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.
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