain Injuries, but 'we' aren't a one-size-fits-all group, we all adapt differently. I tried to be tongue-in-cheek about it, because the 'If the third aneurysm ruptures, it will kill me' angle is too hard for most people, but I think, in hindsight, that ME 'brushing off' how ill I had been, and how ill I still was, might have been part of the problem. It's a learning curve.
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and understand how you feel about people being baffled by your behaviour when you look so well. Yesterday was sunny so my partner took me out for the day. In an unfamiliar pub (which was really dark) we had a cup of tea. Getting up to leave I was decidedly unsteady and put my hands out a little as I always do to make sure I didn't sway or tip over. The light as we approached the door was too bright, and it was hard to see so I walked s'more slowly. Some afternoon drinkers raised their eyebrows as I passed. To others it probably looked like I'd had a few too many beers with lunch instead of tea and biscuits.....I don't even know why it bothers me, I'll never see those people again. It's silly - but strange looks still get to me. When you have to deal with people and you know you're not acting like your normal way of being, it's totally frustrating. Steep learning curve. 
12 months today 
SAH moods
Confused newbie
Struggling to keep it together sometimes...
A lonely place 
