I was diagnosed with Multiple Sclerosis (MS) nearly 5 years ago. While wrapping up a relationship that had gone to shit and working an unnecessarily stressful job. I have relapse remitting Multiple Sclerosis; so I go through times of rough patches and other times I’m completely “fine” (as fine as someone whose immune system is literally attacking their body can be). I put on a brave face but recently one of my best friends was totally in shock when I told him what MS does to me. So let’s talk kittens; MS fucking sucks.
Who does this body belong to?!
When I was diagnosed I learned I was extremely blessed (believers are blessed, not lucky) to walk without the aid of a cane or walker due to the placement of the lesions on my brain and stem of my spinal cord. Sure my gait is off and I sorta waddle when I walk but I don’t need assistance. I was put on steroids for far longer than I needed to be and hello weight gain! Now I’m aware that in your 30’s it becomes harder to shake weight especially when fatness runs on both sides of your family (love y’all). I have not been able to lose more than 22 pounds of the damn near 70 I put on. Oh! But these new big ol perky titties that came with the weight gain are amazing! Working out is completely different for me now my endurance is complete shit, my balance being off and I’m just not as strong as I once was. I grew up cheerleading and being able to toss a girl who was like 120 lbs into the air. 50lbs is lucky to make it to my shoulders now! I never knew how much pride I took in my strength until MS yanked it from me.
Waking up in fear
Multiple Sclerosis isn’t a disease that’ll kill you- it just makes life more complex. The leading cause of death with MS last I checked is suicide (ain’t go out like that). MS patients may lose sight in one or both eyes for months at time (sometimes permanently), we may lose our ability to walk for months at a time (or permanently). I woke up every morning for nearly four years one eye at a time fearful that I’d lost sight while sleeping once I assured myself I could see I wiggled my toes to make sure I still could.
I’m always tired, I have extraordinarily low Vitamin D and B12 levels (so low I take 50,000 milligrams of vitamin D a week) so I’m always ready for a nap. I do best if I can take a nap for an hour once every 4-5 hours (not practical- I know). I could do better with taking my vitamins but they nauseate me. My always being tired makes me hella irritable- so there’s that.
I’m often times in a fog- I’m more forgetful than ever and solving problems takes me much longer than it once did. My coordination being off can be lumped into this category as well.
Does MS hurt? FUCK YES! “You’re getting on my nerves” is a literal statement over here. Nerve pain and MS go hand-in-hand. Last week I experienced the most pain I’d ever felt- it was like EVERY NERVE ENDING was being jabbed with shards of glass. That day I was in like 94% pain most days I’m about at about 40% pain anything less than 35% pain I consider a good day and don’t think about the minuscule discomfort. I often times have spasms when sitting or sleeping that sucks the most (imagine a charley horse on ‘roids). I can’t always walk, squat or bend with ease but that’s just a “fact of life”. Stress management plays a important role in keeping pain at bay. If something stresses me out too much I can be bed ridden with pain, so I avoid stress when possible.
Dyskinesia (skip to 31 seconds to get to what it looks like)
When I’m in an exacerbation (time of relapse) I have these small seizure like episodes called dyskinesia any time my heart rate increased. They hurt like a MF- imagine being electrocuted internally. I knew when the “taze” (as I call them) was coming but there was nothing I could do to stop them. I would feel a sudden intense chill before a second to nearly 1.5 minute electric shock running through me where I may bite my tongue to the point of bleeding, my face would contort and my fingers and toes would spasm and twist up like some sort of novice gangster reppin’ their set. It literally looks like some shit right out of the Thriller video-It’s like I’m turning into a zombie. When I’m excited or stressed (during times of exacerbation) this could happen up to 4 times an hour. If my jam came on the radio I’d go into an uncontrollable fit. As you can imagine this made sex next to impossible. Which brings me to my next bullet point
Dating and MS
After my diagnosis I knew it would take a special woman to come into and STAY in my life. Not only would she have to be mentally strong, she’d have to be physically strong (a bitch may need help getting around) and she’d need to have a strong spirit. I couldn’t trust most women I’ve dated with my heart let alone my health. Little Miss Daddy was the closest I’ve ever gotten to having someone strong enough in all areas and get this, SHE ALSO HAS MS! Multiple Sclerosis being the tricky little asshat of a disease it is we experienced it totally differently. Sharing an awful auto immune disease wasn’t a strong enough connection and things as you know dissolved. I’ve been dating for quite some time and I’m frankly tired of first dates and the anxiety they bring: Do I tell her I have MS? Do I feel like explaining what MS is? Like really, when is a good time to tell someone you have an auto-immune disease?!
In a nut shell I don’t like any of the medicines I’ve tried so I don’t take em. I was on an oral chemotherapy which caused me to lose a ton of hair and made me nauseous;I feel worse while on it. The side effects outweigh the benefits with most of the medicines that slow MS progression. I’ve found that me eating fresh foods (no instant foods) has kept me from relapsing. I manage my pain herbaly, and that helps with my ultra-awesome cocktail of health issues (in addition to MS, I have anxiety and chronic depression). Does my best girl Mary fix shit? No but it soothes the pain both physical and mental while I figure things out. Depression and MS are low key a package-deal. Its to be expected to feel extreme despair when the diagnosis of ANY disease comes in.
I’m my Auntie’s Niece-
My favorite Aunt Darlene (Auntie) was also diagnosed with Multiple Sclerosis shortly after I was. My entire life people have insisted that I was her child not my Mother’s. I look more like my Aunt, People kind of gravitate to me as they do her, and we both have impulse and volume control issues. The final piece of the similarity puzzle is our smiles. We both have huge bright smiles that we flash almost like they’re magical. Auntie is my biggest supporter and she encourages me to do ANYTHING my heart desires. Auntie was diagnosed in her 50’s after perhaps 10 years of weird shit happening with her health. My getting tested after my health falling so radically prompted her to go through same testing which lead to her diagnosis. When we were diagnosed with MS the common belief was that Multiple Sclerosis was a random disease that wasn’t hereditary. However, recent studies support the notion that genetics do in fact play a significant role in who has MS.
Wow this post got long fast! Long story short- I HAVE MS, IT DOESN’T HAVE ME! Ya girl is out here beating odds, and I intend to continue to do so. The way I see it is if this dreadful disease can’t kill me I’m gunna be alright. My faith, my passions (creativity) and family keeps me going when things get tough.
the enemy will not claim victory- not here! Staying encouraged- this song means so much to me! GREATER IS HE WHO LIVES IN ME