I recently started running and working out again after taking the month of January off. I didn't want to take January off, but series of illnesses passing through made taking long naps the more prudent church. It happens.

​Ironically, the day before the first sickness was pretty excellent. I went on a long and delightful trail run, feeling better than I had since the previous spring. Developing an achy fever 24 hours later has me shaking my head when I think about it. 

Two weeks later, the second sickness - this time Covid - cropped up the day after I did some light floor exercises. It was my first time doing any sort of workout since the fever. I wasn't nearly as wiped out this time around, but the irony wasn't wasted on me.

Like I said, it happens.

Running and other workouts are a tricky venture because exercise both alleviates and aggravates my chronic symptoms. When done right, getting up and moving improves my focus and reduces my symptoms. However, if I push myself a little too hard, the next several days are rough. Vertigo, hand tremors, stumbling speech, all sorts of clumsy, fuzzy goodness.

It's like my circuits get over loaded and they require reduced demands while they sort themselves out. There's nothing to do but wait a bit and try again.

Whether I take this in stride or have a raging temper tantrum about these setbacks depends upon the day. It is disheartening to delay or decline activities because my brain is too staticky to function that day. Fortunately, I've become pretty fluent in reading and managing my symptoms. I also keep reminding myself the goal is a good life. Bad days are allowed in a good life.

I am optimistic, but also aware that things could quite suddenly go very wrong.

This tricky balance has been on my mind lately because, in three weeks, I getting a 6 hour EEG. This test is long awaited and I am excited. My intent is to do what I can to ensure I have symptoms while in that room. Whatever the results are, I want the neuro team to see something. Worst case scenario would be having no visible symptoms AND no activity detected by the electrodes.

I know what I need to do to become symptomatic. A few limit-pushing runs in the week prior will take care of that. The tricky bit is that I have things to do! I want to go all-in and just wipe myself out. At the same time, I want my wits about me in order to take care of new work responsibilities and life in general.

Knowing that I'm about to cause myself to become a fuzzy-headed grump makes me cringe. It takes so long to get on solid ground again. At the same time, this is a big picture choice. Being a cranky mess for the month of March could very likely lead to some lifetime benefits.

At least that's what I keep telling myself.
​

Today I've been contemplating the nature of words, their meanings, and how people use them. Specifically, I'm thinking about the differences in how individuals interpret words, and the miscommunications (and manipulations) that result. Even more specifically, I'm wondering how to communicate with individuals who use language in a completely different way that I do.

One of the trickiest things about not having a diagnosis for my chronic illness is that it takes a long time to explain what I am experiencing. Every time I go to the doctor, it is a hit or miss description of symptoms that may or may not be related. If I get a clear diagnosis, I will still need to talk through my symptoms, but a diagnosis will set the context. It will, I hope, make for smoother communication. In the meantime, I keep working to improve my medical vocabulary.

​For example, not long after my first seizure, I started experiencing intense dizziness and disorientation. The feeling was very similar to still being drunk while also feeling the beginnings of a hangover. Diagnosed with vertigo, I went to vestibular therapy. My excellent physical therapist figured out that the root cause of my dizziness was an eye-brain communication issue, likely a consequence of the seizure. The therapy helped a lot, although bouts of vertigo still pop up every now and again.

In talking to new doctors (I had to switch because I moved cities), when I would speak of having vertigo or experiencing dizziness, the doctor would automatically want to recommend me to an ENT to have my ears checked out. I would explain, no, that's not my problem and tell them about the vestibular therapy. This conversation happened regularly, even with the same doctors. While I did in fact have vertigo and experience dizziness, it seemed these words meant something different to the doctors.

While venting my frustrations with a friend who is a PT with loads of neuro experience, she pointed out that for many, the word "dizzy" communicates and image of spinning rooms and terrible balance. My experience, however, is more like intense static that is hard to tolerate. I am disoriented, but my balance is fine. After talking with her, I've started using the words like "static" or "fuzzy" to describe the sensation. I am also more upfront about saying I've been cleared of any inner ear issue.

This made a huge difference this past fall when I moved yet again and started up with new doctors. Explaining my symptoms went so much smoother and, as a result, they were better able to help me move forward with testing and treatment. It was a lot of work to get to that point, but new that I needed to be understood in order have the right questions asked. Yes, the medical team play a part in this, but since the words I was using wasn't getting the result I wanted, I needed to change my words.

I bring all of this up because I want to figure out how to clearly communicate with people who are very emotional in their communication style. I'm talking about people who use lots of buzzwords, hyperbole, and highly emotive language. Being more measured in what I choose to say, I find this confusing and find myself becoming skeptical of everything they say. Sometimes I feel I'm being manipulated, like the speaker wants the audience to respond a specific way and is doing everything in their power to get that response. I want to shout, "Just tell your damn story! People will respond how people respond!"

An example of this is a woman I know who will spend paragraphs telling people how vulnerable she's about to be before writing a rather vague story. In my experience, anyone who can talk that long about how vulnerable they're being isn't being vulnerable. They're using that word as a shield, a way to increase encouragement and decrease pushback. In real vulnerability, the people involved are too much in the moment, too busy facing the risk and fear to think of anything else. Vulnerability is recognized after the fact, when one has had time to breath and reflect.

This woman is one of two individuals in my life that I need to talk to. Individuals who throw around words like "boundaries" and "honesty" all while avoiding truths they don't want to deal with. Neither have made a genuine effort to understand an experience outside their own. To be frank, I'd happily walk away from both these toxic people, but circumstances won't allow it. They are in my life for the long term. 

So, since they will make no effort to learn my vocabulary, I need to use theirs. 

​Blerg.