Top 6 Things Going Wrong: Multiple Sclerosis and the Pandemic

I talk a LOT of shit for a dude in a wheelchair. I really do. I talk that because I know there are others like me. There are others out there struggling to deal with a chronic illness, sacrificing what health you have, taking legit life/death chances through diet and lifestyle. I talk that shit and represent the #sickAF. If you rocking with me, I hope you OVERstand the intent and authenticity of this blog. Gratitude, Attitude and Passion are my mantra to combat depression. I’ve developed sincere routines that protect my “inner G”/energy that include meditation/yoga/exercise, tea/water, herbs, kratom, cannabis, sleep, DIET and much more. As long as I’m running on schedule, following my routines, hydrated, etc., I am good to go. When I have to “freestyle” my day (that means making it up as I go), I take serious steps back into the world of pain, symptoms and inconvenience.

That is exactly what the quarantine, covid-19, pandemic is doing to me. It is forcing me out of my comfort zone of stability, expectations and basic movement. We’re almost 6 months into this new normal and try as I will, try as I might, ya boi just can’t seem to get it it all back right. For one, finances are funny and credit won’t get. I spend the lion’s share of my day working on the blog, brand or business (mycow – Managing Your Child’s Online Work). I write ebooks and self-publish as well. (In a perfect world, I am an author that blogs. *bows*) NONE of these are true money-making activities! Sure, in the looooong run…. One day, blah blah blah. For now, none of my hard, entrepreneurial work pays bills. What I would do for immediate cash is substitute teach. Yup, wrote a blog about being a substitute teacher too, Substitute to the S.T.&R.S. The problem is that there is no substitute teaching during a pandemic and remote schooling. I’ve adapted to what I can afford to do but that directly impacts my immediate health. On a daily basis, I’m slipping, slipping, slipping. It is wearing on me. I do my Gratitudes, practice what I preach and keep it positive but it is draining. I do believe that the reason I’m still going, still pushing, still hunting goals is a dedication to self-love and self-worth. As the pandemic rages on, my simple existence interrupted, my personal pain and discomfort are amplified in the following ways:

Energy

Wow, energy was the first sacrifice. I’m short on vitamins (D3, B12 and Magnesium to be specific) and energy pretty much organized a boycott within me. 4 months, no B12. 3 months, no D3. 1 month, no magnesium.The lack of energy affects everything else. I don’t wake and move as early. I skip a bunch of meals. I don’t drink my water and tea. I’ll do my yoga/exercise but the consistency is off, going hard one day, then light as ever, hard, light, a few mediums. What makes the energy issue complicated is that I’m NOT sleepy, just exhausted. I fade in/out of naps, from sitting on the toilet to laying on the floor wherever I am. After 15-30min, I’m usually back up and pounding the walkways towards DreamLand but nowhere near the voracity and thoroughness. If I was using numbers to explain, I’m at liiiiiiike…. 70% energy levels. I start with 70% and it drops as I lie there in bed; even turning over costs me something. Typing on my phone, researching, reading, responding to texts, messages, emails, checking applications, all of it burns energy and I haven’t brushed my grill yet. *sigh* I know I had more energy months ago but the weeks are noticeably lower too.

Tremors

Tremors have been busting my butt lately. I usually get Nystamus tremors, eyes roll and jerking movements, and Resting tremors, full body similar to Parkinson’s disease. If I’m in my wheelchair, tremors make me fall OUT the chair. If I’m on the toilet, tremors cause me to fall OFF the potty. I don’t drive because I had tremor and damn near wrecked. But are they painful? Oh my gawd, YES! I’m left dazed and the pain is there after it stops. I don’t get tremors that much yet, 2-3x/day so far, but their impact is BAM! BOOM! POW! Nope, I don’t lose consciousness. Yup, I hear everything and see whatever I’m facing. My eyes roll, shaking uncontrollably and it takes a genuine focus on breathing to breathe. I don’t know why the loud choking, gasping and slobbering takes over but I’m pretty sho it is because I get nervous and panic with the first gasp. *shrugs* I be scared y’all and I meant to write it like that because I honestly fear this is IT.

Pain

Where do I start? Pain is everywhere and I’m chopping real, actual pain. The neurosis in my feet is the most persistent. Doesn’t matter if I’m resting my feet on the wheelchair foot pedals/bar, feet on floor, feet raised, laying down, none of it matters. The pain feels like my feet being crushed in a throbbing sensation. Can I walk on it? *winks* I’m disabled so I don’t really walk anywhere anymore but I know what you’re asking. I’ve wall-walked with it but only to get to the RR. What’s the pain level/intensity? Maybe a 5 or 6. It is enough that I don’t eat, instead I drink vodka. I get excessive pains in my hands, ribs, chest, and neck areas. (SOME things hurt regularly, legs, thighs, stomach so I’m not including them here.) My hands have a dull vibe humming and centered on the interior. The pain is high enough that I instinctively curl my hands; stretching increases the pain. Crazy to me is that there is NO pain on the outside of my hands, and only 1 fingertip hurts. Weird huh? Spondylosis kicks in but that’s another one I consider regular. The aching in my ribs, chest and neck could be the fabled MS Hug but it’s different. The MS Hug is crushing, similar to the foot neurosis, while this pain is an uneven distribution between the three. I literally feel like I’m being poked hard in the ribs, right side.

RR issues

My MS started in the stomach. I’m nobody’s doctor (I wanna be a shaman and it’s coming.) but I know MS started in my stomach. I was diagnosed with IBS, Irritable Bowel Syndrome, in high school, Ulcerative Colitis fresh out of college. I blog about different processes and methods to treat chronic constipation and inability to urinate. The reason RR makes the list is because I still do all that stuff and it hurts! Cramping, convulsing pain that feels deep behind my bellybutton. It’s parallel to the pain associated with explosive diarrhea or throwing up except nothing is coming out either way. I’m able to have a bowel movement for several days in a row but there is no relief from the cramping pain. You know when you eat some beans, get gassy but the fart/poot isn’t hitting yet? That describes the discomfort I experience but sprinkle in a level 2 stomach pain. This mug screws with my day by keeping me on the toilet for 10-15min sessions, multiple sessions, every day, ONE actual bowel movement. Waaaaaaaack. Walking around (Well, technically rolling around), feeling like you’re about to fart, stomach cramping is for the haters. When I do actually have a BM, the pain/bloating subsides for a fraction of the day before building back up within hours and I’m starting over.

Ticks

I stutter and repeat myself quite a bit. I spin donuts in the carpet from wheeling in circles, over and over as I remember what I was supposed to be doing. Randomly, throughout every day, I realize that I’m balling up. Wheelchair, in the bed, on the floor, sitting on couch, I will ball myself up to the point of falling out of whatever I’m in. Not trying to brag but ya boi has earned his flexibility by practicing meditation/yoga/exercise on a daily basis. When I ball up, I can lay my head in my own lap, feel comfortable, and stay like that for long stretches. I even sleep like that for a few minutes at a time. The ticks I’ve developed come and go. When I’m doing everything right, eating, drinking, exercise, mindfulness, the ticks are extinct. Now? They are exploding and multiplying. I’ll start drinking cups of whatever and leave them all around the house, unfinished. I’ll slip into a tick of eating a handful of nuts for a meal, trying to fart in the middle of people or making ugly faces as I fixate on some fierce pain in my mouth. The ticks are a great example of uncomfortable. I feel uncomfortable. I give off a vibe of uncomfortable. It changes the energy in the room because people will wonder/worry about ME being uncomfortable. Of course, THAT makes me even more uncomfortable and increases my ticks.

Dark thoughts

This is the most influential negative to the quarantine, pandemic, school closings, everything for me. Without my “equipment” of diet, herbs, fresh, GREEN veggies, alkaline water, my thoughts are going dark. I excessively worry about new symptoms, the length of old symptoms, complications and the dreaded prognosis. The cycle is addictive and draining. My patience goes down to just about zero. I struggle communicating with my kids behind this short patience. I start to rationalize life choices in a negative manner and actively attempt to sacrifice my own health in the honor of “family provider”. My exercise is impacted in that I don’t work out as long behind thinking, “it doesn’t work.” The dark thoughts keep me in bed, festering with apathy and hopelessness. I stop talking about my progresses, Wins, and positive results. The mental part of recovering, maintaining and preventing is critical to an individual because it lays the foundation for wellness. “If you think it, you can achieve it.” “Believe you can do anything.” “All actions start with thoughts.” These quotes are examples of the basic power of thought on health and wellness. If anyone, not just me/us, is thinking negative, it will slow down healing. That is where I am. I’m constantly gauging, spending more energy on being positive. Yeah, yeah, yeah, I do my Gratitudes and work my system but the dark thoughts are there. I write and post Gratitudes, find the motivational picture, inspirational meme and pursue a better mindset and attitude. All of it seems to be useless when you’re stuck on self-pity and fear of the future. A regular conversation with other people ends with me taking the entire talk out of context and getting defensive. If I call someone and they don’t answer, I think they’re intentionally avoiding the sick guy. If my wife/kids don’t hear my question or statement, I think they’re ignoring me. If a new symptom starts, I think it’s permanent. If something goes wrong, I think, “Well; when it rains, it pours.” I work at staying grateful, focusing on priorities, being positive but facing an onslaught of pains, issues and dark thoughts deteriorates my inner G/energy and corrodes my stability.

It makes me question my own “transformation”. I’ve written about changing your mindset. I harp on changing your mindset. I scream about changing your mindset. I lead others, like me, to change their mindset based on building systems and routines. As I struggle with adapting to the new normal, I genuinely question have I changed or am I just overdependent on systems and routines?

Previous Related Post: MS & Imagination: I’m bout to BLOW up!

2 comments

  1. I appreciater your vulnerability. I know this disease can take you to a dark place. Your positivity inspires me. Praying for you and your family!

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: