I couldn’t quite take it in. How could this be happening to me?
Totally and completely overwhelmed. That began to describe how I felt, once I started reading about Myasthenia in all it’s glory.
Dr D said it was curable. Google and everyone within the internet said it was not.
Treatable. Manageable. Survivable. Usually.
Fuck. Fuck, fuck, FUCK.
If I was scared before, then I was petrified now. This did not look like something that was just going to go away. Unless I was supremely lucky. And being one of the 10 people in 100,000 that (statistically) had myasthenia, I wasn’t feeling very lucky. Could I be one of the few that might go into remission?
Hang on. Wait. We knew nothing for sure. Calm down, calm down. Wait for the antibody blood test results. And the EMG and SFEMG tests. They might show for sure that this was myasthenia.
But, but, but… what if it wasn’t? Wouldn’t I rather have this disease, that could be treated, controlled, managed, even if it was rare? Surely that would make me fortunate, to know so early on what I had. I read that many people who were being treated for Myasthenia were ill for a long time before being diagnosed, some hadn’t even had a definite diagnosis. They went through all the possible tests and by process of elimination, drug trial and error they got their symptoms under control. Usually. Apparently people rarely died of it anymore.
I still didn’t really want to tell people. Up until now I’d only told people how ill I felt on a need to know basis. My manager at work. My feminist radio team had to know as we took a decision to postpone the launch of our show. My husband, obviously knew. I needed to tell our kids that I didn’t appear to just have a virus, as I had previously told them. Them being all grown up and out there in the world had made it easier to keep them out of the loop and unaware of my fears up until now. Whenever they’d visited I’d been asleep so I’d hardly seen them.
I went ahead with the public rally the day after ‘90% certain diagnosis day’. The subsequent days were spent sleeping, trying to meditate and steadfastly avoiding further Google excursions. Time slowed down. It seemed to do that whenever there was little to distract me from the interminable, long days. Christmas was approaching, and our plans started to take casual but unusual shape. Usually being extremely organised, I had to put my compulsion to plan every detail aside. The kids started to get an inkling that things might be serious. They didn’t remember a time when I hadn’t meticulously orchestrated Christmas.
I told my husband that I wanted to carry on with our agreed Saturday night shift at the winter night shelter. I didn’t want to let people down. When the time came, I wondered if I would make it through the night! We agreed with our coordinator later that we’d change to breakfast shifts because of my health. I was just relieved we could continue, It was something we’d wanted to do for a while.
After finishing up our weekend by catching up with close friends from Canada, which despite my exhaustion I wouldn’t have missed for any reason, I mentally prepared to revisit the neurologist for answers.
The next day I was depleted. I was having problems opening both eyes. The vertigo was strong and staying upright seemed to take a lot of concentration. I was also getting breathless, something that frightened me; I knew exactly how it felt not to be able to draw breath since my pneumothorax. But I assumed it was because I’d overexerted myself. We arrived at Dr D’s clinic. I was on edge. Unsure what I wanted to hear him say; that I had MG or that the blood test was inconclusive.
He did the same fixed upwards gaze test to see if my eyelids fatigued even more. They did and I struggled to see his face as he told me;
Your blood test was positive. You have the AChR antibodies. It is Myasthenia Gravis
OK. It’s OK. We knew what we had to deal with now, right?
What about the nerve conduction tests, I had an appointment in 2 days, did I still need them? I asked…
Yes, they would give a baseline of weakness and could also show if it was affecting any other muscles. Go ahead with those, Dr D said .
But I couldn’t start on any medication until afterwards, it could interfere with the test results. No, Dr D agreed. He’d written to my GP detailing the medication that I would need. I needed to go and get the prescription and start as soon as the tests were finished.
He assured us that as long as I took the mestinon and remained alert for real difficulty breathing and swallowing, we could go ahead with the New Year holiday to Spain we booked ages ago, set to start in less than 3 weeks. Mestinon would alleviate the symptoms. I was to increase my dose every 8 days until I reached the desired maximum. I had an appointment to come back as soon as we returned to the UK.
Thank you Doctor.
We left his office. I was stunned. All churned up inside. Was I relieved to know? Devastated that I had a chronic, incurable disease? I didn’t know. We got in the car and I started to cry. But, as I cried my eyes completely closed like shutters and I couldn’t open them again!
I had to try to calm down. There were people to call, family and my closest friends who were waiting to know. Besides, stress and anxiety were very bad for people with myasthenia. It could worsen symptoms or even trigger a breathing crisis. I had to slow my breathing and control my distress.
After repeating the doctor’s words a few times over phone calls, I ate and took to bed. I had more tests, quite painful, unpleasant ones, to psyche myself up for very soon.
I had my diagnosis, but was far from a conclusion. I barely had time for this to sink in before the next hurdle.
Better regroup fast.