Jean - first post - almost a year on

[jeanhelen]

It seems unreasonable that I have already been off work for very nearly a whole year after "my brain burst" unexpectedly

The headline is that I am breathing, able to walk, talk, live at home, and -sometimes- feel very positive about the future.

The subtext is that I am still not "fixed", a relatively minor but constant source of concern to me.

Mostly I am unbelievably fortunate. I was driving in the outside lane of the M4 on my way to work on Monday July 25th 2011 when a large aneurysm ruptured and (as far as I know) I lost consciousness following an sudden and incredibly painful headache like nothing I had ever experienced. I felt/saw it as a huge yellow complex lightning show inside my head. One second I was happily driving to work thinking how good it was that traffic was light, it was sunny and that I would get to the office in time to catch up with emails etc before meetings and calls started. The next, the car was on the hard shoulder with the engine off. I felt very ill, almost like a baaad hangover, was sick, and eventually realised some woman was standing outside the car demanding I give her my keys. I wanted to just sit there till I felt better before probably driving home or back to my partner's place in London since I didn't feel well enough to cope with work. I asked her why she wanted them and she told me she was worried I might have "another seizure". What? What seizure? What was she talking about?

Please forgive my incoherence in this and probably any following posts. My memory of that time is a collection of snippets which are not necessarily in order and needed a fair amount of brute logic applied for me to make any sense from them.

Anyway: I gave her my keys; I think I was breathalysed (remembering being told I had to 'blow harder' so assume the police were called). I know I sent a text to my boss to tell him I wouldn't be coming to the office as I was being admitted to hospital. I remember someone in a uniform asking me if I had been sick. I was able to give them my name, talk some kind of sense, but the next memory is mostly being asked/told that they were taking me to Charing Cross Hospital. Paramedics with an ambulance then. I told someone, either them or someone in A&E my son's name and that his number was in my phone. After that, there are only tiny bits of memory until I became aware that I was in a hospital bed.

Stupid as it may sound, I did not realise that I had spent hours in an operating theatre, or how weak I was, or how unbelievably lucky. From my point of view, one or both of my son and my partner were there every time I 'woke up'. I was in the High Dependency Unit for several days, unaware of the times I had seizures, unaware that the left side of my body was totally unresponsive, unaware that my face looked as though I had tried a bout with Mike Tyson. I WAS aware that I had some kind of tube stuck in the nape of my neck, another up my nose, and of various (too many) tubes and drips. I was certainly aware of what seemed like a constant parade of nurses telling me to squeeze their hand, push or hold my feet or arms against them, asking if I knew where I was, the date, the year, over and over. All I wanted to do was sleep and go home when I woke up.

After 17 days, I was finally allowed to go home, still thinking I would then be "OK" and able to get back to work "soon", never imagining how close I came to dying, or how long it might take to even begin to feel "normal" again.

I found this site a long time ago, when I was desperate to understand what had happened to me and how long it might take to recover. For everyone reading this who is in the same place I was then I apologise for taking so long to post anything.

Two other links I found, and would recommend are

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ and

http://www.neurosurgicalatlas.com/index.php/video-conference-center/general-information-for-patients-with-brain-aneurysms/

I hope I am not breaking any rules by posting these links and that someone else may find them useful.

It's very late and I must go to bed THANK YOU to everyone who has shared their experiences and thoughts on these forums, it has helped me more than you may think

Jean

[Karen]

Hi Jean and a warm welcome!

How very scary to have had the SAH whilst driving on a motorway!

I'm glad that you've found the website helpful and support and communication with other SAH'ers does seem to help with the recovery process.

Thanks for sharing your story....xx

[Karen]

Just had a look at your profile notes Jean and can see that you had the SAH on July 25th 2011 ... Mine was July 25th also, but in 2005, a date that I shall never forget!

[Gill C]

Jean welcome to BTG & the family. You seem very coherent to me & make lots of sense to me.

I to was in for 17 days & had vasospams or siezures during the op, after the op on 3 occasions & had that drooped face & slurred words, with lots of fluid & gelofusin etc most of those effects have gone although I still have a slight weakness on my left it doesn't impact too much on me. Most of us will identify with being 'fixed' but not being as we used to be. I am 2 years down the line & am trying now to get to do some voluntary work to see how it goes & what I can offer to a paid job. I have complete respect & awe for anyone who works post SAH to be honest.

I think it was Lynne that said we learn to live life differntly, not worse just differently & in some ways better than we were before. Wise words indeed & worth keeping in mind.

Its a major thing we have been through & it takes so much adjusting to our new normal, glad we have helped you on here & if you need to know anything just shout.

Gill

xxx

[SarahLou]

Hi Jean,

Welcome to BTG, our lil family.

Thank you for sharing your story.

I was off work for 15 months after my SAH. I still only manage 3x 6hr days.

At times it's been tough, really tough, but the guys on here have always been a wealth of support.

Have you read 'a letter from your brain' on the home page, under inspiration? Well worth the read.

I still read it now and again, when I need a reminder on a few things and need grounding!

As others have said, its all about acceptance of who you are now, living your life a bit differently now, but still living it.

Take care, keep smiling and be kind to yourself.

SarahLou Xx

[jeanhelen]

Thanks for the messages, people, it helps me realise that I don't need to be isolated in terms of talking about the sometimes vague symptoms and problems I have. How odd that Karen and I share an anni-versary, and how reassuring that bagpuss had such a similar history to mine and is another of the "functioning survivors", a beacon of hope that I could have yearS to let myself stabilise and may well find the energy to be able to go back to work.

I did read the 'Letter from your brain' some time ago SarahLou, thanks for the reminder. I agree entirely that re-reading it also helps. Im a bit dented now, not broken, and there is the rest of time to improve even if slowly.

Sunny today every day has something good in it.

Jean

[Winb143]

Hello Jean..isn't it good to be alive..lol .....and to be able to say to Family how much they get on our nerves..nooo thats my humour !!

Too say to them how glad we are to be back and how sorry we are for what we put them through...Not our fault one bit !!!

Life is good and so is BTG Good luck on your continuing recovery .....keep smiling x

All the Best

WinB143 xx

[Louise]

Hi Jean, & warm welcome to the site, glad you found us.

I think we do know what you mean when you say its helped I still find that even now sometimes.

ditto what everyone else has said, hope to hear for you soon