In May, I crashed. To describe it: crushing fatigue, POTS, many debilitating symptoms. You can’t function.
In July, I collapsed one night at the bathroom sink. I lay on the floor wondering if I was passing out. Everything slowed, I sweated. After a few minutes, I crawled to bed alerting my husband. I dared not even raise my head through the night.
In early August I ordered a potty chair for downstairs. In later August I gave up going downstairs to the couch during the day.
I did not come down again til shortly before Thanksgiving. That was three months in my bed.
Sometimes I tried relocating to a mattress in another room across the hall for a bit. Sometimes that made me ill because of too much sun there.
I was trying virtual therapy to help me be mentally able to travel to my son’s wedding in a few months. During the sessions, I would sit up a little, semi upright on my wedge pillow. But before the session ended, I had to get flat. It made me worse to slightly raise myself. Not to mention, getting through that length of session interacting and talking was too much.
Long story short, I missed my son’s wedding.
I tried to start knitting because it was a craft I could do laying down. The next day my upper body hurt and I had crashing fatigue.
Keeping clean was worst of all. I could not stand up to shower. I could not lay in the tub. Either made me so ill. For awhile, I tried washing zones of myself at a time at the sink. For a time, I sat on the tub side and washed somewhat.
Finally, we devised a system. That other mattress on the floor across the hall was covered in a plastic case. I washed myself there with a series of plastic tubs.
But the hair! My inability to wash my hair was demoralizing. It really brought home to me that I was an invalid. I put it off as long as possible, then used our basin system, washing my hair lying down. I thought about shaving my head very seriously.
This was months of rolling crashes. Once, earlier than August, I cleaned up my bureau top. I crashed. Being upset made me crash. Temps over 73 made me crash. Moving too much made me crash.
Lying in bed all day, I was crashing.
I couldn’t tolerate people coming in to talk with me for very long. I couldn’t tolerate my beautiful sweet granddaughter running in the hall. Interaction was too much.
I would pray sincerely that I could go to the bathroom and get back and be OK. The bathroom is right next to my room. We moved the potty into my room!
I would pray to begin feeling alright when I was just lying there; that was a major GOAL. Because I could be lying in bed 24/7 and keeping quiet, and feel dreadful, so ill.
It seemed an impossible dream that I could reach a state where I could be up puttering around my house again. I prayed for that , after a long time praying for the next tiny thing.
So I can map the trajectory of that crash. I became ill in late May, after several triggers together.
I continued to DECLINE for two months, until I almost passed out in the bathroom. I further continued to decline until I think I bottomed out in late August. I gave up and stayed in bed. I struggled to just maintain while experiencing multiple rolling crashes.
I thought a lot about how it had been in earlier long term crashes. And I realized that there are different states. There’s the state of rolling crashes, in which EVERYTHING you do spends money you don’t have, so you make yourself sicker just being.
Then there is a state of stability. It may take months of dedicated rest, but you may reach a place where mere existing doesn’t cost you. You notice that:
1. lying there feels OK, and
2. you can exert yourself slightly…without crashing.
You can rest, then carefully DO. Then rest. Pace yourself.
So sometime in the fall, I reached stability. It was shaky, and not totally linear. I came downstairs about a week before Thanksgiving. It was weird and scary to be down there. But I was downstairs during the day again, though still living on the couch.
I managed to decorate for Christmas, slowly, in little bursts. I attended Christmas dinner, which I did not cook, in the adjoining room, but I had to lay down on the couch mid-meal. Christmas Eve had been almost normal for me, but I paid for it next day, resting between Christmas morning and coming down for our guests in the afternoon. My kids went to my sister’s house for Part 2 but we watched a movie at home, feet up.
I missed my daughter’s baby shower, though it was five minutes away by car. This was in late March.
My son’s wedding wasn’t until April. I could in no way travel there, nor tolerate the event.
My granddaughter’s second birthday party was the last thing I went to, the last place I went before crashing. The next place I went, the first thing I went to after my Crash, was the same granddaughter’s third birthday. Her birthday is early May.
So it was a year.
I still had a long slow road to functionality after that. I walk a tightrope every day.

