When I think back on my life pre-MS, pre-autoimmunity, I was sick or hurt a decent amount of the time. Not like 24/7 or anything like that, but something always hurt, or I was sick. This increased as I got older, and especially through high school. I used to joke that my body was revolting and that it was attacking itself.
Damn. How spot on I was.
Little did I know that I was foreshadowing something epic. My little joke would become not so funny in the not so distant future. And that future? Would be changed forever.
Thankfully, I was diagnosed rather quickly. I started experiencing weird symptoms at the beginning of the summer of 2009 and by the end of August, I had a diagnosis of Clinically Isolated Syndrome (CIS). The first stage of an MS diagnosis; when you’ve only had 1 episode of symptoms, and your doc isn’t quite sure yet of how you’ll progress. So you get thrown into no-mans-land. A waiting game of will I or won’t I. Will this be the appointment where it all comes crashing down? Or will I squeak by until next time.
I didn’t make it that far into no-mans-land.
I got the “official” MS diagnosis soon after. To make things easier, I just count the original CIS diagnosis date as my MS diagnosis date. It was already happening, already set in motion, why confuse things even further.
I had my medication chosen. Reluctantly I began to learn how to inject myself daily. This was the new normal, I guess.
Over the next few years, I went along with life as “normal”. Or as normally as any young 20-something could, while shooting myself in various parts of my body daily. Dealing with the lumps, divots, aches and pains that it brought. Whenever anyone asked how I was doing, I gave the standard answer: I’m Fine. With and emphasis on fine. Almost like an annoyed teenager talking to their parents.
I was angry. I wasn’t letting the gravity of the situation sink in. I didn’t want to. I hated anything orange and any mention of chronic disease or autoimmunity. I felt like it was a direct attack on me. I didn’t want help (do I ever?) and I didn’t want this disease.
Thankfully, I was still able to do all of the activities I was previously doing. Including running. I enjoyed running races and ran several half marathons. This led to a few run ins with blisters, which led to a few infections. You can’t really be on immunosuppressant medications while fighting infections I suppose. Gladly, I took a break from my MS meds while clearing the pesky infections.
The rub? I never really went back.
I was rather inconsistent with Copaxone after that. I had stock piles in my fridge, only injecting on the rare occasion. It wasn’t until I met my then boyfriend, now husband that I went back to a more consistent schedule. However, as before, the damage and inflammation were already set in motion.
My neurologist doesn’t blame MS for my first relapse, he blames me. Which, to be honest, is totally fair. I stopped taking my medication cold turkey with no other interventions in place. What was I really expecting? To be magically cured by stubbornness alone?
This set off an almost 2 year period of relapses, symptoms and uncertainty. I went from being symptom free, being able to live life relatively normally to not feeling an entire side of my body overnight. Yikes. Talk about scary and life being flipped upside down.
It took me a long time to get back to where I was. And even then, I’m not sure if I was ever 100% “back”. Heat now affected me, I got fatigued easier, I felt numb/tingly/burny at random times. I started to feel like I actually had MS.
I’m not sure how exactly, but at some point after all of these relapses, I found a few articles about the Autoimmune Protocol. I remember reading about it for the first time and having mixed feelings:
The struggle was real.
I shared my newfound wisdom with a few people, who immediately called me crazy. Part of me agreed with them, TBH. But after enough time, I said enough.
I have to feel better, and medication alone ain’t cutting it.
I embarked on my AIP journey in January of 2016. Fueled with the frustrations of incredible pain, overwhelming fatigue and uncomfortable sensory symptoms.
It was not easy. But nothing that is worth it ever is.
I struggled without my chocolate and coffee, like whoa. I found out that nightshades (includes tomatoes), that I practically lived on as a kid, were one of my biggest offenders. And I realized, that yes, I can learn to like veggies. So sorry mom, for all the pain I put you through.
Eventually the pain subsided, the fatigue lifted and the sensory symptoms calmed. Was I “back to my normal, pre-relapse self?” Not really. But was I better? Hell yea.
I slowly crawled out of my relapse hole. I started being more active. Bringing back more foods as my symptoms calmed. I started living life again.
Was it scary? Absolutely. I felt like at any moment I could wake up and not feel a part of my body, or move a part of my body. But that’s how this goes. At any point, anything could happen. To any of us, really. But I try not to live there. In the “unknown”. Because that’s all it is, unknown. If I know that I’m doing as much as I can for myself, then that’s all I need. The rest will shake itself out.
How am I doing now? I’m doing pretty damn good for someone who has had MS for 10 years, if I do say so myself. I’m proud of everything I have done, everything I have accomplished. All the work I have put in to improve my health.
My MS has changed over the years, for sure. It’s gone from almost silent, to frickin LOUD, back down to a dull murmur. A question I get frequently is: Am I totally 100% symptom free? As improved as I am, I’d have to answer that with a big Nope.
I still have trouble with the heat, I feel weird sensory symptoms now and again and my bladder? Oy vey. That’s a story for another day. But, I’m able to mostly get through a day without being derailed by MS. And that’s a big Win, in my book.
Sometimes my brain gets the better of me when I think about the future and what it holds. But I remind myself all I can do, is what I’m doing. The rest is up to God.