An insight into my symptoms for the voyeuristic and able-bodied.
An Insight Into My Symptoms for the Voyeuristic and Able-Bodied
Hello again dear friends. There is a large conversation in COVID times about symptoms, particularly in attention to the ongoing health problems those who recovered from the disease can carry afterwards. In particular, fatigue and brain fog caught my eye as they entered the consciousness of the contents of my Doom scroll feed. Another big topic: anxiety. To be clear, more knowledge and more research on these symptoms and their treatment is very welcome in my world. However, this artist reserves the right to be a little bitter while thinking of the years many disabled and chronically ill people waited for their symptoms to be taken more seriously than “tiredness.”
To be vulnerable, my current diagnosis is as follows: Fibromyalgia and Anxiety. I will go ahead and go into some detail about the symptoms and consequences of each.
Sudden nerve pain, from moderate to severe in intensity. Typically debilitating for the duration of the ‘shock’.
Exercise restriction. This is not so much a symptom as a lifestyle change I made to manage the rest of these symptoms but I am listing it here because it seems to shock people. I CAN’T exercise and in my case it does not make anything better for me, and never will. Some movement is good but the most exercise I should get regularly is 20 minutes, 3 times a week, of WALKING level intensity. Sticking to this regimen keeps me living my normal life. When I overdo it, I need a helper friend and a mobility aid. (my wheelchair! Favorite gift of 2020 thus far)
Widespread chronic muscle pain. I didn’t know if you know this, but your muscles are basically most of your fucking body.
Let’s go back to the sudden nerve pain. Sometimes it’s in my neck but once in a while it literally feels like I stepped on a hot sharp nail, a column of blinding pain in the middle of my heel.
Now, every time I go to the doctor with weird joints popping out of place or my bones hurting but not swelling, it’s linked to my fibromyalgia and either out of my PCP’s range of
Tender Points. This is one of the diagnostic guidelines for Fibromyalgia and as the name suggests are targeted areas with increased pain, etc.
IBS. You may be thinking, hmm, that’s its own condition. Irritable Bowel Syndrome, which actually qualifies as a disability itself. And you’re right. But it’s also a symptom of Fibromyalgia. See you in line for the bathroom! :)
Fatigue. This is potentially the most difficult symptom for a ‘typically healthy’ person to understand. It is not simply tiredness. I often ask people to remember the last time they had a bad flu. “It’s the kind of tired where you don’t have the option to have energy, it’s been taken from you by an illness.” That was much harder to sell before COVID but I fear may still not be taken seriously or empathetically. (Psst… just agree to the damn accommodations. If you needed a sign dear reader.)
Brain Fog. This is a monster. It’s like being stoned with none of the fun aspects of that activity, at the worst times possible, and made worse when you stress about it, which is hard not to, because your brain is already foggy. I don’t have kids, so right now, if I have a bad brain fog spell, I do have the option to simply become extremely stoned because there is nothing else productive to be done the rest of the day anyway. I’ve avoided otherwise simple tasks due to brain fog, and powered through others when maybe I shouldn’t. (If you watch my live streams, you may be accustomed to the long pauses. I’m horribly self conscious of them, but I also conversely enjoy creating and sharing my work too much to stop that endeavor.)
Nausea. This symptom comes and goes and is very difficult. Add to it stomach pains and navigating life on the AIP diet (its own series of blog posts), and you have the reason I have lost 30 pounds since my diagnosis. Unfortunately this kind of adds to the invisible nature of my disability. I “look great” to our fatphobic society that thinks it can “see” health.
Painful periods. Did I mention that I had to have a fibroid removed, and my menstrual cycle amplifies all of my symptoms while also adding a slew of unique symptoms to deal with? I’ll give you one specific “odd” menstrual experience of mine that I get every happy 29 days. When I get severe cramps, my feet go numb. If you need me while I’m experiencing this, I’ll be on the couch with my favorite blanket, comfort food, and cartoons. This is pretty much every month and got worse over time, to the point where there was cramping and pain even while I wasn’t menstruating. Eventually the persistent pelvic pain, which at times made me unable to walk, led to a diagnostic procedure where my doctor expected to find endometriosis and did not, so he removed a small fibroid instead. He was genuinely surprised that my symptoms drastically improved after, because in his clinical experience “most women get fibroids and they are nothing to worry about.” I don’t have an actual diagnosis for this one, but other uterus owners with fibromyalgia also experience exceptionally fun menstruation symptoms like mine, so here it is.
Now that’s a lot to list out… Let’s throw in mental health.
So you may think you know what Anxiety means because the word “anxiety” is a universal emotion or experience. Clinical Anxiety is a little different. I would like to mention some of the physical symptoms of anxiety first: nausea, digestive trouble, muscle tension, aches and pains, heart palpitations, chest pain. So, my brain is doubling down on upsetting my poor stomach!
I am a VERY lucky stoner that my panic attacks are not aggravated by continued cannabis consumption. For my brain’s sake, and for fear of horrible side effects like cannabis emesis syndrome, I do control my dosage. (this is a grand claim. Financially, being a disabled artist curtails my consumption of most things to a reasonable level lol.)
I do not think it is by chance that so many artists have experience with diagnosed mental health disorders. I strongly believe that my life experiences had to come out of me as art. Mental illness is a fact of my life and creation is not only my career but one of my coping skills. The art that I create therapeutically for myself is very different from things I create for others to look at. In this way I want to encourage you, reader, to make things fearlessly for yourself. I guarantee you that I have some very strange, very ugly scrawlings that never need to be seen by another pair of eyes, or even mine again. Some of these drawings simply needed to be scratched out and then thrown away for catharsis.
Art is appropriate and needed at every condition of my body. Sometimes I am able to keep up a daily drawing practice. Sometimes I am not. Sometimes my day’s experience of art is my Instagram feed and Real Housewives of Atlanta reruns. It is certainly valid if you are the type-A artist whom Must Paint Daily, but more people would remain artists with more accommodation in mind. With Fibromyalgia and Anxiety, pushing myself past my physical and mental limits is an act of violence against my sick body. My quality of life is dependent on my ability to still work, and the privilege I have to have supportive friends and family during flares where I have to take a leave of absence from working. I have lovely clients who are flexible with me and my body’s needs. (the clients you keep are very important.)
It’s hard to open myself up in this way for fear of the many violences and setbacks provided so readily by ableism. But to try to pass invisibly supports that same structure. So a disabled artist I am, and that is definitely something I am proud of.
I think it is important to close with a nowhere near comprehensive list of things I do and love that are not art related, despite my symptoms.
Gardening. I get a lot of help when I need it, and adapt things as I need to, but even so, a rheumatologist was impressed with me for continuing to garden!
Driving. When my neck was in worse shape I was worried about this one. I still like public transit when feasible because transit infrastructure is a much better shot for the environment than cars, but forgive me that I enjoy an ocean side drive in my Prius on the way home from a medical appointment, or a long drive to see a friend (in pre-Covid times.)
Eating delicious food! I have dietary restrictions but I cheat and indulge and deal with the side effects later. Microgreens and fresh roasted winter squash is DELICIOUS. But sometimes so are animal fries. Look, you read the paragraph about my period symptoms lol.
Learning new skills. I second guessed my own abilities based on the experience of brain fog. I, unfortunately for my anxiety and for my therapist, have a relentless kind of personality that is inherent and so through a process of trial and forgiveness, I continually am doing professional development work and pushing to new goals and crossovers.
Thank you for taking the time to engage with me about the reality of my body, through my words. I understand that you may be feeling a little voyeuristic. After all, you may not know this many medical details about yourself. Please consider supporting my creative endeavors through my Shop, or support my ongoing medical costs through my GoFundMe .
Best wishes xo
