Long Covid at Four Years
Who knew that this fourth of July, it wouldn’t just be a mix of oligarchs and fascists in power dampening the spirit of celebrating 250 years of this country? Additionally, it marks the fourth year mark since I first felt my chronic fatigue and thought it was a hangover until the positive Covid test. Additional sinus symptoms and brain fog would join in the days after, but only the sinus ones would subside. I’ve been stuck dealing with body shutting down chronic fatigue and basic thought blocking at its worse brain fog. These symptoms would be diagnosed as long Covid after lasting more than three months from infection and after visiting ten specialists over the first three years. Those specialists finding no known causes of chronic fatigue to be causing this. I’ve chronicled them every year on this anniversary and you can find in more detail in my Year One, Two, Two and a half, and Three updates. I will say three things encapsulate the last year, continuing to work with doctors to find solutions, true acceptance of being disabled, and standing up for my ideologies.
This last year has been different with the individual medical specialists out of the way and finally finding a local long Covid specialist. Unfortunately, his grant money had been cut by the time I had found him by this very administration that claims to want to make America healthy again. So, he has mostly been trying solutions that he found to work for some of his patients during the research and as he reads ongoing research for long Covid. We tried Low Dose Naltraxone, to no noticeable improvement. We are now trying Adderall in hopes that my body will build up endurance for more energy production and to help with the brain fog. Currently, it has seemed more just adding a weekly burnout from doing my day job with it burning energy more. I have another two months, so I will see.
In addition to that, as mentioned last year, I was doing long Covid Physical Therapy and Speech Therapy at Banner’s University Physical Therapy Clinic. They are their neurological Physical Therapists and did a great job at understanding my situation. They treated me delicately trying to avoid pushing me past limits and create Post Exertional Malaise, or PEM, days whenever possible. It was where I was put through a simple balancing test by their longer tenured therapist. First, just feet together, eyes open, and balancing. Then, we did it with eyes closed and I immediately got super wobbly. It was explained to me that this shows how much the chronic fatigue is taxing my brain when removing visual awareness and it is tasked to try to process spacial awareness without it.
On top of this, they pointed out to me, along with the long Covid specialist, that having to take two naps a day to just do a eight hour workday are giant red flags. That the chronic fatigue is the brain not knowing how to stop me from pushing past the limits of my current energy, so the brain does the only thing it knows to do with giving me a swimmy feeling, similar to that of when you drink alcohol, that gradually gets heavier to forcing me to fall asleep with the chronic fatigue. It then is using the energy it was trying to use for finding and fighting whatever the true cause of this chronic fatigue is to just get back to where it was before I pushed it too far. This has the adverse affect of delaying my chances of recovery because the energy is no longer be used toward that for the time of it. With the PT, we hit a plateau and decided to pause until I can find more places to cut my energy usage, which largely is the day job at this point, to keep insurance and income.
Unfortunately, looking into disability, the process is marred and complicated to survive just the application process. Fortunately, I was helped by the Disability Help Group of Arizona to start the process. I got the proper paperwork from doctors and they felt I would qualify. I’d have to get my income to fit under $12,600 during the process and it is unlivable under for what they said could take ten months to three years. So, kind of stuck between a rock and hard place in terms of finding financial aid for this and to allow me to truly rest for recovery.
One benefit of all of this is that I found true acceptance of my situation and disability. Them showing me at Physical Therapy to track my day to day energy usage through the spoon methods and cut out all activities draining me most. This meant cutting back on doing my weekly Every Show Joe Says Go! videos as they seemed the second highest drain only to my day job. Plus, I’ve accepted more that I will not be able to make it out to even the minimalist amount of shows I was trying and pushing to. What that means for my moniker and nickname going forward is a ongoing contemplation. But, I have to say this seems the acceptance of being handicapped I thought I repeatedly found past years, but finally seem more at peace with.
Alongside all this, I started making a stronger stance on my ideological beliefs, calling out and cutting those toxic and unchanging to them. For one, I started cutting out friends who deny science. Ones who believe their gut feelings and pseudoscience over the medical professionals. Most would lump them into the group we call antivaxxers. This is not a commentary on them in cases, but them being willing to risk the health of their friends, loved ones and, in general, others in social settings by not vaccinating is certainly not the caring for one another I expect from the punk rock and ska communities. It is a social responsibility that affects everyone they interact with, yet, they chose to risk the health of all. It has been super disappointing seeing those that after 2020 and with seeing what Covid has done to me I find it further shocking. With social media the only accessible means of contact with many, it meant removing them from my feeds.
Speaking of, it is crazy to me that there are many insensitive to there are no great ways to socialize when dealing with chronic fatigue, yet I’m being told to not use it. I ask for solutions for a disabled from it person and they do not offer any. I continue to believe people do not understand or take the two seconds to look up what chronic fatigue is nor long Covid. They are just telling someone disabled to go do something they are unable to do and they take for granted, going out and seeing people regularly in person.
These ideological stands have brought me drawing ire when expressing how upset I get at those expressing or showing support for those that have those values. One in particular turned out I had poor timing when I noticed they liked a Dicky Barrett, former Bosstone, a self expressed huge RFK Jr supporter and antivaxxer, propaganda post. I will give him the same courtesy he gave me by not naming him here as he did in his own post eluding to me the day the drama broke. I expressed my disappointment with seeing this performer’s like on said post and it snowballed into failure to see it from my point of view. It felt like bullying by his fanbase at a point, more trying to push me into submission than any chance to look at it from in my shoes. I did make an apology and I’m still sorry that it coincided with troubles in his life, but they mocked my long Covid, once again showing a clear lack of knowledge on what I’m actually experiencing, and within a day turned a post private to continue talking shit behind my back. Then were upset when I removed them from my Facebook while I felt blindsided that so many turned out to just be bullies and assholes.
It felt like these others haven’t been as deeply disappointed by musicians the last six years as myself. Seeing ones who turned out to be utter dirt bags, ie Justin Sane, to pushing irresponsible views on vaccines, as Chuck Robertson and the already mentioned Dicky. It is becoming increasingly simpler to identify that kind of thing and figure out more have fallen to idiocracy. Public figures, such as a member of a large band, have a social responsibility to not spread and support harmful misinformation in my book. Maybe they see this performer as just their local boy and friend, but he influences so many. It is highly irresponsible to show your supporters you influence you support these dangerous views.
To address one remark on one of their public posts of being unfriended for just being “political differences,” I will say this. When you support a candidate actively trying to remove the rights of my friends and violently in cases, it’s no longer just a difference of simply opinions. If you want to say you didn’t vote for him for that, it was his no new wars or economic improvements, then it speaks volumes the other things were not deal killers for you. He repeatedly said these things all throughout the campaign. This is on top of the gross negligence of ignoring the negative effects of his first term. It is on top of not giving giving one care for the effects of his healthcare cuts to social safety net programs now starving more and affecting my own attempts at disability support. It is a clear sign of lacking humanity or care for others, so why would anyone want that as part of their friend circle?
Regardless, the good news is I’m accepting my situation, working to give myself more rest to hopefully recover sooner with a specialist trying to help as research comes out, and continue to support and purchase music. You can see it as I post mostly my vinyl purchases to my socials these days. In a better state of mind when it comes to my current health situation with long Covid thanks to this better acceptance. I have even bought a Cheekface ticket and hope my energy will allow me to survive it for some live music. I want to continue to thank those family members, friends, acquaintances, and random others that have understood and stood by me during this health plight. Thank you if you read it all the way to the end here. I do not have an idea when I will finally be better, but I continue to look forward to the day I’m back out attending shows and going on hiking road trips again. Stay healthy and as positive as you can until then my friends.
