Some musings during a hygge time of year: Zen and the Art of Being Really Sick

Fibromyalgia is odd in the way it causes fits and starts of energy.  Months of barely functioning and then, suddenly, a newfound ability to be in the world.  The inevitable question is, how much hope do you hold out, or rather, how to do keep yourself from holding out hope when life is simply unpredictable?

To live successfully with a disability of this nature depends on cultivating a Zen mind.  I repeat to myself many times a week, “everything is impermanent.”  This cuts many ways.  Zest for life will come and go.  Strength and ability will wax and wane.  The good times end, but so, inevitably, do the worst of times.

I also cultivate a combination of mushin and zanshin: being present in the world with a non-judgmental mind.  Now, this in no way relates to the way I scroll Facebook or consider politics; I’m just not that Zen.  But regarding the interaction between pain and functionality, I can be aware of my feelings without my thoughts spinning out of control.  “At this moment, I am fatigued,” not, “I am so tired and I’m always tired and I’ll always be tired and I can’t accomplish anything and life is never enjoyable and nothing ever works out.”

I’m not perfect at this.  Many times, with a new pain has come a certainty that I have a new permanent disability that is going to forever affect my life negatively or drastically.  Time and experience help with that, and allow me to notice the experience with an open mind, focused only on the moment.

So, for now, I am studying Spanish, making Christmas cookies and lemon bars, applying for proofreading jobs in hopes of feeling useful for a few hours per week.  And at some point, I’ll simply be in bed for days at a time, listening to books about the periodic table and Japanese history.

And that’s okay.  Because it simply IS.

Chic Fibro Girl Has a Night In

My SO was having a boys’ night, and after a day of veg and quinoa, it was time for a pizza and, I decided, some pampering.

Let me introduce you to the place where such witchcraft takes place…


Here’s a shot of the vanity I had made a couple of years ago, after struggling to stand up and do my makeup.  Standing was difficult on my energy, my arms, my neck from leaning in to the mirror, and my legs.  Sometimes I would sit on the floor in front of a full length mirror, but the light was poor and organization was impossible.  I love the design of this piece of furniture, but it’s huge and the maker painted it with some kind of unwashable paint (why?  Why would you do that?), so in the long run I’ll need to refinish the top.


The products I chose were

1)      Charcoal mask from an ipsy bag I received. 

2)      Deep conditioning treatment, from some sample service or another.

3)      Body Butter.

I ordered the pizza and set to it.  Here’s how it went.

1)      Take a shower, wash hair, apply conditioner and cover with shower cap;

2)      Consider shaving legs and deciding there’s no way I have that many spoons.  Even applying the lotion will be pushing it;

3)      Rinse off hair conditioner and pray I can get a comb through my hair.  I can, with considerable effort. 

By the way, do you all have one of these?

long comb.jpg

If not, you’re missing out.  On days when lifting my arms above my head is painful or exhausting, it’s length and angle are really helpful.  This is the kind of (accommodation) I want for us to share, those little adjustments that make something (combing my hair) possible again.

4)      Try to apply face mask. 

OK, what the actual?  I’m not much in to face masks and the like so this was a new experience for me.  First impression: it’s slimy and gross.  Second, am I a Mexican Wrestler?  How does this even go on? 


There appears to be a nose hole.  But that’s where the big ol’ pores are!  Maybe if I turn it like this…no…AURGH nvm!  I could YouTube this shite, but I can’t tolerate the cold, wet, slimy feeling on my face.

On a positive note, after I rinse my face it already feels softer from whatever oil was on there.  I guess I should have stuck with it.

5)      Apply Bliss Body Butter.  I always like this.  A Sephora employee told me to apply it before perfume so that the perfume will last better, and it seems to work.  For today’s result, my skin is less scaly. 

So all in all, I'm not always a great beauty blogger.  But ah, the pizza? The pizza is just right.