Dear Smile E.,
I’m exhausted and no one cares. Things have gotten rough over the last few years with my progression. When I’m sick and needing additional care from my team, my family doesn’t get it. So I’m home on IV antibiotics fighting pneumonia that would put a normal person down and in the hospital for weeks, I’m pumping my body full of chemicals, and my family expects me to continue with a normal person’s routine. However Thais same family would tel me to rest if I was admitted. However since I’m home and not admitted they expect nothing to change. Where is my rest and heal? Not getting admitted is great for me, but my family thinks nothing is wrong if I’m not admitted and I am expected to keep on keeping on. It’s not fair and I’m ready to throw in the towel. What should I do to get everyone to understand that I am sick?
Signed,
Throwing in the Towel
Dear Throwing in the Towel,
I totally get you! Believe it our not I’m in almost the same boat. This treating at home can be cruel. We don’t get the rest we need and people do not understand how sick we are. If I could reach through the inter-webs and give you a big old hug, I would. Don’t give up, because we in the PCD community have you! In the meantime have you joined our Facebook page Turtle Talk Café yet? On Friday’s we are discussing a book about boundaries and setting them for peace. I think that you would find the book very helpful as I have. If you’d like more information on Nedra’s book about boundaries please join us on Fridays in Turtle Talk Café or message me with a request for the book name. Please know that there are many PCDers in the community ready, will, and available to talk anytime day or night. You are not alone, please reach out and don’t throw that towel just yet.
PS. I’d you like I can help you find some counseling. Please don’t suffer in silence. We are here to help you.
Yours Truly,
Smile E. Turtle
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