Cannabis and disability advocate Peter of ChronicKryoatics has been producing visual content on TheWeedTube for over half a year now, with categories ranging from tutorials to mukbangs to reviews and more. In their latest video, Peter shares their personal experience with Complex Regional Pain Syndrome (CRPS) and how it can affect even seemingly simple tasks such as grocery shopping.
I am thankful to have had the opportunity to ask them more about their story and journey to spread awareness for their condition. Here is our exchange:
RJ: Hey Peter, thanks so much for taking the time to answer a few questions. First off, for those who are unfamiliar, what exactly is Complex Regional Pain Syndrome (CRPS) and how does it affect your daily life?
Peter: Thank you for asking me to do this, it means so much to me to get to spread awareness about my chronic illness. CRPS is a chronic nerve pain syndrome that can affect one or more of your limbs, or in my case I have it full body so it affects my internal organs too. I currently have chronic pancreatitis due to my CRPS which heavily restricts the amount of fat I can consume a day. On top of that CRPS causes a myriad of other symptoms like temperature and color changing of the hands and feet, changes in nail and hair growth, joint swelling, muscle dystonia and atrophy, allodynia a.k.a. painful response to non painful stimuli like touch, vibration, wind, ect; just to name a few. Nerve pain is a burning pain often related to the feeling of burning yourself on the oven or with hot oil, the pain comes and goes in what's called flares. Flares can last from minutes to weeks or even months depending on the circumstances.
With all those symptoms I’m sure you can guess just how difficult it makes daily life, but a few examples I guess would be simple little things like trying to put up the backdrop for my videos. Sitting at my desk for long periods to edit. Grocery shopping like I show in my video. It’s rough but manageable.
R: What is the inspiration behind your cannabis advocacy? Was it rooted in using marijuana to relieve pain?
P: My cannabis advocacy started when I couldn't find pain relief in any other treatments that are normally given to patients with CRPS. We tried physical therapy, cortisone shots,a ganglion nerve block, and the last straw was ketamine infusions. I had my first ketamine infusion when I was 17; I was dizzy for hours after and not myself at all. I was scared of what more infusions would do and so was my mom. It was my mom actually who turned me onto cannabis and using cannabis to relieve my pain. When I saw what the plant could do for me I was dumbfounded that doctors were subjecting CRPS patients younger than I was then to these ketamine infusions without suggesting a natural alternative like cannabis first. I wanted others with chronic pain like mine to know that cannabis was an option for them.
R: According to a writer at The Mighty, CRPS is “the most painful medical condition known to man at a 45/50 on the McGill Pain Scale.” If it’s not too personal, is your CRPS type I or II, and where do you regularly feel the most pain?
P: My CRPS is type II meaning that it was caused by a direct injury to my nerves instead of, as in the case of CRPS type I, caused by illness or injury that did not directly damage the nerves in the affected limb. CRPS normally starts in just one limb, the limb it originated in for me happens to be my left leg where I have a lot of nerve damage and scarring from a case of Necrotizing Fasciitis (Google it if you dare) I had when I was 12. That's the “direct nerve damage” that dictates I have the rarer type of CRPS, type II. The pain is felt everywhere for me but tends to really affect my left leg, arms, shoulders, lower back and pancreas. To give context to the McGill Pain Scale, CRPS pain is rated 45/50 while amputation of a single finger without anesthetic is rated at about a 39/50. The pain of CRPS can be so severe it has been called the “suicide disease,” like many other chronic pain illnesses, and has lead to the deaths of many because the emotional and physical pain of it all can be very overwhelming.
R: In what ways does cannabis benefit you physically, mentally, and/or spiritually, if at all?
P: Cannabis benefits me in so many ways from helping me move around more freely without pain to keeping me calm and positive when things get dark. Living with CRPS can be very isolating and depressing at times, like all other chronic illnesses can be, but it happens very suddenly. One day you’re fine and the next you have an illness that strips you of your freedoms and joys in life. It can be really hard to deal with new medications you can’t pronounce the names of, unending amounts of doctor’s visits and being pinballed back and forth between specialists, the friends that inevitably leave you because you become difficult to hang out with and they don’t understand what you are going through. All of it adds up and I wouldn't be able to make it through the day without cannabis to keep me grounded.
R: Sidenote, that is a super badass cane in your video.
P: I love that cane, funny enough it’s my second one with that pattern because I lost the first one and loved it so much. I think it's super important to have mobility aids you feel comfortable using, not just physically but mentally. I call that cane my dragon cane because it looks like it has scales, and I've always wanted to dress up the handle to look like the head of a dragon to complete the look. In public people tend to stare anyways and it's a good way to make you feel like maybe it's not you, maybe they're just staring at your badass mobility aid.
R: What would you like people to know about those with CRPS and other physically debilitating conditions?
P: Oh boy, there’s so much honestly but I think I’ll keep it short. People with disabilities are people too. Regular people with hopes, dreams, fears and anxieties. We may look completely fine, if our illness is invisible, or maybe you can see the illness’ toll physically. No matter what though treat us like people too, smile when you pass us, don’t stare.
R: What do you enjoy most about being a WeedTuber, and what keeps you driven to create content?
P: Aside from being able to advocate for my illness and medicine, honestly the thing I enjoy most about being a WeedTuber is all the amazing friends I’ve made because of it. I immersed myself into this community and was warmly welcomed by amazing, loving creators who were all there to support me. When I started my channel I didn’t really know what it was going to be and I still really don’t know what it will be, but I had one goal, to make people happy. It’s what drives me to create even now. Not to be a people pleaser but just to be there when you need a friend, or a kind word. I know I needed that once and I want to provide that for others.
R: And finally, what is the most challenging aspect of being a content creator, and what do you do when you experience a lull of creativity or motivation? What’s your process for transcending beyond that lull?
P: The most challenging part of creating content is overcoming my anxiety. I could make a super cut of all the time I spend before I start my videos just breathing deeply and trying to calm down before doing my intro. Once I get started talking becomes much easier but just beginning is the hardest part. When I can’t get creative or I don’t like what I’m creating I always try to take a step back and ask myself if anything else is affecting me currently that could be blocking my creativity. Normally it’s stress or health related in some way but sometimes I find that creativity is like the tide and comes and goes as it pleases. The more you resist the flow of creativity and demand it comes back to you, the less it complies. So instead just accept that right now nothing sparks your creativity, and relax. When it’s time to create again and the tide rolls back in you’ll be rested and ready to take on whatever awesome project is waiting for you.
R: Peter, again, thank you so much for taking the time to share your personal story and perspective. I hope you continue to resonate with those with similar conditions and expand the awareness of those who don’t. You are a rad human and I’m glad that the cannabis community presented us the opportunity to connect.
P: RJ, I am beyond impressed with your questions and am honored I get to share my answers with you. I hope that those reading this have learned something new and if not I hope I at least made them smile. Thank you so much for giving me this opportunity to advocate and spread awareness for CRPS and other invisible chronic illness’ like it.