Hannah was affected by Anti-NMDAR encephalitis. This is her story:
One of my first memories of waking up was looking at the door beside my bed. I couldn’t move, my fingers were locked together like cement and my mouth was glued shut. I thought if I screamed I could maybe wake myself up from this nightmare, I think I genuinely thought it was a dream. How could this be real? Am I dead? The unfamiliar world around me was so blurry, it was hard to make out where I was and why I was there. My last memory was being admitting it a psychiatric hospital three months previous.
The day I was admitted into the psychiatric hospital is a day I’ll never forget. To this day I still get nightmares, even one year on from getting sick I still wake up in a panic screaming ‘help’. I woke up that late august morning, days after celebrating my 21st birthday in horrific pain. I couldn’t get out of bed, not because I didn’t feel like it but because the muscles and bones in my body wouldn’t work. My brain couldn’t send the signals to my body to move. I was paralyzed both physically and mentally. At this point I only had one to two words which was mainly ‘help me’ or ‘what’s happening’. If I tried to say anything else, my words were slurred, stuttered and incoherent. It was extremely frustrating. I lay in bed, scared and alone. At this point I had been begging for help for up to two months now to which I received nothing but judgment. I have a vivid memory of my mam telling me I had to go into the psychiatric hospital. She told me to pack for two days, little did I know it would be 105 days in hospital. I sat on my bedroom floor, my room a mess which depicted how my life was at the time. An important relationship in my life was crumbling right before my eyes and the passing of my granny just a month previous, it made sense why everyone thought I was having a mental breakdown, but I knew before anyone else.. before any top consultants, I knew I wasn’t mentally sick.
If I could offer anyone advice, even if your reading this and you’ve never been sick. Don’t go to sleep on bad terms with someone you love. I did, I fell asleep for 3 months and I almost didn’t wake up to reconcile with them.
August 2017. Myself and my mam and dad on my 21st birthday, just 12 days before I was admitted into hospital. In this photo I had one to two words speech and I was on Xanax and Lexapro.
The moment I walked into the hospital, checked in and walked out of the lift into the terrifying psychiatric unit that was forced upon me, I knew I had walked into a death sentence and I knew I wouldn’t make it out alive from this hospital. Many, many ‘important’ people assessed me and scribbled down notes about me as if I was some sort of animal, questioning my every move. I remember I was brought into a bright, warm room.. windows everywhere and the light shone through the windows burning my eyes. Little did I know at the time, my brain was damaged and I would suffer severe sensitivity to light. However, the people assessing me didn’t give me any allowances for finding the light distracting. A psychologist and a student sat with me trying to get to know me, trying to find a trauma in my life that could of ignited this sudden mental break down. I didn’t really appreciate being a case study for this student, a case study of my descent into madness. The psychologist continued to snap at me for flinching and not being able to answer her questions with my slurred speech, I don’t think she could or wanted to understand I physically couldn’t get the words out and if she found it frustrating, I found it much more frustrating! You can’t begin to understand the frustration of being told your depressed, psychotic and being forced into a psychiatric hospital against your will.
October – November 2017. I took a bad turn and I fell into a catatonic state, unresponsive and paralyzed. I was unconscious for 10 and half weeks.
Thankfully, after two days in the psychiatric hospital I was sent for a MRI in which they found a cyst on my brain and I was sent to the emergency department to be assessed by a neurologist. After about three weeks in hospital, I was diagnosed with Anti-NMDA Receptor Encephalitis, inflammation of the brain. In my previous blog I described my time in hospital and my treatments which was extremely difficult and touch and go for a while. After Rituximab, I woke up on the 12th November 2017. Nearly one year on, I’ve accomplished a lot.
Within two weeks of waking up I learnt how to walk again, within about two months of waking up I had regained almost all of my speech back and to this day, I mostly have my speech back but I have some delayed speech but nothing I can’t handle! My memory was severely affected. I have no memory of about 5 months of 2017, I missed out on a lot.. such as my favourite shows that only come around once a year such as ‘I’m a Celeb’ and I missed out on my final year of college and watching my nephew say his first word and take his first steps.
MRI of my brain. The circle in the middle of my brain is a pineal brain cyst
I started in the National Rehabilitation Hospital in February 2018 and they predicted I would make a good recovery but I was in a rush to be able to return to college for September 2018. I was failing all of my higher cognition tasks and I was still finding it hard to do simple things like read and write so my goal to return to college seemed like a far-fetched dream. However, I am a very determined person especially since I got sick. Repetition is key, especially when it comes to recovery.. I did speech therapy and physio therapy every day! When you don’t want to do it, that’s when you need to do it most! When you start to enjoy it, that means you can move onto something harder! I’m my worst critic and a complete perfectionist.. sometimes I can be my worst enemy but with my recovery it worked to my advantage as I was always striving to do better than my best.
Recovery is difficult, I’m not going to sugar coat it but you have to remind yourself to enjoy recovery. You are only doing this for you and nobody else. This is the time in your life where you have to put yourself first and if you’re like me and the concept of putting yourself first seems completely strange to you.. I completely understand how you feel. I think half the reason why I got sick in the first place was because I never dealt with several traumas that had occurred in my life especially in the years, months and weeks leading up to getting encephalitis. My best advice is to embrace recovery.
So where am I now in my recovery? In my last blog, I was still undergoing treatment and speech therapy, occupational therapy and counselling. So here’s an update:
I’m currently still on treatment, luckily I’m off basically all of my medication. This time last year I was on possibly 40 tablets a day! I’m only of 5 currently which I’m really pleased with. I’m on Cellcept every day, twice a day which is an immunosuppressant. I’m happy to say it will be one year of treatment on Cellcept at the end of November and my doctor is planning to wean me off it. However, there is risks with this, I still have a 24% chance of relapsing which is terrifying. I barely survived first time round. My consultant said I was days away from being permanently brain damaged and about two weeks from dying. I’m staying positive and I know if I do relapse, people will listen to me this time round and I won’t have to fight it alone again.
I finished in rehab on the Thursday and I started college on the Monday, two completely different worlds but each helping me to recover. I wasn’t ready to return to college but I wasn’t ready to come home from hospital last December but you have to push yourself sometimes and ask for as much help as possible. The college have been so supportive, I’ve linked in with learning support and I can’t recommend them enough to anyone returning to college. If I’m being honest, it’s really difficult to return to your previous life post brain-injury. I’m constantly asking myself “I want to go to class today, but can my brain go to class today?”. It’s kind of like my brain is separate to my body, it works a bit slower than how I’m actually feeling and it’s really hard to keep up with everything I have to do now that I’m back in college. If I’m tired my speech can be delayed and responding to other people is delayed. Thankfully, my friends are very understanding which makes it much less frustrating and embarrassing for me.
The 12th November 2018 marks one year since I woke up! This year, it will be a celebration compared to last year which was a very scary time for me. I had about 10-15 minute memory, I would forget where I was and why I was in hospital every few minutes and I didn’t have a clue what was wrong with me. ‘NMM.. NMD.. NMDA what?’ I used to ask the doctors every day. This year I can enjoy Christmas, which I’m really looking forward to. I was discharged from hospital on the 13th December 2017. Was it difficult? Yes, words can’t describe how difficult it was. You would think I was lonely in hospital but coming home was a whole new level of loneliness. I missed the nurses and doctors so much, I missed the catering staff, the cleaning staff even the porters that all became my family and that will always be my family! Taking that step to come home and not have that constant support was difficult but it was the best thing I ever did, it helped me improve so much in my recovery and it gave me back my independence.
August 2018. Celebrating my 22nd birthday. Happy and healthy.
