Wednesday evening 07/01/09, I noticed a sharp metallic taste as I ate my meal - my stomach churns even now 16 months later when I think of it! I still can’t face the same meal! Thank heaven it wasn’t my favourite!
I’d felt a tad below par for a few weeks, it started after a really bad headache which I’d thought was a migraine. Ever since then I’d had a dull head ache every morning which wore off during the day. Just after I finished eating my meal, the same type of headache came back with a vengeance. I thought my head would explode. After a few minutes the pain subsided, I went to get a glass of water, took two steps forward and collapsed. I lay there unconscious for a several minutes, when I came round my mouth was strangely dry and crusty around the corners. I was home alone, I crawled to the phone to call my daughter, and she said to call NHS direct.
NHS direct asked a lot of questions during which time I was violently sick. I could hear the woman calling my name and could tell by her tone she was cross with me; she probably thought I was drunk! She said as I’d collapsed I should get checked out and asked if I knew where my local A & E was. That was that, what was I making a fuss about! I called my daughter back, she lives over 100 miles away, I had a job convincing her not to drive over. I told her I would get checked out in the morning if I didn’t feel any better.
The next thing I remember was Friday the 9th. I awoke post operative a man in green scrubs standing next to me, then I heard one of my daughters gentle voice ‘Mum your in Hospital, you had a brain haemorrhage and you’ve had an operation. You had an aneurysm, you’re lucky you survived, Mum your very poorly!’
I floated in and out of Morphine induced sleep with my daughters and my nephew repeatedly giving me the details of how I’d got there. Over and over they told me until I was satisfied. As I lay there listening I felt a strange feeling of peace and tranquillity, a calmness which wasn’t befitting my situation. I thought ‘I’ve got to get through this; somehow I have to pull through!
Thursday afternoon after I’d collapsed two friends had phoned; I’d chatted to both and told them I had a migraine. My daughter had called me later in the afternoon to check how I was; we had a ‘normal’ conversation. I’d convinced her that I would be fine after a good rest. Just as the call ended I’d asked what we were having for our Christmas dinner and sounded very surprised when she said we’d had it two weeks ago. She immediately made plans to come over. At the same time she alerted my sister in law and my nephew who came straight away. When they arrived I was in a confused state and complained that my head and the back of my neck hurt, I was sick whilst they were there. They took me straight to A&E where I was rushed through triage. By the time my daughter arrived a scan had confirmed a bleed on my brain and plans were in place to transfer me to Hope Hospital Salford where I was diagnosed as having a grade 2 SAH and was to have a procedure using platinum to coil a ruptured aneurism in the left post comm artery as soon as a slot came available.
I have no memory of any of this. I’d been chatting coherently all the time and given the doctors several explanations as to why my head and neck hurt ranging from; a ski accident, whiplash from a car accident or having drunk too much wine! It’s really spooky not remembering. Perhaps my mind had shut it all out. When I came round post op I wasn’t shocked or as frightened as I’d expect, it was as though I knew!
My first days on HDU were mixed with pain and a constant round of essential checks to keep me alive, everyone moved faster than normal, noise louder and sharper, lights were blinding everything was different. Morphine released me from my mantra ‘I must get through this’ as well as providing welcome respite from the pain, its induced hallucinations kept me occupied. I was convinced there were parties every night after visiting. Book clubs and painting clubs celebrated their achievements with cheese and wine. Their partying was full of noisy laughter keeping me awake. I was getting more and more miffed at being left out. I complained that I was uninvited and only discovered that the ‘parties’ coincided with the handover at the nurses station on shift change after quite a few restless nights! After 5 days I left HDU, this signified the next stage of my recovery. I was happy.
Unfortunately this was short lived. I developed complications within 24 hours and gradually lost the ability to communicate as my brain went into vasospasm. My family had come to visit and noticed that some of my words didn’t make sense, soon none of my words made sense. I developed a language all of my own which amused me, but not my family! I call this my ‘eski weskit washin elves and benzyl’ phase. Eventually I lost the ability to communicate in any form and threw a pencil at the wall in sheer frustration because I couldn’t remember how to use it let alone what it was called. The last thing I recall was the frightened, bewildered faces of my family as I was packed off to HDU -and to the parties!
Several scans an angiogram and four days later I started to make sense of what was being said to me, slowly but surely my comprehension and communicating powers returned. I can’t explain the euphoria when I spoke my first sentence and got a response which proved I’d been understood. My family squealed with delight. They’d been given little hope and tried to prepare themselves to accept and cope with what ever part of me that came back from this. Just so long as I came back.
It was decided that dehydration was the cause of my demise.
There were no more set backs, I maintained enough progress to go home after almost 3 weeks. Before I left I was advised that I must surrender my driving license. The specialist nurse said not to drive until I’d been given the green light at my follow up appointment in 3 to 6 months time! I was devastated; it signified the loss of my independence which up until that moment in time I had not allowed myself to even contemplate. As far as I was concerned I’d be up and running as per norm in 3 months tops! What was she saying? My heart sank as I was told something of what I might experience in my recovery. She told me that it would be like taking ‘baby steps’, to listen to my body. It slowly dawned on me that my life had changed for ever, my future, uncertain. I decided there and then to take each day as it comes and never to be beaten! And to stay positive and strong.
Shortly after I got home a fistful of hair fell out where the coils had been placed. It was nothing to worry about and soon grew back! Visitors exhausted me; I couldn’t cope with washing and getting dressed without having a rest in-between for weeks. And when I managed to get up and dressed everyday fatigue plagued me. Thoughts of going out of the house on my own were daunting; the first time I did was planned with military precision! When out of the house I felt fatigued really quickly, I felt disorientated, dizzy and panicky. It felt like everyone was rushing toward me aggressively, my reactions were slow. I was noise sensitive light sensitive and I clung onto who ever I was with. Then there was the long pause in conversation whilst I word searched, the stuttering and short term memory loss. When I eventually got to drive again where had I parked the car! (Post-its are a wonderful invention and for me have been a life saving one!)Then there is the ‘brain fog’. Even now at times it still hurts to think!
Recovery has proved challenging, it’s different for all of us. I’m still adapting. I have two wonderful daughters and friends who have been prepared to take on the ‘new me’ and adapted with me without judgement. I had other friends who were (sadly) not prepared to and didn’t! A good friend of mine always says to me that if I had a bandage on my finger I would get more sympathy. But this recovery of ours is not called a hidden illness for nothing.
There are still times when I feel self conscious, sure it’s obvious that I’m searching for my words, or having difficulty getting the words out. And that the brain fog has taken over and I need time out! Times too when the hot flushes are unbearable, the night sweats even worse! But hey, so long as my platinum tiara stays put, I’ll cope!
The first time I went supermarket shopping was a nightmare and for a couple of months fatigue got the better of me. Then one day I got into a wheel chair and had my first taste of semi independence, I never looked back. I soon graduated to one of those battery operated scooter things that have huge baskets on the front! Liberated at last! I knocked over rail after rail of fashion in M&S, got disowned by my pals but was the envy of many a husband of a shopoholic who fought to try a 3 point turn for me when I got stuck. When things got really bad I would pop over to the café where a very understanding member of staff had assisted me once when I’d had fatigue. She‘d arranged for chairs to be put near the café entrance so someone like myself could seek refuge if there was a queue.
My world continues to change in ‘baby steps’ and there are times when I think I might never improve beyond the now and I grieve for the life I lost. But I’ve learned to celebrate every milestone. Recently I walked up a very small part of Catbells -a fell in the Lake District. It felt like a mountain, I had a huge smile on my face and my heart sang as I surveyed the magnificent view from where I sat. Life is full of fabulous firsts!
I am grateful to all those At Hope Hospital who gave me back my life. I believe I was in the best place possible and have received excellent after care so far. I am grateful to the specialist nurse who gave me the address of this site of which I have been a ‘silent member’ since last year. I haven’t been able to write my story up until now and I have no idea why!
I would like to say a BIG THANK YOU to all of you on this site for your input. You have been a constant source of inspiration to me. I think you’re all courageous.
I’m proud to be one of a very special group of people known as a SAH SURVIVOR.