I know people truly mean well… but it is always a trigger-point for me when I see someone for a few brief minutes and they say how great I look, or how I seem to be doing a lot better. The ironic thing is, even though I may actually be looking healthier and seeming to function better now than I was 6 months prior, or last year, it is only because I have had to finally accept the loss of more things I loved in my life to accommodate and prioritize my health.
This year alone I have had to give up on my weekly bible-study which I held so dear to my heart, I’ve had to give up on my gardening efforts, I’ve given up on all LIVE videos I used to enjoy doing for my small business work, I’ve given up walking around the yard with my cat like I used to, I’ve had to give up on nearly all social activities outside of my house, and I have to limit phone calls with friends and family now to only about 30 minutes to reserve my limited breathing muscle strength.
So yes, I may seem like I am okay when you see me, even better than before perhaps, what you don’t see is the gut-wrenchingly slow painful secondary losses my illness continues to cause me in my life as I am forced to choose between things I want for in my life, things which bring me joy and happiness, and preserving energy for basic life tasks.
It is an insanely hard place to live, and I am sorry that myself or anyone else ever has to make such hard decisions just to try to stay alive and as stable and healthy as possible and reduce suffering. I pray for strength for us all facing these challenges.
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