Moving forward and coming to terms with the SAH.....

[Karen]

Well, it’s been just over 3 years since my SAH..........I started to write something on my 3 yr SAH anni, but never got around to finishing ... but here goes .....

My first year post SAH seemed to be dominated completely by the SAH, the effect of the drugs that I was taking for seizures, coming off them and probably some post traumatic stress and coming to terms with what had happened to me and the feeling that life would never be the same again. Those first 12 months were definitely the worse, frustrating and very scary. Not much support from anybody and I was wandering around for info and wondering whether life would ever be the same again ..... I would have loved to have had the support that I now see on BTG and I feel that it would have made a huge difference, to know that I was “normal” in the sense of recovering from a SAH. I’m not sure what initiated the beginning of this website, apart from the Salford/Soton message board being shut down and perhaps I was slightly “nutty” at the time, but kind of trusted my gut instinct, that I couldn’t be the only person to feel like this, so I had nothing to lose by starting it and needed the contact with other SAH'ers.

Just over one year later, I ended up back in hospital with another scare .... August 25th 2006 ....I was also in hospital on my birthday Aug 26th. I hated every minute of this hospital experience and that probably didn’t help with the depression that was lingering in the background.....it all just seemed never ending.

My 2nd year of recovery went much more quickly and even though progress was slow, it was happening ..... it just took me a bit of time to acknowledge the small changes and they were damned small, so I barely noticed a difference. I also tackled depression, got to the lowest point and somehow managed to get through it. I also found that I didn’t like the person that I had become. If there is a God up there, then at times, I did say a prayer..... I’m not religious, but at my lowest ebb, before I went to sleep, then there were times where I felt that I had nothing to lose ..... I also thanked God that I had a family and it helped to drive me on.

This was also the year that I discovered that my aneurysm still had a neck left on it and that fact didn’t sit comfortably with me at all. The possibility of having another SAH, filled me with dread. I’d already had a sentinel (warning) bleed at 38 years, that was basically mis-diagnosed and then the full blown thing at 42 years ..... I couldn’t deal with the fact that I could have another and knowing that I could die or have to go through this again with an even worse outcome ..... It took perhaps another six months from having this news, to start to come to terms with that one!

In my 2nd year, I started up the website meets and it took a lot for me to organise the first one ... not work wise, but wondering if I could do a long journey in the car and whether I would feel “okay” , not have a dizzy spell, feel tired or whether I could hold a conversation for long enough ...... I didn’t know what to expect really, but would say that it was the best thing that I could have done ..... even though I had met Keith and Scott at a Basingstoke meet, this was kind of in my hands and I just hoped that it would all go well and I could cut the mustard as such. It was another turning point for me and again, I was glad to have relied on my gut instinct, as everything went well. Meeting other people in the same predicament as yourself, is something that I would recommend to all SAH’ers and their partners. I have never come across any SAH’er that isn’t welcoming ....

In my third year of recovery..... well, that has gone quickly. Is life back to normal? To be honest, no, it isn’t back to pre-SAH days, but I’ve beaten the depression and I’m learning to live with the person that I am now and have come to terms with the fact that my aneurysm isn’t totally occluded. I’ve spent far too much precious time over what could happen and so far it hasn’t and I’m not willing to waste any more time. I can make allowances for the SAH and know that I’m able to achieve more than I could, this time last year. I’ve managed to do a bbq for BTG this year, keep the website running and recently, have been able to return to work for the odd day or two. This week, I’ve also been blessed that I’ve been able to see my daughter Lauren, celebrate her 18th birthday and my son Chris, celebrate his 21st earlier this year. Life is so much better than it was and I’m still experiencing recovery.

I still like to push the boundaries on occasions..... Sometimes I win, sometimes I lose.... but for me, if I don’t push myself, then I don’t know what I’m capable of achieving. Without the odd push, I don’t think that I would move forward, but I do know my limits and if I fail, then I don’t beat myself up over it, as I know that tomorrow is another day.

One word of advice to all of you that read this is..... Please don’t spend too long in front of a computer screen..... Make sure that you strike the right balance of doing the day-to-day things that will help you regain some control of your life..... Try to get out of the house and do as much as the “normal” stuff that you can do. Keep in contact with friends that haven’t had a SAH, as that will help. Take a walk and a break from the house if you can. Listen to others that have been through the same and there is hope and please remember that everybody on this message board is in recovery, even those that are many years down the line ..... as much as we can all offer support, we can’t work miracles and don’t have the magic answer to every question..... none of us knows what the future may or may not hold .... we're all learning to adjust to the way our lives are now and trying to come to terms with what has happened to us .... for some, the journey may be a long one, but hopefully you can see that constant recovery is attainable, but you do have to work at it and the outcome at the end of the day, is well worth all of the effort.

[myratas]

Hi Karen

Reading your account of SAH has really helped me today, i only wish i had your drive, you have achieved so much post SAH.

My biggest problem is that i ofter do not share how i feel but when i look at this website i get my answers.

You are also right by keeping in touch with other people but sometimes i think they do not know what to say.

Like you i am also living with aneuryms that have not been treated and yes you are also right i should not think about them.

Where did you get your strenth?

I wonder if we well and surely get over our SAH, I know that i have to get on with life and thank god that i can see my boy's grow up and see their other milestones.

I hope Karen that all your dreams and goals in life become true, you never gave up and this shows now that you are working keep up the good work.

Take care. You are an inspirational to us all.

Myra xx

[Karen]

Hi Myra,

I'm no different than any other SAH'er that I've met or seen on this message board and don't consider myself as a strong person, even if I come across like that ..... a bit fiesty now and again, but that's all..... I've also hit rock bottom in my 2nd year, but found that reading books on other peoples experiences of brain trauma helped ..... they also made me cry a lot and brought to to the surface a few deeper emotions that I'd locked away .... it also made me learn that I needed to be a bit kinder to myself and that it was okay to feel emotional after the assault of the SAH on my brain.....that was the one thing that I read and was repeated time and time again, by others that had gone through the same..... be kind to yourself and remember that you're ill. Once I learned that, I tended to believe that if I needed to cry, it was okay, I was ill and that it would pass. I also took one day at a time and still do to a certain degree. I don't like to plan anything ahead, unless it's absolutely necessary. Talking of books, if anybody is looking at this, then please consider buying A Dented Image by Alison Wertheimer, I really can't express enough, how much this book will help. (Just in case anybody is wondering, no, I'm not on any commission by plugging it, but it will help you with your recovery)

2 years ago, I would have never believed that I would have got to this point ..... if somebody had told me back then, that I would, I wouldn't have believed them. It all takes time to come to terms with things, which I didn't think was possible at that point.

You have your boys Myra and that will keep you going ..... the same as my kids kept me going... it will get easier for you, given some time .... There's still not a day that passes, where I don't think about the SAH, but it doesn't dominate my life any more and it's not the main focus of my life.

I've only just started going back to work, just doing the odd day here and there ..... I temp for my old firm ..... but have a memory like a sieve still and have to remind myself to go to work with a post-it note stuck in the kitchen with "go to work" on it! I also have to write everything down and have a "work" folder with reminder notes in it, as I'm paranoid about forgetting to do something when I'm there! I also have to have everything literally in front of me, just in case I forget to do the post, lock up etc. It was hard going at first and it took a while to re-build my confidence and I've kind of started at the bottom of the ladder again ..... but, I'm quite happy with that... That's not to say that I might have a really bad week and won't be able to work, so I kind of don't take anything for granted. Just pleased with what I've achieved so far....

I wanted to write the post, because I was hoping that other members will hopefully see that even though I've struggled with a slow recovery, that there is hope for them personally and that recovery is continually ongoing and that there isn't a cut off point ....life does get better ....

[jess]

Karen you have done so well you should be really proud of yourself. Jess.xxx

[Tina]

HI Karen

" Life is so much better than it was and I’m still experiencing recovery.

I still like to push the boundaries on occasions..... Sometimes I win, sometimes I lose.... but for me, if I don’t push myself, then I don’t know what I’m capable of achieving. Without the odd push, I don’t think that I would move forward, but I do know my limits and if I fail, then I don’t beat myself up over it, as I know that tomorrow is another day."

Karen, thank you for sharing your story.....you are an amazing lady, and a true inspiration to all! Thank you

I quoted the above, because that is also my way of thinking.....and you are proof that no matter how long or short the journey is to recovery...it does get better!

I think coming to terms with what has happened and accepting that your life might have to change in certain ways is also just another important part of recovery.

Karen, you have taught me, not to be so hard on myself, when i get so frustrated that i cannot be the person i used to be........but working on getting back there....always positive

Thank you again, for everything

Take care

Love Tinaxx

[Janet]

Hi Karen

I think you should be really proud of everything you have achieved it has been an uphill struggle for you but in the time that I have been a member of BTG your steady improvement has been fantastic to see. We all backslide from time to time myself included but the only way we can move ahead is to keep pushing those boundaries.

I would just like to say a very big thank you to you as your greatest achievement of all is BTG you truley are a remarkable person and have helped so many of us by providing this site which is a lifeline for all who use it both members and visitors.

Keep up the good work and keep pushing those boundaries

Janet x

[Skippy]

Hi Karen

That was truly inspirational - kind of gave me mental slap There are times even now when I'm too hard on myself for still not being how I used to be, especially where work is concerned. I know that my recovery has been fairly quick and "painless" for the majority of the two years, but there are times when I know and now accept that I will never be how I was pre SAH, though I have to admit it's pretty close.

I think I can speak for all of us when I say that we're so very glad that you were "nutty" enough to start this website - you have probably saved every single one of us. You've been a constant tower of strength to me and always given sound advice and encouragement - thank you.

We love you Karen and I we always will - you are a remarkable woman.

Love Sami xxx

[Karen]

Thanks everybody, for your kind words .... I hope that many of you will be able to write a future post about how you've progressed with your recovery .... If you can, then I think that it will be something that will help a lot of SAH'ers that are still struggling with coming to terms with their SAH.....it's good to see that there is hope and that you can find a good quality of life after a SAH.

Sami, I loved the terminology "mental slap" .... it made me smile...... got a feeling that it's something I might use in the future! I've had to give myself many a "mental slap" ...... A mental slap, has definetly helped to move me forward....

[tennissmithy]

Karen,

I agree you are both a remarkable and inspirational woman, not only starting this website but in your own recovery. I want to put my story into words from start of SAH to now but I am just finding it too difficult to do, I don't know why. I know most say it is therapeutic but I just upset myself too much thinking about it.

I am truly humbled to know you, you are fab

Love and hugs

Laura

xx

[perrycornish]

Hi Everyone and in particular, Hi to you Karen, I will add my gratitude that you had the foresight and courage to launch this website. The second word in the title title of this thread says it all Forward, Moving Forward is the positive way we can all look at this (I'm far to polite to use the word I would like to use so, ******) injury we have all suffered, moving forward is our only option really, some days it seems that it requires more than we have got to do so, but we must and with the support of others we can Your thread is a great help Karen and I too want to add that I really do think that Alison Wertheimer's Book is great value, I have taken to walking around the house with it, and reading bits aloud quite often as I want my partner to know how I feel that she has given me so much, both now and I know in the future! We need the strength of others, in our families or in the wider family of fellow SAH'ers I have just reached my six month anniversary so have, I know, way to go, so may be around for some time which may be tough for you to take I have seen my neurologist again and he is pleased with my progress and today I had another MRI, results not known to me yet, but I feel sure they too will be positive, I also know that if they are not, you will all be there to listen to me Must say I will be glad when my brain and limbs ( particularly my typing fingers, get back into synch again Thanks everyone, and a big thankyou to Karen, I imagine that for you this whole experience ( Behind the Gray) was cathartic which is always a good thing in the end !

[tennissmithy]

Perry,

Hope all goes well with the scan. Its my 2 year scan next week so its all go!

We have all made a great recovery but still I have bad days and mediocre days. We are blessed though that we are still alive to tell the tale

Laura

xx

[Guest ElaineW]

Karen you have done a fantastic job in launching this web site. As a carer it has been a tower of strength for me and someone to turn to when you feel so desperate and help is not out there from your own GP or hospital.. Thank you so very much. It is better than a good book.

Elaine

xx

[Louise]

Hi Karen

Well done you and I totally agree with Sami I'm so pleased you started the site and I found it looking back my old posts and reading your replies you have come such a long way you should feel very proud of yourself in what you've achived I know I feel very proud of you I feel very honourded and humbled to know you.......

I seem to have taken a backward step of late so we're now in reverse weird isnt

take care, hugs

Louise.xx

[Nurianna]

Dear Karen,

Reading your post has once again brought tears to my eyes. I seem to be on the verge of them lately! It isn´t a bad feeling at all. After "toughing up my way through life" it´s a relief to be able to let go of some preconceived image or expectation of how myself or things around me "should" be. Tears of gratitude, acceptance, of sheer joy, other times sadness......It´s all about being alive.

I´m grateful you had the courage, the strength and the inspiration to set up this website. I don´t know where I would be without it. I belong to other forums but this one is special. It´s magic for me.

You remind me of a lady called Hilda. She was the nurse specialized on tracheostomies I met and worked with at the hospital. Of all the people there, and I include my family, surgeons, friends, visitors and most of the staff, she was the only person I could really be "me" with and break down with and cry if I needed to. She never judged, she never tried to "Pollyanish" me or scold me out of how I really felt, she was never annoyed or scared about how I felt, and there was no pretence I had to live up to with her. She just understood, was there, let me be and was kind. Sounds easy to do but very few people really know how to do it. I sort of found myself in the obligation of "reassuring" everyone else around me I was feeling better, when really I was feeling like ****. Felt comfy not having to do it with at least one person. I will never forget her.

I believe what I went through is hard. And it has changed my perspective of my life and the rest of the world forever. Now I dance to my own beat. It´s the only way I can do it. A lot of people will never understand, but then as long as I have support coming from somewhere, I´m OK with that. I also believe this has somehow softened me up and made me a better person. I feel at peace on a good day. Bad days are a different story altogether, but I am learning to deal with them one day at a time. Most of the time I believe life is good and that I am fortunate.

Thanks again,

congratulations and lots of love,

Nurianna