Tuesday, May 22


photo source

Winter has arrived. I love the cold sharp air, the wet piles of autumn leaves, and the dark cosy evenings cuddled up with Ben and our book. I remember last winter so clearly – from the beginning of the cold days to very end, my immune system fought hard and lost in the battle against viruses. I went from virus to virus with barely a week of ‘normality’ in between; at one stage I even had bronchitis. Instead of just feeling awful from CFS/POTS, I had on top of that the weakness that comes from a body putting all its reserves into fighting evil lurgys, and spent a lot of time in bed. A normal cold in my weak and sickly body plays out as a full blown flu. I feel like crying as I write this – since the chilly days arrived a month ago, I have been sick with a virus and I fear that I will spend another winter in the darkness of ‘double-illness’. My doctor says there’s nothing I can do, and my blood tests show my typical swollen liver as it battles away. I have to wait, and stand aside as it flails around desperately trying to kill off the intruders. There’s a helpless feeling as I think about the coming months, and my weak immune system. Another winter in the home as I sleep, play my flute, knit, write, and generally try to keep my spirits up in the wilderness of feeling unwell. I know that if I take it one day at a time I will make it, sometimes half days is the only way to get through.
Do not worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of its own.
Sometimes I just cry. The thing I love about Ben is that he never asks me why. He knows. He knows that life is hard, and that words can never do justice to the feelings which dwell deep down. Each tear encapsulates a thought – fear, frustration, hope, longing, sadness, wonder, confusion, pain, and dreams put aside. The silence and the tears say more than I could ever offer in a book of my thoughts. He doesn’t even try to cheer me up, say something to ‘help’ or tell me to keep my chin up. There is a point where words are useless, and his arms and silence are the greatest comfort.
I wonder as I’m going to see a friend what I can say to help. And then I remember that just being there, and being an ear is all that is needed at times. Why do I think that I need to have something profound to say, when I know so well that human presence means the most? When I know that trickling tears are not solvable with floods of words?

Thursday, May 17

my washing line

This is my quotes washing line – a mixture of things which make me and Ben smile, and things which we want to keep at the forefront of our minds. I go through a major quote fad, then suddenly find a new one which blows my mind, and promptly discard the old. That’s what I like about the washing line, I can peg up the latest thing which inspires me and take down the others.
I’ve always been the sort who feels exceptionally happy one day, followed by dark gloom the next – my diary is testament to a life of highs and lows. I don’t feel emotions by halves, they engulf me. I literally jump up and down when exciting things happen, and cry for hours by the tissue box in despair. I think this is one of the reasons I love quotes... memorable sentences which remind me of the important things, or remind me to stop taking my little life so seriously! 

lastest favourite quote

a true word

reading is a beautiful thing, make time for it

Friday, May 11


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Today I feel so joyful I could burst. This week I was blessed with three delicious days of good health and after a couple of months of mostly tough days, and it feels like golden sun descending on a gray city. On those days where I’m not in pain, I find myself smiling most of the time. I can’t believe that for the first 17 years of my life I took all those pain-free days without so much as a smile. I just assumed that I would wake up feeling fine, and go strong all day. I rarely felt grateful that I was alive and well. I didn’t stop as I walked to the kitchen, with a huge smile on my face, feeling the joy of a body which works. I didn’t relish the sensation of walking and running and standing and talking, without a struggle. I felt my health was a right, a given, an always – definitely not an extraordinary gift.  I was frustrated if I had a cold or a stomach bug, but afterwards I forgot the temporary interruption to my health and carried on, as ungrateful as ever.
If I had never become so sick, I would not be this joyful today as I experience and appreciate health, the beauty of being alive! The simplest thing makes me feel happy – going to the supermarket on a well day without having to wear sunglasses to shield my sensitive eyes from the lights, and walking around like a ‘normal’ person, putting things in my trolley. I feel excited as I do these things, unhindered by the illness which usually holds me captive. I feel so normal, and yet I suppose most other people in the supermarket aren’t rejoicing in their ability to get the groceries. It’s the little things, the things which I never appreciated, which I now treasure.
Tomorrow is an unknown – I might have another beautiful day, or I might be mainly couch bound. So I'm going to enjoy today’s moments, today’s sunshine.