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Nearly six months, very happy to be here.


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Nearly six months since my SAH. I know I have said it before but not remembering anything of the day of the bleed and following seven weeks is still an issue with me. Like a lot of us I nearly died, having a Grade 4 bleed in the top of my head and another bleed behind my left eye. Then to make it even more difficult to recover and come back from being “away with the fairies”, I have hydrocephalus and had a VP shunt put in.

Let me say before I carry on the site BTG has been a tremendous help to me, support, humour, information, kind words and much more.

That’s my advert over, only joking I would be lost without the site and all who contribute.

I class myself as very lucky when I read other peoples problems from their SAH because mine are not visible ones. I do not have any paralysis; I have full use of all my limbs. But my problems are the hidden ones, memory lapses, confidence, fatigue, forgetfulness, went out without locking the front door yesterday, first time I have ever done that.

I undertook two hours worth of memory tests with the Neuropsychologist a few weeks ago, well after a little while I was just guessing because I could not remember anything. I was worried that my guesses may have been accurate and given a wrong impression of my ability.

Last Wednesday we had another visit and two hours of more tests, these however were more problematic and numerical and I did better.

But I am worried like a lot of people that because my SAH is not visible people will think I am capable of more than I am at present. My job is that of an NVQ Assessor Trainer for a College. I have to drive daily to my place of work and just before my SAH I was doing 100 miles a day plus and working six hours on site. I do not feel able to do this job at present and maybe not in the future.

I was very fortunate that I was at home when my bleed occurred; I could have been many miles away in a Premier Inn or in the Car driving. I want to go back to work when I am ready but do not feel that is yet. I also do not feel I could do my old job as it was. I class myself as a clever person with good abilities, well I used too.

It is very strange with my memory problem, I am sure a lot of you have the same problems. Only this week on Tuesday we went to Worcester to visit my youngest daughter who hopefully is going to make me a Granddad in October, by Thursday in another conversation I had forgotten it was Tuesday that we went to Worcester, my mind was blank. It is like opening a book and finding the page has no words on it. It feels very strange, there is just nothing there. If I do anything physical the next day I am wiped out. It is very difficult to find a balance. Every day I am reminded of my SAH when I wash my hair, I have two burr drain holes in my head which me Julie had called dimples and my Shunt. If I am too vigorous with drying my hair it feels strange. When we had the hot weather last week I really suffered with my head and had to wear a hat to shield the sun. Does anybody else with a Shunt suffer in the sun?

Next Saturday I go to Stoke for my first six month check up MRI scan. I had an Aneurysm coiled while at Stoke in the first month, I suppose they will check it is still full and nothing else has appeared. Some days I feel very strange and have strange feelings in my head that I cannot explain. They are not headaches in the normal sense but strange sensations. I have also to come off Warfarin soon as I have been on it for six months since my PE’s.

Anyway I finish with the point that regardless of what has happened I am very grateful to still be here and class myself as very lucky to have survived. Thank you for reading this note.:wink:

Edited by johntaras
Me Julie checked it!
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Hello John,

I think your an absolute inspiration after all that you have went through.. your a very strong man of that there is no doubt. I was reading an article about Bret Michaels(american singer) who suffered a SAH in april. His Neurosurgeon said only 15 to 20% of people come through a Sah with no problems at all. Thats why i know how very lucky indeed Mark is. You say you feel very fortunate that you had your bleed at home as you could have been away driving, thats the way i feel as Mark drives all over the UK in a 17 and a half tonne wagon.... its unthinkable if that had happened in his truck.

I hope all goes well at your six months check up take care John. xx

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Hi John,my heart goes out to you. I tremember only too well that 6 month after feeling when I was tired of it all, wished I was like before and was scared that I wouldn't get any better. Improvement seemed at a stand still. I can only tell you that for me now 18 months on and alot of the problems you describe that I relate to have almost disappeared. My head gets cold in the winter and hot in the summer ( I haven't had a shunt etc.) and I had creepy feelings in my head and often still do. Hang on in there be as patient as possible,think positive. Your a survivor John a courageous person who's come a long long way in 6 months. Give it more time. I send you big hugs and lots empathy and loads of luck. Maggie x

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Hi John

Glad you're here too :D

You have had a lot to put up with and work through, and you seem to be doing a brilliant job remaining positive!

It is difficult wanting to piece together everything that happened, and wanting to know how, what & why, and wanting to return to pre-SAH 'normality'. It is hard to come to terms with the new post-SAH normality, but we will get there at some point.

Good luck at your 6-month check-up.

Take care

Kel x

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Hi John

Congratulations on reaching the 6 month mark post SAH. I think you're doing really well after all you've come through recently. I too had lots of tests with a neuropsychologist post-SAH and found them very tiring at the time and think I still would. These tests are set up so that people fail them in one way or another ie they are to find what is wrong rather than what is right (according to my OT, at the time).

I do think the brain does rewire itself. I am not sure how this happens but the neurologist I saw said it goes on happening long after an SAH. I think you should now just concentrate on the present and how well you've done so far. And don't rule anything out or in for the future as it's still very early days for you.

Best wishes

Anne

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John, well done for getting to the 6 month mark. That was the time when I felt that I was really getting back to normal, although it took much longer to get to a point where I actually felt "normal" whatever that is!

Your hidden challenges - I don't see them as problems - are the same as mine almost 4 years on. My short term memory being particularly bad at times.

Keep going John and you'll get there.

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It's great to have you here John. You have definitely been through a lot and I can totally empathise with everything you say! It's 3 1/2 months for me, and I don't have any physical problems either. I too worry that people think I'm ok but I'm not in my head (if you get my drift!!). My neuropsychologist has put off doing the tests because she says they in themselves are very tiring and it wouldn't be useful to do them and just have me exhausted at the end of it. Also, she doesn't want to do them in one go.... And like you I worry that if I get too much right then she'll say I'm ok and can go back to work. Just thinking about going back to be a PA/secretary makes me break out in hives!!

Good luck for the future John :)

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Well done John :) 6 months down the line :) you have done very well ! Like you , I still have short term memory, extreme tiredness, cant multi task and get frustrated that i cant do these things like i did before. I think KeithB has a good way to look at it...try not to see them as problems...find ways to get round them...i am still trying ;):) but getting there. Take care John and keep positive...you will get there. :) Love Tina xx

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Hi John 6mths well done....

As you know your memory stuff is very similar to mine so I know just what your meaning.....

Re: working when your ready to go back you'll know it I think as you say just now your not ready...

Yep I ware a baseball cap when its really hot, I used to love the sun but now find it very hard going although I enjoy the brightness thats good for me, plent of liquids and dont do too much is my advice.....

take care, and well done again....

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Hi John,

You're doing v.well with your recovery and a great asset to this site with your positivity! :-D

Time is a great healer in terms of recovery and the hidden problems as you've mentioned.... but you do learn to adapt and things feel less raw with time....

I must admit, that I can't really remember what life was like now, before the SAH .... apart from running around like a headless chicken most days!.... :wink: I feel that I made a conscious decision after the SAH, not to return to that scenario and still won't, unless I really have to...

All I can say is, that you have to be honest with people and yourself... compare yourself to how you were, when you left hospital ..... give yourself time to heal and you will start to re-build your confidence. It takes a while to adapt to the challenges that we now face, but you will find coping strategies .... and the brain does learn to cope.

Wishing you the very best ....xx

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john

yes as you say nearly six months but you have come through the other side a better person even with all the problems you have and you have made the world and here a better place and i know for one its a pleasure getting to know you keep it up take care

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Hi John well done on reaching your 6 months, Merrills memory is very poor she seems to forget whole periods of time, 4 days in Yorkshire she lost completly, although she will remember bits of it if i prompt her, and last week she said to me when we were out shopping that she must get a hat as the sun had been burning her head,although she never mentioned it at the time.

You seem to be doing very well John and long may it continue, Best wishes Rod

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Hi John

I hope you continue to make further recovery, the last six months have been life changing for you I am sure. The road to recovery after a SAH is really difficult with many ups and downs as I have found in my case.

Your positive way will bring you even further and I hope you continue to make positive changes into your life and enjoy your surroundings with your loved ones.

Take care.

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I'm very happy that your here too. Thank you so much for coming to see Richard yesterday - we both really appreciated it. He mentioned today that you and him had a good chat (although he thinks it was this morning you saw him). It is lovely knowing that there is someone close by who has been through this and come out the other side and it has definately given Richard some hope. Called into the coffee shop to see if I could see Julie to introduce myself but couldn't so will keep a look out for her.

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congrats John on your 6 month anny-versary

good luck with your new appointment

I had my 1st MRI saturday after 9 months since my SHA (sure they are taking their time) just now waiting to hear as to the date of my appointment with neurosurgeon.

No rush , my eye still giving me trouble. Good weather seems to be coming so hope it will cheer me up a bit which I really need

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Hi John

Well done on reaching the 6 month mark and keeping your positive attitude. I can remember reading a post a while back (I think it may have been Karen, sorry can't remember) which mentioned that the first year was really about healing and recovery but the second year bigger improvements could be noticed. I'm now 15 1/2 months post SAH and I can see a greater improvement these last couple of months. Of course things at work earlier in the year hampered my recovery because of the stress. But my husband told me last week that he can see much bigger improvements, he says he can see not small sparks of the strong confident person I was but he says there's big flashes of it! I feel I'm now finally starting to get "better".

I too have moments of absentmindedness, like forgetting to switch the washing machine on or going away for the weekend and forgetting my pills and having to turn back after an hour on the road! At first it would annoy me when friends would say "I do that" when I told them of something silly that happened. But not now. John how many people do we know that can forget to lock their doors and they haven't had a brain injury! I now say to myself "well they haven't had a brain injury and they do it!" We know that we didn't do these things before SAH and it's these little changes that can be hard to come to terms with. But as you say we are still here and we're very lucky because as we know some of us on here have even bigger mountains to climb.

This is why this site is so helpful and why we get so much inspiration from survivors who are further down the road than us. Once again thank god Karen had the insipiration (and energy) to start this website and help us all in our recovery.

Good luck for the scan. I remember being really nervous for my angio in February and being really glad it was over!

Take care.

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