Dynamic Disability In Color

At 11:30pm I awake to my heart pounding furiously, like I’ve been running a marathon in my sleep, in which my life depends on escaping a ravenous cheetah. Nausea overtakes me before my system can even come to comprehension. Semi-conscious and ill, the only thing I know I can and must do is throw the covers off immediately. Sweating, but not really noticing, the conditioned air hits the sweat creating an ice slick of discomfort. Internally I’m on fire but externally, this uncomfortable meat sack is clammy and cold. Fighting the urge to vomit, I sip some sodium water I keep on my nightstand for such occasions. After chilling myself to the bone, my heart rate begins to drop within a few minutes. I cover up with nothing but the thin, knit menopause blanket I ordered from the evil forest store in an attempt to sleep again. This entire debilitating fiasco repeats every 15-20 minutes until 3:30am, in which my body finally surrenders to its own exhaustive monotony and passes out.

In the morning I wake unrefreshed, like a truck ran over my chest, back, arms, hands, and hips. Just moving my arm to touch the screen of my phone sends pain rippling through my body. Reaching for my SLYND (progestin hormone replacement ie. birth control), I pop the little pill, take a swig of sodium water, and gently lay back down. In another hour, I awake for the day, taking five to ten minutes in bed just moving my joints, eliciting gripping aches throughout. After a few minutes, the body moves, but not without deep, bone crushing aches. The kind of ache that one feels after a death in grief, after having a car accident and waking up the next day. The kind of pain that sits and makes itself right at home in the bones.

The first thing I must do is make sure I don’t get up too quickly; when my POTS (Postural Orthostatic Tachycardia Syndrome) is aggravated I can easily become lightheaded, and have to start the process of getting out of bed all over again. Once I’ve successfully gotten up, I must do the sitting and standing dance again in order to relieve my bladder. “Don’t get up too fast this time, either, because passing out and hitting your head on the toilet can kill!”, the doctor once quipped as I sat in an appointment listening, despondent.

Tea, I find, helps calm the system if I can tolerate the heat of the liquid warming and sloshing against my insides. The orangish hue of ginger peach tea helps to at least give me something to look forward to.

After tea, it’s time for electrolytes in the form of popsicles or liquid IV. On days that I skip this step, especially in a flare, I regret it later. But who wants to start their day with unappealing artificial flavorings and dyes? Bright chartreuse, blood red, or purple? Yum, to sugar alternatives and manufactured color! It’s a constant battle between choosing those or drinking a 30oz ceramic-lined (stainless steel leaches nickel into the water and I’m deathly allergic to nickel) yellow water tumbler full of salt water, which does take some getting used too. More often than not, I choose the water infused with table salt.

On the way to physical therapy for cervical spine and lower back issues, I struggle to regulate. Chronic muscle tension causes an array of issues including cervicogenic dizziness and instability. The muscles brace indefinitely for pain. Pain that comes and goes dependent on the day. Anytime I stand up, I must be intentional, deliberate, and slow - so slow. Today was a refresher in dynamic disability.

The body, when in flare, humbles my ambitious impulses. I’ve been in a POTS flare since I overdid it on the beach by just…existing in the heat…11 days ago. The body keeps the score so to speak, just as the book title would suggest. Standing creates a symphony of discord within the autonomic nervous system. Getting up too quickly from the couch to get into the car hit me just as I was traversing the concrete stairs leading to the driveway. The lightheadedness is so commonplace in life now that often times I forget to pay attention to the sensation. Slowly fading step-by-step, I remember to - at a bare minimum - bend over for a moment. As I bend, things slowly start to go black around the edges. Shit. Ah, but wait! The bend gives me enough momentum to make it into my front seat to collapse. Sitting alleviates the lightheadedness, but requires pause. The kids are restless, calling out to me to start the car.

“Just a minute, boys, I’m not feeling well,” I say, breathlessly. I say it so often, feeling unwell, that I am beginning to loathe it - to loathe myself.

Driving isn’t the most comfortable, but necessary for most Americans. Essentially, I only go to doctor’s appointments when I’m in a flare. Luckily, my husband drives us everywhere else when he’s home.

Getting out of the car is also a feat of epic proportion. Standing up, I feel alright. Maybe I’m finally starting to turn a corner? I think as I start putting one foot in front of the other. Oh how my own naivety about my illness tricks my brain into believing. Maybe it isn’t just naivety; maybe, just maybe, the feelings I’m having are rooted in nothing other than internalized ableism.

About ten feet from the door I start to stumble. With less warning than before, I stop in order to get my bearings. The kids are none the wiser, playing games on their iPad to pass the time. I quickly check my pulse, as has become routine living with POTS. It’s high. I can feel my heart pounding through my carotid, pulsing into my head, pounding in the ears. Chest muscles tighten. My stomach flips and squirms. Slowly, I become more and more unsteady, uneasy.

It’s only two doors away and ten feet inside, I say to myself in the form of a small mental pep rally. Then, I can sit again. Swaying, nauseated, and light-headed, I use what little energy that isn’t being put into holding me upright into opening the door. Plopping into the chair, I notice there’s only three minutes until my appointment. Praying softly, I hope that I don’t have to get up again until at least the three minute mark. Chronic tension takes over to hold me upright, and the neck and back pains begin to overwhelm, even as the POTS symptoms continue to wreak havoc.

Physical therapy always helps me in a multitude of ways. Not in small part, due to the interaction I get with another adult each week. No matter which PT I’ve had, I usually get along with them relatively well. It’s quite lonely without much family around or close friends to close the gap. My most recent therapist has been helping with my upper back issues and lower back pain and mobility for about two years now. Delving into numerous medical and cultural topics while simultaneously digging into my spine, it’s a procedure that’s truly healing.

The bright white sunlight is blinding, not to mention overwhelming to my thermal regulation. Overheating is so easy when in a POTS flare. The last time I had an acute reaction to the heat I also became hypoglycemic. Heart pounding, chest aching, gasping for air, unable to sleep, I wonder if this is finally the time that I am dying. Am I actually dying? I often feel like I might be dying. Sobbing, sometimes, I wish for death. Yet no, I’m not dying. The panel of doctors: Rheumatology, Cardiology, Endocrinology, Dermatology, Gynecology, Menopause Specialist, the General Practitioner, and others have reassured me of this fact. I just get to relive the sensation of dying over and again, sometimes more than fifty times a day. In the worst of times, death itself seems preferable to dealing with feeling like death to the point of exhaustion. Sleep eludes me, and pain and anxiety overcome.

In conjunction with dysautonomia (POTS), I have an auto-inflammatory disease called Hidradenitis Suppurativa (HS). From the age of 15, I began to get boils on my body, but mostly in my groin and underarms. For years doctors would insist it was folliculitis, an STD, or herpes, even when I hadn't yet been sexually active. Such a disease can make you feel ashamed, or dirty even. Medical professionals dismissed me at best, and ridiculed me at worst. At 24, when I finally got an appropriate diagnosis, not much was known about the disease. Not much other than it was my fault for being fat and unclean, as the callous doctor casually suggested. I was prescribed topical antibiotics and told to lose weight, which I’d already been attempting to do since the age of eleven.

HS is not just a skin disease. It’s one of the worst skin diseases currently known. So much so that many dermatologists when interviewed say that the one disease they would never want after treating patients is Hidradenitis. Thankfully, I am considered stage one, but even so it’s still a painful and debilitating disease. What research has found is that aside from the horrific painful abscesses that form deeply under the skin, HS is not a bacterial issue. It’s in fact an auto-inflammatory (and possibly an auto-immune) disease, akin to Crohn's disease and Rheumatoid Arthritis (both of which are comorbid up to 50% of the time). This disease causes system-wide inflammation - not just localized inflammation and pain. This means that people with HS can experience chronic, body-wide joint and muscle pain, as I do. In a flare, HS patients can even develop low grade fevers and flu symptoms. Many patients end up taking immunosuppressant drugs, such as Humira, to dampen the immune cells. Thankfully, I am not yet to that point, though it has been brought up in my meetings with dermatology.

Aside from PT, the doctors all agree to disagree. Cardiology wants me to sit or lay down anytime I experience symptoms which is sometimes only three times a day, but a lot of the time upwards of ten, twenty, or even fifty times a day. I must say, I’ve sat down in the middle of a supermarket aisle more than once. Yet, strangely, they also recommend a 5-day per week, 35 minutes per day minimum exercise regimen so my muscles don’t decondition. Which not only directly conflicts with my POTS symptoms, but also makes my skin disease impossible to manage. With HS, I am told to shower every time I sweat. If I actually followed that advice, I’d be showering at least twice a day or more between exercise and night-sweats. But, I also have chronically dry skin, keratosis, and eczema, which all call for less showering - either every other day or three times per week. I’m supposed to try yoga or strength training, but my chronic muscle tension and CPTSD prevent the proper muscle groups from engaging - so strength training without proper muscle engagement is actually harmful to the body. No matter way you slice the pie, it’s all a sliver of shit, treatment-wise.

Unfortunately, when I experience a flare of one disease or syndrome, I frequently experience a flare in another. Watching the greenery sway in the breeze outside my window, I’m grateful for CBD today. CBD has been one of the only medicines I can take which alleviates the inflammatory zings I feel, and tempers the anxiety induced by both POTS and HS. Not to mention, it helps with everything related to perimenopause, which I am also going through at the same time.

Upon returning home, I realized a familiar soreness in my groin. Although, it was not in a place I was usually accustomed. To my horror, I found a pea-sized, painful lump in my labia minora. Not the way I wanted to start my day, although with the POTS already having taken precedence earlier, I had to not-so-politely inform the HS that it had sadly missed its window of opportunity to be the first to rain on my parade. I popped my second CBD gummy, and took it all in with a grain of salt - literally.

Blue. Everything is blue. I feel blue. Da-bu-dee-da-bu-die, dabudee-dabudie.

Honestly, how could someone not feel a shade of depression and anxiety from such issues? I wouldn’t know. I do try to find at least a little bit of joy each day in something simple. A warm drink. A short bask in the sun. Watching the iridescent dragonflies hover over the sunset tiger lillies. Something to bring a smile to my face, to remind me of the life I lead when dynamic disability isn’t the driver of my car.

That’s what’s so grueling, so frustrating about dynamic disability. It’s often times invisible. It’s not static, meaning it’s not something you deal with consistently all the time. It comes and goes like summer rain. Sometimes, you can do so much more. Sometimes, you feel normal. Sometimes, you forget that one day there will be limitations again. One day, you’ll struggle again. On the flip side, in the days I’m struggling, the weeks I’m trying to just make it through the day, I try to remind myself that it’s all temporary. One day I’ll be up and at ‘em again.

In a deeper, more introspective and meaningful way, I suddenly realize it is truly all temporary. The pain. The dizziness. The Lillies. The dragonflies. The trees. Life. It is all so precious and so fleeting. Having dynamic disability fucking sucks, and there’s no way around it. But, it also is a frequent reminder to seize each day - when I can, of course. To hug my children. To kiss my spouse. To make love with life. Disability invokes an array of feelings. Life holds those feelings and transforms them into living color.

To learn more about POTS, Dysautonomia, or HS, please click the links in the article above. If someone you love has these conditions, it is important to have a basic understanding of the illness and empathy for what these people important to you endure during flares. *Being dynamically disabled is an isolating experience, and receiving understanding and empathy from those close to you can be of phenomenal comfort.