Fibromyalgia and Chronic Fatigue Syndrome
What was the experience that changed me?
People always said I was independent, strong, capable, the type of person that can cope with anything. I used to believe that too. I suppose I did everything to maintain this image. My mantra was You can do this! And I did. I was determined to make sure my family would be okay. I worked hard, paid all the bills, raised my kids, continued studying, got promotions at work.
So, I worked. And I worked. In the early days, I was getting by on about 4-5 hours sleep per night if I was lucky. There never seemed to be any time to just sit down and relax. There was always something that had to be done.
When was it?
A few years ago, I noticed the first signs that something wasn't right. I was getting pains in my neck, shoulders and back for no good reason. I noticed I was tired all of the time too. Not just tiredness, but an unworldly exhaustion. I put this down to overdoing it a bit and tried to catch up with relaxation at weekends. This didn't work though; I never felt replenished.
What happened?
The symptoms got worse. After work, I would fall dead asleep in my chair, overwhelmed with pain and tiredness. Chores were being 'postponed' and I started responding to friends' requests with a 'maybe' rather than my usual 'hell yeah!', knowing I would later find an excuse to cancel. I was exhausted. There was nothing left in the tank for extras such as fun.
I went to the doctor to ask if there was some sort of tonic I could take to help fix the problem. Over a series of months, I was prescribed an arsenal of painkillers and brain zappers. I became a Big Pharma zombie. There were tests and back-and-forths to the hospital.
Eventually, I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. I was told there was no cure, only symptom management. I didn't like this answer, so I continued for a while as normal, thinking I would get through it somehow, on my own, like I always did.
I researched everything online until my eyeballs were raw. It seemed hopeless at first but I worked on rationing my energy and learned how to optimise my diet.
After a while, I started to see an improvement in my symptoms and gradually came off all the meds.
What did I learn?
The most important lesson, for me, was learning how to ask for help. I never liked to burden anyone, so asking them to spend time on me was a great discomfort. I just didn't want to do it. It made me feel selfish. Then I learned that my friends and family actually love me and wanted to help.
They'd provide distractions for my youngest son so that I could get a bit of 'me time'. My youngest son even asked for more chores – such as helping to put the clean clothes away – to help share some of the burden.
My oldest son would walk my dogs when my pain was too much.
My daughter would make delicious meals and we'd have pamper days. Sometimes they'd even pick up the dog poo in the garden for me.
I was ashamed of having an illness and kept it secret for a long time. It made me feel like a failure. Eventually, though, people noticed I was forgetful (brain fog), which was very embarrassing. In the end, I decided to just 'come out' so that they'd understand why I was forgetful, not in the mood or just plain reclusive.
I asked my friends to text me instead of phoning because talking was too much sometimes. They also reassured me that they wouldn't take it personally if I bowed-out of social events early or had to cancel. Everything was going to be okay; different, but okay.
I took early retirement from work and concentrated on managing my new life. I adjusted my diet and managed my energy more efficiently. Even if I'm feeling energetic, I don't run my battery down too much. I leave a little in the tank because I've learned I recharge quicker that way.
Rediscovering old hobbies was a great joy. I never had time before. Now I can do my crochet, sculpting, carving, jewellery-making, reading and writing. This works better than any medication.
I learned that it is possible to have a high quality life with these conditions and that people are so kind. I learned that we're all in this together.
None of us are unbreakable. Listen to your body.
And you don't have to do the dishes straight away.
Thanks for reading.
Love
Anj x
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