but you don’t look sick

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Moving Past The Sting

Posted by Mildred Jane on June 28, 2013
Posted in: But you don't look sick, Friends, Gastroparesis, Life. Tagged: , , , , . 15 Comments

itshurtingagain

I will warn you up front that this is not going to be one of my more lighthearted posts.  I try as best as I can to stay upbeat about Gastroparesis and all of the curveballs in life that it throws you.  However, sometimes it is hard to move past the hurt.  In fact, it is beyond hard to move past the hurt of people that stems from finding out people’s true colors.

I have been extremely fortunate to be having success with my new plan to take on Gastroparesis.  My new eating plan (gluten-free, refined sugar-free, & caffeine-free), acupuncture, supplements, etc have given me a tremendous amount of relief.  I have been able to exercise again and have also switched to a job that saves me upwards of 10 hours in my car per week in addition to being much less stressful.  (Driving & heat are the two things that can still tank me faster than anything!)  Having all of this success in kicking Gastroparesis’s butt should have me in a happy place.  For the most part it does.

However, the one piece of Gastroparesis that I am still having an extremely hard time coping with is the hurt that comes to my heart.  The hurt that comes from being stabbed in the heart (and sometimes the back) by people that you thought cared about you.  The hurt that comes from people abandoning you when you become sick.  The hurt that comes from people not understanding how sick you are because you’ve become so good at hiding it.  The hurt that comes from them bad mouthing you to other people in your friend network.  The hurt that comes from losing those additional “friends” because you don’t have the energy to fight the bad mouthing.  The hurt from realizing that apparently none of them were your friends to begin with.  This is what I am dealing with today.

Today I am dealing with staring into the face of a splintered friend network all due to someone who can’t come to grips with how sick I actually am.  All due to someone who feels the need to be the loudest voice in the room.  All due to someone who apparently never had to struggle or never gotten his/her way.  It is excruciatingly painful to know that you have lost “friends” all because someone doesn’t understand, doesn’t take the time to understand, and feels the need to tell people how “selfish” you are.

I didn’t realize that grasping at straws to survive, try to have some semblance of normalcy, and to try to be able to hold down a job to keep insurance to pay your medical bills was being selfish.  If someone had cancer, do you think that they would be cut some slack?  Not so for those of us with Gastroparesis.  No slack is cut for us because people don’t understand what we go through.  They can’t fathom a life without the ability to eat so they like to pretend that it doesn’t exist.  They like to pretend that you can continue on with the same plans in life.  They like to act as though everything must not be that bad because “you don’t look sick”.

It still stings and baffles my mind at how hurtful some people can be.  You wouldn’t treat someone with cancer like this.  You wouldn’t treat someone waiting for a transplant like this.  You wouldn’t treat an amputee like this.  Just because we “don’t look sick” doesn’t mean that we aren’t sick.  In fact, I had no idea how sick I really was for almost 2 years until just recently.  I’m staring to come out of the Gastroparesis pit and am absolutely baffled by how I still functioned.  Looking back, I should have done a spell in the hospital but was able to keep going and keep trying to hold everything together.  Mainly due to this being what all GPers have a tendency to do.  We fight to live, so excuse us if we don’t have time to fight with you over things that have now become petty to us.

Fighting for the ability to eat makes fighting over anything else trivial, so excuse us while we don’t waste the precious bit of energy that we have fighting with you.  If that means losing you, then you were never a friend to begin with!  Just stop acting like you have been so horribly wronged.  Once you have lived a week dealing with this horrific condition, then you have earned the right to judge and bad mouth!

~Millie

Needless to say, I have a looooong way to go in working through letting go of this issue with several people.

What Diet Are You On?

Posted by Mildred Jane on March 15, 2013
Posted in: But you don't look sick, Diet, Gastroparesis, health, Inspiration, Life. Tagged: , , , , , . 2 Comments

waist

You’ve lost so much weight!  What diet are you on?  You’re looking great!

These are things that EVERYONE with Gastroparesis has heard at one point or another.  Everyone wants to know how you’ve lost weight so quickly and how you stay so thin.  They want in on the next latest and greatest diet fad.  Responding to all of this is a delicate situation.  On one hand, you want to take the opportunity to educate them about Gastroparesis (if you’ve accepted your fate & are ready to fight to make a difference.  more on this in future blogs).  On the other hand, you know they are not wanting to hear that the reason is that you can’t eat, you’ve been vomiting for days (maybe months) and that you would give anything to keep weight ON.  So what do you do?

My approach has always been to disclose as much as I feel like dealing with that day.  Some days I just want to go through the motions, get the day over with and therefore get in/out of this weight loss conversation as fast as possible.  Other days I am feeling fiesty and wanting to take the time & energy to educate.  It really all depends on the person, the day, the hour, the minute, and the second.  The one thing that is constant is that it is hard to hear that “you look so good” when you know it is because you are so incredibly sick and barely functioning.  It is hard for them to understand that you are so incredibly sick when “you look good”.  (Check out the blog on “But You Don’t Look Sick” https://adventureswithgastroparesis.com/2013/02/01/but-you-dont-look-sick/)

The flip side of this (that no one really talks about) is that you also go through periods of inexplicably gaining weight.  No one come rushing up to you saying “how did you do it?  how did you put all of that weight back on?”  However, it takes a toll on your emotions.  Your body is so out of whack and changing dramatically day to day that it is hard at times to feel comfortable in your own skin.  It is hard to feel confident when the pants that fit perfect yesterday are now following off and might not button tomorrow.

However, you have to look at yourself and say “I made it out of bed today.  I managed to wash my hair today.  I got out of my pajamas, so who cares if my pants are following off?  Who cares if my pants are unbuttoned under my shirt & no one can see?  I have accomplished a great thing today by going out and facing the world and continuing my life.  I am beating GP today, so take that!”

You’ve got to find a way to keep those pesky Gastroparesis depressive thoughts away and celebrate what you have conquered.  The more you celebrate what you have conquered, the more likely you are to say “Thank you.  I do not have a diet plan, but have a rare condition called Gastroparesis.  Let me tell you about it.”  Because knowledge is power and the more people we educate, the more powerful the Gastroparesis community becomes!

(Fortunately, my weight has been level for the past few months so I have not been asked about my diet plan since last spring!  However, I ALWAYS take an opportunity to politely educate others.)

~Millie

Images are Deceiving

Posted by Mildred Jane on February 27, 2013
Posted in: But you don't look sick, Energy, Gastroparesis, health, Inspiration, Life. Tagged: , , , , . 1 Comment

Anyone with Gastroparesis inevitably becomes a good actor/actress.  We learn how to put on the happy face and pretend that we are fine, when in reality we are not.  This has been the case for me over the past couple of days.

How I appear:

wonderwoman

vs

How I feel:

the-little-train-that-could

I am preparing for a multi-city trip which will be a combination of Gastroparesis Advocacy & a conference for my day job.  (More on these & the joys of flying with GP in blogs over the next few days.)  As I prepare for the trip, there are several items that need completed for my day job, for the advocacy work, and at home.  I must confess that I am about to reach my breaking point and keep telling myself “I think I can, I think I can”.  All the while, keeping up my appearance as Wonder Woman who can handle it all and do it with grace.

My latest tactic is not only lying to everyone else, but lying to myself that I feel fine.  I think that maybe if I pretend the burning in my stomach isn’t there that perhaps it will magically go away.  Deep down, I know that this is a horrible horrible plan and will result in a major crash.  I just keep telling myself that if I can hang on until I am safely on a plane Friday, that it will all end okay.  That somewhere over the course of the next 36 hours that I can magically finish all of these items.

Part of the reason I keep smiling is that if I tell someone just how sick I feel, they’ll tell me to slow down.  They don’t realize that if I slow down that it won’t make everything go away.  They don’t realize that it will just keep the stress of it all hanging over my head which makes it difficult to take it easy.  They don’t realize that you think this is the best way to keep from launching into a downward spiral.

Gastroparesis is a tricky thing to manage.  On one hand it is best to give in and take a rest, but the stress remains.  On the other hand it is best to rem0ve as much stress as you can, but this forces you to push your body beyond your limit.  It is a vicious cycle.

So I will do what I can.  I will continue working on a project for my day job with a hard stop at a certain time.  I’ll do some yoga to clear my mind and then go soak in some epsom salts.  All the while, trying to figure out how to put those pesky GP elves to work and do something productive!

~Millie

Being Sick Is Not the Same as Being Busy

Posted by Mildred Jane on February 12, 2013
Posted in: But you don't look sick, Energy, Gastroparesis, health, Inspiration. Tagged: , , , , . 7 Comments

Gastroparesis throws your entire life a curve ball.  EVERYTHING changes:  your diet, your sleeping patterns, your morning routine, your social life, your professional life, your level of physical activity, you name it.  I have scoured my brain and can not think of one aspect of life that does not change once Gastroparesis begins to take over.  As much as you try to continue being “normal”, it isn’t going to happen.  You are kicked right out of the fast lane onto a beaten up wooded path that not many people know about or care to find.  You have to learn how to navigate this path and hope that you can find your purpose life.  The purpose that you are meant to pursue while living through the ups and downs of Gastroparesis.  While on this path, there are many times that you feel like the image below.  You are unrolling the path by yourself and have no idea where it is going.

the-road-less-traveled

Perhaps one of the most frustrating comments that could be made to someone with Gastroparesis (or someone with any chronic illness) is the following:  I’m not sick but my life is busy too.  There are many reasons that this type of comment is frustrating.  The first is the insinuation that sick life is busy life.  Yes, it is busy running to and from doctors’ appointments (yes, plural doctors).  Appointments that tell you the same thing every time: there isn’t anything we can do for you.  (This is if you are lucky enough to have a doctor correctly diagnose you, which could take years.  More on this in future blogs.)  Yes, you are busy cancelling plans with friends and family so that you can vomit for hours or lay in bed with severe stomach cramping.  Yes, you are busy hanging out with the GP Elves while you stare at a wall because your brain has stopped functioning.  I guess this is busy and could be equated to the someone who is busy in the fast lane continuing on the path they set out for.

Another reason why this type of a comment is frustrating is that somehow this is a equal comparison.  Somehow choosing to live a busy life is equal to being dealt an incurable disease which is not understood and has extremely limited treatment options.  That somehow being busy with work events and social outings is comparable to giving the majority of that up to go to doctors’ appointments, explore alternative healing methods, or to be incapacitated.  I did not choose to have Gastroparesis.  In fact, doctors do not know what causes Gastroparesis for most of us.  This is called Idiopathic Gastroparesis, which is what I have.  I did not choose this life, but am making the most of it.  However, the people that make these types of comments choose to have a busy life.  There really is no comparison.

The last reason that I will discuss about why this comment is frustrating, is that once the frustration level settles down you realize that the people saying these types of things just don’t get it.  They don’t understand that your life has had an upheaval on a massive scale and that no part of your life has gone untouched.  They don’t understand that a basic function of life, eating, just doesn’t happen for you without significant planning.  They don’t understand that you are trying anything to barely stay afloat.  They don’t understand that you are trying anything for just a few hours of feeling better.  They don’t understand that you have to focus the majority of your time on how to minimize being sick.  They don’t understand just how often you are sick.  They don’t understand that you can’t shower because it will use up all of your energy needed for the day.  They don’t understand that you aren’t “busy” because you choose to be, but scrambling like a rat in a cage trying to break free.  Even if you can break free for only an hour, it will be the best hour of your life.

~Millie

But You Don’t Look Sick

Posted by Mildred Jane on February 1, 2013
Posted in: But you don't look sick, Gastroparesis. Tagged: , , , . 1 Comment

achystomach

Gastroparesis is only predictable in its ability to strike at any moment.  You never know when, where, or for how long but you do know that it will inevitably strike.  It doesn’t matter how many things you do “right” (more on this in future blogs), you will inevitably crash.

As mentioned previously, I have been working my way out of a flair, but this morning I woke up with extreme nausea and stomach cramping and began to worry I was about to go into a tailspin…again.  Sure, many people without GP have this happen at different points in their lives.  So what makes this any different?  The key difference for someone with Gastroparesis is that you have it happen almost weekly.  The nausea and cramping that we feel has been compared to morning sickness.  So for any women out there with children, imagine having morning sickness for the majority of your life.  Now imagine having morning sickness for the majority of life and knowing that it will never go away for more than a few days.

As a GPer you start to think that waking up this way is “normal” and that everyone must wake up in agony on a frequent basis.  You truly go through bouts so bad that you actually forget that the agony doesn’t occur for everyone in the world and have to remind yourself that what you are feeling isn’t “normal”.  You go about your day feeling extremely uncomfortable and worried that you are about to lose what little food you have in your stomach.  You go about your day because you don’t know any different.  You go about your day because what you are feeling must be “normal”.  If what you are feeling is “normal” then this must mean that all of your coworkers can power through it.  If they can power through it, then surely you can?

This is the thought process that prompted me to power through and go to work today.  If everyone else can work under these conditions then surely I can.  However, at some point in the day you look around and it dawns on you that no one else feels like they are about to double over with constant jabs to the gut.  You realize that when they look at you, they have no idea the pain you are in because you look “normal” on your outward appearance.  Then you hear the dreaded words that no one with a chronic illness wants to hear…”But you don’t look sick”.  This is often said with the intent of making you feel better, but it doesn’t.

You want to ask “what is sick supposed to look like”?  You begin to wonder if they believe that you are sick (more on this in future blogs).  You wonder if what you should do to prove how sick you are to them.  Should you take a short video the next time you are screaming in pain?  Should you show them the photo of the number of pills/supplements you take in order to eat solid food merely once per day?  Should you invite them over the next day you are in the bathroom for hours (yes, literally hours) vomiting?  Should you invite them to the MedExpress the next time you get an IV because you haven’t been able to eat anything for a week and you need to get nutrients somehow?  Should you invite them over to stare at the wall with you during brain fog?  The list goes on and on.

You will likely never see any of this, unless you are the caretaker of someone with GP.  GPers are EXTREMELY good at hiding just how sick they feel.  This is partly due to the fact we really don’t know what it is like to feel “normal” and partly due to the fact that we don’t feel like explaining all of this again and again and again every time we get sick.  The interesting thing about explaining being sick is that we are often treated as if we aren’t doing everything that we can (more on this in future blogs).  All of this is exhausting.  Since we are limited on energy to begin with, we decide to conserve our energy and politely say “thank you” when really we are screaming inside that we would like them to experience just 1 week of our lives to see what sick really does look like.

~ Millie