The Domino Effect of a Slight Change in Routine With Chronic Illness

Frustrated. Anxious. Exhausted. That’s how I feel today. Spent too long of a day in the office yesterday and it definitely came back to haunt me:

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It took me my usual hour-plus or so to decompress at home after work, but that meant I couldn’t sleep until more than an hour past my usual bedtime.

Didn’t sleep well at all. I was restless and woke several times during the night because of terrible pain in my neck and shoulder.

I disappointed myself at the gym this morning. I don’t know if it was the lack of sleep or the pain or both, but I definitely felt less than 100% and I could see it in how I performed.

Then, I nearly passed out post-shower this morning. Ended up having to get back in bed, where I slept like a rock until two hours later, when I finally had the will to get myself out of bed and dressed for work. (Fortunately, my morning gym time is early enough to make a two-hour morning “nap” an option.) Unfortunately, I beat myself up for “wasting” that time sleeping.

I got to the office roughly an hour and a half later than usual. I had let them know I would be late via text messages, but no one responded. Felt conspicuous.

My usual infusion of caffeine from my green tea and pre-workout energy booster did literally nothing for my overall mental haziness and physical fatigue.

Each task I’ve completed today has taken longer than anticipated and longer than usual. Brain fog means I process things more slowly and am more prone to make mistakes, which, in turn, means I have to double and triple-check every single thing. It’s the mental equivalent of swimming through mud — painfully slow and requiring an enormous amount of effort.

I will leave work today having accomplished less than I hoped, because regardless of what is or isn’t done, I know I will have to leave at the stroke of 5 p.m. to avoid compounding the issue I had today and missing any more time this week.

Leaving early won’t alleviate the exhaustion, just prevent it from worsening. I’ll have no energy to fix myself a decent meal tonight, so will end up eating something pre-prepared and quick (Taco Bell drive-thru, here I come!).

Stopping at the drive-thru to get burritos will mean when I get home — just a little bit later than I would have otherwise — I’ll feel rushed and impatient, trying to get the dog walked, animals fed and myself showered before I crash. There have been times the clock has run out and I wind up having to lie down with a cool rag on my head because of a splitting headache and because I am so nauseous and dizzy from the exhaustion and pain. I’ll push myself harder and faster than I should, trying desperately to avoid that worst-case scenario.

If my stomach is less than thrilled with my dinner choice (because my GI system likes to get in on the fun of the chronic inflammation that affects every other part of my body), it will rebel and I will be up past my bedtime yet again, waiting for it to settle so I can lie down without getting nauseous and without having to make multiple runs to the bathroom.

I’ll be frustrated and long for the release of journaling, which was once my common practice. But holding a pen to write for much longer than five minutes makes my joints ache and causes muscle spasms in my hand that make it impossible to continue.

All of this because I stayed to help a co-worker instead of leaving at my usual time.

And I worry.

I worry people will mistake my insistence on leaving “on time” for laziness or ambivalence. I worry they don’t believe me when I say I will pay for something as simple as staying at the office for an extra hour and a half.  I worry they’ll think I’m exaggerating or looking for attention. I worry they don’t understand just how chronic a chronic illness can be, that they’ll think I’m just a negative person who is always sick, sad, slow or hurting because I have a “lousy attitude.” I worry they’ll think I’m not a team player or I shirk my responsibilities. I worry I’ll be accused of taking advantage of the situation somehow and I won’t be able to counter that argument. Most of all, I worry this is the time the flare never dies down, that it’s just the decline into a “new normal.” And so, I am mentally and emotionally exhausted, too — on top of the physical.

I wish there was some way to allow people to experience what I feel in my body every day, but especially on bad days. I know there are pregnancy bellies and machines that can simulate labor contractions, so why not something to simulate the reality of a chronic invisible illness? A weighted body suit that constricts around random muscles at random times, features bullet-shaped protrusions that press into all the most sensitive areas of your body and occasionally delivers a painful electric shock in some random spot, lasting anywhere from two to 90 seconds. Added bonus points if they make a matching weighted headpiece that puts your skull in a permanent vice grip, making it hard to turn your head, see or think straight. And the finishing touch? Take an extended-release dose or two of an antihistamine or cough medicine that makes you feel drowsy enough you want to cry and can do nothing but think about how much to want to lie down – all day long.

I’m envious of those who don’t understand, but not bitter. There are just days — like today — I am so tired  of fighting it. I know unless you have to live with this, there is no way for you to comprehend the overwhelming struggles. That’s OK. It’s making me feel “less than” or shamed for the fact I don’t always win over my body that isn’t. So please, don’t minimize pain or invalidate my truth when I share it.

As the quote says, “Be kind, for everyone you meet is fighting a battle you know nothing about.”