Friday, 1 November 2013

Eighty per cent

What's wrong with eighty per cent?
80% looks pretty good to me, although 90% would be better!

A mate brought to my attention a blog post to which I could totally relate. I found it interesting and hope that you too will find it useful:

Australian journalist Sarah Wilson recently blogged about her autoimmune diagnosis in response to an article by fellow autoimmune disease sufferer Meaghan O'Rourke who was told by her doctor that
"you may always feel like eighty per cent".

It strengthened me to know that "it's not just me" and that my experience of living with "flat batteries" is totally normal for someone with autoimmune disease.  Of course, I have lived with this realisation for some time but it is nice to have it validated.

For years I found life a physical struggle and wondered how everyone around me seemed to carry on their daily routines with ease.  How do they manage to work all day and still have energy to go to a night class? How do they go out to an evening movie and still manage to present the next day at work without skipping a beat?  What are they doing that I am not?  What do they know that I don't?  What's wrong with me?  Am I a weak person?

At the end of a day's work, I would arrive home absolutely exhausted.  Even more confusing were the mornings when I would wake up feeling happy, energised and looking forward to my workday but by the time I had completed the 30- or 40-minute commute, I would arrive at the office feeling flat and needing to go back to bed. 

It wasn't just the I'm-a-bit-tired-I-could-easily-go-back-to-bed daydream: it was full-on waves of fatigue that were almost impossible to resist.  My eyes were "matchstick jobs" where you feel like you need matchsticks to hold them open!  How could that be happening at 9:30 a.m.? 

I know now what I didn't know then: I have a mixed connective tissue disease which has a lot of features of lupus and lupus flares can be triggered by exposure to ultra-violet radiation (UV light).  I travelled east for my morning commute, straight into the morning sun which glared through my car windscreen onto my face, neck, arms and hands.  It was enough to set off a chain of events which hindered my body functioning so by the time I arrived at work, the fatigue had set in.

In  Deadlines & Disappointments, I described how it feels to be functioning at less than 100 per cent.  In Almost There! Affirmation & Acceptance I explained how acceptance of my illness and limitations helped to improve my condition.

Sarah Wilson touches on both of these topics in her blog and shares her insights and realisation that working very hard to "get back to normal" may be making life harder.  I can empathise with her relief to know that it is okay to "back off" and not have to fight so hard all the time.  Being able to 'relax into illness' removes so much stress.

Sarah Wilson  has discovered that one's attitude and perspective can make a difference to one's quality of life.

I have always felt that this is the most important step in feeling better - attitude is a little thing that can make the biggest difference; no matter how sick, no matter how out of control I feel when the body does not recover despite best efforts, my perspective on life is something I can control and change.  It helps me feel better and triumphant - that the illness has not quashed my spirit.

Revel in this power. Use it. 

Use it in any situation, even if you are not sick, and reap the benefits.



  1. Thank you for this post. I've been struggling with the same thing. I always wondered how other people could get so much done in one day, or could function on less than 9 hours of sleep when for me it was quite the accomplishment to get groceries AND get some work done around the house at the same day. I was always told to just "suck it up" but I guess people don't understand how much energy it takes to deal with the pain.
    I agree with you that attitude is everything, and I find that people with chronic pain often are the most optimistic people I've ever met. We're not going to let this bring us down! We keep fighting. Right?

    1. Right you are, Frigga!
      I once read a quote from an endometriosis sufferer (here's a confession: I also have endometriosis and adenomyosis - basically my immune system is totally messed up)

      "People who have suffered know the dark side of life which makes them appreciate the good all the more" and I think this is very true.

      Any day that I can wake up and move around without too much pain is a day to celebrate; a day to embrace; to do all of the things I couldn't do on those days when I was too sick. Any day that I am not in the hospital is a good day.
      There is much happiness to be derived from this.

    2. That's a great quote Jodie, one to remember for myself too.

      I think your attitude towards this is admirable, great post.

  2. How great that you are able to share this. It is important for both sufferers and non sufferers alike. Keep strong and positive. xx

  3. As you know, my mother had cancer. She once said to me that she didn't choose to have it but she could choose how she dealt with it and that she wanted to do so with dignity and grace. That reminds me of you. I love your attitude - you are an inspiration to me and I'm sure to many who know you personally or in the blogoshere. xoxo

    1. Oh Rachel, I am blushing! Thank you for your compliment.
      I am trying to make the best of my situation and it gladdens me know that I can make a positive difference whether it be through living my life the best I can or through sharing my insights and experiences on Lupey Loops.
      Your mother was a wise woman. Her words "dignity" and "grace" resonate with me as these notions are of ultimate importance in my heart to which I strive towards, especially during the difficult times.
      I am touched by your words which have given me strength and determination.