Nope. Didn't do it.

So I was all gung-ho to participate in two separate MS Walks this weekend. And didn't do either one.

I'm telling you, fatigue is a sum-bitch.

I got home from my vacation Monday night. Exhausted.

Tuesday I spent trying to catch up on basic post-vacay stuff like shopping, laundry, email, etc. Of course, everything now takes me a lot longer than it used to, and I was wiped out by the prior 14-hour travel day.

So Wednesday rolls around and I'm at the hospital all day with my mom who had major shoulder replacement surgery (she rocked it!).

Then Thursday rolls around and half my day is lost to previous obligations I cannot get out of, though by all rights I should not have been driving a quarter of the water polo team to a venue 2 hours away, especially since I've never been there and I was driving in city traffic. Thank goodness my daughter helped with directions; my brain fog and a migraine pretty much melted my cognition for the day.

Friday rolls around, I'm feeling slightly better. I get a few things done, get my hair done, which is a nice break, then I'm tending to my other daughter's preparations for her weekend of dance recitals. I looked around me, saw all the dirty laundry, the piles of clutter, the fridge without food, and my ridiculously messy office, and I just succumbed to the overarching wave of fatigue that's been holding me in its current all week.

Fugettabotit, there won't be no MS Walk for me this weekend.

Instead, I got up early yesterday, did my grocery shopping before all the rest of the people came, so I could focus on my list, take my time, and not get wiped out by traffic and the general sense of overwhelming I get when I go to the store anymore. Then I ran a couple of errands that were grossly overdue. Then I came home and did laundry and finishing unpacking (did I say I was behind?) and then I took a nap. I overslept from my nap and threw on new clothes, grateful my new hairdo from yesterday was still holding up as well as the day's earlier makeup... I was late for dinner with my MIL and BIL before my daughter's recital! Dag. Went to the recital, which was AWESOME but also EXHAUSTING, especially since my MIL takes so much energy to be around. Very grumpy, demanding, emotionally challenging. I had some problems with speech and doing math in my head when I went to buy flowers for my daughter. I hate that.

So today I'm up at a regular time, have done some laundry, revised my To Do List and have been tackling little this and thats all morning. Already I need a nap and it's not quite 11am. But had I gone to the MS Walk today, I would have been WIPED OUT before I even got there. At least my migraine is gone and I am feeling like my marbles aren't rolling out of my skull today, but the exhaustion is still leadening: my arms, legs, even the top of my head weigh about 100 pounds each, it seems. But I feel lighter knowing I made the right choice.

Thanks to my friends and family for donating and/or walking in my stead today. I guess I have to be fine with being the recipient and not the giver, something I don't always do so graciously or willingly. But this weekend was good practice in putting my health first and following my gut, and though I wish I could have seen friends out there on the path this weekend, I'm glad my day is wide open to a little bit of this and that.

Maybe related? A very well-meaning, lovely friend of mine revealed to me that she knew someone with MS, and that person worked out every day and did just great! Part of me is like, yeah, good for them. Sincerely. And part of me is like, hmm, I bet they didn't have mobility issues and this chronic fatigue that I have. And part of me is like, yeah, right, working out everyday is NOT the cure for MS, people.

This is why we need MS awareness across the masses. MS is not a muscular disease, nor is it a metabolic disease. Exercise and eating right make anybody feel better, but they won't cure MS, and for many with MS, what MS Unplugged hostess Deanna Kirkpatrick calls "the snowflake disease" because of its widely varied presentations, the idea of exercise at all is next to impossible. Even eating at all can be problematic for those with swallowing dysfunctions.

How is this related? Because we need to have more dialog with nonMSers to drive home these points. We need to have practice as MSers in educating people through these mischaracterizations of the disease.

I didn't really say anything in response because, guess what? I was too frickin' tired.

National Multiple Sclerosis Awareness Month || Three of my MS heroes

I recently posted about celebrities who have MS and who have done some things to get the word out, but I would be oh-so lost without the work of three individuals in particular who have made a huge effort to put good information and support out there for other MSers through their excellent use of media.

Amy Gurowitz || MS SoftServe and MSUnplugged

Amy has lived with MS for more than twenty years and is now bringing that experience, as well as her great sense of humor and sharp mind, to a new nonproft, MS Softserve. MS Softserve is a customizable, interactive online learning environment for people trying to make sense of their MS in a way that's empowering to the user. MS Software received the first grant ever awarded by the National MS Society. It makes sense that Amy should want to build MS Softserve, as she works as a consultant and guest speaker to help healthcare professionals better understand the patient experience and to be a stronger link in the patient-to-doctor communications chain that is health literacy. Amy has worked tirelessly with pharmaceutical companies, physician organizations, nurse educators to find ways to improve the lives of patients with MS. She's also the lively and likeable host of the radio program, MSLOL (Multiple Sclerosis Life of Learning) Radio and companion to the Two MS Chicks Radio program (now known as MS Chick and Ms. Diagnosed).

Deanna Kirkpatrick || MS Chick and Ms. Diagnosed and MSUnplugged

Deanna is a radio deejay by trade and a formal pharmaceutical salesperson, but she is also the amiable other half of the wonderful MS Chick and Ms. Diagnosed radio program with Amy Gurowitz. Deanna also teams up with Stuart Schlossman for the information, cutting edge radio program, MS Views & News. Both programs are part of a larger MS education media effort, MS Unplugged. She is also the chief administrator for the excellent Facebook group, MS Unplugged. Her story is a bit unique: she has lived with and treated her multiple sclerosis for several years until, in 2013, she was "undiagnosed" with MS and given a new diagnosis, Transverse Myelitis, which is a very rare autoimmune condition with many of the same symptoms as MS. Like Amy, Deanna's is a cheerful voice on the air and she works diligently to discuss the day in and day out experiences of living with a chronic, disabling medical condition in a way that helps others to understand their "new normals" and to do so with a measure of positive energy and a sense of humor.

Stuart Schlossman || MS Views & News and MSUnplugged

Stuart's work appeals to the journalist in me! He runs the highly informative radio program, MS Views & News, where he interviews all kinds of doctors and experts about specific issues related to MS, with Deanna Kirkpatrick as his sidekick. Stu's is a major nonprofit multimedia effort, which includes the MSBlog, a major website hub, a weekly newsletter and a YouTube page. Stuart was diagnosed with MS fifteen years ago, his efforts to develop these useful, informative educational media programs came after he was unable to locate the kinds of resources he needed on the internet. He also serves as a patient advocate for the pharmaceutical company, Biogen Idec, which produces several of the major DMTs for MS: Tysabri, Avonex, Rituxan and Tecfidera. Perhaps the greatest favor he does for the MS community is to ask the hard questions and to challenge or expose "snake oil salesmen" as well as those who would spread misinformation and build false hopes in the millions of patients with MS.

Personal note: You can have a bazillion organizations out there like the National Multiple Sclerosis Society and the Multiple Sclerosis of America, and they can jam their websites chock full of information, and they can be really good at this, but their websites are still voiceless and faceless... great for looking up information, but not great for getting the full human experience that these three MS superheroes provide with their tireless voluntary efforts.

We live in a great world when we see people like Amy, Deanna and Stu come forward with their passion, their skill sets and their willingness to put themselves out there in the combat zone for the rest of us to learn from. I have learned more about MS and the experience of having MS from these three than from all the books, magazines and organization websites out there COMBINED. My hat is off to all of them, as well as to the emerging new armies of bloggers, speakers and video artists who are inspired by the efforts of these three to bring real human experience to the conversation. Without these people, I would just feel like a helpless victim, but because of them, I aspire to do more, to be more and to take better care of myself.