chronic milk making

While I was pregnant, women who had raised babies themselves, and knew how under powered I was at the best of times, they must have felt a serious twinge of fear on my behalf. I remember clearly conversations which went like this,

“And don’t feel bad if you can’t breastfeed, because your health is more important. It’s ok to give formula. And colostrum {milk with extra super powers in the first couple of days} is amazing all by itself, even if you do a couple of days that will be great. ”

And I would say, with my lips, “Yeah, I will let that go if I’m really not well. I won’t beat myself up.”

But my heart was not in sync with my lips. Not remotely. I didn’t want to sound like the naïve new mum I was, spurting forth her untried opinions, so I kept my opinion to myself. But my opinion was that I would rather give her the best immune start to life and suffer myself for a year. Breastfeeding cannot prevent a baby from getting a chronic illness, but it’s the first gift of health I could bestow on her, and there has never been a gift I’ve wanted to give more because I’ve never loved a girl more.

I knew that even my well mum had been run down and needed daily sleeps whilst sustaining another life with her milk, so while determined, I was not expecting an easy ride.

A couple of weeks before she was born I started to express colostrum drop by drop, on the advice of my private midwife, because I might be away from her for the first hours, and because it’s a powerfully healthy thing for a newborn. I arrived at the hospital on the day of her birth with ten filled syringes to be put in the fridge, to the surprise of the staff who don’t usually see or encourage women to do this prenatally. I thought my hours of work and patience extracting each milliliter might last a while – so I was partly horrified and partly chuffed when I heard the doctor had given her all ten syringes at once, as soon as she arrived in Special Care. I had been her first medicine, even though I was still lying on the operating table, and that was worth it.

I was extremely blessed to have good supply, but I soon had to call upon my iron determination to feed because after a few weeks of decent times, things got bad and stayed bad for about four months.

In medical speak, I had recurrent white spot (sounds cute, feels like hell), recurrent infections (this should not have surprised me, infections are my specialty), vasospasm on one side, mastitis, and regular blocked ducts.

Four months feels more like four years when you’re breastfeeding, because young babies feed around the clock. So frequently that the scabs would just dry out a bit from the last feed, enough to make the next milk extraction excruciating, but not even close to healing. Then I would feed, the scab would be re-opened, and the cycle repeated. It was like being cut open with a knife regularly without anesthetic, day and night.  I had to majorly psyche myself up before her feeds, really prepare myself. I tried everything to ease the pain; every preparatory step before bringing her to drink - but from the moment of latch, I would frantically pound the floor with my foot and moan. I would try to breathe, but it was more effective to beat and groan, to try and stifle the murderous sensation with other sensations.

Ben wanted to be with me in the pain, he wanted to comfort me. But I was in a fiery hell of sensation, and would have been borderline violent if he tried to put a comforting arm around me. Maybe not even borderline.

I would say through gritted teeth after preparing myself to feed her,

"Ok. I'm about to do it. I'm getting ready. Can you just sit in that chair over there. And pray. And don't talk to me!"

And he would sit there silently, and watch me cry and groan. I needed him there rather than pottering around painlessly in the kitchen. I needed to know that he was sharing in my pain as I fed our girl, even though he couldn't take an ounce of it away. 

Sometimes I would express milk instead because I needed to let more healing occur and I emotionally could not handle another strong suck. But as she grew older I couldn't express enough for her whole feed and had to supplement it with my freezer supply, and it wasn't an effective emptying method so I would soon get blocked ducts and be forced back to letting her latch. 

One day a nurse taking my swab told me that she doubted I would be able to heal while continuing to breastfeed. This woman who was not a feeding expert and ought not to have shared her personal opinion, she preyed upon my greatest fear. 

I went home and talked to my Mum. My own mum had been damaged, and kept feeding, and healed. Then I talked to my friend, who had healed while still breastfeeding. Next my Lactation Consultant, who said that every person she knew who really really persevered had gotten through. And Ben, he was going to sit quietly in that armchair, and not make a sound.

I could not see for the life of me how healing could occur while each feed undid the scabbing. It seemed impossible to me. So I left that hope and belief to people who had been there themselves, and set to work on the only path possible for discomfort. 

Right now, present moment.

I focussed on getting through one feed, however bad. 

Then celebrating. Walking around the house feeling the light delicious emotion of relief. 

One hour later, relief giving way to dread. 'Can't go through that again,' circling in my head. 

Baby crying, obligation reigning, going to that awful place again. 

And that was how it passed. It wasn't a calm, breathing, full of hope affair. There was no bonding with her, no staring into her blue eyes with a smile. I was channeling psycho, moaning, arm flapping, mega-tense mother to her while she drank. I was gritting my teeth and only half believing that deeply ingrained phrase that the only way out was through.

Through I went, as Ben quietly watched and acknowledged and other people voiced the hope I couldn't feel. I couldn't write about it because I was submerged.

Concurrently, vertigo had entered my life at two weeks post partum. Vertigo took from me one of the senses I had most taken for granted, and assaulted my will to live. I didn’t even know that looking out the window and seeing a stable picture was one of my favourite things till it was gone. I didn’t realise that lying in bed with your eyes closed and feeling completely still, that is of the life’s greatest luxuries. Life was simply undesirable when there was no peace; a constant moving haziness which made me feel ungrounded and woebegone. 

At the time we didn’t know if vertigo was due to breastfeeding, or being up in the night. I assumed it was both, a muddy combination of two things that my body detested.

Occassionally I wondered if I weaned, would my nemesis vertigo leave? And would that be a wise decision, to be a more well person, wife and mother? If someone could have promised me that weaning would take the vertigo away, I may have weaned. But because I didn’t know, I did not want to wean and receive the rude shock that I still had vertigo, and my milk (and baby whispering powers) had dried up.

After four or five months, feeding became pain free. It happened gradually. At first there would be a day with no infection, no white spot, no blocked ducts, and then after the next bout of trouble I’d get a longer pain-free stint. It happened just as I had stoically and tragically realised that I might have to feed in agony for a whole year. I had lost hope that my pains could ever be ephemeral. I knew few women who had experienced problems for so many months, so I assumed I was stuck in this forever. I thought darkly that it was classic me to have a plethora of issues and chronic pain. I also avoided talking widely about my issues because I didn’t enjoy being told that it was ok to give up – I wanted to be encouraged to persevere.

Now the vertigo is like the tide going out at the beach. A lot of the time it is receding, but sometimes a wave lands high on the shore and I wonder whether the tide is actually going out after all.

It is always precipitated by extra use of energy, or sickness, or the baby waking frequently at night.

I still breastfeed regularly during the day, and once or twice at night – similar to the early days, and so I can finally say for sure that breastfeeding was not the single reason for the vertigo. It can’t have been soley night waking either, because I have not slept through the night for twelve months straight, yet the vertigo continues to ebb away.

I imagine it was many ingredients all smooshed into one eruptive mound: being up for long periods at night, producing so much extra milk initially, recovering from major surgery, the immense energy given to adjusting to a completely new life of work, and my body restoring itself after carrying a baby. 

The fight to feed has been rewarded many times over, with this ability which makes mothering easier for me as an unwell person. I continue to be in remission from POTS, a result of pregnancy and breastfeeding; I take hot baths without fainting and stand without blacking out.

I groggily feed her whilst still lying down myself for two minutes in the night, and she falls back asleep. I leave the house with nothing in my bag for her. I calm her tears and she pops off with a happy smile on her face. I read how good this milk is for her, I read that I receive an oxytocin hit every time I feed her. I hear people talk about how it’s odd to feed a baby who can walk or talk, and again I quietly hold my opinion inside. I fought to give her milk and I’m not about to fight to end her enjoyment of it. If she can verbalise how much she loves it, all the better. For now I am perfectly content with the spontaneous claps she gave me last week as she drank. 

essence of sad

Have you been so sick for so many years, that you lack the will to go on?

They say health is the most important thing, cheerfully they pronounce it, to inspire their gratefulness, 

to wash away their great unhappiness.

But you don't have health. 

You don't have well. 

They say friends too, they are better than career you know. 

Career, it went, but friends you have. 

You have friends you rarely see,

friends you hold on to, but always fob off. 

You love them from your couch, but it isnt enough.

You don't cook for them, ever, and you're always writing to say 

'less than an hour, but I love you ok'. 

I'd love you better if I could. 

My mind loves you. I swear. 

They say happiness inside, that's up there too. 

Peace for the ride.

And you have that one. But with essense of sad.

You want it unconditionally. 

In the sore, crawling, lonely, drought.

But it morphed into sad, behind your back, so now you feel bad. 

That you're sad. 

Sick bad, and then guilt bad. 

And lonely bad, and too-long bad,

And hermit, outcast, worthless, cold,

too-much, and can't-go-on bad. 

Till the sun pops out. 

It kisses you and hugs you and shouts:

It's a beautiful day to be alive.

Alive. 

You have alive! 

And alive is meant to be here,

and meant to be here is purpose,

and purpose is go on. 

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.

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.

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. 

high on life and blood

Happy endorphins float through my body on and off all day and night.

This sense of joyful mental well-being has never been as consistent in my life as the last few months.  Even though I projectile vomited my breakfast this morning, even though I can’t sleep through the night, even though I grieve on the couch with Ben when we mentally prepare to go to the Royal Women’s for brain checkups.

It’s a three stranded cord, this joy.

Being on the brink of something new, after the longest, dreariest, waiting season of my life.

The magic of feeling a tiny human move within me all day long.

And something most people usually have: blood flowing.

These years with Postural Orthostatic Tachycardia Syndrome have been faint, weak, powerless. I’ve been living half strength, like a watery apology of a cup of hot chocolate. Full bodied, full creamed, or shall I write normal....I lost the memory of what that felt like. I knew my autonomic system was dysfunctional, I could rattle off my wordy diagnosis, but I couldn’t recall how I was supposed to feel. I wondered sometimes if I was a hypochondriac. How much of my inability to do things was physical, and how much was mental? I wondered if my aversion to hanging out the washing and cleaning the shower was more laziness than chronically low blood pressure. I wondered if my default position of asking Ben to bring something to the couch for me was a deep growing slothfulness.

And then my blood volume increased in the second trimester, because I was growing a baby. Standing up, the most taken for granted of abilities, became easy. There is no blackness, no crouching to the ground as I wait for blood to reach my head. I lift my arms up to the washing line, and I don’t feel like I am ebbing away. I took my first bath in four years, and I didn’t start to pass out, so I started to take them multiple times a week, for the joy of it. I don’t do intense cardio, and yet I can still stand and walk. I go and buy the groceries for the first time in years, because I can stand in a queue, I can stand in fluorescent lights. The blood doesn’t drain from my organs, leaving me a quickly wasting shell.

The lady at the checkout saw the load I was carrying, and presumably my baby bump, and said, “I’m sorry, I didn’t see you standing there with all that stuff. You can just put in on the counter while you wait.” I am grateful for the kindness of strangers to me while I’m pregnant, but the cruelty of invisible illness is acute. The bump I have out the front, which induces the compassion of society, it is no trouble to me. I have been far far sicker while not pregnant; while standing there slim and normal to the eye, no offers of seats or help. Because no one can tell that my blood had settled in my legs and my head is light. No one can see that I feel like lukewarm and woefully weak tea, that I am silently disabled and there is nothing I can do about it.

I want to bottle this blood, to feel like this always. Blood is a life spring, invisible and essential. I don’t know how long it will last after I give birth, or when I will return to my watery, strengthless, invisible reality. I don’t want to go back there, to live grey and drained. I don’t have the words to describe the bleakness of the normality I am on vacation from. All I can think is, if you can stand unsupported and not crumple like a paper bag, life is sweeter than you know.

For now, that is me. The life I’m growing inside me is also giving me life. 

So much icing on the cake. 

my flute, the closet, and i

found

I’ve been spending time in the walk-in-robe this week.

When I was a young musician, I selected the room with the most echoes and delighted in the sound of my playing which filled every nook and cranny. The reverberance of our wooden floored home covered my flaws, and even a cracked note sung out with beautiful deception.

My first flute lesson at the VCA was conducted in my teacher’s brick office. Not only was it carpeted, but he had added panels of foam and carpet to the walls to dull the sound. There was nowhere for the sound to bounce and rebound. When I played a note, it stopped dead at the end of my lip plate – even my best notes sounded woeful, brittle, and a far cry from the sonority I enjoyed at home. It was all cardboard and no angels, and that was a shock. I was and am terrified of flute lessons, and the combination of nerves and a damp room made for humbling times. Humbling and sometimes tearful times.

I began to realise that I would best improve my sound by playing in the rooms which showed every crack, waver, and weakness. I learnt that to sound beautiful in a concert space, there must be many ugly hours in a damp room smoothing out every angle of the note.

This is why I have selected the closet for my practice space. I have a tall stool in my cubby, and lean my back against the shelves of clothes with despicable flute posture. Technically there is no reason for me not to play in my wet lounge room, to indulge in the sound now that I am no longer playing seriously. But I am a creature of habit and conviction, and I don’t want the lies of my lounge.

Our dog Wolfgang is extraordinarily musical in the howling way, and perhaps we shouldn’t have named him after such a prolific composer. His over powering accompaniment to even my tone exercises is another motivation to hide amongst my clothes in the dingy wardrobe.

This week I pulled my pure silver flute from its case, and in my dead nook, played some cardboard notes. I’d been asked to play Christmas Carols in Sunday’s service, and this required my lip muscles to remember. I invariably choose Paganini’s 24 Caprices for practice, and long notes. On Thursday night I headed for the two hour rehearsal and blew out some Silent Night.

The muscles in my shoulders and neck began to ache early in the rehearsal. They only ever began to kick up a fuss when I got chronic fatigue syndrome. They ache right up into my head, and produce this dull endless headache on the right side. When I came home, I got my heat pack, and Ben gave me a tough massage, and applied Chinese Medicine heat patches. The next day, the pain is established and unrelenting. There will be more massages, and more heat patches, and then there will be the actual service which will flare up the discomfort even more. And all the while there is a never ending headache.

I look at my flute, and I hear my Paganini, and I want to play for hours. My love has not faded, it cannot fade.

Ten minutes is enough to set my muscles into pain. My love hasn’t faded, but my body has rejected this occupation. I feel deep emotions in my practice room, whenever I pick up my instrument, as I try to find the peace in my skills slipping away from me. As I try to understand the purpose that those years of practice played in my life.

I think about the idea that it isn’t so much a flute, but a life tool which taught me and developed me. It cannot be lost to me, when it shaped me. Perhaps it was the thing that taught me that slow, often depressing plodding is the only and best way forward. From dull repetition and dry days can come the most beautiful things.  

a confusing time of year

found

The complaints are flying off people’s tongues, that they have social events weekends in a row, that parking is nonexistent and roads are clogged, that swarms of humans are inhabiting the shops, and that there is so-much-to-do. In the same breath a person will curse Christmas busyness, and invite you to a break up party.

It’s a confusing time. I’m not against break up parties necessarily, I just feel the irony.

We are all miserable yet we all perpetuate the madness.  Everything that is done at this time of year is technically voluntary, although this doesn’t feel like the case when tradition is at play. We moan under the strain of our rat race society, but how it will it change when we go along with it year after year?

I have developed categories in my mind, so that I can decipher where to spend my limited health. In the first categories are things like showering, eating, house cleaning, joyful activity and close friendship. In the later categories are things I rarely have the health for, like hospitality, social events, baking, cleaning the car, making the bed.

Christmas hype is in my last category, Category 4. I am actually happy for the ones who enjoy every event and shopping trip, but I don’t know many of them. Mostly I hear from the ones who don’t enjoy it, but do it all the same. I try to do some of it, and struggle with it, and end up feeling like the Grinch.

I am not a true Grinch. I love going back to the story of Jesus birth, feasting with my family, and the traditions, carols, trees, lights. I just don’t like drowning, and watching other people drown on this leaky boat that we made.

If well people are flailing, then unwell people are drowning. If we don’t usually have the strength for social events on top of our normal week, then we are suffering when we attend, or feeling the pain that is not fitting in when we decline. If we stay far from the mall’s florescent lights and chemical intensity usually, then the sheer number of gifts to buy is overwhelming. If we can’t stand for long in the heat without fainting, we certainly can’t sing carols.

Life is a challenge usually + expectations increase = human being in need of a desert island. This is me.

Like most things in life, it’s not as simple as saying ‘no’ to every event, ditching the Christmas shopping and not taking the car. It’s a balance of trying to nurture my weary body but keep in step with the people I live with. In Alexander Technique, there is an insightful concept called ‘End Gaining.’ The idea is that we aim for an end result, and we will do it at any cost. We do damage on our way there. I think that is our society in a nutshell. And in the aptly named Silly Season, we fulfil every tradition and end of year party requirement, and we straggle towards the first day of the New Year, utterly spent and probably no happier than if we’d lived gently, on a smaller scale.

Happy Christmas.

No, I really mean it. :-) And I’m trying to navigate it such that mine is happy too.

   

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. 

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? 

  

say nice things

found

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." 

Plato

"Rejoice with those who rejoice. Weep with those who weep." 

Romans 12;15

an impractical plan to avoid death

If you read my blog regularly you will know that I only really cover two topics:

-         -    being sick

-         -    being sick of moving house

And so this post will cover these themes in detail, because I’m sick and we’re moving house again and I’m sick of moving house and moving house makes me sick.

The realestate agent told us last week that we have to vacate, and to say that I took the news well would be untrue. I was a neurotic psychotic mess, crying with despair one minute and laughing uncontrollably the next. I said to Ben that this is what I will be like when I am pregnant, for nine whole months. It was dark, but I think he looked frightened.

Last time I felt like I was going to die. I know that sounds melodramatic, but illness is a common pre-death state and one never knows if one’s lifeless body will revive. As we packed our dirty mop and dirty dog into the car ready for the four hour drive to our new home I started to get stabbing pains in my head. They were ‘is-this-an-aneurism?’ pains, and we wondered if this was a hospital emergency. Mercifully they didn’t persist for as many months as the severe malaise, and I didn’t die.

Moving house and chronic illness are a toxic combination. This particular life event has a 100% record for undoing my health progress significantly. Three doses of this in one calendar year is not recommended.

Two moves ago, Ben had this great impractical plan to send me away while he moved house. I rejected this idea instantly, on two grounds.

1. He needed me.
2. I didn’t want others to have to help us if I wasn’t pulling my weight.

One move ago, Ben suggested his impractical plan again. I rejected it because he needed me as we were living in a remote town with few friends.

This time, Ben suggested his plan again and I have gratefully agreed to it.

I am either getting less conscientious, less proud, or more fearful of relapse. After psychoanalysing myself, I feel it’s a muddy mixture of all three.

It’s a bit of a social norm and pride issue, the whole being- there-to-move-your-own-house thing. I used to think it was an outrageous idea to ask other people to move house for me when I was ‘perfectly’ capable. All of next month’s adrenalin wildly gushes to my aid on moving day enabling me to fool even myself of my suitability for the job. But once I have collapsed into bed it is difficult to depart it anytime soon.

I still have to hunt, inspect, apply, pack, and clean beforehand, but my body seems more approving of quiet regular efforts than short sharp ejaculations.

At this point I am no longer hysterical, which is a relief for my small family. Wolfie kept stealing wet tissues and eating them, and he would have become constipated had my anguish persisted. I feel what I think is peace and acceptance, but it could be numbness. I have just discovered that looking at deathly cute baby animals has great emotional benefits, and I feel quite a connection to this kitten.  

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