Emotional destruction

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.

Night times

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. 

The day after

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.  

Crushed by assumptions

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. 

Virus light

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.      

Trickiness of time

Someone recently asked me how long ago my medical issues started. With a blank stare and stuttered excuse, I realized that I couldn’t answer that question accurately. I began to wonder if I was lacking as a proactive patient.

Here’s the thing, I’m not sure that I want to have a perfect schedule and exact history of my diseases. I have approximations, ideas, sporadic notes, and well-intentioned guesses alongside crystal clear bad days and dramatic episodes. There are certainly dates and times logged in hospitals and doctor’s offices. I could spend my time, effort, and money collecting all my medical records. Let’s see, I would need to call, email, probably fax, send snail-mail, and visit miscellaneous providers across the world. Once all of that paperwork is compiled, I would have to go through each file and construct the chronological timeline. I would also have to check for mistakes (as they are frequently found in records) and make allowances for the many visits and doctors I cannot recall. There is also the important and impossible process of remembering when I experienced problems that I did not seek help for and knowing when certain symptoms started before the actual medical interventions.

It’s an exhausting and ridiculous process. I’ve tried my absolute hardest to compile a complete medical record. I have received a number of files and spent time writing a detailed history, to the best of my ability. But I know it’s a fruitless endeavor. There are incorrect memories and wrong dates peppering my history. Important moments slipped from my brain and insignificant ones have ballooned in their place. The thing is, this organizational shortcoming and not knowing exactitudes around my illness’s history isn’t rare or bad.

A combination of survival instincts and emotional coping mechanisms keep us from holding our pain too precisely. Reliving difficult physical experiences through a haze is preferable to clear loud memories of each traumatic event. I’m not even counting the brain fog! Time generally looses its meaning for the chronically ill. Or maybe I should say that the meaning of time changes. When your average day is filled with avoiding triggers and storing up enough energy to get through brushing your teeth, time looks more like day and night. Sometimes, that type of time doesn’t even register if you’re in a terrible flare or hospitalized. At that point, time becomes space: in my house or out of my house. There are many other versions of time depending on what is happening. It’s all very tricky and fluid. 

Unfortunately, the reality of our uncertainty can leave non-sufferers confused and even accusatory. They can’t fathom that our lives are complicated to a point of breaths being more important than days. I get it. When your reality doesn’t match up with someone else’s, a little short-circuiting happens and that person can choose to proceed with empathy or frustration. The latter is often what the invisibly ill hear. We hear it from the media, doctor’s office, social circles, and complete strangers. Of course, there are frauds, attention seekers, and even those with mental disorders who wear chronic diseases like coats to be discarded after the season has passed. But shouldn’t we err on the side of compassion? We, whether it’s someone on the other side of the world or a next-door neighbor, don’t know their struggle. Unless harm is occurring, we all need to be a little gentler with each other’s journey.

I have decided that I am not going to stress out about my timeline. Between being my own medical advocate and digging for the ‘why’ behind my conditions, making it through each day is hard enough. My diseases are mostly invisible and I will always have to defend the way that I am feeling. I can’t carry around my test results and doctor’s notes to prove to people that I am in pain. Nor should I! It started, it went, and it is still going… that’s all they generally need to know. I’m going to keep track of time when I need to or if it makes me feel better. I have to remember not to give myself the extra job of evidencing my medical problems to everyone. I’ll always handle my physical issues in a way that best suits me, not them.

Coming around

It seems fake. I mean, whose legs aren’t restless? Is there anyone who can sit or lay comfortably in one position without needing to shift? Everyone needs to move from time to time. But, it turns out that Restless Leg Syndrome is a just a terrible name for a real disorder. I think it falls under the same name-fail as Chronic Fatigue Syndrome. 

So, RLS is an actual condition and I have it. It started slowly and developed as a branch off of my Autonomic Small Fiber Neuropathy symptoms. I want to discuss what RLS truly feels like. The commercials and medical descriptions don’t do the weirdness and intensity of the disorder justice.  

At first, it was simply an uncomfortable pressure in my legs. I felt the urge to move them when I was falling asleep. It was manageable and I didn’t mind shuffling around a lot at night. The feeling gradually intensified and it went from uncomfortable to maddening. The urge to move was no longer soothed by kicking around my legs. The feeling had spread into my pelvis and walking was the only thing that calmed it. As the sensation grew stronger, it stopped feeling like an urge and began to mimic a deep ache. It could best be described as an internal itch that can’t be scratched. You know that frustrating feeling of having a deep inner ear itch or a piece of popcorn stuck in your teeth? That aggravation of a splinter in your finger or bug bite on your toe? It’s an incredibly pressing need for relief in a spot you absolutely cannot reach. It would often stop me from falling asleep and always aggravated my other physical issues. 

I have insomnia and, as you can imagine, RLS makes it way worse. I went to a sleep specialist and tried to explain what I was experiencing and how it differed from my average daily pain. The doctor immediately said that I was describing Restless Leg Syndrome. I was glad to hear that I wasn’t having some bizarre psychotic break, but another unfixable medical problem on my already long list left me feeling defeated.

The name sounded stupid and the only treatments were high-dose iron and SSRIs. I can’t take iron supplements and the class of drugs used for this condition don’t work for me. So, I geared up and did my usual due diligence. A dive through medical journals and the Internet took me on a roundabout journey. As it turns out, all the reliable resources said the same thing: upping iron intake, being lightly active, and orgasms. Uhhh, orgasms? As a treatment? As a doctor recommended treatment? 

Being desperate for relief, I was willing to try any unusual methods. I mean if scientific trial demands sacrifice, I’m up for the job. After giving it a go, I found out that… orgasms work! I know! Massive surprise! As it turns out, the dopamine and serotonin flood that comes along with, um, coming, acts as a scratch for that internal itch. Now, it isn’t a cure (wouldn’t it be cool if it was). There are many times where achieving that natural chemical cocktail is simply not possible or practical. Thankfully, my current autonomic neuropathy medications help calm the average misfiring nerves associated with RLS. However, when the medication isn’t effective or my legs are literally twitching and jumping from RLS, I have found that an orgasm is the absolute best temporary salve to quiet the madness.  

Like most disorders, RLS ramps up at night. In the beginning, I only experienced the feeling before falling asleep. Currently, it is at the point where I can get uncomfortable anytime my body is at rest. And yes, if I’m not at rest I’m in more pain from my other broken body issues. It’s one of the many double-edged sword aspects of having chronic disorders. However, finding out that I have the ability to soothe a major physical problem provides me with a bit of control and peace. That small amount of authority and knowledge helps my mental health. I have a cost-free, side effect-free, effective therapy available whenever I need it. Who would have thought it, orgasms are pretty great.

Slogging through hygiene

It’s the more unspoken part of dealing with chronic illness. If being able to get out of bed or going to a doctor’s appointment is a big win, taking care of your daily hygiene needs makes up all the tiny victories in between. It seems so simple. Just take a few minutes to clean yourself and your surroundings. All you need to do is brush your teeth, shower, shave, wash your hair, moisturize, trim your nails, change your clothes, etc.

But, simplicity rarely exists in our realities. Surviving the microseconds is where we live. When everything hurts, maintaining the squishy bag of fragile skin, holey bits, and perfectly balanced bacteria can be exhausting. Human bodies are a lot of work. They require absurd amounts of attention and finessing in order to not fall apart. 

Besides the compounded amount of time it takes us to complete a hygiene task, many chronic conditions change the process into a possible dramatic event.

Bruising, dislocating, breaking, scarring, and twisting are possible side effects of showering. Once you’ve worked up the energy to get into the shower, you have to find the strength to apply enough pressure to your hair and body to cleanse it. Your hands have to hold bars of soap and tubs of shampoo. You need to wring out washcloths and raise your arms. 

Dizziness and fainting are possible side effects of standing for more than a few minutes at a time. Stabbing pain, electric shocks, numbness, unfelt injuries, inability to stand or hold anything are more accompaniments to keeping ourselves clean. 

Hives, rashes, itching, raw and swollen skin can all be aggravated. Accidental exposure to allergens also occurs. Migraines can be a possible side effect of any activity or undiscovered trigger. Oh, don’t forget about nausea and vomiting from moving around or a drop in blood pressure.

Keeping dental, vision, and auditory health as priorities in our hygiene routines is extra important. Most of our conditions have some affect on those three areas. For example, people with connective tissue disorders, have a higher probability of gum disease and deterioration. Migraine sufferers can have tinnitus and auditory hallucinations that need checking. Autonomic issues include vision problems that should be monitored.

Many of us avoid or skip taking care of our entire bodies because we already suffer with so much that we can’t imagine taking on more pain, testing, and possible bad news. We also don’t want to be berated for our unconventional routines. In many countries, including America, medical care for eyes, teeth, and ears is also ridiculously expensive. There are ways around the costs. If you can get the courage and physical capacity together, there are cheap/free ways to visit the specialists. Unsurprisingly, the research and follow-up for practical healthcare falls on you.

Pain and fatigue are the most noticeable results of taking on hygiene hurdles. Halfway through a shower or change of clothing, you can be so depleted that you just stop. Maybe you crinkle down to the ground and lay on that cold surface with one pant leg on and the sleeves of a sweatshirt wrapped around your shivering body. Perhaps you sit on the floor of the shower, weakly reaching to turn the heat up a notch as you take deep breaths and rest your heavy head on your knees. You thought you could make it. You really tried, but now wasn’t the time. Later will be better and if not later, tomorrow. There’s always tomorrow if we make it through today.  

We know how much our mental health is tied to our surroundings. A cluttered room equals a cluttered mind, and whatnot. The same is absolutely true for our bodies. On my worst days, I brush my teeth. I do it lying in bed and over the course of ten minutes, but I do it. It is something that I take control of when my body is dictating everything else. When I can take a shower and change into fresh clothes, my mindset always shifts to a more positive place. For that small task, I did it! I accomplished “normal” and “healthy”. It pushes me and reminds me that my body can be good too.

You are doing the best you can. I hope today is the day you get to feel uplifted by those minutes you pushed through the agony and took gentle care of yourself.

Achoo!

Dealing with chronic disease forces you to expect the unexpected. New symptoms and weird manifestations of the disorders pop up all the time. Occasionally, a non-related medical issue will present and you have to figure out if it is truly a new symptom or a manifestation stemming from a previous condition. As you know, all those aches and pains that encapsulate chronic diseases show up in wildly diverse ways. 

One of my daily symptoms is nausea. It can be severe or mild, but it is always there. Because of this, when I’m coming down with the flu or even food poisoning, I have to rely on other indicators to figure out if I am sick. Does my body hurt in a different way? Which body parts are inflamed? Are my typical treatment methods unhelpful? Is this causing an unusual mental and emotional reaction? What is my instinct saying?

If it is a temporary symptom or illness, great! That means there is one less medical drama for you to worry about. Unfortunately, even short-term symptoms can trigger dormant issues. Once nerves are stimulated and pathways between the brain and the physical symptom are laid, you might face new permanent triggers and pains. 

A month ago, I broke my toe. I have broken this particular toe once before. Having EDS, alongside numbness from neuropathy, makes my extremities easy game for injuries. While I knew that this pain was different than my usual pain, my brain still sent out signals to the rest of my nervous system that it was under attack. Everything flared. Eventually, the acute pain of a broken bone and bruised tissue went away. But, now I have a new stabbing pain that happens in that toe. I already had burning, stabbing, and shocking nerve pain in that foot. There shouldn’t be room for new nerve pain. However, my brain is really great at forging those pathways. So, a new symptom (in this case pain) is the result of a temporary medical problem.

We are a group of people who are hyper-aware of our bodies. In fact, if you have taken the time to really dive deep into your ailments, you probably know your body better than most. We learn which twinges and pains are a part of our daily lives. New symptoms, especially dramatic ones, can throw a wrench in the fragile balance we practice. I’ve found that using an intensive mitigation program to slow and stop new symptoms works best. 

If I feel a sore throat or runny nose coming on, I immediately go into cocoon mode. Lots of fluids, anti-inflammatory foods, rest, and any proven supplement alongside a low-stress environment helps me heal. My body will fight and recover, but my brain is the part I’m really trying to soothe. I don’t want it to go into alert mode. It’s almost like singing the brain a lullaby, “Hush now. Everything is fine. Rest now”.

We can’t stop new symptoms. Catching common colds in inevitable (especially if you have a weakened immune system). Bodies are weird and you’ll end up with an eye twitch that lasts for a week, a cramp in your abdominal, or sciatic pain out of nowhere. There is no avoiding this. It simply comes down to managing these symptoms and harnessing all that amazing self-awareness to keep your chronic conditions in check while you move through the temporary.

Opioids and Judgy McJudgerson

Take a deep breath. This is going to be one of the most polarizing issues that we discuss here. It’s also going to be a long post. However, no matter how long the column is it won’t be long or detailed enough. Pain and pain management is a very complicated discussion. It is intensely personal and biased, even when science is discussed.  

My position is different from most people. The way I think about pain has changed over time. It can probably be split into three categories: before illness, start of illness, and chronic sufferer. 

BEFORE: I was anti-pain medication. From over the counter analgesics to intravenous medicines, I could not fathom the reason for pain management. Of course, I believed in acute relief. There are terrible things that happen to the human body which call for interventions. Beyond that, I had no experience with chronic, abstract, or intractable pain. 

START: Give me any and all medications that will provide a momentary respite from my intense suffering. I couldn’t articulate the level of pain I was feeling. There was no guideline or numerical scale that accurately described my agony. Doctors couldn’t see my pain. Therefore, they didn’t understand (and sometime didn’t believe) my pain.

At first they were liberal with pain medicine. Oxycodone pills, morphine drips, and fentanyl patches were used as stopgap treatments. Every intense pain and subsequent trip to the doctor or hospital resulted in less interest of my condition and less pain medications. I learned about rebound pain and opioid tolerance. As doctors began assuming my pain was psychological, and not their problem to treat, I was handed more materials about anxiety than tools for pain relief.

Throughout the first years, I just took what the doctors said as law. I thought that they knew best. But they didn’t. Their directions and pills were not working. I began experimenting with my medications. Changing dosages, doing research about their chemical compositions, reading medical reports about addiction, and diving deep into journals to find out why so many opioid and other pain medications were not stopping my pain. I checked up on the mind-body connection and alternative therapies. I read everything.

Because of that research and experimentation, I gained a new feeling of authority over my health. Doctors became a part of the equation. They were no longer the answer. I weaned myself off most of my medications and added some of them back slowly, at the lowest dosages that still made a difference in how I felt. Still, couldn’t figure out why my pain was out of control. I needed too many and too much medicine to feel any relief.

CHRONIC: It took five years before I found a way to control my pain at home. When I say “control”, I mean it broadly. My pain still strikes everyday. It still puts me on the floor and leaves me sobbing. Eventually, I found a doctor at a pain management clinic who listened to my woes. He understood my distaste for medications and wasn’t enthusiastic about prescription opioids. But, he wasn’t an all or nothing prescriber. A good doctor is a diamond in a field of glitter.

It took some time, but I found that Tramadol was the best pain reliever for my body pain. While it never helped my headaches, it made my days more bearable. It took the sharpness out of many electric shocks, strength out of the clamps surrounding my body, and weight off my tender joints and skin. The body pain wasn’t gone, it was just quieter for longer.

Even with that relief, I was still ending up in the hospital multiple times a month for migraines. I had finally learned the intravenous drug combination that proved most effective. For me, it was a combination of anti-nausea meds, Benadryl, and Dilaudid. No other combination or medications seemed to have the effect of actually stopping my head from exploding. Yes, I’ve tried everything you could think of both in and out of the hospital. Even things that shouldn’t be tried. 

Having found a small amount of relief from body pain with low dose Tramadol, I wondered if there was any way to find an at-home migraine stopper that I hadn’t tried. I went back and retried a few things over again: over the counter pain killers, antidepressants, antipsychotics, migraine aborting pills, fibromyalgia meds, antihistamines, morphine and oxycodone pills, a electric stimulator for the forehead, high-flow oxygen, a bunch of different herbs, acupuncture, tapping, meditating, and hitting my head really really hard with my hand until it hurt more on the outside than the inside. They didn’t work, again.

I explained to my primary care doctor that I was desperate not to go to the hospital for my migraines. Each time I went, I was vomiting, often unable to speak, hyperventilating, and in increased agony because of the hospital environment. The doctors treated me like a drug addict and it took hours to get my relief. He offered to prescribe me a pill form of Dilaudid. I was weary. No other opioids had helped. On the crest of my next attack, I took my typical anti-nausea medications and added a tiny milligram of the opioid. Nothing happened and I threw up the pills. I ended up increasing the amount of Dilaudid. It still wasn’t much and I knew that it had to make it into my system in order to be effective. So I took it before my next migraine got out of control. This time, I fell asleep. 

Anyone with pain knows, sleep is the ultimate painkiller. Truly, no medication is equivalent to sleeping. Most of us take a pain reliever so we can sleep because sleep is the only magic pill. On a side note, being woken from sleep with pain is extra shitty because you can’t rely on the bliss and magic of zzzzzs. So, that one opioid, out of all the medications, worked for me. It put me to sleep so that my body could stop the attack. Unfortunately, it didn’t prevent migraines. The frequency continued and I couldn’t take those pills every day. They would stop being effective but I was desperate to have a weapon on hand to put me in healing mode.

Then came the “experimental” procedure. It wasn’t a new drug or heavy dose opioid. It was called a Bilateral Sphenopalatine Ganglia Block and the drug was simple lidocaine. Lidocaine is a local anesthetic. It numbs a specific area for a short amount of time; most people have it at the dental office or applied topically for skin procedures. There can be minimal side effects but tolerance and addiction are very uncommon. Having Ehlers-Danlos Syndrome can decreases the efficacy of lidocaine. I knew from past surgeries that, yes indeed, my body did not numb easily. It was important that I shared this information with my doctor so he could adjust the medication dosage. It isn’t a difficult procedure, but it is uncomfortable. Lying on your back, hollow tubes are stuck up both nostrils. Over the course of 15-20 minutes, a solution of mostly lidocaine is slowly dripped down the tubes to coat the sphenopalitine ganglion. After an hour, it’s all over and you head home. There isn’t any recovery time except for a bit of an upset stomach and not exerting yourself for 24 hours.

Some doctors use less invasive methods with a simple nasal spray. I have found that the full tube directed drip is the most effective. I get four treatments over the course of a month and need to repeat the procedure every 8-13 months depending on my migraine uptick. The reason for the procedure is to numb that over stimulated collection of nerves in order to interrupt pain signals the brain is interpreting. So far, this has been a life altering treatment. It doesn’t change the intensity of my migraines but it has lowered the frequency. Even though it’s a small change (about 10% less) it makes a huge difference in my life. While I still get headaches everyday and have to take precautions not to trigger terrible migraines, the slightly lower frequency means that I’m able to handle attacks with my at home opioid. 

There are still occasions where my pain isn’t managed at home and I need to get intravenous treatment. I am ALWAYS treated like an addict and as though my pain isn’t extreme, Because of this, I won’t seek help for body or skin pain. I only relent to an emergency visit if I can’t stop vomiting or am passing out from a migraine. I use little tricks to alleviate my pain and constantly update my metal file of triggers. I have found a balance of opioid use in my pain management routine. I look forward to the day when I no longer need pharmaceutical interventions. My medical journey is still full of trying new and alternative/experimental/unproven therapies. Until I find peace elsewhere, I won’t be shamed or embarrassed to use every available resource that I need to make my days survivable.

Pain is real.

An obvious note: All of the medications and techniques mentioned are based on my personal experience. They are NOT recommendations. Do NOT take any prescriptions or drugs without medical supervision. Addiction and dramatic side effects, even death, are very real possibilities with any substance. Do NOT ignore cautions and warnings. If you think you are becoming addicted or dependent on an unintended medication, consult a medical professional. Addiction is NOT weakness and there is NO shame in needing help.