When the Machine Thinks You’re Dead

Today I had Pulmonary Function Tests (PFTs) as part of my sleep-study evaluations. I’ve had them before. If you’re an asthmatic, you’ve had them plenty of times over the course of your life. Even my nephew when he was 5 was having them done due to his asthma. What made today quite out of the ordinary from my prior studies years ago is the machine essentially didn’t “see” me. I have begun to breathe so shallowly and slowly that I was invisible to the machine, effectively dead. If it were a heart monitor it would be flat-lining. It’s not quite a surprise that the machine didn’t pick up my breathing, both my current significant other and my ex-husband have both commented that they check on me at night as they can’t see my chest rise or fall. In short, they think I’m dead until I do my characteristic breath-in-like-I’ve-just-had-a-gag-removed yawn. The respiratory therapist was monetarily baffled by the event and looked at me and then back at the machine. She adjusted a few things then had to guide me to breathe properly. Who would have thought there is a proper way to breathe and that I had been doing it wrong all these years. I have to admit that how she had me breathing felt too fast and too deep. I thought I was going to pass out with the amount of muscle-movement required to sustain the breathing. And I’m not foreign to deep breathing. I was a professional singer at one point. But that was a long time ago now. And part of the reason I’m not is precisely this reason. My muscles simply do not support deep and normal breathing. They weaken, I get tired, I yawn in an attempt to get oxygen in. then I go back to shallow breathing.

This is one of those anomalies that still define my illness. I have diagnoses, but they don’t fully explain all the small idiosyncrasies that happen. The small stutters of physical function that just aren’t normal, but have no specific identifier associated with them yet. I used to be all idiosyncratic. A sign here; a sign there—here a symptom, there a symptom, Old McDowell on a farm ei ei o. But now most things fall into a diagnostic category, nice and neat. Except my breathing here. And my leg muscles a few months ago.

In April, I think, my memory has my many hospitalizations all run together this past year, I was hospitalized initially on suspicion of a stroke. I knew it wasn’t one, but because my clot risks are so severe and my cardiologist was the one who sent me in (I was diaphoretic, weak, pale, cold and looking sickly) they were cautious. What happened was simple. I gradually lost functioning of my limbs, mostly the legs. I couldn’t lift them. My muscles just went on me. My breathing isn’t different. All my muscles give out on me after a relatively short period of time of using them past exertion point. Walking around the block is almost impossible to do now. It’s a good day when I can get four houses down and four houses back from mine. I’m best after prednisone. I can walk longer, breathe better. But once that starts to wear off I’m back to feeling like ever stair is a gargantuan task that there’s no way on earth I can achieve it. And I have about twenty-stairs into my place. Ouch. This year it’s been worse than ever. And I can’t explain it. Once again I have a symptom that I just don’t know how to explain without it being dismissed as “all in my head” (used in the sarcastic, gender-specific, dismissive way) or simply responded to with a shrug of “I don’t know”.

This brings back an issue that I wrote about a lot in my first blog: The challenge of being taken seriously when you are a woman and/or when you have unusual symptoms. If you don’t fit the mold, most doctors don’t respond like House and start launching an investigation into your weird symptoms with fascination and clinical Sherlockian skill. Most determine quite quickly that you are doing one or more of the following:

1. Taking a deep-seated or not-so deep-seated problem and “converting” it through the amazing power of the unconscious brain into a physical symptom, known as a Conversion Disorder; this is especially true if it is neurological symptoms; if it’s generalized bodily symptoms it is known as a “Somatoform Disorder”—oh the pesky unconscious brain!


2. You think something is wrong with you but nothing really is, hypochondriasis


3. Finally, you have things wrong with you but have become preoccupied with them. The new DSM had to stay relevant somehow when more and more research fails to prove the first one on this list to be true. So now you’re nuts if you worry about what is actually wrong with you.

So the weak muscles have thrown me into the viper pit, so to speak, of having to talk with doctors about an unexplained phenomena that is getting worse not better. And the first doctor I have to talk with is my neurologist. She’s a great doctor, but I came to her when I was already diagnosed with neurological issues: epilepsy, strokes… all well documented. Now I have to enlist her help to think outside the box of “nothing is really wrong with you.”

And perhaps nothing is. Maybe it’s the breathing machine that has a problem.