A little insight goes a long way

Recently I came across an article that gave quite a bit of insight into some of the behaviors that I have noticed in myself and my husband that I had never really understood before. It is a common trait in ADHD and the various manifestations of it are all too familiar. Though I am not one to rely on labels to hold myself back, it is important to be able to be informed about various aspects of yourself in order to better yourself.

It was in reflecting on this article that I came to realize a very different insight than you might expect. One related to how I have been dealing with my emotions related to the auto-immune flare ups and fibromyalgia flare ups I have been experiencing lately. I have been struggling emotionally with not being able to push through the pain and sickness, because when I was younger I was able to. Something that struck me as I was reflecting on my own behavioral patterns is that I had never actually thought of the true difference in the situation between then and now. I let my emotions build up wildly because I have already gone through a good variety of situations where I faced Rejection Sensitive Dysphoria because I am not able to just push through the pain. I’ve let myself stew and ultimately bottle up the emotional reactions to those situations, which I have unjustly internalized against myself.

What I had not let myself look at was the rational difference between when I was younger and now. I had not explored why I could push through before and why I cannot now. It was the chemical reactions that my body produced when consuming gluten and casein that I had forgotten to grant any weight. Although I was suffering, inflamed and in tremendous amounts of pain when I was younger, my brain was flooding with opiod-like substances. Even after going gluten free 5 years ago, I had continued to consume dairy–which I later discovered an allergy to. I can vividly remember the sensation of the ever delicious DQ blizzard on days of stress or pain. I relied on this almost weekly during university. Although not healthy, it had become a coping mechanism that helped me to push through the migraines and pain I was experiencing.

Now I am in a situation where I am eating healthy, avoiding foods that cause upset and trying my best to move forward through the suffering. Comparatively, I have gone from having an opiate-like high all the time, to not. Realistically, whether I was in more pain back then does not effect the fact that I at least had some form of relief, albeit a horribly unhealthy form of relief. I am no longer able to ask for most kinds of relief, because I cannot tolerate most medications without experiencing severe side effects. I am fighting the real battle now, without any shield. I know that there will be people who judge me and criticize me for where I am and what I am capable of doing, but at least I can give myself the peace of mind to know that I am doing what I can. Although I know I will still have stronger emotional reactions than I would like to admit, I can start to work through them without beating myself up for being sick.

Isolating Shouts of Support

With the advent of the increase in advocacy for mental health there has been the birth of an interesting but isolating phenomenon. As individuals begin to hear echoes of support for mental health chime throughout the internet, the reality of support and support systems has taken on a hollow tone. In my own experience with fighting depression, I have found it has become much more common for an individual to support the idea of making depression less taboo rather than actually supporting individuals that suffer from this debilitating mental illness, or any illness in truth. What’s worse, most do not seem to realize that there is truly a distinction between them.

It is becoming increasingly common for people to rally behind the flag of representing the experiences of a group of people in order to reduce the taboo, raise awareness and to support inclusiveness. Yet in doing so, the opposite is almost always the case in practice. This act of rallying distances these individuals from the reality of the people they are trying to support because it creates a concept to rally behind rather than actively taking steps to help. Which in most cases leaves little that is done to actually assist these groups of people as a whole, no matter how many individuals say “I support you.”

Though it has never been easy to find a support system when suffering with mental or physical illness it is becoming harder to find the more people group behind social media to support individuals from a safe distance. Although many will say that they support you, they are saying they support the idea of you getting the necessary help you need. They are not saying that they want to provide that help. They are not saying that they want to be of service. They are not saying that they want to confront the reality of your hardships head on and face them with you. This leaves you confused and helpless as you search through the voices of those saying “I support you” to find one that means “I will help you and stand by you through this myself”.

In many ways, I find this flood of internet support and awareness has become more isolating than anything. At least before the cries of support rang about social media, you knew who really meant it and who didn’t as soon as you said “I’m not well”. There wasn’t a wall you could hide behind to pretend that you would be there.

A diagnosis with no direction

It is a hard thing to write:

I am depressed.

I am feeling depressed.

I am going through depression.

No matter how I type it the words seem to float as a far away dream, surreal that the state of being that I have been going through has such a simple name. I’ve always dissociated depression as being something other people go through while trying to rationalize my emotions as being caused by my health. While it is true that my health caused my depression, it is also true that my mental health is just as important and in many ways more important than my physical health. I have been neglecting my emotional health for a very long time because I had always assumed that being sad or wishing I would disappear, die or never have existed in the first place was a logical side effect of the chronic pain and inflammation in my body. Even though I know that mental health in and of itself can heal or worsen disease, I didn’t want to admit that I wasn’t strong enough to just push through it and magically be ok. I didn’t want to feel weak.

Admitting how sad I feel would make how useless I feel real. Other people would know what I think about myself and maybe they would start thinking that about me too.

That I am useless.

A burden. 

A bump on the log ruining everyone’s time.

A waste of space. 

Admitting it would mean saying that things are as bad as they are in my head. Admitting it means admitting that I am not ok. Admitting that chronic disease is frigging hard. Admitting that just because I know there is inflammation every where, or that my hormones are wonky, doesn’t make feeling like this is ok.

I started seeing a psychiatrist for cognitive behavioral therapy recently, and I have been given a diagnosis that I never actually wanted to think I would ever have. It is honestly the only diagnosis that hasn’t given me a sense of relief and direction. With my physical health, I am going through it, I know it is not normal. I know I can make it better over time once I know exactly what is causing it… but chronic depression?

My health caused it, but I can’t fix it by making my health better. I have to fix it to make my health better. I have had no interest in the things I love for the last 8 months. I was able to fake it for a while, but now I can’t even bring myself to do that. I have had times were things were bad and everything was dull in the past, but this has been worse. I know that my joints and gut have been inflamed. I’ve had the blood tests. I know that inflammation in one part of your body means inflammation everywhere, including the brain. I knew that before the psychiatrist told me that inflammation in and of itself would cause depression. Knowing that doesn’t help, it doesn’t make it better, it doesn’t even give me a direction as to how to make it better.

I am thankful that my husband and one of my close friends helped me to realize that I cannot keep leaving my mental health on the back burner while I try to fix my body. I’ve become so tired of everything that I am losing the will to keep trying. It feels utterly pointless. Maybe as I start CBT I will be able to have an idea of how to pass over seemingly insurmountable mountain of my mental health.

This post has been hard to write, unbelievably so. I honestly don’t feel stigmatized by anything that is going on in my body more than my mental health. Some say the hardest part is getting out of denial… I guess I will have to see from here…

An epidemic of priority

In childhood, everyone assumes that they are like everyone else. Their body must experience and feel things that everyone else goes through. For many, that translates into growing up, aging and experiencing a fairly normal range of health. For others, it leads to problems being undetected until it is too late. Somehow our society has put such an emphasis on the idea that your health is not a priority until it is so debilitating that you have to address it. The idea that you have to address problems when they are so bad that they can’t be fixed is something that no one applies to any other area of life. Yet, somehow we almost all do that for our own bodies.

“You just learn to live with it.”

“It is just part of aging.”

“I’ve been going through this for years.”

“Well there isn’t anything I can do about it.”

These are all statements that have me questioning the speaker when it comes to their health. Would you say that about a car? About your house?

If you had an ant problem or a leak in your house, would you really sit there and do nothing? If your car wasn’t turning properly, would you really leave it like that?

Most people would say no, and many more would say they even do things to prevent those problems and keep their house or car in the best condition. So why would you leave your body like that? Why would you accept that you have things going on in your body that are not normal? Why not try to seriously do something about it? Maybe it can’t be fixed but most things you can definitely prevent from getting worse.

It shouldn’t get to the point where finding out the label for what ever is wrong with you becomes the biggest source of relief in your life. It shouldn’t get to the point where you are so elated to finally know what is wrong and how to more forward with it because nothing was done to prevent it. Health needs to be the first priority because careful maintenance is so much easier than a total overhaul. If you have family with genetic disorders but do not have any symptoms, get tested. Not every genetic disease starts with symptoms. If you have a family history of anything, get tested. Not because you may think you have it, but to cover your bases and prevent the possibility of doing something that will make it worse if you do have it.

There is so much research that has found ways to prevent illness, and others that have found ways to support the body’s own healing processes. The biggest finding: nutrition. It is the one thing that we take for granted most. What you eat makes the biggest difference in your health, but most of all is the key to preventing illness in the first place. Certain kinds of arthritis can be prevented, or at least kept from being too bad with exercise nutrition and muscle support. Autoimmune disease can be reversed if you remove all the triggers and support the body’s self healing. There are ways to make it better… but we shouldn’t be focused on fixing what has already broken, we should focus on keeping it from breaking in the first place.

 

A fare terror

Could food really cause terror?

To most that question would be answered in a split second, with a strong and certain, “Of course not!”

To those with life threatening allergies or autoimmune diseases like celiac disease, you might hear a different answer. Personally, I like to keep the word terror reserved for that utmost uncontrollable panic inducing fear that leaves your heart racing, your limbs frozen and cold, your body trying so hard to flee but unable to. It is a very extreme form of panic that leaves you shaken to the core, and that is exactly what I went through today,  accompanied by flashbacks and uncontrollable tears… All because of food.

Somewhere else in the house, our housemates were off baking a pizza. The house began to fill with an aroma that would have most salivating, but left me with the sour nausea that always comes from the smell of wheat. It has been like that since long before I was diagnosed with celiac disease. Back in the time when I ate normal north american food like everyone else… but  I couldn’t taste the bacon, lettuce or tomato in my blt sandwich because the bread overpowered the other flavors so much. A time when I would bring pasta to university as my lunch, because leftovers have always been my lunch of choice, and I would find myself so nauseated that I could barely finish the meal. As I was teaching online tonight, the nausea crept up in that normal way it does as the smell of baking wheat wafts through the air. I was not prepared for what would happen next.

My husband was on cooking duty, so he made some gluten free pasta which has never been an issue in the past. In fact, it was always a meal we have both enjoyed thoroughly. The olfactory overload was too much though, and all I could smell was the wheat that our housemates had baked into a pizza. My head started to spin at the look of the pasta, and images flashed reminding me of my days in university, reminding me of how horrible I had felt eating those noodles that smelled of wheat. The pizza tricked my brain into thinking I was about to ingest poison, and I felt uncontrollable terror.

I ate my food urging my mind to calm, “It is quinoa and rice in pasta shape.” I repeated that over and over, but I couldn’t calm down. My mind wasn’t in charge, my body’s survival instinct was. The memories of images and sensations were so vivid that I could not stop crying. I felt true terror as my body was trying to tell me to not poison it. Unfortunately, that mix of smell and visual cues was too much for my conscious mind to over come in battling my subconscious need to keep me from danger.

In all honesty, I thought I had healed more emotionally than this in the 5 years that I have been gluten free. I didn’t expect to be gripped so uncontrollably with terror like that… all because of the smell and look of food…

The devil is in the details

I have been letting myself slip into a worse state of mental health as my husband and I have been trying to move forward. The ever churning thoughts of worry and anxiety well up inside my mind and I am stuck frozen in an insurmountable moment of time.

“Nothing will move forward. You will be stuck this way for ever.” My internal monologue whispers, as if my conscience had puffed into being. As though the proverbial angel and devil sitting atop my shoulder had spoken to me, thoughts whispered into my ear. “You will amount to nothing. You will suffer. You will not find respite.” These thoughts echo through my mind and begin to swirl down into a spiral of angered noise. The angel at my ear has been tied up with a gag in their mouth to keep them from talking. The devil on my shoulder keeps chirping away.

In many ways this figurative description of my anxiety and current state of mind is a reasonable representation of the spiritual aspect of my struggles. The devil is in the details of our every day life. If you follow him, he will reward you with all the things that will never fulfill you, but if you refuse he attacks like a wild boar. Yes, we are autonomous creatures with free will, but we are not impervious to spiritual guidance or mis-guidance. St. Ignatius Loyola wrote extensively about this, and many other saints battled demons in a more than figurative way. Padre Pio was attacked physically. Yes, these individuals did receive attention in a way that most people will not, but no one is left alone. The enemy is relentless and will take any opportunity to snag a sheep out from pasture.

Lately I have been spiraling, very very badly. I am not in a position to implement the strict balancing act that I had found helped reduce my fibro, and I won’t be until my husband and I are able to live without roommates. This will be some months away, but no more than 4 months. We have had some ups and downs with jobs, but it has ultimately led my wonderful partner to a strong sense of vocation in his life. He will be starting college in the fall for police foundations with the intention of joining the RCMP, it only took 9 years working in the security industry for him to find the path that we are walking now. It is a series of events that caused an incredibly short period of discomfort in the grand scheme of things. Yet, somehow, the fact that my health is not where I would like it to be at all has meant that this beautiful progress shines like dimly lit kindling. I cannot get passed this sense of overwhelming impossibility. Everything is lining up, but there is a constant sense that everything will fall apart and I will be in ruins left to suffer horribly.

I realize that my feelings of depression are not at all rational. I realize that I am not moving backwards like it feels. Even still, I am unable to pass that wall that screams of failure. Though it may feel as though the little angel on my shoulder has been locked away by the devil, I do find a sort of fearful solace in knowing that my God is always waiting with an arm stretched out for me when I am ready to ask for help and guidance.

Trying to keep my head clear

There is meme that has been floating around social media that I believe expresses the feelings of depression incredibly well through the analogy of mashed potatoes. In essence, I am paraphrasing:

Imagine all of the food you love. The flavors, the texture, the experience of it all. Slowly all of those flavors begin to fade, and the texture begins to feel like mush. Every bite you take looks, feels and tastes like mashed potatoes. That favorite meal is suddenly a tasteless white mush sitting in front of you. People ask you why you aren’t eating it anymore, but they just don’t understand that it is mashed potatoes to you. They offer up some advice and recommend some spices, but those are tasteless too. It is all just mashed potatoes. Eventually, you don’t even remember what anything tastes like except those ever disappointing potatoes. So why bother eating those other things if they are only going to be potatoes anyway?

Lately I have been dealing with my own potato filled existence for a number of reasons, that really all boil down to my health at the core. I have been losing weight rapidly (I lost 3kg in two weeks, and have steadily been losing weight without trying). My abdomen has been in significantly worse pain for months, especially after eating. My doctor poked and prodded, finding that my large intestine is inflamed. I have a colonoscopy on Friday, and as much as I am glad that I will have answers soon, I am terrified to have more issues going on in my body. In the years since I was diagnosed with Celiac disease, I have not seen much improvement in my overall GI health, which is indicative of something else going on unfortunately. This means that although it is not that I am “getting something else” per se, there is something going on that does not as of yet have a lovely label of it’s own.

This constant pain after eating, among other unpleasant effects, has left me facing the unknown. Unfortunately the unknown is scary. It is especially scary when you have a family history of colon cancer and polyps rather than IBD. Thankfully, I am one of those people who have gone and had genetic testing done, so those results do allow for other possibilities. I do have genes associated with both major types of IBD, so I can at least weigh my genetic makeup against the family tree… It is scary to not know… and it turns everything into a looming and overwhelming heap of unending mashed potatoes…

A temperamental relationship with food…

Food is universal. Food is powerful. Food is necessary.

Food can be beautiful, or it can look obscene.

Food can be bitter, sweet, acidic, salty or tangy. It can come in different shapes and sizes. From plants and animals to fungi, we and all those around us feast on nature’s plentiful bounty. Food is a joy for many and a curse for others including myself. It was not always a source of pain and anguish, but it has become so as I have allowed dietary restrictions to rule my life. I focus on what I cannot eat, on the pain that is inflicted during a celiac reaction, and all of my memories of sweet and wonderful food become twinged with anger and sadness.

I spent my youth with an unusual propensity towards cooking and most importantly baking. I would adore the time I spent with my mother baking in the kitchen, and I became quite proficient at it as the years went by. I cooked Sunday dinners from the time I was in middle school because I so badly wanted to cook like my mother could. I could role out a flawless pie crust, create fancy and artist breads tied in braids, bake cakes from scratch and decorate them with ornate designs. I was no professional by any means, but I had a natural affinity towards it. Baking was one of my all time favorite things to do on the weekends. Then it started to hurt me. Now, I think of it of those memories and stifle back tears.

I was good at it, which is not something I flaunt about haphazardly. I loved it as much as I love to dance and do music. If I am honest, I probably liked it more than those two hobbies because I did not need to practice in a structured way or attend class in order to bake. I have not been able to bring myself to dive into gluten free baking since my diagnosis almost 5 years ago. I can’t seem to bring myself to do it without wanting to cry and feel stripped of the skills I possess. If I put my mind to it, I could likely make a beautifully textured cake even today. I never thought I would miss doing something as much as I miss baking.

It makes me angry with food that I am so limited in my choices. I read of others with my same limited diets that thrive and enjoy the necessary experimentation, but I have fallen into a tempestuous relationship that I do not know how to change. I don’t know how to regain that joy I felt in my childhood as worked the dough in my hands. There is a texture that cannot be replaced. Unable to eat gluten, dairy, sugar or carbs my options are rather limited to experiment with. It feels as though it is impossible to do. Impossible to enjoy it again.

I have been watching food shows and documentaries, learning of the things that empower and inspire chefs around the globe. I hope that I can find a way to no longer feel angry with food, and be able to feel that joy again. I know that I may not find inspiration from watching the joy of others, but at least it gets me looking in the right direction. I don’t want to focus on why it makes me angry, I want to focus on how I can change that.

Healing comes at a cost

I am happy to say that my doctor’s appointment was incredibly productive yesterday. She has now confirmed that my joints are in fact swollen, and has prescribed pain cream to help while we figure out the cause and address my gut inflammation. To address my gut inflammation I will be starting the GAPs diet, though my doctor has instructed me to stick on the bone broth phase for 2 whole weeks given the state of my health. Along side the dietary change she has me lined up for a slew of blood tests to see where I have imbalances still, and to have a baseline for necessary supplements. 

Though the appointment went quite well, I am having a hard time mentally preparing myself for the GAPs introduction phases. Bone broth for two weeks while everyone else in the house enjoys delicious full meals is one thing, adding an egg yolk and probiotic juices to the broth for the following week? That is nauseating to think about. I will certainly be relying on God for this one and offering up my sufferings, I’m not sure how I will manage it otherwise. I know that the healing this diet will begin is going to greatly outweigh the sacrifice, yet there is still a stumbling block that I need to overcome. I don’t much like sauerkraut (even home made), I don’t like goat yoghurt (I’m allergic to cows dairy), and I don’t like the flavor of most fermented food except kimchi. Still, I will have to rely on adding these into my diet everyday. I hate the texture of runny egg yolk if it is not soaked up by gluten free bread, but I will have to put that in the broth. I have to give up cold water and switch to room temperature water to help soothe inflammation. I have to mentally accept that the benefits of these changes are all much more important than the discomfort and mental suffering I will endure in eating them. I have to accept that healing comes at the cost of pleasure food for now, and that I need to go through this to get better. 

Thankfully fats are an important part of the GAPs diets, and later on I can look forward to decadent things zucchini pancakes fried in duck fat. When my options start increasing, I will be able to be creative and fun with my food again. Until then, there is not much that can be done to keep bone broth fun… Especially when it has sauerkraut juice and egg yolks in it…

Are you sure it isn’t psychosomatic?

I will be the first to admit that it makes me unreasonably angry and hurt when anyone believes that my medical conditions are phsycosomatic. I feel a sense of riteous indignation that the blood tests, X-rays, glucose tolerance test, MRI and gastroendoscopy I had to endure to find out what is going on in my body are not proof enough for someone to believe that I am suffering because I don’t “look sick”. The idea that I have celiac disease because I want it or because I’m so stressed that my brain is giving me stomach aches leaves me enraged. That I have fibromyalgia because I am stressed emotionally stings like you would not believe.

Yes, psychosomatic manifestations of anxiety and depression are real and horrible experiences for an individual to go through. I don’t go through those. I have diagnosed, measurable chemical imbalances and deficiencies. I didn’t have a blood test every month for 7 months to show that my progesterone was always low because I am stressed. I had the blood tests because I’ve had an irregular period since I was 15 and had a miscarriage last year. I didn’t have a GI shove a scope down my throat while I was under general anesthetics because I was stressed and jumping on the gluten-free band wagon. I had the scope after my blood test for celiac antibodies came back at 87%. Normal range is below 10%. I don’t take a medicine cabinet full of supplements for fun. I take them because I was diagnosed with deficiencies and need them. I wasn’t diagnosed with fibromyalgia because I’m stressed, I was diagnosed because I exhibit all of the symptoms and have been for 10 years. I know that the damage from celiac disease is a huge contributing factor toward the development of FMS, they are comordbid if not causative.

I don’t have a restrictive diet because I want to. I have it because I have to. I cut out sugar because I would rather cut it out than be on medicine to prevent diabetes after I was diagnosed with insulin resistance. Sugar imbalances also trigger migraines. I had an MRI. I did the glucose tolerance test. It sucked. I cut out gluten and oats because I have to or else my immune system will continue to attack my small intestine. I cut out cows dairy because I cannot digest lactose and have hystemine reactions to something (likely casein) where I get migraines and systemic reactions (also known as anaphylaxis). I cut out legumes because I cannot digest them thanks to the damage to my small intestine. Whether I like the flavor or not does not matter. All of these foods are measurably dangerous to my body. 
Stress acts a a catalyst and worsens FMS. It also worsens IBS. It also triggers migraines. Does stress cause my symptoms? No, but it is a very effective catalyst. It releases hormones that really mess up the already screwed up chemical balance in my body.

That is my angry little rebuttle to the idea of it being psychosomatic. I am not angry because I don’t like being judged or questioned. I’m not angry because it is wrong of someone to ask. I’m not angry because I think everyone should be able to just accept that what is wrong with me is invisible. I am angry because the only reason that my invisible illness became so bad was due to not being taken seriously until it was too late. Every person that jumps to that perfectly natural skepticism unknowingly sticks a dagger into the very root of why I got so bad in the first place. Don’t get me wrong, skepticism is necessary when dealing with anything, especially with so many self diagnosing tools floating all over the Internet. The key is to use skepticism reasonably and be aware that your skepticism is very likely going to hit a nerve with people like me. My anger stems purely from the very hard experience of ever worsening health and having to change to a different doctor to have anything taken seriously. It is the feeling injustice that my suffering isn’t enough to remind me that I was caught too late. Without knowing it, every person that asks me if it is psychosomatic reminds me of how unfair and crappy an outcome I get to live with. I am 24, I already do not get to have a normal experience of early adult life, and you’ve reminded me of my completely unnecessary life sentence.

I don’t need you to believe that I am suffering for me to feel the pain I go through. I will go through it regardless of your knowledge, acceptance or belief. Your opinion of my invisible illness has no power to change it for better or for worse. If you don’t take me at face value, how I react will depend on your role in my life. If I barely know you, it won’t matter. If you are a friend or family, it will hurt quite deeply. Not because you shouldn’t be a skeptic, but because it shows just how little you trust me. By asking, you are stating that you do not believe that I have really seen the doctors, or conversely that you know better than my doctors. 

Those who experience chronic illness do not want it. Yes, there are many of us that want to get better but self sabotage. There are others that haven’t come to a point where they can really try to change. There are also those who do everything they can. No matter what, the suffering is real, the emotional impact is horrible and finding an improvement in quality of life is an incredibly hard and arduous commitment. The illness is real and so are the obstacles to getting better. I personally try my best to really make a difference and move forward, I can’t always, but I try. I am severely hindered by my GI track, because I still have absorption problems. I don’t know what is happening to my joints and the balance I was starting to achieve has all but shattered after getting sick then having a celiac reaction.

So please, before you issue out your daily dose of skepticism, be considerate and realize that skepticism is meant to find out the truth of things. If the truth is that it is not psychosomatic, take it as it is. Accept it. Your skepticism won’t change anything but your relationship with whoever it is you refuse to believe.