In the Beginning

Ok. Ok, ok, ohhhKAY.

Many, MANY things have happened since I’ve wanted to start this website, the most notable being my diagnosis with MS. It was a truly shit day, because not only was I diagnosed with an incurable disease, but two hours prior I had woken up to find our dog had died in his sleep. Honestly, still to this day finding him was worse than anything I was told by the neurologist. Roughly 9 months before I had just had a medically necessary hysterectomy I was still rehabilitating from. After the diagnosis, my body was basically done. Walking sucked, standing sucked, I already hadn’t felt the bottoms of my feet in over 3 years thanks to what I now know what neuropathy. I’ve worked SO hard since then to regain as much of my normal mobility as I can – and I’ve done pretty damn well if I do say so myself.

I’m going to take this moment to give my disclaimer: I am NOT a doctor. I am NOT a specialist in anything. I am person who has been given this particular body to live in and have decided to share about it. While I hope that by sharing my experience helps someone feel less alone, I in NO way think anything I say should be taken as medical advice. I’m a person on the internet. Go ask your medical professionals, they are smart, and spent a lot of time and money to know a lot more than I do.

A lot of it is retraining muscles and nerve patterns, but an equal amount is just showing my body that we’re ok. Celebrating when I do even the tiniest thing that I couldn’t three years ago. The difference it’s made and continues to make is kind of remarkable.  I have an amazing medical team now, though it took 10+ years to get here.  I’m lucky.  I low-key threaten them all with please don’t leave me, because the journey getting a good team has been an arduous one.  I see my PT twice a week, and she’s helped me realize there’s a lot that I can do and have control of.  I tell her I’m going on a day trip to the mountains and she builds me an obstacle course “river with rocks” so I can practice with walking sticks for balance.  I say I want to be able to go on boats again and she says, “ok well let’s get you on the trampoline today.”  This year I told her I want to be able to do a pull-up, and she grabbed a giant resistance band and looped it around the pull-up handles and said, “I have so many of these, I can shoot you through the roof.  You want to do pull-ups, we can help you do pull-ups.”  It’s awesome.

My biggest complaints are always dizziness and fatigue.  For a long time I was dizzy constantly with little reprieve.  It sucks.  I don’t recommend it.  And when I say fatigue, it’s not just “oh I’m tired.”  It’s like someone has taken a giant syringe and sucked every drop of energy out of me.  I’m tired on all levels: physical, mental, emotional….there’s nothing but exhaustion.  It’s not something you can sleep away either, unfortunately.  Even though it’s been two years, some days my diagnosis and symptoms are overwhelming – they seem like an insurmountable pile of gunk I have to slog through just to exist.  My thoughts are mostly, “Will I always feel this way?”  “I want off this ride please, I’m dizzy.”  And then I have a moment and cry.  Other days I feel almost “normal.”  It’s a choice for me every day how much I let the diagnosis “win.”  It’s a balance between what can I do (and want to do), and what’s damaging or not possible.  I was NOT good at this for the first little while.  I’m still not great at it, but I’m learning.  I plan to write more about my experience as I come more to terms with it, since this is still a fairly new journey.  Even so, I have a lot to say…. but that’s for another day.