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.

What’s the alternative?

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

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)

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. 

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. 

Bedknobs

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.

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.