Multiple Sclerosis Relapses: PPMS, what it is, what I do and how OTHERS can help people like ME

I don’t know about y’all but I think I can pinpoint all my relapses to one of three things, a change in my schedule, environment or energy. Multiple Sclerosis is the snowflake disease because our symptoms are different, levels so widespread, names always changing… As a PPMS’er, (Primary Progressive Multiple Sclerosis is the one without remissions, just a gradual decline of physical/cognitive abilities) I am hurting every freaking moment of every damn day. Every single moment, something is wrong. It could be neurosis in my feet, MS Hug is my ribs, left arm numb/tingling, painful itching, the RR issues and stomach cramps, OMG! Let me stop now because y’all know how MS gets with stress and all. *strong arm*

On July 3rd, I relapsed. Well, whatever PPMS’ers call a “relapse” since we’re pretty much always going down. I can’t say I was shocked when it dropped on me either. I had been feeling down for a couple of days with MS exhaustion and couldn’t shake it. I know it’s a “relapse” when I have the exhaustion, neurosis, hug, walking/standing BEEN gone plus plumbing pain and, and, AND I start thinking negative thoughts and hoping for death. *deep breath* Look, I ain’t got no reason to lie and I will not give too many examples because it’s just July 4th. That means it is day ONE of recovery for da lil handicapped homie. If I go too deep into examples, I’ll stress my gah damn self and… #YouGetIt. My relapses are when reality catches up to my mind. See, as a PPMS’er, I’m THRIVING over this incurable disease by pushing my thoughts/imagination/mental beyond the pain, symptoms, anxiety, fears. I defeat Multiple Sclerosis by OVERstanding that wellness is the soul, mind, heart and body. I don’t have healthcare because the last time I saw a neurologist (paid out-of-pocket), her cheapest “medicine” was Ocrevus. Ocrevus was $45k for ONE shot but she said, “you only take the shot twice per year.”

*ROTFLMAO* In other words, BUNCH of emojis and stuff.

Nope, ya boi ain’t got that lying around. PLUS, I’m one of the MS’ers that had bad experiences on the first MS drugs and got worse.

I do the whole Eastern Medicine-yoga-meditation-tea-sage-DIET-vitamins and more lifestyle. *makes a muscle* I manage TF out of everything with patience and stuff the old school used to do. Basically, my pain tolerance has increased like a MUTHAFUGGA and I focus on prevention. One of my favorite mottos is the hashtag, #MindOverReality because I KNOW it, LIVE it and THRIVE using it more than I did with the healthcare, pills and *gulp* other shit. Yes, it is absolutely possible to use your mind and elevate above the discomfort, symptoms, pains, nerve damage… Once you hit Primary Progressive stage, doctors are chunking medicines meant to manage your MS because it can no longer be stopped, paused, slowed, blah blah blah. Start living with it all everyday and you adjust to it, keep going. At that point, it is waaaaaay past the physical stuff, it’s punishing your heart as you think about a shitty future of more MS stuff. It’s wrecking your mind as you remember all the stuff you USED to do. It’s killing your soul, your will to live, your drive, hustle, everything. You/We/Me/Us MUST control our imagination and mind as the FIRST defense to MS and LAST refuge vs MS.

Sooooo….Yeah…. I’m down that rabbit hole again and drug y’all with me. MY relapses as a PPMS’er are directly linked to changes in my schedule, environment or energy because it disrupts my mind, heart or soul. The body is pretty much a negative everyday so when one of the other three go, I’m relapsing. With quarantine, coronavirus, being #sickAF, I’ve gotten used to having a house full. My kids home for homeschool since early March and school out now. My RN wife ducks hospital shifts because I’m #sickAF. Everybody always home means da lil handicapped homie is never alone so I got used to the environment and energy. I’m doing Eastern Medicine, as needed, whenever and I can manage my PPMS. Move me somewhere and I can’t do my Eastern Medicine as needed, whenever and I’m relapsing. Reality has caught up to my mind. I have a “schedule” of practices and stuff. If you disrupt my “schedule”, I am relapsing because those practices, waters, etc. keep my mind above the MS. If you drop a negative ass person in my area, you are setting me up for a relapse because that negative energy, those negative stories, that negative person is drawing out my fears and anxiety related to MS and it getting worse. Sure, my routines and practices have strengthened me and made me able to withstand more but that is the key to my relapses, changes in my schedule, environment or energy.

July 3rd, I woke up with such a strong, negative energy from being alone (kids at Grandparents and wife working) that I wanted to fight somebody, anybody. I’m highly sensitive to energy because I devote so much energy to controlling my mind and such. My energy was off. I did my Gratitudes and felt the negativity, aggression, anger as I wrote and posted to social media. Thankfully, I’ve reached a point in my wellness and self-care that I recognized what has happening. I’m grateful AF that I have things to do to help myself when MS starts POPPING.

What I did:

I did rounds of my usual, yoga, meditation, sage, tea. I sat outside in the porchgarden, smoked some damiana & rosebud joints and tried blogging. None of it was relaxing me, passing the storm of negative thoughts and as such, symptoms kept coming. I cried and rocked myself on the floor, in the bed, on the toilet, in the kitchen. I fell asleep with my head on the kitchen counter, fell a few times and tried sativa, indica, mixes, shots of brandy. Nothing worked. I felt worse and worse. Finally, I decided something drastic and drove my wheelchair’d ass the few blocks to the neighborhood pond and chilled with a paperback, spiral and pen. When I returned home, it was 3hrs later and I definitely felt better. I could breathe easier, thoughts slower. The pain was worse due to the heat and sun but I could think MY thoughts, notice gratitudes and appreciate little things that were keeping me alive. The ultimate thought, notion, sight that I credit for lifting the darkness was a single, yellow flower. Here I was, struggling to hold it down and I spot that single, yellow flower in a sea of green grass. I spent time searching for any other yellow flowers and saw none, zip, zero, zilch. It was THAT yellow flower and me. I didn’t know it’s story. It didn’t know mine yet I felt better. Against all odds, WE were trying to grow past everything and everyone else. I went back out to the pond later that July 3rd. I didn’t find the single, yellow flower and it saddened me at first. Then, I thought, “It’s just me huh? Fuck IT and Multiple Sclerosis. I refuse to slide back into negative thoughts. I got cha little, yellow flower. I appreciate your energy and inspiration.”

*straight face* Yes, I did. *stomps foot like a kid* I DID TOO! Hell, I kinda laughed at myself for talking to a little, yellow flower while neighbors drove by wondering WTF.

How to Help People like ME…

After all this, I know I can’t be the only one feeling the same way. To be for real, I need help like a MUTHAFUGGA during relapses. The worst case? I/We go into a depression, completely shut down and stop the self-care routines we’ve developed. For all of us, Tribe of the #sickAF, depression is the worst case scenario. On these days, we really need someone to sit with us, chill with us, listen to us. We may not talk for fear of scaring ourselves into feeling worse but we NEED to and may start. When the shit comes out, (It will. *folds arms*) do NOT judge me, tell me “how great things will turn out” or “calm down“. WE know all that. I post all that. We need someone to LISTEN to all our concerns, LISTEN to our symptoms, LISTEN to how tired we are. Shoot, if the tears fall, let them fall so we can get this out and move on. We know YOU can’t help with the pain, nobody can at this point but jeeeeesus…. we NEED to get it out. Nope, changing that schedule, environment or energy is not an easy fix once the relapse hits. Improving the energy is BEST, most effective and efficient of the three. Let us talk but help us laugh. I don’t think loved ones and caretakers understand how much we DON’T say on the regular to prevent bringing THEM down or starting arguments over how bad it is. Once the relapse is here, it is too late and WE should start talking. YOU can help by meeting people, #sickAF like me, on our terms, in our places, doing our kind of stuff. Let us TALK while you LISTEN but *pauses for dramatic eye contact* Do not allow yourself to get sad with the reality of our disease progression or management practices. Yup, we’ll change the subject, lie about how bad it is and do anything to keep it in but don’t let us. Don’t let us internalize more stress, more fear, more anxiety about old symptoms, new pains and unknown yet foreseeable disabilities. That is how you help people, #sickAF like me, get over a relapse.

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