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A note (possibly a final note) on this Dreamwidth

When I started this Dreamwidth, it seemed like a good idea for me to talk a bit more about my chronic illnesses and raise some awareness about them, because of the fact that they have such a drastic impact on my writing and because so little is known about most of them. I thought maybe if I talked about them it would be a good resource for other people with the same conditions, as well as people going through the diagnosis, misdiagnosis and rediagnosis process.

However, at the time I started this Dreamwidth, I was also going through a really dark period in terms of mental health. Anxiety runs in my family and while it's something I always knew and was aware of, I was oblivious to the extent to which it was dominating my life. The issues with Twitter that I blogged about the other day compounded this, leading to a spiral of about two-and-a-half years that had a very deleterious effect on not just my mental health, but my chronic illnesses as well.

As of now, I have been on anxiety medication for about eight months. When I started taking it, I didn't really notice a big difference other than it shut off the background noise in my head and got rid of the panic attacks. But I didn't notice how much anxiety had wired my brain until my brain had been rewired long enough that I could see the difference. When I go back and reread my old blog posts and social media posts, I am startled by how fear seems to dominate everything I say.

So, my point is: I started this Dreamwidth as an attempt to help others who might have similar chronic illness to me. But in practice, I was using it to vent a lot of my very dark innermost thoughts. Thoughts that I guess didn't seem that dark to me at the time, but now I look at them and am like, "Damn, girl."

I know there's probably a place for that as well, but I don't think I want to be the person to share that part of myself with strangers. Some people do, and I think that's great and more power to them. But I like to be pretty private online, and leaving those posts up goes counter to that. Additionally, now that I am not stuck in that dark place anymore, I honestly don't want to reread those posts, because it keeps those thoughts alive. There was a place for that vulnerability, and it's had its time, but that time is over. I don't want to live in the place anymore.

So I am going to make most of the posts on this account private now. I do want to leave some of them public, such as my posts about my actual diagnoses and my post from the other day about Twitter, because I think that's important and is a message that other authors need to hear. But if you click on a cross-link on one of the public posts and it tells you it's a dead link or a private link, that's why.

Thank you to my friends who commented on my old posts and were so nice and supportive. I really appreciate it.

At some point in the future I may revive this space for what I originally intended it to be. But for now, I will leave it at that!

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WTF Diagnoses: Fibromyalgia

As promised, here's the follow-up to my last WTF Diagnosis post, which was about ME/CFS. Today I'm going to tell you all about fibromyalgia!

Of all my WTF Diagnoses, this is probably the one you're the most likely to have heard of. Although it is still a rare condition, it has received increase awareness over the last several years. It's the most "common" of my health issues, affecting approximately one person out of every 50—although it's twice as likely to affect women as it is to affect men (Source).

The primary symptom of fibromyalgia is PAIN: chronic, widespread pain throughout your body, with particular emphasis in these areas:

• back of the head
• tops of shoulders
• upper chest
• hips
• knees
• outer elbows

Diagram of common fibromyalgia pain points

(Source)

Fibromyalgia can also cause migraines, something I am prone to. I tend to get neck pain with migraines (which I should note is typically triggered by migraines, not vice versa), which is also a symptom of fibromyalgia, so... since I only started getting migraines in my mid-twenties, not long before I started noticing the other symptoms of fibromyalgia, I'll buy that.

According to the CDC:

People with fibromyalgia may be more sensitive to pain than people without fibromyalgia. This is called abnormal pain perception processing.

My doctor explained to me that it's believed to be caused by overly sensitive nerves causing pain receptors to fire in circumstances where they ordinarily should not.

Diagnosis of fibromyalgia can be a difficult process because there's not a straightforward, standard test for the condition. Diagnosis can be made by testing for other conditions to rule them out, and by your doctor pressing typically tender areas to see if you experience a painful reaction. In my case, I was tested for arthritis as well as other conditions that cause chronic pain, and those conditions were ruled out. In terms of the "poke" test, let's just say... I had a very painful reaction to an unrelated test (one that is ordinarily painless for patients without fibromyalgia) that made my doctor say, "Oh yeah. You've got fibro, all right." Somewhat embarrassing, but it worked that I did receive a straightforward diagnosis because of it.

While there's no cure for fibromyalgia, there are treatments that can help mitigate the pain. One of these is graded exercise, which has not been an effective treatment for me due to also having ME/CFS, which can be aggravated by exercise (that whole post-exertional malaise thing). However, higher pain levels than normal recently have cut back on my ability to do even the mild exercise I had been able to (walking, swimming and yoga), and over-the-counter pain relief such as Tylenol and Advil had no effect. So my doctor recently prescribed gabapentin, which my doctor described as a nerve relaxant which will help block some of the pain receptors in my brain. I've heard good things about gabapentin from others with fibromyalgia and/or chronic pain, so I'm really hoping this will be an effective treatment for me. I would love to start being more active again.

While there are more treatment options for fibromyalgia than there are for my other WTF Diagnoses, it's clear just from the conflicting information a quick Google search provides that this condition is not well understood. Like my other WTF Diagnoses, it's unknown what the underlying cause for this condition is. There are a number of proposed causes, but none of them have been definitively proven. It more than likely has more than one cause. (I do have a suspicion I know what my trigger is, but it's just speculation on my part—I'll go into my hypothesis at a later date!)

A major concern is the number of people—both medical professionals and laypeople—who don't believe fibromyalgia is a real condition. Fortunately, this is becoming less of an issue, with it becoming a more accepted diagnosis and receiving more awareness from the general public in recent years.

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WTF Diagnoses: Myalgic encephalomyelitis

Despite the fact that myoclonus is the most visible part of my disability, it generally isn't the thing that affects my life on a day-to-day basis (unless I'm in a flare). What has the biggest impact on my daily life is a combination of two semi-interconnected conditions: ME/CFS and fibromyalgia. So WTF are those things? I'll split up those two diagnoses over two posts.

Myalgic encephalomyelitis, also known as* chronic fatigue syndrome or abbreviated as ME/CFS, is "a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion)." (Source.)

According to the CDC:

People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest. ME/CFS may get worse after any activity, whether it’s physical or mental. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with sleep, thinking and concentrating, pain, and dizziness. People with ME/CFS may not look ill. However,

• People with ME/CFS are not able to function the same way they did before they became ill.
• ME/CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal.
• ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life.
• ME/CFS can last for years and sometimes leads to serious disability.
• At least one in four ME/CFS patients is bed- or house-bound for long periods during their illness.

(Source)

The fatigue I feel with ME/CFS is not drowsiness or sleepiness, I'm just... tired. It's similar to the exhaustion you might experience at the tail-end of a bad cold or a case of the flu. I don't have trouble sleeping, and generally I get around 8-9 hours a night, going to sleep around the same time and waking up around the same time every day; but when I wake up it's difficult for me to get going, and some days I just can't get going at all.

As mentioned above, it doesn't matter if I get more sleep or if I take naps. If I overdo it, though, I will definitely crash and the symptoms will be worse. Generally I need to plan ahead whenever I plan activities, and schedule at least a couple days afterward to rest through the crash. If I'm not in a flare period, usually 2-3 days is sufficient (my crashes tend to be worse on the second day after a draining activity). If I'm in a flare... heh heh... heh heh heh...

Meme: Guess I'll Die

Another major symptom of ME/CFS is cognitive impairment, including brain fog and memory issues. When I'm in a flare the brain fog can be particularly bad, which makes concentration next to impossible. I'm a writer, but when I've got brain fog, I can't write. Just full stop. When I first got sick, I would still try, but it was like there was a brick wall in my brain between me and all the words of the English language. I would try the old "just draft garbage and fix it later" writing strategy, but I can't even write garbage when I have brain fog. I just sit there, staring at my computer trying to remember what I'm doing, where I was going with this, how to spell the word "wait" (no, no, it's not "wayt").

The best example I've found of brain fog is this vlog from Jessica Kellgren-Fozard's YouTube channel:

"" (Watch on YouTube)

She begins the vlog with a fun day out with her wife, which then leads to a crash—"hitting the wall," as she calls it. The CDC and ME Action Network refer to this as "post-exertional malaise" (PEM). This leaves her exhausted, weepy, disoriented and confused. And even when she thinks she's feeling better (around 5:00), it turns out... she's not actually as better as she thought (8:20).

(Jessica Kellgren-Fozard has a number of excellent videos about ME/CFS, including this one that actually defines and explains brain fog, but I always remember this Christmas vlog as the "Oh my God it's me" video.)

ME/CFS also causes chronic pain, but this is difficult for me to differentiate from the pain I experience from fibromyalgia, another condition I've been diagnosed with. So I'll leave the pain portion for my post about that.

ME/CFS is difficult to diagnose. According to the CDC, most medical schools in the US do not include it in their physician training, which means that many doctors are uninformed or underinformed about it. Many people with ME/CFS have indicated that they had a difficult time getting a diagnosis, often because their doctor doesn't take it seriously or doesn't know about it. I've been very fortunate because my primary care provider does know what it is and was amenable to it as a diagnosis. There isn't a test to diagnose ME/CFS, so it's typically diagnosed by symptom and by ruling out other possible factors. In my case, my doctor did bloodwork and ran tests for every other condition that could possibly be causing these symptoms, such as hypothyroidism. Because all my tests came back clean, my doctor was confident in this diagnosis.

ME/CFS is a bit more common than myoclonus, estimated to affect between one and two million Americans (around one in every 350 people, as opposed to one in 20,000 for general myoclonus). An estimated 75-85% of people with ME/CFS are women. At the moment, there isn't really an accepted treatment. Basically what I've been advised by my doctor is to be mindful of my symptoms, not push, and just hang in there when I'm having a flare. And since ME/CFS is unfortunately woefully understudied and underfunded, it looks like that will be my reality for the foreseeable future.

It can be a frustrating condition, but I've found that learning more about it and connecting with other people who have ME/CFS has helped me come to terms with it better. If you've come across this post and are in a similar position, I hope my blog or any of the resources linked in this post will be helpful for you!

* Some sources differentiate ME and CFS as two different conditions, though the terms are generally used interchangeably on sources such as the CDC, Wikipedia, and my own doctor.

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WTF Diagnoses: Essential Myoclonus

So if I'm chronicling my experiences with disability and chronic illness, it would make sense to start out talking about my diagnoses, right? In my experience, receiving diagnoses has not been a straightforward process, and even receiving a diagnosis hasn't translated to actually knowing what's wrong with my body, or being able to do anything about it.

Case in point, my first diagnosis: "Essential Myoclonus." As my doctors have told me repeatedly, this actually isn't a diagnosis. "Essential Myoclonus" is a symptom, not a diagnosis. What's it a symptom of? Five years later, that's still a mystery.

On top of the fact that it's also not a diagnosis, "Essential Myoclonus" isn't the most useful term to have on your medical chart. You'll see why in a minute. But first, what is myoclonus? According to the National Organization of Rare Diseases (NORD):

Myoclonus is the term used to describe the sudden, involuntary jerking of a muscle or group of muscles caused by muscle contractions. The twitching or jerking of muscles cannot be controlled by the person experiencing it. Myoclonic jerks may occur infrequently or many times a minute. They sometimes occur in response to an external event or when a person attempts to make a movement. By itself, myoclonus may be seen as a symptom rather than a disease. To some degree, it may occur occasionally to otherwise healthy people. (For instance, hiccups may be considered a type of myoclonus.)

That underlined bit has been the problem I've experienced when doctors see "essential myoclonus" on my chart—they're picturing something small, something minor, an annoyance but not life-inhibiting. The first time I had a myoclonic episode in my endocrinologist's office, he was like, "And what is this?" (Direct quote. It was kind of hilarious in retrospect.) When I told him that this was the myoclonus, he said that this was much more severe than what he was expecting when he saw it as an ongoing condition on my chart.

In severe cases, it can interfere with movement control and balance, and limit various everyday activities such as eating or talking.

Yeah. That. That's how my myoclonus is.

Whether these myoclonic episodes count as seizures has varied based on which doctor I'm talking to. Some consider them a type of non-epileptic seizure, particularly because myoclonic seizures do sometimes occur in people with epilepsy. Others don't consider them to be seizures by virtue of the fact that they are non-epileptic. I've found that colloquially, ordinary people seem to understand them better when explained as a form of seizure than when I try to refer to them as spasms, so I usually just go along with that. So if you see me mentioning a seizure on social media or in another blog post, this is what I'm talking about.

What do myoclonic episodes entail for me?

• If it's a minor episode, it may just appear as a twitch or a tic. My most common "minor episode" symptom is that my head will jerk to one side repeatedly. Sometimes in minor episodes my arm will jerk as well, or it will switch from my head jerking to my arm jerking.

• In the case of major episodes, I have intense, uncontrollable jerking and spasming all over my body. The jerks will tend to localize in one area for a period and then move to different parts of my body throughout the episode. Common localizations are in my legs, which will kick and thrash; my torso, which will basically have me doing involuntary crunches; and my face, which makes my eyes squeeze shut and my mouth either clench closed or open as wide as it will go. (The face localization looks really gross and scares the heck out of anyone who sees it, which could be seen as a plus or a minus, depending on how you look at it...) I will need to lie down in these cases and usually need someone to watch me to make sure I don't roll into a position where I might smother myself.

Did I mention that I'm 100% conscious and alert during all this? I'm awake, but depending on what's going on, I may not be able to respond. If it's localized in my face, I usually can't move my mouth because the muscles are spasming or stuck in a taut position.

As you can imagine, this can be really scary to see. I have had people call the paramedics for me, but they really can't do anything. I still remember lying on the floor of a clinic in 2014 while a bunch of paramedics hovered over me like, "Well, shit. I have never seen anything like this before." Always fun! So if you happen to see me having an episode, don't call 9-1-1; it won't help. Fortunately, at this point I've been having these episodes for so long that my family and my IRL best friend know how to handle it, and the odds of me being out without one of them nearby are very slim these days, so there's no need to worry.

Myoclonus can't be prevented, but episodes can usually be controlled with anti-convulsion medication once they've started. Untreated, episodes can last anywhere from a few minutes to several hours for the major ones. If an episode is severe enough, the anti-convulsion medication may not work, but usually that's not an issue.

"Essential myoclonus" seems to be pretty rare, though I had a hard time finding good data about it. NORD indicates that myoclonus in general affects 3-8 people out of every 100,000, if I'm understanding their statistics correctly. But this seems to include all forms of myoclonus, from epileptic to sleep (where you jerk when you're starting to fall asleep... I do that, too, actually). So I have no clue how many people have myoclonus like mine.

Regardless, I'm hoping that sharing my story might help anyone else out there who may experience symptoms like this and not know what's going on. (I mean, not like I know, either. But having someone out there who's going through the same thing as you might at least make you feel better!) If you or someone you know has been non-diagnosed with essential myoclonus, please feel free to leave a comment!

Back to blogging

Way back in the day, I had a LiveJournal account that doubled as my "author blog" and where I'd share more personal stuff. When I finally got my author website set up with WordPress CMS, it made sense for my author blog to go there and be integrated with my website, but the more I used that setup, the more I thought it would be inappropriate for me to share personal stuff there, so I phased that out. I missed having a place to blog about more personal subjects, though. That's why I decided to give it another go here.

My old posts are still saved on that LiveJournal account as private. I opted not to reactivate the LiveJournal due to changes to the platform over the years that make me leery of using/supporting it. That's why I decided to start over fresh here. Maybe at some point, depending on how things go, I'll import those entries here. There's a gap of about five years between my last post there and this one, but it may be interesting to people. We'll see.

For the most part, I want to use this blog to talk about my life with chronic illness and disability. I've resisted the label of disability for many years (even going back as far as those old entries from 2014, when I talk about my feelings toward the label in... a really internalized ableist fashion *facepalm*), but I've realized this year that resisting it has only been hurting myself in the long run. Additionally, as I've been in a severe flare the past couple months and have been spending quite a bit of time in bed, I've been watching YouTube videos from disabled activists such as Jessica Kellgren-Fozard, who helped me learn more about my own disabilities and chronic illnesses, and I realized that being so tight-lipped about my disabilities is also cutting off a potential resource for others who may be in similar circumstances to me. So I've decided I want to open up. I hope you'll come along for the ride!