unexpected

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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. 

not to be pitied

from here, via pinterest

"Sometimes I feel like we are the lucky ones."
We lie in bed before he slips off to spend the night tending to our offspring.
"I think that too."

He had just applied to drop back to part time work for six months. At first I was dark and brooding over it, the fact that ill health was robbing us of societal normality once again.
Us, not just me. That made it even worse.
It passed, like an angry cloud, when I saw the sparkle in his eye.

We have thought for years, there is a significant upside to living in the slow lane, keeping life a gentle pain-managing whisper. We have many an hour on our couch* becoming closer than we ever imagined, more united and delighted with our companionship, more than we could have if my body roared all day and into the night. It trickles down into the next generation too, time and ensuing fondness, which exists away from the hurry and scurry.

Sometimes the miserable path where you get stabbed and almost beheaded by an onslaught of low lying branches, has magical foliage not found on other paths. We get time and closeness.

Not a creative career, not as much money, not many pain-free days, but something so lush. '

* sans tv, is the key

i want to be the mother

Motherhood is taking the most vulnerable little person under you wing, and keeping it safe and fed until it’s ready to venture forth. It’s giving and giving and giving, when you long to be admitted into the hospital and nursed yourself. For someone who has struggled for many years just to shower and feed herself, it’s outrageous to turn around and give my sparse feathers up to a scrap of babe. I’m shivering, wanting to be wrapped up, but giving that blanket away. I sometimes groan, ‘I want to be the baby’. I get occasional bouts of jealousy. My friend has abbreviated it to IWBB, for ease of use in messaging {also known as mother’s group for the sick}. Who wouldn’t want to be fed, hugged, bathed, carried and gently popped to bed on repeat? That’s all any sickie ever wanted.

Apart from getting better.

But really, actually, not very deep down, I want to be the mother. IWBM. It’s painful yes, but strangely cathartic. I am the carer, for once. I get to love on her the way I want to be loved when I am a vulnerable inhabitant of a painful body. When I fold my arms tightly around her, I am stronger than my illness because my heart is acting. My heart is what motivates my aching arms to respond to her cries for me, and bundle her up. I like that there is more to me than pain and disability. There is fierce love. Sometimes the two wrestle it out, and the pain punches my heart and tells it that it is stronger and I can’t give anymore. I can’t give with vertigo, I can’t give with fatigue. But it underestimates the heart. I haven’t had to grapple with parenting books and styles. It’s instinctual, and it has been shaped by what I have learned through my walls being broken down and becoming weak.

It’s gentle. There is enough life ahead of her brimming with disappointment, raised levels of stress, tears. I will nurture her like she will only be an innocent baby once. Ben and I mock parenting labels, but then go ahead and name our style ‘low cortisol parenting’. Or shall we paraphrase it with this sleek version: ‘Actively minimising adrenal stress in infants because life gets hard fast parenting.'

As she grows she will learn that her mama hurts, that every family is a bit different, that her well papa struggles, that not every smiling face is feeling fine. She will find that life is messy, imperfect, uncontrollable, and at times downright miserable. But the answer to the sadness is love coming vertically from above, and horizontally from us. And it’s tender. It lessens pain; it keeps me soft instead of bitter. It lets me give when I’m hurting. It’s the reason that I want to be the mother. 

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.