So you are never really told if you will ever be 100% again or not because every person is different. They tell you things will change and the doctors do not want to sell you a false sense of hope. I am here to tell you you can have as close to normal a life as you had before except yes you will have lots more meds and trips to the doctor as a pin cushion, LOL. You will have to learn about energy conservation!!
Energy Conservation is hard when or if you are like me and used to going 24/7. I am so used to burning the candle at both ends. I was diagnosed while working 2 jobs (a full-time job and a part-time job), going to school full-time for my second masters, and planning my wedding. I was also training for several races. Learning to scale things back is not easy for me because this is me all the time. I am good at time management but horrible at rest!!!
MG forces you to rest! When you try to do too much your symptoms will flare up and cause you to eventually end up in the hospital. It’s like you are allotted a certain amount of energy per day and you have to spend it wisely. I have to learn not to overdo it and that sometimes I have to say no to things even when I really want to do it. So because I am an awesome organizer and planner I have learned to plan that much more and have to clean on certain days, cook on other days (freeze it sometimes), and rely on my husband to do more than chores. He has learned to do more in this last 18 months than ever before especially in the kitchen. We do quite a bit of cooking together to make things quicker and easier for me and it gives us more time together.
I have also found tools and tricks that help get things done quicker and easier so that I do not exert and much energy and time on things like my dragon speech microphone when I work on my computer. I cannot always type long because my hands get weak so I talk. But then my my slurs but I trained my dragon speech system to understand my voice in that state and I can talk and types it for me. That was a lifesaver in school when I was in the hospital, LOL.
The only real way to ‘get more energy’ for us is to get a nap or sleep but that can disrupt med times, sleep patterns, and work patterns if you still work a normal schedule or a 40 hr week like I do. It helps though if you really need it. I do it often on vacation so that I can maximize my fun and games! That’s definitely an exception. Another way to get extra energy is to have fun as much as possible. I like to paint, crotchet, and play computer games as well as have social gatherings (but social gatherings can make you pretty tired so be warned, LOL).
How much energy is stored in your bucket?