Sunday, May 11, 2014

international CFS/ME & fibro awareness day

today, may 12th, is a very important day in our little (but growing!) chronic illness community.  it is international chronic fatigue syndrome/myalgic encephalomyelitis & fibromyalgia awareness day.  although i have not been officially diagnosed with chronic fatigue syndrome, i do have fibromyalgia, and there are so many similarities between the two that it is often very difficult to tell the difference.  either way, both illnesses are extremely debilitating and have a profound effect on my life and daily functioning.

a few bloggers came up with the idea for a "blog bomb", or a mass of postings by those of us in the blog world that have these illnesses, to share our stories today so that we can bring awareness to these illnesses and how they affect our lives.  so little is known about how these illnesses are contracted and how they truly affect the body, why they affect certain parts of the body and not others, and we are still so far from finding effective medications and other treatments that allow us to overcome the symptoms and live a more normal life.  not only that, but these illnesses are very misunderstood and there is such a stigma attached to them, that we are just lazy and don't want to work, or that if we just exercised and ate a little better, we would be fine -- both of which are not true!  hopefully, through this blog bomb, we can raise awareness and hopefully some progress can be made regarding stereotypes and what having these diseases is really like.

my journey with fibromyalgia started when i was diagnosed with interstitial cystitis in april 2012.  they are considered linked diseases, so i was pretty quickly diagnosed with my fibro after my IC.  i try to keep an upbeat attitude about all of my health problems, because some of the stuff is just too ridiculous not to, but it definitely affects how i function in society, without a doubt.  for example, while most people pick a restaurant based on the quality or type of food it has, i offer my vote based on the level of comfort in its seating options (bonus points for padded chairs!), if i can get away with wearing my sweatpants that sort of look like regular pants, and how many judgmental stares i'm going to get if i show up wearing no makeup, unwashed hair, and end up almost falling asleep before the check comes.

i am so lucky to have found an awesome man who loved me before i got sick, and still loves me now, because he doesn't mind that most of our "date nights" include ordering the food online and picking it up at the restaurant, only to take it back home so that we can eat it from the comfort of our own couch, with me in my pjs, watching a movie on the tv instead of at the theater (because i have to pause it a billion times so i can pee, of course).  sure, it is really strange that most 27 year olds have closets full of high heels, fancy work clothes, and nice going out clothes.  what's my closet full of?  sweatpants.  fleece hoodies.  loose t-shirts and leggings.  oh, and some sweet furry slippers.  but hey, my guy loves me no matter what i am wearing, and for that, i know that i am blessed.

that's not to say it has been easy, however.  it is difficult to plan much of anything in advance, because i am never quite sure how i'm going to be feeling that day.  i have learned that i can only schedule one "big" event per week -- and by big, i'm talking one full day's worth of activities -- or two smaller days per week.  a typical week for me includes two errand days, which are me going out to do my grocery shopping and other errands for 4-5 hours at a time.  i make sure my errand days are on opposite ends of the week (usually mondays and thursdays) and i am pretty much too exhausted that night and the entire day afterwards to leave the house, so they are my recovery days where i don't do anything but sleep and watch tv or read.  i can't be out any longer than 6 hours at a time, or else my body shuts down, so i shoot for 5 hours (and even that is really pushing it).  on weeks when i have an appointment (like a doctor or a hair appointment), i have to cut out an errand day.  because my body is in almost constant pain, my sleep schedule gets easily messed up, and if i have an early morning appointment, it sends my body into a tailspin for a few days and it takes a while to recover from that, too.  so most of my week is either preparing for an errand day, or resting from an errand day.  when i have an event to go to, it takes a LOT of preparation and planning in advance to prepare my schedule to make sure that i am rested enough in order to go to the event and make sure that i don't crash too early before the event is over.  it's very stressful for me, which is why i choose to be a somewhat hermit and choose to spend my time with close friends and family who i don't have to explain things to.

one of the hardest parts of being mostly housebound is the "invisible illness" part of the disease, and feeling like i'm not a contributing member of society because of it.  obviously you can't see the swelling and pain in my joints (can you imagine if you could?! creepy!) so on the outside, i look completely "normal" -- which makes it hard for people to understand why i can't do things that others can.  honestly, sometimes even my family forgets on occasion, and asks me to do something that i should be able to do but can't, before they remember.  i totally understand, and i don't hold it against them at all, but it's very humiliating when it happens because i have to admit that no, i can't do that.  what person likes admitting that they can't do something they should be able to do?  nobody.  on top of that, society as a whole stereotypes people that don't work as lazy or incompetent, and i can't tell you how many times i have gotten the "uh, what do you mean you don't work?! how old are you again??" comments from people as they look me up and down.  because i am only human, this does eat into my thoughts on occasion, and sometimes i beat myself up, thinking that maybe if i did just work a little harder at my physical therapy i could get back to where i could start back to working part time.  but then i wake up in a fibro fog where i'm sitting staring at the tv for two hours before i realize i missed the entire movie and have no clue what happened and that probably wouldn't be good if i was at work when that happened soo yeah, maybe it is a good thing i'm not holding down a job right now.  but despite all that, it is something that i struggle with, because it's hard.  anybody that has an invisible illness struggles with that feeling, that you're not contributing to your family.  it is very tough, and so is feeling like you're invisible.  i often feel like going out dressed as a "sick" person, thinking that maybe if i do that, people will take me more seriously and i will get the help and consideration i need.  i am not someone who stands on rooftops and shouts about my illness to get pity from other people.  i started this blog to help others and so that others will find friendly faces that they can relate to, not to get pity or poor me comments -- that's just not me.  we all know people that do that, and it seems like those people are always the ones who get help, even if they aren't the ones who need it.

it is so frustrating to me when people tell me this.  it takes me so long to get ready to leave the house, so yeah i look good.  who wants to leave the house looking like a walking dead character?!  (see below, where i giggled for a good ten minutes.)  i wash my hair twice a week if i'm lucky, but usually only once because it just hurts too much to stand in the shower that long.  i have to take multiple breaks when doing my makeup (standing/sitting too long is painful), so it takes me about an hour to get my makeup done.  clothing is a huge ordeal depending on the day, because we have weather factors (thanks unpredictable northeast "spring"!), bloating factors (thanks IBS and IC!), comfort factors (which body part can't have pressure on it today?!), etc.  it takes me a while to get my clothes on, and then i still have to take the dogs out, grab my bag, make sure I have all my appropriate medications and all possible "just in case" items (and guys wonder why we have purses the size of small humans), put my shoes on, and everything else before i leave.  so yes, maybe i look nice leaving the house, and thank you for saying so.  but it IS frustrating to hear because it took me almost three hours to get ready just to go out to dinner, and you're saying i'm looking good, not as a genuine, kind-hearted compliment, but to judge me because i "don't look sick".  sheesh.  maybe i really should start going out looking like this walking dead character...

my body sometimes feels like one of those ukrainian eggs right after easter time.  the yolk is blown out so it has nothing but air inside -- it's really fragile, and you know that if you poke it too hard it's going to break.  i know some of you can relate!  my joints sound like an 89 year old grandma when i stand up, between the creaks and pops of my bones and muscles, and i feel like i run a marathon every night in my sleep.  just running a hand over my lower back can feel like hot pokers stabbing my spine (gotta love those trigger points) and i should probably buy stock in epsom salts since i buy them in bulk for the baths i have to take on an almost daily basis.  i shudder to think what my body is going to be like in 20 years, when it will be at the appropriate age for the problems it is having now.  i sometimes joke that i might need a bilateral hip replacement by the time i'm 35, but.. no, seriously.. yikes!

also, my joints have ESP... they can tell when it's raining.  well, they can tell when it's raining. (if you understand this, we can be friends forever.)  moving on...

my fibro has also wiggled its way into my diet, which was one of the hardest things because, yuuuummmm, food!  i have been a dump truck eater for basically my entire life (minus brussels sprouts, blech!), but i quickly learned that changes were coming when i got sick and my insides started feeling all jumbly.  i'm pretty sure that over the course of the past two years, i have tried just about every single food there is out there to try and reduce the inflammation in my body.  some have worked and some have not, but i have found a very good balance of foods for my body that works for me.  i strongly encourage anyone struggling with either IC or fibro to really look into how diet plays a role in your body's functioning.  i eat mostly whole, raw foods -- vegetables and fruits make up the majority of my diet, along with a good, steady amount of probiotics.  foods that are marketed as healthy for your body may not necessarily be so.  gluten-free is not always the healthiest for you, nor is sugar-free or non-fat/low-fat.  but most importantly, you need to find what is best for your own body, and it took me a long time to come to that.  i eat a lot of the same foods every day, but i do so because they help my body and make my body feel good inside, which is a great starting point.  i can always tell immediately when i have eaten something that is not good for me -- i don't feel good for the rest of the day, and my body doesn't function as well.  i don't mind eating some things that i may not have before, because i know that in the long run, it's worth it to feel better inside.  so it's not that bad after all.

another bonus of having fibro is that i can draw you a personalized, autographed copy of every single bump, pothole, and fissure in every single road in the city i live in -- and how best to avoid them.  now that's talent.

on the most basic level, i don't even remember what it feels like to not be in some sort of constant pain anymore.  i have always had a high pain tolerance (i have twice pierced my own belly button using just ice cubes and a thick sewing needle), but now i could probably break my arm and not even blink an eye because of the standard level of pain i am always in.  it's just second nature to me to always have an ache, stabbing pain, pinching, or something on any body part at any given time.  it makes the "little victories" seem even better now, like those rare moments when you wake up without any pain (or at least the 10 minutes until the pain sets in!) or when the tylenol actually freaking works for once and your headache goes away.. ahh, bliss!

having fibro has definitely changed my attitude on a lot of things in life, that's for sure.  it's not that i'm lazy, it's just that i have realized that people make mountains out of molehills about so many things that really are not worth it.  there are things that are truly worth being upset over, like horrible diseases that cripple you and confine you to bed all day.  is the dog peeing on the carpet truly that terrible?   in my mind, no, it's not.  i used to be that person who got upset over the tiniest thing, but this disease (and all my other ones) has really slowed me down and opened my eyes to so many things, and made me realize how many things just are not worth getting upset over.  i sit on the ground now, because you know what?  it's just dirt.  it'll come out of my pants.  i let the dog chew the goose poop because guess what?  it makes him happy, and that's all that matters right now.  i go out in public with sweatpants because it's really not the end of the world to wear them and me being comfortable is way more important than me running in to an ex-boyfriend.  it's just not worth it.  i wish i had learned that lesson so much earlier in my life.  i would have laughed harder, stressed less, and been so much happier.

and now, excuse me for having this oprah moment, but this is the one most important thing i have learned from being diagnosed with fibromyalgia, so please bear with me for this serious moment.

before i was diagnosed, i was your typical twenty something go-getter.  i was in a great job that i loved (and ache for every day, and yearn for the day i can return to), went out with my friends every weekend and had fun, partied, and went about my business.  i was a nice person, but i wasn't anything extraordinary.  then i got diagnosed with all of my medical problems and my world came crashing down.  i went from being on top of the proverbial world to literally being stuck in my bed all day long, writhing in pain and feeling like a prisoner in the body that had always gotten me faithfully through life.  i had nothing to do all day but read, watch tv, and think.  think about my life, my choices, my decisions, who i wanted to be, who i was, and what i wanted to become.  i started coming online and meeting the wonderful people in the online communities for chronic illnesses and seeing the faces of those that had these terrible diseases that i had and i realized, this can happen to anyone.  they don't discriminate.  they don't only pick ugly people, or pretty people, or fat people, skinny people, short people, tall people, white people, black people, asian people.  they pick moms, dads, sisters, brothers, nieces, nephews, cousins, daughters, sons, husbands, wives.  they ravage us all.  they make us all feel useless and helpless and awful.  they make us all cry alone at night, wondering what we did to deserve this, why do we have to be the ones to have this, all of us.  together.  so please, read this, and remember it.  don't judge us.  we aren't lazy, or stupid, or faking it.  we are doing our best in the face of a terrible, horrible illness that is doing its best to take away all that we have.  instead of judging us, remember this, and maybe we can all fight it together.

and on that note, i hope that you enjoyed reading about my journey and that it opened your eyes to some of the hard times that we CFS/ME/FM sufferers face on a daily basis. i hope that you see that we are not just lazy people who choose not to work, but that we are doing the best we can with what we have, and that you will also work on breaking the stereotypes and to help find better treatments for us.  if you have a chance, please check out the list of other blog posts for the #May12BlogBomb here so you can read other people's stories and what they go through as well.  i would love to hear what you think and any comments or questions that you have,  so please feel free to leave any down below!  :)

1 comment :

  1. Thank you Gabbi for taking the time to write such a heart felt and informative post. I agree there is a load of overlap between ME and Fibro. I have a good friend with Fibro and we often hit the same problems!

    Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
    Over 90 posts resulted, and links to the others can be found here:

    Perhaps we'll try this all again next year!


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