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. 

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. 


Monday 

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. 

Tuesday

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.

Wednesday

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.

Thursday
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.

Friday

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.