My body has changed BUT I’m still me

  • Beryl Spencer.
    Beryl Spencer.
  • Beryl receiving an award from the University of the Sunshine Coast in recognition of regional contribution for community work, small business and advocacy
    Beryl receiving an award from the University of the Sunshine Coast in recognition of regional contribution for community work, small business and advocacy
  • From the veranda of the Spencer’s property
    From the veranda of the Spencer’s property
  • The Spencer’s property Live & Let Live
    The Spencer’s property Live & Let Live
  • Speaking at an Aged Care Breakfast
    Speaking at an Aged Care Breakfast
  • Working with disability group
    Working with disability group

Photos: Beryl Spencer

 

I walked into my GP’s room after a call that I needed another appointment. I had been suffering a range of symptoms following a bad flu contracted after a visit to hospital for simple surgery. The flu had left me fatigued, achy and unable to carry out my normal home duties.

While attending my physiotherapist, he suggested I needed a blood test for rheumatoid arthritis.

So here I was sitting in the doctor’s office when he told me, “You have rheumatoid arthritis and your tests results are very high.”  

My first response was, “Well at least we know now, I’m sure I can manage this”. Brave words, but little did I realise the journey ahead.

In the ensuing months of trips to specialists for medication that would work for me and endless blood tests and CT Scans, I found out that the rheumatoid arthritis had caused inflammation of my arteries and my immune system was severely damaged. So now I had three to four specialists to attend. I already had osteoarthritis which had become acute inflammatory. I have had post shingle neuralgia in my thoracic spine since 2006. I felt like these diseases had got together to wage war against me. I had made the mistake of giving too much of myself to the community and now had little in reserve.  

Yes, my body has changed. I can no longer garden or drive my car or attend all the community groups I have worked in and for many years. I must avoid contact with others to minimise risk of infection.  

My husband and I  regard ourselves as country people. The property where we live has been in the Spencer family 150 years  and we love the life. We and have been in farming all our lives, with a few other small businesses to keep us afloat. Our property, Live & Let Live, is near Kilkivan, a small town in the Gympie region of Queensland 224 kilometres north of Brisbane. Country living has its disadvantages, though. Constant travel becomes a challenge to a hurting body. I often think about those much worse off than I am.

We have received great assistance through My Aged Care and aged care providers Local Home Care and Blue Nurses. I am so grateful for these services and others and have found some rural based personnel who are so understanding and accommodating.
 
Over many years I was involved in the disability sector, so I knew the technical needs of those suffering disability. Now I am experiencing it first-hand. I’m not sure I enjoyed it, but we now have an accessible home!

I am thankful for the assistance we have received from available services. It lessens the tyranny of distance. I am aware how difficult it must be for families living in Far Western Queensland. There is much to do, and I want to advocate on these issues.

I must constantly reconcile what I feel inside and what my body dictates to me.
 
I feel invisible in discussions about my health. Do I matter? Is it just about fixing things?

How does a once strong person reconcile with losing that strength?

I still love the thought of gardening; it’s part of me, like the land we live on.

I miss so much being able take the car for a drive.

I miss the social interaction and the intelligent conversation that I had with service providers and Government ministers, and I miss friendships made working in community. I’m learning to say goodbye to some things and to take up writing and advocacy via the  internet to encourage others.

I can still type most days and manage a little craft.

I need to look beyond ‘this patch’ in my life and value what I can do. My body has changed but I’m still me.

 

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