Myasthenia Gravis and me.
The word ‘disease’ has always made me very uneasy. Just reading it now makes my stomach churn, even after all these years of being diagnosed with one. More than that, it breaks my heart. To think that my own body is attacking itself, and not being able to stop it is one of the most frustrating and hopeless feeling in the world.
I used to be a very keen runner. I ran every night, and I was in my prime when I was running cross-country at school. I desperately wanted to be the picture of health, healthy was all I aspired to be; because I knew that when I was healthy, I was happy. Having suffered from severe anxiety since the age of 7, and later some bouts of depression, running was my escape, because the emotional baggage I was carrying seemed to lighten when I ran.
However, at the beginning of 2013, I noticed that I was slowing down, which seemed very odd considering that I was training harder by the day. I brushed it off and trained even harder, because deep down, I knew something wasn’t quite right, but I refused to face it. It wasn’t until about four months later, when I came last in a race with the county that I realized that my body was really struggling. I used to be one of the fastest, but now I was significantly falling behind, and that‘s when the panic really started to set in.
Still, I continued to train and was desperately trying to find any excuses over the fact that my legs were not working as they should. I also started to notice extreme tiredness, which I blamed on puberty, being fifteen and full of hormones. But come July, I was at a social event, when I started to notice my vision becoming blurry. I didn’t think much of it, blaming it on the little amount of alcohol I‘d consumed. But over the course of a week, my doubled and blurred vision still wouldn’t budge, and the tiredness worsened.
Then, I woke up one morning and noticed that my left eyelid was closed, and nothing within my power could open it. I found it very odd and very frustrating, but I just wore an eyepatch, went to work and made an appointment with an optician. But as the days went by, I realized that I couldn’t greet the customers with a smile. It felt like my body had completely forgotten how to smile. I went to the doctors and was diagnosed with Bell’s Palsy. Although this made me feel better in the sense that my symptoms now had a name, it still didn’t explain the extreme tiredness I’d been experiencing. The diagnosis did not feel right.
Shortly afterwards, I went to a party, wearing sunglasses to hide my eyes. This was when reality really started to set in. I realized that when I was trying to make conversation, my speech would become very slurred. It felt like I had to force the letters out of somewhere deep inside me, and when I finally managed to get them out, they would turn into slush. Trying to avoid conversation, I turned to pizza and tried eating. But I couldn’t chew to save my life. The best way I can describe it is, when I tried to close my teeth together, it felt like pushing a plus magnet against another plus. It felt physically impossible to close the gap. So I had to spit the pizza out.
When I arrived home that night, I tried to drink some water, thinking it would sort out my vision and my speech (how naïve was I!). This was a big mistake. I couldn‘t even hold the water with my cheeks, and as I choked, I quickly realized that I could no longer swallow either. I had also lost control of my tongue, and it felt as though I was going to swallow it. It was all too much to take in, so I went to bed before I would notice anything else so badly out of place.
The next day, I was referred to the local hospital. Here, a young doctor was certain that it wasn’t Bell’s Palsy, and sent me to Alder Hey hospital in Liverpool for some further testing. Within half an hour of arriving at Alder Hey, I was diagnosed with Myasthenia Gravis. I was informed that I would spend the next two weeks at the hospital, but little did I know that this would turn to four months.
I was put on a high dose of steroids, Pyridostigmine and started an IVIg course straight away. By now, my legs and my arms where no longer functioning properly, and I couldn’t hold my head up. And just as we thought that things couldn’t get any worse, within a week of being admitted, I had the myasthenic crisis. This meant that my breathing muscles had stopped working, and so I spent the next five weeks in intensive care, desperately clinging onto life. By now, I couldn’t move or breathe on my own, and I was completely mute. I suffered numerous amounts of pneumonias, bad infections, collapsed lungs you name it, and my family had to say their goodbyes on numerous occasions. Although I struggled immensely with fatigue, I fought off every desire to sleep, as I truly believed that I was going to die in my sleep. When I did manage to get some rest, the dreams were so vivid and heart-breaking that I’d end up in a worse state than I was in before attempting to sleep. For the next four months, I wore a CPAP to help me breathe, and I was tube-fed. I couldn’t even moisten my mouth with a damp cotton wool as it was too dangerous. Although I couldn’t move or speak during this time, I was lucky enough to be able to write a few words at a time, so that was my only source of communication with the world.
I was put on Azathioprine, had numerous courses of IVIg, over 20 plasma exchanges courses, two blood transfusions and countless courses of strong antibiotics. But nothing seemed to be working. I was due to have my Thymectomy in the second week of October, so all my hope clung to this big operation that breaks through the breastbone. Turns out that I had an ancient form of Thymoma, a non-cancerous tumour that’s believed to play a big role in patients that have Myasthenia Gravis. The tumour had stuck onto the lining of my heart, so they removed the gland, the tumour, the heart lining and glands from behind my ribs that experts believe contained some thymus.
After the operation, I continued to take one step forward and two steps back, but I started to slowly recover. Needless to say, this was a three year long recovery. Three years of MG symptoms, an extremely swollen and hairy face, weight gain, a buffalo hump, acne, perioral dermatitis (all side-effects of high-dose steroids), and bad depression. It wasn’t until 2016 that I was feeling good again, and it wasn’t until 2017 that I was feeling great again. So great that I was running 16 miles a week, practicing to take part in a 10k run as a way of saying; ‘I beat MG!‘. But, at the end of July 2017, the symptoms came back. Not as bad as they were, but they were back, and that was enough to bring all the memories that I‘d worked so hard to subside back.
Although I can never thank Western Medicine enough for saving my life, I‘m doing something different this time around. I‘m not going to up my steroids, only if completely necessary. Instead, I‘m going to heal myself. I strongly believe in the body‘s ability to heal itself, and it’s now my responsibility to establish the best environment possible in order for my body to do just that. I‘ve been following the Autoimmune Protocol since the beginning of October, and although I‘ve seen some positive changes in my body, the symptoms are still there, stopping me from living a normal life as a nineteen year old girl. And I refuse to accept that this is the way it’s going to be from now on. So I‘m going to alter my diet, focus on some emotional healing, and I‘m going to beat my disease.
And so, I‘m writing this blog to gain some well-needed mental clarity, and in hope of helping others that are also suffering; not only those with Myasthenia Gravis, but with any kind of autoimmune disease. I can’t tell you how much I want to help others, and if I‘ll be able to help just one person on this journey, it will all be worth it. I invite you to follow me on this journey, to always be kind, to share some personal experiences and to support my decision to turn my suffering into something positive.