I was hyperactive. I grew up a competitive gymnast and rose to two levels before Olympic entry. I swapped to martial arts for 16 years, followed by dance and circus after a back injury (this was me slowing down). When I got ME/CFS I was in an actual cancan troupe for fun, but my career is in art. I was generally the strongest, most flexible, most daring person in the room. I was used to pushing through huge amounts of pain and exhaustion on a regular basis.
I have had severe ME/CFS since 5/2017, but before that I had it mildly for a year and a half without knowing that I had anything specific. I thought I had a series of colds and weird episodes. I didn't know anything about ME/CFS, and didn't think I had an overall condition. Then I had a huge crash and overnight was categorized as among the most severe (though not as bad as it gets). I’ve since made a huge amount of progress.
Here’s how it went... I got a norovirus while performing at an event (cancan). I went from nauseated at 4AM to losing all my fluids by noon, when I showed up at the ER. It took four bags of saline to rehydrate me and they told me if I had waited longer to come in I probably would have died. The recovery was long. I had to rest crossing a room. I couldn't stand long. Two weeks later we had a trip to Disneyworld scheduled and in the airport a stranger offered me a wheelchair I looked so bad. I needed to rent a scooter for the trip, but I (foolishly) pushed to walk as soon as I could.
I had a year and a half of lesser symptoms: months in bed feeling sick, randomly not being able to handle sensory or emotional stuff, new bad headaches, sudden weakness, sudden sensitivity to light, noise, even a conversation. I had moments I felt like I needed to sit down or I might fall down. In between I went to my regular work outs and thought maybe I was just getting older. I certainly wasn't at full steam. I collapsed during two of my regular workouts and was fine for others. I was more tired and sore than usual after them though. I pushed through and tried to brush it all off. I thought the hypersensitivity was a new kind of anxiety (which I already had). Looking back I don't know how I explained the collapses to myself, but they scared me. I toughed it out because I was used to toughing things out.
Then at an event (Maker Fair) I felt strange and terrible. It was an overwhelmed feeling (sensory overload, emotional sensitivity). I also felt physically wrong in an unfamiliar way. I knew I was hydrated, fed and hadn't walked too far, so I was confused. I felt like I needed to lay down. By the time I got to the car I was shaking with effort to just walk, and I was crying uncontrollably with the overwhelmed feeling. I felt utterly helpless. An hour later in the car I could barely lift my arms. I had a coldsore. I didn't know it then, but this was my "second viral infection" that probably triggered my getting worse. That's what Dr. Chia said later. We'll never know.
When I got back home I was bed-bound. Just sitting upright for 15-30 min caused sweat to run down my back and made me shake with exertion. I was an artist who couldn't draw a circle. My right hand's handwriting looked worse than my left hand usually did. My hand felt like it was controlled by a broken remote and I was wearing heavy rubber gloves. I had days when I was unable to do more than crawl (with breaks) to the bathroom. I needed breaks brushing my teeth or hair or even chewing food. My brain didn't work. . Both my brain and my tongue failed at talking regularly. I took baths instead of showers because I couldn't even sit upright on the floor long enough for a shower. For the first three months I tried to do things on my best days where I could walk. I would sit on a stool, walk a few feet, sit, walk, etc. My doctor was testing me for everything, but she initially discarded CFS/ME because she had been taught it was a psychosomatic disease and she didn't think that could possibly be the case with me.
During this time she had me go into the ER at UCSF. She knew that if it was a certain neurologic condition, that time was important, but getting an appointment with a neurologist would take months. So she had me go in during the day when a good one would be on duty. I went in alone since I was toughing it out still and my husband was at work. I made it through the door before I collapsed and needed a wheelchair (I was stubborn and stupid in retrospect). When I finally saw the neurologist and he evaluated me he gave me the "graded exercise and cognitive behavioral therapy " line. Now I know that is the old (flawed) ME/CFS treatment, but he didn't even say ME/CFS. He suggested that my legs were collapsing because "maybe I felt neglected by my husband" (since he wasn't there). I hadn't asked my husband to come. I wanted to smack the neurologist, but he seems so sincere. He implied it would go away if I could get the therapy to convince myself I wasn't sick. I was outraged. I saw another neurologist by appointment. He was nicer, but also called it a "software problem" (psychological).
In the meantime I did my own research, self-diagnosed myself with CFS/ME and through the research convinced my doctor to try me on Valtrex. This helped me a HUGE amount (though it really varies person to person and can cause liver and kidney damage). I managed to do that within the first three months, and I was so thankful for my research and advocacy skills and my amazing doctor who stood by me. She referred me to Stanford and Dr. Chia and I waited my turn for appointments.
Soon after I had the best day I had in months and I tried to go outside... until I almost collapsed crossing the street (all of 30 ft). I had been doing the stool-walk-stool thing again but the distance across the street was too far. That’s when I admitted I needed the wheelchair. It has a recline and a foot-rest because I couldn't support my torso long and my feet being up helps circulation. That was a huge identity shift as a gymnast, dancer, martial artist, and circus performer. But it gave me freedom. I was able to go to Disneyland.
Meanwhile the valtrex gave me enough energy to move from room to room in the house with rests as a regular baseline, and to sit up for short periods (and leave the house in the wheelchair). I got a wheelchair van and suddenly I was able to get places again (though I can't drive for myself more than 15 min.). I did three major art shows with the help of friends and family. I traveled to the East Coast. I still stuttered and slurred and missed words when I got tired. My PEM crashes were horrific and meant being in sound and light free space and not even rolling over in bed while in lots of pain, feeling hot and cold.
I was able to see Dr. Chia in LA four months in. He validated my experience and self-diagnosis and suggested various supplements and careful pacing. He also had a special CFS supplement specifically for people who started their CFS with a gastrointestinal thing and who are experiencing gastrointestinal distress (check, check). I gradually built up to the correct dose and my gastrointestinal stuff went away. I got a little more energy.
Meanwhile my doctor had more supplements to try and was researching Stanford’s stuff to try to find more ways to help me. I made adjustments all over the house. A chair in every room. A rolling chair to cook in. I cook dinner in stages with breaks. It helps. I still had trouble sleeping and staying asleep. My awesome doctor gives me a prescription for Trazodone which helped me stay asleep and suggested melatonin to get to sleep. I was suddenly able to sleep. I improved a little more. She tried a drug Stanford is using which she is familiar with for other treatments (it’s to break addiction) but it made me feel sick so I stopped.
I struggled with pacing (as a highly athletic person used to pushing through pain), but I learned to pace. I got even better. I still lost abilities when over-stimulated- like not being able to read. When I messed up on pacing and have PEM I still had all-over pain, shooting nerve pains in my feet and hands, was unable to bear the sound of footsteps outside the door, with insane headaches (both cluster and migraine). I couldn't read or watch anything or sometimes even handle an audiobook. My brain couldn't take it. I lay in the dark. I often have to crawl to the bathroom. This usually lasts at least a week, with a less-good two weeks after. By now I was taking about 30 supplements a day. If I stop taking them I feel worse, so I kept taking them.
At my doctor’s suggestion I wear compression tights, which helps keep my blood in my torso/head. When I know I need to be more active for a longer period I actually wear a medical corset for that purpose (again on my doctor’s recommendation). It works. I am able to stay more alert and work less hard at being upright.
Eventually I got to Stanford (after a year and a half wait on their waitlist). They stressed pacing even more. The give me treatment options and I decided to go with Naltrexone first because I researched Abilify a little and got scared. It helps. I got a little better with Naltrexone. I researched Abilify more deeply and learn that the anti-psychotic dose is 50-80mg instead of the 1-2mg for ME/CFS. The side effects at that dose are virtually nonexistent. I try it and I GET MY BRAIN BACK. The mental fog, the not being able to (as an artist) draw a circle, the stumbling for words- GONE. I also get a little more energy.
I took a ADA trip to Morocco and it was amazing. I continued to do art shows, including one in Japan, possible because of my wheelchair and hired assistants. I got better and better at pacing. Traveling again feels amazing. I even started a wheelchair/ME/CFS travel and travel advice blog.
(3/6/2021) My "good day" baseline is up. On good days I can sit upright for as long as two hours. I have been able to paint with the same skill again, though I have to be careful and pace and rest. I am able to build my art installations with the help of friends, assistants and museum staff. My brain works better, though I still can't sit and read a book for more than a chapter, and I have to be careful with my brain in terms of audio an video content, conversations, stressors, etc. I can think as clearly as I did as long as I pace. I do reading and writing piecemeal, but at least I can do them. I can do more around the house, and walk back and forth across the house before resting. I have mini less dramatic crashes that don't feel like PEM most of the time but which tell me to stay in bed and be very, very careful for a couple days... and then something outside my control like an outside stress will put me right back in the dark unable to handle sound and light and crawling to the bathroom again. Usually for only a day or two though, and the rest of the two weeks I can do things from bed. On good days I can stand for a short rinse-off, or cook a meal without taking a break in the middle. Some days it feels like I've gotten nowhere, but overall I'm way better than I was at the beginning when I needed breaks chewing my food or couldn't draw a circle.
Nearly four years have passed since my collapse at Maker Fair. Things always go two steps forward, one step back, but the progress has mostly been forward. I feel like there is a chance I may actually eventually get better. I notice that the careful pacing is one of the biggest factors. If I don't pace and I crash it can set my progress back for months.
With covid I am careful beyond careful. Stanford and various other experts have said that any major viral illness (certainly covid) will make people with CFS/ME a whole category worse... or worse. I never want to go back to where I was three years ago.
*Little update (1/2021). I realized it has been a year since I last had a true crash (crawling/horrible sensory etc. for a week and several weeks after mostly in bed). I've gotten really good at pacing and resting and avoiding the crashes and my overall energy is improving. I'm able to do more (though it makes me restless and even more hungry to be normal). Still, improvement!
*Update 8/20/2023: I continue to improve! I had a crash on Nov 2022, but not since then (so almost two years crash free! I improved a huge amount with no medication changes in that time. I was set back by my Nov crash (bed bound for a month, slow return to previous baseline), but I returned to my baseline from before.
Then I started Pepcid (over the counter stomach soother/h2 blocker/anti-inflammatory). There has been some recent Long Covid research on it and Dr. Bonilla at Stanford had me try 20mg a day. I definitely got a boost from it! Now I think I'm at 30% physical, 50-70% cognitive! That puts me in Moderate territory!
If you have this less badly than me, please be careful. You don't want to go there. Most people who had it as bad as I did or worse are not able to be on social media to talk with you about it. I hope the progress I made is encouraging. I hope you are careful and pace so you get better rather than worse.