i don’t want to call it an anniversary because those are meant to be celebrated– its been 2 years today since i was diagnosed.
the last week has not been an easy one. i found out that i am full of active inflammation and demyelination. as a result of this constant ongoing stress of my over-active immune system i have felt very fatigued. while the doc i saw was eager to dish out info and options for medications with dangerous and deadly side effects, she wasn’t exactly open to doing anything at ALL about the fact that i don’t want to get off the couch…ever, really. i am now taking a full cabinet’s worth of supplements and green smoothies in an attempt to feel somewhat energetic. its sort of working.
aside from that its been a week of harsh realities. last monday i did a 53 mile ride. i rode in the mid day heat till it was nearly dark and at the end of it i had two thoughts: 1) that triple chain ring was totally worth it; and 2) there is no way i am riding the 100, or even the 75. there just simply isn’t enough time to get the rest of my training in so i will be riding the 40 mile instead. i feel so disappointed in myself. i have never truly believed that i wasn’t physically able to do something because of MS until that moment, 6 miles from the end of my ride when it was getting dark and my legs were screaming in hot burning pain that i came to terms with the fact that i simply didn’t have the energy. i rode those last few miles feeling totally defeated.
if i had felt better i could have trained more. i’m trying to be kind to myself and not furious. i’m trying not to call myself lazy, and weak, and a quitter. but that’s how i feel. i know i can’t compare myself to others and i know that even people without MS would struggle with this ride. i just wanted it so badly. i have been uncharacteristically tearful over it, and in general this week. i refuse to think that i can’t ever ride a century just because i couldn’t this time. i know i can and that i will. but for now i have to accept that i couldn’t. that having MS limited me. i am finding that incredibly hard.
in the midst of personal failure, i started working full time. i now commute 20 miles (roughly 45 minutes) each way m-f. it’s my first job as an OT and i’m doing ok with it. i feel like i’m winging it a lot at this point. but i know thats just how its going to feel for awhile. i know my stuff, but it’s the first time i’m truly being asked to use it. all of the nuances of treatment the other therapists have down pat are brand new to me. i come home exhausted and starving each day. but it’s one step closer to my goal of traveling so i’ll take it.
i found out that today is the birthday of a good friend. she passed away from colon cancer last march. i hadn’t realized until today that her birthday is the day i was diagnosed with MS. it seems fitting though. she was one of my biggest supporters. we named our waves to wine team and designed our jersey in honor of her. so it feels full-circle to me that we share this day.
Rel and I walking over golden gate bridge
its been a hard week, but even so i’m doing pretty well. i’ve been relapsing for over 4 months now and my EDSS score is still a 2. i have 3 new lesions which brings my total up to somewhere in the 15 range and i still walk normally. i can still do everything i need to within a day with almost no limitation (except for fatigue!!!!!). i know how lucky i am. even though i’m feeling sad and angry i still feel grateful that i am doing so well 2 years after diagnosis.