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This is an excellent subject. MG by itself is an insidious affliction. Add to it a chronic condition that requires pain management; it can become downright unbearable.
I was diagnosed just over four years ago. We estimate I was treated for symptoms not attributed to MG for an additional eight years. Taking the suspected onset to twelve years.
I also have a friend who recently moved from ocular to generalized. We try to meet up once a month for support.
This year, we both experienced a significant increase in fatigue. We thought it was because of the heat of summer, but now that we’re in damp, gloomy days of winter with no improvement in fatigue, we can’t explain it. Add to that the side effects of the medications, and trying to gain any sense of predictability to plan projects or events is nearly impossible. As I try to explain to others – it’s like trying to nail jello to a wall.
If you have someone local to you, we have found that having someone who can truly understand what you’re going through really helps. As does an attentive therapist. Our spouses are supportive, as are our doctors. But no one has a true sense of MG’s day-to-day life’s erratic, unpredictable energy.
It is stated that MG has no impact on life expectancy. I disagree. Although it may not impact the number of years you live, it has a tremendous impact when comparing life before MG to today. Participating in forums like this and keeping abreast of advances have provided me with hope. Keep positive when you can, and recognize the few moments of peace you find. Above all, don’t beat yourself up – MG doesn’t need your help.