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.