Part 2 My Fibromyalgia Trigger

November 26, 2024

DO WHAT YOU LOVE AND YOU WILL NEVER WORK AGAIN IN YOUR LIFE…

November 7, 2019

… my FMS fibromyalgia syndrome trigger

I could agree with that for the first few years as a freelance photographer. I loved what I did. I loved editing photos until 3 a.m. because I was busy with my little boys during the day. I loved going to weddings on the weekends to photograph them from morning to night.

Life changes, the children grow up and I get a boost and the business is allowed to grow as well.

Suddenly it became work. And I gradually became more and more unhappy.

I hardly wanted to take photos in my free time anymore, and my personal projects became fewer and fewer. Until they also felt like work.

But now there were more bills to pay and the pressure was growing, and the work-life balance that I had had so well under control in previous years was almost gone. It was all about meeting a target. I completely lost the ambition to work beyond that. The main thing was that I was in the light green zone.

So: Back to the roots!

I gradually scaled everything back down and worked like I did at the beginning and was able to breathe again. I felt lighter and freed. I had time to drive the boys to their courses again and was in bed by 10 p.m.

At the same time, my husband also put the brakes on his business and we had more time together during the week than we had since our training. The children no longer had only parents who worked at work. They had something that is pure luxury - someone who is always there for them. My husband blossomed again.

I physically deteriorated month by month. Then, worryingly, on a weekly basis.

That was the time when fibromyalgia wanted all my attention.

MY JOURNEY WITH CHRONIC PAIN IN MY LUGGAGE.

For a few years I simply worked too hard with too much stress on my shoulders.

My immune system has always been weak. As an employee, I had accumulated a lot of sick days. As a self-employed person, that was never an option. No work = no money.

I have to admit that I have never eaten healthily or exercised because my “exercise-induced asthma” quickly made me lose interest/breath.

But then the new fit lifestyle caught up with me thanks to my dog Kanda and it was a nice balance to work.

I learned that you can exercise without running and jumping and enjoyed/actually enjoy barre-inspired workouts and yoga.

Thanks to Pinterest and Instagram, it was also fun to learn about healthy food.

So I have done a lot of good for my body since the beginning of 2016 (when Kanda came into our family).

Unfortunately, it was too late.

The warning signs were there from the beginning. When I was planning the big photo studio in 2014, I had problems staying awake during the day. I put it down to working at night. My solution: just take ten minutes of power napping a day.

Ten minutes eventually turned into 30 minutes a day - even during the lunch break in the studio - and then, when I was able to leave the studio after a year (luckily), I slept for 1-2 hours a day at lunchtime before I picked up the children from kindergarten and daycare.

It wasn't just: "Oh, I'm going to lie down for a minute." It was the leaden feeling that I just couldn't move anymore. I closed my eyes and was gone. I only dream about that now, while I lie awake at night and try to survive during the day, totally groggy.

I would love to sleep that well again...

At the time, I found it a terrible evil. I felt like I was lazy. There was still plenty to do. My husband works hard every day. I just lay there and slept. But it just didn't work. I got up at 7:30 in the morning and could hardly stand on my feet by 12. Driving was impossible in that condition.

So that was the first sign, and it went on for two years from the first power naps. I had good phases in between with homeopathic preparations, but as soon as I stopped taking the expensive things, it started again. My physical fitness got worse again because I had sore muscles for a week after a training session.

And then the tiredness suddenly disappeared.

I remember wondering at the beginning of 2019 why I didn't suffer from spring fatigue like I had throughout my entire adult life.

…

The previous year ended great and the new one started so well, I was fresh and full of energy! 2019 should be the year in which I start photography again! Projects are planned! The studio in the house is being renovated! Both children are already very independent! No more high financial burden! Perfect!

And the trip to South Africa was getting closer! How we love hiking! So much to see and explore!

When we climbed the mountain in Tsitsikamma in April in very pleasant South African autumn temperatures, it became clear to me that hiking was over for this holiday.

The fact that I had been running out of breath for a few days already was because I was coming down with a cold.

But the fact that I got such severe pain when climbing (that is, only over hill and dale, not along rock faces) and that the moderate pace caused my exercise-induced asthma to flare up again after years and then I pulled my knee ruined the rest of my hiking plans.

When we came home after two weeks, I continued to feel pain. As usual, I carried shopping bags from the car and then up six steps to the apartment and the next day I had sore muscles.

Other little things started to hurt as if I had been training for an hour. But then there were days when nothing happened. It was as if I hadn't had to hobble up the stairs in pain the day before. I could take two steps at a time again.

And then I sit at the computer for an hour and my body has been stiff all day. When my hands started to cramp, I turned to Dr. Google. Why didn't I go to the doctor?

Because I went to see them because of my leaden tiredness and they dismissed me as being too young to have anything to worry about. I don't like the feeling of being disappointed by someone who I was hoping would help me. So that was the end of the doctor's discussion for me.

So when I typed in “constant pain all over my body and cramping hands” I came across the term fibromyalgia for the first time.

And I could completely confirm all of the symptoms listed.

That day I also had the courage to complain on Facebook again. As I mentioned, I've always been sick a lot and I complain a lot when I'm confined to bed out of boredom. That's why I didn't want to constantly annoy my Facebook friends.

If only I had continued doing it! So many people also replied to me privately saying that they knew the problems and that they also had chronic illnesses.

Continue in the next part: Doctors’ marathon and the diagnosis