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Celia - onwards quod sursum!


Celia
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My partner Jane was dropping our son off at church, and I was having my usual Sunday morning lie in. At around 9-40am I started to get up. On swinging my legs out of bed I was rocked by the worst pain I have ever experienced searing through my head, followed by a strange “trickling warm water” sensation in my skull. Clutching my head in my hands, I fell back on the bed. Fortunately my phone was on the bedside cabinet, and I was able to call Jane. I must have sounded a bit scary as I struggled to get my words out – ““bad headache” and “need you to come home”. When she arrived I was lying across the bed on my stomach, unable to lift my head as I fought the urge to vomit. She tells me that I had big beads of sweat on my forehead at the time. The first thing I asked for was a bucket.

She rang the NHS Helpline, and told them what had happened. After more or less eliminating Swine Flu , the NHS guy got Jane to take my blood pressure – I was already being treated by my GP for Hypertension, so I have a machine at home - it was 156 over 112. It was agreed that I should go to see the out of hours GP who was, coincidentally, located in a room in the grounds of one of the local hospitals. With minimal fuss, Jane helped me to dress. I could barely open my eyes, and just wanted to lie down. Our son arrived home, accompanied by a family friend. I think that Jane explained the situation briefly to her, and then she led me out to the car. I remember putting on sunglasses as the sunlight was blinding to me.

Two minutes into the journey and I began vomiting! Luckily, the ever practical Jane had grabbed a plastic bag as we left the house and I sat with my eyes tightly closed underneath the sunglasses, bag in hand, and slumped in my seat for the entire twenty minute journey. It was a sunny day, and I remember having to position myself in front of the A&E entrance and stumble, with my hands covering my eyes, in its general direction. The sunlight was blinding, and I desperately need to lie down. Jane parked up and joined me. I remember her speaking to the receptionist, trying to convey the urgency of the situation, but all I could do was stretch out on the hard chairs, holding my head and covering my eyes. After a time Jane managed to get me in to see the GP. Apparently the GP was a woman; I have no idea as my eyes were firmly closed throughout. I mumbled answers to her questions, pushed and pulled her fingers as requested, I think I began to cry. She told Jane that she suspected a SAH, and arranged for me to be transferred into the Hospital’s A&E.

Cue a series of slapstick events; I was told that I would have to walk there, but I was unable to lift my head, let alone stand. A wheelchair was sought, and eventually found. Jane wheeled me to the A&E and we were shown to a grubby cubicle where an orderly was wiping down a trolley. I was desperate to lie down, but was told, rather firmly, that I couldn’t until it had been covered with a paper sheet. She left the cubicle, and five minutes later I climbed onto the naked trolley. Another five minutes and she returned with a length of paper. Rather crossly she insisted that I got up so that she could “make the bed”. I think that Jane all but ripped it from her hands and shoved it under me as I lay groaning in pain.

Some time passed. The pain was still excruciating, the urge to vomit overwhelming. The A& E doctor arrived and started to ask me the same questions and perform the same physical tests. I remember feeling even more pain at the back of my head and neck as he asked me to grasp and push his hands away. He also suspected a SAH, and went off to arrange for me to have a CT scan, and then to be transferred to the Neurology department at The Royal Free. I think someone gave me an injection of painkillers. I fell into an uneasy sleep.

I awoke some hours later, and Jane told me that we were waiting for an ambulance to take us to the RF. The pain was still there, but felt “flatter”, somehow less “spikey”, and the light wasn’t bothering me as much. I needed to go to the loo. Jane asked someone about it and was pointed to a door in the corridor. Incredibly, I was encouraged to get up and walk a few yards to the toilet. I say incredibly because, from the minute the ambulance staff arrived, I was told to lie as still as possible and try not to move my head at all. I was lifted from the trolley to the ambulance by the very capable ambulance staff via a board. Their confidence and professionalism was reassuring, and I drifted in and out of sleep throughout the journey.

It was around 11pm when we arrived at the RF I think. I remember thinking it strange that the sunlight had been blinding when I left home, and now it was dark. I was admitted onto a HDU ward in the neuro department, and “made comfortable”. Needles were inserted into various veins, blood taken out and drugs pushed in. There was no family room available, so Jane was told that she would have to leave now. For the first time that day I was really afraid. The drugs, however, were doing their thing, and I soon drifted off into a hazy sleep. I was still aware of the nurses and doctors coming and going around me, of various lights, and of the machine beeps with which I was about to become very familiar, but I was able to sleep. And then it was morning again. Jane was back, having made childcare arrangements for the little one. I felt, strangely, better – the welcome input of morphine, I think. My head was tight, my stomach queasy – a bit like a bad hangover – but I was relaxed and able to converse. I was informed that I would be operated on the following morning; a procedure called “coiling”. I understood what I was being told, but it all went in one ear and out of the next. Jane asked questions and took notes. I spent a pretty relaxed day flat on my back, with various doctors and nurses checking on me from time to time, and reminding me to lie as still as possible.

The next morning I was taken to theatre for the procedure. I remember asking the anaesthetist to make sure that he put me under, and him winking and smiling at me. I was calm, reassured, and only a little afraid. Then I woke up in the post op area with a pounding head. I started to feel uneasy. It was as though someone had turned the volume up all around me, and had flicked on a double speed button. People were scuttling past me talking really loudly, moving really quickly. I wanted to just slow it all down. A doctor arrived. More questions – did I know my name, what day it was etc? I squeezed fingers as requested, and then fell asleep. I awoke back in the HDU ward, with an ashen Jane peering down at me. She had been told that the procedure would take three hours but I had been away for almost seven. Apparently a blood clot had broken away during the procedure, and this had had to be dealt with. I tried to smile reassuringly, and drifted back into sleep.

I awoke some time that evening, or in the early hours of the next day. The ward was quiet and dark and I was in an utter panic. I had awoken from a horrible nightmare where I was lying on my back, with somebody pushing me along the polished corridor floor. They were using my legs and feet as a handle with which to propel me, and using my head to batter open the swing doors. Bang, slide slide, bang, slide slide, BANG! I can’t forget the pain I felt when I woke up, and the utter panic it induced. I remembered the procedure and was convinced that something had gone terribly wrong. After the drug induced calm of the previous 24 hours, I was now propelled back into the pain and panic of the first day. I honestly thought I was going to die. I started to cry. Some kindly person had put the nurses’ alert buzzer in my hand, and I was able to call for help. The nurse gave me a pain killing injection and after about 10 minutes the pain started to melt away and I was able to sleep again. Of this entire experience, that nightmare, the pain and the panic are the things that I will never forget. Sometimes when I’m alone I am seized by a surge of panic; a fear of a return of that pain.

The following days were largely taken up with lying still in my bed and receiving visitors. My mum came, looking worried and trying to be cheerful. Former colleagues came, bearing gifts and mass signed cards. My brother, my nephew...and so on. I felt pretty self conscious, just lying there while they all complimented me on how well I was looking and doing. And then one day, about a week after my surgery, I suddenly had an emotional crash. Up until that point I had simply done as I was told without thinking about what was happening to me. Now I was seized by the enormity of the thing – what had happened, what might have happened – and I plummeted to an emotional low. I tried to push the feelings away, but I am left with a mixture of a strange nagging sadness combined with a deep fear – of what I’m not altogether sure – that only leaves me temporarily. I continued to get physically stronger by the day, and looked forward to being released from hospital. Twelve days after the SAH I was allowed to come home.

Some days it’s as if the SAH never happened. I wake up, I potter around the house, read, watch daytime TV (!) surf the net, and wonder what all the fuss was about. Other days I have to force myself to believe that the strange stabbing headache really isn’t a re-bleed, or the second ani about to blow. Then there’s the nights when I wake up feeling uneasy, and am unable to go back to sleep. I get up feeling anxious and unspecific ally sad, and mope around the house trying to shake off the negative feelings. My hair has fallen out in clumps, and I have started shaving my head to even it up. I’ve had long dreadlocks all my adult life and now I have to get used to a baldy/shaven woman looking back at me from the mirror. I am probably more concerned with this than with my second aneurysm which will need treatment at some stage in the future!

I really don’t know how to “handle” myself post SAH, but I realise that it’s still early days for me. I have adopted the saying onwards quod sursum! and that’s the best I can do, for now!

:???:

Edited by ChrisH
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Hi Celia

Well that taxed my schoolboy Latin, the best I could come up with was "that which is up"..only to see you had translated it for at the bottom..onwards and upwards...

I like Carpe Diem...it summarises my post SAH attitude....

Anyway, welcome to BTG, I know you've been around a while, but it's nice to see your story!

As everyone will say, it's early days yet, so don't sweat the foibles..or idiosyncracities as my wife calls them, they will get better, or you will learn to live with them.

Look after yourself, be kind to yourself...after all, that which doesn't killl us, only makes us stronger.

Best wishes

Adam

PS, I call the speeded up bit and loud noises you referred to "whizzy brain"..weird isn't it!!!

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Hi Celia

I'm 5 years post SAH today. I have no memory of the event itself or for about 10 days afterwards and reading your recollection of the pain you felt makes me realise how incredibly lucky I am that my brain has blocked it out.

Thanks for sharing your story.

Kim

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celia thats some nightmare you felt hey dont worry about the hair that will grow back sooner than you think with fresh vigor .

now's theres a reason to sit in a hairdresser being pampered and having all the fuss and coffees and choseing which style to have

im pleased the ambulance staff looked after you they always know what their doing i was one for thirty five years in london by typeing your story you have begun the recovery process which is nice and hopfully it will continue and you become more comfortable with the healing and begin to put the nightmares behind i really wish you well and regards to your family and your good self hugs and cuddles celia

Edited by paul99
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Thank you Celia for sharing your story. I know what a frightening experience it can be and after reading your story all the things I went through came flooding back to me, we were both at the Royal Free and I still remember the time in HDU, it's something that now seem so far and yet so near.

It does take time and recovery is different for everyone, there are days that I feel really down but I sometimes feel like I have to put on a mask for others which is sometimes hard to do.

I hope you make a good recovery and knowing that you can always come here for encouragement and inspirations is always good.

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Thanks for sharing your story.

like Kim I have no memory of that time, or about 10yrs before or since (much) I've always said I was lucky not to remember the pain thnks Kim your the first to say that too:oops:

But as time goes by the memory will get easier and fade it all takes time and your early in your recovery give yourself time .....

take care

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Hi Celia :-D A very warm welcome to you...thank you for sharing your story. Onwards and upwards....is the only way :-D I have not written my story yet....i can remember the extreme pain.....i was clipped, so cant remember alot, my husband has to fill me in. I am 22 months down the line now, after 7 hours surgery and doing well. Still get very tired sometimes and have balance problems.... but it does get better :-D You take care. Love Tina xx

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Thank you for sharing your story Celia. I had my SAH in June and am just a little bit further down the track than you. I can so relate to you about the feelings of anxiety and sadness and really not knowing what I am anxious about. But I do know that the feelings are becoming less and less and I have come such a long way from that day in June. I am back at work now albeit only 3 days a week for 5 hours a day. I am gradually increasing the hours that I work as I start to feel that I can cope with more.

I have learnt that getting better is going to be a gradual process and I just try to go with the flow now.

Big hugs sweetie :)

Debbie

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Hey Celia

I know what you mean about the emotional crash. Someone asked me not long after rmine how I was doing. I said "physically I'm fine - emotionally I'm scr*wed" . It was the worst time of my life - I felt like I was going crazy, I couldn't control my emotions at all. It scared the hell out of me. The things that helped are this site and seeing a counsellor. I finally felt like I'd got my sanity back if not my life. Now three years on and I'm practically how I was before my SAH. It takes time, but you will get there - and we're all here to get you through it - cos you're right, we all "get it" here.

Take care hun, speak soon

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