Too Close to the Sun

A few years into my mysterious illness, several doctors insisted that increasing my exercise would help. At the time, I was attending studio yoga six days a week. Hmm. Clearly, that wasn’t enough.

So, what did I do? I joined a bodybuilding gym and hired a personal trainer. Oh, but that’s not all. I also signed up for an intense fitness competition, alongside hyper-muscular men and women preparing for a physique contest.

When I decide to do something, I’ve always been one to go full-boar. If exercise would help, I wasn’t going to simply walk the neighborhood. I was going to lift heavy, throw tires, and do burpees until every muscle in my body burned. I was going to recover.

I pushed my my body to it’s limit. And I pushed it too far.

By the end of the fitness competition, around Thanksgiving 2017, I couldn’t walk from my bed to the bathroom without my legs shaking violently and giving out. Needless to say, the doctors were wrong. Exercise did NOT help.

Six years later, I still have my progress pictures from that competition saved to my phone. I recall the immense pride, as I pushed my body through the uncharacteristic pain, convinced I was promoting recovery in my body.

And I recall the crushing sense of defeat when I realized that I had made a mistake.

Just as Icarus took to the sky on his glorious set of wings, I too flew too close to the sun and then tumbled into the sea and drowned. I suppose the only difference is I didn’t have Daedalus issuing me a warning. I didn’t understand the risk.

Every few months, I find myself pulling up those weekly progress pictures. This picture represents the point at which my mild fatigue plummeted into the severe category and my life began falling apart. You can’t see it here, but I was beaming when my trainer took this picture.

I find myself staring blankly at my old body several times per year, yet I’m not sure why.

Am I grieving my loss of physical fitness? The ability to do things I once loved, such as hike, lift weights, and teach yoga? Do I regret pushing my body and ignoring it’s now-obvious signs to slow down? Am I lamenting the loss of muscle tone and the confidence to wear tight-fitting clothes? Do I miss the belief–though it was an illusion–of good health?

Or is it quite the opposite…

Am I inspired by what I was once able to accomplish? Is my admiration also my motivation, and my reason to keep pushing through life’s challenges? If I was once fit, toned, and physically healthy, my body must still have that muscle memory tucked away somewhere, right?

When this picture was taken, I was confident that I was on the road to recovery. I could see no reason to believe otherwise. I had blind faith in my body’s ability to heal.

I don’t have the luxury of concerning myself with physical fitness, as my ATP production is stunted and my body does not tolerate any exercise beyond walking at a slow pace on a level surface. Instead, my focus is on eating well, supplementing nutritional deficiencies, and getting adequate rest.

I still have the lean, boyish figure. It’s just softened at the edges. And I’m realizing as I write this that I don’t miss the physicality of the body I’ve lost. Instead, what I miss is that unfounded belief that better health is just around the corner.

Next week, I anticipate receiving a new set of mycotoxin labs back. From there, I’ll consult two physicians and, hopefully, start a heavy-duty anti-fungal medication to address the suspected systemic fungal infection that has been plaguing my body for eight years.

I’ve been pulling up this photo a lot the last few weeks. After years of disappointment and letdown, I am clinging desperately to that fanciful notion that perhaps this treatment will be the one that works.

The greatest challenge when facing a chronic condition is the balancing act between hope, realism, personal accountability, and action. We must accept our bodies’ limits, take responsibility for solutions that may improve our health, and exercise a reasonable level of trust that things will get better.

Where I was in this photo embodies just that. I was soaring high, just before the balance was disrupted and my makeshift wings began to melt. Why do I keep pulling up this photo? I think, for me, it’s an inspiration to keep going, but also a reminder not to fly quite so high this time around.

41 thoughts on “Too Close to the Sun

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  1. Your level of introspection is amazing. I wish I was as self aware. I pray that the two physicians and meds set you on a good road to recovery and good health πŸ™Œ Your body may not be exactly how it was (then again, whose is?) but it really sounds like you’re much more informed this time around!

    Liked by 4 people

    1. Thank you, Yari! I’m feeling hopeful as the next month or two begin to unfold.

      The great thing about blogging is we’re all walking different paths and can learn from and be inspired by one another. You’re a bright light in my feed and I always enjoy reading whatever you have to share! 😊

      Liked by 1 person

  2. “The greatest challenge when facing a chronic condition is the balancing act between hope, realism, personal accountability, and action. We must accept our bodies’ limits, take responsibility for solutions that may improve our health, and exercise a reasonable level of trust that things will get better. ”

    GREAT synopsis!!!

    Liked by 1 person

    1. Thank you, E.A.! It’s certainly not the journey I would have chosen for myself, but I have full confidence that I’ll get through it… and I hopeful that this leg of the journey will be wrapping up soon. πŸ₯°

      Liked by 2 people

  3. How confident are you in your diagnosis? Have you already been on the same medication all this time and nothing works? Do you know when and how you picked up a fungal infection? Are these te same doctor’s you’ve been seeing for 8 years? Have you ever been tested for Lyme? Are you in the UK? πŸ™‚

    Liked by 2 people

    1. Thanks for your comment, Melinda! 😊 I’m fairly confident in my diagnosis. I developed a fungal lung infection (coccidiomycosis) in 2015, which disseminated to the soft tissue of legs in 2018 and the systemic fungal infection did not resolve with anti-fungal medication. I did not know until recently that we had mold/fungus in my home, so my forthcoming labs will confirm what types of fungus are still in my body. Many of my symptoms are unique to mold
      I’ve seen dozens of doctors and been on dozens of medications and supplements… I tend to switch yearly if I don’t see improvement. I’ve tested for everything, so if this is a dead end, I’m not sure what I’ll look into next.

      Yes, I went don’t the Lyme rabbit hole about 5 years ago–I tested negative for Lyme (we don’t have ticks where I live, so that was a battle), but also did the nattokinase test to confirm since Lyme’s biofilm can sometimes make it undetectable in labs. If unfamiliar, nattokinase removes the biofilm from the Lyme bacteria, exposing the body to the pathogen, causing an adverse reaction but also verifying its presence. So, my physician had me break open some nattokinase capsules and redistribute into new capsules at 1/16 of the contents for two days, 1/8 for two days, 1/4 for two days, 1/2 for two days, then a full capsule. If one had a Herxheimer at any point in time (typically happens around 1/8 or 1/4), they should be tested for Lyme. I did not have a reaction, so Lyme was ruled out. I am actually in the US, not the UK. πŸ™‚

      Liked by 2 people

      1. If your mold isn’t confirmed on next appt., I would reach out to a Lyme Literate Doctor. Most GP’s only test for one-maybe three if you show a positive with the first. I’m not familar with the test. I had Advanced Lyme and went thru 18 months of IV Antibiotics. Lyme doesn’t go away it just goes in remission. Almost every state has ticks except Alaska, now if it’s a problem in your area you would need to look at a Tick Map. I hope they work it out soon, I know where your at and it can feel defeating but you’re strong enough to keep fighting.

        Liked by 1 person

      2. I know that mold is an issue, but I don’t improve with treatment, I will definitely revisit Lyme. I just checked the CDC Lyme map and, luckily, it appears there were just 2 cases in my entire state in 2020 (most recent stats), but anything is possible and I know that Lyme is sneaky. Thank you for your insight, support, and encouragement, Melinda!

        Liked by 2 people

      3. If only two cases, that’s great. What type of doctors have you seen? If you haven’t seen an Internal Medicine doctor, I would highly recommned seeing one. My Lyme doctors are Infectious Disease doctors, not all but many. It’s so frustrating to know something is wrong aand can’t get answers or releif. That sucks! There is an answer out there it’s finding the right doctor who won’t give up until they find what it is or send you to a specialist you haven’t seen before. You said you have mold in your house, have you had it removed?

        Liked by 1 person

      4. I’m seen all types of doctors — pulmonologist, cardiologists, endocrinologists, neurologists, dermatologist, immunologist, hepatologist, integrative, functional, naturopath, infectious disease doctors (8 of them, actually πŸ˜… … I was quite the curiosity here for awhile), an oncologist, and more Unfortunately, I’ve had a wide array of symptoms… through it’s rules out just able everything. I currently have a GREAT functional medicine doc and a brilliant dietician, who have both helped tremendously already, so I’m hoping we’re on the right path.

        The mold is another story. We own a condo and the HOA is responsible, but won’t remediate. We’re been out of the home for over a year now, staying with family, and I’ve seen significant improvements from simply leaving the environment so I think mold is at a least a big piece of the puzzle for me.

        Liked by 1 person

      5. Thank you! Looking back, I probably should have recognized sooner that developing symptoms across all organ systems was strange, and likely pointed to something systemic, like a bacterial, viral, or fungal infection… but at least I’ve ruled out all of the usual suspects. You take care too! I read a lot of research, so if I come across any cutting edge topics, I’ll be sure to pass them along. Hopefully, we can all recover and get back to feeling like ourselves again. πŸ’•

        Liked by 1 person

  4. What a great post! I think many of us with chronic illness are all too familiar with the feeling of having one foot on the gas and one on the brake as we inch toward the things that *might* help our recovery (or might make us worse). It’s such a delicate balancing act!

    Liked by 2 people

    1. What a great description, April! Yes, one foot on the gas and one on the brake is the perfect analogy. We want to move forward, but not overexert ourselves in the process nor get our hopes up too high. It really is such a delicate balance!

      Liked by 1 person

  5. Having gone through chronic Shingle for 10 years, I had many well-meaning people tell me I just needed to push through the chronic fatigue from not sleeping well through pain-filled nights, and just exercise more than I was to get into shape. I was already very fit then, but the answer was MORE. In my recovery, I learned that the real answer is often LESS! Until I learned this lesson, I kept having relapses because I wasn’t giving my body time to recover!

    Recovery time is crucial, it’s very positive, it leads to good results! Listen to your body, it knows a lot!

    Liked by 2 people

    1. I’m so sorry for what you’ve had to go through, Tamara. That sounds so much like my own experience. When I increased my exercise, I was already fatigued and sleeping poorly though not yet experiencing post-exertional malaise. Like you, I had to learn the hard way that LESS is often better, and my condition kept rapidly worsening until I gave myself permission to slow down and rest. Looking back, my body was giving me all kinds of clues that it was unwell… and I’m sad to say, I ignored them in favor of “productivity” activities. Rest is the foundation of good health.

      Liked by 1 person

  6. Hmm, there’s exercise and then there’s exercise! But I can imagine that along with natural inclination to push to the limit in all things, you were trying to make a statement to whatever had put you on this track of illness. Considering those odds, regardless of unintended consequences, you SHOULD take pride and inspiration in what you were able to accomplish. Wow! And, God, I hope these 2 docs can put you on a path to full recovery. πŸ™πŸ’•

    Liked by 3 people

    1. What an interesting thought, Jane. I think you are spot-on that I was trying to make a statement–I was at about 65-70% of my previous energy capacity at that time and I had this grand plan to get up to 110%. While things kind of went sideways, I’m still proud of what I was able to accomplish, and hopeful that I’ll be able to be active again. Thank you!! I’ve tried all kinds of treatment, but my gut is telling me this is the one. I’ll certainly keep everyone updated! πŸ™πŸ’•

      Liked by 1 person

  7. Erin, I admire the honesty in which you write – it’s a touching balance of realism and optimism. You’ve opened my eyes into the impact of mold and your journey to keep moving forward is inspiring to us!

    Liked by 2 people

    1. Thank you, Ab! πŸ₯° A few years ago, I would have never imagined mold could be such an issue, so it’s my hope that *someone* with strange symptoms might stumble across something I’ve written that will help them find their own answers.

      Liked by 1 person

  8. Hi Erin, for me, this is a perfect what you’ve written: “The greatest challenge when facing a chronic condition is the balancing act between hope, realism, personal accountability, and action.”

    An all too familiar tight rope I’ve walked/am walking, too.

    I hope you get some actionable results from your tests! ❀️

    Liked by 2 people

    1. Hi Belle, while I’m sorry that you’re also dealing with health challenges, it’s nice to know that I’m not alone in the experience. Thank you!! I’m feeling hopeful, and I will certainly keep everyone up to date on any developments. πŸ₯°

      Liked by 1 person

  9. I love the comments, Erin. And I second each of them…especially Ab’s thought about balancing realism with optimism. You inspire us…keep moving forward…we’re cheering you on! πŸ’•πŸ’•πŸ’•

    Liked by 2 people

  10. I think you’ve hit on the key Erin, acceptance. So often we have that longing, even a desperate need for just one thing to go right in our life, but the reality can be so different. You are a strong women and will face whatever comes next with an awareness of that needed balance, I am sure πŸ™‚

    Liked by 2 people

    1. Thank you, Deb. You’re absolutely right. I think acceptance is one of the most important lessons in life… while it’s not always easy, to okay with things going awry is one of the most freeing and empowering skills we can learn. Balance really is the key. πŸ₯°

      Liked by 1 person

  11. I also have cfs- quite severely although I don’t talk about it much. I completely understand how you can’t push yourself or your health will crash. Its a very difficult condition to work and live with. I can walk a few minutes on some days but that’s it. I really wish you well in managing your health x

    Liked by 1 person

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