In the few short days between returning from holiday and seeing Dr D again, the apparent new symptom worsened a little. I also started to notice my left jaw getting tired when I chewed food. It got progressively harder to eat meals, the later in the day the more difficult it became.
I told Dr D about it at my next appointment, as well as the more worrying development of getting increasingly breathless. This happened whenever I walked anywhere. This wasn’t when I exerted myself. I got out of breath simply walking across a room. I gasped for air trying to climb stairs.
I found this terrifying. I remembered vividly how it felt when my lung collapsed. The panic when I literally couldn’t draw breath. This was slightly different. There was no pain. When I woke up that morning with a pneumothorax, it felt as though there was a large weight pressing heavily on my ribcage. The feeling of trying to inhale and being unable to get enough oxygen was similar.
I gave up walking everywhere and bought an ‘all you can eat’ bus pass.
Just over a year and a half ago I started cycling to improve the diminished lung capacity I was left with after my pneumothorax. Even six months afterwards I still got out of breath walking upstairs or hills. I had significant residual pain in my chest from nerve damage and scar tissue left from the two chest tube insertions. Not wanting to rely on pain relief indefinitely, I researched how to combat these problems and decided to build physical stamina through cycling. At first I could just about complete a couple of miles. Determined to build resilience, I began cycling the four mile round trip to work and back every day. I remembered the first time I tried to cycle uphill; about 100 yards up I practically fell off my bike, desperately sucking air into my lungs. If anybody had seen me, they certainly would have thought I was having an asthma attack! But within a couple of months I completed my first 20 mile outing. No hill defeated me after that.
Now, I couldn’t even walk fast, never mind get on my mountain bike and race around at the 14 m.p.h. average I’d become proud to achieve.
Dr D however, is accustomed to seeing very ill patients. Not people who refuse to accept they cannot walk quickly. Each appointment with him, a consultant neurologist who travels from another hospital occasionally to see people with rare autoimmune, neuromuscular conditions, was 20 minutes. I hestitated to express my frustrations.
He told me it was time to start the next phase of medication. I was up to my ‘optimum dose’ of mestinon. He warned me last time that this magical drug would help combat the effects of the disease but wouldn’t stop it progressing.
The next stage was steroids. I’d read up a bit. Corticosteroids were serious drugs. They could have significant and dangerously negative side effects. But with the risks that I might be unable to swallow or breath, I really had no choice. Dr D said I must be mindful the primary risks of taking predinisolone were diabetes and osteoporosis.
The next day I collected my new prescriptions. Along with the steroids were tablets to counteract the side effects. Although the starting dose was low, I was to increase every few days until the desired dose was acheived.
I looked at my collection of pills. Altogether I has five different prescription medications, plus some supplements. I needed to take mestinon every four hours. Being obsessively organised and following the advice of Myaware, I started a diary to record my medication, side effects and symptoms on an intimate basis. I found some reassurance, an odd comfort in writing down every single dose of each medicine I had to take. I also needed to record my fluctuating symptoms and side effects of the various medications. I set up alarms to remind me to pop a mestinon tablet every four hours.
My new regime began.
The knowledge that I was actively working to suppress my immune system heightened my fear of germs. I had always been afraid of coming into contact with anyone showing signs of illness. I’d been in remarkably good health the last few years, excluding the lung collapse. I hadn’t caught a cold or any kind of virus for almost nine years. It struck me now that what I’d thought of as my superhuman immune system was making up for my good fortune by trying to kill me.
I bought a collection of antibacterial wipes and alcohol gel. Little bottles to carry in my bag. A big bottle to keep in the hall at home. No germs were going to get near me. But pre MG, I would have gone into a housecleaning frenzy. Now I didn’t have the energy. I had to get comfortable with living alongside dust and dirt. I was sure by normal, non-obsessive compulsive tendency standards, my house didn’t seem too dire. To me, it was yet another thing slipping out of my control. The need to let go of the anxiety generated by not being able to do things like vacuum, or style my hair, became more important. I turned to my new prop; meditation. As long as I meditated at least once daily, I remained surprisingly calm. I kept wondering when panic would hit.
I did find comfort at first, in the drugs regime; organising my daily pill boxes, writing down my doses each day, monitoring the side effects. But the novelty soon wore thin. The first time I was out, mid bus trip, when my evening alarm sounded to remind me to take mestinon, that I wasn’t able to take immediately, I forgot when I got home. Just over an hour later my vision started to blur, anddizziness made my head swirl. I wondered at first why I felt so ill again. Then I realised the mestinon had completely worn off. I started to feel resentful of ‘the regime’. I had to wake up at 7am every single day, regardless of whether or not I needed to be up, so I could begin my day with mestinon. The drug I depended on to stop my muscles weakening to the point where I couldn’t breathe. I had to take my final dose at 11pm every night. Even if I’d gone to bed early. Just so I could breathe whilst I was asleep.
I had a moment one morning, when I raged at the unfairness of it all.
It’s not fucking fair! My life is ruled by alarms, tablets, which of my symptoms will dictate what I can and can’t do today.
I wondered how someone less meticulously organised than I was would manage to maintain the systematic regimen required to make sure all pills where taken at the right dose and time.
As the days passed and I settled into the rhythm of pills, pills and more pills, I started to notice new symptoms. My arms began to feel weak. The fingers of my right hand sometimes failed to respond when I tried to write, type, or do anything at all dexterous. My tongue stopped working occasionally in the evenings, especially after eating. It was apparent when I couldn’t enunciate clearly and my speech started to sound slurred. I wondered if these problens would pass as my steroid dose increased. I hoped they would.
It occured to me that it was impossible to accept my limits right now.
Because I hadn’t reached the limits of myasthenia yet