Disease Progression Sucks (ME/CFS)

This was originally posted on Reddit on July 9, 2017, so add five years to all of the date references. I’m copying it here for ease of reference for my application for disability benefits.

10 years ago, I was an exhausted mother of a toddler who had no idea why I had so much trouble sleeping and never felt rested when I did sleep for 8+ hours.

9 years ago, I’d figured out that what I had was CFS, but my primary doc’s office didn’t want to discuss it with me because there was no test and no treatment. But the psychiatrist I’d just started seeing had put me on a medication that FINALLY allowed me to experience restful sleep, and that was miraculous to me.

8 years ago, I’d gotten “laid off” from my last office job – I’d later found out it was disability discrimination, among other things – but I was still healthy enough to start my own business. Instead of getting paid $20 an hour to manage content for my employer’s clients, I was writing content 40+ hours a week for my own clients for several thousand dollars a month.

7 years ago, I’d gotten too much client work to write it all myself, so I hired a few of my friends and writers I’d worked with in my previous position. I was writing a lot myself, but also subcontracting other work out and editing it before delivering it to my clients. I was able to spend the entire day outdoors at the theme park with my family over the summer without too much PEM afterward.

6 years ago, there was no noticeable change from the previous year, but looking back, there was some gradual slide.

5 years ago, I went from mild CFS to moderate CFS literally overnight. One day, I attended a networking event for women in business. The next day, I was in pain (never a symptom before this time) and more fatigued than ever. I started walking with a cane to help with both the leg pain and the muscle weakness.

4 years ago, I only needed the cane to help me occasionally, but pain was now a constant companion. Now I smelled like menthol most of the time. I had many vials of blood drawn to try to figure out what was wrong with me. I’d started (and stopped) seeing a rheumatologist who determined after six months that he couldn’t help me. I wore compression gloves most days. My dermatologist perfomed a skin biopsy to figure out the deal with my chronic discoid rash, but no answers. (It looks like hives but doesn’t itch. I’ve gotten it literally every day since I was 10 years old; it gets worse as the day wears on, then fades when I sleep.)

3 years ago, I was in the middle of a full gastro workup as my dad was dying of cancer. I had literally every test the best GI specialist in the area could think of – you had to do everything before insurance would pay for the (also inconclusive) capsule endoscopy. Sudden, severe abdominal pain has been a sporadic problem since early 2014. I still have no answers, but I have been to the ER three times when the pain came on the weekend when my doc was closed and I was out of pain meds. Only opioids will do once the pain reaches a certain point, but I’ve since learned there are things I can do to ward it off if I can feel it coming on early enough. Grief following my dad’s death compounded my mental and physical problems.

2 years ago, I was partially housebound and bedbound by this point. Before this, I’d moved my “office” upstairs during the winter and worked from my bed with my laptop because my desk is against an exterior wall, and the cold was messing with my arthritis, neuropathy, and muscle weakness. Now I was staying upstairs during the summer because I didn’t have the energy to go up and down the stairs as much. (I really hate our downstairs bathroom because of plumbing issues we can’t afford to fix, so I’ll only use the one in our bedroom upstairs.) I could fix myself simple lunches though, and driving was still something I never worried about doing.

1 year ago, I accepted the once-in-a-lifetime opportunity to cover the Democratic National Convention as a correspondent for a political blog I contributed to. My focus was on disability rights and accessibility. (They talked a good game about being the “most accessible convention ever,” but the reality was very different.) I hadn’t counted on the fact that it would be 100 degrees outside with oppressive humidity, that public transportation wouldn’t be running anywhere near the place we were staying, and that I would have to walk several miles each day in the grueling heat. I destroyed my body. I’d had to spend one whole day in bed and leave a day early. I was bedridden for months, at my lowest point ever. Sitting up was difficult. I replaced my stick cane with a four-footed one that will stand on its own when I let go of it and provides more stability. I wondered how long it would take to recover to my pre-convention level of functioning.

Today. I never regained my pre-convention level of functioning. My cane isn’t enough when I’m out and about. I now use the motorized scooters at the grocery store. Sometimes I have to cancel daytime plans because I’m too tired to drive, and my husband’s new work schedule has him not getting home until nearly 9pm. I use cruise control whenever possible when I do have to drive. I had one scary day where I had to pick my son up from school, but muscle weakness made me worry that my foot wouldn’t stay on the brake at a red light. Thankfully, I escaped getting in any accidents. But it’s exhausting just to leave the house, even if my husband is driving, and even if all I’m doing is going out for pizza with The Family. (My mom, grandma, brothers and their families…) My husband occasionally has to cut up my food for me. I can’t shower all at once – I’ll wash my hair one day, wash my body the next day, maybe shave my legs the next day, sometimes take a day off, then repeat the cycle. I’m currently trying to get up the energy to soak in my Epsom salt bath. (I’ve been taking those for several years now, as they help with pain and weakness.) Short-term, I’m completely sapped of strength after the hot bath. But after I recover, I feel much better.

But yeah, I can barely leave the house. I missed out on 4th of July activities with my husband and son. (I wasn’t going to tell my 12-year-old he had to miss out on fun and fireworks just because I was too tired to get out of bed.) We missed our friends’ 10th anniversary vow renewal today because they decided to hold it in Niagara Falls, a 7-hour drive I couldn’t handle. I was coming to terms with having less capacity for activity, but I hate missing out on life.

Update from August 2, 2022. Please ignore referenced genders. My kid is a trans girl, and I am nonbinary. We just didn’t know it in 2017.

I am far more housebound and bedbound than I was five years ago. I’m in bed about 90% of the time, even after a whole year of physical therapy to recover some of the function I’d lost due to pandemic isolation, having only left my house a total of five times before I got my first dose of the Moderna vaccine in March 2021, and all of them for medical reasons. I’ve experienced a loss of cognitive function (though my neuropsychologist’s tests didn’t demonstrate this because I was already “above average,” and as he explained, his tools are blunt instruments that can’t help people like me until we have a baseline from which we can measure future cognitive loss) that makes it nearly impossible for me to work. My self-employment income from last year was negative, according to Schedule C on my 2021 tax return, as the project I got toward the end of the year (just as PUA was ended) didn’t exceed the ongoing expenses I needed to continue in order to make it possible for me to work.

I leave my bed only to use the bathroom – including ~2 hours soaking in an Epsom salt bath, which includes the preparation and the tedious process of getting out of the bath – and to go to the YMCA once a week to use their heated indoor pool to continue the aquatic therapy exercises I was doing in physical therapy until I ran out of sessions my insurance company would pay for. And I have other appointments occasionally, but my husband mostly drives me unless it’s one of my hyperlocal doctors no more than 10 minutes away. I almost exclusively need to be pushed in my wheelchair when I leave the house, and just sitting in my wheelchair is enough to cause PEM. When I drive myself somewhere and have to walk with my cane, the PEM lasts for at least 24 hours. Sometimes, my arms are too tired to even use my phone or laptop in bed. I can no longer go shopping even with a motorized scooter because I do not have the energy to control it.

Disease progression really does suck.