Friday, January 19, 2018

Best Laid Plans

A lot of people ask me what my training consists of these days. usual, this is what my "planned" week looks like:
  • Monday-teach 5:30am Spin, swim for 30-45 minutes, get on the treadmill until 8:45, then go to Boot Camp (strength training for an hour)
  • Tuesday-5:30am boot camp, spend time either outside "running" or on my treadmill at my desk*
  • Wednesday-5:30am boot camp, swim, treadmill
  • Thursday-5:30am boot camp, spend time either outside "running" or on my treadmill at my desk*
  • Friday-attend 5:30am Spin, swim for 30-45 minutes, get on the treadmill until 8:45, boot camp
  • Saturday-treadmill or "running"
  • Sunday-rest and prep for the week

Now...I know what you're thinking. It IS a lot. AND I haven't done 100% of that planned week even one time! I'm paying VERY close attention to how I'm feeling and VERY close attention to my heart rate variability**.

I'm walking a line so fine I don't even see it clearly most of the time! If you've ever tried to push yourself after an injury, you probably know what I'm talking about. 

In my first appointment with the neurologist who diagnosed the Autoimmune Enchepolapathy, I rattled off all the things I had written down as "symptoms". I felt like a crazy person. None of these things seemed to fit together. One of the strangest ones, or at least the one that made the least sense to me, was my confusion with left and right. I'm not just talking about telling someone to turn right and pointing to the "other right". 

When I would put my hands on a keyboard to type I felt like they were crossed or upside down. I would stare at my hands and move them around trying to come up with any other way to put them on the keyboard that would make sense. One night I was reading a book and had the distinct impression I was reading in the wrong direction. I kept looking at the page trying to figure out what was going on. I had a discussion with Dwayne about it as if I needed to be reminded that it really was correct to read a book (written in English) from left to right, up to down. (That's the night he told me I HAD TO make an appointment with a neurologist.)

When I described all of the weirdness to Dr. Hitchcock, he said those were pervasive symptoms (all over the brain as opposed to being in one area) which led him to believe it was Hashimoto's Encephalopathy. (They don't use that term anymore because they have determined AE has no connection to Hashimoto's, an autoimmune disease of the thyroid.) 

When I look at this chart (taken from the International Autoimmune Encephalitis Society website) I can better appreciate what he was saying. I had symptoms from every area. I'm sure if you read that list you might wonder if something is wrong with your brain too. Let me assure you, if there is something wrong, either you will know or the people closest to you will know. Everyone forgets where their keys are or the word they are trying to say from time to time. Everyone can get an "earworm" stuck in their head, but not usually for days (and nights) at a time.

I fully believe I am mostly recovered now. But when I push too hard (mentally, physically, emotionally) I can have "symptoms" pop up. Imagine you had shoulder surgery. You completed PT and were back to "normal life". But then you went and played tennis all day. Your "recovered" shoulder would let you know it wasn't happy. My brain does that.

I'm not going to lie. It's VERY hard to listen to it sometimes.

I have this thing I say all the time: "ALL stress goes in the same bucket". Stress to the body (workouts, injury, illness, poor sleep), the mind (learning new skills, projects or jobs that require a lot of mental effort), the emotions (going through therapy to deal with "big T" traumatic life events or the loss of a loved one), the will (not being able to do the things you REALLY want to do), the senses (living near a nasty smelling dog food factory*** or hearing loud explosions multiple times a day or living with chronic pain)...all that stress adds up in the same column.

You can't separate one category from the other. You might think that having an incredibly stressful job while you are going through a nasty divorce can be balanced out by killing yourself in the gym (to "work out all that stress"), but you are most likely wrong. Those are all three STRESSES. Relaxation/meditation, deep breathing, massage, LAUGHTER...those are things that go in the other column and will take stress out of the bucket.

Most of the time when overall stress ramps up, and is not properly dealt with, bad things start happening. You start not being able to sleep. You get more emotional/irritable. You might "stress eat". You might have headaches, stomach aches or get sick easier. You might realize you are more forgetful. When stress ramps up in a vulnerable place (an old injury for example), you feel it. You will probably notice it, but you might not take notice of it.

There's another side to that equation. In order to get stronger, systems HAVE TO be stressed. For a muscle to be stronger you have to lift heavy weights. A healthy body will make adaptations in order to handle "more". But these changes don't happen in the moment of stress. The changes happen in the moments of rest.

When a system is under fire, all resources are thrown at the "problem". It's when the pressure is removed that the system can adapt and adjust in order to handle that situation better. This is how we learn new skills, how we handle more of what's thrown at us. 

The art of knowing how much pressure to apply and how much rest to allow is the art of "coaching". A good guitar instructor would never tell a new student to practice 8 hours every day 7 days a week to start out. That teacher knows calluses have to be built up on the fingertips. If someone new tried to play that much, their fingers would probably split open!

But, NO ONE has the opportunity to know your "systems" better than you do. I say "has the opportunity" because we all have our own blind spots! We can want to get back in shape so badly that we conveniently ignore clues that we are overdoing it until it's too late. (Or we can want the Oreos so badly we overlook what it's doing to our midsection!)

Taken from the IAES website.
I have been paying close attention to myself, but I don't always know how to translate what's being "said". Is that headache from stress overload or just a headache? Is that dizziness my brain telling me something or is it a sinus issue? The truth matters but the answer is the same: some kind of "rest" (or subtraction from the "stress" column). Extra sleep, laughter, massage, deep breathing/meditation...

My body might be itching to go work out, but if my brain has had enough, my body is going to have to wait. Think about that shoulder example earlier. If you just had surgery it doesn't matter how much you love to/want to/"need to" swim. It doesn't matter how fit you are cardiovascularly, or how strong your legs are. You will not be able to use that arm to swim (right now).

Sure, where there's a will, there's a way. I'm the queen of "but you can cover incisions with waterproof tape, you can immobilize the arm and do one-arm swimming, you can do drills that don't require that arm...". There's "always" a work-around. But when it's the brain, there aren't really work-arounds that work.

I imagine it's much like someone who has an "untreatable" injury (no cartilage in the knee or a torn labrum in the shoulder). They can push, but they have to know when to back off. (Who else starting singing Kenny Rogers' "The Gambler"?? Surely not just me.)

Thank you for joining me on this journey!

*My treadmill desk...the treadmill only gets up to 2mph. I usually have it on 1.5 if I'm typing something that requires a good bit of thought.
**HRV-there's a lot written on HRV but here's a great place to start if you are interested:
***I have personal experience with living close to a dog food factory. Trust me when I say you don't have to live very close. 

Sunday, January 14, 2018

Lumps, Bumps and Lines

I'm getting close to 50 years old. I have lines on my face. I'm sure there's a cream or treatment for that, but I don't actually hate them. I have lines around my mouth and eyes from almost 50 years of emotion. I have lines on my forehead and between my brows from years of near neurotic thought.  (Okay maybe I didn't need to add the qualifier in that sentence...whatever.)

I have lumps and bumps in places I wish were smooth. Some of them were the result of having my babies. Those are nice reminders. Some of them are just the way I was born. Those are constant no matter what I have tried to change them. They are reminders that I'm not in control of everything. Some of them are there because I spent over a year on high dose IV steroids for an autoimmune brain disease and I gained about 30 pounds. Right now those lumps and bumps are proof that I'm conscious and able to take notice! There was a time during treatment I didn't care one little bit about those lumps and bumps. I only cared if the treatment was working and if the disease was backing down.

Seven years ago I was a little overweight and very out of shape. I decided I wanted to train to run a marathon so I started walking every other day for 30 minutes. That soon progressed to a little running. That later progressed to swimming, biking along with the running. A few years later I decided I needed to add in strength training. I wanted to lose body fat and gain muscle. And I did.

If you've been reading my blog for long you might remember my post "Before, Now and Looking Ahead" where I included these before shots:

In the next year I trained HARD and made my goal of a sub 13 hour Ironman. I gained about 10 pounds but I lost about 5% body fat.

I finished Ironman Chattanooga feeling the most fit I had ever been.

And then I started having strange symptoms. I couldn't find words as I was talking. I was really struggling to remember things. I had weird pains, numbness and tingling. And then I forgot how to get out of my own car while sitting in my driveway. I didn't know how to use the phone. I didn't know my husband's name. It didn't last long, only a few minutes maybe. Suddenly I knew what the door handle was, what my phone was and how to call my husband whose name I remembered. It took several months but I was diagnosed and started treatment which I can now (2 years later) say worked.

In the process of getting my brain to come back online, I've gained 30 pounds and that muscle I worked so hard for has marbled out with fat. I also lost all that fitness I had pushed myself to gain.

I find myself in what is undoubtedly the worst shape I've ever been in. I weigh considerably more than I've ever weighed (non-pregnant). (I'm only 15 pounds away from my heaviest weight EVER...the day I walked into the hospital to deliver my 10 pound son!)

Don't get me wrong, I'm not actually complaining. I'm just taking an appraisal of where I currently find myself. You can't know how to get where you are going without knowing where you are. You can't plot a course if you have no idea where you are (and where you are going).

So, here I am. 170 pounds this morning. 34% body fat. 37" waist and 47" hips. (DANG)

 (Those are the same shorts...I can't put on the same top anymore.)

I love my body. I know that sounds odd but I actually do love it the way it is right now. The truth is I can look at myself most of the time and be more than just okay with where I am right now. That doesn't mean I want to stay where I am. 34% body fat isn't healthy. High body fat percentage is linked to all kind of health issues. I'm not being mean, I'm being honest.

I've started a 6 week Transformation Challenge with Adventure Boot Camp's Joe Martin.  Some of the lumps, bumps and lines are going to be there forever. But some of them won't.

I can love where I'm at, but know that I'll love where I'm going even more. The thing I can't do is hate the body I'm in and expect it to take me somewhere else!

Thank you for joining me in this journey!

Make it a GREAT DAY!

Monday, January 8, 2018


I have big goals for 2018.

I finally feel like I'm "recovered" from the ants I had in my brain for almost two years. I'm ready to shed this extra weight I put on and get down to some serious training.

But (there's always a but isn't there?!) I know if I hit it too hard and/or too fast I'll be back at square
yes, it IS creepy...
one quicker than I can blink an eye.

Autoimmune fatigue is unlike any other fatigue there is. If you have any autoimmune disease, you know what I'm talking about. If you've had babies and have had long periods of time where you aren't able to get good sleep, you still have NO IDEA what I'm talking about! It's just not the same. Add to that an inability to use words well, to form coherent thoughts, dizziness, emotional volatility, muscle weakness, severe anxiety, the most intense carb cravings I've ever experienced in my life (actual quote: "someone is going to lose an arm if I don't get a Kit Kat right now"), and a level of brain fog that I can't describe and you'll have more of an understanding where I've been.

I want to be clear, what happened to me is SMALL. Cancer is big. MS is big. ALS is huge. The list could go on and on. My little two-year blip is TINY compared to a lot of things.  But it was a big thing in my life. It was a major life disruptor. It was a plan derailer. It was a HUGE obstacle for me to overcome. I've had some pretty big hurdles in my life and this one is at least in my top three. (I'd really like to keep it that way.)

Many friends have said they had no idea it was as bad as it was. That's a good thing. I wasn't bedridden for two years. I continued to coach. I continued to teach Spin (for all but about three months and some odd days I had to get subs for various reasons). But I wasn't fully me. I was disconnected from people I love. I was less communicative. I was MUCH less able to be out and about in the way I like to be. I wasn't able to cook and keep my house moderately clean the way I was before. (That's not saying much...but that made the loss all the more difficult!)

Thank goodness I'm off that ride!
The last two years are very much a blur for me. I can look back and know what happened but it's like I was removed from it all. The thing that hurts the most is that I wasn't able to fully appreciate the time I got to spend with my grandparents before they both passed away. I can't fully explain how it feels to be separated from yourself but imagine the most distracted you've ever been and then try to do the hardest task you can fathom, but you aren't allowed to put attention toward that task.
And attempt that task in a room with all your worst fears. It was horrible.

AND (there's not always an and, but there is this time)...I know most people dealing with AE have it MUCH worse than I did. Many of them have seizures, psychotic episodes, hallucinations, catatonia. Some can't speak at all. A shocking percentage die before they are properly diagnosed and treated. The fact I got to a doctor who knew what it was and that I got treatment that worked so quickly was life-saving.

Now that I believe I'm on the other side of that health mountain, I'm ready to move forward in typical Dana fashion....full speed and reaching for the outer limits of the universe. (Some people say "the sky's the limit" or "I'm reaching for the moon" but why be myopic?)

For 2018:

  • I want to participate in a race a month
  • I want to train at the level to which my body will appropriately respond
  • I want to feed myself healthy, life-giving food
  • I want to honor where I am and what my body/mind/will can handle
  • I want to be kind to myself (and others)
  • I want to write more.
Yes, I know all by one of these are not measurable goals and they aren't specific. But goals don't have to be. Objectives do. Goals are the big picture, objectives are how to get there. I also recognize these goals might seem small-fry compared to where I have been before.

I'm not who I was. I have a new perspective. I have a new lens to look through. I'm in a very good place.

If I can accomplish the last one on that list, I'll share more with you about the objectives of the others in the coming months.

2018 is going to be a year of renewal for me. Will you join me? Will you share your (big picture goals) or your (specific) objectives with me? You can either comment on FaceBook, in the comments section below, or you can send me a message or email. When we make our intentions known to other people we are putting a stake in the ground. Why don't you go ahead and plant a stake today?

If you are new to my blog, please reach out to me and let me know. If you've been here from the beginning or for a while, thanks for sticking around!

Make it a GREAT day!!