Margo’s Story
The invisible story of living with Chronic Fatigue Syndrome
Writing this felt like therapy to me.
Never before have I dived into my emotions on paper about how Chronic Fatigue Syndrome (CFS) made me feel. I hope those with CFS can relate to something below or if you know someone with CFS, you have more of an insight as to what is going on inside their minds.
I have broken Chronic Fatigue Syndrome into 4 words:
1. Confusing
2. Lonely
3. Invisible
4. Unrelatable
Confusing
CFS is a tricky illness to diagnose. No one really knows what causes it and no tests tell you that you have it. I hope one day they develop something similar to a covid test. You’re either negative or positive.
Lonely
When every test comes back normal, things start to feel really lonely real quick. In my experience, it took 6 months for a specialist to diagnose me with CFS. In some cases, I’ve heard it took some people years.
After coming home from one of the most amazing trips of a lifetime, World Challenge in Costa Rica, I never recovered from my jet lag. I was weirdly tired, sleeping for at least 4 hours a day. While I was away I had unintentionally lost a lot of weight. I will never forget that first look I took in the mirror after being in the middle of nowhere for 4 weeks. I looked at myself in utter shock.
After a few months, the extreme tiredness and fatigue weren’t going away. We began to investigate and figure out what was wrong because that active 16-year-old was not her normal self. Blood test after blood test everything came back ‘normal’. According to the books, I was a healthy young female. This is when the loneliness, sadness, and self-sabotage started.
“Maybe there really is nothing wrong with me?”
”I’m going crazy, why do I feel like this but everything is coming back ‘normal’?”
”The doctors say nothing is wrong with you so get out of bed.”
”You have no medical certificate so get back to school, you have exams.”
”You must start back exercising, you’ve done nothing in weeks.”
The more I did, the worse I got.
A panic attack led to a hospital visit, but of course, everything was ‘normal’. I can’t recall how we got onto this specialist but he was my saving grace. I finally walked out of a doctor’s room with a diagnosis. Chronic Fatigue Syndrome. The relief, the emotion, the realisation that no, I’m not crazy, I’m sick.
The relief took its toll and oh did I hit a wall. I was bedridden for the best part of 2 years. Walking 50m to the kitchen and being absolutely wiped out for the rest of the day. Waking up every morning with a feeling I can only describe as a terrible hangover (maybe that is why I can’t get drunk anymore, I’m scared from the feeling) and body aches so bad I couldn’t move from the pain.
To someone who is wondering what that feels like. When I had covid this is how I would describe CFS feeling like every day but 10x worse.
Invisible
What I found really hard was that I looked normal on the outside but on the inside, I wasn’t. It’s not like a broken arm where it’s obvious something is up. People never knew, they forgot or wondered why I was being so ‘boring’.
I felt so lonely and invisible because I didn’t tell anyone. Now that I look back, my biggest piece of advice is to talk about it. Let all of your friends and family know what you’re going through, otherwise they won’t know. Knowing that they understood why I wasn’t attending events or leaving early was the biggest weight off my shoulders. Trust me.
Unrelatable
The main symptoms of CFS are tiredness, fatigue, and brain fog. These words get thrown around a lot in this day in age. When you ask someone how they are, every second person says ‘tired’ or ‘exhausted’. Therefore, when you say you have CFS, they say, ‘Oh yes, I know what that feels like.’ A response like this really triggers something inside of me. I don’t know why but I think I had so many people around me, especially friends, who didn’t understand what I was going through and dropped me because of it. These were my university days, so I definitely filtered through the bad friends from a young age.
How did I get better?
A lot of CFS recovery is rest. You can’t do much with extreme tiredness, painful fatigue, and minimal focus thanks to brain fog. I definitely couldn’t do, or think of doing anything for the first year.
As frustration started to build, being 17 and not being able to get off the couch, I started spending my small waking hours researching what I wanted to do when I finished school. Rosa was competing in the USA for running – read her story here – so I thought I’d go and together we did a culinary school.
I’m a strong believer that everything happens for a reason. I was seeing a physio for my painful fatigue. I had fallen back into training a lot and she pretty much said, “What the hell are you doing? Stop everything and read this book. You need to get better or else you will do some serious damage to your body.” This book changed my life. After having 5 years of health professionals telling me there was nothing I could do, 3 months after reading this book my CFS has pretty much disappeared.
The book: The Body Ecology Diet by Donna Gates
I always feel reluctant to recommend this book because I don’t believe in diets. This is not a diet you do to lose weight. It is something you do if you are unwell like I was. I look at it as a medical treatment.
Body ecology diet
In a nutshell, I discovered I had a major fungal overgrowth in my gut. All I was craving was carbs and sugars because this is what the fungus feeds on. Essentially, the body ecology diet cuts out all forms of carbs and sugars for 3 months. Again, this is not a diet you do to lose weight, it is a treatment used to starve and kill off the fungal overgrowth within the gut.
The first 10 days were hell. I felt the worst I had ever felt, but I knew it was the fungus dying and flushing out through my body. Keep going, keep going I said to myself. After those 2 weeks, I already felt like a new woman. After 3 months I was a completely different woman.
WOW, what an amazing thing our gut is and oh the power it holds on how we feel.
This is when my passion for food started. What healed me wasn’t seeing expensive specialists or taking expensive supplements. It was simply eating cheap, good ingredients in their whole form. Food that naturally makes you feel great.
Do I wish I never had CFS?
Getting to where am I today was a process, and I still have to manage my exercise and workload. Do I wish I never had CFS? No, I don’t. It has taught me so much about myself, my body, and it led me on the career path I am on today. I get to share my story and inspire you to feel as good as I do.
There is light at the end of the tunnel, I promise.
