The full circle, and then some …

I have had MG for decades. It went undiagnosed for 5 years, and those five years were at times very difficult. Not through pain, but through fear, confusion, and humiliation.
I didn’t know when I would fall next. My legs just seemed to collapse under me. I had problems driving, swallowing, seeing and at times breathing. I was abused by motorists for crossing the road too slowly. I was laughed at because I appeared and sounded drunk. Eventually I had zero social life as the symptoms were too embarrassing to deal with in public. However, the symptoms would come and go, making me believe I was going crazy (when they disappeared, they completely disappeared!). Various doctors said I had dry eyes, or I was too overweight (I am tall and was size 14!), or I didn’t eat enough, or I didn’t exercise enough. Throughout the 5 years, I did not miss a day of work, because I knew of that if I took even a day off, I would never return. This would prove to prophetic.
I eventually saw a neurologist who diagnosed Myasthenia Gravis. With diagnosis came huge relief … I was so happy (I had never heard of MG, but phew! it wasn’t MS and it wasn’t cancer, how bad could it be?). “I am NOT CRAZY!”, I excitedly declared to Mum. “I am sick! I am really sick! I have a disease! Isn’t it wonderful?!” She sat down, and cried with grief.
Diagnosis meant I could finally fight this thing. I was put on Mestinon, a drug specifically for managing MG, which worked immediately. And 6 months later, my thymus was removed – the old fashioned transsternal way.
I led a relatively normal life from diagnosis. Over the years, my health improved and I could go days without taking mestinon. I knew my limits, and they were not too bothersome in the scheme of things. I worked long hours in a job which at times was very stressful; I travelled extensively; and I even jumped out of a plane (although the Mestinon wore off during the jump, and when I could not lift my legs for landing, the jump master bellowed “you are going to kill uuuusssss!”. Obviously we didn’t die, we weren’t even injured, and the detour route (as we missed target due to his panic attack) was incredibly fun). One thing I did not do was drink alcohol … I found out early on that it adversely affected my condition.
When I fell pregnant, 11 years ago, I went into drug free remission. Yay!! For the first time in 20 years I could run! And nothing was out of bounds. I was MG free throughout pregnancy, child birth, periods of high stress in my personal life and work life, through illnesses such as pneumonia, bronchitis and shingles. I felt invincible, and it was fantastic!
Then on New Years Day last year, I received news that Mum was in hospital and it wasn’t looking good – she had 2 days or 2 months – the doctors didn’t know. Almost immediately, the double vision returned. Over the course of the next couple of months, MG spread to the rest of my voluntary muscles. I started on Mestinon again, but it had no effect on the double vision.
When Mum passed away in March, I felt something break within me.
I returned to work a week later, but found it increasingly difficult to carry out my duties. It became harder to walk, harder to hold things, harder to type, harder to keep my eyes open, harder to concentrate. My husband had to help me out of bed, help me get dressed, help me out of my chair. But I continued to go to work. I was always exhausted by midday, and found that Mestinon had little impact. My doctor insisted I take a month off work.
I did as I was told. However, the one month became 2 then 3 as my condition became worse. It would be 4 months before my doctors presented an action plan.
I was put on IVIG, prednisone, cellcept and mestinon.
On the day before I started IVIG, I found out that I no longer had a job. It was very upsetting as I had a mortgage, and a child in primary school. And I was sick! So in these circumstances, IVIG did nothing for me.
However, the doctors told me to hang in there for four months to allow the various aspects of the treatment to kick in. I felt so weak and stressed and sad, I couldn’t see my situation ever improving.
My doctor, concerned about my mental health, suggested I see a psychologist. My husband’s response was “stuff that! We are going to get in touch with nature, and weed the garden, then go swimming!”. So that’s what we did. We gardened a bit, and then we headed down to the beach for our daily swim (I had a life jacket on so that I would be ok if I got into difficulty). I have to hand it to him, emotionally I felt a lot better after our swim. It became my antidepressant.
Around the 4 month mark, as the doctors predicted, I started feeling stronger. Suddenly I could walk without holding onto my husband, I could swim without the life jacket, I could weed for more than a few minutes. But what was truly amazing, was that around a month after this, I swam 800m without a life jacket, and then immediately walked up two flights of stairs without needing to hold onto the handrail and without getting out of breath! After not moving much for the best part of 8 months, how is it that I could walk 2 flights of stairs without getting breathless? I have even since had a bit of a run up a ramp. I think the gardening helped strengthen my legs, and I really believe that the swimming helped strengthen my lungs, and my body in general.
I still have not so good days, and I do get tired during the day, BUT I am so much better than I ever anticipated 6 months ago.
We are blessed in this country to have access to good doctors and effective treatments. I know I am lucky to have eventually responded to treatment. I hope that one day I will go back into a drug free remission, but in the meantime I am thrilled that I can cut vegetables again, that I can weed for an hour, that I can swim without fear. I have not driven a car in a year, and I am not comfortable driving just yet as my eye lids are still a problem.
I hope that all sufferers of this disease find the right treatment to allow them to also live a near normal life.