I'm documenting from memory (using journal notes, appt dates, etc) from the beginning of this journey with ME/CFS. This entry is the continuation of the story I began with my last entry. Bear with me, actually COMPLETING each entry requires many attempts to continue with the draft copy saved here. What may amount to only a paragraph when posted, often has taken days to complete, sometimes writing 2 or 3 sentences is all I am able to manage at a sitting, so if you notice I'm AWOL in between, that's why. Chronic Illness controls every aspect of my life. It's very frustrating, but I'm determined to get it all down in black and white. I admit, one reason is due to the fact that I feel I'm losing more memory than I am comfortable talking about with anyone. I just don't want to forget the details. Some day, I imagine they'll make huge advances with these conditions. Maybe my recollection as to how it began will be helpful for treatment, even if it's not for me.
I think I got as far as mentioning I was in school at the time. That was the next thing to "give". After suffering for about a month, sleeping around the clock unless I stumbled to the bathroom or choked down some soup, I was mostly sedated. I use that term deliberately. I recall feeling that the sleep was that of a tranquilized animal. I recall the feeling of losing/regaining consciousness rather than falling asleep as one normally does. I was still battling the on/off of low grade fever readings, the numbers fluctuating every few hours, when I woke at all, I checked. I still had the chills and sweats, although my home temp was consistent, and my "fever" temp never went over 101 again. It bounced between 99 and 101, never seeming to drop and remain normal. This continues 11 years later.
Eventually I had to admit that although I didn't know what I was fighting, if I was unable to stay awake more than 2 hours each day, I was NOT going to pass any of my classes, and each day that went by put me further behind in my assignments, so I requested a temporary medical leave. It took another 3 weeks before I decided I needed to drop my classes altogether. I had gone from someone who thrived best with 5 or 6 hours of sleep every night to someone who couldn't seem to WAKE UP. When once I woke to cricket chirps, now an alarm in my ear, along with a teenager shaking me to accompany the shrieking of said alarm, I was simply unable to "hear' through my flu haze. I was scared shitless, and I couldn't even stay awake long enough to voice it.
I recall this was during the period of physical therapy for my left shoulder. This was the only time I left the house. I was so sick, but also afraid to miss the therapy, because I feared I would then never regain the full use of my arm, so I set an alarm for about 5 minutes before I would need to leave for the appts, then I got up, peed, brushed my teeth, and off I went, in pajamas, and with a blanket. If I was made to wait any length of time, I would doze upon sitting in the waiting area. I struggled through the (1/2 hour?) appt, cried on the way home, due to the fatigue and the ongoing body aches; then went back to the couch once home, and slept on. Rinse and repeat.
I became a professional patient. It was a LOT of bloodwork. There were tests run for Lyme, cancer markers, you name it. They tested. And ruled out. One thing after another was negated. I saw ONE especially memorable moment, when in the office of a neurologist. He had ZERO bedside manner. It was also VERY clear he thought I was a nut case. He listened to me ramble, then wondered aloud whether it could be a brain tumor. Off the cuff. This to a woman who survived a TBI at age 23, a leaking brain aneurysm, a 5 percent chance of recovery. A 23 year old newlywed, mommy to a 6 month old boy. I was so anxious when I left that office, I was torn between my fear of the unknown to the indignation I felt over his behavior, and dismissal of my concerns for my health. It was clear he did not believe I was being accurate with my symptoms. I was dismissed.
Thankfully, my primary doctor had known me since 1998, when I first began to see her, pregnant with my son. After a pre-term delivery, my lifelong trouble with back pain reared up, and persisted. I had back pain, then leg pain, then numbness and tingling, and eventually, a limp. Chiropractic care, medical care, physical therapy, and medication couldn't stop the train, and this led to a 2 level lumbar fusion in 2006. So my doctor was VERY familiar with all of my issues, and was aware how much I "listened" to my body, and she BELIEVED me when I described what was happening. Because of this, I was referred to the specialists who could get me a diagnosis. Without her, I might still be looking for that initial diagnosis.
When a rheumatologist diagnosed me, I went home and cried and cried and cried. She had given me an answer, but in the same breath, expressed the words I couldn't accept. There was not only no CURE, there was also no real treatment plan. All I could think on the way home was, I'm Fucked.