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The Interdisciplinary Work of Lyss England

Posts tagged chronic pain

I met  up with my friend, Robin Whale today and he showed me a few positions he recommends to regenerate spinal health. In the following videos, he demonstrates 3 different positions to try as well as “breathing through pain”, a  strategy he talked a lot about during our interview last week. Robin also takes us through getting up from these positions safely (and with as little pain as possible) and explains how he learned about each of these positions.

“Remember. Gently and slowly over time.”

If you’re interested in learning more about Robin and his practice, visit http://www.whalefamilychiropractic.ca/ .

 

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Check out my interview with Amy Anderson-MacArthur (@veganmomofmany) about:

– Her favourite story form her bartending days
– Moderating a Vegan Keto group, “Vegan Keto Made Simple“, (and why she eats the way she does)
– Managing chronic illness naturally
Having a stroke during her fifth pregnancy at the age of 30…and life afterwards
Sobriety
– Using CBD oil and cannabis vs. Wine Mom culture
– Being happy and the attitude it takes to get there
– Parenting a child with Sensory Processing Disorder
– Encouraging autonomy in children

Featuring Fresh Nova Scotia Tunes:

“Frantic” by John Rodgers and Julian Warme (Written in one night!)
“On Crutches” by John and Belinda
“Chips” by HighJinx and J-Hooligan
“Butts” by Brock MacArthur

 

Screen Shot 2017-10-29 at 5.36.26 PMContent- medical system, ableism, denial of access, chronic pain, mention of parent death, pharmaceutical medication, naturopathic medication.

I was eight years old, running some relay race in gym class, when I first experienced the pain. Burning, throbbing, aching pain in my ankles and knees. My ankles gave way, and I fell, embarrassingly, in front of my peers. That was how it all began- a lifetime of chronic pain.

Between then and when my mom got sick when I was fourteen, she advocated or me to have any and all testing done to rule out any potential chronic health issues. She had fibromyalgia, and had since my brother was born, so she knew to believe me when  said I was in pain…though I don’t think she wanted to believe the extent of it. As tests came back negative again and again, I grew to normalize my pain, assuming everyone lived this way. By the time I was in university, the pain wasn’t just in my ankles and knees anymore- it was overwhelmingly in my shoulders, neck, and back, though my legs also often ached and I couldn’t seem to digest any food or drink aside from water and milk chocolate. It was overwhelming, but as far as I was aware, everyone felt this way.

If anything, I believed that the issues all stemmed from my depression, which is what my doctors told me after yet another CT scan came back normal. My doctor had prescribed me Prozac and Clonazopam after my mom died, days before my sixteenth birthday. By the time I was in university, my prozac prescription  had been maxed out and replaced with a high dose of Cipralex. Despite this, I was actively self-harming (via cutting and self-starvation) daily and was in more physical pain than ever.

Then the accident happened. You can read about it here. After that, my pain got infinitely worse. What I had been able to normalize before was no longer something I could even think about ignoring. So I went back to my doctor and we started the torture- I mean testing- process again. CT scans, (“inconclusive”) MRIs, EKGs, and a million other tests I can’t even remember the names of. For one, they put thin needles in my nerves and sent shocks in to test my nerve response. The specialist didn’t believe me when I said it was excruciating. At some point, my doctor diagnosed me with fibromyalgia. In other words, he gave his lack of understanding about what was going on with me a name that was meant to acknowledge and validate my wide-range of painful symptoms.

I took to the Toronto Public Library, reading anything and everything I could get my hands on. I made lists of potential treatment options- both based in traditional Western medicine and more alternative methods. I  stepped into the role of advocate for my own treatment and watched the battle unfold. Since I was no longer a passive recipient of my doctor’s decisions, he and I began to clash. At one appointment, he suggested the third or forth pill I could try (he’d prescribed me more medication, Lyrica and Tramadol, on top of my psych meds upon my diagnosis).

I said, “I use cannabis to manage my symptoms and have for years, that’s how I am able to function. Can you please give me a prescription so that I don’t run into any issues with the law while trying to medicate appropriately. My understanding is that fibromyalgia makes me eligable for this prescription”.

He said, ” I will maybe consider it after you have tried every approved pharmaceutical drug approved for your condition”.

He sent me to a pain clinic in Hamilton, where the doctor prescribed me Gabapentin and began to give me nerve block injections, a cocktail of drugs injected directly into the nerve in the curve where my neck and shoulder meet with a long, thick needle. The first time, I screamed the way people cry when they get punched in the nose. The spasm I experienced throughout my entire body was simply indescribable.

“Be quiet, you’re going to scare the other patients,” said the specialist. He turned to my partner, “don’t let her read up on the Gabapentin, I’m sure she’ll just end up with all the side effects if she does that”.

As it turns out, Gabapentin was one of the medications I got the most side effects from. It’s also the most common medication people recommend to me to this day when they find out I experience nerve pain.

It took three or four trips to the pain clinic before the specialist diagnosed me with neuropathy and declared that nerve block injections were not an appropriate treatment method for me after all.

I don’t even remember how many medications I tried to appease my doctor. Lyrica, Gabapentin, Tramadol, Nucynta (a powerful opioid similar to oxy), Cymbalta, Amitriptyline, Prednisone, and more. I was a full-time student in the first few years of my twenties, and feeling like a drug addict because I was following doctors orders. It was around this time that my partner’s father accused me of being an opiate addict and threatened to disown us (flash forward- we ended up disowning him). It was right around this time that I failed the only class I would ever even come close to failing. It was right around this time that I was constantly suicidal because the quality of my life was so deeply affected.

I began to try every alternative treatment I could think of- yoga, acupuncture, massage, naturopathic remedies, homeopathic remedies, energy therapy… Most of them seemed to work a bit better, but I had a  long way to go. Regardless, it cemented my commitment to having some control over how I managed my symptoms.

I went back to my doctor and said, “I’m done with this. I don’t want to me on drugs anymore. I want to manage my symptoms naturally, and I know it’s going to take a lot of work, but this is what I want to do. I brought my paperwork, I’ve filled it out, please sign off on a cannabis prescription.”

He said no.

I found another doctor through a friend who was compassionate and gained legal access under the MMPR in 2013. After evaluating my symptoms, he prescribed me 20 grams per day so that I could tincture or eat it if I wanted to, rather than smoking it. At the same time, I (against the advice of my doctor- don’t do this!) went off all my medication cold turkey and changed my diet to exclude gluten, sugar, and nightshades. I went through about two weeks of the hell that is opiate withdrawal and sugar withdrawal combined, and then almost immediately noticed a huge difference in the way I felt. I still lived with serious pain, but I was able to manage it- through choices I made.

Because my prescription is so large, I realized the importance of having access to grow it myself. It would cost over $100 000/year to purchase my medication from an LP. Since having my prescription, I’ve experienced two sets of law changes and the advent of recreational legalization.  At one point, I literally received a letter form Health Canada telling me to destroy my plants because they were no longer allowing patients to grow for themselves. LPs were to be the only option. While I’m excited that access will be easier for many people and they won’t have to go through what I did, I’m also terrified that it may impact my access moving forward. My access, and thousands of other people who could probably tell a story similar to mine.

I am 26 years old, I received my diagnosis 7 years ago, and I work full time, volunteer 10-20 hours/week, maintain countless beautiful relationships in my life, and manage my pain pretty damn well overall. I smoke a ton of cannabis, am conscious of my lifestyle, eat really well, go to therapy once a month, and take naturopathic medicines. Because that is how I choose to manage my pain.

I want to see the widest possible range of access for this versatile plant. I want to see people having access to grow their own, cultivate the strains that work best for them. I want to see dispensaries where  people can easily access multiple strains. I want to see mom-and-pop shops instead of LPs. I want to see less stigma, because autonomy is important for disable people like me. Access is important to disabled people like me.

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I was nineteen, living in downtown Toronto with my partner for the summer. We did a lot of going to punk shows, and a lot of drinking beer. One evening, our friends stayed over. We didn’t stay up late, didn’t drink much, but had a nice time. The next morning, I walked one of our friends to her streetcar stop, which was across the street from our apartment. We were walking across the intersection at College and Dufferin, with me just behind my friend. The crosswalk symbol glowed a half-burnt out white man walking. 
And then I saw your car, about to turn left, right into the crosswalk. I thought you were going to stop, it was our right of way, but you kept going. You never stopped at any point, and were clearly in  hurry. I would guess you were going at least 40km/hr. I thought you were going to stop, but you kept going. You hit me, as I turned towards your car at the last minute. I ended up flat on my back in the middle of the street. That was when you stopped.
I jumped up, shot full of adrenaline, I didn’t feel anything at all. Frozen, my typical initial response to a threat. I’m fine, I’m fine, I’m fine. You got out of your car, ran towards me, and hugged me. I thought you were going to stop, but you kept going. You said, “I’m so sorry! Please don’t call the police, I have so much going on right now”. You were crying.

My friend’s streetcar came. I turned to her, “go, catch your streetcar. I’m fine, I’m fine, I’m fine”. She caught her streetcar. A man who had been parked just down the street yelled, “call the police!’ to me. I hated the police. You were obviously not okay right now. I’m fine, I’m fine, I’m fine. I said, “listen, go pull over somewhere until you calm down”.

You got back into your car, and I crossed the street again and went home. As I entered my apartment, I felt the pain hit. My arms and legs were numb. My neck hurt so fucking badly. My entire body ached like the worst flu I had ever had. Like I’d been hit by a car. I told my partner what happened, and he told me I should have called the police to report it. To hold you accountable. I told him I was in too much pain to hear him out in that moment.
I want you to know that I have lived with pain every single day. 
I want you to know that typing this letter to you may be the only thing I’m able to do today, because my arms feel like there are pins stuck in them that have been roasting in a fire for three days. 
I want you to know that I have spasms in my neck, shoulders, back, legs, and arm every day.
I want you to know that finishing my undergraduate nearly killed me because I was trying to figure out how to manage my chronic pain. 
I want you to know that I’ve been on countless medications, each with side effects worse than the last. 
I want you know know that I spent years fighting for my right to medicate naturally with cannabis, and that the legal structuring of the laws around that have made it incredibly difficult to access and that the stigma I deal with because of it threatens my present and future every day.
I want you to know that starting my career has been made more complicated by my chronic pain. The career I’ve chosen involves shift work (including overnight shifts), physically assisting people at times, and a lot of emotional labour. The shift work fucks up the rhythm I’ve worked so hard to establish, the one that managed my pain, the physical assistance of people is simply not possible at times, and it’s hard to allot emotional labour for work AND for managing my own pain (not to mention layers to trauma). I have had to advocate for my physical needs, sometimes successfully, sometimes at the detriment of my career.
I want you to know that I regret not getting your contact information so that I could send you this letter, if not hold you accountable.
I was nineteen. I was young, idealistic, scared, and shocked. You were a middle-aged woman with a big fancy SUV who had the nerve to ask me not to call the police. You had the nerve to drive away. I thought you were going to stop, but you kept going. I don’t know what you were going through at the time, but you didn’t know what I was going through either. I wonder if you live with the effects of this event every day, like I do, or if you’ve forgotten. I wonder if you told your partner or your children or your parents or your friends or you coworkers what happened, and what they said to you. I wonder if you kept it a secret.
I thought the pain was going to stop, but it’s still going. 

 

– A.

CW: homelessness, PTSD, depression, anxiety, Christmas, chronic pain, eviction, mentions of rape, rejection, MMJ, gaslighting

For the first time in ten years, I wasn’t literally going crazy around Christmas. Usually around this time of year, everything makes me feel beyond sad and so anxious I feel like I’m dying constantly. Last year, this mental health crisis began in November and lasted until about September. Almost an entire year of crazy.

But this year, so far, I was managing a lot better. I was doing things to take care of my mental health. I was a few moths into therapy, and I quit a job that was infringing on my mental health. Christmas one week away, ten years without mom two weeks away, my twenty-sixth birthday two and a half weeks away. Nine year rapeiversarry less than a month away. Nine year suicide attempt anniversary less than two months away. But I was holding up. Even though I had been fired from a job I’d really wanted, rejected from multiple others, rejected from a writing fellowship, rejected from grad school, and was feeling a little undervalued in my many volunteering attempts (all in the last couple months), I was actively working on myself and making an effort to do things that felt good. Healing.

And then my landlord delivered an N5 to my door. Three complaints, all within the last month, from the neighbour upstairs about my dog barking when we weren’t home. This neighbour had a history of complaining about anything and everything in the building, and had lived there even longer than the three years we had lived there. For the last couple of months, everything in the building had been quiet, and, as far as I was aware, there had been no drama whatsoever.

Our names were spelled wrong on the forms, which automatically voids them. But it was still an unnecessary stress that, honestly, infringed on MY enjoyment of MY space. We had seven days to correct the problem, or we would be taken to the Landlord Tenant Board. My landlord told me to get a shock collar to leave on my dog when she was unsupervised, which I told him I was uncomfortable with, he suggested I locked my dog in the one bedroom with a small window she couldn’t see out of, and he told me not to be upset. He was delivering me with a Notice to End my Tenancy a week before Christmas in a town with a 1% vacancy rate.

One of the time periods where the neighbour claimed Luna was barking, my partner had been home. During another documented complaint, the neighbour had contacted my landlord five minutes after I had messaged her back telling her I was leaving where I was to come home, as she had texted me informing me that Luna was barking. She didn’t even give me a chance.

We’d been in communication about this brand new issue my five-year-old dog was apparently suddenly having in a building she had lived in for three years. I had communicated to the neighbour the efforts I was taking to address the issue: working with my dog when I was home on making no sound at all, ever (she only ever barked when someone knocked on the door or when the dog across the hall went out), blocking off the one room where she could see out the window, and working from home 90% of the time.

That was something that was starting to be a little triggering. For about a month, half the time I would leave my apartment (which was barely ever, thanks to a lovely combo of chronic pain and chronic anxiety and depression), the neighbour would text me to say “Luna is on a barking spree”. I would thank her for letting me know, and let her know that I would get home as soon as possible. Whenever I was out for a reason aside from work, I left what I was doing and immediately came home to my silent dog.

I started to do some tests, in the hope of better understanding the issue. I would walk up the stairs, loudly, to see if that was enough to trigger Luna to bark. It wasn’t. I knew that ringing the buzzer or knocking on the door would trigger barking (because she’s a dog), but the barking never went on for more than a couple minutes, at most. I stood out back and had a smoke and called a friend on the phone. No barking. On this form, it claims that she was barking continuously for spans of 90 minutes or more. I asked another neighbour, directly across the hall, if it was an issue, and she said that it wasn’t. As far as I was aware, this had never been an issue before, and I was actively working on it (under the assumption that it was true). My landlord himself had spoken to me once, about three weeks ago, about receiving a call out of concern (not a complaint) because Luna was barking, which was so unusual for her.

But apparently it was a big enough issue this past weekend that it was ground to threaten eviction.

Before we lived in this apartment, we had spent three months homeless living out of backpacks in a generous and awesome couple of friends’ spare bedroom after having a falling out with a friend who had told us we could rent a spare room in the house he owned while we got on our feet after moving to Northumberland County. For three months, I learned that there is nothing more scary than feeling fucked up and having nowhere that was safe or yours to go to feel those fucked up feelings and cope with them.

We weren’t bad tenants. I openly utilize (legally prescribed) medical cannabis to treat my health issues, and I have a (sweet, loving, obedient) dog who is selectively aggressive with other dogs and apparently sometimes barks (!?). So I keep my dog on a leash and work actively with her and invite people to contact me regularly if there is anything we are doing that inconvenienced them in any way. I’ve lost track of how many times I have given my phone number to all of my neighbours. I really tried to go out of my way to have a good relationship with my neighbours in the building.

I was almost always home. I was trying to work on some freelance art and writing and other creative projects while doing a lot of work with a local charity that is important to me. And I was trying to manage my (both physical and mental) health. And now I’m sitting in my living room at 4:55 a.m. having an anxiety attack because this home I am building is threatened (even abstractly) and I’ve been rejected yet again in a huge way from this place where my partner and I so desperately want to build a life.

And mom’s still dead, and someone violated my body without my consent a really long time ago, and I still want to die sometimes, and no one believed in me enough to hire me, and no school believes in me enough to accept me, and I’m still in pain every day, and everyone is still singing the same bullshit Christmas songs and watching bullshit Christmas movies.

I’m still here.

Writing instead of losing my fucking mind. One foot in front of the other. Hoping I have a community behind me.