Humans of ME/CFS
The diagnosis was given to me about 25 years ago by an allergist/immunologist when I lived in Sacramento. I was very fortunate to already be seeing this doctor for allergies. He was somewhat of a local expert on immunology and had done a great deal of research on ME/CFS.
As he treated me over the next 18 years, we experimented with various medications to alleviate my symptoms and allow me to lead as normal a life as possible. I learned early on that it was extremely important to pace myself and rest when my body told me to. I continued to work until my retirement in 2009. It became more and more difficult to work and still have energy for any social activities. Toward the end of my career, it became difficult to find the energy to do my job properly.
As a type A personality, I’m a bit of a perfectionist. As a result, it caused me a great deal of stress which in turn worsened my ME/CFS symptoms. I struggled with chronic sinusitis for a number of years until I found an ENT that established a preventative medicine protocol. Following my retirement, I’ve concentrated on doing the things I need to do for my health, such as eating properly, exercising when possible and avoiding stress. Exercise and stress avoidance can sometimes be a real challenge.
Approximately ten months after my retirement, I met my husband at a high school class reunion. Although we graduated in the same class, we didn’t really know each other – it was a class of over 650. We began an email friendship and after a year began dating. At the time, he lived in Olympia, WA, and I lived in Portland, OR. Although I was reluctant to tell him about the ME/CFS, I knew it was necessary to do so and give him the opportunity to leave the relationship if he felt this was a challenge he chose not to undertake. To the contrary, he was fascinated by the subject and began doing research. He proposed a year later, and we were married in October, 2012. I had been single for 38 years before our marriage and doubted I’d marry again because of the illness. I feel so fortunate to have found such a kind and generous individual with whom to spend my life.
After leaving Sacramento in 2005, I’ve found it difficult to locate doctors in Portland and now in Olympia who believe the illness exists. Fortunately, I have found doctors that have agreed to continue prescribing the medications that I’ve found ease the symptoms. As many individuals with ME/CFS will tell you, that’s one of the most frustrating aspects of the disease – lack of understanding by the medical profession. There is also a lack of understanding by the general public. I often don’t tell people I have ME/CFS. Those close to me obviously know because it affects my day-to-day life and my ability to perform certain tasks and participate in certain activities.
I applaud your organization and truly hope there is a diagnosis and treatment protocol found one day soon.
Here’s hoping 2017 brings some exciting advancements in ME/CFS research.