Mixed Connective Tissue Disease and many chronic illnesses (especially autoimmune diseases) vary in intensity day by day. This makes it hard to plan week. Heck, with autoimmune diseases the intensity can vary hour by hour. I have chronic migraines. These can descend on me at any time; I know I have less than an hour to get to a dark place and lay down.
How is it possible to live a good life when your life is constantly interrupted? How do you live well? So many people tell you to pace yourself when you are ill. In some ways this helps you to get through the day. It helps to get tasks done. But If you do you will get through the day living a mediocre life never doing anything exciting. Sounds boring, doesn’t it? I’ve tried it and it is.
I never signed up for a boring life. I want to really live my life. I want to really drive these points home even though I’ve mentioned them before. So the question is what do you do? You take full advantage of each and every moment in which you feel good. These are the times I go outside (wearing appropriate gear to protect me from the sun) and enjoy the fresh air, or take a very short walk. So what if that day I only can make it from my drive way to the next one on our block. It still feels glorious. I may pay for my walk in the garden or outing with a friend for the next two days be stuck lying on the sofa; however, I will be living life instead of watching it pass me by.