the trouble with me

Found

Lately it has been raining outside and inside. And unlike the original title of my blog {dance in the rain}, there has been absolutely no dancing.

The warm days are taking their final curtsies, and as the skies are growing increasingly grey and the air increasingly cool, my body is also hibernating. Which wasn’t supposed to happen.

I had written this strikingly positive 2014 script in my head. I held out masses of hope that this winter would be better, because this winter we were staying still in one place, and because I’ve changed my diet radically, and because I’m ‘happy’ here. This is supposed to be the year for getting well.

Now that I write that, it seems extraordinarily naive. Especially in such a ‘doesn’t respond to anything you do’ kind of illness. Especially as I have had five years to ponder the reality that the whole me-in-control concept is false.

If this illness is hanging around until I’ve learnt what I need to learn, I fear it will be hanging around for a long long time. I really hope that’s not how these things work.

I think I have been chasing for the perfectly ripe healing environment, and now that I supposedly have it and find myself plodding into a winter just as miserable as the last four, I am a mess.

Not an external mess. You wouldn’t be able to tell really. If I were to show up somewhere you wouldn’t see the tongue ulcers, swollen glands, red throat, and starry vision. Plus, it would increase tenfold once I returned home, and you wouldn’t see that.

On Saturday night I pulled myself out of bed after a nasty migraine, to attend a party of great importance to me. My eyelids were so puffy that I had to ice them before leaving the house. Later in the night I was talking to a lady I hadn’t met before, and she was charming. Part way through our conversation, my lips began to tremble as I smiled. At this point I became so fixated on releasing my smile slowly and controlling my over exhausted muscles, that in the process I lost complete track of what she was saying. I don’t know if she could see the twitching, but that and my vague replies might have backed up my initial statement that I wasn’t so well.

I feel like I should be joyfully settling down to the ill virus-ridden life with a ‘dance in the rain’ kind of optimism.

“Yes I’m really unwell, but I’m so content.” Smiley face.

“Sorry I can’t come, and no I don’t feel guilty.” Smiley face.

Where is that positivity in the face of sad times which I admire in friends and strangers? I could swear I have had it before. I even believe it will return to me, but in the mean time I feel both unwell and sad. It’s an epically drizzly combination.

Even though I know the moral of the story is not to have my happiness dependent on improvement, realigning my thoughts is slow and uncomfortable. The trouble is that conditional contentment masquerades as real contentment – and then the conditions evaporate, and the contentment is gone. And then you weep because you lost both the thing you wanted, and your happiness.

Perhaps it’s good that I have realised in no uncertain terms that my ‘well 2014’ will take whatever path it will take. It will take it’s path, but my emotional path must be rooted in something else. 

Ralph Waldo Emerson

My 2014 challenge

I have decided that 2014 is my learn-to-sew-properly-with-patterns year. I never would have had a chance if I were on the normal path of life, so I feel a sense of delight. The same kind I felt when I to the beach with a friend on a Tuesday while everyone was at work. It’s an unexpected joy of being off the conveyer belt. It’s like when you’re at a conference and the gluten free option is better than the normal. What?!

I plan to make instead of buy as many clothes as possible this year, because I have both the time and desire to invest in 12 months of journeying from pre-beginner levels to almost decent. Actually decent would be ok too.  

Right now I am making skirts. Last week I made a pale pink cotton, and this week a winter navy blue in corduroy. My plan is to buy patterns which I can see myself loving to wear often {no frumpy lumpies, at least not before I've sewn it}, and then find fabric I like at warehouses, opp shops and on sale. Today that meant saying goodbye to the $19.00 per metre houndstooth at Spotlight. Both these fabrics were $5.00 or less per metre.

I love that this skirt can be sewn in two afternoons. The satisfaction is beyond. It actually rivals shopping, but wins because it is affordable, creative and ethical.

Pattern: Everyday Skirt by Oliver+S
Sewing challenge inspiration: Talia Christine Blog
Next project: Papercut - Ensis Tee

back when life was good

found

I think the grass is so lush in other places. I often think that if I was doing what I wanted to be doing, in good health, I would be living in a sunny meadow.  

A couple of weeks ago we went to Melbourne. I went with my favourite man, wore my favourite dress, and the sun shone. At the end of the day we plonked down on the grass in the Tan with chocolate cake that I’d bought along in my tote, of course. I was looking over at the red brick VCA (victorian college of the arts), with those million memories of music days rushing at me – and the sadness, and the nostalgia.

“Maybe I am well enough to try again.” I mused, and we both know this is not the reality. We have this conversation every Melbourne day, and sometimes in between. We really like this conversation.

“We could get a little tiny apartment close by, and I would work at the Royal Melbourne Hospital, and we could have our lunch breaks together...” Ben was saying.

And then the next part of the conversation goes like this: “Or maybe I should do an Arts degree because then I wouldn’t have the stress of practicing all the time?”

And then we revise it a little further: “If you’re doing an Arts degree, you could do it in Geelong which is less tiring.” But I always say, “But I want to do it in Melbourne, because it makes me feel alive.” {Despite being the city which made me almost dead}. But Ben knows what I mean, soul mate. The conversation always ends with, “But I would probably relapse again, and I don't think it's worth the risk.”

We know that script so well.

When we got home that evening, I had a kind of epiphany, about something I should have known. I have a full life here and now. I’m not sure I would swap it for the one I had, if it came to it. 

In the dreaming I always forget the tied-up feeling that I had. I wasn't a free bird. I've put a pretty filter on some of the harder realities.

My life is full of a freedom and variety I didn’t have. I read Wild Swans by Jung Chang last week, and I had time to look at China on the map, and research Mao. I bought my second sewing pattern, and I gave up practicing my flute to pin and sew. Wednesday bought me back to my needy kittens and all their mess and vulnerability. I spent a sweet lazy Saturday with Ben, free from the old guilt I had in our early relationship: but, I could be practicing now.

You know from my hundred other posts that there has been great pain, and great sadness. It’s not a life of ease, but I realised that I am developing and exploring {sometimes barely, sometimes a lot}, and when my health is a little better as it is now, I even feel like I am flourishing.  And all this, away from the place I thought I wanted to be most of all. Would I really have been happy if it had all gone my way? I don’t know. I think the path I am on is just so terribly right. How could something so unravellingly miserable be so freeing? God knew what he was doing I suppose. 

Category 4, and messages to my husband

Ben is a perfectionist, and he married a perfectionist, which is a recipe for marital harmony. I think. Except that I am a handicapped perfectionist.

One trying aspect of living with me (for Ben, and myself) is the floordrope. I began using this horizontal space in favour of the vertical 5 years ago, the first week that Energy walked out.  Our dog took advantage of it and ate lots of precious underwear. I’ve had to stash my pile of clothes under the doona when the realestate agent came over unexpectedly, and we generally do house tours which exclude the bedroom. Sometimes when the mound was dreadfully high I would lie in bed, and Ben would hang, fold and wash the masses of items. That was love. I find a tidy bedroom absolutely delicious, but the reality is that I can’t have it all. Ironically when most women talk about having it all, they mean 'career and family'. I just mean tidy and well.

If I have energy this is where it goes:

1.    On personal care – showering and eating, and spending time with husband.

2.    On cleaning and tidying living area and bathroom, for sanity.

3.    On life enrichment activities in the form of social interaction and crafts/education.

4.    Usually I don’t enter into a fourth category. It is an AWFULLY rare occurrence. It includes non-essential jobs, hospitality, paid employment, and meal preparation.

Anyway, clothes-putting-away is in Category 4. And the clothes are currently away.

What I have come to realise is that being able to indulge cleanliness desires is a luxury.

I am chuffed that yesterday I put on a whites-load, and hung it out, and today I’m doing blacks. I volunteered for two hours today. I don’t have a floodrope at the moment. I went to the supermarket yesterday – even though I walked past the corn chips four times, and nearly called Ben to ask where on earth the olives were, it was exhilarating.

Ben receives very excited, and terribly boring texts from his me while he's at work:

“I cleaned the bathroom today! And now I’m practicing.”

“Just went to the supermarket J”

and his favourite of all:

“What’s for dinner tonight?”

Each day with this illness is such a tremendous struggle, that I can scarce believe it is true when the burden is lifted a little. I am so thankful to be able to venture into Category 4.

The improvement in my quality of life is so delightful that I struggle with insomnia because I am too hyped to fall asleep. I know, it’s ridiculous. I find tears on my cheeks because this reprieve is excruciatingly nice after all the pain.

The excited, boring text Ben got today:

“It’s amazing to have the stamina.”

something incredible happened today

It is both a blessing

And a curse

To feel everything

So very deeply ~ 

Lately my health has been  bipolaresque. I’ve never been through such a volatile and erratic stage in these five years - this is brand new territory, just to keep me distraught entertained and out-of-control. One day I have severe ME/CFS, and the next I am wondering what to do with my new found lack of malaise. My mental equilibrium is seriously disturbed, as all the flies on my wall will tell you. Can we just decide which I am, so I can get my head around it? All I want to know is whether I’m dying or thriving. I wake in the morning, with not the slightest clue what my day may hold.

Yesterday I was a wreck because I got my hair cut and coloured, and this vain procedure took 2.5 hours. It was insane. By the end, holding my head up without my hands was becoming quite an issue. Driving home was mission hazardous, as cars kept appearing out of thin air, terrifyingly close to my own, and my head was hazy with malaise.

Today, however, I bounced out of bed and off to the Animal Welfare Society. My job consists of climbing up and down ladders, cleaning cages, dealing with diarrhea and vomit - and sometimes kittens. I had no intention of working past my 1 hour 20 minutes. I have a feeling that getting to snuggle ten different fluffy kittens majorly boosted some energy-giving chemical in my body, because 1 hour 30 minutes arrived and I still wasn’t fatigued or sore. It was at 2 hours that I started to feel weary – but when I realised the time, I wanted to spin those cats around in joy.

Two hours – in light of this arduous journey, going out and working for two hours is one of the happiest things that has happened to me in months. I am writing here to restrain myself from running down the street yelling this victory to every human and animal on my path. I worked for two hours without pain!

Just maybe maybe maybe I won’t always be ill?  

Found

feelings

Today my dear blog, you are going to pretend to be an empathetic listener while I pour out some...feelings.

Feeling No. 1

I do not like days where strength evaporates in the night, leaving me no note to explain WHY. I find strength's long unexplained departures obnoxious, and I know deep down that this is not a relationship I should rely on for my happiness. But every time he returns, I'm besotted and become emotionally entangled. He departs, and I'm re-gutted. It's very complicated.

Feeling No. 2

I am bored. Not in the six weeks of school holidays way, but the 156 weeks way. I am bored of trying to quell my boredom from dawn {not literally} till dusk. I have been trying to un-bore myself for years but the lack of boredom results in the lack of health. We go round and round in this dizzyingly slow manner and I just hope I don't perish of it. Actually, my thoughts on perishing wax and wane.

Feeling No. 3

I feel trapped in my body and I have asked many skilled physicians to let me out, but no one on earth seems to have the key. I just hoped I'd be out by now, and yeah.

Feeling No. 4

I run out of positivity at times. I say, "I am tired of continually striving to be upbeat and motivated. I want out." And then I cry and cry because out isn't on the menu.

Found

Found