My Chronic Illness Journey

My Invisible

Chronic fatigue/myalgic encephalomyelitis (CFS/ME), adrenal fatigue, IBS (irritable bowel syndrome), fibromyalgia, food intolerances, migraines, dysmenorrhea & ovarian pain, disordered eating, depression, anxiety, and suicidal thoughts. My invisible illness journey, like so many others, was not easy. In fact, it was freakin’ hard. A mountain that I was too tired to climb.

Looking back, I’m proud that I made it through. I am so, so proud.

It was the end of October 2011 when I got sick. Over six years ago now. I was working as an au pair, or nanny, in Auckland and suddenly couldn’t get out of bed.

It was hard to see a cause at the time. I suppose it had been a stressful year, though I still think of that year as one of the best of my life. That was the year I met my husband and my best friend, and got to have a small part in raising two beautiful little girls. But, a family friend passed away in October. And I was a victim of cyber-bullying right at that time. Plus, my host mom was travelling a lot so I had more responsibility during that time. Maybe each of these played a role. Maybe it was a change in diet. I’m not really sure.

Mark and I had just started dating a couple weeks earlier. It was him who took me to all of the doctors, to the emergency room once, and to get blood work.

The first doctor urged me to take a week off of work (but really, I had no choice). She told me to stay somewhere else, if possible, so that I wouldn’t feel guilty around the house.

Confession: I still feel guilty about having to leave that family. I was never able to go back to work, and I know that was hard on them. When I came back after that week away, I could not get out of bed. I could hardly speak. Mark had to tell them that I couldn’t work anymore and I could hear them from my bed where I lay, immobile and helpless.

After I left there, I stayed in a small spare room in a house with some others my age. Mark had to bring me food, sometimes helping me to eat it. He even had to walk me to the bathroom at time – which is not how one wants to start a relationship.

I wanted so badly to just get better. But weeks turned into months, and I had just managed to get on a plane back to the States at Christmas.


Those with a sudden onset of chronic illness will understand the frustration of going from doctor to doctor with no diagnosis. Even if I tried to count all the doctors and specialists we went to, I couldn’t. I remember one doctor telling me that maybe I wasn’t breathing properly.

They first ruled out diabetes, thyroid, cancer, heart problems, etc. It was a couple months of just ruling out everything and spending a lot of money doing so. We drove four hours to a really nice hospital where they did several other tests, and still had no real answer. My gastroenterologist found pre-ulcers and gastritis and that was as far as we got.

No one wanted to diagnose me with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis). The doctors didn’t seem to believe in it.

That made me feel worse because they didn’t believe that my symptoms were real. The people around me struggled to understand, and guilt chewed me up inside – even though none of this was my fault.

I do want to say that there were sympathetic doctors (and acquaintances) along the way – and I know they really, really wanted to help me. They just didn’t really know how. And I still think of them fondly. Caring people always make a difference – whether or not it’s the kind you’re looking for at the time.

My parents did a lot of research and we found Jacob Teitelbaum’s work on CFS/ME in From Fatigued to Fantastic!  I’m sure that what we did from his suggestions helped a little. I could help out with children’s programs at church most weeks.

It wasn’t until mid-2013 that we found a doctor near us who would really help us. He was an M.D. who had gone back and gotten a D.O. (Doctor of Osteopathic Medicine).

We brought our list, our script, and presented it to him, and I remember my mom and I crying with relief when he said, “I can help you.”

When you give someone hope, you give them power.


They did more tests – some that other doctors didn’t do because of the holistic nature of them – and found adrenal fatigue (which I had been tested for and not diagnosed) and bacteria that they believed I had from a trip to India and Nepal in 2007. They gave me a book called Adrenal Fatigue: The 21st Century Stress Syndrome by Dr. James L. Wilson. And I turned a corner.

After cutting out sugar, caffeine, dairy, and gluten, we added a probiotics, a powerful set of pills for

Our church was doing a Vacation Bible School that week and I did the class that I’ve done since I was 13 – and I realized that, hey, I enjoyed teaching.

I was feeling better and my doctor was really optimistic so I signed up to teach high school English in a small town close to home.

Those two years of teaching were phenomenal! Oh, how I loved it! I loved waking up and being able to get out of bed. Every day was a gift. There were still some bad days, but I always managed to recover. During this time, I did chelation therapy and continued to see my doctor. Though I used all of my sick days, I felt that my life could be full again. I was making a difference and I was happy.

Mark proposed (we had been doing long-distance for four years) and we planned a wedding in three months. We got married in November 2015 and came back to New Zealand after New Year’s.

I didn’t do so well after that. We had planned on me working, but I was sick all the time. We were happy, but my health took a turn for the worse.

We did some doctors again and tried different things – and the same things as before – but I was losing hope. I blogged to help me through the hard times (through a loneliness series, some lies we tell ourselves, and No-Sugar September posts). But after a few months, the brain fog and body fatigue were too much. I was in pain half the time and we just coasted until a couple of months ago.

During this time, my depression got worse. I felt suicidal at times. This is something that is important to realize about invisible illness: It is hard for us to stay hopeful. My husband helped me so much during this time. It could not have been easy for him to see me at my worst.


We had heard about this program called The Lightning Process for years, but hadn’t done it. We knew a couple of people that had been through the training by this time, so that helped us finally sign up.

I’m writing this post now without any brain fog. I’m not in pain. I’m not tired.

I am HAPPY and I am HEALTHY.

Just in the past week, I have done three huge walks and several shorter ones.

Two months ago, I would have struggled to do half of a short walk. And then I would probably have been in bed for a couple of days recovering.

I’m cooking and cleaning and showering whenever I want now! This sounds basic, but some days I had to choose between taking a shower or talking to a friend because both were exhausting. And there are people that are way worse off than I was.

I’d love for you to read about how I’m living a full life now. Tune in later this week to read about it! I hope it can help someone out there who feels hopeless, as I once did.

My Eating Struggles: Disordered Eating & Binging

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This is one of those uncomfortable posts for me, but I want to share. At the very height of my eating struggles, I longed for a post like the one I am about to write – someone with whom I could identify, who might help me know what was going on, who could tell me what to do. Google didn’t help, Pinterest didn’t help, Facebook didn’t help. Sometimes you need another human. I want to be that human for you if that’s what you’re looking for.

I’ve been trying to learn more about eating disorders for two or three years now because I’ve struggled with this feeling of being out-of-control around food – like what we’ve talked about with Binge Eating Disorder. I never told my doctor and, until now, I’ve only told maybe three people. From other kinds of therapy, I knew the right steps to find help. But I couldn’t find a place where I could go. I couldn’t find a web site with answers to my questions.

Here are the steps I knew I needed to take:

  •   I knew I needed to tell someone
  •   I knew I probably needed professional help – doctor.
  •   I knew I needed to build a support system for accountability
  •   I knew I needed to figure out how not to throw up
  •   I knew I needed to develop a good relationship with my body
  •   I knew I needed to develop a good relationship with food

But, that’s all that I knew.ive-been-strugglingwith-disordered

The entire year of 2015, I struggled with eating. Did I have a disorder? I don’t know. I should have told my doctor, found out what I was dealing with, and taken steps from there.

Yesterday, I told you that I got confused along the way from the 1990s on. But then in 2011, I came to New Zealand and began to have stomach problems accompanied by severe fatigue and depression. By November of that year, I could no longer work and started the process of going from doctor to doctor. I went back to the States. The development of irritable bowel syndrome (IBS), gastritis, and some pre-ulcers led to disordered eating for me. All of a sudden, everything I ate made me sick. Chronic Fatigue Syndrome made it worse because it was hard for me to get out of bed, let alone think of what I could or should eat. I wasn’t eating much unless someone helped me.

I began cutting out dairy and gluten and acidic foods like tomatoes as I learned that they affected me. The range of food I could eat was limited, and I was lucky to have people helping me along the way. My mom went through and made lists of things I could eat so that it was less confusing. My dad would bring me food home from town at any opportunity.

Somewhere in all of this, I started skipping meals. At first, this was because I was not on a schedule – sleeping most of the day and night. It was easier when I quit sugar for a few weeks. For a time I felt better and started teaching, but I was still not eating much during the day. The more I didn’t eat, the more I craved easy carbs and sugar again.

I started binging at night in private. I would avoid going places where I might see someone I knew, and if I went to a restaurant where people might recognize me, I would get something healthy to eat. At the supermarket, I only bought healthy food because some of my students worked there. I began to care about what I ate around others. I began to hide what I wanted to eat and was craving to eat. I’d get annoyed when well-meaning people asked me what I had for lunch or what I was going to eat for dinner. I often didn’t tell my boyfriend (now husband) everything I ate when he asked, and he asked almost every day on Skype just because he wanted to make sure I was eating enough.

I was skipping meals, feeling good about not eating; then, I was eating out of control later on. I’d feel guilty and then abstain from meals again. Then, I’d binge again and feel guilty. Sometimes, I even purged. My binge episodes were embarrassing and I hate typing this out for the world to see. I’d be so hungry that I’d order two or three times the amount that I would normally eat. And I would scarf it down more quickly than I’d ever eaten before. I’d pretend that I would just eat half of it and save the rest for another meal. But I never did. The more fast food I ate, the more sugar I craved, so I ate a lot of ice cream and welcomed the sweets my students brought to me, though I tried to eat them in secret. I threw up a lot of what I binged, and to this day I’m not sure if it’s because I wanted to or because I really felt sick. Maybe it was both.

It was like I was two people: a health freak and a fast-food monster.s

I don’t remember what point I was at when I realized that I needed help. But, I started looking for it online at first. I wanted someplace I could call that would help me through – tell me what to do. I wanted to find an article to which I could relate. I didn’t want to ask the people that loved me for help. I didn’t want to bother them. I couldn’t find a place that was just for people struggling with food.

I didn’t know what was wrong with me. I knew that it wasn’t anorexia or bulimia and I believed the lie that I had to look like I had an eating disorder in order to ask for help. I wanted to talk to my doctor about it, but I felt like he would look at me up and down and shrug me off because I wasn’t bony. Which would never have happened.

I finally talked to my best friend and she helped with a plan to get control. Without her, I’m not sure I would have made it through. She helped me to see that there was a cycle I was repeating: starve myself, binge, feel guilty, repeat. She told me that my metabolism was messing up and that by not eating, my body was just confused. That’s why I was gaining weight. After I talked to her, I talked to my boyfriend about it, and we came up with a plan for him to help me. He asked me what he needed to do to help and I told him what I needed. He would remind me to eat and not to skip meals in a positive way. I would not lie to him about what I ate or did not eat. He would encourage me, and I would accept the encouragement. I talked to another best friend closer to where I lived and she helped me as well.

My boyfriend and my best friend got me over to New Zealand last year during the American summer, Auckland winter. I cried a lot, and hated food. Everything I ate – even apples or oats or other things we consider healthy – made me feel guilty. I hated eating around Mark. But both of them looked after me, talking me through it. They were the support team that I needed and we made plans on what I needed to do when I got back to the States.

Because I couldn’t find where to go, I joined the YMCA to start taking care of my body the right way. I was very careful about this – not to over-exercise. I needed to make exercise about loving myself rather than hurting myself. One reason I joined there is because I saw that they had a thing called “wellness coaching”. I knew that I wouldn’t feel comfortable with a personal trainer at this point, and I wanted some sort of nutritionist – or really just someone to talk to for a little while. I needed someone that could work with my fatigue – someone who wouldn’t judge me.

For a month, I met with the wellness coach. She made me a very basic plan that I could stick to. She saw that I couldn’t talk about food without crying, and she was patient with that. Little weekly goals: Eat little meals throughout the day, try to go to one workout class a week – a small one, and come see her weekly. She gave me information about protein to eat and she basically just listened to me. My larger goal was to build a healthy relationship with food while building a healthy relationship with myself.

Since then, I have married and I am doing well eating in New Zealand. From time to time, it’s hard. But it helps having my support team in place. You who read these blog posts are on that support team now, whether you know it or not. And I am grateful.

This blog is the start of something that can help others. I want to have a center somewhere along the line. There needs to be a place where people that are struggling with food, depression, self-image, and just general life struggles can come and find sanctuary. I want a literal, tactile Little Sanctuary. I want it for you and I want it for me.

In the next few weeks, we’ll start fundraising here to create such a place here in Auckland City. And I will be working hard to make this dream a reality. It’s my birthday this weekend, and this center is my dream for the year – and will hopefully be a place where women can find help for years and years to come.

Disordered Eating

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In a world with so many voices telling us the “right” way to eat, it’s hard to know what is actually correct. My brain gets frazzled trying to keep up with it all. It’s just so overwhelming.

disordered eating for pinterestI want to do want is right. I don’t want to do what is wrong. My sense of morality becomes interwoven when it comes to eating.

My generation has grown up with the mentality of 1990s diets. Yeah, there were good things, too – like Boy Meets World and Saved by the Bell. Oh, and obviously Full House. But, we were also taught that carbs were bad (Atkins diet) and that we needed to cut out fat. We were told that margarine was always better than butter and that if the package said “sugar-free”, we should go for that brand. Counting calories was a good thing – the less calories, the better.

I’ve learned since that the ‘90s really messed me up as far as food goes. I naturally wanted good food, but somewhere along the way I got confused. I began to see fat as negative, carbs as negative, and even protein as negative. More on this tomorrow.

Today, we are taught better things… but from too many people. You have Paleos, Vegans, Vegetarians. You have the Gluten-Free crowd, the No-Sugar crowd, the No-Dairy crowd. You have the Eat-Mostly-Meat Texans and the other Deep-Fry-Everything Southerners. There are those who believe that the less you eat, the better. Some believe you need to eat more and more, and some even say you should eat whatever you want. You have those who still have the diet mentality – we should always be trying the next big thing to see if that one will work. There is an excess of diet pills, of protein powders, of supplements. What do we choose? Who do we listen to?

We’ve become disordered. Maybe we don’t have an eating disorder, but that doesn’t mean we’re not confused.

The most succinct information I’ve found on Disordered Eating comes from the National Eating Disorder Collaboration (NEDC) based in Australia, so this information comes directly from their website. I recommend going here to learn more. In fact, their fact sheet on disordered eating and dieting is one of the most helpful resources I’ve ever read.

NEDC defines Disordered Eating as “a disturbed and unhealthy eating pattern than can include restrictive dieting, compulsive eating or skipping meals”. Examples of this might include:

 

  • Fasting or chronic restrained eating
  • Binge eating
  • Self-induced vomiting
  • Unbalanced eating, such as restricting a major food group (i.e. fats or carbohydrates)
  • Laxative, diuretic, enema misuse
  • Steroid and creatine use
  • Using diet pills
  • Dieting, which is “one of the most common forms of disordered eating”

 

People with disordered eating patterns might experience some or all of these:

 

  • Fatigue and/or insomnia
  • Overeating, resulting in weight gain
  • Feelings of guilt & of failure
  • Guilt and self-disgust resulting from binge-eating, failure to stay on a diet, or gaining weight
  • May isolate themselves out of fear of social eating
  • Feelings of low self-esteem
  • Impaired emotions
  • Increased thoughts of suicide
  • Head and/or muscles aches
  • Osteoporosis
  • Diarrhoea and/or constipation
  • May develop or have an eating disorder, such as anorexia nervosa, bulimia nervosa, Binge Eating Disorder, ARFID (Avoidant/Restrictive Food Intake Disorder), or OSFED (Other Specified Feeding or Eating Disorder)

Disordered eating is, I guess you could say, the “gateway drug” to eating disorders. It can start with a simple diet. It can start with hearing too many voices and cutting out certain food groups. Have conversations about healthy eating practices – real ones – like eating and balancing fats, carbs, and proteins. Begin to talk about good fats in a positive way – avocadoes, nuts, olive oil, coconut oil, milk, yogurt. We can’t tell someone that might struggle with disordered eating that avocadoes have fat, especially if we have a negative tone about it.

Changing our perception of food to a positive one will help yourself and others. I, for one, am trying to shift my views on food. Join me in fighting against the noise surrounding what we should and should not eat. Be a positive voice for those who are struggling.