where wildly different is perfectly normal
Living IRL
Living IRL

Living IRL

I was having a conversation with Andy the other day, discussing what life skills he would need to have to be a productive adult in today’s society. He eventually just sighed sadly and said, “Life is hard.” I managed to convince him that life is complex, and that’s ok, and that he’d be fine.

But life is hard. Damned hard. It’s hard for everyone, and sometimes hard takes over and that’s all you can see.

We’re finally moved in and settled. And, on cue, my body looked around, saw everything was pretty much cared for, and screamed “I’m off duty, bitch!” as it went careening off track. The last several weeks have been one day after another of I don’t give a shit about anything anymore and why am I so tired? and well, that didn’t get done again today and I can’t continue to live like this what the hell is going on?

Several doctor visits and lab tests later and still no real answers. My thyroid and iron levels are lovely (they smiled and winked at the doc), I don’t have Lyme disease, and other blood tests all came back normal. Right now the two contenders are sleep apnea, chronic fatigue syndrome, or both. Imagine my delight, but not surprise, as I’ve collapsed from exhaustion at least twice in recent memory. I won’t be surprised if the answer is both. My first thought in the morning shouldn’t be “I can’t wait to go to bed tonight” after a solid 8 hours of passed out dead to the world sleep and my last thought at night shouldn’t be “oh god please let me wake up rested for a change.” I feel like my days are passed in a knot of just get through this even though you’re exhausted and can barely function. There’s little joy in anything these days and yes, I am back on anti-depressants. They’re helping, but it’s only been a few weeks and the exhaustion isn’t doing much to help manage what I’ve finally acknowledged to be a permanently whacked-out chemical imbalance in my system.

But wait! There’s more! My unconscious habit of sleep-clenching my teeth until they crack has landed me square into root canal land! Jealous? The ibuprofen I was pounding because of the tooth pain (and resultant sinus headaches) ripped hell out of my stomach (as did the antibiotic for the accompanying tooth infection), which did nothing for my worsening depression (there is a gut-brain connection) and continued exhaustion.

But you look so healthy! Invisible is not fictional, folks. I’m bloody miserable. Life is passing me by and I’m too tired to much care. Or rather, I do care but am too exhausted to do anything about it. Because if I go out and seize the day and do something about it I’m on the couch the next day snoring after lunch or walking into walls as I bitch at my family for breathing.

In the next several weeks I have an appointment with a dentist (joy…rapture), a neurologist (for a sleep study), and a gastroenterologist (the stomach pain isn’t just because of ibuprofen and has been going on since last summer, and so help me if he insists I go back on gluten so I can have a proper endoscopy for celiac I may lose it in his office). I can’t accept “it’s just stress” anymore. Yeah, I have a lot of stress, but when you look at it objectively it’s not as much as in the past and I’m managing it a lot better. Something else is making it unnecessarily harder.

This is all a very long-winded way of explaining to the two remaining readers of this blog that 1) I’m not dead, just unable to function right now, 2) word making hard and funny no there now, 3) what energy I have is being spent living in real life (for example, I’m soloing with our wind ensemble in a few weeks, and I’ve been practicing like a fiend in preparation), and 4) if twice-exceptional is gifted plus something in a person’s wiring that interacts and interferes with that giftedness…well, then I might need to start considering how that may be playing out in my own personal wiring, especially given the family history.

But that’s a thought and a post for a different day. Today my energies are being spent towards just living IRL.


  1. Ev

    Sorry it has been so tough for you. Having been there with pretty much everything you describe below, would like to suggest some things.
    1) go see a naturopath doctor that is trained at Bastyr University, a good N.D. Will seek the root of the problems and you can avoid a lot of the Dr.visits to start which often end up with no results. ND can also check allergies, hormones, and give you nutricuedicals 2) ibuprofen may be making you tired, it puts me right to sleep 3) move your body each day, even in bed you can do this, start by stretching and leg lifts each day. Exercise gives energy, it is amazing how much. Also the change of scenery helps so much. Gradually move to a yoga DVD then walks each day. 4) delegate chores to help with stress…stress is most exhausting. 5) green tea during the day to avoid caffeine crash 6) do something good for yourself every day

    I had experienced what you describe for a couple years, and then my thyroid numbers went haywire at 41, now on meds with much improvement. I got off all foods i am allergic to, worked on gut with probiotics, take hormone balance herbs. I did have a bad case of Lymes many years ago. The thing that continues to helps me most is moving my body, I hike 1x/week and walk or run when my daughter is at clubs/classes along with finding calm and the positive of every ridiculous circumstance and dreaming a little bit, even when I had to make coffee and get back into bed to drink it so I could move along. You are not alone and you will get through this! e.
    P.S. I love your blog!

  2. Kishari

    I felt exactly that way for years. My doctors tested me for cancer, thyroid, chronic fatigue, all of the above. It turned out to be allergies–both environmental (dust, pollen, grass, mold, pollution) as well as food allergies. When your body is fighting all of those 24/7, and combined with stress (which doesn’t help anything, unless you’re running from a tiger) it can be debilitating.

    Since you said you’ve moved recently, are the flora and fauna considerably different from your previous home? You could be more allergic to those than your old place. (I feel terrible in the American south in the spring because of the combined mold and the prodigious pollen.) That’s a start. And then what I discovered is that there is a correlation to food allergies–if you’re allergic to ragweed, it makes you allergic to chamomile, cantaloupe, other melons, etc. And your body gets exhausted from fighting everything at once.

    If you’re already doing the medical circuit, add one to a good allergist who can do skin prick tests. Just blood tests aren’t as accurate. Email me with questions. Good luck!


    1. Jen

      Kishari, we only moved a few miles away, not that different. I’ve also dealt with fatigue for several years in two states (we moved to IL from CO four years ago). But I do wonder if there’s a hidden allergen making things worse. Gluten exhausts me like this, but it’s unlikely I’ve been glutened.

  3. You might appreciate The Spoon Theory from But You Don’t Look Sick. 🙂

    I’m sorry you’re miserable! Crossing my fingers for you that it’s sleep apnea since that is so treatable for most people.

    1. Jen

      I do know The Spoon Theory, and it’s spot on. I don’t feel like I’m that bad off (most days), but on the bad days…yeah. I really do think (hope and pray) it’s sleep apnea. I already fell asleep on the couch today before lunch and I could use another nap. :p

  4. Karin Cornell

    I found a link to your blog post in The Gifted Family and thought maybe I should write.

    I am so sorry you are going through such a tough season. I get it, I do, because that’s been my life since 2001. I want to encourage you, but the truth is that I don’t even know how to be my own cheerleader. I wanted to write to say a cliched “you’re not alone,” because I know sometimes that helps me cope a bit when I feel like nobody gets it. I also wanted to write to offer annoying medical advice. Have you tried…? Because every chronically ill person loves that.

  5. Tanya

    I’m so sorry that your health has taken such a turn. I developed CFS in 2005 and whether or not you have CFS, the symptoms and the intensity are just so hard. Whatever is going on, I hope you find something that helps you on the road to feeling better soon.

    Thanks for your blog, no matter how often you post. Your writing makes me laugh.

    1. Jen

      I won’t let it be CFS. 😉 I’m going to make it be sleep apnea and treated with a funky machine while I sleep. Because NOTHING is as sexy as a middle aged woman with a bite guard and a CPAP machine. LOL!

  6. Lisa

    Sounds like what I went through 3 years ago. Could not even go up the entire stairs without resting. I’m fairly fit (some of tepee time 🙂 so it was perplexing. End result….CPap amd no more wine fixed it. :-). Hang in there – the light at the end of the tunnel will shine for you soon!

    1. Jen

      I am on my…count with me now…third bite guard. I chewed through the first two. 😮 And yet I still clench like no one’s business, still waking up in the morning with sore teeth and jaw.

  7. qH

    Oh, to have to deal with the invisible disease syndrome. 🙁

    Glad you’re going the neurologist route for the sleep study; kH has two sleep disorders and it requires legal speed to get and keep him awake (but which doesn’t help the stress much, though it wasn’t a big deal until work blew up). He takes a pill around 5 AM, usually falls back asleep, and then can get up in about an hour. Usually.

    I have a gastroenterologist who diagnosed me with something (Barrett’s Esophagus) while I was still cruising on Versed, so my husband was the one who told the perinatologist years later about the reason I take Prevacid (2x the OTC strength, 2x a day, and pain if I forget a dose), preauthorization required once a year. Oh. I didn’t realize I had a THING. “Why do you think you take it?” “Because I’m in excruciating pain if I don’t.” “And why….?” “Shut up.”

    GOOD LUCK with your concert. Of course you will rock your solo! I just hope you get some relief from the pain and the exhaustion soon.

  8. Nanette

    My heart reaching out to you in empathy, that’s my life. I can handle the ordinary – CFS, apnoea and need for antidepressants, but gut problems nearly killed me, literally. Renal failure, septicaemia and atrial fibrillation finally forced investigations over three months and after 6 months of GI problems. Biopsy with endoscope revealed Microscopic lymphocytic colitis, possible causes included stomach bug OR NSAIDS (ibuprufen). Treatment with a few months of sulfasalazine saw that problem fixed. The other issues remain but feel like nothing after 12 months of feeling near death. Best wishes to you, speedy recovery! I have no idea how you have any resources to commit to a performance but good on you, hope you shine!

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