My strange story is so long and convoluted... a neurologist once told me to write a book about it, so this is just a basic outline!
When I was a child I had a very vivid dream... I was in year 3, so I was about 7 years old. I remember re-telling this dream to any poor unsuspecting person who would listen... over and over again... so the memory is still clear in my mind today, as if it were yesterday.
I had dreamt that a man shot at my head multiple times, filling my brain with tiny canon balls... my whole head was buzzing and I knew it was only a matter of time until they were all going to explode. My cousin (still in my dream) came to my rescue and hugged me, trying to reassure me. I kept saying, “I’m going to die! My head is going to explode!” And she kept repeating (in a reassuring voice) “It’s ok, don’t worry, you’re just going to die, everything’s going to be ok”. I remember thinking, “no it bloody won’t! My heads about to blow up! That’s NOT ok!” Then a booming sinister countdown started, 10...9...8...7...6...5...4... but before it got to zero, I woke up. I recall waking up drenched in sweat, my head buzzing... I had pins and needles all over and was sobbing, but incredibly relieved to be alive.
Prior to that (and after that) I had many other dreams about dying or being about to die and sometimes even being dead... and nobody believing me.
The other day I found a drawing I’d done in my teens... it’s a little cartoon self portrait... and on the right hand side of my cartoon head there’s a hole. You can see straight through the head, as if someone had shot right through it. It’s not violent or gory in any way, just a neat little hole in the right side of my head. There was another massive drawing I’d done in chalky pastels, where I’d drawn a self portrait but the top of my head is bulging, as if it’s a balloon that’s been over inflated and about to pop.
Anyway... fast forward to my early 20s. I felt like there was something wrong with me and I’d said to a friend, “I don’t know what’s wrong with me but I can’t stop thinking about being seriously unwell.”
I was completely convinced there was something seriously medically wrong with me, but at the same time I knew this would be perceived as completely irrational. So although I felt convinced, I couldn’t bring myself to go to the doctors.
A year or so later (feeling genuinely fatigued and experiencing weird aches and pains and a whole host of symptoms) I decided to go to the GP and tell them. I figured they might suspect MS (thanks Dr Google) and do a check up... and hopefully clarify things for me. I basically wanted proof that my brain was normal.
Because my symptoms sounded like the hallmarks of MS, they did a full spine and brain MRI scan.
I went to see the neurologist for the results. He said, “you don’t have MS, everything is fine, there’s absolutely nothing to worry about. We found a large mass in the right side of your brain but it’s an incidental find and unrelated to any of your symptoms... so just carry on as if you never found out about it.”
Not wanting to sound like a hypochondriac, I smiled and thanked him... and asked if there would be any follow up? He begrudgingly said he’d see me again in three months time ‘if I really wanted’ and sent me on my way.
I thought three months was perfect because I was due to go travelling for two months and could go and see him after my trip.
Trip came and went... I settled back into normal life (I had got a new job) and I was doing all I could to make a good impression at work. But for some reason I felt completely out of sorts. I was sleeping loads and being as healthy as I could but no matter what I did I felt really really tired. Tired to the point that I felt drunk. I was slurring my speech, couldn’t get my words out and had a dull ache at the back of my head.
I called the neurologist and the receptionist tried to pass a message on that I wanted to come in for the follow up. He never got back to me as promised. I chased this for a while. Eventually he said I didn’t need to be seen- that I was just anxious because I knew I had a mass in my brain etc and it was all in my head.
I was working two jobs- one job in mental health advocacy and my new job (as a support and advice worker for families affected by mental health issues).
One Friday afternoon at my advocacy job, I sat at my desk and thought, ‘what if I never came back here? What if I got hit by a bus and this was the last time I ever sat at this desk... would I wish I’d done anything differently before I left the office? Finished off any important notes? Tidied up my paper tray?’
That afternoon I cancelled all my meetings and spent the rest of the day sorting out all my paperwork and my whole desk... until I could honestly say I wouldn’t be worried if I never came back (I.e. my colleagues and manager would know exactly where all my cases were at and nothing would be left for anyone else to sort out).
My Dad had been helping me find a second opinion and I had printed out my brain scan (to carry in my pocket in case anything happened). The thing in my head was a cavernoma- they aren’t cancerous, they are basically an abnormal mass of blood vessels and they shouldn’t be a problem... unless they bleed.
Before I could be seen by a neurologist, I collapsed at work (at my new job)... in my managers car. She said I looked so sick that she wanted me to go home and insisted on giving me a lift to the station.
I got pins and needles all down one side as she was driving, head was buzzing... felt drunk, nauseous, at first I didn’t want to make a fuss but my speech was all slurred and we both quickly realised I needed help.
My manager drove to the station and called 999... Paramedics came and I remember thinking, ‘I’m really not ok, I need these paramedics to like me, because I really need them to believe me and help me’... so I tried to get out the car and greet them... I didn’t want them to think I was being a hyperchondriac so I was trying to be upbeat and smiley... but with my slurry speech and inability to walk, they thought I was drunk! The last thing I remember them saying was, “right then, how much has she had to drink?”
Luckily I’d handed my brain scan to my manager before I completely blacked out. My manager said she kept telling them I definitely hadn’t been drinking or taking drugs... and as soon as they saw the scan I’d printed, I was rushed straight to A&E at kings college hospital.
The neurologist who refused to see me got a call from Kings, requesting all my notes and scans. And my Dad called him to say I had collapsed and was in hospital... he told my Dad I had been offered an appointment but never turned up!
I underwent brain surgery to remove the bleeding mass in the right side of my brain. The mass was the size of a large walnut by the time they operated.
Turns out... my whole life, this thing had been in there... bleeding... causing all kinds of symptoms (but I was so young when it started that I didn’t know my symptoms weren’t a normal part of life). Besides, if I ever tried to tell anyone, they said I was fine and there was nothing wrong. I had tried to tell the neurologist about some of my symptoms but he had dismissed them all.
Anyway, I had collapsed at work because I’d had a really big bleed. That was October... I was out of hospital mid December (just in time for Christmas)... I was living with my parents at this time.
I spent a lot of time with my Dad, who wasn’t feeling at all well.
That haemorrhage turned out to be the best timed catastrophe of my life... because it meant I spent a whole month with my Dad before he died very suddenly at home at the end of January.
I suppose the strange thing that can’t be explained, is how (on some level) I knew there was something wrong with my brain very early on in my life. But it took a huge bleed in my 20s before anything was acknowledged.
And how lucky that’s the way it happened... otherwise I might not have spent that time with my Dad, just before he died.
We can only understand life backwards, but we have to live it forwards.
Now I have an incredible neurologist. He said I was a textbook case of undiagnosed temporal lobe epilepsy (one of the side effects of the cavernoma bleeds).
The NHS saved my life. Now I work for the NHS.
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