Ahhhh… Finally, I’m blogging about some of the ways that I manage my Multiple Sclerosis symptoms and leaving it all in ONE collection. If you are new to the life of chronic illness, chronic pain and TRUE 24/7 management of symptoms, I #Salute TF outta you. Welcome to the wild side homie, Sister, Brother, King, Queen. We got some things to chop up this post. If you’re already familiar with me, my style, steelo, swag, perspective, then you know some things will sound/read redundantly. Come one MAN/SIS! Yoga? Meditation? Gratitude? I want this CLEAR from the START, prevention is the KEY to my thriving with the Incurable Trinity (Ooooooo! Remember THAT term? MS, UC Spondylosis are my Incurable Trininty.). I have spent at least 30min every day performing yoga/meditation routines for just about a year. Is there a difference? Dawg, I’m seriously about to shed a tear just thinking about how much better I feel. Really, I am stronger, more patient, more mindful, more present, more forgiving, more… I’m sure even a newbie to my blog OVERstands where I’m going with that one. Daily routines of exercise and mindfulness are magnificent tools of preventing MS attacks, MS symptoms, MS afflictions and whatever else you wanna call the shit of MS. Again, prevention, Prevention, PREVENTION is everything. I don’t have healthcare for several reasons (stares at price and effectiveness). Without going too far down the rabbit hole, I took MS drugs for 6months and my lesions almost tripled over that 6mo span. Tripled. I was hospitalized for pneumonia TWICE in that 6mo span. I was hospitalized for suicidal thoughts and mental confusion. Yooo, don’t let me get started on the medical bills that ushered in a bankruptcy. If you want the complete story; it’s here, Why I Don’t Take MS Drugs (The Ugly Side of Beautiful).
Now, without further adieu, I present my comprehensive list, as an interview format, performed by my damn self because… Well… What else did you expect?
Why choose the name, “Multiple_Sclerosis_Outlaw”?
The name “Multiple Sclerosis Outlaw” is part of my healing process. It means, I will do whatever is necessary, to live my life, my way. It is a constant reminder of everything that I have survived doing shit MY WAY. I chose it because I’ve always loved Doc Holliday, in the movie and American stories. He was a dentist and member of Wyatt Earp’s vigilante Federal posse and although afflicted with tuberculosis, participated in the gun battle at the OK Corral and lived a life of women, booze, gambling and danger. That is how I envision my own days, squabbing with Multiple Sclerosis, coughing to the end, loving my lady, giving the middle finger to anyone not supporting my decisions and lifestyle. Believe it or not, even typing that scenario gives me goosebumps, jitters and energy!
How do you treat/heal yourself?
To go head on and get to the point, I practice Eastern Medicine. Basically that means, I throw ALL the ancient techniques, herbs, lotions, water, etc at the Incurable Trinity that I can find. I’m using teas for special circumstances AND as a coffee. I have alkaline water for symptoms. Kratom, cannabis, sage, everything. One of the lessons I’ve learned along my journey is that the old ways work. Wellness is more than pills and awesome healthcare. Wellness is mind, body, soul and heart. If one goes down, the other three work harder to keep you going, like the 5 senses. MS is trying desperately to take my body. I don’t have the money for the doctors, chemotherapy and various medications. I don’t have faith in doctors, healthcare, drugs or other stuff either. Over these last two years of experimenting with alternative options, I know that faith/belief play a monumental role in healing. If you think medicine will work, it probably will. If you think, it will not work, it won’t. I have dove into this subject earlier so I’ll leave a link for those who are interested.
Exhaustion is not my worst symptom but it leads the pack in being by others. “Yo Outlaw, What do you do for exhaustion?” Changing my diet to Pescatarian was the first big step to managing it. I’ve stopped overeating and spend considerable energy/effort making sure I don’t eat the wrong things. That helps with preventing exhaustion but when it hits me in the kisser, I reach for my yoga mat. I have a set of poses that I beak out to stave the sleepiness and desire to collapse on the floor. Exhaustion isn’t easily defeated and often I come back to the yoga mat for a 2nd or 3rd round.
This is tricky. Spasms and cramping are daily complications of MS, all day, every day, waves and spurts. Most of the time, I can manage it all using, you guessed it, yoga. It is a preventative step, not a quick fix. The worst spasms were the charley horses that I would get nightly. After about a month or two of consistent yoga, I don’t get those charley horses anymore. If my spasms are getting violent, harmful or disrupting my day, additional rounds of yoga seem to settle me. Water is often overlooked but I’m telling you, you’d be shocked if you knew how many times I can trace my spasms and cramping back to poor fluid intake. On those bad days, I’m drinking water, eating water and damn near sleeping water.
The MS hug is a common symptom of mine. I’m a heavy cannabis smoker (pipe only!) and I tend to worry a little about the repercussions of coronavirus and the MS Hug. For the Hug, I do chest yoga poses and it does help but meditation is mixed with it. I meditate, struggling through those initial breaths, and USUALLY, I’m doing better within 20min. When meditating, I use my own healing mantra of Heal-Reduce-Rid-Repair. FYI, I do the 6-3-9 count for meditation, breath in 6 seconds, hold it seconds and release over 9 seconds.
Yup, yoga here too. I can not stress enough that prevention is key to thriving with this disease. The numbness/tingling doesn’t seem to last near as long as it used to since yoga/meditation has become integral to my morning routine. When it does swing back and refuse to go away, I just rock with it and ride it out.
SNAP! Neuropathy is one my archenemies. Shhhhhiiiiid, as of this post, I am dealing with neuropathy right freaking now, pain of 4 of 10! What works? I’m a fan of heating pads and foot massages for the neuropathy. I have a heated foot massager that I use to “break the monotony of pain”. What I mean is, the issue does NOT go away but the massager gives my feet gives me a “break” or a different feeling of pain. Yup, still hurts like hell but it’s a modified pain. It isn’t so intense and spreads the discomfort around. I switch back and forth, on and off the massager until I’ve achieved some relief.
Oooooo. Sorry folks but this is another one that I haven’t figured a routine of relief for. It was much more prevalent in the earlier years of diagnosis but I rarely get these anymore. I attribute that to living with less stress. As I’ve grown accustomed to my disease and condition, I don’t freak out as much and the itching always came with a stressful situation, high bills, wife not talking, no cannabis, need a drink, out of cannabis, etc.
BMs, incontinence & personal plumbing
I have so many issues with my plumbing that I don’t know where to start. Wait, yes I do. I’m starting with the squatty potty. Convincing my body to produce a bowel movement is a WASTE of time. In addition, it seems I’m always stuck on going too much for #1 and bloated than a MUG. I should be used to this life by now since I’ve had IBS since high school. I’m not. I haven’t on account that I flat out don’t want to. The squatty potty puts you in an improved angle to help relieve that pressure and squeeze of that shit out. *winks* I’m for real! I didn’t believe it at first but I am a true believer now. It is soooo beneficial that I take my squatty potty to OTHER bathrooms! Want another tip? Alkaline water gets the bowels moving and exiting your backside. No alkaline water? Try room temperature water with some fresh juice.
Stop it. Stop that right now. Don’t you dare tell me that marriage isn’t affected by MS. I gave my marriage a strong boost by taking up Gratitudes as a daily practice. The art of stopping, recognizing what I’m grateful for and addressing it, respecting it, appreciating it has seeped into my perspective and everyday habits. I can’t stop showing and talking about stuff that I’m grateful for. My wife noticed that change and it shows in how she treats me. I’m not burning through the day sad about what is happening to my physical form or worried about what will happen. Naw playa, I’m too busy being grateful for everything in front of me. Our conversations are different now as we chop up about a wide variety of topics instead of MS, bills, and healthcare decisions. Being this grateful, we talk about movies to watch with the kids, chores that are done around the house, blog posts I’ve written, everything. No, that was NOT the case during the first few years. I was bummed, depressed and dreading life with MS. I hated seeing and feeling myself fall apart. It was all I could do until Gratitudes started. Now, I see and feel so much more. I can enjoy what’s going on around me without tripping about how much time I have left to be “normal”.
Daddy. You yell a lot less. It makes it easier to talk to you.My 5th grader on my improved patience and OVERstanding.
The relationship with my kids has improved due to Gratitudes as well. Hell, they’ve grown due to Gratitudes! I started having them keep a Gratitude Journal and we spend quality time working on it every week. It might be a prompt, chore, activity, ain’t no telling but we doing something TOGETHER. I write them in their Gratitude to reinforce messages and encourage participation. With our communication and relationship stronger, the stress of life is less. They help me around the crib and actually enjoy helping me around the house!
Much like the marriage and kids, MS will wreck shop on your relationships with friends/family. My solution? *sly smile* You damn right. Social media! Bet you didn’t see that coming huh?! Look, there is no sugarcoating this fact, friends change before you got sick and after you got sick. Gratitudes certainly helped by keeping me focused on the good of my remaining friends and potnas but that wasn’t enough. I missed hanging out. I missed the text message group chats. Enter social media. I began reaching out to other MS’ers through apps and social platforms to build new relationships, meet new people that shared my experiences, gain new insight and picked up all kinds of tips, pointers and testimonials for treating my MS. Do I miss my “old crew”? Dearly but I am strong enough and grateful enough to appreciate the “new squad”.
No sir. Nope to the madame as well. I don’t work a regular gig anymore due to handicaps and other MS limitations. My first YouTube videos were dedicated to championing entrepreneurship and I still sit firmly on that mountain. “MS’ers should start their own business because you’ll never fire yourself over health issues and you’ll best find energy to pursue your own dreams.”
Depression & Mood Swings
This is something I juggle on a regular basis, depression, anxiety, stress, all the other negative emotions associated with MS. My greatest weapon vs this hot garbage of emotional baggage is… *drum roll please because it ain’t yoga!* MANTRAS. I have personal mantras that I repeat to myself all throughout EVERY day to prevent depression, mood swings, anxiety attacks, etc. I smudge my ass off too! I use white sage to clean my negative bullshit, blue sage to invite healing, cedar to invite good spirits and black to send my meditations wherever they need to go. Sage has become so serious that I keep a few sticks under my motorized wheelchair.
I’ve written so much about yoga and exercise that I’ll just leave one the many posts.
I know I sound like a broken record buuuuuut… Yoga again and yup, you’ll see it again. MS attacks the central nervous system folks. Let us keep it real, keep it 100, be honest. There is a high chance that your balance will be a casualty of war, one of the FIRST victims to fall in the subsequent battles with this disease. Daily yoga will help to slow its progression. I get it. You’re hurting already, balance is bad, how are you supposed to do yoga. Exhausted as you are. You pee too frequently, fire on feet, relationships have you tripping and stressing. I get all of that. I wrote a self help book about it all but then I did yoga. It took a few months to transition into daily yoga but I started daily, seated-specifically-for-the-handicapped yoga. I felt so much better that I accepted a push-up challenge from my healthy friends. I WON. I accepted their sit-up challenge and won. All this, I did while doing my 15min of yoga every day. It is 10-months later and I can walk (call it ugly shuffle) a few steps. Yes. I am saying that yoga has improved my balance just a little so that I can stand alone and shuffle a few steps. I can march on my best days!
You’re gonna have to trust me on this one. This is one of those off-the-reservation type of options. Tinctures are my way of calming down a tremor. Tremors look, smell, sound, feel like a seizure. To a passerby, you need immediate medical assistance for the shaking, eye-rolling, choking, inability to speak. For you/ME, it gets scary when the choking starts. The other stuff, eyes, can’t talk, you can handle, although it is painful. The choking is a concern. I’ve had a tremor during a Neurologist visit and she didn’t know how to help, choosing to stand idly in confusion, hurling questions my way about illegal drug use. I treat myself with tinctures for these episodes, single drop, under the tongue, held for as long as possible. It is going to BURN (Oh yeah! Tinctures are cannabis-infused everclear.). As the burn subsides, the tremors dissipate. When I don’t have a tincture, I drop CBD into whatever hard liquor I can find. This is essential to my daily activity so I’ve taught my 4 kids, aged 17 -7, how to administer tinctures to me when I’m unable. No lie, they even know how to mix the CBD with a shot of vodka.
Me? I’m the middle insomnia type. Mine comes from the general pain of MS, back jacked up, neuropathy in feet, constant issues with plumbing, doesn’t matter why, I am UP. I have yoga routines for insomnia that usually work; I just don’t do them. I have teas that help; I don’t do them either. Insomnia stopped being an issue when my passion of storytelling and purpose of helping others were identified. Now, when I’m up, I have so much to do that I usually blaze an indica strain of cannabis and get on with it. I crash later in the day but in my eyes, it is absolutely worth it. The entire house is mine, t.v., PS4, good laptop, kitchen, kids’ snacks, all of it. (Damn right, I’m eating their snacks and watching as they blame each other the next day!)
Painful, achy days
Ever heard of kratom? BOI, is it nasty and messy like a toddler! Does it work? You doggone skippy it works. For general pain, I take kratom by putting a spoonful in my mouth and guzzling TF out of water. I mean it. I guzzle water, breath and go right back to guzzling. It takes some practice so I’m leaving my earlier kratom post link here:
Nope, no push for yoga here. Meditation is my solution for brain fog. It is yet another daily-activity-not-quick-fix. I’ve gone from exhibiting brain fog 1-2 times per week to 1-2 times per month and I attribute this is meditation. It was not immediate but a gradual improvement that I didn’t notice; someone else mentioned it. When I began meditating, I would set my timer for 5 min and peek at the clock every minute or so. No matter how hard I tried to focus on my 6-3-9 breathing, my mind would kidnap my imagination with thoughts of negativity. 10-months later, I no longer set a timer at all, prefer facing East, intentionally open/close my hands and smudge with expectations of something happening. Meditation has strengthened my mind and heart.
Issues w/ sex
Wow. I have poems and posts dedicated to Multiple Sclerosis and issues with intimacy. Before you roll YOUR eyes, yoga did help; however, Gratitudes are the rock star. Gratitudes force my mind away from the stresses of MS, the cloudiness of the future, the reality of unemployment as I build this brand/business/blog. My body rewards me with a Rick James type mentality and obsession with sex. I don’t just feel better after sex, I AM better after sex. I shake less, more patient, maaaaaaan, check out the post!