Maaaaaaaaan, I work my ass off to stay positive despite failing health and poor finances. I start everyday with things I’m grateful for and spend hours trying to find positive stories across social media. REALLY, hours I say! It’s lonely AF teaching myself to be optimistic so I dive deep into positivism. I write about positivism. I dedicate time to positivism like it’s a religion. I journal, chart, post and sometimes lie about being positive because I want to be one of those happy people. You know those “happy people”. Optismistic AF? I mean always, ALWAYS, living on the bright side of everything. I want that. I want to be an optismistic person because when you rock shit like Multiple Sclerosis, Ulcerative Colitis, Spondylosis, live with crappy healthcare and generally struggle with keeping a job… *sigh* Well, my reality is different than most people. In my personal world of perpetual degrees of physical pain, everyday I wake up to hurt. I rarely exercise an opportunity to talk about the trauma associated with my Incurable Trinity of Diseases. There’s no one on my team or squad equipped, interested or willing to talk to me about it. This is the negative side to a life of positivism, the “bad days”, the proverbial ugly side of beautiful. It’s the dealing with everything alone because you’re the positive person who supposed to be confident it’ll work out.
To truly attempt a description of bad MS days or a relapse, I’m thinking I should leave a detailed list of afflictions that occur over one day.
1. Pain in neck affects how I hold my head all day. It’s more a stiffness than crick.
2. Balance so bad I fall off toilet.
3. MS Hug affects how I breathe. I’m staunch supporter and believer of cannabis as a medication for various ailments. When the MS Hug is rolling, I cough like a pneumonia patient and sometimes vomit.
4. Urinary Incontinence. I’m using the RR 2x/hr. What really sucks is that nothing comes out 70+% of the time.😑
5. Balls of feet and curve of foot have separate, simultaneous pains. Balls are on fire. Curves feels crushed.
6. Exhaustion. I can go days without eating because I lack the energy to chew food. My stomach growls loudly and bangs around but I’m just too tired to solve it.
7. Temperature sensitivity. I am either burning hot or freezing cold all day and night. Sneezing hard like allergy season.
8. Floaters and heavy blinking affect my vision. Floaters are little stars of light that I see everywhere.
9. Uncontrollable eye rolls. Yoooo, literally my eyes roll up for seconds at a time and people can see me trying to roll them back down as I bob and sway.
10. Brain fog and stuttering. This is wiiiiiild and embarrassing. It’s medical name is cognitive fog. I can’t remember words when talking, forget my points and stutter a lot.
11. Legs… Ok, everybody and their momma can see my spasticity and mobility issues but on bad days, DAMN! My legs will aggressively rub together and my knees will bang each other. It’s painful and freaked me out the first time. It only lasts minutes at a time but it’s one of the few symptoms that I don’t have a plan for relief. 😭😭😭
12. Back… Spondylosis is degeneration of the spine so I’m rocking 3 bulging discs and 2 herniated discs. When I’m relapsing, the inflammation gets serious and results in sudden loss of movement. I feel cords connecting my head, neck and shoulder. Those cords are agonizingly tight. Every motion I make requires considerable thought because I’m terrified I’ll slip a disc. Again.
13. Loose Booty. I don’t what else to call it! It only hits in the car but manifests as feeling like my booty cheeks are extra, uncomfortably loose and feel “open”. 🤤
14. Bloating. You’re all familiar. That basketball in the stomach comes with constipation.
15. Depression is most torturous symptom of bad days and relapses. It hovers when a relapse stretches into 3 or 4 days. It rains if I haven’t pulled myself outta it before a week. Let a solid week of bad days swell up and it’s official, I’m depressed. I worry that how I’m feeling will be the new standard. I’m scared to death that I’ll have to adjust to a shittier quality of life. I cry on these days. Hard, ugly, loud sobbing because this is happening so much faster than I can grow and accept.
I blast positivism to combat this. I attempt to exhume positivism as I speak, write and create poetry. I read. I medicate and blog outside in shade. I watch comedies and stand-ups. DAWG, I squab and fight depression with everything I got until the sheer number of symptoms calms down. I can deal with any combination of six of seven with relative ease. At ten symptoms, I’m struggling. Give me dozen or more and I call that a relapse. The depression is independent. Once it’s kicking, it can take days to pull myself together which is the ugly and negative side to being so damn positive. I need the most help on these days. There’s little anyone can do for the pain, aches and discomfort of incurable diseases but that depression… That dark, lonely, pretending everything will be aight is a real concern.