Tag: illness
One year on from encephalitis
A video of my encephalitis story
Anti-NMDA receptor encephalitis is a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. NMDA receptors are proteins that control electrical impulses in the brain. Their functions are critical for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc), also known as autonomic functions.
Lucky
Add a k to my name
What do you get?
Lucky.
That’s what they call me:
Lucky to be here,
Lucky to have a voice,
Lucky to be alive.
I smile sweetly and agree,
That’s me, I think to myself, the luckiest person in the world
And I am … lucky to be alive.
My heart breaks when I hear stories of those who weren’t so lucky.
The families left behind after this illness came and snatched their loved ones from them without warning or remorse,
The friends who didn’t get to say goodbye,
And the souls lost during the prime of their lives; the places they never got to see, the people they never got to meet, the dreams they never got to fulfil.
If I could have sliced up my luck and shared it with every one of these individuals I would have.
If my luck had seen me first in the Grand National I would have split my winnings with every single person affected by encephalitis.
So I guess all of us who survive are the lucky ones. We should be grateful. We should be happy with what we’ve got.
But you can’t tell me that you have been blessed with good luck when you no longer recognise your parents’ faces.
You can’t tell me you found your pot of gold when the end of the rainbow means you lose all of your most precious memories.
You cannot tell me that you hit the jackpot when your brain feels heavy and your limbs no longer work.
Luck is defined as producing a good result by chance,
Are any of these things a good result? Is surviving purely on steroids and other drugs for the rest of your life a good result?
Are the continuous trips to the hospital a good result?
Is losing months of your life, months of opportunities, and months of memories a good result?
I cannot count the amount of people that have said to me ‘well, if the problem with your leg is the worst of it then it’s no big deal really is it! You’re so fortunate!’
The worst of it? The problem with my leg is the worst of it? The problem with my leg is the best of it. The worst of it is having lost months of my life, having to pull out of my university course, having my family sit for hours at my bedside not knowing if I would ever wake up. The worst of it is being isolated inside my house day in day out whilst my friends are all out achieving things and going places. The worst is watching the world go on as I sit watching and sinking in my own depression. The worst of it is actually feeling my heart ache as I contemplate the life I should be living.
I’m sorry, am I making you uncomfortable?
I hate to be ungrateful, but I wouldn’t call what I’ve been through lucky. Don’t get me wrong, it could be worse. A lot worse.
But it could be a lot better.
When my neurologist told me my recovery had been remarkable and like nothing he’d ever seen before and that I was one of the lucky ones I smiled sweetly and agreed.
But I didn’t feel lucky.
As I picked up my crutches and hobbled out of his office a tear fell down my face. I was meant to be happy now. I was meant to feel joy. My encephalitis had gone, for now at least. But as my foot dragged helplessly along the floor as sharp spasms travelled up my leg like a knife stabbing me, my heart felt heavy and numb.
Unlucky is defined as having or meeting with misfortune.
I can’t help but think that this is somewhat of a better description for all of us affected by encephalitis.
But we shouldn’t dwell on these negatives. After all, not everyone gets a second chance. Not everyone gets to stare death in the face and come back fighting. I cannot compare for even one second the journey that I am on to the journey of someone who has lost their life to encephalitis. But just maybe, there are no winners in this race. Maybe we all lose something.
Life after encephalitis
I don’t know how to put into words the feeling that your life has been completely spun on it’s head. I don’t know how to explain actually losing your mind. I don’t know how I can tell you about the nightmare of being trapped inside your own head for months, unaware of anything going on around you. But I can tell you what happens next. I can tell you what life is like when you lose yourself completely and I can tell you how you go on when your days seem pointless and lonely.
I wake up at the same time every day, not to go to work or university, not to go for a run or to cram for a test, I wake up to take a concoction of medicines to prevent me from succumbing to my seizures and controlling the agonising pain I face on a daily basis…well to some extent anyway. I watch my parents go to work as I am now living back with them in my childhood home, despite others my age being engaged, married and even with children. Then that’s it for another day, how do I occupy myself for the next 9 hours alone in a 3 bedroom house in a remote town filled with 2500 residents, 90% of who are 40+?
Not that it matters where I am, I could be in the centre of London and still be resigned to house arrest. This was not the way I envisioned my life to be at 21. I thought that I’d have just completed my Criminology degree and have graduated alongside my friends at the University of Leicester but instead I sat in my bedroom watching my fellow course mates collect their certificates one by one on the universities live link on Facebook. Of course, I am happy for my friends’ success but I can’t pretend that with every name called I didn’t feel another stab to my heart. With every congratulations message I sent I couldn’t help but think that should be me. I worked just as hard. I spent hours upon hours revising for my A levels so that I could secure a place at that university, I deserved to be there, I deserved to graduate.
Some days I feel as though I’m being swallowed by depression, the future is bleak and uncertain; every headache is a gigantic worry. I watch the world carry on around me as I stay stagnant and alone. My friends are all moving on and I feel bitter and jealous with every Instagram post or status that I see. I can’t help it, I should be grateful to be alive but on some days it’s hard to feel ‘lucky’ when the life you’re living is barely a life at all.
I don’t want to hear about how your boyfriend hasn’t text you back, to be honest I don’t give a damn about boys at all anymore. There is so much more to life than being someone’s girlfriend and there is so much more to life than obsessing over whether someone’s ignoring you or reading into their response to your message until you drive yourself insane. Drive yourself insane with something that matters. I don’t want to hear about how smashed you got last night, I don’t want to hear about how you’re killing yourself slowly drinking to excess, nobody is impressed. There is so much more to life than spending your money on something you will remember in the morning as nothing more than some snapchat stories and a blinding headache. Believe me, I’ve been there, I’ve wasted so many of my good days focusing on these trivial things and now I realise that the happiest memories I’ve had didn’t revolve around a boy and they definitely didn’t revolve around being intoxicated.
I can’t bring myself to focus on minor problems anymore and to hear other people complain about petty things is like hearing nails scrape down a chalkboard. If you are able to get up in a morning and go where you like and see who you like, you are extremely fortunate. If you are able to walk to the shops when you feel like it, you are extremely fortunate. I fully understand that every problem is a valid problem, but having experienced what I have experienced and learning more and more about other peoples’ experience with encephalitis, all I can say is that some peoples’ problems are more valid than others.
Every day is a challenge but it is a challenge that I keep to myself, when people see me hobbling along on my crutches with a splint they will simply think that I have broken my leg. No one will know that my foot is on fire, the sharp stabbing pains complete agony and that when I take my splint off at night my foot hangs like a piece of spaghetti. No one will understand that I may be on these crutches for the rest of my life. When passers-by ask ‘what have you done then?’ I will laugh and answer ‘all sorts’ because if I were to tell the truth we would be stood there for hours. Besides, it is a lot harder to explain an illness that cannot be seen. How do you describe to someone who has not felt it that your brain felt like it caught fire? How do you tell someone that you lost control of every emotion, every action, and every thought?
Of course, I have had some amazing support; my parents have gone above and beyond to help me on my road to recovery. My mum has spent hours completing a multitude of forms for me for everything imaginable. She even has to help me in and out of the shower every night. My dad and grandparents take me to every single hospital and doctor’s appointment and I couldn’t be more fortunate to have such a loving family. My sister, Hannah and I have become even closer since my illness and she has been a huge help in motivating me and I couldn’t be prouder to be her maid of honour.
Friends too have rallied round with words of support and helped me to leave the house for days out when possible but I’d be lying if I said that peoples’ true colours hadn’t been shown. People who I thought were my some of my closest friends have fizzled out into nothing, maybe because I’m no longer a crazy party animal or maybe because they simply don’t see me anymore so out of sight out of mind. Had one of my best friends been hospitalised and close to death I know for a fact I would have been on the next train to visit them and would have made a conscious effort to keep in contact with them every single day to see how they were doing. But situations like this make you realise that you can’t expect of other people what you would do for them. Not everybody has the same heart as you. In contrast to this, many people have stepped forward in ways that I could never have imagined and it is clear to me now who my real friends are.
The first month or so that I was discharged from hospital I felt as though I had lost my identity, I was dressed in clothes that didn’t belong to me and no longer wore a scrap of makeup or did my hair. I was scared every time I looked over to my desk and saw the piles of products that I no longer remembered how to use. Something that had come so naturally to me to do every single day, I had no idea if I would be able to do again. It’s things like that which you take for granted, things you do each morning without a second thought. Although with time I fell back in love with the power of makeup, it is safe to say that this is no longer a priority to me, whereas before I was ill I would spend 2 hours a day getting ready, even for a one hour university lecture, now I only wear makeup about once a week. We are more than a contoured face and a strong lip even if we feel like a potato without it.
I avoided going on my laptop for about three months, I couldn’t face the thought of trying to type or having to see the thousands and thousands of words of work I had stored on there. Similarly, it took me a while to become accustomed to using my phone again and to begin with my texts were slow and hard to understand. Thankfully, with practice and perseverance these things have come back to me and as I have mentioned before, at one point I didn’t know if I would ever be able to write like this again.
I understand, therefore, that I am one of the lucky ones. My memory loss is confined mainly to the months that I was in hospital, months that on reflection I probably would not want to remember anyway. My hand eye coordination is unaffected and I recognised my parents and friends straight away when I came round. I read stories of other peoples’ experiences with encephalitis and I know that I could very easily have died. But I won’t pretend that I feel lucky when I see everyone elses’ lives going on as normal as I am left behind. I know that there is hope for my future and I know that with strength and determination I can still fulfil my dreams but the journey ahead is a long and hard one. It is still early days.
The encephalitis effect
I experienced my first migraine in the summer of 2014 – a sharp and blinding pain to one side of my forehead, which felt like I was being stabbed. My brain was screaming at me, and I couldn’t shake the nauseating feeling that came with it. These migraines continued sporadically for the next couple of years, often occurring a couple of days before THAT time of the month, so I put it down to simply that, they were just menstrual migraines – potentially the result of the contraceptive pill I was on.
However, by 2016 I was experiencing pain like never before. Migraines that stopped me from leaving my bed other than to be sick, having to skip lectures and seminars because I physically couldn’t stand the light. The pain didn’t just stop in my head, it travelled down my neck and through to my wrist, and no amount of ibuprofen, paracetamol, deep heat or cooling gel would make any difference. By the summer holidays I was experiencing these migraines every single day but just kept putting it off as the hot weather or a bad night’s sleep.
When I began my third year of studying Criminology at the University of Leicester, things were seemingly fine. I enjoyed a few nights out in fresher’s week as normal student, and had begun planning Halloween costumes with my housemates. I have vague recollections of the semester beginning, and arriving to seminars extremely tired and struggling to stay awake during these. On reflection, I have no idea how I managed to get to and from university safely.
Although the next period of time is a complete haze to me, I know that I suddenly became very secluded from my two housemates and spent the majority of my time locked alone in my room. I avoided meal times and socialising – something that was very out of character for me as I was always the life and soul of the party.
On the 13th October 2016 in the early hours of the morning I woke up and began screaming the name of my housemate at the top of my lungs. “BECS, BECS, BECS,” I cried, but nothing else would come out of my mouth. I was extremely agitated and panicky and no one was really sure what to do. My housemate contacted my mum who told her to send for an ambulance, and I was taken to Leicester Hospital. Once there, they suggested that I had simply had a panic attack and sent me back home. How wrong they were…
I rang my mum later that day and struggled once again to speak to her, constantly apologising to her for no reason. During this time I sent some bizarre text messages to my friends and sister which made no real sense. The next morning I had deteriorated more and my parents came to collect me. When they found me I was sat sobbing on my bedroom floor. I was surrounded by clothes I had torn to pieces, and other belongings. When asked what was wrong I cried to my dad “I’M FAT, I’M UGLY, I DON’T HAVE A BOYFRIEND, I DON’T HAVE A JOB, I CANT DO MY DISSERTATION.” My eyes were wild and I was shaking, but no other words would come out. I have no recollection of any of this – all I remember is a bright shining light in my face. I later found out that this was my dad’s phone as he filmed me with the flash on to show to the doctors.
I was put into my parents’ car and they drove me to various hospitals – Lincoln, Louth, Grimsby etc., none of which would take me due to a bed shortage. During the car journey I could not speak but was robotically singing along to the radio. I also attempted to escape from the car as it was in motion.
Eventually, I was accepted into Boston Pilgrim Hospital and then at a later date Lincoln County Hospital, where I stayed for three months. During this time I went completely insane. I stripped completely naked and ran through the ward, as well as screaming random things such as “ORANGES, ORANGES, ORANGES.” I became completely childlike and aggressive, completely out of control of my own emotions and actions. I had completely lost my mind.
The doctors all thought I had suffered an extreme mental breakdown, and sectioned me immediately – giving me a bed on the Pete Hodgkinson Ward.
I had no idea what I was doing or saying, and have no recollection of any of this period. There are minor flashbacks of my dad, sister and uncle sat by my bedside, despite the fact I had many other visitors than this practically every single day.
Later, I went into a catatonic state characterised by muscular rigidity and mental stupor or appearing to be in a daze or stupor; unresponsive. I was living off multiple tubes and no one was sure whether I would survive, or what state I would be in if I did wake up. I also experienced numerous seizures, including five on my 21st birthday.
After being in this state for a long period of time, my mum and dad were informed that they had to make the decision whether or not to sign papers which would allow the hospital to perform Electro-Convulsive Therapy (ECT). This was a procedure in which electric currents are passed through the brain, triggering a brief seizure. Amazingly, I came around after just two rounds of ECT. Usually this takes double figures and huge amounts of steroids being pumped into the body.
During my time in hospital I fell out of my hospital bed and onto a radiator pipe for 30 seconds which resulted in a 10cm third degree burn to the same level as someone who’d been in a fire. Also, when I finally came round my left leg was in absolute agony and my foot was completely limp (foot drop) meaning that I could no longer walk. It is unclear as to whether this was a result of the fall or of the illness itself.
When I was eventually discharged from hospital a couple of days before Christmas, it is safe to say that I was not myself. My memory of the previous months was pretty much non-existent. I just remember being scared of the other patients around me as they were all also suffering with varying illnesses and saw me as somewhat of a novelty, being much younger than them. It was as if each day in hospital was only three seconds long and in those seconds I would either be handed medicine, or turned over in my bed and then everything would just go black. I had vivid and confusing dreams which made no sense and were often scary. My speech was impaired and I struggled to complete a sentence or find particular words. The thought of typing, writing or reading was completely foreign and I couldn’t even sit down and concentrate on a TV programme. I found it hard to stay awake for any period of time and found myself spending most of the day asleep. I got around using a basic splint and zimmer frame, and had to use a commode downstairs in my house as stairs were a huge problem.
In January 2017 I was diagnosed with Anti–NDMA Receptor Encephalitis, which is a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. NMDA receptors are proteins that control electrical impulses in the brain. Their functions are critical for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc.), also known as autonomic functions. This is the reason that I seemingly went insane.
The damage in my leg was later revealed to be damage to my sciatic nerve which may or may not heal itself after 2 years. Walking is now a huge challenge for me and I am awaiting a bespoke splint which is being made for me to replace my current one that I use alongside a pair of crutches. I am in constant agony with my leg, despite having tried various pain medicines. I am also on various other drugs to help control my seizures.
Although we could not have foreseen this illness other than being more vigilant in getting treatment for my migraines, on reflection there may have been multiple factors leading up to it. Namely, I had been extremely anxious and depressed for numerous years as a result of being abused and raped in my late teens. Furthermore, for many years multiple fake accounts of me had appeared on the internet on websites such as Facebook, Instagram, Twitter and even Plenty of Fish. Someone had also sold a fake magazine article about me. It was later revealed that this same person had been doing the same thing every 3 months for 3 years with various publications, and had even tried to sell a story that I was having an affair with Katie Price’s husband. This caused extreme stress and on top of this the everyday stresses of student life were applying a lot of pressure on me.
Because of missing three months of university I was unable to finish my degree this year and because of my impairment I will not be able to pick it up again next year. However, I am hopeful that by the year after my condition will have improved enough that I may finally get my BA in Criminology.
If you had asked me to type this seven months ago, or even five months ago, I wouldn’t have even known how to turn on a laptop. I am extremely lucky and grateful to be in the position I am, despite my life having taken a turn that I would never wish on anybody.
Lucy Dawson 