Tuesday, May 27

someone on my porch

I was feeling blue going on grey with despair today, and prior.

I began an ineffective inspirational pep talk about how much I have to be thankful for. In a mind as emotionally limited as mine, all I could think was, “Yes. But it’s hard to appreciate all these things when you feel this ill.”

Only two words explain the physical problem: endless poison. The common cold which comes knocking to all each Winter, banged on my door in March and has not departed except for rare half-day trips.

So then, keep plodding. Life goes on.

And life is going on, but in such a painful manner that I dread its continuance. I wake with my red throat, pudgy tonsils, eggy glands, and I sleep with them. I carry leaden fatigue with me for as many hours as I am awake, and then repeat and repeat and repeat. I feel like every vein is infected with this nasty achey poison. I find myself longing for ‘just one day off,’ but I know it would never satisfy.
At some point, my mind became sad too.

We scour the internet for a specialist, a clinic, a somebody who knows something about endless poison. Last year, and the year before, my medics exhausted their virus ideas. Leaden and lifeless, I remember how we hoped this year of stability would be the environmental answer to the problem.

Wolfie barks furiously at something outside, and the something happens to be someone on my porch holding a bouquet of flowers.

It's for me! The angel someone didn't know that I was feeling this way, but knew that constant sickness can bring on misery. Over and over, something has come when I feel most crushed. I put the bloom in a vase with water, and dry my wet cheeks, and keep thinking that it is providence. What else could it be? 

Wednesday, May 21

say nice things

Some people say unhelpful things, lots of people say nothing at all, and a few say the perfect thing – something empathetic, real, comforting. Here’s a list of five comments which have warmed my heart, and would probably do the same for others.

1. “Wow. That sucks!! That must really suck for her. ”

At first Ben told his colleagues that his wife had ‘health problems.’  But as his relationships strengthened, he started letting off the ‘chronic fatigue syndrome’ bomb. The other night he told me that his friend reacted in this refreshingly warm manner.
Yes, it does suck! That simple heartfelt comment seems to sum up the frustration at having reached a nasty stand still at such a young age. This response is perfect, because I can join in and sit for a moment in the reality that this illness is not even close to fun. His work friend got that this was bad, real, and sad.

2. “Please feel free to call it off at late notice if you need to.”

My younger brother wrote this to me. It is possibly the most comforting statement I have ever heard. He said late notice. How nice can you get? Just to know that if my body chucks a hissy and I can’t fulfil our plans, he won’t be surprised or annoyed. The pressure if off, and I thrive on no pressure.

 3. “I have a cousin with that.”

Yippeeee! Not glad that your acquaintance is sick...but, if you have a relative or friend with this illness you probably have a faint idea of what I’m talking about. I love to know that this illness isn’t so unheard of or invisible.  

4. “When I had a cold/flu recently, I thought of you and can’t imagine how you live with that all the time.”

This makes me want to sob. You get it, you have tasted my never-ending sickness, and the fact that you realised what I am going through makes me feel so understood and loved. You know that ‘tired’ is the wrong word for it entirely and I want to hug you right now.

5. “I’m sorry you can’t come. That must be so frustrating for you.”

Usually when I cancel, I get the standard, “Alright, that’s ok.” But what I really long for is them to realise that it’s not just them who is put out. I am put out, probably even more than them, because I really wanted to come and I’m not well enough. And because I repeatedly can’t attend things, I am starting to get really over it.

I feel so privileged to have heard these things{and many more}, and to have such beautiful people in my life. When the pain can’t be taken away, love is a balm.

"Be kind, for everyone you meet is fighting a hard battle." 

"Rejoice with those who rejoice. Weep with those who weep." 
Romans 12;15

Monday, May 19

the way he made me feel


I don’t think I’m anti social. Infact, the happiest times have been exuberant conversations over food and drink. I am anti pain though, and since socialising brings pain, I feel a nasty cocktail of emotions before events. A melange of excitement and dread. Dread.

The event was a Hens, and being a bridesmaid, I was going to be there. I trained up to Melbourne at 12pm, and one minute at a time, I experienced joy and pain until 8.30 pm. I prayed, and drank water, and pined for champagne, and took breaks, and enjoyed, and ached and ached.

But it was Sunday which was cruel, just as anticipated. Overnight I was crushed by a semi trailer; so heavy did my bones and muscles become I thought they would fall out of me. So nauseous, so dizzy, so exhausted to the point of being unable to talk, so utterly hungover without a drop of alcohol. When I was awake, I thought: how can I endure this again after the wedding, but more severe? I can’t. I can’t endure this again, not in two weeks.

But two things broke through. You don’t have to endure the hangover from the wedding now. You only have to endure that hangover one second at a time, when it comes. You never have to live more than one second at a time, and if you can survive one second, you can survive two. Just live this second, don’t anticipate the next and compound the pain.

The second thing that I experienced was love, to such a degree that the memory of pain is wiped over by the memory of being cherished.

Ben got up the morning of my event, and baked Red Velvet Cupcakes for me to take along, with the nuts he had activated for me, and the quinoa porridge. Then he dropped me at the train station. At 8 pm I got a message saying that he had arrived in Melbourne, to save me, to carry me home. He drove me home, and carried me to the bedroom – the bedroom had been dark, dank, bedraggled in masses of my clothes, with dirty sheets on the bed. While I was away he had folded all my clothes, stripped the bed, vacuumed, and I saw white, and clean and clear.

I slept like a submerged log, and the next day he was at church when I awoke feeling poisoned. But my breakfast had been prepared for me, and soon he had chicken soup for my lunch. Later he came to the bed to show me pictures of our bombsite study completely arranged, with all my sewing things ready for me. More soup, more hugs, and then he read my book aloud to me, joining the story ¾ the way through and barely understanding the musical terminology. I laughed till I was hysterical about ‘fugue’ being pronounced ‘foo-goo’. Before I knew it he’d put my pajamas on, and my first day of hangover was over. When he said ‘I love you’, I thought what an action word love was. Yes, he loved me. And that is what I will remember.

The pain couldn’t go, but it could be over powered. So the excitement and dread before were replaced with pain and bliss. The light countered the dark, and I will remember the way he made me feel. I love that love wins over. 

Wednesday, May 14

the first dress

Even though I haven’t really been dreaming of making dresses all my life, I feel like deep in my subconscious I have always wanted to. It feels fabulously feminine to make a dress rather than a top or skirt. I had in mind a thick winter dress for the day time {because who actually goes out at night?}, in a classic black, to wear with tights. I was thoroughly inspired by Jolies Bobines.

Fabric: It was $10 per metre at Joy’s Fabric Warehouse, and I was lucky to have my super sister with me to help decide. I found the button for the back at the Alannah Hill factory outlet {Brunswick Street}, and soon I will be sewing with the darling fabric I bought there for outrageously cheap prices.

The pattern was simple, well explained, quick to cut out and quick to sew – except for the French darts which weren’t marked. Having never tackled them before, I just did my best to make them match by sight, guessed how long they should be by stalking other Saiph Tunics on the web, and tacked them before I sewed. My great fear was that they would end up pointy in a central location, but mercifully they are discreet. 

Because I didn’t want it to be daringly short, I added 1.5 inches to the top. Later I realised that the torso was unflatteringly long in proportion to the peplum. I looked like a droopy waistless nun; overwhelmingly frumpy. After unpicking the peplum to shorten the top, the proportions are better, and the dress hits mid thigh which is my happy length.

I am adjusting to wearing a tunic. It is just so voluminous! But, I think once I have the courage to embrace the space, I will love it. 

Voila! La première robe noire, and I have the joy of having reached another goal.

Below are a couple of other things I’ve made lately – the Scout Tee. Most tees are too low, or high, or tight, or twisted, or thin. But this one is the perfect slouchy tee.

I had some navy and white knit left over. There wasn’t enough for a whole top of one colour, so I decided that the gym can handle navy on the back and white on the front. I consider this fabric shortage ‘sporty’. I copied it from a shop bought tank, and it really is a good thrift. 

Monday, May 5

flu squared


I messaged my also unwell friend and told her that after a couple of hours of being in a cold indoor environment {dressed in many layers and coat}, I now had swollen tonsils and glands again. She replied, ‘winter is an ugly time for cfs’. I basked in her empathy.

During winter I never really know if I have a virus, cold, flu or just cfs. The symptoms are permanent, and vary according to how warm and rested I am. It’s almost like a reward system - Go in the cold, and you will receive tongue ulcers in ten minutes. Eat chicken soup and sit by the heater, and your throat pain will ease. Because of this highly interactive/interfering system, I find myself eating three hot meals a day, numerous hot drinks, and wearing an unflattering number of garments.

The unrelenting succession of ulcers, glands swelling, tonsil swelling and mucus is a melancholic reality – which just got more melancholic as I realised it’s not officially Winter yet. The very best way to describe winter with a pre-existing illness is ‘flu squared’. My brother coined the term.

Melancholy countering points:

1.       I may be fighting harder than during the summer, but I am not as ill as I was in 2011, 12 and 13. It feels very good to be able to look to the past, and look at the present and see differences. 

2.       Woodfire smokes makes for wonderful night time walks.

3.       Each year I learn about another alternative health philosophy or two. This year I am discovering the Indian Ayurvedic thoughts about the main types of people, and how to counter their imbalances. When I read the description for ‘vata’ people, I felt like they were writing about me, exactly, and my version of cfs. I am introducing some very warming, grounding food into my life.

4.       Earthing or Grounding is a newish, rather wacky, possibly unscientific, and very hippy thing. I don’t tell my dentist that I oil pull, and I won’t tell my doctor if I begin ‘Earthing’, but when hydrocortisone and other drugs have failed, you find yourself rather open minded and experiment friendly. A friend is going to lend me her Earthing mat, and I will be sure to let you know if the earth’s free electrons benefit me in any way whatsoever.    

The sharing of any winter-combating ideas will be welcomed. I have already figured out tea and hugs.