It's 4am...again. I wake up unexpectedly for the second morning in a row and can't fall back asleep. Rolling out of my warm cocoon of a bed, I plod downstairs, open my Mac and warm a mug of water for tea and write. The only sound is the gentle humming of the ice machine on the counter, the glow of the entry way light in night mode and that slight buzz of silence. It's oddly peaceful, cathartic even. It's as if time is suspended and I am granted a moment of stillness before launching into what will be a very busy day. I wrote this post, published, deleted and am writing again. It's my record of living with a disease, and I want to be real-- not to solicit pity, but to cultivate understanding and empathy.
It's been 6 years now and today is my MS-iversary. A time to reflect, acknowledge and move forward. This is a big deal to me as 6 years ago, curled up in the fetal position getting a spinal tap, I didn't know what the future would bring. There's a lot to celebrate: walking, working full time at a job I love with new job duties I love even more, still married (yes, divorce after diagnosis is a thing), managing symptoms (which are annoying but not debilitating), and moving through the minutia of life with varying degrees of success.
I have RRMS (relapse-remitting)--the less scary subset of MS. MRI's are soon, which always stress me out. Laying in a tube so long (they MRI my cervical spine and brain) is uncomfortable and the results can be scary. Luckily, I have done enough work that I can go to a place in my head and stay there until I am finished. I hate the moment I first go in and feel like I'm going to suffocate...and I'm allergic to contrast, so that's an entirely different stress and something I have to prepare well in advance for. I'll use a sick day for it next week, which I hate to do, but in order to tolerate the contrast I have to start a high dose steroid burst and I don't like navigating the side-effects in front of my students. The ghostly white skin, headaches, crazy energy (best to use that one at home cleaning, lol) and whatever else I'll do this time around--it'll be better to be home before the hospital.
I started yoga and have an instructor I really like. Seeing her the day after Thanksgiving, I asked how she was. She smiled and said, "You know...not awesome."
It made me pause. I know what it feels like to feel not awesome--not terrible, but not great, and it's ok to acknowledge that.
For those newly diagnosed who were referred here, or friends/family following my journey--I do want to acknowledge the reality of where I am and share my next steps.
I am a little more worried about my MRI results, I've noticed subtle shifting and I hope it's not progression. I've been 6 years with no progression and I'd love to stay there. However, I'm a little less steady--few falls, but sometimes I think I've moved my feet, and they don't move, or I'm walking and feel disconnected from my legs. I have some muscle pain in the front of my legs I haven't had before. Going up and down stairs requires more mental power than I'll admit. To combat this--I keep moving. I make myself do at least one flight of stairs up and down at school. I know I've got to use it or lose it. I try to walk with my pup every day. The cold temps make it hard, but I have to keep moving.
Navigating my inability to regulate my body temperature is brutal. MS patients can't tolerate heat. Through trail and error, my limit is 85 degrees, then I've gotta go inside. However, heat warms me up and I always feel the best in warm, buttery sunshine. I long for a world of eternal summer. Some with MS struggle with cold--me included. MS + RA is brutal. Not being able to get warm causes shivers, muscle contraction/spasms and joint pain. With the exception of back issues, it causes the only pain I deal with. Heat stops me in my tracks, I cool down, I sleep and I'm ok. The cold? It's relentless. I layer, move, drink tea--all the things--but I still feel like I'm constantly dodging the pain that cold brings. I live in the desert in Southern Utah. I'm not dealing with snow, ice and it's crazy to me that every year between Nov-March is so hard. I just dread it.
The reality of living with bone-melting fatigue is taxing. MS fatigue is not just being tired, it's like your body's auto mode moves to manual, and instead of just functioning independently, you have to steer the ship. There are times I have to tell my legs to move to get me to the car after a long day at work, or I'm so tired when I get home that I have to just sit. I miss out on stuff, I say no to things--it's an entirely different way of living for me. I am a recovering Type A personality after all. It's embarrassing, annoying and self-defeating. It makes me feel weak, and I don't like feeling weak or old. It helps to move more. I teach every other day and on the off-days I am an instructional coach helping new teachers teach and supporting my faculty. I get to walk around and move more those days, and I am so grateful. More movement seems counterintuitive, but it makes all the difference. I try to eat well, use good supplements, etc. but the fatigue is an ever-present thorn in my side.
Other symptoms are par for the course with MS: bladder/bowel issues (right now I'm in a standoff with my urologist on next steps--more to come there) which are annoying, but not a functional issue; glitches in memory and speech, vocal disorder, vitamin absorption/blood level issues, depression, sensory overwhelm, eye nerve issues, etc. By and large, I'm managing symptoms well, it's just management and mindset.
Wins: I've discovered yoga and an MS specific muscle-building program that I am excited about and have added to my routine. I have high hopes to hike again--missed that one a lot. I'm constantly readjusting my diet. Still gluten-free and dairy-free. I've put on a little weight I can't kick. My biggest issue is lack of appetite. I don't overeat, but my combo of supplements takes my appetite away. I have a very difficult time eating more than once a day. This has not translated to weight loss, lol. Lots of work to do there.
By and large, it's a beautiful life with a massive roadblock I navigate the best I can. As always, all thanks to God and my Savior for their guidance--they've never steered me wrong. I appreciate my partner, Justin, for making it all more normalized and for my kids, family and friends for cheering me on.
So...6 years down and many more to go:) I hope a cure is found, but if not, I'll find peace in the not-awesomeness of it all.
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