I miss running.

Do you ever wonder what your life would be like without your illness? What would you do? What do you miss the most?

I was really sporty. I would play netball, did athletics, would go for a run or on a bike ride…

I miss the sound of my feet against the pavement, the good burn in my lungs, the little spots of rain (sometimes), the wind, the sun…

But, I have new things to happy about. I can rest and have enough energy to play with my nephew. I can cook. I found a new hobby that I absolutely love: baking.

I wouldn’t have baking if I had running. The hilarity of something sugar filled and unhealthy taking the place of something healthy is not lost on me.

There are small joys in every day that I can find now I have to take time out of each day to appreciate them.

What do you miss? What are the new joys you find?


i’m not lonely when i’m alone*

Do you ever get lonely?

Like, I have family and I have friends but sometimes I want something more, someone more…

But I did and I let him go, because it wasn’t healthy for either of us. I’ve moved on, he hasn’t and I feel a bit bad about it. But I’m not cut up. He wasn’t right for me.

We met online (though a reputable site), is it cruel of me to re-open my account now? Only a couple of weeks after the break up… or should I wait a bit longer? What are the protocols here?

I want to date and meet people but it’s impossible. How can you have a conversation when you can’t concentrate? How can you go out when it hurts to walk?

I’m so annoyed and frustrated and I just want to be healthy.


*From Kelly Clarkson’s Stronger


So my plan to post every day has already gone to pot. I missed two days. In a row.

But it’s for good reasons. I’ve been feeling good, baking my usual stuff that I do this time of year and I don’t feel so bad.

I have started a nightshade free diet. No tomatoes, bell peppers (capsicum), chilli (hot pepper), potatoes, eggplant… I think that’s all. It isn’t easy but I’m really noticing a difference with my fibro. It’s not some random fad diet, I got the info from Arthritis NZ so a reputable source.

I’m not sure what else to say. I hope all you Americans who celebrated Thanksgiving had a wonderful time and a good holiday. But let’s be real here, Christmas is coming and I am so excited!



I went into public today.

It doesn’t sound like much but it kind of is. It is so overwhelming. The bright lights, the smells, the sheer amount of people… I enjoyed being out of the house but, god, I kind of hated the whole experience.

But needs must this Holiday season. I have to shop, I have to get out to do it. I have to save my spoons, conserve my energy and hope for the best.

Kindness. Goodness. Magic.

“Where there is kindness, there is goodness and where there is goodness there is magic.” Cinderella (Disney).

I try to be kind. I smile at people. I help where I can. I support who I can. But some people make it so damn hard.

I am a good person. I’m not always a nice person. I can be judgemental and rude but I try to be kind and good.

And so should you. The world is bleak and full of death and terror and things we don’t want to think about. If you can’t find kindness or goodness, the be it. Be what the world needs.

You are the kindness.

You are the goodness.

You are the magic.


Sleep. I need it.

The pain is low but the fatigue is high.
I want to sleep under the night sky.

Insomnia is real,
Tired is all I feel.

I want to dream,
I want to scream!

This life is not fair,
I am living on hope and a prayer.

I need to sleep.
To fall in deep.

Into the darkness of my mind,
Where nothing can hurt me, in kind.

When I wake, you’ll be near,
and my mind will not be clear.

I wish for peace.
This pain and fatigue to cease.

It will not happen, soon.
I just hope to not see the moon…


My constant companion, my curse.

There is no monster under my bed. There is no monster inside my head. There is nothing I can see that is hurting me.

But you’re there. Always there.

In my muscles and my joints. In the nausea, the aches and the pain. My lifetime companion; my most hated friend. I only wish for it all to end. The pain to stop, the sleep to start, I wish that we could part. For a lifetime, a day – hell, I’d settle¬† for a minute… free of these shackles, a life without you in it.

But then who would I be? Without you beside me.

Would I be happy and glad? Or confused and sad?

I do not know.

I do not know if I want you go.

Yes, leave.

No. Come back, please.

I am safe in your embrace. I know what I am able to do, and without you anything can come true.

I hide your pain behind my clothes. My lipstick and my smile. I am not your victim. I am not weak.

I may cry but for every tear I make sure I laugh. For every frown, a thousand smiles. For every extra burst of pain I will keep fighting. I will keep moving forward, always because I am alive. I do not thrive but I survive. Survive everything you throw at me: unbearable pain, unbeatable exhaustion, brain fog, nausea, stiffness, insomnia… the list goes on and on and on and on and on.

I will not let you win. I will not give in. This hell I’m in, I walk alone, the devil burning up every bone. They walk with me but in the sunshine as I trudge through the rain. They leave one by one, only a few remain. Why? I think they like rain. For it brings rainbows and puddles to jump in, it brings life to trees and flowers and animals. The rain is surrounded by sunshine, together they can make extraordinary things happen. Together we can keep moving forward.

1am the pain is not letting me be, and I wonder how can I be lonely? My body has two minds… mine the one I control. And yours, the pain, fatigue, insomnia is all you know and you make it come and go. Like the tide it comes in waves, gentle or crashing, smooth or rough.

Would I be confused or lost? Would I be better or worse? Without you, my curse.