how to hurt a tiny bit less

Bubbly relief, my head has been still for three days after forty difficult ones. Life with the ability to move my eyes is very sweet. I can eat a whole meal because I'm not swaying from fork movement, and nicest of all, I can bend down my head to kiss Aurelia with ease at any time. My flighty little creature was nigh impossible to cheerfully care for when each movement was torture to me.
The hundred eye movements that occur in a few seconds were leaving me giddily exhausted and really thoroughly miserable, but now I am grounded again. For now at least.

The last month of vertigo and the onset of cold weather has forced me to open my pain management tool kit.

When I became an adult, the variety who is ill most of the time, I didn't have any tools, bar going for a walk when I wanted to scream. I had not the foggiest idea of how to deal with discomfort or live with compassion towards my body. I felt compelled to push through, and not deviate away from an impeccable attendance record and relentless work ethic. Sometimes I couldn't sit through dinner without feeling anxious and struggling to breathe, because I needed to get back to practice. Relaxing was a foreign concept to me; how did one even go about this? And how would one quiet the barrage of accusatory thoughts of "this is time wasting indulgence" anyway?

When you endure pain for many years in a row, it corrodes your desire and ability to push through. Short term, much can be tolerated, but long term it wears you down. Sometimes even two days into suffering you don't feel so able to deal with it, and you start googling with ferocity to find an idea for relief. There is nothing gung ho left in me now days, and every fibre of my being craves soft gentle ways of living. Once I would have viewed taking a hot bath daily as indulgent, now it belongs in my toolbox of how to manage pain, lethargy, and associated sadness. 
These are my most used tools:

1. Sparkling Mineral Water
Drinking this is not like drinking water. The prickly bubbles feel so good on never ending sore throats. I feel slightly more effervescent after drinking it every single time, and wish I could afford to drink it constantly*. It's fun watching it bubble over when you open it, and not worrying that it will stain your clothes. Energy giving. Tonic.

*If soda stream produced the super prickly wake-you-up kind that I like, I would get one.

2. Kombucha
Enlivening like mineral water, but with great taste and a sense of drinking alcohol - good for people who find alcohol makes their muscles droop into the earth, and their heads spin (even more). Also good for people who are avoiding intoxicating their young.

3. Spiky ball
$2 Kmart purchase, worth far more. I use it regularly on my back and neck, and it saves me going to the physio 10x a week. Best used after heat, and followed with a heat cream.

4. Bath
Obviously this is not good if your blood pressure is low and baths make you pass out. But if you can hack them, oh that hot water relieves not only muscle pains but emotional too. Sometimes I use a guided meditation on my phone so that I will relax fully from toe to scalp and breathe deeply - especially when I feel I can't cope with all the sickness.

5. 90% Lindt
Low in sugar and highly satisfying. One square each evening with tea (tea is such an obvious tool that I won't give it a number, but it is my most used in winter). Work up to it if seems bitter.
 
6. Chewing gum
Unhealthy sweeteners, probably carcinogenic like everything else in life, but very helpful if you have zilch in the tank and really need to drive somewhere or walk. Gives a little energetic boost.

7. Flight mode on
Resting with a phone is more stimulating than it appears. It's lights, colours, mental chatter, and multitasking. It promises to distract you, and it truly does, but it distracts from peace too. Flight mode on, phone away, eyes closed takes self discipline but revives me better than scrolling.

8. Night sky
Sometimes before I go to bed I sneak out the back door and stare at the stars and the beautiful moon, and almost every time I get a wave of perspective. The celestial vastness exclaims to me that tomorrow could be better, that there is something to be thankful for, that the Creator of both the sky and myself can be trusted.

9. Text pals
Friends, in similarly leaky boats and less leaky ones, who are happy for most of the friendship to be conducted via messages of honesty and empathy. A friend who doesn't expect replies within 5 seconds and doesn't expect 'good vibes only!' Then be friends forever more.

If you have more magical methods for managing discomfort, please share them with me because each of these is a survival treasure, and I'm collecting.

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. 

going out when you're homebound

I did it again, a house leaving excursion which didn’t go extremely well. The last couple of months there have been very few excursions and a 100% didn’t-go-very-well rate. But things seem almost possible in pajamas whilst lying on the couch, and I decided to make a trip to pathology collection, lured by sleep. I’m really quite straight forward when it comes to motivations; my mind is trained on my next sleep, and my next eat. I knew Mum could drive me in the afternoon, but if I went by myself in the morning then I could rest aaaall afternoon and potentially not be some kind of aching grey puddle in the awful hour that is waiting for Ben to get home from work. The golden rule of being Marigold’s mother: Do not use up energy late in the day or you might run out before parent no. 2 arrives home.

If you’re feeling dizzy while changing nappies and putting on proper clothes you shouldn’t hop in the car. I know this. But I wanted a peaceful afternoon, so I wobbled on. And it feels so momentous to go out when you’re not used to it, the world feels very big and interesting after a small house.

In the car my right eye was swelling with uncomfortable tears. I am one of those people who gets colds in their eyes, and my eyes weep at their own sweet leisure through the day making me appear excessively emotional. I could vividly imagine them starting to run the second the needle went in, and assuring the nurse that I was not crying from the sting. Smarting eye, dizzy vision, cars and trees swooping by...regret was taking hold as I prayed through my short and dangerous drive.

There was a decent wait before it was my turn. Enough time to really thoroughly crumple. I usually make it my mission to avoid hunching and crossing my legs and conducting myself in a terribly gauche manner. But there I sat on one half of the ample chair, arms folded in on myself, wearing a grey top, eyes smarting, slumped over. Aware, but not correcting myself.

My mind began to race, about how to make it home – can’t get a taxi home with a baby car seat...this was unwise, I’m stranded...could Ben take me home in his lunch break, but that’s not fair because he’s been off work for me all week...but miracles happen all the time, I might be ok.

I eat a banana, get a glass of water. Neither seems to revive me.

It’s my turn, and the nurse and I smile at each other and acknowledge that we have met before. Many times, if we're honest. I prefer being pricked by her to anyone else. I remember that when I was pregnant and throwing up here there and everywhere, she stashed a few vomit bags in my tote because she knew I'd appreciate them. 

The paper work takes a long time, maybe because I’m getting genetic testing, and I try to bolster my baby’s patience with all kinds of handbag treasures. I’d saved the car keys till last, my piece de resistance, but they don’t seem jangly or spiky enough for her today.

“Did you fast for these?” She asks, forebodingly.

“No, I didn’t. The slip said non-fasting,” I reply.

“Ah yes. It does. I’m afraid one of the tests does need to be fasted for...”

No.

I’m so overwhelmingly drained, I’ve given so much to get my bloods done. In another life, I would have covered my dismay and said, oh that’s fine, never mind, I’ll come back another day. But I’m too tired, of being sick and being impeccably charming. I don’t hide it.

“Oh. Really. That’s a real shame. Because I’m not very well, and it’s going to be hard to get back here. And I also don’t know how I’ll go fasting because I need to eat through the night to sleep. I think I’ll have to get someone to drive me in another day.”

“Well, we could take them anyway, when did you last eat?”

“A minute ago. No, let’s not muddy the results.” I say

“You know what; I live just one suburb across from you. I could drive past your house on my way to work tomorrow morning and take them for you?”

I’m stunned by her kindness. I know this is an out of the blue offer, not a service offered by the practice. I know she is just being the kindest nurse in the world. I tell her how much it means, but that I couldn’t let her do that. We agree that we will take most of the tests today, and I’ll take the other one next week, on Ben’s day off. She says if I fast from 2am, it should be ok.

My eyes don’t weep during our appointment. I leave the practice. Her kindness upped my energy in a good way, it gave me just the right amount to get myself safely, if a little precariously home to my couch.

The gift of health is more absent than ever, but in its absence is an ever growing pile of radical kindnesses, spiritual epiphanies, and sweet unfoldings, which seem acutely precious.

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.

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

on vertigo and not socialising

I’ve never been blasé about the merits of being able to touch type. Ten years ago on MSN, it facilitated high velocity MSN conversations, and today it allows me to write this blog with my eyes closed on account of the vertigo.

Today in my appointment, which my mum had driven me to, I found myself feeling increasingly unwell. My thoughts began to flit from the conversation, at first missing only a word here or there, and then missing whole chunks. Where am I going to throw up? My mind obsessively probed the room. Aurelia was out of her car seat, and I was bobbing her up and down on my knee to keep her from crying, the motion intensifying my nausea. For some sick reason, my mind saw the bowl-like shape of the car seat and seriously considered it as an option, before spying a bin under the desk. While trying to produce the right amount of ‘Mmm, yes, yep’ sounds, which I can only assume were not being dispensed at appropriate moments in the conversation, I was fixating on that bin. I could grab it easily, it was perfectly nearly empty, the beauty of a morning appointment. It would be faster than trying to get a plastic bag out of the nappy bag, although the plastic bag belonged to me, and the bin did not. I was beginning to perspire, thighs stuck to the chair; it is so hard not to hurl when you need to. At last I managed to interrupt, “I’m sorry, this is a bit off topic, but I’m not feeling very well and was just wondering where I should go if I need to throw up?” And as I had hoped, she immediately offered the bin and placed it closer to me.

It has been eight weeks since I shuffled into Emergency holding onto Ben. The nurse who called me from the waiting room looked at the notes, and then the pint sized baby. She said, “So, she’s 24.....” and she was about to say ‘days’, but knew couldn’t be right based on the size of the baby. Then it clicked that I was the one with the problem, the new mum, and no, it wasn’t a haemorrhage as she suspected. I performed like a drunk when asked to walk and tiptoe, and as my world swooped around, I was grateful for the testing and the validation that yes, I had vertigo. Why, I asked? Is this a common post partum experience? The doctors said that sleep deprivation can have unusual manifestations in those with Chronic Fatigue Syndrome, and they thought it was one of them. Common? No.

But of course!

Some days I feel well, almost vibrant. But if I have a bad night, this combined with the last seventy nights {that is a lot of nights}, brings on the swaying, as does leaving the house. I stagger to the toilet holding onto door ways. I am nauseous, with lack of sensation in my hands. There is no cleaning, driving, crafting, or walking. But there is a trail of guilt. Guilt that family members haven’t seen much of Aurelia, because of me. Guilt that I am always an apology at events, always delaying catch ups, always needing a lift, always spending money to get help, always perceiving an obligation to share my beautiful baby and needing to keep her in my arms at home.

‘Stuff people,’ says my husband, who is the antipathy of a people pleaser and unchanged in fatherhood. It’s the nicest thing to say to a new mum with vertigo.

A new chapter has began. 

The one where I have to re-learn how to live not only as a woman, but as a mother, in a society designed for the busy. Like that mother and baby group I’ve been put in, which meets at 1.30 in the afternoon.  Are you actually telling me that mothers are awake at that time? And the maternal and child health nurse genuinely thinks that my three month old needs the socialisation? Because I kind of think we could all do with toning it down, and sitting in peace in the sunshine, and not doing from time to time. Maybe in some painful way it is good that I still can’t run on the western conveyer belt, so that I can show my daughter what it is to just be, and to be at peace with being not performing*. If she hops on, she might struggle to ever hop off. And who said the conveyer belt is even headed in the right direction? 

* If I can ever grasp the concept for more than a week. 

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

the hangover diaries

Unkown

I have a patchy and sporadic grasp of contentment. And it’s conditional. I will be content if my situation reaches my pre-determined ‘ok fine, that’ll have to do’ mark. But if something is just too far, too far off my scale, I throw my hands in the air and abandon the whole notion of ‘content’ as though it is entirely unreasonable to expect it in this situation. And then this omnipresent voice whispers to me, “But what if it’s true that suffering only leaves when it’s taught you what you need to learn? Then you will never be well.”

There is real peace about having had to curtail dreams, and reinvent life as I knew it. But after many years, I am tired of nurturing my health in the quietness of my home, and moving with weariness between the worthwhile-yet-boring pursuits that fill my days. I may not watch TV and binge on cake {actually, the cake bit is true} but when I climb into bed at night there is no sense of achievement. So, the house is clean and I made something for the market, what a life. The monotony is drab, my contentment dull to non-existent.

Enter the headache. I hope never to have one again in all my days. It started as they all do, with a wild weekend – seeing two separate lots of friends and vegetarian curry. But it didn't end with panadeine, water, and a dark room. No, it didn't end.

It was still there the next morning, and the next morning, and the next morning, and the next morning, and the next morning, and the next morning, and the next morning, and...the next five.

At first I was stoic and brave, though that phase was short lived. 

By day four I was frustrated and disheartened by the ‘endless’ ache. Like, what do you mean it won’t go away with chinese heat patches and hot showers and massages from Ben? Ben located the script for my old migraine relief drugs, to my lively squeals, but it had long expired.

On day seven I was perplexed and angry, and went to the doctor. The trip worsened the pain.

By day ten I was depressed and desperate, and went to the ‘manipulative therapy’ physio with the expectation that he would end the saga. Or else. After my session he said that I would have to wait five more days until my second treatment, to let things settle. Five?! I wailed to Ben. I won’t be alive in five days, so we have to sort this out sooner. Web MD didn’t say headaches lasted this long. What if this is the start of a brain tumour which is why no one can help? I went home in full scale despair. I thought that it would never leave because nothing was taking effect. Day ten felt more like month ten, and I truly wanted to die in my sleep, remove my head, or throw china plates.

Day eleven was more of day ten. I think I only mopped the floor, which obviously didn’t inspire.

Day twelve, I woke up to the sun shining and this bizarre feeling that I wanted to be alive, that there was hope. It coincided with beautiful friends praying for me and encouraging me, and it was that day that the pain started to reside.

The next day was a Saturday, and I have a special dislike for Saturdays where Ben has to work.

Not this one.

I woke up with clear vision and a mostly pain free head and thought: what shall I do? Make something for the market? Read? Exercise? Bath the dog? I can do anything. Intoxicated by the options, the irony crossed my mind. The dull existence of normality was now sparkling before me. 

Never mind a world changing career, I’m a thinking moving human who just saw the beauty in what I usually do.

I don’t expect to remember this for long, but, on pain of headache, I will try. 

Now, back to my not-so-dull reality.

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