A funny set of learning from a journey filled with pain and fatigue, but these are things I’ve gradually learnt living with a chronic illness.
My story of happiness and wellness didn’t begin until a couple of years ago. Prior to that, I coped, but only barely.
The pain began when I was a young teenager and grew over a period of around 10 years. By 17, when I was at university my shoulders would ache and burn so much at the end of the day that I usually ended them in tears.
No one knew why I had this pain. Some of the doctors intimated that they thought I was making it up.
I was struggling through university, in my final year, when I was hit with an extremely bad bug. Profound fatigue and flu-like symptoms descended upon me like a ton of bricks. There are 9am tutorials from which I can only recall my near inability to keep my eyes open. After a few weeks, I saw a doctor and they gave me antibiotics. It took a further few weeks for the symptoms to recede but the fatigue had made a permanent home.
Doubly burdened, I struggled through the remainder of university, graduated and entered the workforce.
I have since realised that my inability to do and care about a job for long is related to my illness. I need a lot of passion to drive me through the fog, pain and fatigue to complete my work.
After four years, I was barely coping, feeling just a step away from fainting at every moment. I was sleeping terribly and waking unrefreshed. With nausea and levels of pain at 6/10 by 10am. By 3pm pain levels rose to 8/10, the caffeine needed to keep me from falling flat on the desk caused further nausea; the jaw and temples felt as though someone has a wrench and was turning them constantly tighter. Minutes crept by until 5pm, cue an hour-long bus ride on which to keep from vomiting, falling asleep or crying (or all of the above). The evening was a blur of lethargy, waiting until bedtime.
That was my life. Yet, I managed to look normal (albeit a little paler), complete my work and occasionally force myself to socialise.
After many years of struggling and of tests and regular blood tests revealing nothing, the doctor was able to check the 18 tender points and confirm that I had fibromyalgia. That was all that they did. There was no medicine, no advice, and no referrals. There weren’t many books or websites yet either.
The turning point came when my parents invited me to move to Auckland with them. I was able to put the changes into place that I’d been dreaming of, starting with slightly reduced work hours. Working 3/4 time, in a warm climate helped immensely. So did meeting the love of my life – a ruby Cavalier King Charles Spaniel named Coop!
In the first year in Auckland, I didn’t do much more than recover. I worked until 2.30 each day, utilising my skills to support an organisation that worked with vulnerable families. I rested in the afternoons and gradually increased my evening walks with Coop.
The second year was more eventful. I began a writing course (I’d always wanted to do one) and I found an excellent, caring, knowledgeable physiotherapist who introduced me to acupuncture – the only treatment that isn’t akin to torture, and the effects last. Perhaps most importantly, she was the first person ever to understand the extent of what I had been dealing with.
This year, the most exciting things have happened. I started a blog and my own business – these have enabled me to do what I am passionate about. Also, I met a man who not only loves me as I am (for all my quirks) but also wants to understand my fibromyalgia, who wants to help me with this burden. The enormity of this cannot be appropriately articulated.
Some of the things I’ve found that help are:
- Working 3/4 time
- Eating healthily
- Yoga, Pilates and stretching
- Walking my dog daily (for the exercise, the time out and the pleasure of being outside)
- Seeing my physiotherapist every couple of weeks
- and following my passions
With the ability to look back, I’ve become very protective of my new life. I hardly ever lose words anymore, my memory is improving and so is my spacial awareness. The nausea is far less frequent and headaches only tend to bother me every couple of weeks – and they don’t drive me to bed so often. My neck still causes me trouble, but the extreme tightness, dizziness, nausea and faintness is much rarer.
Most importantly, I am living life, not just coping.
I have a larger capacity for empathy. I have been forced to work only enough to live, in a job I am passionate about with no stress, and I love it. Seeing friends bust their guts working 40-50 hours per week in jobs they don’t love makes me thankful that I have learnt that I don’t need the money or the prestige. I’ve gladly skipped the year living in London, buying fancy cars and clothes – because my dreams lie elsewhere.
I hope I make a difference in the lives of those that intersect with mine. I hope I always know what’s important.