…at that point you are asking me to make a decision between my conditions, between my health and my ability to cope as I navigate the world. I have to decide whether I try to cope with a mask that makes me feel like I can’t breathe, like I am overheating, distracting me from anything else, or whether I risk getting the virus instead. For me, at the present moment, that decision does not seem worth it.
I spent seven years being sent from department to department, every doctor or therapist telling me they couldn’t do anything, or couldn’t do anymore. Several neurologists, orthopaedic surgeons, a rheumatologist who said EDS didn’t exist and young people didn’t get fibromyalgia. Physiotherapists and occupational therapists, some good, some who only saw me once because they didn’t understand me. A set of nerve tests, plenty of ECGs, lots of blood tests. I started using a mobility aid because my legs couldn’t hold me up.
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