The Closet of a FibroMIGHT

I did something different for today--I made a video!  Step into my closet and see how complicated getting dressed with fibro can be!

A Salute to Heroes!

You know who my heroes are?  The people I see walking with canes or in wheelchairs who look otherwise healthy--those with hidden illnesses who are struggling but out there.  They haven't given up and they're not letting their illness keep them from participating in life.  Now, we all have days when we have to stop and regroup at home; when the pain is too much we have to decide if pushing is going to make things worse.  And that's okay.

I am a very high-functioning fibromight most of the time but even I have days when staying in bed is the best option.  And I'm no stranger to the motorized scooter.  Admitting that you can't walk through Target on your own and asking for access to a scooter is a hard thing to do.  It can be embarrassing, too, if the employee gives you "the look".  Then you have to deal with the looks and/or comments from other customers.  They don't get it.  Riding on those scooters is awful.  They are so slow and you sit there knowing that if you could walk you could go faster.  You can't reach anything from seated position, either, so you still have to struggle in and out of the seat to get what you need.  No one would go through all of that without really needing to.

I want to tell you about a couple of heroes I've seen recently.  The first is a woman I met at my boys' elementary school Bingo Night.  She was my age (mid-30s) but walking with a cane--a pink, sparkly cane.  I complimented her awesome cane and we got to chatting.  She told me that she has MS and fibro and her attitude is "if you have to use a cane it should be an awesome one!" I love that!  Between the cane and how stylish she was head-to-toe I was inspired.  She must go through so much and yet she is rocking it!

The other hero is one I saw at Disney World.  She was also young but riding a scooter.  If riding a scooter through a store is miserable, can you imagine maneuvering through Spring Break crowds at Disney World?!  She was calm, cool, and collected.  And the whole family was making it work.  I'm sure some people saw laziness or deception but I saw inspiration and dedication.  Those crowds were no joke.  It was hard enough to get through them on foot and I saw crowds refuse to budge for disabled or scooter-bound people over and over again.  

When I can I try to say something to my heroes--just a little word here or there to show that I understand.  People with hidden illnesses hear way too many negative things from outsiders so I think it's our duty to help lift each other up.  I know many who suffer have gotten to the point of further hiding their struggles because people can be so crappy.  I understand.  It's no fun to open yourself up for hurt.  I'm hoping, though, that by being transparent I can not only help others who hurt but open the eyes of those who don't understand.  Maybe if enough people can raise awareness of chronic pain, fatigue, and other issues we can get some real results--more treatments, breakthroughs in what causes it, or even just pull the blinders off of people and quit the shaming.  It's hard enough to suffer.  Suffering in silence and fear is worse.  I have decided to be open and honest about my issues with anyone and everyone.  If you want to know I will tell you.  If that honesty helps just one person I consider it worthwhile.

Perhaps we need a Hidden Illness Awareness Event.  I first thought of a 5K but really?  I can walk that but not all of us can.  How about a Hobble Wobble or a Scooter Rally?  :)  We could even have an alternate transportation relay; we could have canes, scooters, etc that participants would have to use for each leg.  I've thought about this for years--maybe one day I can put it in action.

Gentle hugs and may your day be FibroMIGHTY!

Oil...can...

So you know that scene in "The Wizard of Oz" when Dorothy and the Scarecrow find the Tin Man and he's rusted solid, squeaking out the phrase "oil can"?  Yeah, that's how I feel today.  My spine feels like a solid rod instead of individual vertebrae.  My legs feel weak and knotted.  Even my shoulders and arms are stiff and sore.  Why, you might ask?  The weather.  Yep, fibro has made me a human barometer and that, my friends, is a job I never applied for.  It is a rainy, nasty day.  This whole week is supposed to be more of the same, so I know this is how I will feel all week.  I can help my hormones and I can get sleep but I can't change the weather.

I know some of you can relate and others may be outsiders who are trying to understand what a loved one is going through.  I'm not relating my pain to garner sympathy, but to help others understand or know that they aren't alone. My shoulder and upper arm muscles are so sore that washing my hands makes them hurt.  Crouching down is fine but getting back up takes 3 slow stages and a lot of pain. Don't even look at my back too hard because my skin is so sensitive right now.  Driving is torture because it hurts to turn my neck, holding my arms up to the steering wheel hurts, my calf hurts when working the pedal, my lower back aches from the pressure of pushing pedals and twisting to drive, and the places where my legs meet my pelvis feel like they're being pierced with shards of glass.  I also find myself gritting my teeth so my jaw hurts a bit.  And being in this kind of pain (I rate it a 6) is exhausting.

Unfortunately, being tired and in pain causes Fibro Fury.  The prickly form of irritation that makes me snap at my husband and yell at my kids.  And that leads to guilt because I know it's me and not them--well, not entirely, anyway.  ;)  Ugh.  I want to calm down but every little thing seems huge in the moment.  I'm hoping that wine and some extra magnesium will give me some relief for tomorrow.   I try to keep my smile on but it's hard.  Some days are just like this--full flare fibro.  Coping is tough but I know my triggers and I've learned some tricks to help make it through.  Thank God for my wonderful, understanding, and supportive husband who knows to ignore my outburst and give me kisses and gentle hugs without any back patting.

Gentle hugs, my fibro friends!

Let's talk about spoons!

Most people who know me in real life have heard me talk about my spoons--usually that I don't have enough of them.  Some of you may know what I'm talking about but a lot of you probably don't.  There is a fantastic article about living with a hidden illness over on But You Don't Look Sick?.  Here is the link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.  When I was diagnosed with fibro I was directed to the "Spoon Theory" story and I am so grateful for that!  The story is a great way to help fibromights explain things to those without and it's a great way for friends and family to understand what a loved one is going through.  

The short version is this: people living with a chronic illness start the day with less energy and use it up more quickly.  The energy is represented by spoons.  As a fibromight, I am always low on spoons.  Simple things can use up more of my spoons than they used to and that is extremely frustrating.  It can also be frustrating for those around us, who don't understand why we can't go to one more store or why we NEED that nap.  We have to budget our spoons carefully; what we do one day can steal spoons from the next day.  Budgeting spoons is a delicate and irritating part of fibro.  It sucks.  A lot.

So what can we do about it?  Doctors will tell us to keep moving and exercising.  I think there is some truth to that but we also have to be careful not to overdo it and end up in more pain.  It's tricky.  And getting enough sleep is essential but we will still be tired.  My rheumy told me I need a minimum of 7 hours per night and I have to agree with him.  I noticed a huge difference from when I was only getting 6.  But I still need my weekend naps.  

People are often amazed at my energy level and ask what I do, so I will share.  #1, I am mildly ADHD and have naturally elevated energy.  Sorry, no trick there.  #2, supplements.  I take magnesium and a good multi-vitamin.  Nutrients are very important.  And #3, OrganoGold coffee.  You will hear me mention this one A LOT.  When I run out people can tell.  It is the single best thing I've found to boost my spoons.  I don't sell it so I'm not pitching my business here.  It is simply amazing!  My coffee dealer, Dannella, could give you all the details but here is what I know: it is a specially produced coffee with extra B vitamins and a mushroom complex.  It doesn't make me jittery and it gives me energy that lasts all day while boosting my mood, as well!  I like the Latte, either in a smoothie with bananas and strawberries or hot with vanilla almond milk and a hit of chocolate syrup.  If you are interested in learning more, here's a link; Magical Coffee .

I also want to mention a friend of mine who makes the cutest Spoon jewelry.  She has chronic pain, too.  I have one necklace already but I want more!  They also make a great gift for the newly diagnosed.  Nerd Chic Boutique

May you always have an extra spoon, fibromights!