Emotional destruction

.Reading time 3 minutes.

You know the pain. The mental and emotional annihilation. When your stomach drops and your heart tightens. It happens to everyone. Multiple times. Throughout your life, that feeling will waver and heighten over and over again. It will occur in friendships, romances, with peers, in the workplace, around strangers, and every other type of setting where you’ve put yourself on the line in someway. Those experiences take a toll on the broken bodied in more dramatic ways.

We don’t casually feel the physical effects of an emotional hit. We FEEL the hit. That stomach dropping moment turns into a day’s worth of nausea and vomiting. A tightening chest causes real palpitations. The flush and surge of adrenaline rolling through becomes a trigger for full-body autonomic dysfunction. Stress and nervousness about the future becomes migraine fuel. Tingling skin and feeling weighed down manifests in severe pain and amplifying any formally quiet symptoms.

Our mental health is already precarious. We work hard, every single day, to maintain positivity and a good attitude. Facing a reality of perpetual pain and constantly evolving symptoms, takes a lot of energy. When we can engage with people, we put everything we have into the relationship. Even the temporary or work-centric ones. They get every bit of us that isn’t focused solely on survival. We push down symptoms and find solace in sharing ordinary interactions with others. Relishing those moments, we also open ourselves to excessive damage.

Our tolerance for pain is high. Living in anguish is nothing new. When an emotionally traumatic moment happens, that already full system overflows. The small wave of embarrassment and associated physical manifestations that an average person experiences, is our flood. We grasp onto buoys of normalcy. Those daily symptoms look so safe and predictable! But, being swept away by our hijacked physiology doesn’t leave much hope for floating peacefully above the fray.

We have to relax into the mess. Feel all the feelings. Acknowledge the physical turmoil. You won’t drown. Practice finding microseconds of control. If it means talking to yourself, praying, meditating, sleeping, eating a comfort food, crying, laughing, or whatever. Find those moments and start making them larger. Let them take up the spaces that have been destroyed. Find comfort in old symptoms that pop back up. Watch yourself even out and get back to your baseline. You are getting stronger.

What’s the alternative?

.Reading time 8 minutes.

I’ve lost count of the number of prescription medications that I have tried. At last count, the number was creeping into the upper 50s. Yep. From the time of my first, body-destroying migraine until today, I have tried over fifty separate pharmaceutical drugs. I’m not counting the intravenous or in-hospital abortive meds. Just the pills, patches, tablets, and creams that I’ve put into my body. 

When it comes to prescription medications, once is rarely enough. Often, the formulas are designed to work over time or build up in your system. Most doctors will tell you to try a drug for at least two weeks to give it a fighting chance. There are exceptions to this rule, and some meds are suppose to work immediately, but chances are that you’ll have to try that drug a few times over in order to accurately decide if it is effective. 

Of course, efficacy isn’t the only perimeter for deciding if a medication works for you. There are also the side effects. Ugh… Just thinking about the intense and nasty problems arising from prescription drugs… They can be overwhelming, and life altering. 

It’s important to learn your body’s response “hot spots”. I know that my stomach, heart, and skin are ultra-sensitive. I’m most likely to experience medication side effects, which target those areas. Because of this, I push through lightly aggravating symptoms and wait to see if they disappear or get worse. Then, I ask myself, is the medication working well enough? If so, then sometimes the side effects are worth it. I’ve had severe reactions to medications. Unfortunately, I’ve even developed chronic symptoms from medications I spent too much time on. That balancing game isn’t always easy. But, what happens when you want to dabble in so-called alternative treatments?

Maybe, you are tired of all the pills. Perhaps, you want to try something with a less dramatic impact on your physical and mental health. Alternatives can feel more approachable, less invasive, and more socially acceptable. Some of them even work! Whether it is a placebo effect or an actual physiological shift, therapies outside of “Western” medicine can significantly help chronic pain and disease sufferers.

Money is the umbrella issue when it comes to alternative treatments. Insurance rarely covers fringe treatments and therapies. More commonly accepted procedures like chiropractic work, physical therapy, and acupuncture are occasionally offered by insurance companies. If so, the frequency will usually be insufficient and complementary services/pills/products are not covered. Doctors working in the modern world are typically dubious of alternative therapies. While, this attitude is slowly changing. Very slowly. “Western” medicine still reigns supreme and is the definitive treatment method.

As I’ve discussed before, I have done a lot of experimenting throughout my medical journey. Alternative and “Eastern” medicines have been (and continue to be) a part of that trip. Here are some of my accounts. Keep in mind, these are very personal experiences and are not recommendations nor should they dissuade you from trying alternatives. As always, follow your gut and sound medical advice from a trusted professional.

Acupuncture has not been effective. I appreciate the science and history behind it, but I have not experienced any tangible progress. Positive note – very relaxing.

Massage/acupressure has been effective. The cost of this treatment is prohibitive and finding someone who knows how to work with my medical conditions is difficult. Positive note – acts as preventative therapy when done frequently.

Craniosacral/bodywork has been effective. This falls on the far side of the proven treatment tab and qualified professionals are hard to find, but it works. Positive note – noninvasive and simple to fit into a weekly schedule.

Marijuana has not been effective. Weed, especially high CBD/THC combination products are typically successful and should be a more common treatment modality. In my case, they just don’t provide sufficient pain relief or sleep. It is considered “illegal” in many states and countries. Positive note – extremely safe. There are hundreds of types, forms, and combinations that help people with their symptoms.

Herbal remedies show some effectiveness. Finding high-quality supplements can be difficult and very expensive. You have to try a wide variety and combination of herbs to find the right match, which changes over time. Positive note – lower risk and less dramatic side effects.

Meditation/prayer/breathwork has been effective. The largest caveat to this one, is being able to get into a meditative headspace. It takes time, practice, and self-forgiveness as you try navigating this with chronic pain. Positive note- no cost and doable anywhere.

Physical therapy has been effective. Once again, cost and finding a therapist who knows how to work with your medical issues is difficult. Positive note – fast results and general cultural acceptance.

Art/Talk/Biofeedback therapy has been effective. There are many low-cost options and various types of treatments that, if nothing else, can support mental health. You can also do these therapies in your own home. Positive note – Almost universally effective and available. Strong mental health support is vital to healing physical aliments.   

I’m sure that there are some alternative treatments and therapies that I haven’t listed. There are many that I have yet to try. Just know that your chronic pain and symptom management experiences will probably fall on both sides of traditional verses modern medicine. The two should be used in conjunction with any self-care habits you have developed. Even small affordable moments, such as having a cup of tea in a quiet setting, can bring a sigh of relief to your body and mind. If they work FOR YOU, then keep it up. Your medical choices are just that, yours. 

Night times

.Reading time 3 minutes.

A troll lives in my bedroom. Sometimes, most times, at night times, I feel him eating my feet. 

He’s a big ‘ole troll. With a mouth as wide as it is deep. Having stones for teeth, their jagged and cragged bottoms dispel any illusions that the smooth fronts might create. These teeth, they don’t just crunch, they saw. Back and forth. Side to side.

The first bite is always a shock. Instead of going for the toes, he clamps down in the middle of the foot. Both feet. At the same time. Grinding and pulling, the troll tries to pull skin from the foot as you would sap from sugar cane. Mashing and biting. His breath is so hot. Years of digested skin, bones, and blood rocket out a damp scorching wind. It burns like acid. 

He hates it when I move. Stopping still with his mouth agape, I feel the pebbles and broken gravel falling from his gums. They smash down on my bones, but it feels like bliss compared to those crushing stones. Those boulders that leave invisible cuts up and down my legs when he gets ravenous. Trolls are very greedy. He’s even gone for my hands and arms from time to time! 

Tonight, I could have sworn that he finally took a part of me home in his belly. His jaws clamped down on my feet as he twisted his massive head side to side. Just as my mangled feet slipped from his mouth, he bit down. I think it was with all of his might, as the room shook from the force. The troll’s enormous teeth cracked my burnt and broken toes. The pains radiated up my legs. He was tearing my feet apart with a mature type of callousness and vigor. 

But, I’ve learned that while you can’t shake a troll, you can shrink them. I used all of my strength to rip my feet from his torrid mouth. Tenderly placing my legs on the edge of the bed, I sat up. Down he went. Not quite small enough, those teeth still nipping at me. I stood up. Down he went. Small enough this time. Small enough to scurry away and wait for the next time I lay down. 

I’m just a girl – Diagnosing part 4 (Ehlers-Danlos Syndrome)

.Reading time 8 minutes.

I’ve always been bendy. It’s a talent that helped me stand out in dance classes and yoga. As a kid, it also made for a great party trick and an easy way to impress my friends. Can anyone fit in that box? Me! Who can reach the toy behind the sofa? Me! Can anyone match the teacher’s plié and splits? Me! 

Stretching also felt great and I found myself eager to spend time moving and testing the boundaries of my body’s flexibility. Sports that relied on balance and fluidity were ideal formats for both showing off and feeling powerful. I have always had good body control, so falls and injuries were infrequent. Overall, my bendiness was a benefit and didn’t seem to create any obstacles to my physically active life. 

As a young teenager, I was the captain of a canoeing team. It was one of my favorite pastimes. All of our practices and competitions took place in the ocean. Every excursion was a major workout and used full-body motions. One day, in the middle of practice, on the downswing of a rowing motion, my right shoulder popped out of the joint. I felt a searing burn throughout my entire arm and collapsed on the bottom of the boat. We were about an hour from shore. Pretty quickly, we figured out why my arm was not moving and that the pain was radiating from my shoulder. I pushed my shoulder into the side of the boat and managed to get the joint back in the socket. Using a piece of cloth, we made a sling and finally got to shore. It was my first dislocation. 

There was no hospital visit. A family friend who had a medical background told us to keep the arm in a sling and that it was fine to use as soon as it felt a bit better. That was it. There was no information or indication that an easy dislocation at a young age was a sign of future problems. That one injury has plagued me throughout my life. It prevented me from playing sports. The joint would occasionally dislocate on it’s own. Frequent sharp and achy pains ran from my scapula up through the joint and into my neck. 

Occasionally, subluxations in my knees and hips would happen. I didn’t know exactly what was going on, but I knew it felt similar to my shoulder and that I had to stop whatever I was doing. I would try to relax and lay down to let everything settle. Eventually, I went to a small town orthopedist for my shoulder pain. He injected my shoulder joint full of iodine (which is one way I found out that I was allergic to that lovely mineral). After a few images, the doctor told me that I had “big joints” and that I should do exercises to strengthen my shoulder muscles. So I did. I focused my workouts and constantly used my “loose” shoulder to try and tighten it. 

Unsurprisingly, that led to more pain and frustration. I felt like a whiner when I couldn’t go out surfing or run hills. People around me thought I was exaggerating and finding excuses for not participating, all because the agony was invisible. They couldn’t see how or why I was suffering. After all, I was healthy, fit, and flexible.

It took 20 years to get an official Ehlers Danlos Syndrome diagnosis. Over the years, a few doctors would call me hypermobile. I was sent to a geneticist once who said that, while I met many of the standards, my hamstrings weren’t flexible enough to be diagnosed. That was just one of many mind-blowing misdiagnosis moments. Finally, a neurologist noticed my skin elasticity, softness, and scarring. He asked me to do some mobility tests. He looked at my skin biopsy results from other tests and quickly told me that I had either Classical or Classical-like EDS.

There are currently 13 types of EDS. Classical/Classical-like EDS are also known as the hypermobility types. It is the most common and least medically dangerous type of Ehlers Danlos Syndrome. As most of you know, rare and under-diagnosed conditions require sleuthing and constant awareness from the sufferers. We have to pressure, prod, and protest our way through the medical journey. I likely would have spent my entire life thinking that my EDS symptoms were just a self-inflicted exaggeration of a normal body. I would have thought that my scars were just bad skin or that my dislocations and joint weakness were due to my ineptitude. 

Now that I know what my condition is, I have discovered how much EDS impacts my health and daily life. My dentist has it on record and uses that to help with my dental hygiene. Any physical therapy or alternative treatments are careful to not exasperate my EDS. Dermatologists keep the collagen aspect of the condition in mind. Using high-quality daily items such as mattresses, shoes, purses, and utensils all factor into living with EDS. Learning about braces, wraps, and skin care all matter greatly. 

If you are hypermobile and experiencing any pain or dislocations, take some time to research Ehlers Danlos Syndrome. Thankfully, there are now many more resources and medical awareness of the condition is growing. I know it’s fun to be bendy. I still enjoy stretching and pushing my body, but now I don’t go too far. I work on strengthening my tendons and muscles that support the joints. As we age, EDS seems to show its negatives a bit more. The pain and moments of “I can’t do that” become more aggressive. Joints get slipperier and the fragility of movements can dominate your thinking. Support (emotional and physical) is key. Let your community know that you are experiencing real symptoms. Ask for help when you need it. Demand that your doctors take you seriously. Leave room for self-forgiveness and frustrating moments. I hate to say that the medical legwork all falls on your sore shoulders, but it does. I’ll be here to commiserate in your pain and celebrate your successes. 

The day after

.Reading time 6 minutes.

Two of my least favorite things to hear from doctors and non-sufferers is, “Pain is all in the head” and “Mind over matter”. There are strong truths in both statements. Modern science has proven that pain is an interpretation by the brain. It does not originate where we feel it. Science has also shown that thoughts, meditation, and prayer can alter and even negate physiological maladies. But here’s the catch, those truths do not make current pain and symptom sufferers feel better. 

Friday was my day after. I consider the day after a massive recovery day. It’s a day that I know will follow after activities. Sometimes that day turns into two or three days. On recovery days, everything is ratcheted up to a ten. Pain, frustration, flares, fatigue, and brain fog are all at their highest level of intensity at the same time. Being aware of the day after isn’t the same as expecting a painful result from an action. Instead, it lives in the simple knowledge of reality.

I had spent the day before doing a few major activities outside of my normal routine. Meal prepping a number of items, spending time with rambunctious children, and hanging out with a physically active friend all on the same day. It sounds like an average to boring day for most, but for the busted body it was a lot. As I walked on the beach with my friend and then sat down to listen to music, I could feel tomorrow start. 

Even with medications and preventative measures taken, I felt the pain meter creeping up. Using my usual method of ignore and push through, I was able to make it through the full day and evening without being punched to the ground by my symptoms. We all know the move, just keep going because once you stop moving/thinking/socializing… the truck runs you over. I got home and took a shower before crawling into bed around 2am. Taking a shower before you stop. That’s another one of those tricks you learn while navigating a life of symptom management. 

The day after started around 3am. You are so completely exhausted, yet sleep is elusive. Pain is always the king of a broken body. It reigns supreme over all needs and other symptoms. Fatigue and pain love each other. They move hand in hand to pull new symptoms to the surface and stuff “normal” physiology down far beyond where it could overpower flares. 

Lying in bed, every breath was labored and every toss and turn felt like swimming through burning mud. Four hours later, I was done negotiating with myself to start my day. Getting up to use the bathroom, I had to choose between crawling on the floor or stepping on the clamp full of nails that had taken over my legs and feet. I picked walking. Crawling put pressure on more joints and too many extra moves were required. I brushed my teeth while sitting on the toilet. It was the only way to manage that task without collapsing. 

After a huge sigh and motivational conversation in the mirror, I made it over to the couch. No phone. No computer. No television. No music. Just a different place to lay my body down. I took a short nap, waking every few moments to the sharp and incessant knives working their way across each nerve and muscle fiber. Then came the big question, if I don’t move will I be stuck here for the rest of the day? The answer is almost always, yes. Moving now will put you on the path to easier movement later. So that is what I did. 

I spent the entire day in my pain. Watching my symptoms as they flared and threw tantrums was enlightening. Was I disassociating? Probably, it is a coping mechanism. I am so very tired of being frustrated and angered by my own body. I would switch between thinking: I can be one of those mind-over-matter people! I’m not trying hard enough to push through! Then: Your pain is real! Your symptoms are true manifestations of your body’s condition and you are doing the best that you can!

It took three days to get back to my normal. Each day wasn’t easier. They were just different. We need to remember that chronic pain and illnesses are dynamic. They are often the most mysterious and understudied because of their variability. As our daily symptoms shift, so to do our responses to formerly difficult or easy events. Add to that, a person’s constantly changing mental health and the appearance of a life in chaos is revealed. But, for the millionth time, chaos is our sweet spot. We are the ones who can create order and comfort in whirlwind conditions. The day after is one moment. Sometimes it’s a long moment. But, today I recognize that I am not in my pain. It is my ever-challenging companion, not my entire existence.  

Care in the upside down

.Reading time 5 minutes.

When the world seems to be in utter chaos, how do we get the care that we need? Well, our planet has never been perfect and our lives have never been “normal”. We have always been outside the model of average and strapped in for a turbulent ride. Now that lights shinning on general themes of inequality and vulnerability are burning brighter, those of us with chronic medical ailments have to balance empathy and anger with self-preservation and global caretaking. 

It is a lot to ask. Simply trying to survive a worldwide pandemic was a heavy enough weight to bring some of us to our breaking points. Adding the outrage of systemic injustices and decimated global economies to that… life feels more unstable than ever before. Currently, there is no clear end in site. Everything won’t magically correct itself. When we wake up tomorrow, everyone won’t be happy and on a path to a harmonious and prosperous life. Reality is really really shitty sometimes. We know that. We experience the pain of existence every single day. But that doesn’t mean it’s hopeless. Everything could actually be moving in a more positive direction. We just have to hold on and help steer the ship.

Taking control when and where you can is the best way to keep yourself from spinning out. This can be not only hard but also confusing when it comes to both self-care and whole-care. When medical resources are stretched thin and needing help feels like more of a burden than usual, reaching out is a challenge. It’s a challenge we have to overcome. 

I’ve written previously about all the preparation chronically ill folks do. How we are very well suited to hunker down and stretch our resources even when that means we will be in pain or have dangerous symptoms. However, we can’t step back forever. Our needs and survival are just as important as everyone else’s. An even wilder thought… your comfort and happiness are just as important as everyone else’s. Right now, it feels like a a micro-break from the world turning upside down. It’s time to breathe and take a personal inventory of all the things you’ve let slip and simmer in the background.

Medical professionals are seeing non-critical patients. Telehealth appointments are easier to schedule. Grocery stores have figured out inventory and more are offering delivery or pick-up services. Emergency departments are no longer overwhelmed. Virtual mental health and alternative therapy services are often low cost and flexible. Medications and important health products are readily available. We have the chance to bring parts of ourselves back to a functional status.

Of course, things are still different and that can shake up important routines and trigger flare-ups. Some of us have to find second or third tier options for care. We have to create backups for our backups. Most importantly, we need to reach out and be vocal about what is NOT working. As we have discovered, everything can shut down or change in a split second. Taking the opportunity to readjust and find new methods for making it through tough times is incredibly important.

In order to take advantage of this clear window in the global sharknado that is 2020, it’s important to keep timing in mind. Protests can dramatically affect your ability to get to a hospital or doctor’s appointment. An avalanche of newly sick people can strip pharmacies and stores of your daily medical necessities. Economic turmoil and countrywide shutdowns can leave you without human contact and help. We don’t need to be scared of this reality. We’ve been given a chance to see where our individual and societal weaknesses are and now we can shore up everything that has been crumbling these last few months. 

The chronically ill and chronic pain communities are incredibly strong. People are generally good and kind. It’s time to be loud about our needs. We can do this without stepping on the stories or progress of our peers. It takes awareness and conscientious actions, but it isn’t impossible. Taking care of what you need now will allow you to be a better neighbor and ally to those who need your help in the future. 

Crushed by assumptions

.Reading time 5 minutes.

People with bent and broken bodies are often presumed to be weak. We are thought to have the same mental and emotional deficits that our external selves display. This becomes even more complicated with invisible disabilities. Looking healthy but having physical challenges means that people assume laziness and lies on top of the incorrect belief that we are broken all the way through. 

While the world reels from Covid-19, we’ve seen a number of arguments pop up explaining why visibly disabled people will be treated less effectively. They will be seen as already damaged. Their quality of life is assumed to be poor. They will be classified as less important to society. Their bodies will be deemed too broken to waste medical resources on during times of scarcity. Even though they claim that it is a tough decision, the arguments state that it is the right one. That humans with busted bodies are not equal and should be placed lower on the scale of medical worthiness. I can’t believe that I have to say this… that is the wrong opinion. People with illness are just as deserving of quality medical care as any one. 

It is a reiteration that we are viewed as other. Largely invisible and always held up as an example of the worst way a life could be lived. I’ve admitted before, this is one of the reasons I hesitate to get and use mobility devices. It is vain and puts me in a position of privilege that I can still make that choice. Watching friends in chairs or with obvious disorders navigate this hyper-judgmental time is crushing. I get to sneak in under the radar. The public can’t see my broken pieces. I am able to avoid the “oh you’re going to die now” stares of fear and pity that my peers get every day. But that might be changing.

Those of us who have worn our invisible diseases under our “normal” facades are likely going to find large cracks in the veneer now that we all live in a coronavirus world. Let me explain. 

Many of the screenable Covid-19 symptoms are real symptoms for chronic medical conditions. As countries begin to reopen, many places are considering or already implementing screening procedures. Entering stores, buildings, and airports might require a fever check. If you have a cough or shortness of breath you may be banned from public spaces. Rashes and hives will be thought to only be a mark of the infected. A headache, nausea, and muscle pain are all red flags for non-entry and even quarantine. I check all of those boxes. Often daily. 

Small fiber autonomic neuropathy affects my ability to control my body temperature and leads to frequent fevers. Rashes and hives fall under my mast cell disorder. A cough and shortness of breath happen because of a lung tumor, exercise induced asthma, and neuropathy. Headaches… I mean… chronic daily migraines wins that one. Nausea from gastroparesis and body pain from literally everything. Lucky me, I’ve got it all!

If they start checking for these symptoms before allowing entry to pharmacies, stores, restaurants, and every public place, people like myself will be sectioned off from the world. We will be more isolated and have less access to our surroundings than ever before. We will be branded and pushed away from everyone even though we are NOT sick with a contagious disease. I fear the same thing about any sort of antibody testing and a “virus-free” passport/tracking system. 

Science, especially medical science, is perpetually inaccurate. It is a field of constant learning and trial and error. There will be so many wrong turns before they figure out how to accurately pinpoint who has the virus, exactly how it is transmitted, and how it can be treated. I know that we are all doing the best we can to keep each other safe and healthy, but using a broad brush to paint anyone who has a symptom as sick with “the virus” is not only dishonest, it is dangerous. 

Bedknobs

.Reading time 5 minutes.

I don’t currently live with anyone. Over the years I’ve lived alone and shared a home with roommates, friends, partners, and family. There are many positives about having a space to yourself. I think we can all understand the pleasures of finding out that your bustling or shared household is yours alone for a single day. Turning that momentary bliss into an extended reality is pretty great. Of course, there are negatives as well. Cohabitating brings love, interest, joy, and drama to even the quietest home and individualistic person. One of the most glaring issues of living alone as a busted-body adult is making the bed. 

That’s right! It’s not a glamorous or divisive topic. It is incredibly boring and tedious, but the truth is… making my bed is one of the most difficult things that I have to do. 

My bed is fairly small. I picked it for a number of reasons. I move homes A LOT. Frequent transitions mean that I need to be able to fit all my stuff into one vehicle or container easily. Depending on where I’m going, sometimes I need to store my things. So, the more condensed the better. For a while I relied on a futon, but that became ridiculous and a headache to transport. When I decided to buy an actual bed, I knew that I would be moving into a warehouse-type space. There was a small nook that perfectly fit a long single size bed. I’m tall and single so, bingo. It worked perfectly while I was there.

Luckily, in my current bedroom, my small bed is also an ideal fit. Anything larger and I would constantly be maneuvering around it. I also chose a simple mattress stand and no headboard. Again, easy to move from place to place. Plus, I happen to be a sleepwalker/active sleeper so the closer I am to the floor the better. I know this is all very sexy and alluring information.

The daily bed fixing isn’t very problematic because if I’m worn out I can simply toss the sheets and blankets over each other with little effort. The hard part, the really frustratingly painful part, happens when I change or wash my bedding. I’m a wash the sheets weekly kind of girl. It’s an important part of my hygiene routine. Am I physically capable of doing this task every 7 days? No. I don’t like it, but sometimes the week has to stretch into two for me to be able to handle the specific actions. 

Removing blankets and sheets requires hand dexterity and strength. There is a lot of standing, reaching, bending, and walking around. I’m very fortunate to have a washer and dryer unit in my space so throwing everything in the laundry is the chill part. It is also the time when I sit down and try to psyche myself up for the next event in the marathon that is making the bed. Putting bedding back on a mattress includes all of the above steps plus pulling, tugging, tucking, shoving, and folding. I mean… billowing sheets?! Fluffy pillows?! Weighted blankets?! Nothing is an easy fit or takes a simple flick of the wrist. 

Making myself a comfortable safe space to spend nights and the roughest days is important. I’ve slept on floors, couches, and roll away mats. My body can’t do that anymore. I can’t just toss a sheet on my mattress and call it a day. I’ve tried. Instead, I’ll wrestle with the pillowcases and use yoga moves to lay down the nightmare that is a fitted sheet. I’ll pay too much for sheets that are soft and a perfectly sized blanket. Sometimes we need to complain about the things able-bodied people barely think about. Highlighting our weird and surprising plights is part of the reason I write. 

I hope you’re as healthy as possible reading this silly rant about bedding. Stay safe.

Risk verses reward

.Reading time 5 minutes.

Lately, #HighRiskCovid19 has been trending. It’s a small but effective way for those at high-risk of contracting Coronavirus to been seen as real. By posting a portrait and a quick rundown of their reasons for being vulnerable, social media users might absorb the reality that their world is full of physically compromised and invisibly ill individuals. Maybe if they see us, healthy people will be more aware of the importance of flattening the curve and social distancing. At least that’s the hope. 

It has been interesting to watch the world adjust to our daily battle of…”Is _____ worth it?” The chronically ill ask ourselves variations of this question throughout each day. There is often a hefty dose of internal bargaining and guilt thrown in as we grapple with making choices. If I walk to the kitchen I can get food, but if I stay sitting here I get to feel less pain. Is walking to the kitchen worth it? If I go to the pharmacy I can fill my prescription, but if I wait an extra day I might have more energy and do some shopping. Is going to the pharmacy worth it? 

Most of the dilemmas I am hearing would sound frivolous to the typical chronic sufferer. They revolve around stockpiling groceries, attending events, and taking trips. But the actions and consequences of these seemingly easy life choices have morphed into a level of risk verses reward that many people have not experienced. (When I say many, I’m speaking broadly of healthy, non-elderly, middle/high-income bracket individuals). Now, those people have to consider that their decisions have an element of life or death attached. It has put them into a state of unpreparedness, fear, and confusion that they don’t know how to handle.

Even if someone is in the lowest possible risk category, they can be a carrier, often asymptomatically, and pass the virus to strangers, friends, and loved ones. There is also a possibility that they could get sick and succumb to the terrible difficulties caused by Covid-19. If a person has empathy and a basic understanding of germs, I can’t imagine they would want to cause harm through a selfish decision. It’s a new pressure and level of societal navigation that they haven’t grasped. That means that we (the chronically ill, underrepresented, misunderstood, and ignored members of society) have to deepen our well of patience and understanding for their new reality. And yes, we have to do it while doubling down on protecting our bent bodies and overloaded minds.

I know it’s a lot to ask. Here’s the thing, when the sky is falling and the world seems to be in utter chaos, it is the ones who spent their lives surviving minute to minute and day to day who have to show those who haven’t struggled how to dry their eyes and move forward. We are the calm in this storm. So be a bit gentler with your naïve family members. Talk to friends with honesty and afford them sympathy about staying home and missing out on their “normal” lives. Take a deep breath pun intended when listening to politicians and seeing false information spreading. Smile through your windows at a neighbor. 

Most importantly, take care of you! Laugh between crying about the panic buying and material hording that places us all in danger. Use fancy lotion after scrubbing your hands raw with soap multiple times a day. Lean on your support system to run errands and help you out with your responsibilities. Remember how awesome it feels to not have to leave your home for a few days. And if you think that you have no one or that you can’t stop engaging with the outside world or if obligations fall heavy on your shoulders, know that you do have a community of people who understand and who honestly care how you make it through this time.

Virus light

.Reading time 4 minutes.

I get sick a lot. Most of the time it is a simple cold. Occasionally, my body turns sniffles or a cough into bronchitis, strep throat, pneumonia, or some weird iteration of the flu. My immune system is compromised for an unknown reason. Like many people with chronic diseases, my body is angry and permanently fighting. Inflammation runs wild, allergy markers live at high levels, and constant new symptoms emerge. I’m at a high-risk for contagious diseases.

Because of this, and my underlying conditions, I have a cautious life. Not by choice, of course, but by necessity. Since fevers pop up often and shortness of breath is a regular occurrence, thin skin is easy to cut and joints are slippy, vomiting and fainting accompany daily dizziness and migraines, rashes rub skin raw and pain permeates each fiber of my being… my life requires careful navigation. This is especially true during flu season or when something new, like the Coronavirus, jumps from locally possible to probable. 

The chronically ill are masters at preparation. We have to be. We don’t have the luxury of casual sanitation or haphazard medical supplies. Our pantries are always reasonably stocked with dry goods because we don’t know when we will have the capacity to go grocery shopping. Refilling medications and supplements can’t be last minute ideas. We stash hard to get items that help us feel better and always have a backup plan for getting to our critical appointments. We spend too much time thinking about our supplies, medication refill schedule, and excursions into public spaces. Our purses, vehicles, and bags are loaded with “just in case” pills and “what if I can’t make it home” necessities. 

With all that said, I’m a firm believer in avoiding panic. I don’t think it is a productive or useful way of operating in the world. Being prepared is different than living in fear, chaotic hording, or being a prepper. Having an awareness of your surroundings and taking extra steps to avoid aggressive germs is common sense. 

Unfortunately, for those of us with invisible illnesses, the stares and comments get bolder during times of global infections or pandemics. We don’t look sick or vulnerable. Many of us are too young to be visually categorized as at risk. Most of us would pass as healthy moving through a crowd. But I see you.

If you wear a mask or gloves, it’s because you need them. It isn’t an overreaction or silly decision. If you’ve taken the steps to get extra medications or stay away from people, that is perfectly fine. You have to do what is right for you and your unique body. It takes a combination of personal autonomy and care for your community to keep everyone as safe as possible. Listen to medical professionals and your own instincts. Wash your hands and cozy up for some self-care. It’s going to be okay.