Month: May 2020

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# 3 What’s the Plan for Today?

This morning, my husband asked me my plan for today.

My reply: I have no idea.

It’s been a long time since I made plans for a day. Instead, I have hopes. Today, I hoped to do some grocery shopping and cooking, tidy up the kitchen, and plant the impatiens I bought yesterday. I truly thought it was a realistic list.

I was out of bed just before ten, had a cup of tea, blended my breakfast protein smoothie, and talked for a while on the phone with my sister and my mom. After I hung up, I thought a brief lie-down would be a good idea. Pacing is so important when you have fatigue. If you take the breaks you need, you can last longer.

I laid down at 11:30 a.m. thinking I’d need just twenty minutes of rest, but I fell asleep. When I woke, I was the opposite of refreshed and ready to go. Fatigue lay on top of me like fathoms of water. I turned just my head to look at the clock and felt the slump of disappointment that is so familiar these days. It was four o’clock in the afternoon.

I thought about the grocery store and the cooking and the kitchen and the impatiens. I kept thinking about them while I laid in bed, under the weight of an ocean, until about five o’clock when thirst and hunger pushed me down the stairs. I thought about them again when I’d had something to drink and eat. I could still get to the store. I could still plant flowers. Plenty of daylight left. But my arms and legs were weak strangers to me. They carried me up the stairs back to my bed, and that’s where I have remained.

Discouragement is the constant companion to chronic fatigue. It can pull you under and anchor you to depths you hadn’t known existed.

As much as I can, on days like today, I surface toward encouragements. In Pema Chodron’s When Things Fall Apart: Heart Advice for Difficult Times (Shambala, 1997), she writes, “We don’t know anything. We call something bad; we call it good. But really we just don’t know” (9).

I want to label the disassembling of today’s hope list bad. Negative. Disappointing. HopeLESS. Seems to me that it is all of those things. But Chodron may be right. I possibly don’t know anything. I possibly don’t know that there is some purpose to illness, some undiscovered sea creature of energy in the drowning of fatigue. So I don’t plan. I hope.

Hoping seems more in keeping with not knowing than planning does. So tomorrow, I’ll have a new hope list.

Julie

Photo by Julie Blake Edison on Unsplash

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#2 What Is Mast Cell Activation Syndrome?

If people were trees, I’d guess that one sapling in every forest has heard of mast cell activation syndrome. That’s most likely because fewer than one sapling in every forest has been diagnosed with the illness. But, according to the handful of medical researchers working on understanding the condition, there might be a pretty hefty stand of trees surrounding that one sapling that all have a mast cell disorder; they just don’t know it.  MCAS manifests as such a strange variety of symptoms that it is usually misdiagnosed as two or three or even ten other concurrent illnesses. The limited number of patients who have been diagnosed might be the tip of a very unpleasant iceberg.

I was diagnosed first with chronic fatigue syndrome and then with MCAS. That makes sense, because it now appears that MCAS may be chronic fatigue’s daddy.* In fact, MCAS may have an entire brood of distressing progeny: fibromyalgia, multiple chemical sensitivities, POTS, irritable bowel syndrome, and much more. The common thread here is that all these conditions are of unknown origin and were first dismissed by medical science as hooey. It’s possible—and I stress possible, because a LOT more research is needed—that MCAS is the root (or a root) of all these branches. If science can figure out what causes MCAS and how to cure it, we may be on our way to curing a whole tree of suffering.

So, what is mast cell activation syndrome? Here’s the Sesame Street explanation (keeping in mind that I am myself a student of MCAS, not an expert):

Mast cells were our bodies’ first defense against cellular invaders. Apparently, for a time, they were our only defense. They were the army before we had the air force, navy, and marines. As such, they had to do all the work of defending our bodies. Eventually, our bodies developed a more sophisticated defense, or immune, system, with lots of players doing the work the mast cells had once done on their own. But the mast cells haven’t been put out to pasture—oh no. They’re still around and playing an important part in our bodies’ defense system. Unfortunately, in some people, the mast cells are working way too hard. Maybe they didn’t get the message that they’ve got plenty of help now? They are not standing down at all, ever, and are firing on the very things they are meant to protect. They are overly activated, hence the name mast cell activation syndrome.

Mast cells originate in the bone marrow and then spread throughout every type of tissue in the body. They’re not numerous, but they do tend to concentrate where the body interacts with its environment—the skin, the digestive system, and the respiratory system. So symptoms of mast cell activation can include itching, flushing, rashes, hives, wheezing, sneezing, difficulty breathing, anxiety, panic attacks, low blood pressure, rapid or racing heart rate, gastrointestinal distresses of all types, sleep disturbances, and . . . yep . . . debilitating fatigue.

There’s so much to explain about MCAS. As I learn more, I’ll try to pass it along.

Julie

My primary sources for this post are both from Lawrence B. Afrin, M.D. One of his presentations is available on YouTube as Mast Cell 101, and his book, Never Bet Against Occam: Mast Cell Disease and the Modern Epidemics of Chronic Illness and Medical Complexity (Sisters Media, 2016) is widely available.

*When I originally wrote this post, I was under the impression that ME/CFS is caused by Mast Cell Activation Syndrome (MCAS). I have since learned that MCAS may more likely be a comorbid condition with ME/CFS. Or not. At this point, nobody really knows.

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# 1 Introduction

No one expects to become ill. Well, okay, I know lots of us harbor anxieties that we will end up with the diseases and conditions that seem to run in our families. Both my grandmothers had breast cancer, so in the back of my mind, wiggling about like a little worm, is a subcutaneous worry that I might end up with breast cancer too. But I’m guessing that most of us, if we’ve enjoyed nominally good health in the past, go about our days thinking that we’ll have decent health tomorrow too.

 And then suddenly, perhaps because of an infection, or gradually, like the diminishing daylight in November, we find ourselves with a diagnosis. Even if a friend has warned us—Julie, if you keep going this way, you’re not going to see your kids through high school—we’re still shocked when a doctor tells us that we have a chronic illness that is difficult to diagnose and has no known cure. And then, six months later, we’re even more distraught when she tells us that, based on our blood work, that chronic condition is actually caused by another, underlying chronic condition with no known cure and about which little research is being done.* So we’ll just have to experiment with symptom relief for as long as it takes. Meanwhile, rest. Stop working (not that we’ve been able, for some time, to work at all). Accept help from others (but we are Midwestern! And German/Norwegian!).

And so, without any preparation, mental or physical, we find ourselves in the ranks of the chronically ill, and the world as we have known it, indeed our own bodies as we have known them, are whisked away into a past that suddenly seems more golden than it did when it was the present.

The disorders I’m dealing with are complicated and almost entirely unknown by the general public. Trying to explain them to family and friends is exhausting and discouraging. So, since writing, for me, requires less effort and brings greater satisfaction than talking, I’ve decided to share what I hope will be a healing journey here in this blog.

If you’ve happened upon this page, feel free to read future entries, or not read them. We live in a busy world; following a blog is a big ask, and it’s just not many people’s cup of tea. All I do ask is that if you respond in the Comments section, please be kind. Kindness is healing for all of us.

Good night, and joy be with you all.

Julie

*When I originally wrote this post, I was under the impression that ME/CFS is caused by Mast Cell Activation Syndrome (MCAS). I have since learned that MCAS is more likely a comorbid condition with ME/CFS.