one day – invisible illness awareness week

Now, before you run the other way, this is my last post for Invisible Illness Awareness Week.

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I had decided that I would make some notes about what one day is like when you are dealing with something like Fibro.

To be fair, this morning I realized that this was not a typical day for me. I had already committed to doing this, however, so I saw it through.

That said, what I realized was that it was a long week with travel for work and then a video shoot for work today – but it really wasn’t as a-typical as I thought.  My job and my life are very fluid, changing everyday with new tasks, challenges, and adventures.  While some weeks are quiet, some are not.  Today was not as off the norm as I originally thought, it was just a rougher one on the old body than others have been.  I took more pain meds than normal and I hate it when I have to do that.

So, if you have a few minutes, here is a quick look at what my day, living with Fibromyalgia, is like:

  • Alarm goes off at 5:30 – plan is to get up and do quick yoga and meditation.  My body is extra achy, so I hit snooze.
  • 5:39 – Hit snooze again.
  • 5:48  – Snooze – now my shoulders are screaming in pain.
  • 5:57 – Snooze – but I start to move more and try to get up.
  • 6:06 – Turn off alarm and start to rise.  I stretch my entire body, still lying in bed.  I twist,, turn, tighten, and release from head to toe.  I take a few moments to determine my mantra for the day.  I repeat it to myself, breathe deeply, and exhale.  I sit up.  I stretch again.
  • 6:15ish – I am finally standing.  I head to get my bath.
  • 6:20 – I run a hot bath with Epsom salts and start to get ready for the day.  I soak – too long.  I hurry to finish and careful get myself out on now very weak legs.
  • 6:45 – I head to make sure the boys are moving.  My feet and ankles, along with my legs, are in pain, making walking slow and labored.  I put a smile on, kiss and hug the kids and get them moving for the day.
  • 7:00 – Owen has a melt-down and we are dealing with the stress of that before we even get breakfast going.
  • 7:20 – I go to finish getting ready – I dry my hair and brush it quickly.  I cut it short a while ago – not for fashion, but for function.  I have been having enough issues with my arms that holding a hair dryer for an extended time to dry longer hair was painful.  I look at my placid reflection and go get dressed.  I work with the boys to finish them moving while Matt showers.  Thankfully he has taken charge, yet again, this morning so that I can get ready and head out a bit earlier than normal.
  • 7:40 – I am finally leaving – about 25 minutes behind schedule for today.  I stop and get gas, along with an iced tea and donut.  I know, not the healthiest choice, but I need food in my system to take my vitamins and meds and Owen was so off that I didn’t have a chance to eat before I left the house.  I eat a couple bites, not loving it – nothing sounds good or tastes good today – then take my handful of vitamins.  Every day I take: Iron, Vitamin D, Calcium, Vitamin B, and a Cymbalta in the morning.
  • 7:58 – I pull into the parking lot of our production company and get to work.
  • 8:30 – I am on a conference call while we are finalizing our shoot set-up.  I take my first homeopathic pain med for the day – everything still hurts.
  • 11:00 – second round of homeopathic…  my hands have started to ache and my right ankle is throbbing.
  • 1:30 – lunch.  I eat part of my chicken sandwich because I need to.  Eh.
  • 3:00 – another dose of homeopathic.
  • 4:00 – I have now been working on a concrete surface, alternating from stand to sit, walk, set, fix, create, and do for several hours.  Head to toe I am wiped. The “fog” is setting in and I am fading fast.  I take 2 Tylenol.  I try to avoid it, but we have about 2 more hours left and I know it will not be good if I don’t.
  • 5:30 – We wrap the shoot.  We pack up and clean up and load up to leave.  I am still smiling and laughing and joking with the guys, but I have been fighting off and pushing down the pain and the tears.
  • 5:50 – I get into my car in the parking lot.  Tears stream down my face and I text Matt I am heading out.  He and the boys are at the bowling alley – the kids started their afternoon league today and I missed it.  He’s getting them something to eat and then he has to bowl.  I will head there to grab them.  I fight construction traffic and rush hour (I have a hard time calling it that in Madison, after living in Chicago, but that is what it is.) My ankles and feet are SCREAMING at me the entire drive home.
  • 6:30 – I arrive to get the kids.  They finish eating.  I sit in a chair, in so much pain now that I am nauseous and the thought and smell of food around me is making it worse.
  • 6:55 – Home with the boys.  They get ready for bed – showers, brush their teeth, etc… – and then quietly read.  I lie on the couch like a slug, barely able to move.  I lie in a huge pool of pain and guilt about not being an active and participatory parent today.  Today I have let them down.  Today they have gotten none of my time.  This is what goes through my mind.  I know it isn’t totally true – but it feels true and it hurts like it is true.
  • 7:40 – boys are in bed, tucked, kissed, hugged, loved, and snuggled a bit.
  • 7:45 – I finally feel good enough to eat a little something, though nothing sounds good, so I make a PB&J (I know you are jealous), a cup of hot tea, draw another hot bath, pour in more Epsom salts, and crawl in.  I am literally eating a sandwich in the tub.  How classy is that?  Anyway…  I had to get into the water as fast as I could before my body completely gave out on me.  I eat the sandwich, drink most of the tea, and soak for a while.  Now – when I say “soak” what I really mean is this:  Picture a 6′ tall person in one of those smaller tubs you see where you can’t really stretch your legs out without sitting up completely or if you want my shoulders in, your legs from the knees down are out.  We are not talking about a nice big, deep whirlpool tub here.  Base model for kids, with 6′ tall me in it.  ****Light bulb**** A pic of a big soaking whirlpool tub is going on my vision board…  Ok, back to the log.
  • 8:30 – Dressed and have now taken 2 Tylenol PM so that I can hopefully sleep.  I lie down and type this from my bed.
  • 8:55 – I re-read this, spell check, add a photo and press publish.
  • 9:05 – Lights out.

That is my day.  I fought pain all day.  I smiled through every moment when people were around as to not let on that I was not at my best.  That can be difficult when what you want and need is to lie down and sleep for an hour.

I still work a full time job and most of the time it is doable.  Today pushed me.  Today hurt.  I am not sure what tomorrow morning will bring.  One of two options: either I will wake up feeling about the same or a little better OR it will be one of the truly bad days because I have decided this week to do way too much.  I won’t know until that alarm goes off and I have to decided:

Snooze or yoga?


Comments

one day – invisible illness awareness week — 1 Comment

  1. You described my day to a T, especially the ankle and foot pain, prior to me starting a paleo diet. CHA used to be pure torture. I still get the pain but not as intensely and when I fall off the wagon, I get all kinds of crazy pain. Like right now. This sucks. But hang in there. Keep trying to do what you’re doing!!!

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