How has it already been five years? I remember half walking, half dragging the numb side of my body into the hospital in 2018. The day before my husband’s 30th birthday, incidentally. After a month of dealing with steadily worsening numbness, fatigue, and pain, amongst many other troubling symptoms. I knew what was going on, what was causing my body to act in such a strange, debilitating way. I knew what I was about to get diagnosed with, I felt prepared. Quickly, it became apparent to me that just knowing can’t prepare you for the words coming out of a seasoned Neurologist’s mouth…Multiple Sclerosis.
Ten years of fighting strange symptoms without a diagnosis ended abruptly.
Back then, I felt validated, for the first time in what felt like an eternity. I felt anxious, at the unknown heading my way. I felt overwhelmed, from all the specialists invading my hospital room every hour. Most of all, I felt unsettled. Like a tree in a violent windstorm, its roots ripped from the ground by a sudden gust, scrabbling to find a new foothold as it lands back on solid ground after what feels like an eternity up in the air.
But, it wasn’t an eternity…it was three days attached to an IV pole pumping steroids into my malfunctioning body. After 3 days, 3000mg of steroids, and an information overload frying my brain, I was able to leave the hospital. Not empty handed, though. I left with a new diagnosis, a new Neurologist, and a new journey unfolding right in front of me.
Well…I have to say, 5 years later, and I’m still grateful for it. I still feel like I was almost reborn that day. Still feel like I got my life back that day, in a way. It has been a journey unlike any I’d ever imagined. But, it’s ended adding to my life in ways I also never imagined.
Take, for instance, this blog. What I’d initially started to reach out to those on the same journey as I, has grown into something that has helped offer hope and support to more people than I can count. I like to think this blog is what I was looking for when I first got diagnosed – a window into the world I suddenly find myself in. A window filled with hope, but realistic hope. Not sugar coated, just ways to manage on the good & bad days life sees fit to throw us.
Speaking of ways to manage – like most of my anniversary posts, it only seems fitting to share how I’m managing these days. I’ll talk a little bit more about acupuncture & therapy in a later post, but I feel like those two have helped me immensely in the last five years. For now, suffice to say that both help me mentally, physically & spiritually.
Still sticking to the mostly vegan, occasionally vegetarian die. Last year was not my best diet wise. Thankfully, 2023 saw a blossoming of old habits – cooking at home for almost every meal, using no dairy while at home. I just started going through my OMS cookbook again, and cooking some of those recipes. I’ve actually started to incorporate a lot of OMS habits in the last couple months. We are occasionally going out to eat for special occasions, and even more occasionally having dairy as part of that meal. I’ve felt better the past few months than I did all of 2022. I know keeping dairy to a bare minimum, along with keeping an eye on my saturated fat intake has been a part of that.
Much like my diet, exercise took a back seat in 2022. Don’t get me wrong, I still did yoga at least 3 times a week, but not the PT exercises and weight lifting I used to do. This year, I’ve gotten back to my old ways – since January, I’ve made exercise a priority, and I feel much stronger for it. In a previous post about PT, I discussed why I was first introduced to it, how it was so helpful for me, and what type of exercises I do.
One thing that didn’t change in 2022? Injecting my DMT, or disease modifying therapy, Rebif. I shoot for (no pun intended, but I guess it works) injecting three times a week – however, life can get in the way, as we all know.
Like I’ve mentioned many times, 2022 was a very strange year for me. Even on my most lacking weeks, I still always got in 2 shots a week. This year, it’s been three every week, without fail. In June, I’ll write more about my journey with Rebif – it’ll be four years of being on that, if you can believe it. After that first year on Plegridy, these last three on Rebif have been a piece of cake in comparison.
The last thing I truly believe has made a big difference in my – and possibly the biggest – was slowing down.
I mean that, sincerely. Slowing down in every area of my life, from the reality based things – like work, school, house work, etc – to the things I can only feel a difference in – my relationships with friends, family, spirit, my community, etc – benefited me in ways I could take days to explain thoroughly.
By slowing down, I’ve found time for all the things missing in my life. Gardening, hiking, geode & ghost hunting, meditation, reading the Bible, visiting museums…these are all things I’d considered beneath my interests before MS got a firm grip on my life. Now, I couldn’t imagine going any length of time without them.
One thing that is new in my life that I feel is making this journey easier is my spiritual journey. Since I started working for a church, I’ve been studying Christianity more. I’ve enjoyed and been in awe the whole time. I’m a big proponent of following your own journey. Whether it’s Christianity, Paganism, Judaism, Wicca, any of the countless paths out there. No matter what religion I’m studying, I find a lot of relief and solace in the messages I find and the coincidences I experience. If that’s your thing, it’s worth taking a look at, in my humble opinion. I’ll be talking more about that in my next post, actually.
Eating well, moving my body, Rebif, meditation, acupuncture, counseling, my faith, getting out in nature – I feel like I’m rewriting an old book I’ve read so many times before. These are things I’ve been shouting about since I got diagnosed. Well, after I tried for a year to figure out what was working for me and what wasn’t.
That’s pretty much what it’s been…a whole bunch of trial and error. Some success, a lot of failure, and growing into my new normal. Five years of just figuring out that new normal. How to make it through what life throws at me…just like anyone else. I’ve just got a couple chronic illnesses thrown into the mix, keeping things lively, I suppose.
As always, feel free to email or comment with any comments or suggestions. You can also follow me on Instagram or Pinterest to see more of what I’m up to.
Until next time,
