Thursday, December 7

Mummy coming too?


A few weeks ago Aurelia was going out with Ben. She's been going out solo with him since she could first go without milk for a few seconds. He used to rush back and pass me a boobie obsessed waif, but the trips can be longer these days. It used to be her favourite thing to go with just him, but now she says, 

"Mummy coming too?" 

She asked it brightly, with hope that I would be joining them. 

"Mummy's staying home this time. Just Aurelia and Papa," I said. 

Resignedly she said,

"Mummy bit tired. Mummy need a little break." 

I felt sober as I agreed with her. How many times has she heard those words to be uttering them at just turned two? It must be hundreds of times. I was stunned by her comprehension, but hearing her disappointment in my body grazed me. My body has daily let me down and down, and it is not comfortable to know that it's going to disappoint her too. She was born oblivious, neither aware nor affected by my state, but each year she will discover a tiny bit more about how her mummy is tired, hurting, can't go, can't stay up late, can't entertain, can't work part time, can't exist as she expected she would. Aurelia encounters illness young, and she will watch it from the closest seats in the house. One day, it's likely she will glimpse me lying in bed unable to lift a fork and bowl because I went to one of her evening concerts, and will that hurt her more or less than me not attending? 
I'm like a rose which withers soon after it has opened. A saggy petal after my shower, and wilted by noon. I don't imagine it would very pleasant having a wilted mother. My mother is and was a beautiful and robust evergreen. I will have to figure out a different way. 
"Mummy bit tired," is certainly the sanitized version. I'm glad that she didn't say, "Mummy so wildly zausted she calling Papa frantically to come home from work, cause Mummy can't form nother word in eternal strength-sucking story she reading me, and can't cope with nother of my tantrums where I lie on the floor and scream, they must really push Mummy over the edge cause she buyed ear plugs so that she is less zausted by my commotions. Mummy and Papa lucky to get me in bed before 9 o'clock anymore cause Mummy holding onto to my long day sleeps like a woman obsessed. She must be very tired lady."   

I mean, we haven't told her all the gory details. 

I was watching the heart wrenching documentary about CFS, called Unrest. I've waited and donated for it's release since 2012. Interviewed in the piece is a mother who said she missed the events that no parent misses: sports events, dance concerts, school ceremonies, and parties. The big ones, where every mum and dad shows up with all the other exuberantly proud parents. But she said something important: CFS mums may miss the documented events (or suffer disproportionately afterwards), but they are more present than most parents. They can't fly out the door leaving a whiff of perfume as they drive off to work, and socialise, and volunteer. They are allergic to perfume. Current thought says that children need to see their mothers taking on the world, but I'm not convinced.  
Unwell parents will be there when their child leaves for school, and when they get home, and years after the toddler doesn't need them every minute. They will be there for listening and talking and reading and being, the being that occurs behind closed doors or in peaceful nature. They are not too busy. 

The pace of life in our family isn't exciting. I want to take her to Christmas Carols this year because the last two years I was not well enough from her waking in the night. It stung, the FOMO that arose from hearing of people blithely attending my favourite event and probably not being incapacitated afterwards. I also wanted to get through Christmas Day without a bad hangover, and that didn't eventuate either, despite avoiding a month of preliminary fun. My body objects to the flutterings of December that I have loved so much since childhood, and the missing out pains haven't completely resolved. But I spent some of the happiest mornings of my life that December, dancing her around the lounge to Rend Collective carols every morning, smelling the pine needles and her pink onesie, and showing her Christmas lights and mice on the tree. In our home tucked away from eyes and hype, we lived quite wonderfully that month. 

It is to my detriment that I forget that the unseen and undocumented lounge room living is as important and impacting as all the rest. Not as glossy, no, but full of heart. My body is a bit tired and I need a little break, but my heart has as much vigour as it did before I wilted. Hearts can be green when bodies are withered, and love is not bound by the vessel it dwells within. Love can be exhaled in a quiet moment from a weak person on a couch.

Wednesday, August 16

what evil befell me in the night?


On Tuesdays I have a slight problem. I have a problem that I don't want to talk about much, because I know full well that I am to blame. And if I talk about it, well, then my counselling listener may say: "How about you either stop bringing this upon your self, or don't complain? Don't hurt yourself and then moan that you're hurt."

And I fully agree, and fully disagree. 

I wake up in the morning on Tuesdays and hello dark world, something is wrong. What evil befell me in the night? Yesterday I was living on land, and today I have been dragged beneath the deep waters and not been turned into a mermaid. A metal corset has been screwed around my waist, and hanging from it are two rusty chains with concrete weights attached to them. I have to wade for hours, and the waters feel thick, slow, and the weights are heavy.

My cells are not the same as a healthy humans, alas. Though, alas is not a sad enough word. Alas seems to shrug, too nonchalantly.  

My cells cannot heal micro tears in my muscles whilst generating the energy I need, all at the same time. That would be asking too much, that would be asking for the pleasantness of normality and we must not forget that All Normality Must Have Very Unpleasant Side Effects. If it didn't, would I really have CFS?

I ate a delightful slice of normality on Monday night. I've been starved of normality ever since I was eighteen and it became a status not to be attained any longer.
 I dance with radical happiness on Monday, ecstatic to be moving and strong enough to move. I don't feel my illness once I have begun the class. I am in a room of women who are intoxicated by ballet's precision and elegance, who are sensitive and who laugh freely. I laugh too freely, to the bright-red and sometimes way-longer-than-anyone-else stage, to the dorky stage, to the 'faithful bladder, must we flirt with disgrace' stage. I am not Danielle-The-Ill there, I am Danielle. I dance with all of me, I laugh, I talk, I forget pain and loneliness and difference, and I feel as myself as I can feel. Without a moments hesitation, this is the most pure spark of joy in my life. It's an antidepressant bordering on euphoric drug - but I of all people should know that antidepressants are not side effect free. My last one caused my mind to conjure up such abusive sweat-drenched dreams that I had to farewell those little pills of yin and yang, stability and torment. 

My cells stop giving me life while they work on my broken ballet muscles, leaving me feeling sub-human, a human body in appearance but chained in painful slowmo land.
Oh I need to get a nappy for very-busy always-talking toddler? OK, sure. Let me wade against this heavy water, or is it oil, it must be denser than water? I'll try to shift with these weights dragging me low. Oh, now I need to empty my own bladder. I think that can wait a dozen minutes or hours. I can't fight the seas and these chains. I am just too drowned to do much more than survive. I read "heave ho, up we go," Aurelia's book about a bus that has gotten stuck in a hole. She dictates that I read this book two hundred times a week, and it is not lost on me that I share a lot in common with this pit prone bus. On Tuesdays it's hard to say "heave ho, up we go," let alone "heave ho" myself around.  A tractor gets it out of the hole. My tractor is Wednesday's arrival. 

The side effect of one hour of dancing and half an hour of talking with people I love...is, well, a kind of internal physical abuse that lasts twelve hours. Do the maths and it seems that perhaps the side effects aren't worth the pill. 

But here is the thing: I am so wretchedly tired of side effect mathematics. And even more tired of side effects themselves. And even more tired of avoiding side effects, which is code for: not living very fully. 

I have been reading a book on raising children and the author puts forward that parents and educators should equip children with a rich interest in many good things - in literature, art, food, movement, music, nature, truth. Things that will later help that person live fully, not miserably and messily and depressively. (Not that mental sickness can be whisked away with a dose of nature, if only, but it will always enhance a life.) Seeing the beauty in life, given to us as therapy, is essential when work and challenges rise high.
Humans weren't meant to live between four walls, their only contact with the outside world being a screen. Illness often forces one into a little four walled prison, with not much abundance of life. 

I choose to live fully on Monday night and suffer fully on Tuesday, and the maths of pleasure to pain doesn't work out, and I could avoid that pain if I didn't go, and I should not groan that I hurt horribly when I brought it on and even paid money to bring it on...

But, I am a human being and I need to dance or else I might morph into a grey-minded robot who stays at home to avoid micro tears and macro consequences, and whose heart forgets what liveliness is, embittered by caution and restraint and post exertional malaise. Embittered. Physically struggling, but not putting up a struggle against despair. 

In the end, I can risk torture Tuesdays, but not a listless life. 

Sunday, May 21

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.

Tuesday, May 9

energy free

I am an energy conservationist.

It's been my occupation since I was eighteen. I was pushed into it; it definitely wasn't the direction I wanted to go in because I am by nature a creative. I'm not going to lie, it's a high stress job with evening work, weekend work, and very few holidays. I'm responsible for rating the energy required for each day, each component of the day starting with showering (if there is enough for that), and ensuring that there is some surplus at the end. It's a very precious and rare resource, and sadly endangered. When we get into major debt, it can take a long time to procure more because it isn't manufactured by man.
Living without it is in those times is catastrophic for those involved to say the least, so my role is to scrupulously ensure that all is being done to conserve it, whilst also not putting an entire ban on the use of it because it is a resource that is required for human flourishing. It's an excruciating responsibility to get the balance right, and I err from time to time. 

Right now is a difficult time in this industry. I perceived that a wedding at the start of April was going to take all the stored resources from a bounteous summer and put us into major energy deficit. I tried to minimize the usage, but my worst fears were more than realised. The deficit was large, gaping to be honest. The worst in years.
As already stated, there is almost nothing that can be done to procure more so once you get to this point it's a waiting game, and patience when there is no given end point is the hardest kind of all. I thought there would be a recovery of energy, ready for distribution to the affected parties 14 days later for a flight to Queensland, but no. Even away in the warm Sunshine Coast, renowned for it's energy production, I was unable to lay my hands on any. The suffering from it's lack was dizzying.

Coming back to Victoria was hard because the mission to Queensland had been unsuccessful, in that way at least. Despair is creeping in now, because it's been a month without this resource, and that's a long time. We're also heading into Winter which requires a vast amount. It's hard not to look back and go, "What could I have done differently? Is this my fault? How on earth do I procure more?" That's the stress, when I've done my best to conserve, it's totally out of my control, and I simply cannot manufacture more.

Now my role is about encouraging those without energy to live simply and wait expectantly in good spirits until it arrives. They tend to believe there will never be any more when it gets to this point so I have to try and bolster their dormant sense of optimism. Remind them of the deficits of the past and how it did come, in the end. That they will be able to walk and dance and drive and knit again. These days are hard from dawn til dusk, there's not enough for the most basic human needs, but I've been in this job for eight years now and I know it will come.

When it does, I'll be back to rating each event of the day and year and trying to eke it out with wisdom. My role cycles on and on, like the moon and the tide.

I wish there was energy as plentiful as the deep waters of the sea.

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.