Happy Holidays 2020
Hello, kiddos!
How was your 2020?
I quit my beloved job and went back to school.
I assumed I would be laid off. Instead, I was called back from furlough the week classes started. I had already written my tuition check, so higher education it was.
I spent the last few months sitting on Zoom all day. ican.seefor Miles the Cat got to attend, too. No extra charge.
When I wasn’t doing that, I was burning holes in my eyeballs, reading thousands and thousands of flashing words on my computer. And writing, writing, writing.
Fun, Dear Reader, I was not having.
Dealing With Eye Strain
I am very nearsighted, since I was 10. Glasses can be very uncomfortable and cause headaches. My astigmatism went away a couple of years ago (perhaps from posture improvement) and the nearsightedness is the same in both eyes. That evenness has made glasses less bothersome.
I ask the optometrist for three prescription strengths, because the less correction, the better. I use the lightest necessary for my task. I do a lot without them on altogether.
I also keep my computer on “night shift” which reduces the blue light and I keep it dim.
21 Units
To finish without leaving my home, I had to get a maximum unit override. This pandemic can't last forever. I took 21 units. No time to breathe, but less inconvenient than moving to the university, no?
Really, you spend so much time getting dressed and commuting, cutting it out allows for more study time.
Mr. Pennington, working from home, was here to make me lunch.
It was a win-win. Tuition is a flat fee, regardless of how many units you take.
But even all that did not free up enough time.
I stopped swimming in the ocean.
I eventually dropped my ketamine infusions.
Then, I stopped putting the laundry away. I told Mr. Pennington my clothes would sit on the dresser, unless he would like to help. No! Time! Must study!
Too Much Sitting
So much sitting intensely aggravated my spine, especially as I exercised less and less. I went to just weights (dumbbells and ankle weights for leg lifts) and isometrics only.
My sciatica flared up badly, over and over. I had pain episodes for days, with my neck and my tailbone blowing up. F*ck! F*ck! F*ck! This did not happen when I was more active. I had to keep going, so I kept irritating those areas.
My health is so good (have you read my blog?) that pain and exertion do not take me down. Ketamine and virtual reality have helped my brain not get stuck focused on pain. Pain stays in the background of my attention, even if it is bad. My daily Vitamin C shots make me very resilient, too.
I missed only one class. I turned in every assignment on time and did nearly all of the reading, or at least gave it a good skim. I began to figure out, as weeks went by, what was really necessary to read, and what drove me complete nuts.
Exercise for Pain Management
I had to reverse engineer my old exercise routine, figure out what were the moves that kept my back happy? My weights give me lots of strength but my unstable collagen needs more.
Must keep in:
the McGill Big Three (for spine stability)
transverse TRX moves (for the muscles that wrap the spine)
kettlebell overhead press and military press (for shoulder and upper back)
single and one-arm kettlebell swings (for core strength)
push ups
running (my body needs impact)
single-leg balance exercises
I don’t do all of this every day, just need to keep them in the rotation.
Nervous System Stimulation for Pain Management
I began carrying weights around in a bag while on a walk. That was brilliant! Much better than strapping them to my body, which I had been doing a lot of - weighted vest, ankle weights, carrying small dumbbells.
Throwing the weights into a bag got different results. But then, I always loved lugging my stuff on public transportation.
The swinging of the bag forces my brain and nervous system to make continual adjustments and computations to keep me upright.
I find this sort of experience necessary to living pain free. My EDS brain has trouble figuring out what is going with my body. This input helps.
I have found TRX and single-leg balance exercises do the same. The instability forces my nervous system to come to the party. Lifting weights in the same predictable patterns does not engage my nervous system. Isometrics, while very effective for strength, do that even less.
A significant debilitating part of EDS is the nervous system confusion. Body can’t properly manage sleep, digestion, energy, immunity, blood pressure, hormones, etc., so hello profound fatigue and brain fog.
I ❤️ Exercise
For me, exercise is a lifelong journey of learning, experimenting, and improving, something I truly enjoy. It makes me feel that I have agency over my chronically malfunctioning body. Indeed, with exercise, I do. It takes ascorbic acid shots everyday, too, mind you. Been at that for seven glorious years, which is how I got so much better.
I find that in the end, I can get myself out of pain, usually with whole-body strengthening that does not push joint range too far. I’m patient. I keep thinking about it, observing, learning and trying things. I don’t panic. Physical therapy is good for one joint or area. It is not a solution for all of me. I’m the only one living in this complicated body. I have to take charge.
I Did Have To Stretch
I am against stretching for us EDSers. Stretching triggers anagelsia (pain relief) but causes more pain. I am too stretchy to begin with.
Joints should not be pushed to end range of motion for anyone, even if it is super trendy to do so.
People love fake exercise because real exercise is hard. Yes I am talking about Pilates and yoga. For the love of god, stop doing them. Too many unhealthy positions. You will make yourself worse. But it is fun to show off.
Weights and circulation are best for brain, bone and muscle health. Exercise should be hard. You’re grunting, right? You should be. And imagining your muscles growing bigger, which is what bodybuilders do.
I get my stretching by moving well and fully in life. See my “Shop” page for books.
But I found I did need a little stretching for my sciatica. A quad stretch relieves it. I know, weird, but the compression radiates from high on my L-spine. It’s an unusual sciatica, no doubt created from favoring my injured knee and foot. I even lean a little when I sit. Hours of that everyday and after a while, I am in big trouble. Especially when you add an irresistible 10 pound puddy tat who wants cuddles on my lap.
Laser For Pain Relief
I see Dr. Harold Kraft for lasering for pain relief, who I highly recommend.
Isn’t he adorable? He calls his practice the “No Needle Epidural.” Good one. He never makes me feel worse by talking about my pain, which is a treatment in itself. He listens to me, undaunted, all friendly-like, proving it can be done.
It’s traumatic to talk about your pain, if you’ve had a life like mine.
It’s made worse when someone makes a lemon face or offers stupid suggestions, like, “don’t you have something to take?” which really means, “shut up because hearing about pain makes me uncomfortable.”
Dr. Kraft can point out the type and source of pain, which helps me figure out what I’m doing to provoke it, which leads to fixing it.
Back to School
I had moments when I felt so lucky to be doing this and highly stimulated by what I was studying. But mostly, I was in a miserable panic, hoping to keep up, trying to understand this — was it — nonsense? And wondering if I could survive the mental strain of doing nothing else.
My job was active, social and sensual. I loved it. I still miss it.
Zoom school is sedentary, isolating and purely intellectual. Plus not good for my joints. Plus plus reminded me of my homebound life, because I had to stay home and do it. That drove me to tears of anxiety. I hope next semester is better.
I hate philosophy, which I already knew. I find it of questionable use in a world where we have science and knowledge. Maybe we don't need to speculate too hard on what can be contemplated with accurate information and get back to 90 Day Fiance, the best show on television. Hmmmm, what if the people running the government learned about problems and what fixes them? Like with real information? Not ideology, religion, emotion and lobbyists? That’d be f*cking awesome!
Oh, I also hate academic writing. Reading it and producing it myself.
Why say in one sentence what you can say in twenty-five? Run-on sentences, only, please. Obscure the subject and object to sound even smarter. And do not forget to throw in the Ancient Greeks! No paper is complete with a reference to Plato. Where’s the funny story telling and humor? Oh right, they don’t belong.
The Lowest Point
The lowest point was writing on Elaine Scarry's The Body in Pain. I added a “buy” button here to be ironic. DO NOT BUY THIS BOOK.
It seems to me that Ms. Scarry wanted to write some poetry and had some ideas about Marx and the Bible, so she slapped it on a book alleged to be about pain. Isn’t that cute. For her.
For me, it is my life. How nice for her to be blissfully ignorant of pain, in her own world and without empathy.
That book is such a heap of nonsense.
Writing about it was like writing on the sky is blue, not why it is blue, but that it is. Where do you even start? Your paper is too opinionated! My professor told me. Well, her basic premise is utter nonsense, so I did my best.
We know this book is a problem by the subtitle: “The Making and Unmaking on the World”
Wait, what? Pain doesn’t do that.
In fact, if you are in chronic pain, NO ONE CARES. You are forgotten. The world goes on without you. Good luck getting any genuine compassion. Or drugs that you need. You will be dismissed as a depressed whiner and malingerer, except by very few people.
The Highest Point
The highest point was Homer and Greek tragedy. No surprise since I’m a Bravo fan. There may not be much true or useful in philosophy, but there sure is in Medea. Did you see the Betty Broderick mini series? F*cking awesome.
Catastrophe and Mass Tragedy, the Manmade Kind
The best was the class I took was on 20th century catastrophe. You know, the Holocaust, Hiroshima, etc.
I found that to be most relatable, after my life of suffering with Ehlers-Danlos Syndrome. Those horrors comforted me and helped me understand the complex darkness of what I have lived. There are things you cannot make sense of or come to terms with. This, I know. The quality of writing we read was a sheer pleasure. It helped me so much to read other people trying to describe the torture they have been through. It was better than any psychotherapy I have had.
EDS Anxiety
Interestingly, as much as school revved up my anxiety, it discharged because I had a list of assignments to complete (I made one every Friday) and giving myself a ✅ for each was great! Literally, I had an Excel spreadsheet.
Anxiety can just swirl around and torture you with no outlet. Have to figure out how to apply this to everything. Oh, maybe a to do list?
One A+ Paper
I got one A+ on a paper.
I thought I would share it with you here because it was a paper about self-writing, also known as journaling. Hey, that’s like my blog!
My blog has done so much for me, which is why I do it. It totally helped make my brain work again.
Humans have such complex language capacity, perhaps we all need the self-reflection time of writing to manage ourselves, which is what this paper was about. Enjoy!
The End!
I did make it through the semester with excellent grades, may I brag?
I credit that to having spent so much time studying Japanese in 2015-17, which is where I put in the hours, sitting there remembering nothing semester after semester. That got my brain turned on. It was terrifying and depressing until my brain did start to work, but I persisted. Otherwise, my brain would not have been up for hyper-literacy of this intensity. Although it was a big curve getting used to it. Hope next semester is more enjoyable.
I also credit lots of exercise (weights and circulation) and sound sleep. That is how the brain heals and stays healthy. Oh yeah, and those ketamine infusions. They make you smarter.
None of this has been easy. I am willing to suffer and work hard for a better life, not wait around for a magic diet or pill. No time. Life is passing me by.
It takes months for the brain to heal and change. One must keep at it. Have faith. Your brain runs everything. Make decisions that are the best for brain health.
I don’t think enough is said about the neurological implications of EDS.
Nothing is said about how improving cognitive function helps our health. But it does! Above is an excellent book about that. Do buy this one. If you want to understand the incredible devastation autonomic dysfunction and pain have on the brain.
Make your brain work at something! Challenge it! Push yourself! If what you are doing easy or comfortable, find something harder. Force new neural pathways to grow and connect. Study something. Learn to knit. Play hopscotch. Watch foreign films. Read books that overwhelm you. Practice patience and persistence and tolerating new experiences.
Also, improving circadian rhythms (sleep, digestion) has been highly beneficial to me. I will write more about that later. Having your brain fail at regulating your body is a terrific energy drain.
I feel a lot smarter after this semester. And ready for a more interesting life once Covid goes away. Any guesses what year that will be? Maybe I should plan on more school.
The semester was Finally! Over!
This is the morning I turned in my last paper.
I hated that last paper so much. You can’t out-write a bad prompt. I loathed this class, but it counted for two requirements, so couldn’t drop. We read Moby Dick, perhaps the most overrated book of all time. Moby Dick wins for WTF-ness. Poor structure, boring, rambling, weak characters, no dialogue, meaningless. The perfect work for academics to analyze ad infinitum because it is so sloppy it can be whatever you want it to be. What am I paying for?
It wasn’t fun.
It was worth it.
Extremely challenging. Lots of boring misery. Exposed to many new ideas and great writing. Forced to think and express myself in new ways, some I loved, some I resented. Made me a better person.
Time well spent.
Back to the same grind in January. I am dreading it.
Happy 2021!!!
Here’s to a better 2021.
Right now I’m cleaning out my house, re-organizing and re-watching The Affair which is on Prime unit January 11. Just the first three seasons or so. When did that series go off the rails?
And getting some higher dose ketamine infusions which seem A-M-A-Z-I-N-G so far. I did 60 mg the other day. That’s a lot for a drug sensitive person like me, the biggest dose I ever got.
I entered into a detente with with my worst enemy: C1-C2.
During the drug trip, I allowed myself to occupy that spot of my body, to commune with it, to remember a time before that starting hurting, before my life became about trying to live through my neck pain. (My neck/head junction blew up in my early 20s. My knees and feet were first to go, years before.) It was experience of healing and reconciliation. Will it make that part of my body less sensitive? We shall see. It was a promising experience.
Ketamine has been most powerful for trauma, and I will write more about this later. That is in addition to dialing down my body’s oversensitivity to stimuli. A gift! I had stopped getting them during the semester because I can be pretty tired for a couple of days after. No time for that!
I never expect to have a pain free life. I only strive for a less painful, more productive life. I have limitations. I look for ways to lessen them. I have never stopped improving.
I’ll be buried in school until summer, and then . . . summer school! Which will be virtual.
But I have many unfinished blog posts. I’ll try to throw one up now and then.
Take care, stay safe, and do everything you can for your brain.