Exhaustion.

The exhaustion I feel after the slightest of exertions is amazing to me, even after dealing with energy loss for months. It honestly scares me that my body is so weak-I feel incredibly out of shape and actually acknowledged it when I had to do a swim test to prove that I could be a competent swim instructor this month.

I don't know exactly how many calories a day I actually manage to keep down, but it is clearly evident that my body is having difficulty surviving. Case in point, I went to the tanning salon today (I rely on my half-Pakistani side to keep me skin cancer free), and felt physically dead after twenty minutes, with fun side effects of dizziness and faintness.

I haven't had this happen before and it terrified me. I didn't realize that I was weak enough to the point where excess sun exposure exhausted me. After I half-staggered out of the nail salon, going to the grocery store with the boyfriend felt like the last leg of a triathlon. I'm sitting here now, several hours later, barely able to stay awake while watching Grey's Anatomy.

Although, in all fairness, Grey's has really gone down the shithole in terms of jumping the shark repeatedly. It is, however, enough of a distraction to keep me conscious and not feeling as nauseated.

Another aspect of today that surprised me was how easily I could tear up over just about anything after my tanning spree. I felt very weepy, depressed, and emotional after, and had a good cry with the boyfriend for about an hour.

I even called my parents, just because. Usually, I call them when I'm in some sort of financial trouble. They don't appreciate those calls particularly, so they do enjoy a good chat when I'm not frantically dialing for cash.

The point is, I tend to forget the most basic of human emotions sometimes. Namely, that when at the brink of an exhaustion overload, people cry. They emote. They freak out in some sort of way. And that is exactly what I did today.

Post cry, I wish I could say that I feel better, but I honestly just feel drained, empty, devoid of feelings. Numb, you could say.

The fact that this ridiculous proportion of exhaustion hit me after one 20 minute session in a tanning bed really is scary. It's proof that my body is falling apart, something that I've been continually trying not to acknowledge. I want to believe that even with puking every day, that I'm ok.

It's getting harder and harder every day to keep that facade up. So, for tonight, I'll let myself be numb, let the wall down, and face my exhaustion head on.

"But you don't look sick..."

I honestly wish I could have a dollar for every time someone has said that to me within the last two years...I could probably pay off all of my medical bills by myself if that option was a possibility.

One of the most difficult things about GP is the explanation of what's wrong with you. First of all, people don't tend to think that stomachs can just stop working, and if they have any iota of an idea that stomach paralysis is possible, they don't realize how the hell that would affect a person's entire body, as well as mind.

Just because someone appears to be healthy doesn't mean they are. Personally, I try my best to look somewhat 'normal' whenever I go to the grocery store, 7-11, etc because I always feel as if people can tell that something medically isn't quite right with me, but don't want to ask. This may be because I have lost a significant amount of weight since starting to follow GP diet guidelines.

Or perhaps because lately, I carry around an aura of depression. Just one of unhealth, of general unwellness. but I digress.

The most common time I actually have to explain that I have GP is at the grocery store, go figure. Not having a job right now is helping in terms of lack of explanation to the general public, but there are some random people at various locales who ask about my hospital bracelet, skinniness, etc.

But, the grocery store is the most common place. This is because what appears to be a 17 year old girl is buying baby food in bulk at the self checkout.

I get one of two reactions at the grocery store--the judgmental "I can't believe I'm seeing a teen mom at my local Vons!" glares from people, and the look of general confusion-"why is this teenager buying baby food?"

First of all, I look very young for my age. I'm 24, and I still get carded for tobacco on a daily basis because apparently I don't look like I should have a driver's license. So I can imagine why it'd be weird to see me at the store, but still. Being on the side of the curious stares is not a pleasant experience and really expedites my grocery shopping

Usually, people don't comment. But more times than I've expected, either a random person in line or one of the checkstand people makes a comment. Some sort of "how's the kid?" begins the conversation, to which I always reply, "No kid, just a chronic illness."

This logically follows into a quick synopsis of what GP is and how it affects me on a daily basis, all before I can swipe my debit card.

I usually launch into some sort of a Wikipedia-esque discussion of what GP is and what it does to you. After I inevitably tell whatever person that I throw up at least once a day is when I receive the requisite "But you don't look sick!"

You have no idea how much I absolutely DESPISE hearing that. Instead of, "you don't look sick," why not, "Wow, congratulations on not disintegrating from starvation! Keep that weight up!"

Obviously that statement is completely idealistic and I'd never expect to hear it from anyone. But it is a daily battle trying to keep my weight to some semblance of normal and it is incredibly irritating to have to hear day after day that I don't look sick, so therefore I shouldn't act like it.

I always fantasize and play the 'what-if' game with these people--"Imagine if you had the flu every single day, but without the knowledge that you will feel better after a few days of hell," or "Try eating 200 calories a day for three days and then imagine how you'd feel about trying to go through a typical day in your life."

People in general don't understand that either. It's very frustrating. They know what it feels like to have the flu. They know what it feels like to be famished-but usually only after skipping one meal. Try skipping everything but your morning coffee everyday and you'll see how I feel like.

The conversation always ends with some sort of generalized "well, I hope you feel better!"

...thanks, random people at grocery store. It's a nice sentiment, but it really doesn't do anything for me, especially since I "look so healthy." Great!

I wish that, with even one person, that GP would sink in with them. People try to understand cancer, AIDS, other chronic illnesses, but GP is a relatively unknown one and some actual awareness beyond a five minute conversation would do wonders for GP research.

The point is, if you see someone buying baby food, don't judge, especially if they appear young. And if someone tells you they are sick, don't brush it off. Respect them, tell them you're sorry, and to keep your head up.

That's all people with GP need-a positive wish that our lives will improve. Think about it next time you're at the grocery store--4% of the population has idiopathic GP, and even more have diabetic related GP--there's a possibility someone there at your store is suffering.

Just tell us to keep being positive, because on good days, those words will hold. And on the bad days? They'll keep us going.

Waiting.

I've noticed that as of late, particularly with my lack of social life, that the majority of what I do on a daily basis is wait.

I wait for a dazzling array of possibilities to occur. I wait for small tasks to finish, to create progress in whatever I am doing. (in terms of messing around on my mac). I wait for mail to tell me good news. I wait for the BF to come home so I don't feel so lonely.

But mostly I wait for October 8th, which is hopefully when I will begin my new regime of pro-kinetic meds for my stomach. Due to my atrocious reaction with reglan the first time I took it, a few weeks ago (it made me severely depressed, then pass out. However, I did notice that when i puked, the food was slightly more digested. Plus?

It's a sad thing, this waiting game I play, and it isn't by any means fun. Waiting on answers that I have no control over and that detrimentally could affect my life is one of the most frustrating impasses I have ever reached.

The control freak aspect of it is the worst, of course. I've had undiagnosed anxiety and issues with control since my tween days, and the build-up of my anxiety over the years does not help in terms of being patient.

I have always been the type of person who is the first to go out and make sure something is done. I pride myself on that. However, I am now at a point in my life where most of my control over myself, my body, has been taken away from me, and I am left to wait.

So, unfortunately, today is just like any other day, and i will wait for the decisions made by others that will change my life for the better.

I will wait.

But, I never said I would be patient. And my impatience is the only control I have left, so I will maintain it.

On a sidenote-I found this website, Pura Vida Bracelets. They have a Gastroparesis Awareness Bracelet, which you can see below:



It's adorable, I already bought one. And the best part is, the company donates $1 to GP awareness fund. As GP is one of the most under-researched conditions in the history of the world (in my personal opinion), this is an amazing way to spread awareness of this illness.

and so, I will wait for my bracelet too. But with a smile.

Support Systems.

Support systems are a funny thing. Whenever I think about a support system, I tend to visualize a person or a group whose purpose is to provide "support" to another person, one with some kind of physical or mental or financial deficit who can rely on said support system to hold them up through whatever crises that person is experiencing.

It's interesting though, because the definition of "support" is vague and cloudy, and definitely changes on a person-to-person basis. For example, one person with GP may want someone there to hold their hair back when they puke, but another may simply want someone to say 'it's ok,' hand them a rag, and rub their back.

The point is, it's difficult to find a support system in terms of being someone who needs one, because in order to have one you have to define what kind of support you actually want.

Which I consider personally to be the most difficult aspect of what I want from a support system, because my needs tend to vary on a day by day basis depending on how much food I kept down last night, how much sleep I got, etc. I feel bad for the BF and the parents sometimes....I can be fairly high maintenance when it comes to what I want from the people who are close to me.

When it comes to my friends, its a difficult process to support me because of geographical distance. It's hard to be there for someone when you're 300 miles away and can't really do much more than a 'sorry' and 'hope you feel better tomorrow.' However, it is appreciated so, so much on my end because it means that despite the chaos and difficulties in their lives, they're thinking about me and wishing me well. When someone isn't physically present, that's the best you can ask for, just someone to listen to you whine and sympathize.

When it's someone who isn't geographically distant, this is where the definition of a support system becomes more variable. I understand how hard it must be to be around someone who pukes constantly and can't really do much, (I mean shit, today is a particularly bad day, I couldn't even go to my hair appointment because I feel so close to vomiting. However, I've definitely noticed a correlation between my mental status and my stomach. Bad head days always lead to bad stomach days. I'm scared to eat tonight) and how frustrating it must be to be stuck around someone who is struggling just to survive.

But this is where the support system is really necessary. Having GP is ridiculously hard and ridiculously debilitating in terms of survival. Throwing up day after day, facing each morning with fear of how the day will play out instead of rejoicing that you're alive for another day...just living and wanting to wake up for the next day is hard when you have GP.

Especially when you have GP and are still waiting to start a treatment that may or may not work. It's incredibly difficult facing these odds every day and still have a desire to fight, to live.

This is where that support system comes in. Because you need someone there to get you going, to tell you that things will get better and you won't always feel this shitty. Because without a support system all you will do is wallow in pity. And perhaps that is part of what a support system is as well.

The point is, it's difficult to have a support system. It's hard to describe what would make you feel better when all of the negative odds in the world are pressing down against you. It's hard to say "oh, a hug will help," but the next day it may not. The feelings you have with GP change on a daily basis, and it's the responsibility of a good support system to understand that and be flexible with how they support you.

Always have someone there for you, because on most days with GP, you can't be there for yourself.

Loss.

One of the hardest obstacles in the battle against GP is the continuation of a social life. In a way, it almost screams 'haha, I may throw up all day but suck it, GP, look at me having normal social interactions!'

However, due to the truly amazing coalescence of gastro-related symptoms, social interactions are pretty much out. period.

I think I've finally reached a point in my life where I am mourning this loss. Never again will I be able to spontaneously get drunk with friends. Never again will I be able to go out to a restaurant and order something off the menu without worrying about the far ranging consequences of soup versus the crackers and tic-tacs in my purse. Never again will I be able to enter a bar and actually enjoy the atmosphere drinking entails.

I know this is a ridiculously pessimistic way of looking at things, but it's the honest truth, at least in college. If I look back at the past few years of my life, I really can't remember a good portion of them, and that's because I had the freedom of putting whatever the hell I wanted in my body without fear of hours of throwing up and nausea which remains steady for hours after.

Since the GP really started affecting my life, hitting its worst and continuing downhill from there in around November of 2011, I have felt this loss. Repeatedly. The worst part of this loss takes place in several stages:

Stage One: Receiving requests from friends to hang out/drink/go out tonight and subsequent refusal without a real explanation of why.
Stage Two: Repeatedly denying requests from friends to hang out/drink/whatever, with small explanation of stomach problems.
Stage Three: People stop asking you to do things because they know you'll say no, and become frustrated with you due to your complete de-evolution from social butterfly to couch caterpillar.

Although my friends do understand to some extent about my social limitations, it's hard for them. I do give a few of my friends some serious credit though-they make time for me, even if they aren't in Santa Barbara, to just come and hang out, talk, maybe smoke a little--changing the scenario of hanging out into one that's suitable for me. Namely, no food involved.

I am ridiculously lucky to have these people in my life, those that are willing to just sit around, listen to me complain, and make me laugh instead of wallowing in pity with me. These are the only components that my 'loss' has allowed me to keep and i will treasure them.

However, I will say that the absolute worst part of living around people who still maintain the freedoms I've lost is the jealousy. Do I want to go drink every night and rage my face off at the age of 24? No. But would I like to have a few beers and watch the football game? Hell yes. That has been my favorite activity since I came to college. Stanford + ShockTop + Game Win. That was an explicit equation to my personal happiness.

The jealousy kills though, especially in terms of the BF, who still drinks like he just turned 21. It honestly feels like at some points that he's throwing it in my face that he still has the ability to go out and party and essentially has freedom, while I remain chained to my bed in my apartment, trying to hold down my yogurt bites.

I think that at some point, I will get over this 'loss,' this lack of being able to live the life of a normal person and not of a formerly entertaining ghost of a person.

But, I think right now, in wake of my recent diagnosis of GP, I am allowed to wallow. and wallow I shall.

The Building of Frustration: A Case Study

It simply amazes me how the meds I'm on affect my mood. With all the mood swinging I still have to endure until the drugs in my body decide to harmonize, I feel like I'm simultaneously PMS-ing and going through menopause. This isn't fair. Although I feel as if the hot flashes are due more to a lack of ventilation in my apartment than the neurons in my body running awry.

Case in point. I woke up fairly early this morning, like I have been for the past week. I haven't been sleeping that great, waking up 2-3x a night and watching P-90X informercials until my body graciously grants me sleep again.

In addition, I have now apparently become the lightest sleeper in the country. I don't know how this shift occurred, because I used to possess the innate ability to be literally dead to the world until my body thought it was ready for the next day. Usually, this was around 12 or so hours of mostly uninterrupted bliss. (My mother seemed to be the only element against this plan).

So, needless to say, I am not a morning person as of late. I tend to get really frustrated, especially if the boyfriend is still sleeping and I feel bad for doing things like flushing the toilet (NOW WORKING BY THE WAY, THANKS BF + UNCONVENTIONAL CLEARING METHODS) and making coffee, because I have assured myself that I will always wake him up doing so, even though he DOES possess my former sleeping abilities.

However, it seems like the abilify I'm on does help in the morning. Abilify, a cigarette and coffee together tend to make my mornings pretty happy-go-lucky as of late. Granted I am supposed to be re-teaching myself calculus right now but as calculus tends to make me cry and/or throw things, I don't think it's in my best interest to be attacking a task that fucks with my neurons anymore than the present.

Not this morning. This morning, I woke up queasy, 7-11 ran out of pumpkin spice creamer, and I've been messing around with this pinterest gadget on my page for a good 4 or so hours. And am still queasy despite all of the anti-nausea meds I'm on. For some reason, today, my body just decided that it didn't want today to happen. And its punishing me for living through it.

I can tell you right now, the trip to the grocery store seems incredibly difficult. The appeal of doing absolutely nothing besides rewatching Sex and the City reruns all day far exceeds any sort of productivity.

Add that feeling to my general irritation of the day and predictably, I'm going to curl in a ball with my baby blanket and glare at the BF's food as if it is responsible for how i feel.

Here's to (perhaps!) no puking (or just no eating) tonight!

Why, Life?

I don't know where I've accessed this massive compilation of karma, but karma's a bitch and it enjoys personal torture on a daily basis.

Boyfriend comes home, sees toilet [I have resolutely refused to touch the toilet after my almost-brush-with-death-and-lysol earlier this week], and instantly decides that since I am of female persuasion that I have never touched a plunger, much less attempted to fix a toilet before. In all fairness, I have more toilet-problem history than the average person, my little sister used to clog mine up all the time through a variety of methods so I was taught to wield the plunger early in life.

However, boyfriend did not agree with this, and solely based on my status as a female (ok in all fairness, I can't do anything for my car for shit. I don't even know how to fill my tires up, but still) decided that he, as MAN of the house, was capable of defeating the toilet.

Boy was he wrong.

As expected, the toilet decided that it was time for the Great Flood of 2012 to occur (I guess we are three months away from certain death, thanks Mayans), and of course I had to clean it up. Mostly because I am a germ freak when it comes to toilets and all that entails, partially because I consider myself a super cleaner after years of "you can't go see your friends/go to a movie/go to swim practice/read Harry Potter until the bathroom/floors/kitchen etc. are clean."

So, here I am, still feeling as if I am literally covered in e. coli, and frustrated. The frustration? Because I still don't have complete control of my emotions yet, which means I wouldn't consider myself mentally stable yet, which means another step backwards in terms of getting my stomach medication. I am not kidding you, this is beginning to feel like the never ending journey. I feel like every time I take a few steps forward, some physical or mental obstacle comes along to fuck it all up and push me back.

I am not kidding you, I was either Hitler in my past life, or all of my 'I'm a terrorist' comments are catching up to me (I'm sure my house is bugged--it's fun having a birthday on 9/11 and having a pakistani last name. Thanks, Bush & the Patriot Act, I really enjoy using my car to go to Texas instead of flying because apparently there is bomb residue on my graphing calculator. Right.

Anyway, I don't know the source of this karma, or whether I simply have bad luck, but I am tired, hungry, nauseated, and frustrated. I honestly find it kind of impressive to experience all those feelings at once. Hunger + Nausea is possibly the most contradicting, confusing feeling in the world. It isn't fair when half your stomach is telling you to stuff your face, while the other half is all "try it, bitch. just try me."

I guess it's just one of those days.