Straw Ban Bingo Card

I thought that with all the exhausting Straw Ban Discourse, with everything from repeated questions about paper straws to outright eugenics, we might appreciate a bit of levity. So I made the following Straw Ban Bingo Card.

It’s the unending WAVE of the same questions when multiple articles and threads and charts have covered these exact points that is what is so exhausting about The Summer of the Straw Ban. This bingo card is intended for levity and to relieve some of the pressure and fatigue of disabled activists.

If you’re disabled, you may want to skip ahead to the chart. If you’re an abled person reading this and you still have questions about straw bans, or why we need a bingo card, the below is for you:

I would like to note that taken individually, Not All of the responses are necessarily problems. I mean, people can be disabled and care about the environment at the same time. We can care about sea turtles and ocean plastic without banning the thing disabled people need to drink. That’s…kind of the point of why disabled people are mad about straw bans.

On Twitter recently, Alex Haagaard wrote an excellent thread about the ways disabled people are often good for the environment.

Alex has been so compassionate and thoughtful despite the fact that the other day Alex made a thread about how maybe we could ban grass lawns instead of straws, and received a wave of harassment by people who said that Alex hates trees or something. For the record, grass lawns are bad for the environment.

I encourage you to check out the thread and responses, as well as this article by the wonderful Alice Wong that closely matches my own experiences with the Summer of the Straw Ban.

Probably people are going to be upset about the bingo card, especially because I mentioned the turtle. The turtle is suffering! The turtle is not a microaggresion!

But pro tip, if you’re talking about disabled people needing hydration and you link that turtle photo out of the blue, you’re kinda saying the turtle’s life matters more than disabled lives? And subjecting disabled people to gore? And maybe — get this — maybe the turtle’s life and disabled peoples’ lives are both important. Shocker.

With that being said, here is my straw ban bingo card and transcript :

straw_ban_bingo

Transcript of straw ban bingo, from left to right, top to bottom, with an asterisk between each horizontal line on the bingo card:

“whatabout reusable straws”

“but paper straws –“

“but metal straws–“

“silicone straws aren’t expensive”

ignore science on recycled plastic being bad for oceans

*

“who needs straws to drink”

mention your disabled family member

mention your disabled friend

“The Disabled”

mention sea turtles

*

“maybe they just didn’t think about disabled people”

“why can’t you just bring one with you”

FREE SPACE

talk over disabled people explaining CripTax

“but the oceans”

*

“we picked plastic straws to ban because it’s fun and frivolous”

ignore that washing straws is labor

ignore that reusable straws get contaminated

eugenics

ignore corporate waste

*

“I didn’t think of hot beverages”

mention feeding tubes

“I’m tired of talking about straws”

“go seek medical attention if you need a straw to eat soup”

“every little bit of plastic waste counts”

* For a transcript of the above chart, please see : liminalnest.wordpress.com

If you wish to use this chart, please feel free. If possible, give credit, but more importantly please link to this post or my blog (it will be hopefully pinned to the first page once I remember how that works), so that screen reader users can access this chart.  

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What’s a subluxation anyway, and how do I fix it?

One of the notable symptoms of Ehlers Danlos syndrome is “subluxations”, which are defined as “partial dislocations.” In other words, the bone doesn’t completely come out of the joint, but it may slip partly out of position so that it is rubbing “wrong.”

A frequent question among those who are newly diagnosed with EDS or who suspect EDS is “what do subluxations feel like? how do I know I’m having one?” And also, “how do I get the joint back in position?”

For me, subluxations follow the following pattern:

  1. A popping or clicking noise, possibly accompanied by a pulling sensation. This may or may not be immediately painful. If it’s a joint that tends to slip in and out all the time, then it’s frequently lax enough that I don’t feel pain right away.
  2. My surrounding muscles spasm as a last ditch effort to stabilize the joint. However, because the joint is already subluxed they effectively lock the joint in the wrong position.
  3. I experience pain from the muscle spasm and the tension between my muscles and joints.
  4. This lasts until the joint randomly “pops” back into place (often followed by a popping sound). When that happens, I immediately feel relief from my symptoms — unless the joint has not popped back into place properly, and is simply subluxed in a slightly different position.

So how do I treat subluxations? Well, for serious subluxations you may need to seek medical attention from a physical therapist, massage therapist, etc. The same goes doubly for full dislocations.

However, I find that reversing the process by which subluxations happen generally works well.

  1. When I’m experiencing pain from muscle spasm, I first work to loosen the muscles. Sometimes I have had luck using a muscle relaxing medication, but remember those are contraindicated for EDS because they can temporarily increase your rate of subluxations. So I often save that as a last resort, and try things like:
    1. heating pad
    2. foam rollers
    3. TENS unit
    4. epsom salt bath (if tolerated)
    5. magnesium cream
    6. pain cream (such as NSAID cream, if tolerated; lidocaine, if tolerated; CBD cream, if tolerated)
    7. myofascial release and acupressure
  2. Once the surrounding muscles are not “locked” in place anymore, then I can begin to try to gently shift the joint back in the proper position. This is generally a matter of finesse and you may need assistance from another person, but it can involve:
    1. gently pressing on the painful area while opening and closing the joint
    2. squeezing against something (for example in the case of hip subluxations, another EDSer suggested squeezing a ball between your legs, or pressing legs out against a bathtub)
    3. Slowly rotating or bending the joint until it clicks back into place
  3. First aid. Treat as for any sprained joint, because the surrounding muscle tissue will be inflamed due to the recent subluxation. The standard acronym is RICE for rest, ice, compression and elevation. Consider also bracing the joint for awhile after it has subluxed, or use KT tape or an ace bandage if you don’t have a brace for that joint yet.

I hope this is helpful to someone else!

So your hips are hurting (and you are maybe hypermobile)

I have hip pain from bilateral bursitis, a wonky IT band, SI Joint problems and piriformis syndrome. I’ve been dealing with hip pain for oh, almost ten years. It can be excruciating, and interfere with activities like walking and sitting and sleeping.

Here are some of the things I’ve found help with hip pain. I am not a doctor and this is not a substitute for medical advice.

Hip Bursitis and IlioTibial (IT) Band Problems

Bursitis is caused when your bursae (little sacs of fluid in between your joints) get inflamed. As such, things that reduce inflammation tend to help.

Your IT band is a rope-y band of tissue that travels from the outside of your hip to the outside of your knee. It helps stabilize the hip and knee. It also travels over several bursae, and when it becomes tight it can cause or aggravate bursitis.

This website offers a diagram which may help you picture what is going on with your body.

  • rest helps to reduce inflammation after the intial injury; however it is important to begin a gentle exercise program soon after the injury starts to recover.
  • ice pack wrapped in a towel, apply to affected area for 10-15 minutes
  • ice massages (these are excruciating, but help: take a piece of ice and rub it very vigorously and without staying in one place long, directly on the area where it hurts for 30 seconds)
  • IT band stretches, as the IT band goes right over your bursae. Consider consulting a physical therapist.
  • Using a foam roller (see above link for instructions) or a foam massage stick. A foam massage stick may be easier to use if, like me, you have limited mobility.
  • orthotics for your feet (flat feet can cause posture issues which can aggravate bursitis and other hip problems; consider consulting a podiatrist). I use PowerStep Medical Insoles, and they are the most comfortable orthotics I have ever worn. I need to replace them about every six months. I have also had luck with Vionic shoes, many of which come with orthotics.
  • NSAIDs (non-steroidal anti-inflammatory drugs, like ibuprofen) if you can tolerate them. Not recommended for those with MCAS.
  • eating anti-inflammatory foods
  • placing a rolled up hand towel behind your low back when you sit or drive somewhere may help with postural issues that aggravate hip bursitis/IT bands.
  • after your body has recovered from the initial pain of bursitis and some of the inflammation has gone down, you may benefit from addressing structural or postural issues which caused the bursitis and IT band issues. Did you overuse the joint? Use it in a way that is not ergonomically sound? Consider consulting a physical therapist for help with this.

SacroIliac Joint Problems and Piriformis Syndrome

The SacroIliac Joint is where your tailbone and your pelvis come together. It is supposed to be a non-moving joint. However, if you have hypermobility issues, the joint may become unstable. The piriformis muscles are bilateral muscles that travel from the edge of your SI joint across the buttocks to the hip. In cases of instability of the SI joint, they tend to tigthen up in order to stabilize the joint. When the piriformis muscle is tight, it can press on the sciatic nerve and cause pain all down the leg, as well as aggravate restless leg syndrome.

To relieve this pain, it is necessary both to release the tension in the piriformis muscle and build strength in the entire area to take strain off the piriformis. Other methods to stabilize the SI joint may also be helpful.

piriformis-SI

Image showing an anatomical model of the sacrum where it joints to the ilium, the piriformis muscle running from the sacrum to the outer edge of the hip, and the sciatic nerve running under the piriformis muscle.

  • avoid staying in one position for too long. Rotate between standing, sitting, and laying down as you are able.
  • avoid sitting on hard surfaces, such as metal, wood or plastic. Consider purchasing a coccyx pillow if you must sit on a hard surface.
  • Consider using a U- or C- shaped “maternity pillow” to provide additional stabilization to your SI joint while you are sleeping. If you do not wish to invest in a pillow, consider at least sleeping with a small pillow between your knees.
  • Use the topical pain cream of your choice on your piriformis muscle. Examples include icy hot; Ben gay; lidocaine gel/patch; CBD cream; voltaren gel; etc. Just don’t use them all at once!
  • Piriformis stretches may also help.
  • Supine pelvic tilts may help bring some relief to the entire area.
  • Gentle SI joint stretching and strengthening exercises. Consider consulting with a physical therapist; a therapist who specializes in pelvic floor dysfunction may be particularly helpful if you need exercises adapted to your ability level or have complex pelvic problems. You may need to release your piriformis before you begin these exercises.
  • Use a foam roller or foam massage stick on your piriformis muscle, or ask for assistance from someone you trust to use a foam massage stick on your piriformis muscle.
  • Consider using a TENS unit on your piriformis muscle (placing pads on either end of the muscle, being careful to stay away from the spine itself). Do not use a TENS unit if you have a history of epilepsy or seizures, if you have a pacemaker, or if using a TENS unit is otherwise contraindicated.
  • Place a tennis or raquet ball underneath each piriformis muscle. Sit or lay on them for approximately five minutes. It will be excruciating, so stop when you need to. However, it can greatly help relieve piriformis tension.
  • Sit in a warm epsom salt bath.
  • Wear a thermacare wrap (available at most pharmacies; use coupons or buy on sale if you can) on your buttocks underneath your clothes. My friend uses the back sized ones; I prefer to use a “neck and shoulder” thermacare wrap on each buttock.
  • Sit on a small electric blanket turned to a comfortable temperature. I find heat on my SI joint and piriformis greatly enhances my ability to tolerate sitting upright.
  • placing a rolled up hand towel behind your low back when you sit or drive somewhere may help with postural issues that aggravate hip bursitis/IT bands.
  • If you can tolerate kinesiology tape, consider using KT tape to stabilize the SI joint. KT tape is available at sports stores and many pharmacies.
  • Correct postural/ergonomic issues, particularly at workstations or computers where you spend long periods of time. A physical or occupational therapist may be able to help with this.
  • Acupuncture, massage, craniosacral therapy, or dry needling may help relieve pain.

Again, none of this is a substitute for medical advice. There are other causes of pelvic pain than those listed here. Consult a doctor or other medical professional as needed.

The Prosperity Gospel and chasing cures

I used to believe that if I was good enough, my chronic pain would stop.

If I simply tried all the things random strangers recommended, maybe I would feel better. And so my life became a never-ending striving to be the kind of person chronic pain doesn’t happen to: I tried yoga, acupuncture, reiki, drum sound healing, meditation. I ate anti-inflammatory foods, gave up gluten for months, ate probiotics. I shopped at Whole Foods even though I couldn’t afford it.

I subscribed to toxic positivity, and tried to police my thoughts and banish negativity. I tried cognitive behavioral therapy. Mostly, I just felt guilty about still thinking negative things.

Nothing worked to magically banish my pain, because chronic pain is by its very nature… chronic.

As humans, we want to believe that problems have solutions. That there are answers and treatments, even cures, for chronic pain. And maybe there are, but we’re certainly not going to find them without a LOT of research funding.

How to explain the inexpressible suffering of chronic pain? The inevitable counterpart of chasing a cure is self blame. If I just tried harder, found the right foods to blend into a smoothie.

Or maybe, I’ve wondered, I brought this on myself. If fibromyalgia is partly due to trauma… maybe if I hadn’t been raped, maybe then I’d be pain free. I used to think this.

On my worst days, I still do.

Much of this can be traced back to the 19th century Prosperity Gospel, the idea that what happens to us on Earth is somehow an outward expression of our inner morality.

If you’re sick, you must somehow deserve it. If you’re not chronically ill, it must mean you’re a virtuous person.

These. Are. Traps.

It took me years of suffering to realize that I was asking the wrong questions. Instead of “how can I fix myself?”, I needed to be asking, “how can I live my best life with chronic pain?”

My friend with CRPS says, “My life may be the size of a teaspoon, but it’s mine.”

It’s helped. I’m less apologetic for who I am, and more forceful in asking for accommodations.

I’d like to pretend I’ve stopped chasing cures, but the possibility, the hope of relief is something I will probably never give up. Even though it’s exhausting. Even though I’m absolutely sick of medical tests, of trying new meds, of kale.

I’ve had some luck with low dose naltrexone, physical therapy, bracing, and sticking needles in my body (either acupuncture or dry needling). Your mileage will definitely vary.

Where is the balance between acceptance and hope? Where is the line when chasing cures becomes a form of self flagellation? Where can I put down this belief that I am a burden?

I’ve wrestled with this. My novel (currently in revisions) wrestled with what someone would do to rid themselves of chronic pain.

Because I would do a lot. I have done a lot. But the pain is still there, my most constant companion, my forever friend. Til death do us part.

“Fibromyalgia has no cure”: managing Fibro pain and symptoms

So you’ve been to your rheumatologist and they told you that you have fibromyalgia. Maybe it took several doctors to get here. The next thing they probably say is, “Fibromyalgia has no cure, but at least it’s not degenerative.” Then you probably got a lecture on exercise, possibly with a side of fat shaming, and maybe a pamphlet on fibromyalgia.

And now you’re on your own, trying to figure out how to manage your newly diagnosed chronic illness.

It can feel hopeless and intensely frustrating. But “no cure” doesn’t mean there’s no way to manage/lessen fibromyalgia symptoms, although some doctors act like it does.

I’ve had fibromyalgia for over a decade, and I’d like to share some coping skills I wish I had known about when I was first diagnosed. This is not an all inclusive list, but it is a starting point.

I often see articles about “how to treat fibromyalgia” that repeat the same list of remedies over and over. Yet I believe there are more options for managing fibromyalgia symptoms than we are currently talking about, both in and out of the doctor’s office. If some of these seem promising, please discuss them with your medical team to make sure they are the right strategy for your body.

Medications

Lyrica and Cymbalta have both been approved by the FDA to treat fibromyalgia. If you can tolerate the side effects, these medications offer a good place to start.

Neurontin is in the same class of medications as Lyrica, and may offer relief for nerve pain.

Tramadol is an opioid medication, so many may reserve this as a last resort. However, it can help with pain. Other opioids may be right for you, but in the current climate it may be hard to get a doctor who agrees.

Muscle relaxers, such as Flexeril, may offer some relief

Lidocaine comes in prescription patches and also in an over the counter gel and works to block nerve pain signals.

NSAIDs such as ibuprofen or Meloxicam (prescription only) work to reduce inflammation in the body. They come with potentially significant side effects to the liver and gut, so it’s important to work with your doctor even if you’re just taking ibuprofen.

Voltaren Gel is a topical NSAID cream that is available over the counter in certain countries like the United Kingdom (where it is called voltarol). In the US it is prescription-only.

COX-2 inhibitors This class of drugs is currently limited to Celebrex.

Low Dose Naltrexone (LDN) LDN has not been FDA approved to treat fibromyalgia, but small clinical trials have shown it can be effective in treating fibromyalgia pain. Naltrexone is an old and inexpensive medication. However, LDN must be compounded as manufacturers do not make Naltrexone capsules in a low enough dosage.

Lifestyle and home remedies

Heat / ice Many people find heat or ice can help with their pain. This can range from heated blankets, microwave heat pads, and thermacare wraps to ice packs and instant air-activated ice packs. Some patients freeze a bottle of water, and roll it across sore spots on their body.gt

Magnesium supplements Studies have shown that fibromyalgia patients may benefit from the use of topical magnesium. This can come in a cream, or in the form of epsom salt baths. Baths may also be soothing to sore muscles if you can tolerate the heat and getting in and out of the tub.

TENS Units Transcutaneous electric nerve stimulation units send small pulses of electricity to small areas of the body through electrodes taped to the skin. This can help stimulate healing and offer pain relief.

Foam rollers Fibromyalgia causes pain in the myofascial tissue just below the skin. Foam rollers can help with myofascial trigger points and relieve pain. If a traditional foam roller is too difficult for you to use, there are also foam roller massage sticks.

Raquet / Tennis ball When I was first diagnosed, my doctor told me to buy a raquet or tennis ball and stick it in a long stocking. I could then place it on one of my trigger points and lay on the floor; with the ball wedged between my body and the floor it places pressure on the trigger point and can offer relief.

Frozen water bottle Take a bottle of water and freeze it and you have a handy homemade ice massager. Works especially well under the feet.

The Corner of the Wall It’s possible to massage your shoulder by placing your back against the outer corner of a wall and slowly leaning into the wall. Placement is important: never do this on your shoulder blade or spinal column, as this can cause injury. The ideal placement is next to the edge of your shoulder blade.

Exercise It’s one of the few things doctors mention, and it’s one of the hardest things for fibromyalgia patients to do. Exercise stimulates the lymphatic system, which reduces inflammation. It’s so hard for us to tolerate exercise, and high-impact exercises such as running can exacerbate our pain. Consider low-impact exercise such as recumbent cycling, elliptical machines, swimming, water aerobics, yoga, and pilates. If these are too difficult for your body, consider consulting a physical therapist knowledgeable about inflammatory conditions to help.

Therapies

Physical Therapy Physical therapists can offer pain management techniques such as dry needling, giant heating pads, ultrasound machines, and massage to help bring your pain to a level where you can begin gentle exercise. They can also offer guidance on the right exercises for your body. Be careful to find a physical therapist knowledgeable about inflammatory conditions, so they can work with your boyd rather than against it. Those who primarily work in sports medicine may not be accustomed to fibromyalgia patients.

Occupational Therapy Have trouble with daily household tasks like showering, cleaning, or preparing food? An occupational therapist can teach you how to do these tasks while minimizing strain on your body. For example, in occupational therapy I learned the ergonomic way to bring my laundry basket to the laundry room. I also learned how to empty a top loading washer without straining my back.

Massage Massage may help you manage your pain. Be sure to work with a massage therapist who is familiar with chronic pain, and communicate with them about the right amount of pressure for your body.

Acupuncture The first ten times I had acupuncture I absolutely hated it; then I found out it shouldn’t hurt. Since then I’ve found an acupuncturist who works with my body and it has helped relieve my pain.

Trigger point injections These injections into “muscle knots”/trigger points are supposed to help release them.

Other

Consider Comorbidities Fibromyalgia comes with a long list of comorbid conditions, such as IBS, depression, and migraines. Consider diagnosing and treating comorbid conditions to improve your quality of living. My life has gotten so much better since we started treating my mast cell activation syndrome (MCAS)! A lot of symptoms we thought were Fibromyalgia have improved.

Improve Your Sleep Quality Poor Sleep quality has been linked to increased fibromyalgia symptoms. Consider consulting with a sleep specialist to check for underlying conditions such as sleep apnea or restless leg syndrome. Also consider investing in a quality mattress and other bedding to reduce your pain; if your hips hurt, for example, consider using a pillow between your knees to reduce strain.

Use Apps to Cope with Brain Fog For many, brain fog can be just as troubling as fibromyalgia pain. Consider using reminder apps for things you’re likely to forget. If you have difficulty communicating verbally, consider using augmented communication apps such as Emergency Chat.

Accessibility Tools Anything from tools like OXO to ergonomic keyboards can help make everyday tasks easier, and reduce the amount of energy you expend on chores.

Sunglasses and noise-cancelling headphones I have gotten to the point sometimes where noise and bright lights hurt. Rather than forcing my family to live in darkness and silence, I use sunglasses and noise-cancelling headphones to manage my sensory environment.

***
While there is no cure for fibromyalgia, there are a lot of things you can do to help manage your symptoms and make life more bearable. It’s time doctors stopped talking about fibromyalgia as though patients can’t do anything about their pain, and guide patients in finding the management tools that work for them

Finding Disabled Community

“What advice do you have for people with POTS who just got diagnosed?” my physical therapist asked me during our last session.

“Find other disabled people,” I replied without hesitation. “On Facebook groups or support groups or wherever they can.”

She thought I meant for advice. And yes, disabled people do have the best advice for someone living with a disability, because we’ve lived it.

“What advice did you find helpful?”

I told her about compression sleeves and avoiding heat and other triggering situations. I didn’t know how to express that disabled people can benefit from finding disabled community.

***

Like many chronically ill and disabled people, I lost friends when my conditions worsened. The first time this happened I was only seventeen, and hospitalized for bipolar depression. People didn’t know how to act around me. While I had support for the first and even second time I was hospitalized, but after my treatment-resistant depression caused me to drop out of college and move back home I lost connection to many of my friends. It felt like they were off living their lives, but I was barely holding on to mine.

It happened again when I was diagnosed with fibromyalgia. Previously, I’d cultivated a rich network of friends through my new university’s Pride alliance. Once I got sick, I stopped being able to go to regular meetings because I could barely get through a day of classes (never mind stay late to go to a Pride meeting). Only a few people bothered to stay in touch.

It was hard to make new friends, because I was just too ill to go out and socialize much. All of my energy was spent trying to complete college.

***

The people who did stick around and offered me friendship were often other disabled people. There was D, who had complex regional pain syndrome which later turned out to be related to the same constellation of connective tissue disorders I have. There was also M, my former teacher who’d retired due to kidney failure.

I have never laughed so much as I did with those two. D came over and showed me how to adjust my computer so it was more ergonomic, so I could get schoolwork done. We swapped stories about horrible medical experiences. She told me the name of a GP I could trust, who is still my GP today.

M and I met up for lunches when I was out of school and first coming to grips with Bipolar Disorder. He visited me in the hospital. He didn’t treat me with kid gloves like so many other people did; we made dark jokes about our lives. He would often order a drink when we were out, take a few sips (since he was watching his fluid intake because of dialysis), and then watch me hungrily as I consumed the rest.

There was also my mom, who deals with Lupus and chronic pain. She was a grounding force, offering a living, in my very house example of how to cope with chronic illnesses. My dad was one of the few abled people who offered continual, loving support.

But I digress.

My point is, for years after disability came to the forefront of my experiences, I was lonely. All of the people sharing relatable experiences with me were old enough to be my parents (or were my actual parents). My peers joked about never using their health insurance cards, or going out clubbing, or bragged about how little sleep they got. I felt isolated. I hid what was going on with me.

***

While I was still in college, I still had access to a range of people to help abate my loneliness. I may not have had my friends from Pride, but I could at least connect with my professors and people in my classes. I even worked a very part time job as a research assistant, which offered me more means to socialize.

That all changed when I graduated. My health took a nose-dive and I was barely able to walk. I didn’t have a wheelchair or even a proper cane, and so I struggled to leave the house.

Desperate, I reached out online. And there I found a thriving, vibrant community of other disabled people. People who made jokes about painsomnia. People showing me that I was not alone, or a weirdo. That I didn’t have anything to be ashamed about; that I could say the word disabled. People who showed me that my negative experiences with doctors, fat-shaming, and applying for disability benefits were not unusual but the norm: part of a systemic oppression that affected us all. I learned the word “ableism”, and I learned better ways to advocate for myself.

I will not pretend that every disabled person is perfect, or that the disability communities I’ve found myself in have been free of all drama. We’re only human after all. But finding people like me has allowed me to better accept myself and my body’s limitations.

Now I can ask people for advice when I’m trying to find a new cane or facing a new diagnosis. There is a whole community out there with a body of knowledge that other people simply don’t have: what it’s like to live in a disabled body. I have learned so much. It is especially helpful with rare conditions like MCAS (mast cell activation syndrome), because so often even doctors don’t know what will help improve quality of life.

Disability community is where I go to see that I am not alone, that others share my experiences. Disability community is where I go to feel proud of those who have come before me, fought for things like the ADA, and made my life just a little bit easier.

***

These days, most of my friends have some sort of disability. Most of the people I date do, too. It’s such…a relief. Because when we go to hang out, we make a point of asking about the other’s accessibility needs.

My friend MM knows I have heat intolerance and her apartment tends to run warm, so she turns the AC up before I come over. I know that her Crohn’s prevents her from eating many high fiber foods, so I make scones without fruit and bring over jam without seeds. Neither of us has to justify these needs to the other. Neither of us asks silly questions like “what’s wrong with you?” I can drop the protective shield I have up as a default due to the many ableist microaggressions that make up many interactions with strangers.

In my writing group, everyone is neurodivergent (and LGBT+). We make jokes about our illnesses. We laugh at the darkness we face. We also attempt to find a place to write that meets everyone’s dietary and sensory needs.

I’m not going to lie, I also like to watch abled peoples’ faces when a group of mobility aid users rolls up. It’s beautiful. I am (almost) used to being stared at these days, but it’s so empowering to know I’m with a group of people who have my back if anyone starts with some ableist BS.

I do have some friends who don’t consider themselves disabled. But it sometimes requires more work on my part, to explain and advocate for my access needs. To explain that actually, it’s not okay to say the r-slur around me or at all. It’s rare to find a friend who notices that a place only has stairs, no access ramp. I’ve found a few, and those are friends who are keepers. But they’re already disability literate, I don’t have to explain everything to them from the ground up.

***

If you’re the parent of a disabled child, please understand that your child needs disabled role models in their lives. They need to see that people like them exist in society. They need people to vent to about the microaggressions we face, to show them how to navigate an unjust world.

If you’re disabled yourself, please don’t hesitate to reach out to disabled community. It may take you awhile to find a place you really fit; you may have to try online rather than in person due to accessibility concerns. But don’t give up. We’re here, we’re crips, and we’re not going anywhere.

Some places to start looking for disabled community or learning more about disabled communities are:

There are so many places you can find other disabled people; this is just the tip of the iceberg. But I hope this gives people an idea of where to start looking.

Everything I’ve Learned about EDS and PT (infodump)

[TW: this post contains extensive discussion of exercise]

It is a truth universally acknowledged that physical therapy is an important part of managing Ehlers Danlos Syndrome. But what kind of exercise? How do you find a good PT? How do you make sure you’re not doing too much? Here’s a handy infodump from me, your local autistic person who has done a special interest rabbit hole deep dive into EDS and PT. I can’t say I know everything (I mean, does medicine even know much about EDS?); I promise my best to try to keep it concise.

Here goes…

Why is exercise important? Background

With EDS and other connective tissue disorders, a hallmark feature is that our connective tissue does not keep our joints/ligaments/tendons in place. (Yes, it is possible to have snapping tendons like I do in my ankles. Fun times.) What does keep us from falling apart? Our muscles.

So it’s kind of important that they be strong.

Also, as hypermobility is the “normal” for EDS’ers, we often don’t even realize when we’re hyperextending our joints and causing extra strain. We also have impaired proprioperception, or awareness of where our body is in space. Exercise (ugh I know) can help us develop a better sense of what kind of movements our body can actually tolerate, and when we’re hyperextending.

Structural problems common in EDS, and how they can inform physical therapy

However, we also tend to get imbalanced muscles with EDS and other connective tissue disorders. Our muscles in our backs and shoulders may over-tighten, for example, while our chest wall muscles are too weak to hold our shoulders in place. This means our shoulders are more likely to go into spasm, not to mention this can be very painful.

posture

Here is an example of what I’m talking about. Above is an image of a person with swayback posture via fixtheneck.com. Some of the front-of-body problems they encounter are hyperextended knees (and flat feet, not pictured) as well as weak hip flexors, pelvis tilted forward, external oblique elongated/weak, upper internal abdominals short and strong, chest muscles short and tight, weak neck muscles, and a forward head. Conversely, on the back of the body they experience short and tight hamstrings, lower lumbar flattened, strain, upper lumbar shifted rearward, upper back extensors weak, neck extensors stronger.

It is as though our skeleton is a Jenga puzzle midway through play, weak in some areas and overstrong in others. It does not take a doctor to tell that this kind of posture is close to tumbling down, like a Jenga puzzle that has come unbalanced.

To help stabilize the body and prevent subluxations and dislocations, then, one needs to strengthen the weak areas and release/loosen tension in the over-strong areas. It’s tricky, though, because if one just loosens the tension, then we’re releasing the muscles that are currently holding everything together, so risk of injury increases. Meanwhile, if we don’t loosen the overstrong muscles, the spasm can make exercises intended to strengthen their counterparts very painful.

Thus, the approach needs to be gradual and careful, with a mixture of loosening tense areas and strengthening weak areas. A knowledgeable physical therapist can help with this process, though it can be difficult to find someone who knows enough about hypermobility that they don’t push too hard, too fast.

What kinds of physical therapy are beneficial

I know a lot of people swear by the Muldowney Protocol for EDS, which are outlined in his book and discussed in this free webinar. They are intended to be taken with you to a physical therapist, who guides you through the Muldowney protocol.

Personally, I have had excellent luck unlocking those overstrong muscles with Fascial Counterstrain PT, coupled with gentle strengthening exercises. I came across this technique by accident, because I was getting pelvic floor PT for endometriosis pain and incontinence. My physical therapist also sees a lot of people with POTS, connective tissue issues, and pelvic floor issues. She started using the technique on me, and though it feels a little woo, it definitely helped resolve some of my pain.

My PT told me that my muscles were in a guarded and locked position causing pain; additionally, my brain had stopped communicating with them effectively because it was trying to avoid noticing the pain. So part of what physical therapy involved was unlocking the spasm/muscle guarding so I had less pain, and part of it involved getting my brain to communicate properly with my muscles again. For a more scientific discussion of fascial counterstrain and how it works, see Brian Tuckey’s paper on the topic.

When I started I couldn’t lay down on my back, and I could barely tilt my pelvis because things hurt so much. I’ve gradually made progress, and my hope is that it will continue to help with my wonky SI Joint etc. I made a long and rather rambly YouTube video about one of the exercises I did for my hips, pelvic tilts. I talk through it a lot because, well, if you’re in a lot of pain and kind of disengaged from your pelvis, you too might have to relearn how to tilt your pelvis into a better position.

Currently, I’m out of PT and have progressed to gentle pilates. If you have EDS, you might need a lot more time with pelvic tilts before you can do even gentle pilates. Alternatively, maybe this is the right exercise for you. It’s always important to listen to your body and not push through pain. I have been using this YT video for a ten minute gentle pilates exercise sequence for the past week or so, and am already noticing a positive difference.

Cool, so how do I find a physical therapist who knows about EDS

Personally, I would recommend joining an EDS support group on Facebook or connecting with other local bendy people in your area, and asking around.

You can also try searching for your area + physical therapy + certain keywords, such as :

  • hypermobility
  • fascial counterstrain
  • Muldowney protocol
  • pelvic floor physical therapy
  • (ciscentric but it works) women’s physical therapy
  • vestibular rehabilitation (used for dizziness and lightheadedness)

Often, physical therapists who have been trained for pelvic floor or vestibular PT may have some overlap working with EDS’ers or others with connective tissue disorders.

Don’t be afraid to ask questions before your first session, or communicate what you need to your physical therapist. Questions could include asking the front desk staff to schedule you with a PT with experience with hypermobility, or one of the above techniques.

What if I can’t find a PT in my area / PT is inaccessible for me?

The resources I linked throughout this post may help guide you in making a plan for a home exercise program. A potential plan might include:

  • evaluating areas where you’re having problems and what might need strengthening/loosening
  • using foam rollers, foam massage sticks, raquet balls, or other implements to loosen tense muscles
  • identifying weakened muscles and identify ways to strengthen them, such as gentle pilates
  • learning to take time throughout the day to be aware of your posture and identify ways to stop hyperextending joints
  • nerve glides to loosen/repair nerves trapped by swelling in your connective tissue

 

Best of luck, fellow bendies. ❤

Book Review: Nine of Swords, Reversed by Xan West

For detailed content warnings regarding Nine of Swords, Reversed — subject matter which may be discussed below — please refer to Xan’s website.

Nine of Swords Reversed cover

[Image: cover of Nine of Swords, Reversed. It is a hand drawn cover featuring a fat person with curly hair and chest hair (Dev) propped up in bed. In front of the bed there is a small table with a tray of food, a napkin, and a small book. Kneeling in front of the bed is another person (Noam) with short, curly black hair. They are smiling up at the person in the bed; Dev is cupping Noam’s cheek with xyr hand. Propped up against the wall is a cane just like the one I use.]

There is a feeling when you read good representation of yourself. “Other people feel this, too.” Or sometimes, “Who looked inside my head and wrote down what I was thinking?” This is what I felt when reading Xan West’s Nine of Swords, Reversed.  

I’m still kind of autistically processing the book, because the sheer goodness of it was kind of overwhelming. Maybe there really are people like me?

I fear that this review isn’t very coherent if I just yell THIS IS A GOOD BOOK YOU SHOULD READ IT, so instead I’m going to talk about some parts I liked a whole lot. Where I saw myself, and maybe gasped a little at seeing myself. This book told me things about myself that I hadn’t really articulated clearly, or that I hadn’t really thought were a big deal and now I’m rethinking how I see myself. I mean it when I say THIS IS A GOOD BOOK YOU SHOULD READ IT.

There is a content warning for the descriptions of both meltdowns and physical pain. These were some of my favorite parts of the book, because Xan West so accurately described what it’s like in my head at times when I’m too brain fogged, in pain, or non-verbal to express what I am feeling. I feel like this would be a good short book to share with people who want to understand more about what I’m going through, and more about what my life is like.

The book also deals with internalized ableism, which is something I’m still trying to work my way through at times. The disability community helps, but so do books like this that outline here and here are ways internalized ableism can mess up your life and your relationships. I’ve written some about internalized ableism and relationships on my blog; it was nice to see these experiences reflected in a work of fiction.

“We had each been alone with basically the same shit, just a different side of it, isolated from each other instead of supporting each other.”

Dev, the main character in the book, also describes autistically processing when pain is suddenly relieved. I didn’t know other people needed extra time to process this change in sensation! I’ve rarely even named it for myself, because pain relief is supposed to be universally good, right? But I find it sometimes overwhelming in a sensory overload way to suddenly feel…good, in my body. It’s strange, and it’s a change, and it takes awhile to adjust. Welp, Dev feels this too.

“It felt like ze was rubbing soft sunlight into my skin and the sensation was so much to process that I couldn’t speak, or even look. I closed my eyes, counting my breaths, feeling the pain ebb away. In some ways, its immediate absence was sharper, harder to tolerate.”

Dev also describes a way of checking in with xyrself. Several times throughout the book, xe describes a feeling of rightness of a “ping” within themselves. I don’t know if that’s a mage/pagan thing, an Autistic thing, a human thing — but I’ve never really seen it discussed in fiction and it’s important.

I also really enjoyed the discussion of gender-fluidity. All three characters in the book are genderfluid — as am I — and it was just so heartwarming to see other people checking in to see what gender they are at a given time. There is also a very helpful section in the beginning of the book discussing genderfluid identity and pronouns. It was nice to both see these characters on the page, and see them presented as no big deal. There are so many ways authors have done transness wrong on the page; Xan West does it right.

Nine of Swords, Reversed also addresses issues with inaccessible housing, and what it feels like to be stuck in only one part of your house because of say, stairs. I related to this very much.

The book is somewhat different from Xan West’s usual writing; they have published erotica/erotic romance in the past. This book depicts a D/s dynamic that is healthy and beautiful, but refrains from anything overtly erotic. It is simply about the relationship between two people who love each other, which also includes service and domination. And what happens when that relationship is impacted by internalized ableism, and avoiding problems rather than addressing them.

Nine of Swords, Reversed is such a sweet story. If you are looking for fat representation, genderfluid/trans representation, witchy representation, Autistic or chronic pain representation — you will find it. If you’re looking for kink that isn’t sexual, this is your book. If you’re just looking for a sweet story about two people in love figuring out their communication issues, you’ll find that too. I cannot recommend this book enough. IT IS GOOD, YOU SHOULD BUY IT. *happy flail* *squees*

 

“Is it easy to get diagnosed with EDS?”

adult-doctor-girl-355934

[Image of a person in blue paper gown and hat and goggles holding a stethoscope]

I’ve had a couple DMs from people asking how to get diagnosed with Ehlers Danlos Syndrome (EDS) or “if it’s easy to get diagnosed with EDS” and I thought I’d just write a blog post so I can link it to people.

Spoilers: it’s not easy.

Or: lack of patient knowledge about EDS is not the only reason most people are only diagnosed until their 40s.

Most doctors don’t feel that they know enough about EDS to diagnose it, even though the diagnostic guidelines are available for anyone to check. In addition, if any genetic testing is involved, they don’t usually order that kind of thing. Note: if your doctor wants to learn more, there is now a free continuing medical education class on EDS.

So in order to get diagnosed Officially with EDS, most of us end up seeing some sort of geneticist. The problem is that genetics is a relatively new field in medicine, so there is a shortage of geneticists. Also, some geneticists specialize in fertility/IVF or in infants and children with genetic disorders. So first off in your quest, you need to find a geneticists who: (1) specializes in EDS/connective tissue disorders/hypermobility; (2) is taking new patients; (3) that you can get to; (4) that you can afford.

In my experience, the easiest way to find a geneticist in your geographic area is to hop onto one of the patient-run EDS support groups on facebook and ask for recommendations; some of them also have sticky posts about finding doctors.

Next up in your quest, you need to make an appointment. Due to the specialized nature of these doctors, many require that you fill out the patient intake forms before you make the appointment. These are very detailed medical histories, and many also include information about medical issues in your family (parents, siblings, aunts/uncles, children, and grandparents). This of course assumes you know your family history — you may not have that information, particularly if say you were adopted. Most of the forms run to around 20 pages, so it takes a significant amount of time to complete them, make a copy for your records, and mail/fax them in to the doctor.

Then you need to wait for a call back to find out where you are on the waiting list. I lucked out and saw a geneticist who had just opened her practice, and my wait was 3 months for an appointment. Around the same time I filled out forms for one of the pre-eminent geneticists who specialize in EDS. I’m still waiting for a call to let me know when I’ll get on the waiting list. Her waiting list is approximately three years long, according to her website.

My appointment, when it happened, was approximately an hour long and included a complete physical exam, a medical history, and a family history. The doctor also spent a long time explaining my diagnosis and diagnostic options to me. She said if I have EDS, I most likely have the hypermobility type. She couldn’t rule out hEDS, as there is no blood test for hEDS. She offered to run genetic testing, however, it was expensive and most likely wouldn’t show anything. My official diagnosis is “unspecified connective tissue disorder”, as the geneticist said that the connective tissue disorder I have may not have been discovered yet.

Hypermobility is a spectrum, and there is an ongoing debate in the medical field right now how much hypermobility is benign and just makes you good at gymnastics, and how much hypermobility indicates a deeper pathology of an underlying connective tissue disorder.

I know that many people want a diagnosis because they want to be taken seriously by doctors. What I have found is that I can still access care with my weird, “unspecified connective tissue disorder” diagnosis. There seems to be an increase in general awareness of EDS and related disorders — thanks to the advocacy of patients — and while medical professionals may not know as much as I do, they’ve at least got the basics.

Even when I was on the waiting list for the geneticist, I found telling doctors “I am on the waiting list to see a geneticist because I have suspected EDS” helped me immensely.

Additionally, having some sort of diagnosis — even if not definitive — helped me and my GP figure out that I have MCAS.

There are significant systemic barriers to being able to access an EDS diagnosis / connective tissue disorder diagnosis : financial issues; knowledge of how medical systems work; knowing one’s family medical history; physical access to major medical centers which are more likely to have geneticists on staff. These are just a few of the many reasons why people may have trouble accessing a diagnosis.

It is tempting to look for other solutions, such as ordering genetic testing from somewhere on the internet. I certainly wouldn’t blame anyone who tried that route to access treatment. I’ve been desperate enough to consider it myself.

For example, it is of vital importance that those with vascular EDS — which can be life-threatening — know of their condition so that they can alert doctors and emergency personnel, and so they can make informed decisions about everything from surgery to childbirth. These waiting lists and systemic barriers to diagnosis are especially cruel in this case.

What’s important to know is that if you do suspect you have EDS/a connective tissue disorder, there are things you can do right now to help yourself feel better. These include:

  • learn to pay attention to what makes your body snap, crackle pop and reduce doing those motions. learn the limits of how far your joints can bend and if at all possible, avoid hyperextending them.
  • begin physical therapy to strengthen your muscles, which are holding your joints in place. it is important to receive physical therapy from someone who is knowledgeable about EDS / hypermobility if at all possible. Many people have had luck with the Muldowney Method, which includes instructions for physical therapists to follow. Personally, I have had good luck with fascial counterstrain therapy to reduce pain/muscle guarding and then gentle exercises similar to pilates. Again, asking patient-run EDS groups on Facebook may help you locate a knowledgeable practitioner.
  • consider getting braces and orthotics to support weak joints and prevent damage. It is important to balance how often you wear braces with building muscle strength in weakened areas. You can find a good selection of braces at your local pharmacy, Amazon, or via the Body Support Store. Looking for ring splints? You may want to start with Oval-8s rather than shelling out for silver ones. Some people have also had luck with KT-tape, but be careful in case the adhesive bothers your skin.
  • learn more about EDS and how it affects your body:

In conclusion: there are many systemic barriers to accessing a diagnosis of EDS or another connective tissue disorder. Not only is it a “rare” disorder, but our doctors are rare too! For me, getting diagnosed was worth the effort and has helped me continue to access care. However, there are non-invasive things you can do which may help you manage symptoms that do not require seeing a geneticist. If you’re on a waiting list for the geneticst or simply consdiering whether or not to try to see a geneticist, it may be worth trying these non-invasive management techniques.

I’m tired of chasing a cure

Tablets_and_Pill_Medication

[Image of white and orange pills, green and white capsules, and a syringe.]

 

Are you better yet? Get well soon. Race for a cure. Pray for a cure.

There is a persistent belief amongst able people that a cure is what disabled people should want. To abandon our disabled selves and bodies and assimilate into a perhaps unachievable abled skin.

Pushback to this idea often comes in the form of the social model of disability, which states that we are disabled by society and lack of access rather than our bodies. For many, the social model can be liberating : by locating the cause of our problems outside our bodies, we can begin to love ourselves again. Tackling systemic ableism may feel like tilting at windmills, but it is still easier to address than some kind of failing within ourselves.

There is a criticism of the social model of disability, located in the idea that some disabled people may want a cure. Particularly with things like chronic pain/chronic illness, a cure is seen as something that can itself be liberating: a way to simply be in one’s body without feeling pain, for example.

There is a danger in the cure mentality, as it can be a slippery slope towards eugenics when it is applied by abled people. Many in the Deaf and Autistic communities do not want a cure, and feel that those who advocate a cure are advocating that they not exist anymore.

Sometimes it comes down to how we see our individual disabilities: are they an intrinsic part of who we are? Or are they an identity that comes with a side of agony which we would gladly give up? How do we feel when abled people start advocating for “cures” – which may come in the form of eliminating our people entirely – rather than when the desire for a cure comes from disabled advocates?

This essay is both about this community tension over cures, but also about the internal tension that comes from chasing cures. To be clear: I have chronic pain, and I would gladly wish it gone, cured, away. Yet I also cannot spend all my time pursuing cures, because I would never have a life.

***

I have had a fibromyalgia diagnosis for five years, but I am deep in my religious phase. Specifically, I am neo-pagan and am somewhat less skeptical of crystal cures and reiki. I am tired of doctors who do not listen and blame my fatness for my disability. I want to feel a modicum of control over my life again, and this is what neopaganism offers: the belief that I can somehow control my own pain, if only. If only I have “positive energy.” If only I use the right combination of crystals. If only I avoid gluten.

I am desperate for a cure, to regain the life I used to have when I hiked and camped and could take a full courseload of classes and reading was easy. Back when I didn’t have to remember to take medications, or worse yet, refill the pill boxes.

My friends at this time are what I would now call deeply ableist. One of them saw my shower chair and laughed and called me an old lady. The leader of our little group is a chiropractor who told me that his patients do better when they don’t think of themselves as having fibromyalgia, but instead think that they have pain to overcome. I am at first repulsed by this, but soon I internalize that I should not say I have fibromyalgia. It is as though saying the word is some kind of summoning charm, a curse that will birth my problems into reality.

If only I don’t say I have fibromyalgia, perhaps I won’t have it.

My therapist doesn’t help. He is supposed to be experienced with working with chronically ill people, but he doesn’t seem to understand things like “not having the same amount of energy every day.” Once I confess to him that I want to volunteer but simply don’t have the energy; that the schedules for volunteering rely on the idea that I can come in at the same time every week; that there aren’t enough opportunities to work remotely. I say that I feel deeply guilty for not volunteering, because helping others has always been a core part of my identity.

Instead of sympathizing or offering concrete problem solving advice – things that would have been helpful – he said in a disparaging tone, “Well, when was the last time you helped someone else?” I felt such a deep sense of shame that there were so many barriers to something as simple as volunteering. More than that, I felt that I should simply be able to overcome them if I tried hard enough.

If only I tried hard enough, disability would not be a problem.

***

Back to the pagans. I am at a Healing Drum Circle. We take turns laying in the middle of the circle while people drum around us. We are white and off beat but trying our hardest. The rhythm and vibrations from the drumming is supposed to offer healing energy. We are told to state our intention upon entering the circle.

I have resolved that what would heal me the most is to make peace with my disability, to stop warring with my body. I want acceptance.

I am drumming next to the chiropractor. He turns to me. “Are you going to wish for a cure?”

All at once I feel that I should. If only I wish for a cure, maybe I will have one? Certainly I won’t have one without wishing. What is the harm?

I spend many more years hating myself for not being able to overcome my disability. I regret my choice, but don’t know how to find acceptance for my disabled body.

***

I am in remission. This is a thing that doesn’t happen. I am on antibiotics for Lyme disease, and my symptoms are in complete remission. I go to my primary care doctor. She pushes on the fibromyalgia tender points, the ones that are diagnostic. None of them hurt. We both marvel at this. Am I cured? Was it really Lyme all along?

I go hiking. I take a video of the hike so I can remember what it feels like to be out here, walking, without pain. It is some kind of miracle, I think. I am afraid to hope.

The prescription for antibiotics expires. The symptoms come back. If it were Lyme, wouldn’t it be cured? There is a controversy here, a big one. Some people believe that one can have chronic Lyme disease and need a longer course of treatment for antibiotics; other people think that is bunk.

I am not here for a referendum on whether chronic Lyme disease exists; I believe that it does for some people and I support them in their quest for relief from their symptoms.

It is enough that I believe I must have chronic Lyme, based on my own experiences. I read the studies that indicate that the relief from doxycyclene are due to its anti-inflammatory properties. I take non-steroidal anti-inflammatories, but I am no longer in remission. The pain is back and somehow it is worse than it was before because I know what remission feels like. I had started to forget what it felt like to be without pain.

I take more antibiotics, against the advice of my general practitioner. I have found a specialist in chronic Lyme and he prescribes them, along with a number of expensive supplements and a special diet. My symptoms get worse and I feel I am forever chasing the feeling I had on that hike in the woods. Shouldn’t I be getting better?

I am in the hospital for bipolar depression, another of my chronic illnesses. I am off the chronic Lyme treatment. I have a Z-pack of antibiotics for a cold, and the hospital has no probiotics. I get an infection of C difficile, an overgrowth of deadly gut bacteria more common in those who have used long-term antibiotics. I take medication for it that makes my mouth taste like iron, and I am nauseous for weeks. I get better, then that winter I get C difficile again. None of the medications work. I could have died, if not for an experimental fecal transplant.

I abandon pursuit of chronic Lyme treatment because I fear it will kill me.

I still want to feel like I did on that hike in the woods, but I begin to wonder if that is impossible. I am afraid to hope. I am battered by hoping. I am depressed.

***

I have come a long way since I chased every cure. I am connected to the disability community, versed in disability theory. Yet I wake on my birthday to a skull-splitting headache, and it does not go away. For months, I have this headache.

I consult numerous doctors. First the emergency room, then my GP, then local specialists. Eventually I travel to other states to consult more specialists. No one knows what is causing my headache.

I begin to fear that I will never get over it. I have a friend who’s had a headache since she was thirteen. Maybe this is my normal now.

I remember the moment I realized the pain had become chronic. That I couldn’t concentrate because so much of my mental energy was relegated to ignoring the pain. I couldn’t read, I couldn’t cook, I could barely dress myself. Everything was agony. Was this my new baseline? I sobbed, and it hurt, but I couldn’t stop the tears.

I have so many tests. Numerous MRIs from different angles and of different body parts. An EEG, to test for seizures. An EMG, where the doctor sticks needles in my arms and legs, to test for nerve damage. Anything, to find out what is causing my mystery headache.

I now know I have a connective tissue disorder, and I research mystery headaches in connective tissue disorders. There are only a few doctors who treat this on the East coast. Some of them do not take any insurance.

Before I can see them, the headache goes. I had finally gotten a prescription for physical therapy, and the therapist manages to manipulate my neck and head so that the headache disappears.

I weep with relief. There is something I can do, if this comes back. This is not my new normal. In a way, I have had a cure for something, even if it’s not my widespread body pain.

But at what cost? I mean, don’t get me wrong: I would have given almost anything to be rid of that pain. Yet I have spent my year alternately living on a heating pad or getting tests. I have accomplished survival.

I still have so many things “wrong” with my body, and I am tired of being poked and prodded.

***

Perhaps none of this makes sense. Or perhaps it only makes sense if you live through it: the hope, the barrage of tests, the blaming yourself when your body still refuses to cooperate and just get better.

There is a cost to pursuing miracle cures. It is a high cost.

People ask me, “have you tried yoga? Kombucha? This special water?” And I don’t have the energy to explain that yes, I’ve tried, I’ve tried crystals and healing drum circles and prayer and everything.

What I want to try is acceptance. I want to see what happens if I can simply accept myself for who I am: battered, broken, hoping for relief, still enduring somehow.

I will still take a cure if it’s presented to me, but I am so tired of trying to bargain with the universe for some kind of cure. The price is simply too high to live chasing cures, because in doing so I’m missing living my life.

I only know that in chasing to achieve the person I once was, I will miss the person I have become.

Routines, depression, and me

I have a series of routines I use to try to keep depression at bay. They are mostly a hodgepodge of self care I should be doing anyway.

Things like: get dressed every day, even if it’s just yoga pants, even if I’m crawling right back into bed.

Things like: always eat breakfast, and always eat breakfast with enough protein to get me going in the morning.

Things like: shower and wash my hair when it needs it, which for me is roughly every other day or sometimes every day.

It took time and effort to develop these routines. I started mostly to stop the hospital staff nagging me about “faking it until you make it”, and because it’s easier to get discharged from inpatient behavioral health (or “the psych unit”) if you’re clean and don’t sleep all day. I kept up my routines because, annoyingly, they help.

But what happens when I physically can’t do them?

I have fibromyalgia, a connective tissue disorder, MCAS, dysautonomia, and (currently) a sinus infection on top of everything else.

Sometimes I just don’t have the energy to shower. It’s a fall risk, and it sets off my MCAS and my dysautonomia due to the heat and the chlorine in the water. But I desperately need to shower for my depression management.

I try to make the best of it, balancing multiple conflicting access needs. But I have to say, with my sinus infection this week I got rather rank. And with the increase in the greasiness of my hair, it was as though I could feel the depression rearing its head and sniffing the air as though preparing to come roaring back. So I showered, even though I didn’t have the energy.

I don’t have answers for conflicting access needs. It’s an unwinnable game. I just make the best compromise I can and live with the consequences.

I share all this because I suspect I’m not the only one balancing multiple chronic illnesses, or a mental health issue or several, that has trouble keeping up with all the self care. And it can feel like my fault for not drinking enough water, or staying up too late, or eating the wrong breakfast. If only I had done things differently, or my routine was better, maybe I would feel better. I’m here to tell you, down that path lies endless self flagellation and sorrow.

It’s sometimes impossible to meet all your body’s needs, and sometimes you just have to live with an imperfect compromise.