Something that dealing with myasthenia gravis (MG) is teaching me is how to say no to people. In my 40 years of life, I’ve always been the “yes girl.” No matter the situation I could always be counted on to step up and help whenever/wherever I’m needed at home, at work, and out in the community. These days, that’s not the case. I step up when I’m mentally and physically able to. I can’t say that I thought I’d be feeling/thinking like this at age 40. I expected this way of life to come on around age 80…if ever. No one in my family really retires. They work hard and play hard until their very last breath, unless they’re stuck in intensive care on life support until the end.
Saying no definitely comes with its challenges. The main challenge is guilt. I feel guilty at the drop of a hat. Why? I still feel I should be able to do EVERYTHING. Plus, with so many people commenting that I look great or I don’t look sick, it makes it even more challenging for me emotionally to say no. I try talking to myself (not out loud for the world to hear) that it’s really ok and that I have nothing to worry about. If a person I’ve recently denied a helping hand to suddenly thinks less of me because of it, it’s their problem and their loss because I have no time to deal with them and their spoiled, childish ways. I need to focus on me and the people who do understand and who now help me in my time of need (when I ask). I still help people when I can; it’s just not so very often anymore. And for the record, I’m not lazy, depressed, or just sitting at home feeling sorry for myself. I’m focusing on me and what I need (mostly quiet time) and making life adjustments for an easier-to-manage future.
Even though I’ve not enjoyed my job much lately (for many reasons I will not go into here), I feel guilty when I’m out because of my health. I know I shouldn’t. I should take care of me, but it’s hard to completely change a way of thinking overnight or even over a few months. I guess I’ll get over it some day.
In the meantime, I must continue punching MG in the face along with guilt and their sibling “yes.” You guys are causing me way too much grief!
Just Want to Punch 'em in the Face 
I am so bad at this. I love my job but it’s very demanding. I can’t even take a lunch break. I talk to people about MG and they roll their eyes. Do you find you get tired easily? Is this a symptom?
I definitely get weak and tired easily. Some days it’s worse than others and I even have difficulty sitting up straight in a chair! When it becomes really bad, I have to leave work and go home to lie down. I used to feel really guilty about it. I’m slowly moving away from such feelings. After all, I have to take care of me. They’re not going to do it for me and I’m not going to kill myself for them. 🙂
Also, I’ve given up on getting everyone to understand what I’m going through. Unless they suddenly find themselves in a myasthenic’s shoes, they will not get it. It’s kinda like guys having prostate issues. Well, I’m a girl without a prostate so I can’t relate to what they may be enduring. I can sympathize and try to learn or understand their situation and be supportive, but I’ll never truly be able to empathize.
I become tired and fatigued very easily as well. If I have a “good” day and take advantage of it, I pay for it with a week of double vision, labored breathing & weak limbs. So, I’m taking everything and everyday easy. And I LOVE the word NO!