BA is my marker. Before Aneurysm I was a very busy person in my BA life. I was a senior lecturer in Early Years Education and in the final year of my Professional Doctorate.
My Doctorate was going to be the culmination of 15 years of studying to get to my ultimate level of education. I was Programme Director for Early Years and I really loved my job which included looking at assessment and feedback for the University of Dundee.
I was just about to become an external examiner for Glasgow University and I knew a lot of people and people knew me at work and within my profession.
My son was 16 and an all round good guy, my husband and I had just helped my stepson and his partner buy their first flat together. I had dinner parties, social groups, friends and a very loving family who kept in contact despite distances apart.
In short, I had a wonderful life and bells were ringing for angels getting their wings.
In the weeks before my injury the world had gone into lockdown and my work was stressful, I had a couple of issues with double vision, I was tired and had a lot of headaches, (but who didn’t?)
I put this down to the stress of work, my son being home schooled, my husband (a hairdresser) being at home and suddenly no income AND the menopause.
The days before my injury my programme at work had gone through Programme Review. Things had gone well, so I took a couple of days off.
I was in the garden planting some seeds, it was the 14th May 2020.
I had a headache, which I was aware of becoming a little stronger, and then quite suddenly I felt like someone was trying to scoop out my left eye with a metal teaspoon.
I began vomiting and felt quite scared. My husband rang our GP and he advised getting to A&E. I want to quickly summarise this bit, as it was circumstances rather than errors on anyone’s part.
I stayed for a night, was sent home with sinusitis, went to ‘out of hours’, got some morphine and then on Monday, my wonderful GP phoned my husband, Jack, and said to get round to Neurology where an MRI was advised.
It was all a bit strange in my room at the Neurology ward, with pandemic practices in their infancy. Everyone seemed almost sceptical of my attendance and there seemed to be a question about my queue jumping for the MRI. However, as soon as my results came back it was like an episode of ER!
The room was filled with white coats, someone asked me my blood type and was on the phone somewhere.
Jack asked if he should leave, as the room was pretty crowded. Then, he left, with little understanding of what was happening and I didn’t see him again for 9 days.
I was told I had an Aneurysm behind my left eye in a superhighway of the brain called the Cavernous Sinus. It was a whopper, 19x18x18mm. I was taken by Ambulance to Edinburgh, which was surreal. I could only think about how bad the pain was but didn’t want to upset the Ambulance girls by making a fuss for an hour.
In Edinburgh, I met my surgeon who explained to me what an aneurysm was and that he had, ‘really expected me to have bled out in the ambulance’. They also found a wee 2mm aneurysm in my right cavernous sinus. I already felt like a superstar!
I had a night of terrible pain as I needed blood thinners for brain surgery. Going into surgery, on the inside I could hear myself shouting:
wait I'm not ready yet? I am not ready to die.
On the outside I faced a freezing room of people in full hazard suits, I felt terrible that they had to work in these conditions and I made some jokes about imagining they were all beautiful and super handsome!
I did not want anyone to think I was frightened. I was in hospital for nine days, with no scars as my operation was done through my groin. Steroids made me feel like a superwoman, despite having left-sided face palsy, with a wonky left eye, coming home the roads were silent which was a bonus!
As soon as my steroids wore off I was very poorly, my left eye did not open for seven weeks. I was in my bedroom, crawling to the bathroom and experiencing severe nerve pain and vertigo as well as gaps in lucidity.
I could write a book on my recovery period.
I was also very breathless, 5 months after brain surgery I was admitted to hospital due to my very low oxygen levels and went through many tests, which remained inconclusive and that it was probably myocarditis.
This remained the same until Christmas and I was admitted again, this time they found I had a congenital hole in my heart, the steroids from my brain surgery had forced blood through this hole which had been causing me no issues for 52 years, I was breathless as I had a rare condition which meant the blood was not being pumped properly round my body and was shunting from side to side meaning I was lacking oxygen, (plantopia orthodoxia), I had heart surgery in February 2021.
My recovery has been complicated and there may have been a lack of oxygen to my brain which may have impeded a fuller recovery, but we will never really know.
I tried to return to work the following September 2021 but apparently, I was the only person who thought this could actually happen.
My career was over, I would not complete my doctorate. I struggle to read for any length of time, I can experience higher levels of pain if I focus on reading, writing, sewing etc. I get fatigued very easily and too much information such as a large supermarket etc can leave me very light-headed, tired and weak.
Getting our finances straight has been tough, the Universities Superannuation Scheme have been awful to deal with and am still fighting through an appeal for my full medical pension. My income has dropped around £30,000 per year.
It is not the financial future, or retirement I had planned.
However, I only ever feel very lucky, I survived two very rare conditions during a pandemic.
My superstar, unique medical history of the past 3 years has made me feel really special. My son has made it to University and my husband has moved his hairdressing salon to a separate room on the side of our home.
We are together a lot, as my light headedness and dizziness alongside being very easily fatigued means I am still not driving.
Fortunately, we are good pals, I am now the Mrs Overall of the salon hostesses and make teas and coffees and keep fresh flowers going in the salon.
It has taken me a great deal of time to mourn my previous life, realising it has gone.
I have learned to love my garden and I volunteer one session per week at the local Trussell Trust Foodbank and one session a week at our local palliative care unit.
I am still the person who loves life,
I love people and my volunteering allows me to speak to a lot of different people each week. I have always been an optimist and whilst there have been the occasional down moments, on the whole, I just feel lucky.
My recovery is still ongoing I would say, after 3 years I have now tried a few possible pain medications but nothing has been successful, my most recent trial of Lamotrigine ended in toxic shock and a 3-month recovery from that.
I struggle to do nothing and my neuralgic pain, trigeminal neuralgia and fatigue fight me for accepting rest is best. I boom and bust and go through periods of debilitating pain.
I have read (in short bursts) lots of research about my injured brain area, pain theories and actions as my scholarly brain needed to do this in the first two years.
I think the pandemic prevented me from getting any real ‘help’, I had a neuropsychologist for the first few months but it was probably too early as my situation was so unique, we talked about the key issues in dealing with pain but my difficulty has probably been more about changing my whole life around, finding meaning, losing a career and recognition within my profession.
Now none of that really matters but I mostly find the relentless cycle of pain can be draining, for me and for my family, who have been brilliant but still feel helpless.
So now it's looking forward, keeping busy, thinking of the next ‘thing’.
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