I was supposed to see a friend today, but woke up this morning feeling overly tired. This was not a good sign. I walked my dogs and got more tired. A worsening sign. So I did the only thing I know how to do to cope with the horrible fatigue. I went back to sleep. When I woke up at noon, I hadn’t recovered my energy. Then came the heat on my face as a rash started to spread cheek-to-cheek. Then came a headache and joint pain. And the time drew closer to when I would have to leave to see my friend and pain medication did more to make me tired than reduce pain, I knew I would have to cancel.
Cancelling visits is par for the course with my illnesses. I’m always having to cancel some activity because of ongoing symptoms. When we think of chronic disease, we typically think of chronic symptoms, but there is more than that. There are social impacts and for me that has been loss of a marriage, loss of friendships and for those I retain as friends, the one thing they’ve come to know well is my absence.
It’s been that way for almost 20 years now, since I first became sick. Relationships are hard work and one of the things you need to be able to do so they are successful is show up. And it’s something that these illnesses of Lupus, Ankylosing Spondylitis, Sjogrens, Antiphospholipid Syndrome, Epilepsy, etc., make it impossible to guarantee. There are more times than not that I simply can’t show up. Illnesses are lonely bedfellows.
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