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Invisible Boxes

Chronic illness is like having an invisible box surrounding your life. Noone can see the confines, not even you at times. Yet they are all too present. Constricting when you least expect it. Never seeming to widen.

You can see others and what they can do, but you can’t keep up. And they can’t see why you can’t.

Your significant other’s (and children’s) life becomes constricted also. So that you must fight your own box and theirs.

Your guilt over the effect of your illness on them can eclipse even your grief of what illness has taken from you.

It can be a double sentence.

The only way out is through. Some days are harder than others, but you have to keep going. Because there’s no other way, and noone can truly help. It’s you, your body and God.

When you’re having a tough day (week/year/life) it’s useful to rememeber to seek fellowship (I belong to two fantastic Facebook groups and have a few key people) and gratitude. Try to remember the things you are thankful for. Because pain and fatigue and fog and headaches (the list goes on) cannot take that from you.PhotoGrid_1446180811994

I’m thankful for my son, my husband, my family, my dog, my home. I pray these will never be taken from me by my invisible box. That my people will bear with me and endeavour to help me reach outside of the box.

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What Fibromyalgia Taught Me: My Journey so Far

what living with chronic pain and fatigue taught me

This is an old post but all of it is still true today. I stand by all of the things I had learnt back then. This is the story of how I went from miserable to thriving, before I fully knew what thriving was.

My story of happiness and wellness didn’t begin until a few years ago. Prior to that, I coped, but only barely.

what living with chronic pain and fatigue taught me

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.

Coop is gorgeousThe 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 one of the loves 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.

Melissa Gershwyn Aug 13

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)
  • Resting
  • 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 little 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.

If you liked this, you may also like these posts:

Fibromyalgia: Definition, Symptoms, Diagnosis and Treatment

9 Inexpensive Items I Use to Fight Fibromyalgia

My Top Three Treatments to Fight Fibromyalgia