Be more compassionate. Be kinder
Now onto my journey…
From battling a complete mystery to fighting something completely out with my control living with this disease is draining, hard, testing, challenging, difficult… the list goes on.
First it was my eye. My left eye to be precise. Strained. Droopy. Lifeless. I couldn’t hold it open, there was no strength, no muscles. “You’ve definitely taken something dodgy, maybe that shot you took was drugged” – No, I’m not drunk and no I wasn’t drugged, this is just the beginning of the longest and most testing journey. I was at a music festival when it started, so it was assumed I was drunk, maybe drugged. Luckily, as you do at festivals, it was acceptable to wear sunglasses 24/7 which kept my droopy, lifeless eye covered. That was just the beginning of the “are you drunk?” questions every time a symptom appeared which turned out to be very often in the coming years.
Second it was my smile – to this day I can still hear “oh my god, you look so evil when you’re laughing like that’ – my smile simply turned into an ugly, unpleasant snarl. I hated photos, I hated laughing, and I hated smiling. It became an impulse to put my hand up to my mouth whenever I was laughing to cover the awful snarl. Four years on, I still do it.
Next it was my voice. I physically could not speak. It was terrifying. I couldn’t hold a conversation without my voice leaving me, I could feel it building up to leave me stranded mid conversation. I could feel my words beginning to slur, my mouth begin to go numb, my lips struggle to form the right shapes to force the words through, my tongue disorganised amongst the slurring ofmy words and my drooping lips. I would lose the power to speak, my words and my speech were completely unpredictable. They would be there with me, then gone the next. Writing this now, I don’t know how I coped. I couldn’t tell long stories, I couldn’t explain my point of view, I couldn’t stand up for myself in a debate, I couldn’t explain my feelings. My personality was gone. My stories were shorter, my feelings weren’t explained properly, and my arguments weren’t detailed. I have so many vivid memories of my voice deserting me, most unforgettable was the most recent. During an individual presentation at university. Nerve-wracking enough doing a presentation for university in front of a class of 20, never mind with the added pressure that maybe, just maybe, because sometimes it doesn’t happen, that your voice could disappear, vanish… Well, it did. Vanished. Left. Departed. Gone. Standing alone in front of the class, I had no words. I had no voice. It was one of the worst experiences I’ve been through. I slurred out the words I could, I let out an inaudible conclusion and sat back down at the back of class room biting my lip preventing a tidal wave of tears from leaving my eyes. I feel that deep, dark, haunting, almost painful feeling in my stomach whenever I think about it.
Then it was my grip, my arms and my legs. A great little trio. The loss of my muscle function. Again, I really do not know how I coped. Well I guess sometimes I really didn’t. But the majority of the time I just got on with it. Fifth year exams, Modern Studies, a hall full of anxious students, exam adjudicators pacing up and down, 5 minutes into the exam… “I can’t write, I can’t hold my pen, I have no grip, I can’t do this, and I need to leave”. Putting my hand up to get the adjudicators’ attention to utter those words towards his judging ear was more nerve wracking and daunting than the exam itself. I found myself sitting in Mrs Cormacks office crying, trying to explain that I had this strange auto immune disease (I had a diagnoses by then, we’ll get back to that day in a minute) and I didn’t know what to do and was I going to fail the exam and could I go back in to the exam hall and I don’t know what wrong with me and ohhh more tears came flooding out. My hands went on to prove that it wasn’t just in exams they would let me down. They suddenly forgot how to tie buttons on my shirts, open lids/jars, tie bra straps and many many many more. That was the beginning of my grip, like my voice, leaving my on a little dessert island of fear, anxiety and distress.
The next part of my body to become encompassed by this disease were my arms. They would suddenly go floppy, almost like there was nothing in there at all, just a big, limp, lifeless arm. They would just collapse. I couldn’t reach above my head to brush my hair, I couldn’t hold my arm up long enough to apply my make up without using the other arm as support, I couldn’t tie my bra, I couldn’t shampoo my hair in the shower. They were hopeless, at times not having arms at all probably wouldn’t have felt much different. Being a waitress for my part-time job, arms are a pretty important thing to have – I was constantly worried about having to carry things or clear tables or take drinks out because of the completely rational fear that my arms would crumble.
Next my legs… When my legs first packed in and I fell to the ground, unable to stand back up was the first time my parents and I thought, yeah this is serious I need to get back to the doctors. I had visited the doctors many times to try and understand this mystery thing that was causing all these strange symptoms, but was always told these symptoms are just ‘post viral’ – I had suffered from Glandular Fever previously. Post viral, post viral, post viral! That is all I was ever told. POST VIRAL. But I knew within myself that this was something more, this was something a lot more. I continuously went back to the doctors but as the symptoms pick and choose when the surface he never saw me at my worst until one day I purposely spoke and spoke and spoke until my voice was on its way out and then I went back to the doctor and showed him I had no voice, I couldn’t speak and that is when he diagnosed me with Myasthenia Gravis, 1 in 10,000. Hey lucky old special me. So unique. I was surprisingly happy when I got that diagnoses because at least I had something to blame all these strange, weird and annoying symptoms on. I had an excuse for my strange voice, my droopy eye, my snarl, my walking out of exams and everything else. I sat at the computer with mum and type in the words ‘Myasthina Gravis’ that were scribbled on a post note from the doctor. NO CURE. UNCUREABLE DISEASE. THERE IS NO KNOWN CURE. Ok, so maybe I wasn’t so happy about this diagnoses. But on the bright side (I’ve had to search for a lot of ‘bright sides’ on this journey) I was going to get medicine that was going to help the symptoms so at least I had that going for me.
This tale of my Myasthenia Gravis journey isn’t in order, has no rhythm or rhyme and is not organised but the unplanned and unstructured nature of this narrative almost seems similar in character to the random, irregular, sporadic symptoms of my disease.
So just bear with me. It is also only documenting about 40% of my symptoms, feelings, experiences but there is no way in this world I could write about everything or all my feelings. Four years of being taunted by a strange, rare disease comes with a lot of feelings and experiences. Surprisingly.
There are so many haunting memories of when this disease played havoc with my life, during driving lesson when I couldn’t lift my foot to the peddle, at parties where I couldn’t hold a conversation, during Christmas dance photos where I couldn’t smile, on water sports trips where I had no strength in my arms to pull myself back into the boat, not being able to dance in heels without waiting on my legs to collapse but for the past four years despite incident after incident. I managed to cope, I got on with it. As hard as it was and as horrible as all the times it reared its ugly face. I managed. Up until May 2014.
I was the worst I had ever been. And the worst I ever hope to be. I did not have the strength to move myself out of bed in the morning, I couldn’t swallow, I couldn’t chew, I couldn’t speak more than 2 sentences, I was struggling to grip onto things, I couldn’t carry things, I struggled to drink of a glass, I couldn’t brush my teeth – essentially, any basic, easy task… I couldn’t do it. My muscles were redundant, useless, and lifeless. You could make a close comparison to a rag doll.
Consequently, I was admitted to hospital for a week and hooked up to an IVIG drip. (Still not 100% clear on the medical side of things so I’ll just stick to the personal stories).
I spent the first night in the bed in the corner closest to the door. I was the youngest by about 60 years. Nights of no sleep due to excruciating head aches and throwing up, hours of my arms being harassed by needles, nausea, fatigue… Despite all that it helped take me out of my worst and lowest state.
The next few months were fantastic, I felt amazing, I was back to normal and I could do everything I couldn’t only a few weeks before! Following the treatment I was put on Steroids in order to tackle the cause of Myasthenia Gravis with the aim to boost me into remission.
This is when my next battle started.
For the first few months it was amazing. No side effects. Nothing bad to say at all. I felt brilliant. Music festivals. Holidays to Spain. Lots of work. Fun. Summer. 20th birthday.
But then the side effects started to creep into my life, acne all over my face, weight gain all over my body, ‘moon face’ – the rounding of my face and a roller coaster of emotions on a daily basis. At the moment they are all at their worst. It’s hard to cope with, not only because I obviously don’t want to gain weight or have acne but the fact that it is completely out with my control. From all my symptoms being a mystery and not knowing why or what was causing them to battling side effects completely out with my control, it’s hard. Very hard. It’s hard to stay positive when you struggle to look at yourself in the mirror or photos of yourself only a few months ago. It’s hard to be so self-conscious about your face and acne that you have to re-apply make-up constantly throughout the day. I think what gets to me the most is what people are going to think when they see me, this ballooned version of Fern and I know I shouldn’t but everyone has those feelings. People make judgements without knowing what is really going on with that person.
It’s hard but the only thing that is keeping me going is that I truly believe there is light at the end of the tunnel and also I suffer very few to no symptoms of Myasthenia anymore, and I guess that was the aim right? So to put up with these side effects for the interim are the least I can do in order to live without Myasthenia. A girl can dream.
The future is a mystery, unknown. Over the past few years, I’ve been at my lowest, my worst, my darkest and it’s not been easy on me, or my family. However, everything has a silver living right…and having Myasthenia has brought so many unbelievable people into my life, opened my eyes to so much, changed my outlook on life and so much more. I have met people from all over the world that have inspired me, encouraged me and supported me. I have learnt to appreciate the little things in life, appreciate what I have, see what I am capable of and how good life really is for me. I’ve seen my inner strength, an inner strength I didn’t know I had. This journey has brought my closer to my family and friends. I wouldn’t be where I am without my mum, dad and brother. They have done everything within their power to help me. Everything. Absolutely everything. The really are no words to explain how I feel about them. I have a completely different outlook on life after the past few years. I’m almost in a paradox, I’m happier but I’m not, I’m healthier but I’m not.
I’m ready for whatever else this stupid disease wants to throw at
As my brother once told me my track record of getting through bad days so far is 100% and that is pretty good.