A disease called TTP began my descent into the world of SEID. In 1998, I was hospitalized for over two months with TTP. I would have 13 bags of plasma exchanged through my body daily in an effort to put the disease in remission. I came out of that with constant fatigue, swollen glands and sensitivity to stress, light and noise and a foggy brain that began interrupting my work. Although I had a mild case of SEID, I really didn’t know or understand what was happening. Every doctor I saw had nothing to say.<\/p>\n
In 2006, I came down with Valley Fever, and it wreaked havoc on my endocrine system, giving me my third auto-immune disease called Schmidts Syndrome. This gave me the more moderate case of SEID with episodes of severe. I lost my health, my career, my relationship and had to leave my home of 35 years to be near my family for support. I am disabled from SEID, CFIDS, ME. It doesn’t matter what you call it, it remains a debilitating and severely isolating disease. It is long past due that the whole medical community and government acknowledge this disease for what it is.<\/p>\n
Prior to these devastating diseases and the permanent SEID, I was a healthy, hard-working, vivacious individual. I loved life. Although I still love life and am grateful for what I have and what I can do on a good day, I still grieve the loss of life. I also grieve the lack of funding and the ignorance of the numerous doctors that have traumatized me with a lack of validation and care or a willingness to look into this disease.<\/p>\n
On a daily basis I struggle with debilitating fatigue and joint pain. I have to use what energy I have like a commodity. Some days I trade showers for doing my dishes or visiting family or friends. Some weeks are spent in bed recovering from PEM. Some days I can shop and hangout with my family but I always, always end up back in bed with PEM. The smallest of things can trigger\u2014noise, smell, light, talking. Sometimes it\u2019s a sensory overload, which is a new symptom this year. What I may be able to do one day leaves me obliterated the next.<\/p>\n
I work two days per week and the rest of the week is usually spent resting in preparation for another work day. It would be best if I quit work altogether, but I like being a part of society, and I miss it. I know it’s the worst thing I do, the push\/crash cycle. I cancel plans constantly in order to care for myself. I’ve learned to say no.<\/p>\n","protected":false},"excerpt":{"rendered":"
Humans of ME\/CFS A disease called TTP began my descent into the world of SEID. In 1998, I was hospitalized for over two months with TTP. I would have 13 bags of plasma exchanged through my body daily in an effort to put the disease in remission. I came out of that with constant fatigue, […]<\/p>\n","protected":false},"author":1,"featured_media":281,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2020\/07\/jill_m.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/286"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=286"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/286\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/281"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=286"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=286"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=286"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}