Humans of ME/CFS
In 1993, while working as a child investigator in upstate New York, I was rear-ended in my car while sitting at a traffic light. My front seat snapped off. I hit my knees on the dashboard, suffered a concussion, and whiplash. I expected a week or so of recovery, but never fully recovered and since then have never held a full-time job. I have been on permanent partial disability ever since. It took me 6 years to get a diagnosis. I heard about a doctor in Maryland (well-known in this community) and sought him out, driving hundreds of miles to see him. I was so desperate for an explanation. I was diagnosed with CFS and fibromyalgia. Previously, I had never been sick, was extremely active, raised six children, and always worked full time.
Fatigue has been my worst enemy. It feels like I am coming awake through pea soup each morning and takes me two hours to get moving. My metabolism has changed and I gain and lose weight unexpectedly. All my joints ache and for many years, I had dreadful migraine headaches. Now, I just have a chronic everyday headache. I have serious gastrointestinal problems (IBS and GERD); I am on medication and have been hospitalized for both conditions over the years. I also have pre-existing allergies and sinus problems which have worsened since then.
My condition is truly systemic. I have worked many jobs over the years, but have been unable to do anything administratively full time and have lost many thousands of dollars since being diagnosed. I had just remarried when I received this diagnosis and along with me being ill all these years, my new spouse had prostate problems that developed into cancer. He had a triple bi-pass and a valve resection, diabetes, and progressing frontal lobe dementia from an auto accident that occurred 2 years before we married. There were numerous surgeries and illnesses during a 20-year period. I had been his caretaker for many years. My husband passed away 3 years ago. It seems, as I am advancing in age, my symptoms have worsened or I just cannot “manage” them as well as I once used to. I have had more hospitalizations. I am on more meds and more fatigued.
I have almost completed a ‘book’ about caring for my husband, explaining how important it is to have support from others. I had little to none. In the book, I do talk about my diagnosis and refer to its strain on my ability to “be a caregiver,” but it is not the focus of the story. I have somewhat downplayed it so as not to detract or distract the reader from the real story. Right now, I am reconsidering adding to it, as it is a good opportunity to bring CFS to the attention of those who might read it. The title will be “Spaghetti with Raisins” and it should be out in the spring of 2016. Thank you for this opportunity – it is healing!