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One year on, how lucky am i


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It does not feel like 12 months since I had my SAH. In fact I had never heard of the term before this. I have been blessed in many ways since it happened. This may sound like a strange thing to say but I do feel it happened for a reason and that I survived for a reason.

The biggest blessing is how much of me remained intact , without repeating myself I had a catastrophic brain haemorrhage (the doctors words) and a bleed behind my left eye, they told my wife that I was not expected to live past the next morning. My eldest daughter straight to the point “is Dad going to die then?” Yes was the reply.

Without dwelling on the above I was saved because there was a bed at Stoke North Staffs Hospital and I was transferred by HDU Ambulance and by midnight was in theatre having my first burr hole drilled in my skull to relieve the pressure and start draining the blood. For the next few weeks I was away with the fairies not knowing where I was and not making much sense of things. I was totally bedbound and not making any attempt to move or get out of bed. Everything was done for me in a controlled way. To later find that these things had been done including the wearing of a nappy that was hard to come to terms with that I was so far away that even that function I was unable to carry out.

I had to have a second burr hole drilled at about week 4 because the first one worked its way out with a little help from yours truly. My brain was unable to cope with the cerebral fluid and I had hydrocephalus. A CT scan also discovered another un-ruptured aneurism. The doctors told my wife it had to be fixed because another bleed would certainly kill me. She consented to an operation via my groin up too my brain, (operations I had watched on TV before hand). The aneurism was coiled and made safe like diffusing a bomb. The risks again of me having a possible stroke due to the closeness to vital nerves and sensors during the operation. Once again I was blessed with the Surgeons skill.

Finally they decided to operate and put in a VP Shunt, to quote my hero Peter Kay; “what’s that?” But that fourth operation to my brain finally was the missing link to enable me to come back from the fairies. Once again I was blessed with the Surgeons skill. Within a few days I began to make sense to my family and friends.

Now when I said at the beginning of this story I was blessed, I also have to include finding Behind the Gray. In fact it was my daughter who discovered the site while searching for things to help me. I am a very inquisitive person who has to find the answer or reasons for things. This site has given me so much support just by listening, sharing and being a place where I can voice my fears, experiences, achievements and much more. To be able to share with people from all over the globe and realise that almost everything that happens to me has happened to others. If I have a bad day of headaches it is not another SAH but just the brain recovering and healing.

I have been blessed because when I read some stories from other Members and I see how some people have been affected by their SAH and how they have been disabled I know how lucky I have been with my recovery. Every day I get up and am thankful for my recovery.

What has been the hardest thing is the constant battle with the establishment to justify being currently off from work. My Doctor who I respect greatly signed me off as unfit again in July for six months; I have a job and am looking forward to going back to work. Work had been fantastic and paid me six months SSP. Then I had to follow the complicated and stressful ESA application system. All I wanted was support to enable me to continue my recovery. This however is not what it is all about. Within two weeks of seeing my GP I was called for the famous ESA Medical. They had dismissed my six month note and only counted three months of it because I was a new claimant. Hang on I have been ill since November 2009! It was as if my previous notes and six months on SSP had vanished from the face of the planet and everything starts afresh with them. Needless to say the result of the ESA Medical was negative and I was deemed fit for work. This by a person who had just met me for the first time and carried out an assessment that was totally biased to not including any facts that related to mental condition of problems arising from the SAH. It is obviously geared to a physical capability assessment. Also I class myself as a reasonably educated person who can hold a conversation and carry out basic calculations, not advantageous when being assessed. After my SAH I had to purchase a new mobile phone, primarily to enter details of what I had done that day to enable me to remember, also to enter upcoming appointments, this worked against me because I was deemed able to plan this task, not that it was a necessity due to my short term memory problems. I could go on for ages but enough said we are going to appeal. Today I went to the CAB who are carrying out a nationwide collation of candidate’s experiences and gave my side of the story. I must just finish this section on the ESA saga by mentioning the opening remarks made by the doctor who said “so you have had a Stroke then?” Now rightly or wrongly I know people class the SAH as a type of stroke but my diagnosis was a Catastrophic Brain Haemorrhage, and secondary bleed behind the left eye, complicated by subsequently suffering from Hydrocephalus needing a VP Shunt operation. Her reply was “so you want that putting down then? “ This brought amazed laughter at the CAB.

Moving on the year has progressed to me I think now levelling out with my improvement. I have learned to live with my legacy and live accordingly. I have short term memory difficulties, like an empty book when I try and recount recent events. I get fatigued if I try and do too much in one go, and I get confused if I try and multitask, leaving things on (cooker, taps) if distracted.

However the year has finished with me becoming a Grandfather for the first and probably only time. It is a joy that has no price on it. My daughter told me whilst I was away with the fairies that I had to get better to become a Granddad. Even now she cannot talk about what went on during those six weeks. To finish this rather long story I will just say that my family had the misfortune to experience all that happened to me during those first six weeks, their stories have amazed me with what happened but it must have horrified them when it was happening. As I said at the beginning I have been blessed in many ways with my recovery, not least by not remembering those dark days. They were not so fortunate, they witnessed everything!

Thank you to all the Members on BTG who have also helped my recovery with your advice, kind wishes and daily support. I believe the website address should be in every Hospital Ward on the Notice Board.

Here’s to the next 12 months and a return to work x :-D

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John thank you for psoting this very eloquent update to your story. Indeed we are very lucky to be here & it's thanks to all the medical staff & surgeons to the wonderful hospitals that we are still here. It's an amazing journey & as I approach my 6month anni I can see my 12 month one in the distance & know from you have sia it's something to be looked forward to & embraced.

Thanks again John

xx

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john

congratulations on reaching the first milestone of your new life and may it continue

your posting i think says it all and i also wish people would get it right it was a brain injury not a stroke i hate it when people say oh you had a stroke as if its nothing a stroke is a totally different discipline and a brain injury is a brain injury be traumatic or a bleed is a brain injury

sorry i didn't mean to hijack your posting but my heart go out to you enjoy the day don't dwell look to the future and enjoy congratulations john

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Well done John!! You have written that so eloquently and it echoes my feelings entirely (it was my 9 month anni-versary yesterday).

I wish you all the best with the ESA. You might have seen my thread about actually getting an apology from them for not completing my assessment appropriately! Who knows where it will lead but I'm hoping it won't go to appeal, as I keep reading on the Consumer Action group forum that people are getting results just prior to the appeal date.

So glad you are one of the lucky ones. Enjoy being a grandad, and take it easy on yourself. :-P

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Hi John :) I remember when you first joined BTG :) Your positive attitude is a credit to you and an inspiration to others :) Here is to the next 12 months and getting back to work.... if anyone can you can :thumbsup: Well done John :biggrin: Take care love Tina xx

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Congrts John:lol: I was having a bad day , im lying here on my bed it's saturday its abt 26d outside the sun is shining , the kids wants to go to the beach, but ive got a headache and im fatgiue to hell !! So i was crying on the bed when i came on line . I read your post which has given me hope and strenght to stop thinking poor me but to say how lucky i am. I can still see and talk to my children and watch then grow and in time be able to get there with them. Im almost five months on in my recovery and boy has it been hard with four children, but im blessed to have them they have been superstars!! Now ive read your post im going to focus on the positves and thank God im still here for the kids . Thank you for making a crappy day better :wink: sending big hugs your way Grandad John xxxxxx

Thanks Rhiann xxxx

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