September 30, 2020 | By Prithima Sunasee
A NOTE FROM PRITHIMA’S HUSBAND, REELY
I connected with Tabitha at International Autoimmune Encephalitis Society through Facebook thanks to my wife’s cousin soon after my wife was evacuated to the UK. As I was trying to understand the illness better and make sense of things, Tabitha was a vital sounding board for many of my concerns surrounding the research and treatments out there and what to expect. She was always a text and phone call away when I needed her, especially when I was trying to understand the side-effects of different medications. She guided me through every assessment and report I received regarding my wife. Knowing who to turn to for support during a crisis can help you feel less overwhelmed and more able to manage your feelings and reactions, with the knowledge and support from Tabitha, brought hope and peace of mind.
So my journey starts when I returned to Dubai after celebrating my daughter’s 1st Birthday in the UK with my parents and my family in Hastings in July 2016.
Everything went beautifully and we had a great time.
My dad was battling Myeloma, a form of cancer. He had being fighting this for a while but had managed to come to my wedding in Dubai, and come to the birth of my daughter in Dubai, and celebrate her 1st birthday in the UK. He was a very strong man and during his illness he also suffered from STEVEN JOHNSON syndrome, which was when certain medications don’t react well together and cause a burning effect on your whole body, and his whole body was covered in blisters, it was extremely painful but he was always so strong and never ever gave up. He was our hero, especially mine, I would tell my dad everything and anything and he would always advise and guide me.
Once back in Dubai, I continued with my work for a trip support company as an Account Manager. I had worked in Aviation for over 15 years and it was an industry I was always passionate about.
But in November 2016 I started feeling unwell and was getting a headache, and I knew instantly this was not a normal headache. I knew something wasn’t right, but for a few days I ignored it as maybe “taking on too much stress from work”.
My dad was a retired nursing assistant and we would always run to him for advice whenever we were not feeling well, and he would tell us what to do. As soon as I told him about this awful headache I was having, he told me to see the doctor. After visiting the doctors, they said to take some pain killers and come back if the headache did not go away.
Once again I waited a few days and the headache just got worse, this time my dad said to ask the doctor for a scan and which we did, the scan was scheduled for a weeks’ time.
But before I got to that week, one night I knew I was not well at all. But I fed my daughter before putting her to bed and made sure the house was nice and tidy (I was a bit of a clean freak as some would say). Then I went to bed…
And woke up in ICU having been in a COMA, I was told that when I went to bed at night, I woke up hysterical and was crying and didn’t want to go to hospital. My husband rang our friends who lived nearby, and they came and picked us up to take me to hospital. On the way I had a seizure and that was it, my condition deteriorated, I had multiple organ failure and was put on life support.
The medical staff in Dubai were great and so were the doctors (I’m told) but no one knew what was going on with me as it was something they had never seen. Whilst in the ICU, I was being fed with a tube in my stomach and breathing through a machine. My husband spoke to my Neurologists, and in time managed to get hold of Dr Lunn from University College London Hospital. My husband and the doctors described my symptoms, and together Dr Lunn confirmed that I had Anti-NMDAR Encephalitis.
Dr Lunn then collaborated with the doctors in Dubai on treatments. But things got worse and my condition deteriorated again. They discovered I had a teratoma in my ovaries and that was the cause of the Encephalitis. There was no option, my ovaries had to be removed in order to save my life, and my husband had to make that final decision for the doctors. I was in a coma during this stage so still oblivious to what’s happening outside my very dark world.
Whilst I was hospitalised, my parents and all my family were constantly being updated on my condition as they were all worried. My dad and mum were especially worried as they were so far away.
My mum decided she would come, and my dad would come a couple of days later with his sisters (as he could not travel alone because he was quite poorly himself).
They, amongst other members of my family, came to see and support us and my parents.
My husband and Dr Lunn decided that the only place I could be treated was either the US or the UK, and as the UK was my home country, the decision was for me to get treated in the UK.
So my dad, mum and family had to go back to the UK. My dad had to get all the paperwork to arrange for my arrival and provide proof that I have lived and worked in the UK (in order for me to get treated here).
My husband really was a great strength and support, and has full faith in god and let god guide him in everything he did. He was currently working for a Medevac company based in Dubai. And for us his company were the best, they helped getting my repatriation arranged and made possible everything that seemed impossible.
Whilst I was being prepared for my repatriation, my husband had to sell up everything that we had in Dubai (our apartment, our cars, and all our household items). He managed to get a transfer with his work and get a job in the UK, although the job in the UK was 2 hours from Hastings and 1 hour from UCLH, the hospital I was being transferred to.
I finally arrived in the UK and was admitted at the University College Hospital, London. I was cared for by Dr Lunn and their great Neurology and Neurosurgery department.
Whilst at UCLH, Dr Lunn had a great team looking after me during my very long stay. For 10 months I was in a coma and had no clue what was happening on the outside world, I didn’t know who was coming to see me, what they were saying and what they were doing. I was just in a very dark place.
Finally in late June/July (after my birthday I left the ICU) and was moved to the special ward, but my memory and recollection were still very bad. I have pictures and a diary of family and friends coming to visit me, and taking me out, and talking to me – but to date I have no memory of that, even though they say I was responsive, but as much as I rack my brain to remember, it is just a big blank space in my brain. It’s a big part of a puzzle that I can never seem to fit anywhere, and remains blank and missing.
Even though my dad was poorly himself, he still made the journey from Hastings to London to see me and talk to the doctors to understand what was going on. He got my mum into the pattern of coming to visit me whilst the doctors were doing their rounds, and would call her when she went by herself.
This is one of the last pictures I have of me and my dad together. Unfortunately, my dad’s health deteriorated whilst I was in hospital and he passed away August 2017, peacefully with my mum and family by his side.
The doctors told my husband and family not to tell me about my dad in case it affected my recovery, as I was still very fragile. I was unaware my dad had passed away, and would ask my mum why my dad had not come to visit me. I would ring her at home and ask where dad was, but I was always told he was tired and sleeping. Mum kept saying “dad loves you lots and is missing you and wants you to get better soon”.
So I worked with the nurses, the staff, the physios and my Occupational Therapist Jane Richmond, who made me build my strength and helped me walk, talk, and write again. I had to learn to stand and be independent and be strong, because I was so weak from being bed bound for so long. Once I started getting my memory back I felt that I need to be strong for my daughter and I need to be strong to show my dad what a brave girl I am. I knew he would be super proud and was doing everything so I could show him my achievements.
Soon with the help of the amazing doctors, Occupational Therapist, nurses and amazing team, I started improving and was allowed to go outside with the nurses and my family.
I kept getting stronger and thinking about how I wanted to be back to normal and strong again for myself and everyone. Soon I was able to eat by myself.
Slowly I got better, and my medications were reduced but there was still a lot from what I can remember, maybe around 30 tablets a day. One of the many medications I was on was steroids. This made me put on a lot of weight, which I’m still struggling to lose; this weight gain affects your confidence big time in every way possible.
My husband and my mum asked the doctors if I could come home to spend Christmas there, and they agreed. Before this they decided that they needed to tell me that my dad had passed away.
So my mum, my husband and other close members of my family came and took me aside, and slowly explained that dad had passed away. And I think I shed a tear but nothing really sunk in, and I didn’t really understand what they were saying. So I just agreed and said that I understood and carried on with the day.
After that I went home for Christmas, and my brother and his partner prepared Christmas dinner like my dad would have done but still nothing felt right. Everyone said I’m doing very well and I will get back to normal soon. But still nothing made sense, I was back to this puzzle in my head where there were missing pieces.
Another hurdle I had to tackle was my daughter, we were very close before I was ill but when I returned home, she was very distant and was scared of coming close to me. She would let me change her or be close to her and that absolutely broke me to pieces. I couldn’t believe it and felt like my daughter didn’t love me anymore.
Whilst in hospital, my mum had been mainly looking after my daughter because my husband was working far away. My brother and his partner helped her a lot with my daughter, my brother’s partner took my little girl under her arms and treated her like her own girls, and I will never be thankful enough. My brother was a great support to me when I came out of hospital and whilst I was there for my daughter.
My mum had been shuffling between the hospital and the nursery to pick up and drop my daughter in between hospital runs, and everyone at the hospital couldn’t believe how she managed to do so much, and be so strong after what she had being through.
My mum and my brother explained to me that they had made a memorial bench for my dad at the hospice where he passed away, and took me there when I was home so I could understand what had happened and start accepting it.
My brother also waited for me to return from hospital so we could put my dad’s ashes to rest. My dad always loved the sea, so we decided to release his ashes in the sea. But doing all this and knowing everything, I still couldn’t understand that my dad had passed away.
All I kept asking is “WHY, why did he go?” And “why didn’t he come and see me? Why he didn’t wait for me to get better?” And I still to date blame myself that I couldn’t get better fast enough for him to see me, I just needed a couple of days, all I wanted is his warming loving comforting smile, telling me it’s ok, everything’s alright. I want to tell him so much and see him so much, I get very emotional whenever I sit and think. He is the one person in my life that I would have definitely like to have by my side at this time.
But this is something I’m taking my time in accepting.
When I was told about my dad, this was also the time the doctors explained about my ovaries and that I would not be able to have any children because my ovaries had been removed.
I never expected this with the encephalitis, and was totally shocked and just looked at my husband and didn’t have anything to say. I was born in Mauritius and my grandma had 8 children. Me and my cousins all grew up together, my mum and dad love children, and I love children too.
I used to tell my mum, dad and my aunties that I will have 8 children too: 4 boys and 4 girls. That was my wish, I knew it would not really happen but that’s what I always said.
When I got married I was ready for children, I wanted to have lots to give to my parents because they were already great grandparents to my niece. And they always spoilt kids, and would adorn all children in the family with so much love.
So this were my many shocks, hitting me where it hurts.
I didn’t know how to accept this news and I still don’t. I feel that I’ve let myself down, I don’t feel like a woman anymore, as wrong as it sounds, that’s how I feel. And I look at my daughter and see how much she loves playing with her little cousins, and I feel that because of me she can’t have a little brother or sister.
Every time I look at families growing, and little babies popping up everywhere, it just pulls at my heart. I miss to be a mum again and grow a bump, have a baby grow inside you for 9 months, and once the baby is born, all the joy, tears and love and laughter that comes with it.
Right now I’m starting to accept those big factors that I have lost in my life. But thank fully I have an extremely strong, supporting and loving mum by my side, alongside my best friend, my husband, my soulmate. I have very close members of my family who may be far away but are so close to me and are always there when I need them.
Today I am a stronger person, I have learnt that life can be taken from you and that you should appreciate every moment you have. And I have chosen to do just that, focus on people who are important to me and focus on my future.
I am and will be on medication for a long time, but this is something I have to accept. The two things I have constantly going round in my head are memories of my dad and the sadness of not being a mother again.
But I promise myself that I will put all my love towards my daughter and overload her with so much love, not too much that she gets spoilt but enough for me to feel content.
I don’t know what the future holds but I can say I am a stronger and wiser person who won’t be easily taken advantage of, and will be more strongly independent than ever.
I am thankful to all the family that were there to support my mum and my family during our difficult times, and we will never forget all that you did.
Your generous Donations allow IAES to continue our important work and save lives!
Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org
International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.
For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.