Day 18:
Better? No. But I have become a deeper person. I spend more time contemplating the meaning of life and thinking about what matters. I live with extra intention and put emphasis on things I find to be valuable and meaningful. Similar to people with terminal illnesses, I am constantly aware of the importance each moment holds. I am aware of the limit of quality years that I may have. Most people seem to try to hide from and ignore the fact that eventually they will die. But living with an incurable, chronic, debilitating, invisible illness, there is no way to hide from the truth about life and death.
Having this knowledge does not make me better or worse than anyone. It just makes life different for me than it is for most people I know.
Day 19:
Scared. Pessimistic (or realistic?). Terrified. Doomed. Hopeful. So many feels. Contradictory feels. Mostly, I try not to picture or plan for a future, because I might not get much of one.
Day 20:
I recently started talking to some women in an online support group for CFIDS, via email. It's nice conversing with someone who deeply gets it and has been through it all too.
I've also met other CFIDS patients when I've done events as a "patient spokesperson" of the illness. It's awfully validating sitting on a panel with other sufferers. In day to day life, you just don't see other people with it so you tend to get overly excited about fellow patients.
I chat with people via the Instagram community about life with TOS. That's cool to see how much power using a hashtag has, when it brings together all these patients of this rare disease.
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