Life in Contrasts

Life with dynamic chronic illnesses is a life lived in a series of contrasts. One minute, you are feeling like you are finally improving- hiking through the redwoods and soaking in the joy of being in nature again. 

And then the next moment you’re being rushed to the ER with your worst pain in 6 years and suddenly back in a world you’ve mostly been avoiding. A world of IVs and pain, a world of medical experts who don’t actually know much about your illness and don’t realize that telling you to take it easy on food isn’t the best advice when even water hurts. 

I knew something was up with my body a few weeks ago. Exhaustion, my full body chronic pain, constant headaches, all were reaching a fever pitch. And then about a week ago I started feeling nauseous and having trouble eating enough. I tried to write it off as stress, but it felt bigger. 

Then, Thursday morning on my way to work, I felt the start of an SOD flare. I called Ed in a panic, asking him to reassure me that everything was okay, that the flare wasn’t real, that it wasn’t going to get worse. And I made it through the day, but by Friday evening, I knew it wasn’t going away. Day by day, I went from 1500 calories to 800 to 300 to 0, hoping that if I just let my system rest, this would stop. 

But of course, it doesn’t work like that. Monday morning came and I was awoken from the pain at 2:30. But it was Evan’s birthday and he was leaving for Science Camp and I knew I couldn’t seem sick. Plus I couldn’t accept I was getting worse. So I got ready for work and started the drive. 

But by the time I got there, I was dry heaving, in so much pain I was whimpering, and immediately asked the office to find me a sub. And then curled up on some chairs out of sign, so mortified but in too much pain to do much else. I was too sick to drive so ed picked me up and drove me to the ER, where I got meds that helped the flare and an otherwise clear bill of health. 

And now I’m in possibly the worst part - limbo. I took the day off and am hoping to attempt liquid calories. But I’ve been here before and it’s always scary. Best case scenario, my system calms and in another few days I’ll be okay. Realistic outcome is that it’ll last 3 weeks, since that’s generally what previous flares have done. But this was my worst attack in 6 years, and my last terrible attack left me disabled and unable to eat for two years. 

And there’s just no way to know. Even a short flare may mean I have to cancel my summer plans. My edited, scaled down plans after my foot injury destroyed my pie in the sky, summer dreams. 

And so once again I’m laying on our outdoor couch, trying to tell myself this is enough. Being in the fresh air, looking at the trees around our home, seeing the sun breaking through the clouds. 

But I hate this. And I just want to get my life back. 

 

Transitions and New Identities

This week finally feels like I might be making a bit of progress, even though it’s been much slower than I ever anticipated. At least having the same experience with my knee taught me that it will never go as quickly as I think. It’s been hard seeing so many people still out running, accomplishing their goals, while I am still on the couch, fundamentally unsure what the future has in store for me. 

My biggest growth was restarting some attempts at cardio. Technically the podiatrist I saw discouraged any lower body exercises, but low impact feels relatively safe, especially with the boot on, and I’m keeping it minimal. 

I’m glad that I’m finding comfort in movement routines, in still moving my body 4-5 times a week and feeling myself getting stronger. I’ve never prioritized upper body strength and I am realizing that was such a mistake.

My whole life, I’ve struggled to stay vertical, for lack of a better phrase. It’s very hard and exhausting for me to sit upright for any real length of time, if I cannot lean back. I always saw this as a character flaw, being lazy, but in the past few years have begun wondering in my body structure lacks something. Surely other people doing feel overwhelmingly exhausted just sitting, or else our works would look so different. But the last month strength training has given me hope that perhaps building back and core strength could help create the structure my body naturally lacks, and might make that easier for me. 

(Watching my son crush his fitness goals when I’m stuck on the sidelines) 

It’s been really hard for my goal centered brain to not be working towards something tangible- to have no “10-week training plan” or goal race on the calendar. Goals right now are much more nebulous- build the strength I can so one my foot is fully healed, I won’t be starting completely over, feeling strong in my body, building myself up so I won’t fall as far when I hit my next chronic illness flare.

I desperately want to make an “I’m back” post as soon as I’m cleared to run again but I don’t even know if I will try to run again, at least for a while. It just makes me too sad when I have to stop. And my biggest goal is to figure out a more realistic baseline goal. I’d rather have lower fitness ambitions that I can maintain than be constantly flipping between highs and lows. 

This week will be a big test - I have a 2 mile walking field trip with my class, and am hoping to fully transition out of the boot. So far I’ve been only wearing a shoe at home, with light discomfort but no intense pain. Here’s hoping by next weekend I’ll be feeling more like myself 🤞🏻. 

 

A Month of Healing

 

This past month has been both brutal but also transformative for me, in ways I didn’t expect. I think last year, when I broke my kneecap, that was coming off a fairly (comparatively) good stretch of health and just a few weeks after my 50k, and it felt like more of an interruption in my identity as a runner. 

But this foot injury has been different. It has broken away that identity that had been slowly crumbling away since my first 50k back. Because while I have been telling myself I’m healthy and should take full advantage of it and do everything I possibly can while I still can, the truth is that this is a disabled body and I can’t outrun it or out-train it. And trying to do that has only made every failure my body experiences that much more crushing. Plus it’s literally putting so much stress on my body that it’s causing injuries like this one. 

They say insanity is doing the same thing over and over again and expecting different results, so why do I keep repeating the same crushing cycle? Rushing to start running again as soon as I possibly can, doing too much for this broken body of mine, because I’m so terrified of it starting to fail, and then bringing that failure upon myself? 

This injury is finally forcing me to reckon with who I am and look at how to get into the healthiest and strongest body I can develop, acknowledging my disabilities for once, instead of ignoring them, so that if and when it fails again, I’ll be in a better place to handle it. So I’ve started tracking my food to make sure I’m getting the proteins and vitamins and minerals I need to fuel and heal, and I’m learning how to consistently strength training so that my bones hopefully stop breaking. 

And this time I’m not counting down the days until I can run again because that isn’t the goal this time. Running can’t be my fix for my debilitating chronic pain and fatigue when it can be so easily taken away from me. I need to see what else can help. And strength training has a lot of research backing it for chronic pain and fatigue (and does seem more manageable in a flare). 

So that’s my focus. Getting strong. Getting back into nature as soon as I can, but slowly, cautiously. I need to find something that my failing body can’t take away from me again and again. And a way to keep my body working as long as possible. 

Really hoping that I find a better version of myself in the process.