a confusing time of year

found

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

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

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

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

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

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

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

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

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

Happy Christmas.

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

   

words for wednesday {page 13, are we friends?}

The trouble with me is that I fight CFS. We're always talking about fighting and battling illnesses, particularly cancer, because we want to come out on top.
But with this one, the more you deny 'it' what it wants, the more it eats you up. The harder you fight, the longer the battle will be. In the first year or two, I fought it passionately by going to university despite the pain. But it won, of course. Now, I fight it on the home front.

It says, “Ok, I know it’s only mid morning, but you are off to sleepy land now.”

I refuse, keep doing what I am doing, eat something, drink something, beg it to give me a break and let me stay awake. I even whip out the tears, as a last resort. But it wins, and soon I am nodding off to sleep with my quilt, at 10.30 am.

The other perspective I could take is that ‘it’s’ not so much my enemy but a faithful spy who knows the inner workings of my body. When it commands a rest, it’s doing so because this is what I need to someday regain my health. I want to push it away and annihilate it for stopping me from doing so many things that my heart loves. But perhaps it’s not my enemy after all, perhaps if I fought less we could get along, become a team and make some more progress?

After writing this, I found this - I am still deciding.

“Discovery consists not in seeking new lands but in seeing with new eyes.”

Marcel Proust

“Happiness can exist only in acceptance.”

George Orwell

“Hope itself is like a star - not to be seen in the sunshine of prosperity, and only to be discovered in the night of adversity.” 

Charles H. Spurgeon

words for wednesday {page 12, nice people}

My friend finds the best words and gives them to me as presents. She found the ones you read today.

“Fame is a vapour

Popularity an accident

Riches take wings

Only one thing endures, and that is Character.”

Horace Greeley

And then, I think what my friend wrote after this is even better. “It doesn’t matter if you spend 8 hours a day at a job you hate or all day in your home. It matters who you were in that 8 hours."

I just have me left - I don't have the qualifications or income or social life I had envisaged. Sometimes I feel scared even to talk to my hairdresser in case she asks what I've been doing that day. I fear someone will come to the door while I am asleep at midday. I feel that I need to justify my very existence by proof of things achieved. It's the darkest cage, the thought that I am a waste if I don't do the usual things, have the conventional life. But when I think that it's how I live my moments, I feel like I am alive; that my days matter, that my existence is valid.

  

"Kind words can be short and easy to speak, but their echoes are truly endless."

Mother Theresa

Disillusionment with medics had settled thick inside me, and last week I had to attend another appointment with a nurse to be put on a ‘care plan’. I wasn’t looking forward to it – I could predict the unhelpful comments and anticipate the deep sense of misunderstanding I so often stumble away with. 

‘You only weigh such and such, are you sure you don’t have anorexia rather than CFS?’

 ‘You don’t eat sugar, dairy or wheat; I’m concerned it’s not a balanced enough diet.’

‘Your tests are all spot on perfect, so things are obviously going well.’

But this nurse, she had me bouncing out of the clinic, ecstatic. I actually had an adrenalin rush from happiness, and managed to go to a few shops afterwards before it wore off. Not only did she empathise about my illness, she spoke with sadness about all the misunderstanding that invisible and longterm illness sufferers get. Centrelink, dreams lost, and patience were just some of the things we talked about. She knew I was petite, she knew my diet was healthy, she knew I was sick. We laughed and talked for almost an hour and every word she said was balm to me. It was like having a warm bubble bath after many ice ones.

I went away and thought that if every single person was as kind as she was, we would have a very happy world. I naively wonder why more people can’t be like that? She is doing one of the greatest jobs on earth.

damned if I do, damned if I don't

This is the damned if I do, damned if I don’t illness. It feels like that, anyway.

When you are raised to do your best always, work diligently, and provide for yourself, the transition into life with chronic illness is incredibly difficult. It is a humbling sometimes humiliating transition. These ingrained values and expectations battle violently with the new realisation that self-care is vital to recovery. 

At times, the internal struggle sends me mad and robs my freedom. There is little spontaneity and freedom in this life, as everything is carefully evaluated and planned for survival. I cry for the days where I could do something which didn’t cost me something else.

Activity = illness 

Rest = feeling lazy, depressed, unfulfilled

So you say, it’s simple, just do a little bit. Enough to feel like you’re keeping busy, but little enough to keep in decent health.

That would be perfect. But life just doesn’t come in bite sized portions: houses need cleaning, meals need cooking, people need seeing, events need attending, and every single time, there’s a cost to do it, and a cost to refrain.

When I leave the dishes in the sink for Ben to do when he comes home from a day at work, the cost to me is emotional. I hate my vulnerability, the burden I feel that I am, the guilt of staying home all day and pursuing only leisurely activities. Tears of frustration burn in my eyes as think how wrong it is that Ben has to do so much. 

When I make the decision the other way and do the washing and the vaccuming, I am tired and sore and need him to bring me dinner. I feel like I’ve lost again.

I feel like I’m damned if I see the friend and endure the resultant pain, and damned if I don’t because of the time lapse and guilt. If I cancel my appointment I feel relief, but also confusion as to whether I was right to do so. I accuse myself when I stay home from an event and end up feeling well, and when I go to an event and crash significantly.

Ben and I are invited out to catch up with old friends. Battle breaks out in my heart instantly. Should we go even though the relationship is unsustainable in the long term (due to family and more essential friendships), or turn down the thoughtful offer and risk hurting them? After great debate, a message of decline is drafted. It is based on a phrase I try to live by:  speak the truth with love. 

Thanks so much for your kind offer. We would have loved to see you, but to manage Danielle’s chronic fatigue syndrome we really have pace, and limit relationships...

As the message is sent off, I feel the typical wave of unsureness. How do I know that I’ve made the right decision? Maybe I’m just a selfish, lazy, hyperchondriac – I wonder, for the millionth time in a week. With so many decisions to make every day, I become weary and confused. 

Often the replies to my decline message show little empathy about how much we struggle with this situation too, and are ‘that’s ok’ in nature. The sting is milder each time, but it’s never pleasant. 

Most of the time, I don’t know whether I am being selfish or wise. It’s an endless conundrum. How little should I do to preserve my health? How much should I give out to the detriment of my body? And how will my body react to each thing? What is the best thing to do?

I don’t yet have the answers to the mental terrors of managing an illness. I know it will become clearer to me at some point, and if you have a tip for me, I would be so grateful for it.

All I know is that not everything is a right or wrong, and perhaps even the words wise or unwise are too strong. There is much grace for the things that matter. I can never know the consequences, and I can never micro-manage my life to perfection. I think the best thing is to stop second guessing and revisiting decisions. It’s the phrase of our decade and said too often, but it means something to me: Live in the moment.

Or as this blogger so beautifully shared,

“When I put my whole heart into where I am in living each moment, I will find (a lot more) peace and joy.”

you don't know that you're toxic to me

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.

photo source

being alive

source

Yesterday morning I got up and went to Indoor Bootcamp, for a grueling hour of burpies, sit-ups, running and weights. I felt a certain elation amidst all the torture and grimacing at the fact that I was actually fit enough, strong enough, well enough to do this class. I blended in with the ‘well’ people, my instructor wouldn’t have known that two years ago I could barely walk to the mail box. 

When I arrived home, Ben asked me if I’d like to sit down and have a drink before we headed to the factory outlets in order to replenish my underwear supplies – which had been seriously dented from owning a sneaky puppy with a penchant for bras and undies (and partially because I use the floordrope more than the wardrope). I didn’t feel remotely tired, so I suggested we hit the road right away to begin our shopping.

After a successful trip we went home for lunch, and instead of lying down before Puppy School, as any wise CFS/POTS sufferer would, I pulled out my flute to practice. 3pm came and we hopped in the car with our Wolfgang for one of our favourite events of the week. There were less dogs in the park than there usually would be before our class, and then one of the staff came to say that there was no training today, because it was above 35 degrees Celsius. I was seriously disappointed...but my disappointment quickly turned into shock.

I had no idea it was so hot!! I knew it was a warm day, yes...but usually when it’s anywhere near 30 degrees, I’m lying in bed with the fan and a bucket, nearly crying from my bodies’ reaction. My ill body refuses to work, my legs swell up and I am like a wilted flower. 

I looked down at my feet, just to check – they weren’t pooled with blood with ugly veins bulging everywhere. I didn’t have a headache. I just had energy, and a total disbelief that it was too hot to train our dogs. All sadness that class was cancelled melted into ecstatic joy that my body was behaving like a well body! 

This is just one little example of all the delightful surprises and shocks I am getting every week. It just throws me completely.

The other night on our holiday I suggested we go to a bar or cafe. Ben was recovering from a cold, and didn’t feel too well, so we decided to stay home for that reason. But oh, the contrast that I was the one who wanted to go out, and Ben wasn’t up to it. So I lay in bed reading my book while he slept and delighted in the fact that I had energy to spare. That’s when the real healing takes place – when you have strength, and instead of using it up right away, you just relax and savour it.

I sometimes look at the couch – we brought our puppy so that I would have someone to lie with on the couch. And yet, I’ve barely spent any time on the couch in the last couple of months. My puppy spends a lot more time lying there, while I potter around. 

This is the happiest summer I have ever experienced – spending days on end with Ben who has finished his studies, and rediscovering the joy of health. Enough suppressing my hopes of recovery, they have bubbled up and refuse to be cautious any more. I actually think I’m getting well.