hi struggler, have you tried...?

It's been over 300 days now since I gave birth, or kind of gave permission to have my stomach cut open. I said, "I can't read all that stuff about dying or never walking again, so I consent but I'm not looking at what I'm consenting to," and signed a blotchy left handed signature, a Freudian smudge, thinking to myself, I probably will die of panic, or feel the surgery and then die, and I hate this idea and being an adult even though I simultaneously love that my body grew a baby, and I bet she's not even as sick as you think, I bet she's perfect, and I really hope we both live.  

And we both lived. We have lived strugglingly and lovingly ever after. 

I'm accustomed to struggles, as are most humans. There have been a couple of uncanny similarities between chronic illnesses and the more woeful parts of parenting, which sounds like a miserable thing to say, but it has happily made the whole experience almost familiar. 

I went to an opshop after not sleeping through the night for nine long months, and having chronic fatigue and another illness, and the man at the counter said perkily, "You look well rested!" I fumbled for a reply, but I was so absolutely unrested I could not think of one. Awkwardly I murmmed something about resting during the day. To which I'm sure he thought, see, these housewives just sleep all day, no wonder they're well rested. I have a feeling he either isn't parent, had a unicorn baby who slept in a cot and through the night before it walked {please may this happen to us, there's still time, please}, or snored through his offspring's night time howls for comfort. Or maybe he suspected it had been a while since I'd received a 'fresh as a daisy' type of comment, so he took it upon himself to deliver it. 

Whatever the case. Have you seen me lately?! Probably not, because I'm too tired to leave the house. But the dark moons under my eyes, they take pleasure in shocking me when I pass mirrors. If you looked up my Google searches which you must never ever do because you will think I am unfit to be an adult (I never wanted to be one anyway) you would find ,"how to make eye shadows go away?" written all different ways to get the best search results possible. They said: Get more sleep. I closed the tabs. They have no idea, they have not met my child. They said: Wear make up. That's not 'away'. That's hidden under paint, and I don't like that when I take paint off I feel more fugly. They said: Wear cucumber circles. I don't think we even have cucumber because I'm too sick to go to the shops and Ben doesn't buy them because they're not carby enough for me, and I don't lounge round in a bathrobe with slimy disks over my eyes because that's not keeping half an eye on my charge. I didn't find one single thing that would help, not one glimmer of hope. And then I started finding white hairs, aged twenty five almost twenty six.

Google, Google, on my phone: how come my hairs are already snow white?!?! 

Google said, genetics. I said, sleep deprivation too.

Anyway, I am not well rested. I used to feel unwell after sleeping from 9.30 pm till 8.30 am only waking to coldy inform my bedmate that he was snoring, but now I'm lucky to get till 12.30am in one stint. So, I feel tired-dead-tired-dead, as I expected to. Tired isn't a good enough word. Wasted. Or my favourite for this year: Haggard.

Humans have been trying to make other people's lives better since the first suffering. I have a serious case of it, though I'm trying to reform. It's a way of loving, it can also be a way of irritating. Early on, just after my diagnosis, people who had never had this illness used to say 'have you tried this expensive treatment and this almost extinct herb and this quack of a doctor and this unlikely and exorbitant retreat you can't afford because you're on the pension and this mental health book and this YouTube video, because I think it will cure you?' Every second day. I tried so many things I can't remember them; things which seemed affordable or scientific or whatever. Mostly I only tried the advice of actual sickies, because the other people had read something about my illness for one minute, and myself and my friends had been reading  for years. 

And then came along my baby, who doesn't sleep if she isn't touching me or Ben {slash using us as her mattress}, and 'doesn't sleep through' which is code for 'normal non-unicorn baby'. You know when you accidentally let slip that life is hard? Help arrives! So fast you're not even sure if you asked for it! Usually, a vast array of suggestions you've already dismissed. There was a flood of kindliness in the form of, "have you tried warming her bed up, or rocking like this, patting like so, going to a sleep clinic where you won't sleep for five nights and will consequently end up in hospital with vertigo again, or making her cry till she gags and then gives up because she knows you're never coming back?" And "Have you tried solids, solids, solids?" And "Oh, she doesn't like solids? Mine does. But, I love my food!" Ah. Well that solves the solids question. I only eat with gusto seven times a day.

All the comments were relevant to different kinds of mini human beings, but not the kind I have. And amidst all the kindly comments came this one,

"You guys are troopers. These sensitive koala babies are really hard work, and you're doing so good. You'll get through one night at a time. " 

No advice.

None.

Even though she was the best poised to give it because she's mothered one just like mine. There were also people at church who made us dinners, and said, we struggle too, we have no advice, how can we help. 

As it is with the sick ones. They don't hand out advice, because they know that of course you've tried, and you will ask. Or that you have no choice but to endure, and you merely need a kind word.

They're strangely familiar, these fresh struggles. We have met before.
 An issue not easily resolved. Plodding on, sometimes hopefully and peacefully, and sometimes with bitter lead in my veins. There's always the poignant symptom I am well acquainted with: the struggle to feel untainted happiness for the ones who have what I don't.
It bears the hallmarks of my longing to be well, and my friend's longing for a partner, and my other friend's longing for a child.
This year it just hit. Deja vu. It's all the same, when you simmer away the specifics.

We're all the same.
We've all just weary and in need of a kind word. A really kind word.

if you want to understand me, voila.

Many thanks to fellow CFS sufferer Jessica for making an extremely accurate infographic of my life. 

Our lives. 

 And thanks to my fellow spoonie Lauren for sharing it with me.

unexpected

source

It’s a chilly June morning. The cold lights a red swollen fire in my throat and keeps it burning all season long. “I’ve got a virus at the moment,” my sister warns when I ask her if she’d like to join me on a walk. “Oh no, me too,” I reply. I mean, I have a glandular fever flare like last week and the week before, because it’s permanently active. When I expend extra energy, resources my body usually uses to control the virus, things become a fiery hell. A day in bed. It sounds fairly innocuous. But then again, all things seem innocuous in small doses, and I have a full time job now. We made a decision earlier in the year that we would either move to a warmer climate or buy a winter-long supply of the only thing that helps. The thing is not at all cheap, and not at all vegan, but it helps contain the flare radically. We ship it on bulk from the US. It is made from a calf’s thymus gland, a protein that my immune system needs more of to fight infection.

But I digress from the cold morning. I hustle to eat breakfast, tidy up the lounge, have a shower, because I have to lie down at 8.30 am with the poppet. Aurelia sleeps radically better next to a human, and we made a decision to stop the cot fights and fails, and co sleep for now. I only resent needing to nap with her when I compare to the women whose babies sleep alone, in cots. Comparison is especially the thief of joy in parenting. I know some mums get ten entire minutes to sip a hot drink all by themselves because they share it on social media. I fantasize about cleaning the bathroom without my often groaning spectator. On the weekend I was whittling through the flesh in my lobes, trying to re-pierce my neglected holes because my morning slot is a mad rush to get up and get back to bed.

Neither Aurelia nor I believe that we need to go to sleep at 8.30 am. We lie down thinking this is quite unnecessary, and that of course we can both stay up all day. But in a few minutes she surrenders, and as I surrender to mothering her in this manner, a sleepiness I could have sworn I would not feel, creeps into my eyelids. Maybe this isn’t such an encumbrance after all. Maybe this is actually the perfect thing.

The irony does not escape me. I feel a lot worse on days where I busy myself in these sleep slots. My baby, whose sensitivity and high demands require more hands on mothering than I’d expected, her needs also force me to lie down twice a day. An unwanted, frequently bemoaned, and yet vitally restorative practice. I do not believe in random events, and I thank my Creator for the silver lining.

I sense that silver linings are woven into the universe, and with time {sometimes many years}, and a softness of heart, we glimpse them. Closer to home even than rainbows and stars in the dark.

I grieve winter’s effect on me, but when spring arrives and we drive through the country and buy our first jonquils for the season, I swear I am happier than most. I get a relief+joy cocktail appropriate to the degree I have suffered.

Having a sensitive daughter is similar. She asks for physical contact all day and all night, and when I recoil from the intensity, I remind myself to lean in rather than pull away from her needs. People everywhere try to procure smiles from her, as she holds her face with porcelain solemnity. They would like to hold her but she dissents loudly and clams up, apart from with one person she knows well. Later in the warmth of our lounge we are privy to the hugest smiles, most adoring eyes, scrumptious cuddles and giggles. That leaning in to meet her needs for security? It is rewarded with the most exclusive view of her true person. The smile she gives me when she wakes from her nap to see me lying next to her? It’s like the golden sun coming out, not even behind a cloud.  

I’ve written about my closeness with Ben, and the chance I’ve had to learn to sew, the unexpected light in the pain and isolation. I love that I must always be fit and healthy because of my diet and exercise regime. The friends I’ve made through computer screens are intuitive, sensitive, compassionate and suffering women who I will love for all my days. Being awake while operated on has been my worst fear for a long time, but even that way of birthing came with a strange glow of empowerment after surviving the ordeal. I didn’t realise till Aurelia was born that having a tiny baby, while complicating things immensely prenatally, also meant that she would be my tiny baby for a lot longer than usual, and it delights me.

But there was one sizable cloud that didn’t appear to have a silver lining. I have long wondered what the point of my education in music and ballet was, once my body brought it to a close. The hours and years of dedication seemed to be a snapped branch. Did it have a place in my life beyond a wistful memory?

Only years later do I see that without the richness the arts bring me daily, I would be even more prone to despair. Sustaining my mind in a long illness; this is an immense value. I don’t want to end my life so much when I have danced around the lounge to Tchaicovsky to Aurelia’s delight, when I have listened to a composer’s representation of all the emotions on the human spectrum and felt understood, seen myself in the characters I read of, been transported in these books to harder eras, and breathed in perspective. If education’s purpose is to enable us to live a rich, abundant life, then that richness is beneficial all the more when we move into a barren place. That richness is sustaining life. Susan Shaeffer Macauley shared in her book this quote: “Education is a matter of the spirit.”

I know this now.

I want to get up even though I hurt, and smell the ocean again, and create a garment, and read another poem, and hug my scrumptious baby, and eat more cake. I think that there is an iridescent lining attached to each crushing cloud.

“There are always flowers for those who want to see them.”

Henri Matisse

let's all wear my shoes

we will fight, we will kiss

I often wonder what the world would be like if everyone was like me. The first conclusion I come to is that there would be no ‘everyone’ because we would be too ill to work for food, and would have starved to death long ago. The unfit do not survive.

After I have finished with this sobering thought, I move on to wondering hypothetically what it would be like if society wasn’t designed for able bodied people, because that is where a significant chunk of my discomfort comes from. The energy packet and lifestyle of the majority is completely out of kilter with my own. Imagine if society was constructed for a different set of humans.

One of my parents, whom I love dearly, is celebrating a significant birthday this year. I was fully expecting the festivities to occur from twilight onwards. This is a lovely time for most to celebrate, after work, over the heartiest meal of the day, lingering on into the night. I had already decided that I was willing to suffer for this. Headaches, insomnia, vertigo, exhaustion, a few days of dysfunction. And then the invitation arrived, and it was for a 10am brunch. Joy erupted inside me. My first thought: oh my goodness, I don’t have to add extra pain to my already pain?! Of course there will be pay-back for the day event, but not to the degree there is for a night event, an event that begins when I have accumulated an overwhelming need to lie down in dark silence after being up for eleven hours already. People have every right to invite me to celebrations that work best for them, just as I have every right to decline and preserve the health I do have. But when they have considered me to a significant degree, that warms me right through to my fingertips. They care about me too. That is exactly when people like me would have their celebrations.

I have been very isolated these past seven months, because of that vicious post-baby vertigo. My sense of missing out has been strong. One morning I decided I could not endure another moment in my dull home with my moaning-myrtle infant, and I went to hang out with my friends from church as they do every Friday. For the first thirty minutes, it was so worth it. I was like yes, this is what I need. Two hours later, lying on my couch, vertigo, unable to care for child, I vowed off the experience. It had been a welcome distraction but the afternoon consequences were too great. I couldn’t afford to suffer that much. And if I had stayed for just half an hour, the part where my body was ok? Well, then I’ve only just arrived and barely settled in before I bluster out. I felt afterwards a stabbing envy that my friends were going home with their babes in tow, and probably getting lunch for themselves, probably even cooking dinner for their families, something I haven’t done in years. I couldn’t even feed a puree to my baby after going there.

The isolation hit me in the face. I crave companionship, but companionship doesn’t come in my size range. It comes long, frequent, and inoppurtune. I could come and go in a manner which works for me, but in my ideal world, I am not the odd one out, always sticking out like a sore thumb, always modifying because the default is not made for me. My utopia is a place where social interactions are designed for bodies like mine. A place where I am not perpetually the uncommitted no-show. Surviving with very little face-to-face friendship, or suffering for what I do partake in, this is one of the most awful parts of chronic fatigue syndrome.

How would people like me get their companionship?

We would meet in very small numbers, fortnightly, in an open air park. To remove the intensity of walls, confined spaces, fluourescent lights. We would meet for an hour, maximum, reclining if possible. We would never meet before 10, or after 4. Maybe we would come by taxi. By broomstick would be nice. We would shop at markets and naturally lit street shops, not malls. We would rest in coffee shops with day beds while we were out in winter, and on the grass in summer. Actually, no, it would always be spring. Maybe we’d all send a message to each other after we’d caught up, saying we were thinking of each other as we recover, reminding each other that the pain wouldn’t last, and it was worth it for our spirits.

The strain from not fitting would be gone, even if the rest wasn’t. The rhythms we formed would be custom made for our abilities, and it would be less lonely.

But, I wouldn’t wish this on my worst enemy.

Let alone the majority. 

you don't know that you're toxic to me

A post I wrote three years ago. 

You don’t know

that you’re toxic to me.

Even you, my close friend,

my incredible family.

You don’t see how I hurt

after we’ve talked. As we talk.

How I ache and burn,

How I lie and wait.

You cannot watch,

as I mend myself.

In my private space.

I long to be with you,

you give me joy.

But oh, your humanity is something my body

cannot tolerate. Anymore.

You stimulate me,

violently,

unconsciously.

I leak, adrenalin.

My head, my ears, my heart,

Hurt.

you assault my senses,

overloading me with sight

emotion

scent

presence.

You can’t see my inward battles.

I need you to leave

I feel unwell

Yes, even with you.

But I feel so rude

that I hide my pain.

Or I want to keep talking

despite the discomfort.

I pretend I am normal

but it always destroys my health

a little, or a lot.

I lie to reassure you.

I lie far too often.

I fear telling you the truth,

That your body affects me detrimentally,

of my fragility.

That you, even you,

overwhelm me.

I limit my friends, I can’t always invest

I can’t bare interaction

often, for long.

We ‘need’ to catch up,

that’s what you say.

But those words make me shiver.

No. We don’t.

Don’t oblige me with ‘need’.

Don’t say ‘it’s been too long’.

It’s not long enough, for me,

if I’ve been silent.

You who just wait and gently offer yourself,

when I’m ready.

for however short a time,

without asking for more,

You are the sunshine.

In your patience, your subtle communication,

you restore me

from the terrors of interaction.

You never ask for more than I can give.

You know that you’re toxic

to my body.

I wanted to read it after writing a message today which said something like, thankyou so much for wanting to encourage me, but in person that will exacerbate my pain, can you write it? It's a tough patch. I smile as I read this post, knowing that in the years that followed it, there were seasons where my body was better than this, and there will be seasons again. I smile because now more people than ever know that my body shrivels with stimulation, and they love me despite it. 

 

malaise

nota bene 

Not every day is like this. Some easier, some harder. But days have been like this in school, university, years of no occupation, and motherhood. This is cfs in all circumstances.

So I guess we can get through today because we got through other ones. God help me.

Linger. Linger on every bearable moment. Whenever you can be still, just stay an extra second.

Relief. She is hungry. May this feed last forever. The longer she quietly drinks, the longer I can sit here not moving.

Oh no, a nappy. I’m going to get up and change it, I can do this. I’m going to force my dizzy, headachey eyes to look right into hers instead of blurring out on the white wall. Focus takes focus. And if I smile, can she tell that it’s a physical strain? Can she see the love behind the wasted face it’s coming from? I really hope this smile seems normal to her because it’s abnormally hard to produce.

Fed her to sleep, well and truly, transferred her to bed, all is quiet. No strength for different methods. Now I lie here, and if this could last two hours, that would be two hours of not looking after her, and two hours closer to the end of the day. How sad to count down the hours like this, when these days are precious and irreplaceable. Please, please, last two, it’s the make or break.

No, no, no. Don’t wake. Don’t stir poppet, I love you but I don’t think I can do this. I need to lie here longer. Oh help, I have to pick you up, and even though you’re really as a light as a feather and mini for your age, you are like bricks to my arms.

Malaise, is every cell dying everywhere.

It’s not you, you’re not a burden. It’s me. I’m a burden to me. Physical burden to mental me.

Smile. Sing to her. You don’t have to see the world clearly to pick her up and sing. She can’t tell that it’s strained, don’t let that hold you back. Ok, I feel horrendous. I can call Mum, or my sister if it gets impossible. Tell them my body isn’t working. More water. I’ll carry her to get another glass. Is it worth the trip? Ughhh. No water in the waterfilter. Have to carry it to the sink, so dizzy and wasted.

And now to tidy things up. Move one leg, move the other. This is possible. But this is too grinding. Possible does not mean pleasant, this is awful. I don’t feel like existing anymore. If I said that would people think I’m depressed or would they realize my body is just not functional?  

Just exist for the next half hour. Not the next day, surely you know this by now? Better days will come, there is always variety. Too many Acute Fatigue Bertie Bots Every Flavour Days. What a privilege to have a baby despite the illness though. And to have no regrets, to have fed and loved fully despite the pain. But should we have done this? Stop questioning that. She is meant to be, because she’s so incredible, because she came to be. Stop thinking about the future, each day has enough trouble of its own. I’m tired of worrying I can only endure this once in my life. Why can’t dogs count as siblings for real.

Get the most easy filling lunch possible. I feel bad that its leftovers Ben could have taken to work, or we could have had tonight, but no choice. I leave this kitchen with dishes piled high, unrinsed.

Another half hour has passed. Celebrate inside. Yes. Yess. Not crying yet, maybe we can make it till Ben’s return. But I can’t keep dangling toys and picking her up, my body isn’t working. I can’t do that for three hours more, and the sleeps are over, and what on earth am I going to do?

I’m going to load her into the pram. I’m not up to this, I’m really not. Goodness she looks mini and precious in there, I just love her to bits and pieces. Walk slow, if I could get this to last a whole hour, then it would be late afternoon. Come on legs. No, stomach you are not actually nauseous. Ok, maybe you are, but you can’t throw up here. Look, rotunda in the graveyard, I’ll sit here in this morbid place and simulate walking for a bit.

Home now. Dry retch in bathroom. Drink water. Epic time passing, excellent. Was that easier than holding at home? I wonder. This is the last stretch of the day, we are nearly through, can you believe it?

Standing in the front yard waiting for co-parent. Actually, let’s show her flowers. I don’t want to seem crushingly desperate, so I’ll go inside, and wait at the window instead. He must be here in about one minute. Yes, hello, I hear the garage. Ask about his day while subtly handing him cherubina. Lie in coma on the couch, maybe if I do, I’ll have the strength to feed a few more times before bed.

The problem is, she needs to be entertained while dinner is made. I’m not up to cooking, or baby minding. Takeaway or cry, I’m not sure. Maybe tomorrow will be different, will some strength be granted me before the 1:00 am feed, or the 5.30 am feed? I’m not sure. It won’t be like this forever. I just need to lie. Malaise.

bookshelf fire just happens sometimes

Thanks to a stranger on the internet for articulating things so fantastically well. 

going to the doctor when you're chronically ill is wierd

And, thanks for making me ugly laugh so hard that my five month old joined in. She will get accustomed to seeing me laugh and then sob about chronically crappy health.  

the situation I was in before I got myself an earning husband

To have a baby with chronic illness, or not

I think we had this conversation two billion trillion times. Ben squirms when I use nonsensical numbers, but I really need to, for expressive reasons. In my acquaintance of people with the same illness, the majority are not partnered and do not have children. I am privileged to have been in a serious relationship before my illness got serious. However there was one friend with ME/CFS who urged us to have a baby. She was the one who had cleared out every baby item after her firstborn, vowing never to go through it again. Three years later, she bought it all again and welcomed a second baby girl. Despite her encouragement and our longing, the idea of introducing a baby into our just-floating existence was frightening. The possible health cons list was just as long as the pros; it was terribly unclear. People twice my age say they are far too tired to look after new babies; yet my beautiful fifty-year old mum has at least double my energy. I’m on a par with my grandma.

If an idea won’t fade from your mind, it generally needs acting on. So we took the plunge. You’re supposed to do radical and ludicrous things in your youth, and we chose the most risky thing we could conceive.

Having support back stage, that is crucial. A few days before the appointed birth day, Ben got the flu and collapsed twice in the kitchen. This was a huge concern for us, as we knew he wouldn’t be allowed in surgery or Special Care Nursery with the flu. He took time off work, and our parents cooked so many soups and dishes that we were both able to rest and recover. Our lawns were done, twice, our dog cared for beautifully. Mum sat with me for hours on hospital days, and drove me around. We should probably have asked for support earlier in the horror that was my first trimester, but when we did, it was there. When we had our daughter, between our church family and our blood family, Ben didn’t have to cook for over 5 weeks. It was astounding. My private midwife visited and messaged me till I felt confident. There were so many valuable pieces in our support puzzle.

Harder is the lovely tradition of visiting new babies. It’s theoretically really nice. I simultaneously wanted it and couldn’t handle much of it. There is a real irony that you have insufficient energy for visitors at the best of times, and then at the worst of times, surgery and newborn, you have more visitors than ever before. Your gate keeping skills need to be honed before, or rapidly honed during, because otherwise there will be an extra sick, very teary mother. It’s ideal to share new baby cuddles, but when life is not ideal, something’s got to give. I wish more people could have enjoyed her newness but Mr. Baruch was onto something when he said that ‘the ones who mind don’t matter, and the ones who matter don’t mind’.

While I was pregnant, our main concern was how we were going to keep a tiny person cared for at night. We decided that flexibility was our strategy, we would do whatever worked. If we needed to co-sleep, we would do that. If she needed to be formula fed so that our mum’s could do night shifts, we would do that. Our night regime evolved after I developed vertigo. We were the couple who had never spent a night apart since we got married, but we found that if Ben sleeps out with her and brings her in for a feed, I have the strength to care for her during the day. He deals with grunts, re-settling, and checks for actual hunger, so that my role is milk-and-milk-alone. At first he started on the couch, and then we resigned ourselves to the regime and borrowed a mattress. It’s kind of sad, but it’s also kind of awesome that as a team, we have a breastfed baby girl, a mama able to care for her during the day, and a papa young enough to be able to cope with work too.

Would life be easier for me if she were bottle fed? Yes. It’s a hugely personal decision for sick mamas. But as with all decisions, mine came from the journey I have been on, a journey of sickness. I don’t feed in spite of my illness, I feed because of it. I longed to give her the gift of breastmilk. It’s the earliest gift of health that I can bestow, my body has made plenty of it, and so we are prioritising it. I have unresolved feeding pain, but that’s another story.

In the day time, I am grateful for a baby who sleeps. I lie down for all her sleeps, three or so hours a day. If she didn’t sleep and did cry, I would need her grandmas to let me get a daily sleep. But our quiet life, it works best for the two of us. No there aren’t many outings yet, but that’s ok. I’ve been mostly homebound without a baby too, and this is 100% better. When she’s older and drinks less milk, she might go to her grandmother’s houses for plays like her namesake book, ‘Marigold in Grandmother’s House’. She might sleep through too, breastfeed less, and I might start to feel better again. We were given a placid little girl, sparkly, but not fussy* or teary. That’s the best gift you can be given when you’re underpowered.

It has been extremely physically challenging despite flexibility and support, but emotionally, there aren’t words for how grateful we are to have Aurelia in our world. That leap, it hurt like nothing else, but it also took our lives up numerous notches on the joy scale. There is more laughing, singing, goofiness and hugging in our home than ever, groans followed by euphoria, and fulfilled sighs at the end of the day. Worth the risk, and a season (or eight) of extra-ill.

* She was not fussy for the first few months, and then immediately after I penned those words she took up five-month-old extensive grizzling and all day demands, I suppose because she is too grown up and bored for quiet lying and happy bouncing anymore. Sparkly and fussy. 

I couldn't do that

anon.

I grabbed a pair of rubber gloves and took my $100 stockings into the bedroom. I’ve never spent so much money on something so unappealing. Their shade is not like any skin tone I’ve ever seen – it’s not my ivory shade, nor is it tanned, but more like muddied river water. After I saw them, I promised myself that if they were uncomfortable or gross, I didn’t have to wear them. It was ok to back out. This was a trial.

I was determined to get them on without help, and so I began to insert my foot through the miniscule hole which was the ankle section. I sat there yanking and tugging and soon got my foot stuck in the ankle tube, worrying it would lose circulation during this potentially long delay. It looked a lot like a bound Chinese foot stranded in there. By the time my foot made it into the sock part, my hands were sweating in the gloves, making it hard to keep them on.  I took a little break after that victory, and decided that my cardio for the day was done. This was an intense task. Eventually they were hoisted above my stomach button, and I stood up.  

I felt springy. Far from uncomfortable, there was this feeling of being contained, light and strong. It dawned on me that I may never want to take them off. In a split second I had gone from vowing to only wear them on warm days at home, maybe, to coveting this improved vitality for all the days. Who cares about being hot if I feel springy? And what’s a muddied foot or limb in view compared to this functional and surrounded sensation?

Just as I rarely grieve the foods I can’t eat, I realised that I cannot grieve these thick pantyhose, because they bring good. So many times I have heard these words: I don’t know how you can not eat gluten and dairy and sugar. I don’t know how you bear to stay home. I don’t know how you can exercise when you feel so unwell. Maybe soon they’ll ask how I can bear to wear hideous tights.        

I couldn't do that, they say.

It’s so incredibly simple. I make decisions to live as fully and as well as I can. The alternative to each sacrifice is always worse. If you are in enough discomfort, you will seek change in ways you never thought you had the strength for. 

We do things because life is important, and our body is our vessel. 

first do no harm

First do no harm.

This is a latin principle historically taught to physicians. In the past I have been attracted to the gentleness of this phrase, and empowered to refuse treatment which I deem more destructive than beneficial. But it was recently that I decided to adopt it as my favourite maxim.

It was a bad day, a day where the fatigue and pain were severely interrupting my usually-manageable activities. The old record began to whine in my mind, with belligerence. ‘I can’t believe I can’t get anything done, what a waste of existence.’ ‘Just make yourself. You’re lazy which is why you think you’re unwell, and you could get up if you tried harder.’ Long was the day, loud was the disappointment, strong was the discontent. To soothe the pain and the unjust reprimands, I sought comfort in the form of hair pulling. Much later, Ben walked in to a pile of hair, and a rocking, sobbing, sadness.

In the end, I wasn’t as distressed by my sickness as by the way I had handled it. I deeply regretted that I had turned on myself {and my extremely undeserving head} and multiplied my woes.

By providence, my friend sent me a long email filled with love and too much wisdom to write here.

She wrote:

Please extend to yourself the same kindness you extend to me. You will find that you are the most gracious, considerate, strong, interesting and wonderful person you could ever want to meet.

I shudder to use those adjectives for myself, but the first line was startling.

What if, when I was hurting, or disappointed, or anxious, what if I played an empathetic track? 

Opportunity for practice soon presented itself, bien sur, and I was facing a day where I would be alone and mostly couch bound. It was a little strange to extend compassion, and I felt like a positive psychology experiment.

I found myself walking up a long hill, feeling dizzy after many vials of blood had been extracted from me. I noted that it was a great feat to have gotten my blood tests done on such a challenging day, and that I could enjoy tea when I got home. I lay on the couch, and thought: I’m not lazy nor a hypochondriac. No one feeling this way could move, let alone work. I’ll know without a doubt when I’m feeling well, and I’ll do good things that day. I thought about John Milton’s poem, the line, ‘He also serves who only stands and waits.’ I acknowledged that I was doing well with no pain relief.

Late afternoon the sun eventually beat the clouds, so I went to bask in it and celebrate making it through the bulk of the day, with all hair intact, and lack of agitation. Ben walked in the door, and I was doing some plies and fondues in the sunshine. Same headache, same malaise, same lack of achievement as the other day – but this time, there was no trail of destruction. I hadn’t done what I wanted to, but first, I had done no harm. That night, I was UTTERLY content in having just lived through the day.

Why do we kick ourselves when we’re down? First, do no harm. 

found

be sad

unknown

“Be in love with your life. Every detail of it.” – Jack Kerouac

I resent the notion that we should always be happy. I have quotes like the one above pop into my Pinterest feed, and I scoff at them. Forcing happiness and optimism at all times is the surest way I know to be internally sad.

When I sit on the couch, wasted and teary from frustration, I think morbid things. I wish I’d lost a leg or an eye over my strength. I wonder how I am supposed to wake up tomorrow and go on.  

I will always remember the talks we got at my music and dance school.

“If you lose a limb or a finger, what will you do as plan B?”

Trawling the vocation guides, I listlessly decided on psychology or french teaching. As if I would lose a finger. Besides, music was already my plan B after ballet, and I had no intention of letting it slip from my grasp. I really had no interest whatsoever in plan C.

And now I would beg on my knees for plan C because I wound up with plan Z - except I won’t call it a plan, because I never conceived of it. To call ‘Z’ unpleasant is an understatement, because strength is the essential ingredient to almost everything. Even to sleep. The caged torment of being mentally sound but physically unable sometimes overwhelms me.

The reverse is even more challenging.

I wonder how to come to terms with Z?

The only way I know to deal with Z, is to acknowledge it and grieve. I let my cheeks get slippery wet without accusing myself of being sorry for myself. I cry because it’s the only way I can expel pain. Once I’ve wrung it out, I am released from exasperation. It is my favourite anti-depressant to date; side effect of puffy eyes is hardly worth mentioning.

Afterwards, I can pan out and see Z as a part of my life. It can only suffocate all that I think and do, if I allow it to. I zoom out and I see that right beside Z is my hilarious dog, my handsome husband, my urge to create left untouched, the discontent of man in every single situation, and the privilege it is to walk on earth for however many days I’m given. There’s something free about being empty and helpless, so openly so that I have to admit it. More moments seem beautiful because I’m less fixated on plan A, all consuming plan A.

The only way I can enjoy being alive, is to feel loss and sadness. I am most real and at peace when I depart from ‘got it together and loves life’ stoicism.

 My love of this Ecclesiastes quote grows with time,

“For everything there is a season and a time for ever matter under heaven.

...a time to weep, and a time to laugh;

a time to mourn, and a time to dance.”

Chapter 4:3

social lights and darks

Melanie De Fazio

I’ve admitted before that when I get invited out for coffee, for tea, for a dinner, party or gathering, one part of my heart sinks. 

I am in the bizarre category of being too unwell for the very activities which rejuvenate most people and bring them life balance. Unforgettable is my first ‘holiday’ with this illness. The very premise of a holiday is to leave your regular work behind and rest your body. I swiftly learned that my regular work is dwelling in my own body, and that most parts of going on holiday added to my suffering: travelling by plane or car, strange bed, going to see the sights, eating out, expectation of having fun resulting in guilt at not having any fun at all.

Don’t even mention holidays-to-visit-friends. How does that even work?

Sometimes I sit in my lounge and feel like a miserable social outcast, when I have an invitation in my hand. The pain has so marred what are supposed to be the happiest times.

And right alongside my desire to minimise my pain, is my sense that relationships are one of the most beautiful and important aspects of being human. I realise that sharing times with people is my work not my leisure. But am I not insanely privileged to be alive to be able to do that, pain or no pain?

Enter my beautiful friend’s upcoming wedding. I was all mentally and physically prepared for the pain-work aspect of the wedding. I cleaned up the house and Ben stocked the fridge so that on my return, I could lie until the nastiness subsided. I was all psyched up to live second by second, and in my bag was a stash of white pills for when I needed their powers. My praying friends were praying.

I woke on the day with zero pain, despite almost no sleep and the long journey the day before. The surging adrenalin gave me a crisp lively feeling. Intoxicating. I wondered if it would wear off before the ceremony, or just after. Drenched in warm sunshine outside the church, I was able to feel unadulterated joy and excitement. I stood without dizziness through the ceremony, and sang without faintness. At the photos, I still hadn’t reached for the pills or longed to lie down, and the day was passing in a happy blurr. I wondered why. Why am I functioning? I don’t do functioning.

In the evening, I began to fade but not to such a degree that I had to go out or be carried to the car. As we drove home, me in a delirious state of bliss, I wasn't sure whether I was going to pay severely for the day, or whether it truly had been a gift.

In the end, it was a gift. Unexpected and sweet, to remind me of wellness and freedom. On returning home, I didn’t have to sleep my days away or sip soups and cry. No wonder my friends love to spend time with others, when there is so much gain, and so little cost. I have this warm feeling that I am the same as the rest of mankind when my body works. And when it doesn’t function, I am the same as all the beautiful people who strive for a meaningful life through pain. 

But right now, I'm just happy. 

the way he made me feel

anon.

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. 

a healthy weight debate

Because the story of trying to gain weight is grossly under told in society, I will tell it. Some people wish that they had this problem, which is rather naive, and many mistakenly believe I eat delicate amounts which is why I look small. Others think that putting on weight is nowhere near as challenging as losing it, and a growing number like to speak about 'skinny ones' with lashings of the judgement they hate being applied to their larger bodies.

An acquaintance coming to terms with her curves on social media wrote, “Let’s stop comparing ourselves to stick thin models, there is nothing sexy or attractive about skin and bone.”

Let’s stop judging other body types while we strive to care for our own bodies. Reverse sizeism is no solution at all.

Because of the terribly over-discussed nature of weight in our society, particularly for women, I have to fight to think of weight only in terms of health.  

I was slim before I got sick, but the year that I got sick my size diminished. That was the very least of my problems, so I didn’t even register it – apart from finding that my only formal dress needed to be pegged at the back for Year 12 photos, and two doctors wanting to treat me for Anorexia Nervosa instead of Myalgic Encephalomyeltis/Chronic Fatigue Syndrome. One doctor believed me when I showed him my fine bones and told him about my fast-metabolism family. The other doctor was unrelentingly suspicious about my petite frame, while I tried to explain that the only way I could function while feeling this ill was to eat ravenously all day. I ate, incessantly – and every drop of food was burned at a ferocious rate. I spent my teenage years eating far more than my same aged peers and looking far smaller. I forgot to mention to the doctor that when I was in the womb the doctors wondered if I was developing correctly because I was tiny-framed. I also forgot to mention that if he talked about weight instead of fatigue, I would leave the practice. Which I soon did.

It was about this time that I began to intensely dislike the obsession with BMI’s and numbers on the scales. Surely the medical profession had discovered diversity, and could move on from ‘you’re too skinny,’ to ‘you have a serious illness, let’s focus on the big stuff.’ A few years earlier I had decided that being told I was ‘skinny’ was akin to being told one was ‘fat’. If fat is outlawed terminology, skinny ought to be too. – and I have thought of myself as slim ever since. And yes, I do have curves, not as pronounced as some but undeniably feminine. While we’re here, no I am not ‘Asian sized’. I am actually Caucasian sized. Caucasians come in a range of sizes, and yes you should stock size 6, and below, because we like to wear garments too. You really should stock extra of ours because we need more garments to keep warm.  

Last year I was feeling particularly demoralised by the frequency and duration of viruses I had, making winter a hellish time. I realised that going off fructose had only one down-side: losing more weight. Low weight is associated with a weak immune system.

How do you gain weight when you burn it like kindling, feel most well off fructose, dairy and gluten, and have to exercise to manage your POTS?

First of all, you ignore all the fat-is-bad-for-you messages you ever heard. And then you begin eating all things healthy which are also solid, stodgy, fatty, oily and wonderful. For me, the biggest change had to be lunch time, as I can’t fit in much more at breakfast, dinner and dessert time – I have introduced potatoes, brown rice, olive oil, eggs, coconut cream {by the can}, lentils, meat and so on. As wonderful as this sounds, I struggle with the energy to make this food at lunch time, and if I find myself hungry {and exhausted} at 3 o’clock, I barely have the motivation to make more stodge. Always being full is a full time job if your body works like mine. A simple rice cracker or nut binge does not do the trick.

At first I felt like I was wasting money and time because for all I ate there was no gain. Then I got a virus and lost even more. I was not interested in making this much food if my body was just going to burn it all.

More recently there have been results, and I now sit two kilograms heavier. I am elated to see gain for the first time in years! The initial goal is to reach my pre-illness weight, but perhaps I will splash out and get myself some snugly winter insulation. Because I don’t want to become fixated on numbers, I weigh myself once a fortnight. I have no idea how calories work, and prefer the antiquated method of eating more of certain things.

While my face lights up when I step on the gym scales to see my progress, there are more conflicted feelings when I go home. Although I could gain 10 kilograms and hit an average BMI, I catch stray thoughts of fear. I don’t know anyone who is trying to put on weight, and I wonder if the extra padding is attractive if everyone else is getting rid of it and ogling pictures of thin women? My stomach used to look ‘ideal’ and I feel conflicted about growing out of jeans. Is all the hate about skinny bodies envy, or is it true that I look unwomanly?

And then slap, I remember that this has nothing to do with what strangers or friends think about how I look. I would rather look enormous and feel well than look enviably thin and feel wasted. This is about my health, about helping to fuel my body so it is in the prime place to fight cold days, viruses, and stressful times. Why does weight have to be all about looks? I am a strong proponent of aesthetics, but practicalities must trump on this one.  

muttering in public

Today I was sitting in the car with Wolfgang my pup, our windows all the way down to prevent us from melting. I saw a six foot man with a protruding tummy coming down the street. He was wearing a polo shirt tucked thoroughly into faded navy track pants. The trackpants were pulled almost up to his chest, with the cords hanging out. I could see that he was talking to himself, and as he passed my window I caught what he was saying.

“My disability.”

Then there was silence. A few seconds later,

“My disability.”

Silence.

I just sat there feeling stunned and sad. I wished he had been singing to himself, or muttering about the beautiful weather – but he was pondering his and society’s perception of himself. I wanted to go and tell him that he was great just as he was, that he didn’t need to sweat it. I wished he didn’t even know he had a disability, that he could accept himself without a label.

I found it hard to forget him, hard to see him so internally disturbed by this view of himself. Then it was dawned on me that I was just like him. In my head, a hundred times a day I mutter,

“My disability.”

I say it when I wake up and face the day at home, and when I get weak cleaning the bathroom, when someone asks me what I do, and when I send another message saying ‘no’ or ‘less’.

I’m painfully acutely aware that I am abnormal, and that people aren’t into abnormal. I absolutely dread that moment of discovery in conversation: that I am disabled.

I wished most for the man not that he was able bodied {I do wish that too}, but that he could walk down the street unconcerned by difference or disability. I just wanted him to embrace being him without all the fear. I wish that for myself. I see all the ‘can'ts’ and ‘no longers’ and ‘abnormals’ and the thought that my life is less valuable than another’s is like a load of lead. Just imagine if the whole motley bunch of us mostly ailed humans stopped adding the requirement of seeming ‘normal’ and simulating ‘ideal’ to our diverse issues.

I think if I lived within the boundaries which allow me to function somewhat pain free, and let go of all the “Help, I don’t have a career!  Help, I’m a social failure!  Help, people must judge me because I can’t do things!” I’d stand a chance at less misery, more joy, more living. I want to live the life that I lead at peace with the path I am on. Enough with the muttering, more of the appreciating, loving, giving and receiving grace.   

a day in the life of me

I often get asked how I spend my days at home, sans work or infants. This is an example of a pretty good day. Pretty good days come when I follow this simple routine for weeks on end, without too many outings/energy-using occasions.

I spend my days going slow, as slow as my eighty year old grandma. If I go slowly and gently, I can exist with minimal pain and actually improve a little. In the long run, I get can give and enjoy more by going this pace, because it fosters stability. I farewell the run, crash, run, crash cycle.

8.30 – I start to surface after Ben has kissed me goodbye for work. I just grunt ‘goodbye’ {this could also be interpreted by him as ‘I love you’} because I like to stay in my sleepy zone. If I wake up early, I have a guaranteed sick day.

9:00 – I slowly crawl out of bed, and start oil pulling. I swish a tablespoon of coconut oil around in my mouth to pull from it toxins which compromise my weak teeth and immune system. After 20 minutes of swishing, I go and brush my teeth. I detest the taste of toothpaste while eating breakfast, but oh well.

9:30 – I make my breakfast, and it is exactly the same every single day. Routine is a lifeline for me.

corn puffs

rice puffs

shredded coconut

chia seeds

linseed meal

nuts

rice milk

then I drink a large glass of luke warm water to keep my body temperature stable, and swallow about twenty tablets.

10:00 – Now I’m heading for a shower, and there is no rushing and not enough concern for water conservation. My dad would die if he knew I used heat lamps in the summer too. After I’m dressed and mascared, I celebrate my victory with a little sit down and no champagne.

10.30 – It’s time to deal with my postural orthostatic tachycardia syndrome {POTS}. A few days without exercise and my head goes black every time I try to walk. I drive to the gym – and depending on health, this is hazardous as my eyes struggle to focus and prefer to stay relaxed and blurry. I have a program of 20 minutes of cardio on the bike, treadmill, or cross trainer, and 10 minutes of stretching. I leave my fellows sweating it out with my speedy workout, and I feel the best I will feel all day while I’m exercising. I feel alive, but it’s worn off by the time I’m back in the car.

11:30 – I’ve arrived home and it’s time to sit down, sometimes with tea and some sugar/dairy/gluten free treat. Then lunch, where I try to stack on the carbs and protein because my body uses energy the same way I use shower water.

The afternoon is less structured. If I’m still functioning, I’ll do a couple of jobs. Maybe I’ll clean the bathroom, or fold washing, write an email, make an appointment, bath the dog. If I do too much, I get wiped out on the couch with a headache and dizziness.

I need to be restful, so I’ll also read books, make things, water my garden, and do all in my power not to fall asleep. Falling asleep sometimes happens accidentally, but it also brings on insomnia, so I have to very strict with myself.

5:15 – Ben arrives home from work! Wolfie the cavoodle goes psycho with yelping and jumping, because he knows he’s about to get a walk.  We drive to the waterfront or botanical gardens for some nature and catch up time. Then Ben cooks dinner or heats up left overs {he makes incredible food!} and I make a salad, or rest if I need to.  

The evening is eating dinner, reading together, and hopping into bed around 9.30. Ben usually picks me up off the couch and carries me to bed. Then I rest up for a few minutes, hop out and brush my teeth.

The day is done! My favourite days of all are these quiet home ones, where I can be so gentle as to keep the pain and fatigue at bay. Tiring days which escalate into accompanying symptoms are the ones where I catch up with someone, have to go to an appointment, have to go to the shops....those days usually aren’t ‘pretty good days’.

Thoughtful people wonder if going out for coffee with friends might help with boredom, not realising that this ‘boredom’ is the key to feeling ok. I have grown to be content in my own company and the silence of my home, and my body thrives on peace. Others envy my idyllic housewife life. And if I felt well, and could care for my home and see friends, it would be a most luxurious and lazy life. But to me this is a full day. Just as one person’s limit is a 40 hour work week, mine is a shower, gym and a job.