Tuesday, April 11

So long as you're healthy that's all that matters

My thoughts are scattered as I recover from what I hope will be the biggest event of my year. Joyous and big. The term 'recover' is a euphemism, for acutely, deeply suffer. It sounds so cosy and hopeful, and not at all as shocking as the reality, so I use it though my mind mocks it simultaneously. There is no sense of recovery yet, just physical devastation.

Today I had to shower after two days of being too unwell, and with a husband to wash my hair I managed it. Immediately afterwards I felt proud, cheerful, and fresh with my clean hair and deodorant. I lay back in bed glowing (well, actually limp and palid) with achievement and hope, but the exertion caught up with me in a few minutes. I am pummeled from my effort. It's a few hours later and I have been zoning in and out of lucidity, I blacked out as I got up to turn the blaring Beethoven off, and I'm squinting with light sensitivity.

I am jelly. I am weak. I am fragile.

The 'strength' I woke with evaporated in the shower. I am humbled to be so needy. It's easy for the next step to be: I am worthless. Because I can't look after my girl or move or do any of those mundane but value giving duties. And if I am worthless {which I am not, because my Creator God made me meticulously and lovingly} then are those who are the most able bodied the most important and valuable? And those who are disabled or ill or unborn the least?

People always say, "So long as your baby is healthy, that's all that matters." Do unhealthy babies and humans matter less?
Everyone matters.

I leave a thought provoking article which deserves reading to the end. If you are interested in mind-body philosophy, anxiety, pregnancy, or suffering in general it is an interesting read.

SuperBabies Don't Cry

Friday, March 10

glow again

There will be evening air to drink
                                      laden hopeful air
You'll have a deep belly laugh
                                   blah will sculk away
Sure as day's dawn so a time will come
Where you float instead of sink

There will be a whole night asleep
                                     peep and wail unheard
You'll frolic along the beach
                         content as smallest sand  
Sure as stars burn so a time will come
Where you are not prone to weep

Seems the time will come too slow
But memory tattooed me this -
Swift as clouds melt to other forms
          shifts can come and flow
Over your wan weary bones and make you warmly glow. 

Friday, February 24

a week in the life of yours truly

The eight years of Chronic Fatigue Syndrome gong boomed in my ear earlier this month. I felt mostly numb, and talked about it with no one. I thought it would be a two year blip when I was eighteen, because that was the word on the street, but a decade looms. I think how hard existing has been, and I think how eternally grateful I am to have met my man and carried a baby, because this has eased the sadness 100 fold.

Charlotte Bronte says things how they are, which is why I adore her words. She writes in Shirley:

Men and women never struggle so hard as when they struggle alone, without witness, counsellor, or confidant; unencouraged, unadvised, and unpitied.
And while I have felt acutely that I am an invisible minority, I have also had so many encouragers, advisors, and pitiers who have made eight years far more bareable. I want to list their names here but I would probably omit one and regret it, so I list them silently in my head.
I've been sick in a comfortable home with a full fridge and kind friends. This is not the way some people are suffering, and my heart aches for them.

I remember earlier times of this disease being acutely intense, and other times where I had a little business and stayed awake all day. This is a snap shot for my own memory of now, eight years through. I say through because the notion that I will pass through to the other side of this still lives in my heart, especially when I see how far I've come. 


It's chill, and grey, and I am utterly exhausted from feeding Aurelia twice in the night and having insomnia. When I had at last fallen asleep, she needed to be soothed with milk at 12am, and I had to fall asleep all over again. It was a gutting experience, to be repeated soon after. 

I feel ghastly, heavy, weak. And numb inside. I don't know how to smile. I don't think I can endure the day, hour by tortoise hour. Is it the grim sky or the sleepless night which makes me so sad? Duty is the only force in my body today, and it is a stodgy one. I feel so weak that turning the steering wheel into our driveway is challenging. I can scarcely believe it's powered steering. I wish for help, but it's scheduled for different days. The last part of the day is spent lying on the couch while Aurelia brings me books and I try to be entertaining whilst horizontal. She hides her cat puppet up my top, and I make it meow till she takes it out. I try to smile and laugh for her sake but it is so forced. 
Ben gets home and I tell him I am so low that I don't want to be alive. These conversations don't alarm him too much, because he knows I am rarely hopeless for long.  

"God surely did not create us, and cause us to live, with the sole end of wishing always to die. I believe, in my heart, we were intended to prize life and enjoy it, so long as we retain it. Existence never was originally meant to be that useless, blank, pale, slow-trailing thing it often becomes to many, and is becoming to me, among the rest." Shirley, Bronte. 

I didn't think I could go to ballet, but after he has taken her and I've had a hot drink I decide to beg my body for an adrenalin rush if it won't give me any at home. After a whole day of no strength I want a shot of it, to cheer me. I want to prize life and feel fully alive, so I go to ballet, initially weary and melancholic. Concentrating so fully on finesse and defying gravity breaks my mind's focus on monotony, and I come away with very sore feet and glutes, but uplifted spirits. 
Tonight I drift off easily. She feeds twice again, but I sleep in between. Its the first time since I began classes a month ago that I have slept normally afterwards. That means my mind has finally processed the experience: it has defibrillated ballet.
I'm elated when I wake and realise that my brain has made peace with an outing. 


No insomnia. Sun is shining. My mental optimism is powered almost entirely on sunshine and sleep, so I am like a different person. In the past month I've been couch or homebound on Tuesdays after the exertion of Monday night, as my body tries to replace the resources I extravagantly poured out. 
Today is different. I don't have a hangover. I'm not seriously energy deficient which makes me wonder how much of my hangover has been related to those shocking nights of my mind processing ballet though wakefulness and vivid dreams? How much of my hangover is due to muscles healing? My muscles don't feel too broken, so perhaps that's why I have more strength. Do more broken muscles mean worse sleep, because my body pours resources to my muscles instead of into sleep? I know full well that it takes energy to sleep well, a strange oxymoron. 
I always nap for 2 hours (or a measely 1.5 in this case) in the morning with Aurelia. I can't stay up all day, or I wilt and collapse. After this I go out with my adorable toddler to the park, and it's so much easier to wield the steering wheel today. Less muscle malaise, more smiling, and most notably: no thinking I can't get through till dinner time. That is the hallmark of a very very good day.


I think my throat liked that we got to sleep from 12am -6am without interruption. It felt nice and friendly in the morning when I swallowed, which is rare. I decided to scrub our poor scummy shower before our nap, which was a tiring exercise. I wanted to sleep immediately after that, but Aurelia needed significant and lengthy help to fall asleep. Aurelia was cared for in the afternoon so I could go to the gym. I really just wanted to go and lie in a park and drink Remedy Kombucha while she is not my responsibility - but, self discipline wins. My gym program is helping me feel strong, and go to ballet, and avoid neck issues and migraines. This program is the most effective thing I've done in five years of gym, because it is designed so that I won't have bad muscle malaise afterwards whilst still being very effective. {Keiser Training}. I fight my lazy side hard through this hour. It moans and groans to me incessantly and so I have to engage in mental warfare which it is all the harder because the exercise bikes look onto a pizza establishment and I see happy people who aren't sweating going in there. They really do look happier than weedy me and the protien guzzling hulks. Pizzas have protein too. When I get home its hot and I'm feeling like shakey jelly. I flop round on floors and couches while my girl is entertained and keep on flopping till dinner and beyond. Overall a good day despite an energy-free afternoon, because it passed without a 'can't make it through' crisis, I had a helper and companion, I did what I needed to.

What a night. I was still awake at 12am tossing in the heat when she first woke, got some sleep before she woke again at 4.30. I dread opening my puffy eyes and swallowing. Today it would be better to just lie in oblivion, but I have a toddler who comes in giggling to show me her dog book. Ben doing the dishes for me before work makes me feel slightly less distressed about living today.
I'm really too tired to write much tonight: this is rare brevity for me, tis not my strong suit. We made it, just. My mother came to mother my young, and I brought veggies. I didn't feel too sad. Bed is nigh. Goodnight. Please may it be good.


Today's struggle is brought to me by Aurelia's howling at 12 and 3, and my trouble getting back to sleep. (I only know these times later when I ask Ben because I have a strict no-clock rule). My difficulty falling asleep and need for a lot of it are hallmark CFS symtoms, and the main reason we were terrified to have a baby. Truthfully it has been as hard and harder than we imagined, especially the year of vertigo. Yet here I am, 16 months of broken sleep later, and arugably more well than I was at the onset of my illness. I used to be just as sick on 11 hours sleep. There is no way I could have stood without fainting or lived without a deep headache under these conditions in past years. Certainly I am under the weather today, but there are degrees of it and I have been worse from almost no exertion. CFS does not remain the same in eight years, there are slow shifts backwards and forwards.

When Ben drops her in my room as he leaves for work I still haven't opened my puffy eyes or lips. He leaves his work number by my bed because we both know that I may not be up to caring for her properly. I need too many sick days and can scarcely have one.

I'm just hoping I'll be well enough for the things we have on this weekend. Not that hoping is an effective thing. I am more accurately consoling myself that a lot can change in 24 hours because I've witnessed it many times. Celebrating Ben's birthday is one of the weekend activities and I baked his cake 10 days early because I knew I may not be gifted with health on the right day/week - I've learnt after the last two years of being caught with no cake for this reason and feeling like a horrible wife.

My sister's piano student cancels, so she calls me and asks if she can help? This is the kind of unexpected thing I have grown to expect, a perfectly timed kindness, and I agree.
I'm ragged, but I'm still feebly kicking, and Aurelia's kicking and sometimes screaming. I'm pretty grateful that this week is over.
It could have been worse, if I'd had a glandular flare, headaches, or events to attend, but it was very sleep deprived. Ebb and flow, wax and wane, up and down - I know better sleep will come. Goodnight.

Wednesday, January 11

a lesson from my husband

I went to pick Ben up from the hospital and this time he emerged not as staff, but as patient. It had been his turn to lie unconscious on the table. I think this is a better state of affairs than lying fully conscious on the table with engulfing hospital phobia, but that is not the point, that is just my brain feeling a tad traumatised about my adventures in child bearing. His nurse spared no expense on bandaging his leg, and his limp matches the bandages in its pronounced manner, keeping one leg entirely straight at all times. He clonks along, slow and rigid, surprisingly adept at avoiding bending his maimed leg. He doesn't err; he finds creative ways to always keep it straight. Pain is the deterrent, and a powerful one.

Oddly though he now walks, I would never expect him to bend it so that he would look more normal. It would be cruelty to suggest he pains himself to improve his performance or suit my pace.

Yet how many times have I bent my metaphorical sore knee, to keep pace with the unmaimed? I see it as instinctual and right for Ben to limp to avoid pain, yet I feel pangs of guilt for avoiding pain, as though I am selfish for staying ok, for not living on panadeine forte like I used to in my student days. Guilty, for carefully adapting my gait so that I won't damage myself, so that I can enjoy being alive. When I am pain free due to careful limping, I sometimes wonder if I should have done more...is it cushy, that I had a quiet day and have no headache? Or ought I have stepped out, bent the injured knee, suffered more and contributed more? But how I detest pain which I could have avoided.

Is it a basic human right to reduce pain where possible?

For Ben's limp, I answer of course. It would be masochistic not to limp.

For my body, I pause.

I wobble on my tightrope. It's impossible to limp so well that I can avoid discomfort. I try, because I need to be well for Aurelia. I need to be very functional. It would be foolish to lie in daily comas because I worked too hard or socialised or stayed up late. Conversely, it would be idiotic to stay at home, live in squalor, and never see a human to avoid stimulation.

I cannot avoid pain entirely and will always be evaluating the wisdom of each outlay of strength. I am utterly weary of the analysis, the endless fumbling for wise decisions. The consequence free decisions of the well are a peace they are not aware of, whilst the decisionathon of my own life is a breeding ground for anxiety and analytic mania.

But if I can let my body heal a little, and feel joy not despair at being alive, and not groan ceaselessly to my nearest and dearest, requiring all of their care, because of the pace I have adopted, that seems right to me.
Right to minimise pain, to limp, to not keep pace, to respect my wound.

How compassionate we are towards a tight bandage, a white flag of legitimacy.

But I have no bandage.

Tuesday, December 20

i was seen // hangover diaries

When I was little and sick, my mum would fetch me a snuggly quilt, make perfectly crisped toast, sit by my bed and pat my back so soothingly that one day I would try to emulate that exact motion for my own young. Having your mother sitting there is the gold standard of being unwell, and it's harder to find once you grow up. You're so seen and loved in your pain when you're small. Symptomatically alone, but that's where the alone stops dead. There's no emerging from your illness and being asked "where were you? Oh you were in your room with a fever for three days, I didn't know." Nope, she's seen every limping trip to the toilet, and passed you water the whole time.

But now I'm grown, and no one is patting my back.

My cushion is damp. I have watered a lot of cushions and pillows these eight years, preserved them in salt. I don't soak them with gushing waterfalls anymore, because shock and grief have mutated into sober familiarity, a mellower, gentler beast. I sometimes think it's unnecessary that it still trickles out...like there is a pool behind my eyes called 'chronic pain' which ought to be empty by now. I cry the exact same tears, the cause is unaltered, and the emotions have long been acknowledged and disected. My pool seems to have a refill mechanism when I'm lying quietly, and my body is raging ungratefully that I participated in life outside the home. How dare I. I was once asked, "but can't you use less energy when you're out? Tone it down?" No. I can't. It tumbles out, my small supply, and I watch by in trepidation, powerless to gain more power, or prevent loss of power. Powerless to prevent my own suffering.

The droplets are salty, but the salt isn't bitter.

The droplets are more, this is disgustingly uncomfortable, as usual, as expected. It's just as I knew it would be. It's identical.

No one can see into the misfunctioning cells, muscles, sense of balance during the time or afterwards. It's in the dark recesses of me. I can tell them, but it's so dreary and morose I can barely be bothered, so I will just feel it myself. If I'm not seen by anyone in this time, if no one can imagine my pain or view it, let alone cure it, how alone I am. How nobody I am in this moment. I must lie and wait, wait till it eases, invisible, feeling helpless and dispensable...but for my all knowing, all seeing, sky painting, language making, human weaving, gift giving God. So I am seen, I am not forgotten. I am as legitimate and valid as a mother's sick child.

This thought is warm and luminous.

On my porch this hungover December, hungover from festivity-x-suffering, sat a large woven basket with my name written on it. I unwrapped a large sheet of fabric encasing the contents to find no ordinary pre-packaged hamper. It was filled with home-made cake I could eat, home baked cookies, and crackers, and hummus, and bars. Sparkling water, tea, soap, berries, every conceivable festive, delicious and healthy thing in sweet pottles. It contained every special treat on the menu to those with sensitivies, many un-buyable. It was a bottomless pit of seriously thoughtful time consuming gifts, brimming with every thing I hadn't shopped for and hadn't baked and wasn't going to.

The note was from the mamas in the group I don't go to. One of the harder things all year was seeing and knowing that women with babies were meeting in groups and I couldn't manage to because - well, I had to nap twice a day and it fell during group times, and if I used energy seeing people I couldn't make it through to dinner time. The usual complicated trickle down of Chronic Fatigue Syndrome.

The note said that they dearly loved me. They barely know me, they haven't seen me enough. I have been missing from their times together, they met dozens of times times, and I tagged along twice. They're talking about the verb - to love.

To extravagently love someone who has done nothing for you.

It would be easier to make a huge handmade hamper for a person they had grown fond of all year, but no.

That hamper said: You are so seen. You are no outcast.

It was the most overwhelmingly golden standard, in adulthood - love, because they also know the "you did nothing for this, but I love you" kind of warm luminous love.

Thursday, November 24

to all the complicated ones

To all the people who like things to be perfect, who notice crumbs and stray hairs (and attached hairs with juicy roots) and endlessly remove them, then wearily re-remove them when they re-appear and try not to despair, but do.

All the people who notice feelings, their own which are bursting, or morbid, then moderate for a second, too short, then back to extremes. 

And all the decisions which were chewed to peices because there is always some losing in the winning and why must there be...this imperfect business is hard to accept...

And all the words which scurry around in heads from all the conversations, their own imperfect words, and the other person's words, the clashes and the synchrony, and the general mayhem of chasing them off to bed when they will not go, when they are still perky at 1 am in the morning and show no signs of settling down at three. 

And all the vibes between the words which are far peskier than the words themselves.

All the people who have strange rituals and want to kick and scream like two year olds because it all boiled up and spilled over and left them worrying they weren't quite right in the head, when they don't need an asylum at all. 

All the ones who have a reliable intuition, and know when they know.

All the plans for a perfect date which end in graves of dissapointment.

The ones who can't pick up the phone when it rings, and can't believe that it was engaged when they had finally psyched themselves up to call, the ones who get nervous on their way to friendly gatherings, nearly faint as they walk through door ways, and endure pounding hearts when the door bell rings. 

All the monotone skies which shouldn't affect the will to live, but do, and all the while sensing that many people aren't feeling all these things quite so acutely and aren't finding existing quite so hard. 

Then all the flooding self recrimination for being sensitive to skies and hormones and persons and medications and changes and things.

All the people like this are aware and raw and gentle and fascinating and worn out - its horribly uncomfortable, but goodness gracious me, you are my favourite of all and your presence is a balm and my feelings for you are not moderate at all and my intuition says we were meant to be on earth at the same time to comfort each other.