I think it is safe to say that I truly, deeply and quite sincerely dislike MG. Don’t get me wrong – I guess it has some good points and for those I am grateful. It is not degenerative. It is not terminal with proper treatment. And in my case, I am able to have a somewhat normal life.
Myasthenia Gravis is a neurological disorder where my autoimmune system over-reacts and causes fatigue, slurred speech, weakened muscles (including breathing, swallowing, chewing), droopy eyelids and blurred vision. It impacts driving, reading, cooking, walking – every aspect of my life.
Today, I had plans of leaving the house. I was going to pick up some prescriptions (of which I have many every month), purchase some stabilizer (I find joy in sewing and “playing” with my embroidery machine) and a few necessities such as bread, bananas, and shampoo. I’d even thought I’d stop by the dollar store and pick up Valentine treats for the homeschool group. But, MG has other plans. I’m weak and wobbly. Vision – not safe to drive. So, I will ask my husband to get the bread and bananas on his way home. The other things will have to wait. I’ve had to learn to be a pre-planner, thus, the prescriptions are not an issue at the moment.
I miss being able to “go” all day and still be able to function. I miss cooking. I miss driving whenever I want. I don’t drive at night any more. I avoid rush hour traffic. I avoid busy stores. MG falls under the MS and MD umbrella and a representative of the MDA told me that if I had to pick a disease, well, MG was the best one. I know she was right, but it doesn’t help.
More than anything, I hate what this disease does to my family. My daughter is 14 and my sons are almost 13. (Yes, twins.) They have had to learn that Mom is a wild card. I can think that we’re going out and then we don’t. Or we go out and I have to take a rest as soon as we get home.
We have had to change plans and sometimes cancel plans because of MG. Nearly every day, I have to take a rest in the afternoons. Well, the Homeschool 4-H group changed their meeting time to 3:00 on Friday afternoons. I simply cannot start an activity at that time. Combined with then heading home at 5?
Nick Making Pine Cone Bird Feeder at 4-H
Nope, not gonna happen. But they never complained. I know at least one was very disappointed and the other two mildly irked. But not one word. When we talked about it, they verbalized their understanding and did everything they could to reassure ME that it was ok. Some days, Shelby and I are out and she wants to look around at a book store, and I just can’t. We can do A and B, but anything extra is just out of the question. And she just takes it in stride. She’ll say “Maybe next time” with a smile.
Some days, their sweet compliance and agreeable attitudes just make me want to cry. Prozac helps. I hate taking it; I feel weak and dependent, but I’m working through that it’s as necessary as the Mestinon and CellCept.
My husband works full-time. He helps around the house. He helps with the kids. He’ll come home and ask what I want to do, always willing to take me shopping. He works so hard to make me happy, and to take care of me. And he succeeds. I am so very unworthy. BUT, what an example to show the children! Every day he shows them by his actions what it takes to make a marriage work, how to honor the marriage vows.
That’s probably what makes MG bearable.