My Myasthenia Gravis Story So Far

Years ago, my life was a whirlwind of activity. I worked full-time, managed our home and family, and maintained a vigorous exercise routine that included two-kilometer swims and walks of up to ten kilometers. My first warning sign was a new, unsettling breathlessness when walking on an incline. Gradually, it became harder to manage daily tasks without becoming overwhelmingly tired and losing strength.

I began visiting my GP regularly, desperate to find the cause of my symptoms, especially since I had always been so healthy. I underwent many tests, scans, and X-rays, but the reason for my debilitating symptoms remained a mystery. My GP referred me to a hospital physician, where I had even more tests and was seen by a Neurologist.

After being discharged, I continued as a private patient with the specialist. We performed further nerve and muscle tests, but it wasn't until a specialized Single Fibre EMG that I finally received the definite diagnosis: Myasthenia Gravis (MG). After years of searching, we finally had an answer.

Living with myasthenia gravis

My doctor immediately prescribed Mestinon to treat the symptoms. Along with my GP and specialist, I am now closely monitored. I’ve learned that emotional and physical stress profoundly exacerbate my symptoms.

While my condition is much improved, I must be completely mindful of how I manage my day. I find that focusing on small accomplishments makes it easier to manage the daily symptoms of breathlessness and muscle fatigue. Unfortunately, symptom flares still occur, leading to serious dips in my breathing, muscle weakness, and fatigue. I recently had an emergency trip to the hospital by ambulance due to very high blood pressure—a new health challenge that my GP is helping me navigate with medication.

Finding a new normal

My diagnosis has irrevocably changed my life, and I often struggle with feelings of low self-esteem. It's an emotional journey I have to manage every day. I've always been a strong, independent woman, and now I have to rely on my husband for assistance with many things. I still drive, but exhaustion or vision affected by fatigue means I'm a passenger far more often.

Despite it all, I continue to spend as much time as possible tending our five-acre garden, with my husband’s indispensable help. Our home is tidy, but sometimes I look at the cobwebs and smile, knowing that years ago they wouldn’t have stood a chance. Now, they can wait for another day.