Hello - must have been affected more than I thought!

[Sasbo]

Dur - have just posted for the first time ever on the SAH Discussion bit but realise now that was the wrong place - didn't see the introduce yourself postbox. Herewith what I wrote in SAH......

"Hello

I joined as a member a while ago, but haven't posted, and keep dipping in to have a browse around the site which has been really useful. It's only now (3 months + post SAH) that I feel I can, indeed want, to talk about it. Tried to post my story last night but not sure if it went through ok? There was a whizzing-around thing on the page that said 'thanks for the article' but story hasn't posted yet.....

Anyway, in a nutshell, it turns out I had my first bleed (although thought I'd trapped a nerve in my neck!) on Sept 21st, second bleed and hospitalised on Sept 25th. Taken first to Leighton Hospital in Crewe then transferred to N Staffs and operated on on Sept 28th but don't have much memory of that time as drifting in and out of sanity. Had SOMIC (keyhole) for burst aneurysm, with second aneurysm as yet untreated. I have my first post-op appointment back at N Staffs on Jan 23rd which seems to be much later than other people, from what I've read - is this usual? I did ring the hospital who said they had a note to call me back pre- Jan 30th. Anyway, still not back at work and am not planning to go back until at least after said appointment.

Really good to meet you all across the ether - listening in has been a great help over the last few months so thanks all."

Apologies for repetition and promise to try and get it together in future!

Sarah x

[Karen]

Welcome Sarah!

There are some great guy's on this site, that will give you any support that you need.

I was a little like yourself and with the first site that I joined, it took me about six months post SAH to post a message! That site was then closed down and as there wasn't any site specific to SAH, I decided to set one up.

At first I couldn't talk about my SAH, I didn't feel the need to either, but as time progressed and I wasn't recovering as fast as I thought I would, I needed to chat with others in the same boat and found it therapeutic to discover that I wasn't that only person to have problems. It's certainly does you the world of good to talk about things, just wish that I had done it earlier!

I will have a look to see whether I've got your story and if it's there, I will post it on the board.

Glad that you have found the board helpful in the last few months and will look forward to hearing more from you! The board is fairly quiet during the weekend, but weekdays it's quite lively! The Green Room is a good place to visit, where we just have a general chit chat about day to day stuff and it doesn't haven't to be SAH related. It's just good to have daily contact with others and have a chat!

Lovely to have you with us,

Love Karen x

[Sasbo]

Hi Karen

Thanks for getting back to me. Yes, I am now beginning to need to talk (although I think at home I talk a little too much about it! Verbal diarrhoea has been mentioned...... no, seriously, they've all been absolutely amazing). It's now a need to talk to others in the same boat. I've healed remarkably well to date but now it's that weird stage where people expect you, as you have apparently recovered so well, to be cured and it's "not so", you want to shout. I had a really up Christmas and New Year (which was jolly hard to maintain but somehow managed it) but am now feeling the pinch with tiredness setting in big-style mid-week and not letting up yet.

Anyway, enough waffle for now, although it really is good to be able to let it all out to like-minded survivors - thank you!

Sarah x

[Karen]

Sorry Sarah, forgot to say, that follow up care seems to vary, depending on where you've been treated and the type of bleed that you've had. Everybody here seems to have had scans/angio's at different times, so not sure whether it's a "postcode" lottery situation or whether it's because of individual circumstances.

Love K x

PS: Just about to check for your story, but if I haven't received it, I will let you know by posting.

[Karen]

Hi Sarah,

Sorry, but I didn't receive your story........hopefully you might have saved it?

If you want to try again under "submit Article" then please do so, or you can e-mail me if you prefer. My e-mail address is in the "Memberlist" at the top of the page.

Love K x

[Sasbo]

Hi Karen

Trying to post again now but the petals are still whirling round! How long should it take to upload normally?

Sarah

[Sasbo]

Hi Karen

Have e-mailed you my story as uploading doesn't seem to want to!

Sarah x

[rince]

Hi Sarah,

My name is Scott, and I too had a SAH back in 2003, and am still slowly recovering! I hope that you will be happy with all of us here in Karen's wonderful little world!

As being too talkative NO, you can only really grow by sharing, and sharing is one of the main reason that I've made the recovery that I have!

So whenever you have any question at all ask, because between all of us hear we can cover pretty much anything, if not we can always say no and go and find out!

Look forward to seeing more from you!

Scott

[Sasbo]

Hi Scott

Thanks for responding to my post.

This site really is a Godsend. There's nothing like listening to/reading real accounts as opposed to clinical data. And whilst no 2 of us are the same we will, no doubt, have undergone similar scenarios and symptoms.

It's amazing what other worlds open up and what people you meet when you least expect it!

How long was it before you returned to work? I'm currently at the 3 month stage and am thinking about it - reluctantly - as I don't feel mentally ready yet and still tire very easily. Multi-tasking hasn't figured very large in the past few months!

Sarah

[rince]

Sarah,

I still haven't returned to work, I do odd half days here and there for a local charity. But sadly I'm not capable of doing anything more than a four hour day, three times a week. Soon I'll find a way back, but that's the whole point, we have suffered one of the most devestating medical conditions that you can have. I am prone to silly mistakes, and my memory isn't perfect. So I don't think that I can ever return to anything like what I used to do. Hope springs and all that stuff ! Despite having got to the stage where if you met me you wouldn't think that I had any "problems" sadly those problems will expose me 60% of the time.

Scott

[Sasbo]

Hello again

Methinks you're another night owl!

That was my worry. I now look ok, not facially swollen or grey anything like as often as I was (constantly until recently!) and can hold a decent conversation. However, it takes supreme effort to hold that conversation so I try to avoid those situations. Also I can't write. I'm left handed and, whilst everything feels ok, once I try and use my left hand to write, put on mascara (guess you don't have that problem - or maybe you do and, hey, each to his own!!) etc. then I hit the deck. Even Kate Moss wouldn't look good with Revlon slashed across her cheek......

It just seems like everything I was good and confident at was taken away/damaged/covered up at the point of the SAH. Used to be able to multi-task (it's a woman thing....), be on top of my job, deal with all sorts of situations but not now. Hopefully it will come back but my big worry is that it won't come back as satisfactorily as I would like it. But then I think that I shouldn't be so ungrateful. I'm alive and you really can't get better than that. That work thing gets in the way of life anyway, and if it weren't for needing some money to live on there wouldn't be any decisions to make!

My work is based not too far from you, near Gerrards Cross, and our archivist lives in Fleet so I travel(led) over that way fairly frequently.

Sarah

[rince]

Sarah,

North Hampshire is God's choosen land, but we like to keep it quiet.........

Our own self esteem has taken a hell of a whack, and the very nature of SAH (speech, movement, cognitive) seems to be kicking us when we are down. You're only a newbie, and you can recover at huge variations from anybody else who's had essentially the same injury. I've known people who've got up and gone back to work almost immediatley, and then you have people like me who soon will be 4yrs post SAH and no real signs of getting gainful employment. It's a wide spread and you'll fit in somewhere in that spectrum. But don't get too fixated on returning to work, take it steadily and do not push yourself.

I hope that by this time next year you are back at work and look back on your year "out" as your lucky escape. But SAH is likely to be with you forever , don't want to sound negative, but we have had a brush with death and come through to tell our story!! My youngest son, Stephen now 10 but 7 when I has my SAH calls me "Brain Damaged" and I can just about live with that. Look around the people around you because some will need reassurance that you are really you, and a traumatic brain injury can scare those who thought they were close to you.

Rambling now so I'm going to stop typing..........

Scott

X.

[Sasbo]

Hi Scott

Please don't reply any more tonight as I know you're tired, but if I don't respond now then I'll forget what I wanted to say by tomorrow (and I know you'll understand that!).

My family have been, and continue to be, absolutely great but, you're right, no-one can possibly understand unless they've lived through it either as the patient or the immediate carer(s). My partner and my kids (23 and 21) are, I believe, hugely irreverent to one who has come out the other side and I'm still not sure if I really do owe my daughter £20,000!! As you say, you do have to laugh or else what's it all been about.

I'm really not sure yet what to do about work. I have a great job and work with lovely people who have been very understanding, particularly as, just before SAH, I took several weeks compassionate leave due to the sudden death of my Mum. But I've had a severe warning and I have a second aneurysm that I need to find out more about. The surgeon did mention it pre- and post- surgery but said we wouldn't discuss it until my forthcoming appointment.

Anyway, I too am calling it a night now. Thanks for your company and wisdom and hope to speak soon.

Sarah

[Guest Denise]

Hi Sarah,

Welcome to the board.

I am a newbie too. I am in NY, so I think I am online line when you guys are all asleep. I come on each night before I go to bed to read and post, it's great having others to share their stories and understand mine.

I had my SAH Oct 25th 2006.

When I was reading your posts, the one about the mascara got me. I remember the first morning in ICU I was trying so hard to draw my eyebrow on and a cleaning lady came in the room and my hand was shaking so much I couldn't do it, I asked her if she could help me. She said I looked fine and shouldn't be worried about makeup right then.

And when anyone would call and tell me they were coming to see me, I would warn them that I don't have makeup on. My son replied "neither do I".

To this day, it takes me longer to get my eyebrow and eyeliner on, sometimes I don't bother with the mascara if I've exhausted myself out getting the rest done and I'm only staying home anyway!

Well, I just thought I'd share that and I do look forward to reading your future posts.

Denise

[bogbrush]

Hi Sarah

I had SAH at the end of August last year and as I made quite a quick recovery, I returned to work on reduced hours after 3 and a half months. Even working only 5 hours per day made me very, tired, but I got through it and I am now working full time. I still get very tired, but I'm coping OK.

Remember that everyone is different in their recovery from SAH, so don't go back to work until you feel you are able to cope. Will your employer allow a phased return. i.e. shorter hours or less days per week to start with ?. I found it a bit of a shock going back to work, like taking a big step back in my recovery, so make sure that if you do return to work, you take it easy.

Regards

Keith

[Skippy]

Hi Sarah

I had my SAH at the end of August lsat year the same as Keith. I was on holiday for the first time in 6 years and then snap, crackle, pop - on the second to last day I ended up in Derriford Hospital, Devon.

Luckily my husband and I have our own company so the work issue for me has never really been a problem. I have a bed in my office so that I can lay down during the day when I get tired. I went back to work three weeks after my SAH as, like Keith (again) I#d made a 'remarkable' recovery - physically! Emotionally I was a wreck and for someone who used to be stubborn, head strong and quite hard faced I've turned into the total opposite. The hardest thing for me through this is coping with all these emotions that I have never experienced before in certain situations. Karen has the best advice for this - stop fighting it and accept who you've now become.

For my job I have to rely a lot on memory and pay attention to detail so the concentration part is quite demanding and thats when I find the headaches kick in.

This is your life and you have to take it at your pace now - I see the SAH as a warning to slow down and not do everything at break neck speed. It is hard to change 'the nature of the beast' as it were but your body will let you know when its not happy.

Karen and I have often said that we wish we had bandages around our heads and it would be even better if battered emotions were on show so that people would and could realise that we're still mending on the inside even if the outside looks OK.

This site has been a life line to me and my family and I am so thankful and grateful every day that I found it.

Sami xxx

[Sasbo]

Hi Guys

Thanks for reading and responding. You're right, I really should stop worrying about the work issue as there's not really any need to be worried. My boss (who's also the MD), personnel and all my colleagues have been, and continue to be, so on-side and supportive and don't want me back until I feel ready, my family don't want me to go back until I feel 100% ready and in some ways don't want me to go back at all, so there's only me doing the worrying and it is stubborn-ness that's causing it. My main worry is that it's psychological and that really I'm better and able to do things but am being either lazy or pathetic. Deep down I know it's not as when I do try to move forward something brings me up with a bump and i know that I'm not ready for whatever it might have been yet, or physically there're drawbacks. Just got to accept it.

I need to re-evaluate the work/life balance; we have discussed starting our own business and are fortunately in a position to do just that, but it's a big step. I also believe I'm worrying much more at the moment as my first neuro appointment is coming up soon and, having been left to my own devices since discharge (from a professional medical point that is) I really don't know what to expect or, indeed, what he will expect from me.

Ref mascara - I very rarely wear it too post-op, just on some occasions and the mascara on the cheek has become somewhat of a standing joke now! It's a challenge to avoid it and boy do I feel good when I can!

Thanks again everyone, it's such a relief to open up now.

Sarah xxx

ps - seem to have used the worry word a lot. I shall banish that emotion immediately as life is too short to worry. Silly thing is, that's what I'm always telling my kids so I should practice what I preach.........

[Karen]

Hi Sarah,

I think that you know in your heart if you're ready to go back to work. I didn't listen to myself and went back at 3 months post SAH ...... as you probably know from my other postings, I wasn't fit enough physically or mentally and I only lasted two hours. I near enough ran out of the building and can remember being in tears when I got in my car. I think that I sort of felt like you did and that I should have been able to return to work, as I read somewhere that most people returned to work at the 3 month stage!

Looking back, it's quite funny, think that I must have been having a loony moment when I made that decision! Oh well, 18 months on and I'm still not fit enough to return to work, mainly due to my eyesight problems.

I think that when you first start recovery from a SAH, you tend to think that everybody recovers at the same pace and you don't realise that recovery is such an individual thing and very dependant on how much damage that your brain has received.

Love K x