Claire, just remember, you did this

by Claire

Fairhaven was a great success. Guy and I stayed there for two weeks to test the theory that my allergies are significantly contributing to my fatigue. I started to improve slowly in the first week, but by the second week I was able to walk, go on outings, go shopping, cook and clean and sit up for extended periods of time. On the second-last day I went to the beach for a few hours where I swam in the ocean three times, went for a long walk with a friend and then went to the pub for lunch. I had proper conversations where thinking and talking wasn’t difficult. I felt like myself again, without cloudy thoughts, confusion, frustration and fear.

Coming home felt like walking back into prison. I dread so much the physical constraints – not being able to do something because I am too tired, and not wanting to do anything because it will make me sore and tired. Even more I dread the mental cloud that comes with it, my thoughts are dull and slow and I am easily overwhelmed and confused. This slow, fearful person is not me, but every day that I am back I can feel its hold over me getting stronger.

It has been two weeks since leaving Fairhaven and after a big day yesterday the post-exertional malaise is back in full strength – it is almost as though I never left home. I slept solidly from 10pm to 8am last night but I was still so tired I went back to bed immediately after breakfast. I have fibromyalgia all through my legs and lower back. My hands are weak and floppy and it’s difficult to concentrate on writing this article. I feel dizzy when I move my head and my field of vision is much narrower than usual. I’m nowhere near as bad as I was after my square one collapse, but it’s difficult to stay positive when my health is crumbling away.

A few months ago when I was having a similarly depressing day my Dad reminded me of something wonderful. In 2001, a year before I became sick, my Dad, a friend and I went on the Great Victorian Bike Ride. The most gruelling day of this ride included 7.6 kilometres of painfully steep road called the Tawonga Gap. He showed me the photo of us at the top saying “Claire, just remember, you did this”. Ever since then I have clung to this memory – the sweat, the burning muscle and the satisfaction at conquering that hill. It gives me strength to know that I was not always like this, to know that I was a strong person in control of my own life. It helps me remember that the fatigue and brain fog aren’t me, and while they may control some aspects of my life, they don’t define me.

Today this memory has even more significance. After such a positive reaction to staying on the coast, Guy and I are looking for a house to rent in Torquay or Ocean Grove. Once we are there I will get better. I am remembering the feeling of having a powerful body, the exhilaration that exercise brings and the healthy, heavy feeling of tired muscles. Now it’s not just a memory to give me hope and strength, it’s something I can look forward to.