Straight Outta Spoons and Chronic Illness

straight out of spoonsThis weekend was my birthday!  What an amazing time it was!  My best friend sent me this tank and it’s a perfect way to describe me after the celebration.

After traveling, staying out late and having (gasp!) a few celebration drinks I was Straight Outta Spoons!  I just wish I could go through an event without being totally depleted.

With this said, I’ll use my spoons on family, fun and celebrations any day!  It’s the days that I use up my spoons for doing mundane things that gets me really frustrated.

Not familiar with the Spoon Theory?

Here’s how it applies to my life and explanation on how it may applied to yours.

Thank you for all the presents, texts, calls and social media messages.  I’m so lucky to have you all in my life and looking forward to another year filled with joy and discovery.

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How to travel with a chronic illness

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After my Lessons your children learn or miss on vacation post, I was asked how I can travel with a chronic illness.  Not easily, is my answer.

As always, I prepare….

I saw 3 doctors the week before I left.  I was on a 20 day antibiotic, taking sinus meds, was treated by an acupuncturist, got a massage, made trips to the pharmacy and had a follow up the week I returned home.  I was able to make it until day 4 before my migraine spiked.  Typically, I get a migraine on day 2 so this was good for me.

I had a suitcase and carryon filled with natural products that I use.  I didn’t take a picture but check out my reviews and it will give you a good idea of some things in my purse.

I had a few days of migraine but only my evenings were consumed with pain.  I was able to stop a level 7/8 from going to a 10 and was able to enjoy the next day at a reasonable level.  These are all victories for me!!

As for returning home….

I have now had a migraine for 12 days straight with no relief.  My pain fluctuates between a 4 and 7 most days but mostly is a constant never ending full body fatigue and heightened stimulus sensitivity with brain pains. My cravings have been out of control and I’ve been packing on weight that makes me even more uncomfortable. 

It’s hard to describe to a non-sufferer, but I’ll just say it’s tough mentally as much as physically when I am in a cycle that isn’t being broken at all. It’s just this wet blanket over me that I really only feel in my down time.  I’m a busy teacher and mom and have been able to do these well but the second I need to do anything other than childcare, I just don’t have it in me. 

my spoons

Priorities of my spoons is the best way I can describe it.  I had to cancel plans this week, was like a rag doll this weekend and generally just felt crappy since I’ve been home.

Traveling comes at a huge cost for me but one I’m willing to pay.  When I live with a migraine daily, traveling and spiking it seems bad but I’d rather get a few days of glory than a week missed in my hole.

Here’s some good examples on how I feel this week: 

 

Oh the joys of traveling

One step forward two steps back

When everything stops working

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How do you get through traveling, before or after? 

Why it’s important to be connected to a self care movement and be a self care advocate

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I was approached by SelfCareMovement to share why it’s important to be connected to a self care movement and be a self care advocate.

First, what is the self-care movement?
“The mission is to transform perspectives about chronic illness and the way we manage it, to celebrate the greatness in ordinary accomplishments that patients face every day.”
“When people think of chronic disease, they typically think about the medical aspects of managing and coping with it. The less palpable aspects of everyday life with a chronic illness are often left unspoken about.” (see spoon theory)
Secondly, why is it important to be part of this movement and advocate?
That answer is a bit more complicated and ongoing.  I guess the simple answer is, if I don’t take care and love myself, my health will dramatically fail.  And if mama’s not well, the family can’t be its best.  So I take care of myself for myself.  I also do it for my kids, my family, my friends and my coworkers.  But the bottom line is, self care is for me to be able to enjoy those people, be with those people and be there for them at my best.
This is why I think it is important to advocate for self care.  As a mom, wife, and all those other roles I play, I have put myself last.  Putting myself last ends up triggering me and making me sick.  So I have learned that by taking care of myself takes care of them.  I advocate to be an example and reminder to those who don’t put themselves at the top of the list.
I post pictures on Instagram that I hope inspire healthy living, mind, body and soul.
I tweet and retweet migraine and chronic illness information to spread awareness and knowledge
I blog about My Migraine Life to show my readers that life is full of suffering and growth which can turn into something beautiful.  I try to be positive in the dark times and lift those up who need it.  We all go through a rollercoaster in life and being a positive light as a migraine sufferer and mom hopefully brings hope and inspiration.  I find great inspiration from comments, shares, likes and support I get from sharing my stories.  Knowing that I’m helping is very rewarding!
“Self-care is about experiencing greatness in the ordinary and simple day-to-day activities that help people feel better despite the challenges of illness.”
— Grace Soyao, Founder & CEO, Self Care Catalysts
Some examples of what I do to feel better despite migraines are:
  • Working out.  Walking, hiking, yoga, elliptical, stretching
  • Drinking lots of water.
  • Eating well.
  • Quality sleep routine
  • Acting like a kid again.  Playing, listening to music, singing,  games, sports, art, reading, and being creative
  • Pampering myself. I love massages, Espom salt baths, saunas and mani/pedis
  • Snuggles.  Touch is a powerful thing.  Tiny arms can give big  love and furry friends can be therapy.
  • Strong relationships.  Weather it’s date night, girls night out, family dinner, coffee talk or a quick chat at the water cooler.  Having positive people that lift you up important for self care
  • Vacation. Long, short, near, or far.  Feeling like I have gotten away changes my mentality
How do you connect to the Self Care Movement?  How do you advocate for yourself with self care?  Your ideas may inspire someone to take better care of themselves
For more information on Self Care Movement go to:
Website
Facebook
Twitter
Instagram

Spoon Theory and My Migraine Life

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picture by @mymigrainelife

 

Have you heard of the spoon theory?  The spoon theory was written by Christine Miserandino (www.butyoudontlooksick.com)  It started with a conversation she had with a friend about being chronically ill.  It applies to so many different types of people and has become common verbiage as us “spoonies” go through life.  The conversation was how “normal” people get an endless number of spoons or an abundance of them each day.  As a spoonie, we are only given a few and/or use ours more quickly.

Each person has their set number of spoons.  Each event in life requires spoons.  Getting out of bed, walking to the bathroom, going to the bathroom, washing hands, brushing teeth, putting on deodorant, putting on makeup and so on.  Imagine, this is only the first 5 minutes of a day and some spoonies may already have used up their supply.

A person is given spoons which reflect their energy.  Every event is thoroughly thought through on how and where to use spoons.  While getting out of bed may use up one spoon for a “normal” person, it takes 3 for me.  While buttoning a shirt may not even take a spoon from you, a person with arthritis may use 4.

Each person gets a different amount, uses a different amount, and requires a different amount for each task.  The whole point of the spoon theory is that people who are chronically sick have fewer spoons, use them more quickly and run out fast!  Some days I feel like I’ve used my spoons by 10:00am and still have a long day ahead of me.  On those days I feel like I steal spoons from my next day leaving myself more depleted than the day before.  This borrowing makes me exhaustaed,  worn down and triggers a migraine.

The only way I can recoup spoons for my next day is using less spoons in a day and resting.  This is often seen as lazy  and that drives me crazy.  My resting is saving spoons and allows me to be use them later.  And let’s be honest, I don’t get a chance to rest that often therefore I’m not saving much. I’m not lazy, I’m building and saving my supply.

So how do I deal with having a handful of spoons in a world that requires thousands?  I rest, I pace myself, I prepare, and I plan.  My husband used to get up for work and leave.  Now I have asked him to get the kids out of bed and start them on breakfast.  This takes him 5 minutes of his day before he heads out the door but saves me a few precious spoons.  If I am able to sit and drink a cup of coffee without bouncing back and forth from the refrigerator a few times, I save spoons I need for the dreaded battle of getting dressed and out of the house with two small children.

At the end of the day, I ask him to help with bath time.  Bath time uses way more spoons than I have in the evenings.  I am low or out of spoons, plus a loud bathroom, cranky kids, and no spoons to use seems near impossible.  Drying off, lotion, brush teeth, potty, read books, hugs and kisses (I always have spoons for those) and more.  The last hour before my children’s bedtime is by far the toughest time of my day depleting any supply of spoons I have rationed for my day!

I do small things each day to help conserve spoons and help for the next day.  It’s all about pacing myself and preparing for how I’m going to use each spoon.  It sounds crazy, but that’s the life of a spoonie.

Where do you use your most spoons?  How do you try to conserve or prepare?