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January 2018
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"Don't let your happiness depend on something you may lose." ~C. S. Lewis


PostHeaderIcon When your health gets in the way…

Full disclosure, true confession. This isn’t a FB post that’s about a victory, vacation or some delightful observation or political rant. I’ve hesitated to even share, because it’s a bit more raw and real than put together and strong. So many posts out there seem to intimidate at least some of us to only sharing when things are going swimmingly. And a lot of time they are. And a lot of time they’re not. Hell, I had an idea a while ago that someone should start a hashtag with pictures of all the nights we spend on a couch versus the nights out, the trips, the social times. #onmycouchwatchingreruns

The reality is, I have some pretty big goals I want to accomplish this fall. They’re incredibly and deeply meaningful to me. And right now, I don’t know how I’m going to do them. My health has taken a hit this summer and something in my immune system is yet again out of whack. Challenging to say the least. I’ve seen more doctors in the last 3 weeks than in the last two years. I’ve spent more time on my couch or on the floor than out for a run or a hike. I’ve cried more tears than I care to remember (including in front of colleagues this week who thankfully are incredibly compassionate friends too.) Sigh.

When your body is a breeding ground for auto immune diseases or disorders, you think you get used to living this way. That when there’s a flare up or a new diagnosis you just deal. Here we go again, go into auto pilot. But you don’t. Not me anyway. I’ve never taken this stuff lying down. Not for long anyway. And sure, for years I pretended or stuffed away the idea that my body and inflammation were like the Montagues and Capulets. Warring most times, silently stalked at others. For me, inflammation is like a poison in my body. It trips the triggers of my immune system and I don’t always know how, why, or when. The poison seems to seep insidiously and unchecked.

In fact, most people say “but you’re the healthiest person I know!” (first, you need more healthy friends, cause I’m not! ;)) And sure, I do watch what I eat and purposefully keep myself strong as I can. As the reporter said of me in June, when you’re betrayed by your body multiple times, you guard against it by keeping yourself healthy and strong. And this just proves that AI (auto immune) issues do not discriminate nor can be completely prevented. Even the best efforts can sometimes mean nothing when it’s determined. And this time around, while I’m not giving up, I definitely have noticed the extraordinary fatigue and overall difficulty even feeling strong. Joints hurt, internal organs feel stressed, and the runs I do attempt are slow and frustrating. Just last week I attempted a yoga class and while it felt good to move in that specific way, I couldn’t help notice the severe shaking/near collapse of my arms in certain positions that has never happened before. I chose not to be overly alarmed or quit but I felt it to my core.

And so, I keep on keeping on. I wait for more answers. I don’t like waiting. And no, while people say this with the best of intentions (I do know that), no news isn’t necessarily good news. For people with chronic illness and/or AI issues it can mean more questions (that go unanswered – I don’t enjoy baffling doctors), more fear, more rabbit holes to fall down into. Plus more medications to try, stop, try new ones – and dealing with the medications side effects. If you have had one AI issue, you’re far more likely to get another and another. Simply, get one, you’ll get three more. Since I was a kid, I’ve had some that are life path altering and lifelong and others that are temporary and mild. Even those that slip into remission or require medication to manage can flare up and down over time. Where, when and how these things manifest is still mostly a mystery to much of the medical community. Makes it super fun to be a patient. Makes you also sometimes lash out at people who don’t live in this kind of body or feel super snarky and cynical, in the midst of feeling scared and vulnerable. A few months ago someone said I had grit. I loved reading that. And I definitely do not always feel it. Not by a long shot. It’s scarier to own this than to pretend I’ve got my crap together. I don’t know much but I do know I’m doing the best I can.

What I heard myself say this week? If someone invented a way to get an immune system transplant, I’d try to be first in line. (that’s a bad joke, re ‘try’, cause you never know what your day will be like when you deal with this shit)

These AI episodes don’t make me a freak or weird or damaged goods – or less capable of anything. It means my body went into overdrive trying to fight something. It’s attacked itself. And I don’t know exactly how this episode unfolds yet. I do know I alternate between frustration, fear, resignation, giving up, fighting, annoyance, determination, vulnerability and much more. I hope for the best and worry maybe this is, this time/this episode, the tipping point to something worse. I monitor my health and modify when I can and still this can happen. It seems my body feeds on inflammation and as I said above, that’s a kind of poison to my system. And no, it’s not just stress related – frankly, when asked that question I hear that someone is asking if I’ve caused this because I’m not getting enough rest or have stressed myself out or some absurd thing. I guard my health rather fiercely thank you very much. Let’s be clear, one’s physical health can absolutely mess with one’s mental health. (and vice versa. of course I believe as many do the connection between mind/body health.)

What I am relearning is to be gentle with myself. To stop apologizing. To not compare myself to others. (including those who I know have it far worse than me for whatever reason and those fellow runners being featured for big accomplishments.) To not compare even my past accomplishments. The fact that just last October I ran the fastest I’ve run a race in 5 years or just this past June posted a personal top 10 finish time cannot be what keeps me from moving forward because the next round of races may not come even close to that because my body is “off.” Did I get cocky or take my health for granted? Perhaps, a little. I don’t know. I don’t think so. But even if I did this isn’t a ‘punishment’ for that. Do I need to be careful with my goals? Yes. But in the way they are precious not that I need to give them up. What I am doing is indulging in discipline that works for me and seeking more information and tenderness. And I’m trying everything, alternative to conventional.

Sometimes it feels a little like I’m being tested, like how bad do I really want this big goal I’ve set? It’s not going to be easy to obtain it seems. I really wish I was feeling the strength of last Fall or June of this year. But it appears I don’t get to coast into the finish line. Even my good luck race necklace broke for the first time – but at least I can take it to get repaired easily. Suddenly the meaning of it all is clarified again, crystal in the depth of “if I can do this…” and how to apply it to other areas. If I have to crawl on my freakin hands and knees to get across it, that’s what I will do. It may not be pretty or strong or graceful but it will happen. (Right?) That’s how it feels when I am able to get off the floor and go for a little run and think about October 8. I may be covered in more tears than sweat when crossing the finish line of #50 becomes a reality. Right now I think I would feel happy shock to cross it. And incredibly grateful to all the people around me supporting me, pulling for me, seeing me for ALL of who I am, not just my sometimes wonky health. The true reality is I don’t know how to not keep going – how many times I’ve thought about giving up but in actuality I never do. I’m holding onto that thought, that I persevere with relentless resilience. Even now.

Not sharing this to have anyone feel sorry for me. Not at all. Also aware that some will feel uncomfortable. I wrote this to be real and honest that I’m not always strong and this running journey is beautiful and isn’t anything I’m taking for granted. This is just a bump in the road. And, I don’t do fake-it-till-you-make-it well. I’m sharing it for anyone struggling with some kind of illness or surgery recovery or any struggle that might seem invisible to others but could be debilitating to them. And wouldn’t it be amazing if the stigma around AI issues or any other chronic problem was lessoned just a little? That understanding and compassion for living in a body that’s balance can be thrown off for any reason increases? I’m hoping that whoever is fighting today feels like you have a teammate in scared ol’ me. I’m more committed to somehow, somehow running these next few races and feeling some sense of strength, pride, accomplishment – no matter what it looks like. I’m also sharing this as a way to say thank you to those who are loving me through this all. Surviving in spite of. Thriving because of.

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