Vicious Cycle

Taking the T3s to help with pain and the Gravol to help with the nausea from the T3s and the coffee to try to stay awake on the Gravol to make it through the day. 

How Celiac Disease helped me find the one

I know  I’ve talked before about how tough dating can be when you have chronic illness, as well as strict dietary restrictions such as being gluten free. This is true, and it’s exceedingly difficult to explain to people the importance of the diet and the nature of the consequences if it isn’t followed to a T. Having said this, I struggled through the dating scene for a while, meeting various guys that I either just plain didn’t like, as well as guys that seemed decent, until the Celiac conversation came up that is.

The thing about this disease that eventually helped me find the man I know I’m meant to have a future with (who can say how long, I’m not psychic after all) is that it showed me who was really IN this with me. I met a guy on a popular dating app and we went on a date (at a restaurant of my choosing so I knew the food would be safe of course). Now, we talked and hit it off and I believe my  CD came up on this very first night. He seemed confused, like most guys I’d tried to explain it to, but also appeared open to my needs as well as respectful which was a huge thing for me! As the weeks went on, all the restaurants we frequented he made sure to check that they had gf options before we ate there. Then, when it came time for me to meet his family, he had shopped and read up and prepared me a gluten free, celiac safe meal! Those of you with celiac disease and experience cooking gluten free will appreciate how impressive this really was- I certainly did!

As the months went on, I would occasionally become glutened accidentally from restaurants that claimed to be gluten free etc (you know the deal) and this was when I worried.. Of course the symptoms aren’t always pretty and definitely not fun, but what did he do? He spent lazy days and even lazier nights in with me while I was too sick to go out. He did laps to and from the microwave, heating and reheating my hot bag, gave back rubs and dispensed pain meds at various intervals… sound chivalrous yet? Well wait for this, he held my hair back while I threw up in the sink….multiple times. Winning moment for me? Far from it. Winning moment for him? Yes, because he truly did win my heart no matter how cliche that might sound.

I guess the moral of this story is that my illness helped me see early on that he truly does care, that he has a protective and comforting side and that he really will go to lengths to make sure I’m healthy, safe and happy. He may not understand the extent of my pain, but he’s learning, trying to prevent it and there for me when it can’t be prevented. With a life long illness, we look for qualities like this in people we want to be with, because the illness will always be a part of the relationship, whether we like it or not. Having someone who can deal with it while helping me deal with it is huge and something I think can be rare and know for a fact, is hard to find.

He cooks me gluten free meals daily and checks the menus of places we go to eat. He comforts me when I’m sick and relishes in the rare days I’m actually feeling good. He’s stuck by me through this, and I have a pretty good feeling that he’ll stick by me through whatever has yet to come. And this, is how I think that my Celiac Disease has somehow helped me find my one.

Yes, I know that rhymed, but it seemed kind of fitting, right? No? Oh well, I tried.

My purse, my mobile pharmacy, my love.

Common knowledge says that you can usually tell a lot about a woman by the contents of her purse, however if someone were to successfully empty all pockets, baggies and hidden compartments of my purse, they would think I was a pharmacist running some sketchy side business. As a woman with various medical conditions- Celiac Disease, Asthma and Hypermobility syndrome (to name a few), when I am actually able to leave the house, I do so with literally everything I might need.

Unluckily for me, the other day while unloading all my stuff from my car, coffee, keys, bags and sunglasses in hand, I dropped my purse, spilling its contents out all on the driveway. I’m sure the neighbors didn’t appreciate the language that came with this hassle as I dove to collect the pill bottles that were now rolling towards the street. This moment was when it really hit me- how much I rely on meds to get me through my daily life, and how terrible the contents of my purse must look to passersby who know nothing of my conditions and daily pain levels. We’ve all seen those television shows where the housewife pops 2 Adavan while sighing as the kids rush in after school… thoughts? “What a pill popper!” well folks, some of us have to be and trust me, it isn’t fun. Between the asthma inhalers, NSAIDS, antihistamines and various other prescriptions, my purse holds my life and health inside. Oh, and I forgot to mention my trusty TENS machine that I use when the other pills don’t seem to help with the pain.

My life, whether it’s work or play, requires constant monitoring and preparation to make sure that I always have what I need on hand. It’s hard enough holding down a job and social life with chronic illness, could you imagine forgetting the purse that holds all of your medications at home? I don’t have to imagine because I’ve done it, and trust me my friend, it’s terrible. So yes, my purse resembles a mini pharmacy and yes, there’s definitely more pills than cash or makeup in there, but that’s the life of a spoonie. My purse, my pharmacy and the way I keep my life on track.

Practice what you preach, or at least make it look like you’re trying

I think sometimes people are just too hard on themselves. Why is the world so stressed these days? Because we schedule too closely, eat too quickly, text too often, and as a result, stress ourselves to oblivion. Does this make any logical sense whatsoever? No. Do we continue this sickening pattern every single day regardless? Yes.

It really makes you think. For me, I think about it a lot and it ironically makes me more stressed but that is probably because I don’t do it properly. I try to ignore my phone, but am always waiting for a call. I try to slow down, but then guilt myself about doing “nothing”. In the end what does this really get me? I think in the end I will have developed an ulcer and become a total wreck that struggles to even leave bed because I’m so crippled by stress. If you think about it this way, you’re making yourself stressed about doing nothing or more accurately “taking it easy” (well-deserved of course) to then an inevitable future demise where you will then be unable to do anything but “take it easy”. Then where will that leave you? The answer is even more stressed because you won’t have any choice but to feel guilty about not taking it easier sooner and now being forced to take it easy when you should be busy liking your work (or trying anyway), loving family life (hopefully you don’t have to try hard for this one) and being so hypnotically caught up in this wonderful thing called life that you have no time left at all for stress.

I know it’s all easier said than done. Obviously…As I’m currently sitting here beside a pile of readings that haven’t been done, feeling guilty that instead of tending to them I’m here on my computer writing, but writing is my passion, it’s what I love to do and I have to learn to feel less guilty for allowing myself that time. Do I feel guilty that I have all this work piling up as we speak? Yes. Do I know I’ll have trouble getting to sleep tonight because of worrying about having enough time tomorrow? Duh. But do I believe that that will be my reality forever? Not at all. Or at least, I really hope not. Thing is, we’re all pretty deep into the technology now and it feels like there’s no going back at this point. Since you’re reading this blog I’m going to assume that we’re all fairly tech-savvy or maybe a better term would be tech-somewhat-capable people and most of us turn to our devices for just about everything. You do realize that there’s this thing called the library that has real books about Celiac Disease and all that jazz, right? Just kidding, those books are dirty and other people have touched them and us blog-appreciating people don’t need none of those germs now do we? Too cool for school over here! But seriously, we all just need to put thought into what we’re doing and how we do it. I won’t use the term “mindful” because I know that is frowned upon in the world-wide community (more or less of course) but we really do need to be thoughtful (is that a better word?) of how we plan our days and what they really consist of. Let me ask you this: When you’re lying on your death bed however many years from now, will you wish you had spent more time at the office or at lunch with that friend that you pretty much hate but go out with because she’s “really not that bad” or you’re “not really in a position to be losing any friends at the moment” you “really don’t need the drama”? Chances are you’re going to regret not spending enough time with the people who truly enrich your life and who made you feel at peace under all the stress. You may even miss your alone time. True extroverts probably won’t understand that one but for people who enjoy the solitary way of life, I got you.

Moral of the story is that there is so much hope, even under all the stress, we just need to allow ourselves the time to find it. We need time to accept that we can’t do everything at once (we shouldn’t have to by the way!) and that life is about so much more than scheduling. Our health is depending on it and our bodies need us to listen and understand that.

How is this related to Celiac Disease, you ask? Truth is, it relates quite strongly actually. Yes, I may have gotten carried away with analogies but hey, you’re still reading to this point right? Caught ya. Celiac Disease is an autoimmune disorder and although everyone can experience their symptoms differently, many people (myself included) find fatigue to be a huge problem. On top of my busy days and the stress, I feel even more stressed because I’m so fatigued and take even more time completing tasks than most people. Thing is, I know that I don’t HAVE to feel this way but I am ALLOWING myself to feel this way. People who suffer from fatigue, pain, whatever lovely symptoms you may have from celiac disease (or any illness for that matter) need to put less pressure on themselves. We all need to remember that yes it may sound cliché but, we ARE only human. Sorry to tell you folks, but it’s true. We aren’t some crazy robots designed to work 3000 hours a day. If you’re anything like me you have trouble accepting that and yes, you have to be tough to have an illness like Celiac Disease, but let’s settle for tough shall we? No need for “robotic” to become a desirable personality trait now.

I know they say practice what you preach and yes, I try. No, I’m not perfect or even remotely good at it yet but I figure that at least understanding the theory of it is a good start right? Who knows, I mean, you wouldn’t want your doctors or engineers to have that kind of philosophy but I admit to being a work in progress. A hard working person with celiac disease that forces me to work just that much harder. So from now on I will attempt to master not only the theory, but the method as well. Maybe someday I will be one of those zen people for whom nothing phases them and they just walk around like cool cucumbers all chill and shit. Wishful thinking, that will never be me, but I can only try my best. I hope some of you will try it with me. Remember, Celiac disease can be hard on our bodies and minds, we don’t need stress added to the equation only making it that much harder.

There’s more than just calories on the label, you know.

Maybe it takes something big. Maybe it takes something so big and life altering to make you open your eyes to what the word “health” really means. For me, I think that is exactly what it took. Part of having a disease like Celiac Disease is having to be on a constant look out and to become a constant nag about what you consume and how it is prepared. I never really thought much about what I ate, nor did I really care, prior to being diagnosed of course. I mean, who else LOVES checking each label thoroughly in the grocery store, taking twice as long to go though the isles, pissing off just about everyone else trying to pick up their items in the same section? ME! Not to mention getting to the checkout and feeling nauseated at the sight of the receipt and swearing “I really want a coffee but I need to cut back. I WILL cut back on my Tim Hortons, starting today” to only find yourself in the drive thru a mere 45 minutes later (once the shock has worn off of course). I mean, forgetting the cost for a while (or at least try really hard, like me after a trip to the grocery store), it really does make you think. I stand in the isle reading through each ingredient carefully, thrown off every once in a while by a suspicious ingredient or two (What the hell is “caramel colour” anyways and why is it in literally everything?!) and then the last line…. “May Contain: peanuts, tree nuts, mustard, Wheat”…. WHAT? Did I seriously read through all the ingredients and start to get excited for the last line to say WHEAT? Really? Disappointment? sure it’s disappointing but then once, this guy behind me said “Miss, a half cup has 150 calories in it, isn’t that all you really need to know?”. Need I say more? So now the dilemma begins; do I correct him and start to lecture about my disease and why it is so important to read the label? Or, do I get offended by the fact that he assumes I count/have to count my calories? There’s also the slightly more cinematic option of slapping him in the face (obviously like a strong and independent woman would do….I mean duh) but I mean, I attempt to be slightly more classy than that as I flash a sarcastic smile and pass him the box of gluten-packed Granola Bars he’s reaching for.

Any seasoned Celiac will tell you, eventually you get a hang of the grocery shopping and you learn what to buy, what not to buy, and I’ve been learning this, but it seems as though every time I grocery shop, it’s some kind of adventure. I don’t mean the kind of adventure where while strolling through the Gluten-free isle, I bump into a stranger only to look up and realize it’s a handsome (do people even use that word anymore?) man who chuckles and says “have you tried these organic, gluten-free, sugar-free, lactose-free cookies? They’re to die for” and then whisks me away to his condo where he cooks delicious gluten-free pasta and we kiss without worrying and fall madly in gluten-free love (I have clearly put too much thought into that one). But no, not that kind of adventure, I’m talking about the sweatpants, 2 days unwashed hair trip to the store where you go in for a few gluten free items, run into that girl you never really liked and end up in a conversation about what celiac disease is and if you think that’s why you “gained all that weight last year”. Yes. Not as much thought went into that adventure as unfortunately, it was not only a figment of my imagination, I don’t happen to be that lucky.

I have to admit, the gluten-free food isn’t nearly as bad as it was in the beginning. I’ve adapted pretty well to the point that believe it or not, I actually like the taste of GF bread more than I liked the taste of the regular stuff. Shocking, I know. I just find the ignorance of some people to be too much to take some days. It could be because I typically grocery shop on an empty stomach (bad idea, I know) so I’m just a hungry, oily haired, sweat pant wearing mess with no money in the bank when I finally get the chance to pick up groceries. Hey, at least I no longer pick up a lot of the junk food I use to eat, but that doesn’t mean I miss it from time to time.

I guess the moral of my rant is that putting this much thought into what you are going to be eating really changes the way you think about food over time. I started to think of food as actual fuel for my body rather than blindly picking up a bunch of junk off the shelves because it looked like it might taste good. Sure, I still do that sometimes while in the GF dedicated isle, but it’s almost as if it doesn’t have the same effect on me anymore. When you realize that Celiac Disease is actually keeping your body from absorbing a lot of the nutrients that you need, it’s kind of like “OH YEAH, my body actually needs those things called vitamins and minerals, who knew?!”. So, now I spend even more time reading labels because I also want to check all this mystery stuff like protein and fiber… I DON’T EVEN RECOGNIZE MYSELF ANYMORE! But I guess that’s a good thing, actually caring about what you eat and what it does to your body; it can only mean good things, right? Maybe for you, but for others, not so much. The struggle is real when all your friends want to go out to McDonalds and all you can think about is the 500 calorie fries (containing hardly any protein or fiber by the way) and the fact that that’s pretty much all you can eat there (unless you have a sudden hankering for relish, that’s A-Okay gluten-wise). Maybe even though celiac disease is just as it sounds (a disease) it will actually lead me to a healthier life. I have already lost about 45lbs (much of this I gained in the last couple months before my diagnosis due to debilitating pain and hardly leaving my bed for weeks) but it’s definitely a start. You can’t stay I don’t try to look at the bright side now can you? I’ve always been more of a glass-half-irrelevant kind of girl, but I guess it’s never too late to start…. or maybe it is, who knows, I’m not saying I’m an expert or anything. Funny how weirdly optimistic I sound right now, as I prepare to leave for my grocery shopping for the week. See? I knew something was up, I will soon be back to my normal self when I unwind with a glass of wine after my voyage to the gluten-free isle.