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, 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.
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.
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.
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—noise, smell, light, talking. Sometimes it’s a sensory overload, which is a new symptom this year. What I may be able to do one day leaves me obliterated the next.
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.