Joelle's Story Whenever I think about my story with myasthenia, I never know if it is going to be an inspiring example of a person who overcame an obstacle and became stronger through it, or whether it is just an educational piece to show people just how quickly things can change in your life when faced with a new chronic illness. Either way, I want to share my story with you. Before myasthenia I was working in a four-star hotel as a receptionist. I was working full-time and a complete workaholic. My partner would often tell me that I lived to work, rather than work to live. However, I decided to 'retire' to reception department. It was a bit of a retirement for me, as I had previously studied hotel management, which meant being a pot wash, changing beds, and setting up weddings in the events department. I really enjoyed my new, more settled role, and its focus on customer interaction and solving problems mentally rather than physically. However, I slowly started to realise that I was more tired now than ever, even though I was doing less. In June 2016 I registered with a GP (something I had been putting off for a long time) only to be told by my first GP that I was overworked and to take it easy. Despite taking it even easier and slowing down a bit more, I started dropping things like cups and trays and stairs became harder to walk up. Two weeks later a co-worker of mine asked me about the eyes, which confused me - at the time I didn't realise I had a droopy eyelid on one side. So back to the GP I went. I saw a different doctor this time, and I was referred to a neurologist straight away. She didn't really tell me what her thoughts were, but I went straight to doctor Google to learn more. I did stumble across myasthenia, but I just thought I was being a hypochondriac, as it was too rare for me to have this. In July I went to the neurologist at my local hospital and got diagnosed on the spot after just a short examination. The appointment to this day is a big blur to me - it was kind of "I think you have this, look it up on this website, we are doing a blood test to confirm, you will get your official diagnosis in two weeks in a letter, in the meantime start this medication". All within ten minutes. Nothing really sunk in at that point. From then on I started to slowly deteriorate and I didn't know where to turn for help. I became a regular guest at my GP practice and we tried to self-regulate my new medications, as my follow-up appointment after my diagnosis was five months away. At work I was starting to struggle more and more and had adjust my working hours, receive light duties and receive extra support during shifts. In the winter I contracted a simple cold that hit me unexpectedly hard. I was struggling to get dressed by myself, to stand up from a sitting position, and my breathing was becoming shallow. It finally hit the point where, after a week off work, I called 111 and told them about my deterioration. They called an ambulance for me, and took me to my local hospital. Now trying to remember the next bit is very difficult for me. I kind of have bits of memories, but I am not sure of how exactly it happened. I remember my partner waiting with me in the corridor of the A&E. I remember having to use a bedpan for the first time ever as I was unable to bear my own weight. I remember starting to drool so much that I needed a sick bowl, and my partner was starting to wipe it up for me as I couldn't keep swallowing it. I remember being transferred to a very small bay for the night and my partner going home, as it was by now 10:00 p.m. and he had been up all day. I said goodbye to him and then I went to sleep. The next thing is just a flash of people asking me if I wanted to have a tracheostomy as I kept pulling out the intubation tubes, and I wrote on a piece of paper "Yes, put me out of it, it hurts". I am not sure when this was, or even if this was the first time they asked, but I just remember that one flash. Twelve days later I woke up in the ICU with a hole in my neck. The first two days I kept dozing in and out, and just being too tired to be awake. Once I was a bit more with it, I started writing on pieces of paper. I was telling the nurses looking after me about my life and how I would like to be cared for. I could visibly see my writing change over the next few days. My partner would visit me every day after work to bring me items that I would need. At this point I also started a diary that showed the small improvements that I would make every day, such as sitting up in the chair, being off the ventilator for a set period of time, going for a walk around. But I was still very delicate, and that meant Christmas and New Year's were spent in the ICU. One of my proudest achievements was that I managed to have my first full night off the vent during New Year's, so I breathed myself into 2017. A few days later (on day 23 in hospital) I had my trachy removed and I was moved to a long-stay ward (a renal ward since there isn't a neurology ward in my local hospital). There I started my slow recovery process, mainly on how to eat by myself again! Over the next few weeks I would have good days and bad. My main diary entries were now about food and walking to the small hospital gift shop, and dinners with my partner in the cafeteria. My personal diary showed that every three weeks I would decline to the stage of needing a very soft diet and another dose of IVIG treatment. After three declines like this, my neurologist gave up on my care, as they were not equipped to handle this. So the hunt for a different hospital to take my case was on. It was here that I decided to Facebook message myaware for help. Two weeks after contact myaware, I was moved to a specialist hospital about an hour away and I have been under their care ever since. I can't thank myaware enough for helping me move hospitals. It was a late evening transfer and when I finally arrived I was very tired and just happy to be able to go to sleep. The nurse signed me in, started my paperwork, and did my first ever forced vital capacity (FVC) test to measure how much air I'm able to exhale in one breath. My FVC was so low that I was moved to a high-dependency unit for monitoring. The next day I had a lot of lines placed into me, met all of my new doctors and nurses, and generally adjusted to my new hospital environment. The second day I had my first ever plasma exchange. Before I had it I was barely able to eat a meal, resorting to a soft diet, and finding it very tiring to eat. After day two of my plasma exchange, I not only managed to walk to the food court by myself, but also had a Burger King! It turned out that my hospital transfer was done just at the right time before another crisis set in, so we were able to catch it early and prevent it. After just nine days in the new hospital, I returned home! I could not believe the difference a specialist centre made. At home I started to try and get my life back to normal. I met friends in town for coffee, I cooked dinner and, most importantly, I was resting. I was trying to do what I could, and to hold out for a little while longer to be home for my partner's birthday. But by pushing myself further I made myself worse and ended up back in hospital on the day of my partner's birthday. And it got to the point where I had to be intubated. The hospital wanted to keep me for observation to see how long it would be for me to decline again, and to do further investigations and tests. I stayed for a whole month, and two rounds of plasma exchange this time. The pattern kept repeating. I was good for three weeks and then declining to the point of needing intubation and a plasma exchange. At this point I was introduced to my neurological care advisor who would start working with me on recognising my early warning signs, and putting in a line of communication for me to inform my new doctors about what was going on so we could start to move toward preventative treatment rather than responsive. Over the next five months I ended up in hospital a further five times. I would joke with the junior doctors treating me that I had enough intubations during this year to fill a loyalty card. I even had such a good connection with one of my ICU doctors that she would look after me every time I was there. I became such a hospital regular over those months that the staff on the wards knew me and the catering staff would remember my coffee order. As much as I enjoyed my time in hospital - because I knew I was in the best possible place and getting the best possible care - it was also very isolating, as I would only have visitors at the weekend, due to the travel time. I also struggled with the fact that all of the treatment I had undergone had drastically changed my appearance. The steroid puffed up my body with weight gain and side effects, and the lines for treatment gave me permanent scars on the side of my neck, as well as the front of my neck from the tracheostomy and thymectomy. Luckily, I was able to get help and support from myaware again. During my initial diagnosis I found out a lot of useful information from their website, and then later on, when I was well enough, I managed to attend my local support group, where I was able to share my story with others. The most useful thing for me was the Facebook groups, as it was a way for me to keep in contact with people who knew how I was feeling; and who could offer me advice when I needed it. After a year of learning and spending more time in hospital than at home I am now on the road to recovery! My treatment has been adjusted time and time again until we found a lifestyle and cocktail of medication that works for me. I only spent ten days in hospital in 2018. I am now working as a temp admin assistant on a part-time basis and doing things around the house without any problems. As much as the first two years of myasthenia were scary, it was a huge learning experience for me; about myself and what my limits are from this. I have met so many wonderful people in the hospital and during my treatment, and I truly appreciate all the support I have received.