On #RareDiseaseDay Charity shares her journey with Autoimmune Encephalitis:
March 2018 was like every other year, I was preparing to do my spring cleaning. My husband Patrick and I, had our birthday celebrations and all our visitors had left to go home. I woke up and thought that it was a great day to start cleaning so I got out my cleaning supply bucket and cleaning supplies, recruited Patrick and we started at it. I cleaned every room in the house besides our washroom, I hated the washroom so I always left that room until last. I did my normal scrubbing of the tile in both the shower and the tub and then all around the washroom. I ended up spraying a very strong chemical cleaner in the two bathrooms and needless to say that was not a smart idea. I mixed the spray with some other strong chemical cleaners and scrubbed my tiles.
The next day was the start of a very long and bumpy road. I woke up not feeling very well, I had a migraine and it felt as though I was losing all the life inside me. I was able to eat a little bit and drink some water but shortly after I begin to vomit and was unable to keep anything down. I would wake up cold, then hot flashes and unable to function physically or mentally. At the time I was a smoker, half of a pack a day or so and I didn’t have any energy to go outside and have a cigarette. I would get very dizzy, tunnel vision, trouble inhaling, nausea, hot flashes: keeping in mind that all of this time I had one of the worse headaches or so I thought at that time was a migraine. After the first few days Patrick knew something was wrong and had taken some time off work – I visited my local clinic where I was diagnosed with some kind of stomach flu and to get lots of rest and was sent home. Patrick made a trip every day to the local pharmacy to buy me medications that I felt I needed at that time. For example, all-natural medications for, nausea, migraine, acid reflux, dizziness, fever, electrolytes, and God knows how many more. But no matter what I tried they were just a band aid to a much bigger cut.
After the next few days, Patrick took me to the local ER and they diagnosed me with the same thing – stomach flu, gets lots of rest and get ear drops because the left side of my face was hurting (I assumed I had an ear infection). So off to the pharmacy again for yet another all-natural medication (Germany is very big on all-natural things). After the first week passed, I was becoming a lot more distant with family members and losing my personality little bits at a time. I did manage to contact some family and tell them I was sick – in fact I was very rude about it (to the point they knew something was wrong); however, I did not think anything was wrong other than the fact I had a stomach flu. Then a few more days had passed and I had gotten a lot worse. I still wasn’t eating or at least keeping anything down, still unable to move, massive headache and pumping myself with medications. At this point Patrick had taken days off of work – not like I knew much about it because I slept this whole time, I would wake up shivering, take medicine until my fever broke and because my head ached so bad I could not keep myself awake. It was then we decided to visit Emden Emergency and was told if I did not get better than I would have to get a spinal tap done to check the fluid for a diagnosis. After about two weeks of feeling like I was falling apart; something was wrong other than the flu they had first diagnosed. Patrick took me to the local emergency again but because they did not have the right staff on duty they arranged an ambulance to take me to Emden Emergency Hospital where I received my spinal tap and my nightmares began.
Upon receiving my spinal tap, I don’t remember anything other than the bits and pieces that I assumed was dreams but they actually happened and to be honest I can’t distinguish what is correct and what I dreamed – I can only go by what I’ve been told. On March 28, 2018 I was admitted to the ER in Emden Klinik and 2 days later I was induced into a coma. I was diagnosed with many different predictions which were Severe Meningitis, Cancer, Lime Disease and whatever they could test me for a prognosis, I was being tested on. But in the end, they finally diagnosed me with Autoimmune Encephalitis. The next piece will be what I have been told and what I remember – I cannot guarantee the order these happened nor can I guarantee all the information is present (I will only write what I know myself).
During this time, everything was an unknown territory for my family. They did not know if I would ever function normally again, walk, talk, live a normal life, wake up with a mind of a 5-year-old or even wake up at all. For the first couple weeks I was slurring words, having tunnel vision, aching bones and losing myself. The first couple of days of being in the hospital – I was drugged up but lucid. I was able to make phone calls (contents of these calls are unknown to me) and I even managed to see famous people! Once the possibility of a psychotic disorder was ruled out and my brain was swelling often, I was then induced into a month-long coma. During this time, I managed to dream about every family member I have, I have seen family members that are no longer with us, I was present in many different places in the world and worked at many different jobs.
I am choosing to keep these memories to myself because they were my dreams, some were nightmares and I have learned to accept it on my own. During that time, I became violent, was not myself, slurred words, and losing functions by the day. I was fortunate to have Patrick by my side all the time and once I was in the hospital my mother and grandmother arrived from Canada (I did not know they are there, although I wish I had). I was then put on medications and because the swelling would not decrease on my brain I was put deeper and deeper into a coma.
I was given some of the strongest medicines in the world and due to the fact I was unable to breathe on my own I was given a tracheotomy. My mind was still there being stubborn so I had somehow pushed the first one out so I was given a second one! Every day was again unknown whether or not I would wake up or if the swelling would go down – unfortunately for me the swelling was as stubborn as I was and kept worsening. I was in a coma for 4 weeks and due to my weight, it took longer for me to wake up. I do remember vaguely being woken up by the nurse or doctor and knowing Patrick was there, he had then told me that my mom and grandma had been there too and were back in Canada.
He told me everything was going to be ok and he had only 15 minutes before they kicked him out of my room as visiting hours were almost over. I could not speak because I still had the tracheotomy in but very glad he was there. I was then put back to sleep and woken up by the nurse taking out my tracheotomy and stating I was going to another hospital and she shushed me, told me not to speak, I was doing fine and good luck! I called Patrick to tell him I was going to another hospital and he said he knew and would see me there – after that my memories were and still are foggy.
I strongly believe that Emden Klinik saved my life and Lingen Reha helped me recover.
At times I remember Station F3B in Lingen Rehab Hospital but like everything else they are foggy. I remember faces and names but cannot connect the two. Patrick had said he was feeding me and visiting me in Station F3B but I don’t remember much about it. My next full memory is being woken up in Station F0 Neuro Rehab in Lingen. Station F0 is where people learn to function again such as, swallowing, eating, walking, talking, etc. basically anything neuro related. I went from taking pain medication and having someone turn me over every 2 hours to fully waking up and knowing what was going on. My first reaction to everyone was they looked and acted like robots, like they weren’t real – I later learned that this was a side effect of the pain medications I was taking.
As every day passed, it got more clearer and I finally was able to know things and identify people – and seeing Patrick for the first time coming off medication was such a wonderful relief! I was slowly getting stronger and was now able to facetime and call my family every day. I was still on pain medication so I was very bubbly but nonetheless I knew what was going on.
During my stay at F0, I woke up with no function on my left side. I was forced to learn daily tasks all over again because at that time it was unknown if I would ever receive full function back on my left side. The first week I learned basic swallowing, eating, etc. The second week I was given a wheelchair and was told to push myself around, the third week I was transitioned into a walker (by this time I was able to walk slowly on my own but needed to use the walker for safety reasons). During all of this I took multiple neuro tests and a lot of exercises to regain my muscle strength in my left side. I only had to do one more neuro test because I scored too high so at this point it was then reduced to weekly bloodwork and exercising!
I was able to walk and do all the daily things by the fourth week of rehab. They usually recommend people to stay at least two months for recovery but I needed to go home. I worked hard and believe me I struggled but on May 28, 2018 I was homebound! I still had some limitations in my left side but was able to continue a normal life. I was fortunate enough to have my grandparents over from Canada to help me during this time because there were some things that I still needed some help with – mostly reaching up high and lifting heavy things.
I struggled with the stairs for the first little while but I think most of that was regaining my confidence to walk them. I had to learn the most basic things like taking those little steps, doing laundry, cleaning, even changing my clothes. I was unfortunate to have a bed sore when I woke up (from not being moved around enough) but with the right help it mostly healed within three weeks of me arriving home. Every day I progressed a little more, I stopped my pain medication on my own when I felt it was the right time; however, I did stay on Steroids for nine months where I was weaned off of them slowly (2.5 mg at a time). In January of this year I was finally able to be weaned completely off. I still have some tingling in my left thumb but the neurologist is unsure if that is due to my illness – I will do more testing in April.
My recovery has been the hardest thing I have ever had to overcome. I have had some side effects from the illness (such as Hypothyroidism) but nothing I can’t handle! I recovered; worked hard, physically and neurologically. I joined a Zumba group once a week, I have lost 50 kgs (About 110lbs), brought my cholesterol, hormones and blood pressure to normal, still a non-smoker, became a vegetarian (for health and personal reasons) and I am feeling great! I have had to learn some basic skills such as having patience (which I am still gaining) – in just two months it feels like I lost 30 years of experience. It was a long and hard battled journey, but I managed to find my way back!
Encephalitis affected me in many aspects of my life – for the good and the bad. I learned a lot about who I was and who I should be. Also, the amount of support I had from family and friends affected me tremendously. They travelled countries to see me when I didn’t even know they were there. I learned how strong I truly was and knew I was able to come out of this awful situation even better. I’ve learned to not waste time or worry about things I can’t change and to not take what I have in life for granted, especially Patrick and my family. I will not ever again go months without talking to my friends or family because tomorrow is unknown.
The danger zone for this illness is two years; however, I will always live with this illness and I will always feel like something is unknown but in the last ten months I have learned how to live with it and what daily measures I need to take to ensure Patrick, my family and I don’t take this road ever again.