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Hello, and Many 2015 good wishes to you all


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Hi - I live in France, (but am British) and found you a few days ago. I just wanted to say 'hi ' and how pleased I am to 'meet' you. Wishing you all the very best for 2015!

I had a nasah in June this year - completly normal, then suddenly being airlifted to hospital in a helicopter with 6 docs and paramedics at my side. The medical staff were brilliant throughout, and saved my life over the next 21 days. I have never known feelings of gratitude like it! But of course, all the drama is now over and its a matter of dealing with the slow progress ' back' to a reasonable level of health. (But there is not a 'back' is there?). Reading what you say has been very helpful, insightful, inspiring and calming. And a bit of a reality check too ;)

Look forward to talking to you in the New Year :)

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We make it what we can Sara, its a long haul but if we are positive we can get there.

 

I was told I would never walk again now I can walk 60/100 yards before my back gives out.

 

We can get there as long as we never give in xx

 

I find singing helps and laughter helps (easier said than done) never give up.

 

When on a down day come on here it always brightens me up !

 

Good luck

WinB143 xx

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Hi Sara and a warm welcome to Behind the Gray.  Glad you found this site, but sorry for the reasons you have.  

 

This site, as you have already discovered, is a great source of comfort and useful advice for those of us that have had the misfortune of experiencing a sah.   I still like to visit the site, six years after my event!  

 

I wish you all the best in your recovery and look forward to seeing you again in the New Year,

 

Sarah.

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Welcome Sara. Your photo seems poignant to me at this point in your recovery. For awhile it will feel like you can't see yourself clearly, but slowly things will come into focus and the new life you lead will clarify. It won't be the same, but it will still be a good life. Some of us miss parts of our old lives. Some of us do not. I don't think any of us would say we haven't found at least one very valuable lesson from this experience. For me it has been to be thankful every day for what I have, and to take leave the drama to the actors. I don't let other people stress me out any more, and I never let a day go by that there isn't something that I'm truly thankful for. 

 

Do ask every single question you have, even if it seems insane. Here's one I had, "Does it ever feel like spiders are crawling on your brain?" Sure enough I felt stupid for asking, but lots of people had that feeling and I even found a flyer online that stated that sometimes it might feel like water (or spiders) is being poured over your brain. So truly, there is little that someone here hasn't experienced. So ASK!!

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Sara!  Hello!

 

I am glad you found this site although, like kempse, not for the reasons you have.  My sah in June this year also and discovered this site in August, I think.  I've learned so much from these people and soothed so many of my fears from them too.  Along the way I feel I have made friends here too.  

 

Wishing you a much better 2015 and hope that you come back and let us know how you are.  If you want to just chat the Green Room is a great place.  Win will want you to be in her singing group but don't worry about that!  lol

 

Take careful care of yourself.

Carolynusa

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Hi all and thanks for your replies - Happy New Year to you all again :-D

I know on the scale of things I am very lucky. At one point I did not know I would live, let alone walk again, so to have to deal with - I am told temporary - tiredness and loss of some mental skills, on most days (I am only human), seems a great outcome! My neurologists are pleased with the scans ..but say it will take a year at least to 'turn the page'. From what I see here, and have read elsewhere, I am prepared for that to be longer still. Of course 1 year or 5 or 6 is a long time to spend, without support once the drama has ended. Great that this forum exists.

- Win - I have seen you love singing - brilliant to have something like that. For me, I am an artist and I love skiing. Both these have always been my outlet, and even more so now. You are so right about being told you would not walk and now managing 60/100 yds. Who is to know really? BTW I grew up in Tunbridge Wells, also deepest darkest Kent.

- Kempse - still coming back six years on :) that says it all doesn't it, about support, information and how long the impact can last. 6 years ago I had not even heard of SAH, let alone tried to pronounce it! (and then have to deal with it in French)! Its funny, as for so long I was buoyed by the idea of how lucky I had been (the truth)....I forgot to see that its also shame that it happened. That feeling of surviving is so strong it does (again on most days) trump the self-pity. But as I grapple with the '6 months on' reality that is changing a bit, I admit.

- Carolinas - June then? Mine was on June 11. At the time in hospital as I recovered I wanted to reach out to others at the same stage but we were none of us in that 'frame of mind'! Good to meet you :)

Welcome Sara. Your photo seems poignant to me at this point in your recovery. For awhile it will feel like you can't see yourself clearly, but slowly things will come into focus and the new life you lead will clarify. It won't be the same, but it will still be a good life. Some of us miss parts of our old lives. Some of us do not. I don't think any of us would say we haven't found at least one very valuable lesson from this experience. For me it has been to be thankful every day for what I have, and to take leave the drama to the actors. I don't let other people stress me out any more, and I never let a day go by that there isn't something that I'm truly thankful for.

Good point on the photo Teechur. Actually its vanity too :) I posted it on Facebook and I have never had so many compliments. Because I am not feeling that glam at the moment I have been using it, but I thought it hilarious that so many people would rave about a picture of me that was so very blurry! but it was also picture taken the night before I had a scan at 7 weeks, and the all clear. And I completely agree with all the other points you make about drama, gratitude, and gifts that the 'damage' also brings in its wake.

In fact as many of you say, life is not necessarily worse, just different.I have found that very much. I have found that the things I have had to drop are letting me do other things more......As part of my rehab I have set aside an area in a shed as an art studio (I never did before) and have started to teach others to draw, paint, print, and do things for myself in there too. I am optimistic that the injury has given me space to be creative.

I was a ski instructor, so skied to a good level, was working on improving......When the snow came 6 months after the bleed, I worried could I ever do it again. It has been unexpected: I am delighted to say I can :-D and that is really something I am very grateful for. What has been a reality check is that I can't manage it for very long (minutes only)before the fatigue hits...I am hoping that that will get better in time. I am not bothered from a professional perspective, but just personally, as I love this sport so much. (I will ask a question on this in a separate thread).

Thats sot of where I am - lucky, yet daunted at the 6 months stage. Meanwhile most around me think I am already 'better' :nono: I see this is common, I am not moaning, it is what it is :mellow:

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We will get there Sara and on off days you can sing with Carolyn and me.

 

We need happiness in our lives.  We can make it with laughter and love xx.

 

So get happy when down xx and All will be well xx

 

Good luck

 

WinB143  xx

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Sara!  It's been so nice to read your positive remarks and see that you are learning and understanding what this thing called an sah is about.  I am the kind of person that has to understand absolutely everything about something and I cannot really touch this SAH I had.  It's so odd.  Part of the reason is that I was in a coma for 4 weeks and don't remember any of that.  (mine was 6/3/2014)  Another part is that I feel I am a different person but mostly don't understand how.

 

Sometimes (like this morning...lol) I wonder what was the point of me coming back but I had a kind of epiphany today.  I really do love people and I think there are things I can offer them - even if it just a smile now and then.  My epiphany also made me realize that if I can gift even one person even one second of happiness then it is worth it to be here.  We all need that.  Not to mention our families!  Luckily I found this site and kept seeing posts where this silly woman in overalls was telling people to sing and asking them to join the choir.  I smiled each and every time I saw a post from her.

 

Then there is Keith who is SO busy and such a great conveyor of what is happening in his kitchen and his life that I have to read his posts to my husband also.  There's Daffs, Tina, Super Mario, Gill, Karen, Macca, Teechur....I could go on and on.  My point is that these people have been through what you and I so recently did.  They are here today trying to help others and making others smile even when our heads make us not want to.  Life is good Sara.  Stay happy.  Love love love that you are into art.  Skiing scares me though.  lol.  Come back here and share as often as you feel like it.  Most of all heal and be happy.  

 

Much love to you - and all the btg'ers

Carolynusa

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I am SO thankful you can still ski!! Taking away your skiing would be like taking away Win's singing or my running. When I got out I literally thought I'd go straight back to running. My bleed, I was told, was "no big thing" so when I got out I had none of that feeling of being lucky to be alive. My neurosurgeon, in fact, minimized it to such a point that she had me back at work teaching full time the week after I got out of the hospital. I got out on a Wednesday afternoon. 

 

On Thursday I tried to get dressed on my own, halfway through I was in tears because I not only was so exhausted I couldn't finish, I also couldn't remember how. She "gave" me another week off, but I think she thought I was overreacting. It wasn't until I saw another neurologist who said "What don't you get that your brain bled and you could have died?"

 

None of it. Didn't get that from anyone!* When I realized that it was as serious as it was, I was SO thankful that I could still run, even though I still have a headache every day, all the time. In fact, the only time I don't have a headache is when I run. It is when I feel like "me". It doesn't always work, but it works most of the time on long runs of at least 90 minutes or more. 

 

So I understand 100% what your skiing means to you. I was out running with friends today and took a tumble. As I was falling my first thought is always "Don't hit the head" and second is "Are my legs okay??????" because the thought of not being able to run for more than a few days just makes me queasy.

 

*To be fair, I minimize everything and no one was asking me to do long division in the hospital, or put together a salad. While I did dress myself, it was always just pj bottoms and the same old hospital top so not exactly anything complicated. Put together a salad was the second thing I remember crying over when, the second night home, my husband made a dinner salad he makes often and I didn't know what to put on my salad first and burst into tears. Poor guy.

 

So maybe had I told my doctor that I wasn't able to read, that tv shows confused me, and things like that...or maybe they should do some simple tests like have a person add or something, then my doc would have known I actually had brain damage. I could talk to you like I was fine, but I then middle of the conversation my brain would reboot and I'd forget what we were doing. Of course the doctor would see me for like 2 minutes a day, so how would she even know?

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Welcome to you Sara . I am so thrilled that you have managed to get back onto the slopes albeit for short periods, how exciting for you to glimpse and maybe get affirmation that there are parts of the old version of you buried deep but that will hopefully able to re-emerge over time. I can imagine skiing would be good for the soul and physical recovery just don't get your head too cold , I find that very uncomfortable.

Doing something creative definitely seems to help, I set myself small challenges to learn a new technique or finish a small project and definitely found healing in it, again the caution is to pace yourself , dont rush.

So be kind to yourself Sara and enjoy that mountain air and try to Stay upright on the slopes! ( you too teechur when you're running)

I am inspired by you to try and get more physical this year and not fear the effects, it'll be three years in March for me and I need to improve my fitness from just walking, mind you I still need my stick some days for balance so may need to be a little less ambitious in my endeavours. Take care.

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As Daff says, doing something creative does help. During my early recovery I bought a hand carved, home made spinning wheel that had come out of a barn in Poland.

To say it was filthy was an understatement. I spent hours, going into weeks and then months, with fine wire wool cleaning it up bit by bit and then replacing all the perished leather. Finally I waxed it.

 

It still looks very well used but actually does work, although I can't spin. It is now on display in my dining room as a feature along with a spinning stool I bought.

In my early days of recovery I found that project was very therapeutic and not too stressful on my brain. To see the result was rewarding.

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Hi Sara hope you are feeling better. I think we are all in the same position, I am nearly 2 years in, we have just had Christmas which I dread. My family forget I am over 70 and that I get tired or shall I say exhausted. I am just beginning to pick my self up having had family for 2 weeks. We can never be exactly the same, it is just trying to pace one self.

On the bright side I had not used an iPad until my SAH my first messages to Behind the Grey were terrible as I just did not know what I was doing! I would never have bothered to learn to use a computer if I had not had an SAH. I was a keen horse rider, I was advised not too ride as my balance is not good. I now drive a pony and compete in unaffiliated driving trials. Can not compete in affiliated as we are not allowed to have any tests called. Brain problems are not classed as a disability!

 

I think your sking is great, some times we have to change sports for some thing we can do, but keep going as time goes on we do get better, or perhaps we learn how to cope. Ours is a hidden problem. People, ,even families forget and get impatient with our tiredness and the never ending head aches. When I wake up with out a head ache I rush round doing all the jobs I had not felt like doing, then I get a head ache again. As Win always says keep laughing how right she is even if you feel like crying . Happy New year love Jill

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Hi Sara and welcome to BTG .... some lovely replies to you and all I can say, is that you're early days post SAH and life will get better given time  ....don't rush it and be kind to yourself. xx

 

Jill, without going too much off topic ... I can see that you've done wonderfully well since you first tried to post on Behind the Gray and the amount of help that you needed in your early days on here ... I know that there have been quite a few members on here, who also had never used a computer until after they had their SAH.... but all have made so much improvement and being 70+ years? .... well, you are a complete star in my eyes and driving a pony too!  :)

 

Be proud of yourself Jill .. and if your family forget that you are over 70 and recovering from a SAH .... I don't ... you're an inspiration to all of us. Happy New Year to you too and wishing you all good things. xx  :)

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I told my sister the other day that "they" should make a book for "Anyone leaving the hospital that had any kind of brain injury". There just is not enough information when we leave the hospital on what to do and not do and what to expect, etc...  

 

I had to almost chuckle when you said "there is no back" and no there is not. Our lives changed in an instant, never to be the same or close to it. 

 

I saw someone else post something like this that made me feel better "I feel like I have someone else's brain" and I have felt like that since I first could remember after getting out of ICU. 

 

I too had the NASAH and didn't even fully realize it for about 18 months. I just knew I had a brain injury. I went back to my neurosurgeon after 3 months and he pretty much said your all better- have a good life. I was the one that contacted him after 6 months to tell him I couldn't remember much anymore- and was that normal. That was when he asked me if I had a neurhphysc test. I told him I don't remember (duh!). So he checked and said no- so he ordered one. That was a huge eye opener!!!

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Thank you all for the lovely comments :)

 

Daffodil - great that you are getting physical. Personally I find it both a great help and great challenge!

 

Super Mario - I love the idea of refurbishing the hand carved spinning wheel, and the therapy of restoring it, for all to see now.

 

Jillbb - still driving ponies! That's a good adaptation from riding, can imagine how you might still miss riding nonetheless.

Before this happened I was involved in Adaptive skiing. A helpful preparation for now. For former skiers, there can a sense of loss, which can be replaced by the joy of actually getting moving again in the mountains.

 

Carolynusa - that is exactly what you can offer people :)

 

Ponigirl - someone else's brain, yes indeed. Sometimes it's not always a worse brain. I find I am less bothered about what seem to be now to be trivial things....

 

Teechur - tell me a little about your running. Specifically - is there any research out there to guide how to pick up quite an intense physical practice again? Or did you 'just do it!' ? How did you approach it?

I was told to resume my old life over time. But I don't think they realised what level I was talking about. They saw a middle aged-ish woman and imagined her pottering on easy slopes. That's not how I ski (-ed)! And I live in a ski resort.

 

Turning to the professional skiing community doesn't help for clarity either. It can get patronising, as of course, I am not at the previous level. I am ok with that: I am just happy to be skiing again, would like to develop it, but at a pace that works.....in fact I have no option but to do it that way.

 

I was delighted last week to ski with a group training for some professional exams. It was marvellous, I stuck with it all day too, and felt great to be back. I was curious to see what I could do, and what I couldnt. But I was totally wiped out for three days afterwards, of course!

 

Nothing in the day indicated that I would crash with exhaustion afterwards, but crash I did! I have to say though, that each time I crash, despite that, I feel better for the prior exercise. It may seem a bit much to others that I am talking about skiing like this - but in some ways I was a better skier than walker before - so it is all relative.

 

At whatever level, whatever you can manage for you, some degree of physical movement can help. I am trying to find what that reasonable, therapeutic, stretching-but-not-too-much-level is.....and yes, always keeeping kind to myself, not rushing. ( well not too much ....) So any advice on picking up that again, and any knowledge of research on what works after SAH would be great! Any leads welcome!

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