Further Updates: Things Still Suck (but that’s okay)

Heya! It’s been a little while— two and a half years, more like— since my last update. A lot has happened since then! I thought it was about time I updated you all on my status and how my health has been progressing. My last post was very emotional (understandably!), so I’ll try to be a little more matter-of-fact and a little less doom-and-gloom this time around.

So, yeah… I have Myalgic Encephalomyelitis, or ME, formerly known as Chronic Fatigue Syndrome (CFS); it’s often shortened to ME/CFS for clarity. People tend to refute the name CFS these days, since it hearkens back to a time when ME was seen as a mostly psychological issue, and emphasized the fatigue over everything else, as if the fatigue was the only problem. ME is, and always has been, a debilitating disease that affects millions of people worldwide. Nobody knows for sure what exactly causes it, though the majority of cases seem to be triggered by viral infections, so it’s often referred to as a “post-viral illness”. A lot of people can trace their ME symptoms back to an initial viral infection, but many can’t pin-point it that exactly. I think mine may have been triggered by a really bad flu I got in 2008, which was probably what was called “Swine Flu” at the time, but it’s difficult to be sure. My symptoms have come on so gradually and over so many years, it’s hard to pinpoint when it exactly started. (I haven’t technically been given a formal diagnosis— I’ve technically diagnosed myself— but I haven’t yet had a medical professional refute it.)

Anyway, you can read my previous post for a history of my health problems and how they started. For now, though… how am I doing compared to the last update?

In my last update, I wrote this:

It started with me just sleeping in, or feeling tired, and me chalking it up to stress and poor scheduling on my part. It’s since progressed to me sleeping on average 9-11 hours every night, needing at minimum an hour lying in bed struggling to wake up before I can actually roll out of bed. I’m just… exhausted, all the time. The constant heaviness behind my eyes never goes away. I go for hour-long walks every afternoon with my SO to walk our dog, and despite the exercise, bright sunlight, and cool air, and I’m still constantly yawning the whole time and tripping over my feet. After large meals I get these overwhelming urges to nap, which I often can’t resist. I get maybe 4-5 hours of actually useful productive time in a day; but that “productive time” is still hampered by the fatigue, making it difficult to do more than the most basic of chores and smallest of creative projects before I run out of mental energy. When I do finally go to bed, I end up lying awake for two hours or more, exhausted, but still not quite able to fall asleep.

That was in September, 2021. Since then, a lot has happened. Some things that seemed to affect my health in permanent ways were:

  1. Late Nov. 2021: A member of my family suffered an emergency and I had to do a lot of mental and emotional work to help them through it. It took many months for things to become mostly resolved, and my health suffered throughout it.
  2. Jan. 2022-Jun. 2022: I got a part-time job working from home, but was forced to quit after 6 months because I couldn’t handle the workload— it wore me out too much, despite only being 5 hours a day, 2 days a week.
  3. Oct. 2022: Despite all our precautions, I caught COVID-19. (It sucked, do not recommend.)
  4. Nov. 2022: Went to the Eastside Culture Crawl here in Vancouver, walked around a number of artists studios with a couple of friends. I crashed badly afterwards (possibly because I still hadn’t fully recovered from my COVID infection).
  5. Dec. 2022: We tried to travel to the states for the holidays, but cancellations made that not happen. I had a really bad time at the airport and took a long while to recover.
  6. Jan. 2023: I took a trip to Italy to receive treatment from a friend of the family who’s a doctor. Though the trip itself was fine, the travel was incredibly taxing (and the treatment was not effective).
  7. Mar. 2023: Went wheel-throwing for a couple hours at a pottery studio. I crashed hard afterwards.

Basically, I can look back at these moments and see how my health and overall ability steadily declined afterwards. As with most things this isn’t a linear progression. I have up days and down days where I feel better and feel worse, but overall, I am in a worse way now than I was back in 2021.

I now need ~12 hours of sleep each night to function. Even with all of that I wake up utterly exhausted. I’ll sometimes try and explain what it’s like to healthy folks by saying it’s kind of like being hungover— I often have headaches, my head is fuzzy and it feels like my whole body is filled with molasses. I struggle to wake up. All I want to do when I open my eyes each morning is go back to sleep, but sleeping doesn’t make me feel any less sleepy. Sleep doesn’t refresh me. Imagine, every single night, going to sleep absolutely exhausted, and waking up each morning just as tired and groggy as you were when you went to bed, no matter how long you sleep for. That’s my reality. (Did you know that sleep deprivation has often been used as a form of torture? Gosh, I believe it.)

Falling asleep isn’t easy, either. I can be utterly exhausted, mind and body, and still end up lying awake for hours in the dark waiting for sleep to take hold. I can’t maintain a regular or healthy sleep schedule because my body just doesn’t comply. I’ve gone from sleeping until noon to sleeping until 2-4 in the afternoon with the same bed time as usual. Multiple attempts to fix my sleep schedule hasn’t changed this.

I no longer walk our dog. It takes too much out of me to do so. If I walk our dog during the day, I have to sacrifice being able to do much else that same day.

My number of “productive hours” in a day have fallen from 4-5 to maybe 2-3, if it’s a good day.

Showering has become really complicated. I have heart-rate/orthostatic intolerance issues, which makes it difficult to have my hands/arms lifted above the level of my heart for too long; washing my own hair wears me out, even with a shower chair to sit down in.  If I have a shower, I likewise cannot do much else that same day, and might need a day or two to recover afterwards (we have a walk in shower and no bathtub; I imagine baths would be easier for me).

Standing up long enough to cook a meal or wash dishes is a strain. I’m constantly monitoring my heart rate, and sometimes just getting up to water my houseplants will see it spike from ~80 bpm to ~140 bpm.

Instead of yawning the whole time I’m out walking, some days I just constantly yawn all the dang time (which is itself exhausting). My eyes are always super watery and tired. I have to fight to get complex thoughts out of my head sometimes.

I often have headaches that aren’t relieved by painkillers. They feel like dehydration headaches, but they persist no matter how hydrated I am. I had my first migraine this year, too, and it likely won’t be my last. I always feel vaguely sick, like I’m coming down with the flu, and that’s normal and won’t go away.

Suffice to say, I am disabled, I cannot work, and I can’t do many of the things I used to. Or if I do, I risk crashing, and needing days to recover.

I’ve mostly given up on getting help from my family doctor/GP on this. I’ve tried for years, and all he does is try to address specific symptoms in mostly wrong/terrible ways. For example, when I complained of low energy/fatigue, he prescribed me ADHD medication/stimulants, despite not having ADHD. This mostly resulted in unsafe heart racing problems and palpitations with no change in my fatigue. Otherwise, he’s been no help, and trying to get the tests and treatments I might need has been like pulling teeth. I describe some of that in my previous post. Needless to say, all attempts up until now to find a specialist who might be able to help me have failed. I’m on my own.

Unfortunately, there’s no cure for ME, and no universally agreed-upon treatments. The only advice is not to extend beyond your energy budget— to pace yourself and rest and not overdo it. Overdoing it risks triggering “Post-Exertional Malaise”, or PEM, which is an extended period of time where your symptoms are exaggerated to debilitating levels. PEM can be triggered by any kind of overexertion: physical, mental, emotional, or social (having a conversation with someone can sometimes wear me out just as much as a long walk). PEM can strike at any time, and up to an hour or even days after the exertion itself, so it’s often difficult to pin-point what caused it. PEM is often also called “crashing”, because of the way your body tends to painfully shut down for days at a time. The general advice is not to let my heart rate go above 100 bpm for too long, or I risk triggering PEM.

For the past year or so I’ve been doggedly doing my best to pace myself and not overexert. I stay at home 90% of the time. I don’t see friends often. I don’t walk the dog. My S.O. takes care of meals and shopping. I’ve given up on gardening because it’s too much work. I try my best to eat well, to keep track of my heart rate, to sleep and rest as much as I can, to take my medication and vitamins regularly and on time. I make my world smaller and smaller hoping it’ll allow my body the chance to heal and come back from this steady decline I’ve experienced most of my adult life.

Unfortunately, no matter what I do, no matter how well I pace, how well I monitor my vitals, how regularly I take my meds, how well I eat, etc. etc. I never seem to get “better”. I still seem to be worsening, albeit slower than I otherwise might. I still hold out hope that I might someday have remission, or some treatment will come out that will help, but I mourn the life I might have had, and realize that this might just be It. All I can do is try to slow it as much as I can.

It’s maddening to have an illness that is so vague, yet so debilitating. You try to describe it to people and they say things like “Ugh, I know what you mean, I’m tired all the time too” without realizing just what it means to have chronic unrefreshing sleep. They assume the reason why you feel ill is because you don’t eat well, or you don’t exercise enough, or you sleep too much, or not enough, without understanding just much you’ve fought and tried all these things in dozens of different permutations. They don’t understand how tragic it is to just feel your life slowly slip away from you without something to point to and blame for it, and then to be gaslit by medical professionals who try to make you believe it’s just depression or otherwise “all in your head”.

Agh, I’m getting emotional again, aren’t I? It’s hard not to. This disease is so insidious.

Anyway, if you’re wondering, Long COVID has been shown to be almost indistinguishable from ME/CFS in the majority of cases. Studies show that ~10% of infections of COVID-19 end up giving the patients Long COVID of some form or another. Trust me: you do not want this disease. It kills people, even otherwise young, healthy people. It permanently debilitates, and destroys lives. We’re living in a moment of mass disability where thousands are becoming disabled every day and most of the world is turning a blind eye and claiming it’s No Big Deal.

Please, if you get anything out of this: protect yourself, and others. Wear a mask when indoors and around others. Wear a mask in airports. In shops. In medical facilities. In school. At work. Get vaccinated however you can. Convince others to do the same, and try to encourage your employers/school administration to get air purifiers and filters. Normalize them as just another part of the workplace/utility. Test yourself for illness early, and often. If you do get sick, please isolate, and do what you can to rest and pace yourself as you recover, even when you eventually test negative. Give your body a few weeks to recover, if you can. Lobby your employers and government to provide more sick days and benefits so folks can take the time they need to get better and not risk permanent post-viral illness. Ask people to fund research and studies into post-viral illnesses so we can find real treatments (and possibly a cure) some day.

If you want to learn more about ME and maybe find ways you can help, visit the MEAction Network.

I still count my blessings! I’m not bed-bound. I can walk. I don’t have chronic pain. I don’t have bad light or sound sensitivity. I can still watch movies, use the internet, embroider, knit, chat with friends, eat my usual food. I can still play video games, even if I’m often too brain foggy for very difficult/complicated games. I have family, friends, and a partner that love and support me. I’m safe financially. I can still enjoy the birds at my bird feeders and read books and sit outside in the sun and all kinds of good things.

I still draw occasionally, and write, sometimes! When I have the energy. 🙂 I’m not gone! Just diminished a little… but I’m still here, and I’m still making things. That’s pretty great, and I try so hard not to take it for granted. <3

Here, have an embroidery I finished a little while back:

A finished embroidery of a group of wildflowers on a white fabric background. The flowers are gold, purple, and pink, with long pointed leaves.

Plus some juicy close-ups:

A close of up of the stitches making up one of the gold flowers. Lots of french knots.

A close up of some of the long pointed leaves in various shades of green. Stitched in fish bone stitch.

If you want to try stitching it yourself, here’s the design I drew up in Clip Studio Paint:

The original digital drawing of the design, black line art on a white background. Perfect for printing out and tracing to try stitching it yourself.

Feel free to save it, alter it, print it out, and use it however you like! <3 Take care, all.

— Heather

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