This, written over a few weeks’ time. Then today’s update.
I overdid it yesterday. I was a little too active, but more foolishly, I was mentally positive and energized about some projects I hope to work on in the future. This morning I am exhausted, especially mentally. Once again, everything seems overwhelming and unfocused.
I live on a rollercoaster. Not a fun one. I never know what the next day will bring–physically, mentally. I live on a razor’s edge. Too much exercise produces a “crash” but how much is “too much” changes constantly.
I have M.E., or Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis, or Chronic Fatigue Immune Dysfunction Disorder. Take your pick; most people don’t know what any of them mean anyway. “Most people” includes most doctors.
To list, I also have migraines, P.O.T.S./Orthostatic Intolerance, and Post-Exertional Malaise (PEM), to name just the biggies. I don’t sleep well, and even a long sleep produces no refreshing. I must maintain a strict low carb-no sugar diet to function, and I have digestive system issues which I have never really pursued. I cannot tolerate hot weather and sitting in the sun makes me feel ill, whether or not it’s hot. I also have a sometimes symptomatic MVP. Not a comprehensive list but it will do.
I am also struggling mightily with depression and anxiety. This should be its own topic.
Owing to both physical and mental challenges, I’ve had an ongoing dance with being housebound for the last 26 years. At one time I was bed-bound for almost a year.
How did I get here?
When I was 19, at the end of my freshman year of college, I picked up mononucleosis. I had a rather mild case and I felt back to normal after two to three weeks. Life went on normally for several years. I completed art school, and married my long-time fiancé. I had two children. After the second, I started to feel my stress levels somatically. I developed minor chest pain and got my diagnosis for mitral valve prolapse. Harmless, but disturbingly symptomatic.
While pregnant with my third baby, I was wiped out and had very low blood pressure throughout. During the next pregnancy I developed intermittent hip pain. Over the course of the pregnancy the joint became problematic.
I bore that son and carried on, albeit that walking was difficult. Graduslly my hip deteriorated until my foot was turned inward several inches off the ground and rotating it was painful. If I could lean on the carriage handle for balance, I was OK. But by the time the baby was a few months old, I had a diagnosis and a prognosis for the hip. It was idiopathic, meaning nobody knew why. But it was an autoimmune disorder: my body attacked my hip and destroyed it. I had total hip replacement surgey at the age of 33, when my fourth baby was 13 months old.
Too many triggers.
Hip surgery was in June 1993. In March of 1994 I was three months pregnant and not feeling too well. This wasn’t first trimester ill. It was something new. On March 20, I got myself dressed, got the kids dressed, got to church and started feeling deflated and woozy. I lay on the floor in the nursery until the kids were done Sunday School and my husband helped me to the car. I went home and stayed there for the next several months. After that day, I quickly progressed to a bedridden state. I emerged only to birth my daughter and returned to bed for three more months.
Written down this way, telescoped, I see that it looks like I worked hard on getting ill. I had five children in nine years. In addition, I was a highly stressed person by temperament. I have lived in a state of overehelmn-ness most of my life.
But I was always very healthy. I had normal stamina and rarely caught things. I still am rarely sick. I still think of myself as a basically healthy person, who has a few chronic maladjustments which give me symptoms, but do not pose any serious threat.
If you have a chronic condition, you constantly evaluate your present state and adjust accordingly. Food, activity, exercise, your to-do list— it’s all contingent and subject to change. You push forward most of the time but your condition calls the shots.
And sometimes you realize that you just have to lie down and let it roll over you. That’s where I am, right now. It will pass, but I have to be realistic and patient.
It’s been months though. I am convinced that I am unlikely to improve a lot while living under this black cloud of anxiety. You know the one I mean because you’re living there too. The relentless drumbeat: fear the virus. Fear the virus.
I lost the presumption of invincibility which young people normally have long ago because of my chronic symptoms. I feel vulnerable. So the news on the pandemic worked on me, even while I saw the manipulation and dishonesty about it. Shouldn’t have, but honestly, it did.
Update. I came down with shingles at the end of March. I spent the month of April on the couch. I spent the beginning of May slowly returning to my normal, which was staying in, pacing myself carefully, eating a super-nutritious diet, and living with moderate ME. Then came a couple days of feeling pretty well. I remember thinking: I’m definitely over the shingles, in fact I feel better than I did before the shingles!
Of course, I overdid it. If I tell you how little I did to overdo, you would be appaled.
I have now been back on the couch for a week. I have crashed, big time. I am looking more deeply into POTS. Orthostatic Intolerance. Dysautonomia. I do know that this is a huge component of my illness, but I haven’t done much about it. The way I feel this morning moves me to pursue this issue for some solutions.
If only for myself, I will now list the evidence for POTS. Right now: standing for more than a few minutes produces high heart rate, a sickly feeling, queasiness, weakness, dizziness. At times of best health: pre-syncope. A feeling I ignore of needing to lie down, inability to change position easily– I began sitting throughout the church service while others stood because I would have a feeling of vertigo or spatial disorientation. Since I was a kid, my feet would swell and turn red in hot weather. I have never tolerated heat or the sun well; for some years now they are intolerable. Summers in humid PA are long months to dread.
Most of my symptoms can be chalked up to POTS. But one is the marker only of ME. PEM.
The one thing characteristic of ME is PEM: post-exertional malaise. Everything is delayed. I may overdo today but I crash after 5 days, and for who knows how long. Payback is out of proportion to the effort expended. Everything is delayed. I may be eating like a bodybuilder monk and that will pay off, if I’m consistent, in 8 months.
It’s very difficult to perform so that you stay functional because it’s hard to know what caused or is causing a crash. How do I avoid the next one?
I have to live like someone prepping for a triathalon just to function poorly. Minus the exercise. Exercise is actually BAD for you if you have ME. Do too much and the payback is you in bed for extended periods.
I will now need to crawl toward my normal–and that’s other people’s version of getting over the flu. You could say I’m discouraged.