19-23 Days 'til Trea, #3: A Day in the Life

Feb. 1, 2026

When I began writing this blog post it was not a great breathing day. That morning I got up, did my normal routine of coffee, play with the dogs, breathing treatment, & breakfast. During that entire time I actually felt pretty good and even better, I was breathing very well. . . And then I wasn’t. After breakfast I plopped down on the sofa to watch the morning news and the sensation of my airways clamping down tight, allowing the very least amount of air as possible to slip through, the uncontrollable shaking from the inside out, the light headedness came out of freaking nowhere. I sat there for several minutes concentrating on breathing in through the nose from the diaphragm and out through the mouth, slow and steady. It soon became clear that I was going to need more assistance than that, so to Pappy & O2 I went and on Pappy-O I stayed.

This leads me to my thoughts for this post. What constitutes a bad breathing day for someone with TBM and what

brings it on? Of course, being short of breath is the main ingredient, however, each of us who have this insidious disease experience differing symptoms, meaning I can only speak for myself when describing a bad breathing day (bbd) for you. Like the other day, so many of these episodes come from out of the blue, with no warning, no trigger, nothing, nada – just a switch turned from off to on. Other times, I receive advanced notice, like developing a cold, asthma flair, upper respiratory infection, the flu, etc., which subsequently leads to shallow

breathing, shortness of breath, and the like.

When I’m having a bbd, I experience a variety of symptoms that go beyond simply being short of breath. As I mentioned above, whenever I’m having a bbd, it is always accompanied by jittery shakes. In fact, most of the time those telltale shakes in my hands are the first sign that I am already feeling off or that I will be soon, like as soon as I try to walk up the stairs soon. Without fail, as the shakes grow stronger and I start feeling them deep within my being as work their way up and out. The travel through my midsection/torso to the top of my trachea & esophagus where they park, idling like supped up fast car that’s ready to take off, as they continue blocking the air from coming in or getting out. They continue to travel through my neck, shoulders, arms, hands and fingers until there is nowhere else to go other than out. Fortunately, the jitters rarely seem to travel south to impact the lower portion of my body. Win for me!

The jittery shakes from deep within, but with varying degrees of intensity. Nonetheless, even the slightest tremor can make doing simple tasks difficult at best. Cutting up fruits and vegetables with a sharp knife, using scissors or holding a glass can be pretty tricky! My normal very pretty, smoothly delicate, loopy handwriting becomes no better than when signing my name on an electronic signature pad; barely legible. Sometimes as I’m sitting still I can feel my chest cavity & shoulder joints quivering, which feels akin to a muscle spasm but not painful. My neck also

quivers, turning my head into a bobble head doll! I’ve even been awakened a few times by the shaking of my neck and head. That’s a relatively new, very annoying occurrence. And then there are my hands. From the elbow down through my fingertips jittery shakes take over and there’s really nothing that calms them. It may be a slight, barely perceptible quiver to a full on OMG I need to sit on my hands to make the shaking stop.

Seriously though, I’ve asked multiple doctors why I shake so badly any time I’m not breathing the best. None of them have had an answer other than, “you’re probably not getting enough oxygen.” Makes sense, right? It would if it wasn’t followed by a glance at my vitals and the comment, “Well, your O2 looks good. You’re not desaturating.” Just a reminder, TBMers do not tend to desaturate the majority of the time when we’re having a bbd. Doctors never seem to hear that and continue to use that marker to tell me I’m getting plenty of O2, so I should be good. . . . Let that sink in. No matter how many people I tell or how many times I say this pertinent fact, I hear that statement every single time I go to the doctor, urgent care, the ER. Every. Time.

Between being short of breath and shaking, my voice is also impacted. Most of you know that I already have a very quiet voice, which makes it hard to hear me on a regular day (just ask my parents!), but nearly impossible when I’m having a bbd. Being unable to regulate my breathing makes my voice go a few octaves lower and become even more quiet, no more than a whisper at times. Other than the obviousness of being unable to breathe, I honestly think this symptom is the most impactful for me. I’m not intentionally lowing my voice or making it quiver. It is truly a chore at times to talk. It’s so much fun, said no one ever! 

I’m constantly being asked to “speak up, I can’t hear you,” or to repeat what I just said multiple times. The first time getting whatever fabulous thing I’m saying out is difficult enough, but having to force words out of my mouth to repeat myself multiple times is completely draining. My mom even gave a microphone to use when I’m like this. (It’s very cute red, black & gold one!) We keep forgetting about it, though! I’m going to get that sucker out right after I publish this post. It really does help and cuts way back on the number of times I have to find the energy to repeat myself over and over.

So, what does it actually feel like when I’m having a bbd. It does not feel good and can be anxiety and/or scary at times. I’ve thought a lot about how to describe it to you, and I think I came up with something that may do a decent job. What is happening when I breathe is that my airway “tubes” clamp down. The more I exert myself or breathe harder, the tighter they clamp down; trapping the air in my lungs and throughout those tubes. It feels like there are concrete barriers/barricades set up all throughout my airways blocking the air from doing its job. I chose concrete barriers instead of hurdles because hurdles are light and breezy. You can, let’s say, easily jump over, go under, go around or even just knock the things over and be on your merry way. Not so with concrete barriers set up to completely block access to your destination.

The air is trapped, ensnared, caught. It is stuck. Sometimes that oh so precious air sits at the top and sometimes at the bottom of the tubes. At other times it’s just stuck all the way through. Those times are the worst. I do some intentional breathing, taking deep breath after deep breath in order to get even the slightest amount of air past those impenetrable barriers. One, five, or even ten breaths is usually never enough to begin to budge that dang barrier even the slightest bit. I keep going because eventually I will jump over, not remove it, but going over works too, and will be able to finally feel the sweet release of air moving. When I do manage to get over the barriers, each wisp of air ricochets/reverberates ever so slowly through the trachea and bronchi as it makes its way down to my lungs or up the same path to escape its captivity and leave my body. How sweet it is! Even the tiniest movement of air offers the most incredible release; it’s amazingly life affirming. I can finally relax; at least for a few breaths until it gets stuck once again and I have to repeat that entire process again over and over and over.

Aside from the airways clamping down to trap air, my chest is also very tight and heavy. You’ve all heard people say if feels like and elephant is sitting on my chest when describing being short of breath. While that works, I just never felt that it adequately describes how TBM feels for me. It’s more centrally concentrated than the full chest tightness of an elephant’s behind parked on your frontside! So perhaps instead of the elephants behind, more like it’s pressing the very edge of his hoof straight down into the valley located between the breasts. There’s an intense ache that tightly radiates out, just below the breast plate. The ache also travels north and south along the trachea and main-stem bronchi. I swear I can feel my airways literally straining with each breath I take, fiercely working to force the air in and out of the deflated tubes of cartilage that are clamped down, refusing to crack open even the smallest amounts. It’s not the most comfortable feeling in the world, to say the least. I think this describes the sensation of trapped air pretty well, from my experiences at least. Others may have a different experience with their symptoms; that’s how we TBMers roll!

During the last year or two I have developed a balance/gate disorder called multifactorial gait disorder, or as I loving refer to it, wonky walking. On good days I can have a slight sway, stumble over thin air and become lightheaded/dizzy if I turn too fast or bend over and come back up too quickly. I frequently have to catch myself or grab on to a chair or railing to steady myself. On bbds, look out! I sway and stumble like nobody’s business. I look just like one of those extremely tall blowup windsock dolls businesses use to draw attention to themselves. Something that quite frankly I would definitely do not want to do. I’d much rather go unnoticed and meld in with the background. However, on wonky walking days that becomes slightly difficult. People are constantly asking if I’m OK, if I need anything, do I need to sit down, etc. Nope, most of the time I just need to be very aware of where my feet are and not move too fast. Oh, or turn or shake my head as I’m walking because I stray off in the opposite direction of where I’m looking or stumble enough that I seriously need to catch myself midair or find something to grab onto to steady myself as I wait for the lightheadedness to subside. I’m sure it’s quite entertaining if you are a spectator to this side trick of mine.

Never fear, we are working to figure out this wonky walking situation, though. I have a wonderful neurologist, and I’ve had two MRIs that show nothing much to be concerned with. Our next move is to go to an ENT to check out my inner ears, which is where we suspect the problem originates from. I have an appoint with one later this spring when we return from my surgery. We’re hoping for some answers at that time.

I also experience headaches on bbds. I have been prone to migraines ever since the mold experiment that led me to this path I’m on now with TBM. However, these particular headaches do not usually scale up to a full-blown migraine. They do get pretty intense, tho. I think they’re mostly from stress, tension, or not being very mobile for days at a time. These headaches always start at the base of my neck and wrap themselves under and around the bottom of my skull. From there they slide down onto my neck and shoulders and then eventually jut up into the temples and begin pounding on them in a slightly off tempo rhythm that is just freakin’ annoying and painful.

My doctors think they may be caused from not getting quite as much oxygen as I should be and tensing up my muscles from a little thing called anxiety. Even if I may not feel anxious it’s usually still there, lurking in the background wreaking its normal unseen havoc. I do have a very old prescription for a low dose of an anxiety medicine on hand. I can’t even take a whole pill because it totally knocks me out. Can you guess what a full pill does – knocks me out for a good 24 hours and then leaves me in a drug fuzzy, hazy hangover for another day. I do not like taking them at all. More importantly, though, such pills lower your breathing rate. With mine already being low and strained, the two don’t mix very well on bbds. Don’t get me wrong if I find myself racing towards a full-blown panic attack that I can’t talk myself down from, I will reach for half of one. I’ve gotten very good at spotting the signs of a panic attack and know how to stop it from getting out of control, so I rarely, if ever, reach for even that half of a pill. I’m not sure if it’s a such a positive thing that I’m so familiar with my body’s breathing, or rather inability to breathe, that I can automatically spot and stop the first inkling of panic in its place.

Oh, I forgot to mention the teeth chattering when I was discussing the jittery shakes. You guessed it those shakes go all the way up into my teeth. Imagine being so cold that your teeth can’t stop chattering. That’s pretty much what my teeth do on bbds. Sometimes I even wake up to the jittery chattering of my teeth and like the Energizer Bunny, they go all day, chattering along and singing their jittery chattery song until my breathing finally normalizes back to my base point. Good stuff right there, isn’t it?

I’m sure there are other smaller symptoms here and there that attach themselves to my person as I struggle to breath, but I think the last really significant TBM bbd symptoms I'll discuss, asthma exasperations, or when they’re locked in a fierce battle for every single breath I take, are brain fog and fatigue. Overwhelming, all encompassing, drained to the bone fatigue. Between being short of breath, not being able to make my brain work and the fatigue itself, there are days I literally can’t keep my eyes open. Getting up to brush my teeth or get something to drink are chores that seem impossible to accomplish so I have to psych myself up for what sometimes seems like hours before I can accomplish such lofty goals.

Speaking of lofty, lofty thinking is way out of reach during bbds. My brain refuses to be of much use or think about anything with any measure of depth whatsoever. Short-term and long-term memories are regularly lost to me. Or makes what should be a simple reach into my mental filing cabinet to pull out whatever memory I’m seeking a struggle. Those suckers are locked up tight. I will search and search and search for the circumstance

surrounding the situations, or things, I’m hoping to recall and may even get right up to the point where I’m almost able to reach out and grab it and then poof; it’s gone. Locked back tightly in its filing cabinet. For short term recall

I’ve taken to writing everything down and making lists upon lists. I sometimes write out my lists on paper and on my phone just to make sure I have access to whatever is on my lists whenever/wherever possible. Granted I’ve always been a list maker, so this part isn’t all that new to me. Yet the inability to automatically to recall even the simplest of items on my short-term memory recall list most definitely is new(ish). I’ve gotten used to list making and locked filing cabinets and have found various ways to help work within those confines. I do know that while I may not have immediate recall, I will eventually be able to pull the memories out of the fog or at least find my lists!

So to sum up what I experience on bbds, it’s a lot! I’m a completely fatigued, short of breath, jittery shaking, wonky walking, teeth chattering, head hurting, anxiety ridden, no memory recall shell of a woman. In so many ways I’m not the strong, independent, competent, successful woman I once was. However, in so many other ways I’m actually stronger and more competent to handle the curveballs in life thrown at me that I never saw coming. For all the ugly, lonely darkness that comes with suffering from chronic illness and a rare respiratory disease that so many do not know about or begin to understand, there is beauty in the darkness and lessons to be learned and shared with others who find themselves enshrouded in the ugly, lonely darkness and the people in our lives. Life is beautiful and worth slowing down to take it all in breath by beautifully vital breath.

As always, thank you for stopping by and taking time to participate in my journey. I truly appreciate all of you. Your love and support help keep me going in the times when I don’t know how I’ll ever make it through to my next full easy breath. Love and blessing to you all.

PS: I failed to mention coughing fits and mucus. Those might be the most entertaining parts of TBM! This post is already pretty long, so I will write more later on these two because there's so much to say about these two wonderful occurrences.

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