essence of sad

Have you been so sick for so many years, that you lack the will to go on?

They say health is the most important thing, cheerfully they pronounce it, to inspire their gratefulness, 

to wash away their great unhappiness.

But you don't have health. 

You don't have well. 

They say friends too, they are better than career you know. 

Career, it went, but friends you have. 

You have friends you rarely see,

friends you hold on to, but always fob off. 

You love them from your couch, but it isnt enough.

You don't cook for them, ever, and you're always writing to say 

'less than an hour, but I love you ok'. 

I'd love you better if I could. 

My mind loves you. I swear. 

They say happiness inside, that's up there too. 

Peace for the ride.

And you have that one. But with essense of sad.

You want it unconditionally. 

In the sore, crawling, lonely, drought.

But it morphed into sad, behind your back, so now you feel bad. 

That you're sad. 

Sick bad, and then guilt bad. 

And lonely bad, and too-long bad,

And hermit, outcast, worthless, cold,

too-much, and can't-go-on bad. 

Till the sun pops out. 

It kisses you and hugs you and shouts:

It's a beautiful day to be alive.

Alive. 

You have alive! 

And alive is meant to be here,

and meant to be here is purpose,

and purpose is go on. 

my flute, the closet, and i

found

I’ve been spending time in the walk-in-robe this week.

When I was a young musician, I selected the room with the most echoes and delighted in the sound of my playing which filled every nook and cranny. The reverberance of our wooden floored home covered my flaws, and even a cracked note sung out with beautiful deception.

My first flute lesson at the VCA was conducted in my teacher’s brick office. Not only was it carpeted, but he had added panels of foam and carpet to the walls to dull the sound. There was nowhere for the sound to bounce and rebound. When I played a note, it stopped dead at the end of my lip plate – even my best notes sounded woeful, brittle, and a far cry from the sonority I enjoyed at home. It was all cardboard and no angels, and that was a shock. I was and am terrified of flute lessons, and the combination of nerves and a damp room made for humbling times. Humbling and sometimes tearful times.

I began to realise that I would best improve my sound by playing in the rooms which showed every crack, waver, and weakness. I learnt that to sound beautiful in a concert space, there must be many ugly hours in a damp room smoothing out every angle of the note.

This is why I have selected the closet for my practice space. I have a tall stool in my cubby, and lean my back against the shelves of clothes with despicable flute posture. Technically there is no reason for me not to play in my wet lounge room, to indulge in the sound now that I am no longer playing seriously. But I am a creature of habit and conviction, and I don’t want the lies of my lounge.

Our dog Wolfgang is extraordinarily musical in the howling way, and perhaps we shouldn’t have named him after such a prolific composer. His over powering accompaniment to even my tone exercises is another motivation to hide amongst my clothes in the dingy wardrobe.

This week I pulled my pure silver flute from its case, and in my dead nook, played some cardboard notes. I’d been asked to play Christmas Carols in Sunday’s service, and this required my lip muscles to remember. I invariably choose Paganini’s 24 Caprices for practice, and long notes. On Thursday night I headed for the two hour rehearsal and blew out some Silent Night.

The muscles in my shoulders and neck began to ache early in the rehearsal. They only ever began to kick up a fuss when I got chronic fatigue syndrome. They ache right up into my head, and produce this dull endless headache on the right side. When I came home, I got my heat pack, and Ben gave me a tough massage, and applied Chinese Medicine heat patches. The next day, the pain is established and unrelenting. There will be more massages, and more heat patches, and then there will be the actual service which will flare up the discomfort even more. And all the while there is a never ending headache.

I look at my flute, and I hear my Paganini, and I want to play for hours. My love has not faded, it cannot fade.

Ten minutes is enough to set my muscles into pain. My love hasn’t faded, but my body has rejected this occupation. I feel deep emotions in my practice room, whenever I pick up my instrument, as I try to find the peace in my skills slipping away from me. As I try to understand the purpose that those years of practice played in my life.

I think about the idea that it isn’t so much a flute, but a life tool which taught me and developed me. It cannot be lost to me, when it shaped me. Perhaps it was the thing that taught me that slow, often depressing plodding is the only and best way forward. From dull repetition and dry days can come the most beautiful things.  

someone on my porch

I was feeling blue going on grey with despair today, and prior.

I began an ineffective inspirational pep talk about how much I have to be thankful for. In a mind as emotionally limited as mine, all I could think was, “Yes. But it’s hard to appreciate all these things when you feel this ill.”

Only two words explain the physical problem: endless poison. The common cold which comes knocking to all each Winter, banged on my door in March and has not departed except for rare half-day trips.

So then, keep plodding. Life goes on.

And life is going on, but in such a painful manner that I dread its continuance. I wake with my red throat, pudgy tonsils, eggy glands, and I sleep with them. I carry leaden fatigue with me for as many hours as I am awake, and then repeat and repeat and repeat. I feel like every vein is infected with this nasty achey poison. I find myself longing for ‘just one day off,’ but I know it would never satisfy.

   

At some point, my mind became sad too.

We scour the internet for a specialist, a clinic, a somebody who knows something about endless poison. Last year, and the year before, my medics exhausted their virus ideas. Leaden and lifeless, I remember how we hoped this year of stability would be the environmental answer to the problem.

Wolfie barks furiously at something outside, and the something happens to be someone on my porch holding a bouquet of flowers.

It's for me! The angel someone didn't know that I was feeling this way, but knew that constant sickness can bring on misery. Over and over, something has come when I feel most crushed. I put the bloom in a vase with water, and dry my wet cheeks, and keep thinking that it is providence. What else could it be? 

  

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.”

grief

picture source

 

i lie on the couch for the hundredth day

the flat is so silent, so still, so alone.

my heart feels this grief it cannot say...

i wish for a voice and i wait by my phone.

how many years will this illness linger on?

i hoped it’d be two, but it’s already three,

i wonder if sobbing would make it be gone.

i want to feel well, live a life pain free.

i long to study, to walk out that door...

and not return home till 6 pm.

 then flop on the couch, and not be sore,

and spend the evening with energy spare.

i have a good week, and i dare to hope,

then a rough patch which knocks back me down.

sometimes i feel i cannot cope -

in this storm, in this black, i might drown.

i used to be strong – to study, to work

but now i can barely remember those days...

my whole world has changed, greyness lurks,

and i feel this sorrow as my body decays.

why was it me? and will i get better?

and how do i keep plodding along?

i wish You would tell me, write me a letter.

i struggle to smile, to laugh, sing a song.

but there is a glimmer amid the pain...

that helps me strive to dance in this rain.

this life is a moment compared to the next.

This is my sickness song. It's worth the listen.

praise you in this storm 

by Casting Crowns

me and my brain

I’m in a dream- like state today. Last night I was still awake at 3 am, pleading with my mind to quiet itself and let me doze off. The night before I was begging my migraine to respond to the ibuprofen and paracetamol I had given it. The hours passed by so very slowly, and I grew tired of the music that played over and over in my head while my fingers played the tune on my imaginary keyboard. “Stop. Okay, imagine a beautiful field with yellow and mauve flowers covering it...you’re lying there, feel the sun on your body and let your muscles release”......Part way through this relaxation exercise, there it was again: that piece of music I had listened to over a hundred times already since hopping into bed. Please! I’m just asking for a vacant mind, why is this not possible? My fingers are busy playing the tune again without me realising, and I feel myself become frustrated. I stop them, and enjoy a second’s peace. Barely a thought hangs in my mind, and then in the blurry background I hear the strains of the music....and a conversation I’m weary of re-visiting. I’m infuriated. How many hours do I have to play this game of stopping the ceaseless noise inside me, to have it automatically restart seconds later? I wish I had some kind of control over my mind so that I could stop losing this battle. Sprinkled among these thoughts are fears for the following day – how will I manage on so little sleep? I tell myself that rest is good for me and yet I barely believe the words I have just pronounced. 

I could go some help right now...

This mental battle is one of the reasons I decided to go on anti-depressants...alongside panic attacks, depression and generally feeling overwhelmed. It was only in the past 6 months that I started to open myself up to the possibility of going on medication. Before, I thought I could manage the mental side of life with counseling alone, learning strategies to deal with myself – my post illness self. I feel that I was fresh and optimistic about how much I could improve without needing drugs. I didn’t want drugs. I didn’t want to be dependent on a medication to alter the chemicals in my brain for me to be OK. I saw that as a cop out.

Something changed, gradually. I became wearied by my mind and the toll it was having on me. I desire relief, even just a small reprieve from the fears and obsessive thoughts. Some peace, to simplify my life, to give me a chance at coping. Before I thought that learning a deep breathing technique for when I started hyperventilating was help enough, but now I am dreaming of not hyperventilating in the first place...not crying so often....even having a still mind from time to time. I know the meds won’t eliminate these things, but just a reduction in intensity would be good enough for me, especially as I work out the core issues with my psych.

I have started a new drug because the last one had side effects I wasn’t so keen on. The following warning was on the information sheet:

Persons taking this medication may be more likely to think about killing themselves or actually trying to do so, especially when first started or the dose is changed.

Admittedly it was not what I expected to see on an anti-depressant. Surely it was supposed to do the opposite?! But fear not, I haven’t experienced any such thoughts. I’m just listening to Bach’s Brandenburg Concerto’s and drinking English breakfast tea – and I find it hard to believe I could feel suicidal while so pleasantly occupied. The fact that even that warning and all the possible side effects didn’t put me off show me that I really am quite desperate for some help. And so now I must just wait and pray that this one is a good match for me. I hope we’ll do very well together!

gray

Dear Diary,

I am going to write to you, as you’re an inanimate object and I can’t possibly burden you with negativity. I am so blah that my world has turned into shades of gray with splotches of black. Monotony, painful and eternal, is all that I can see for the future. I wake up, but everything I see fills me with a dread which eventually strangles me and kidnaps me of my ability to do a thing. The pot plant needs watering, the pets cages need attention, the kitchen is filthy, there’s a mound of clothes for washing, an email to write, a flute incessantly demanding I play it...or else, and a doctor’s stern order to exercise every day. I moan because paralysis is kicking in. I am incapacitated in just a few seconds. Sitting in a dark room crying seems the only option, everything else requires something which I don’t have. I have lost my drive, my personality...every time I walk past something I’ve left undone, it glares at me with condemnation: YOU LAZY WOMAN, YOU HAVEN’T DONE ANYTHING TODAY. I cry because the words are so stern, so cutting, so truthful. I go back to my couch, and sit there numbing the pain with the soothing process of pulling out my hair...even the consequences of bladness don’t equate when compared to the temporary joy of repetitively, obsessively extracting each root.

Ben arrives home from work; surely this will cheer me up. It turns out to be my cue for some more tears.

“Think about the things you do enjoy doing...”

 “I don’t enjoy anything. It’s all awful, it’s so gray.”

“No Dee, think about what you used to enjoy.”

“I don’t know....”

“Drinking tea, and shopping and reading and walking – lots of things”

“Mmmm. I guess so. But I don’t feel like doing any of those things.”

“Come on, let’s go for a walk.”

“Nooo, I can’t. I don’t want to.” I am neurotic to the enth degree. I feel I will have a tantrum, simply burst because of what-ever it is trying to get out.

Eventually I am convinced to sit on the couch with my blanket, with some Mozart playing, and Ben close by me. It helps. Sometime later I crack my first weak smile. Some hope is returning to my little world, the glimmer that not every day is going to be today. It’s like a tiny candle being lit deep down in me, and though it wavers, I know I’m alive and my personality is just on holiday. It will return.

I’ve started seeing a Psychiatrist and despite that stigma-oozing word alarming me to some degree, I feel ready for this. He wasn't in a white cloak, and we didn't sit in a barred room. I long to learn to manage my personality – to learn to relax, to be less obsessive, less perfectionist, less stressed....and in so doing, pacify my anxiety. It would save me vast amounts of energy. I told him that I used to think I was insane, when I was a little girl and pulled out my hair. But he doesn’t think I’m crazy, which is a comfort. Neither does Ben. So maybe I'm not.

Anyway, enough rambling. I'll write next time I see gray.

Yours truly,

D

dark days

I woke up this morning and from turning over a couple of times and opening my eyes, I didn’t think it was going to be bad day (I used to be able to tell).  Anyway, I couldn’t afford to be sick today – I had an Alexander Technique lesson to attend, I needed to work out on the gym, practice my flute, go to Vic Roads to change my name...but my body had other plans. It told me quite decisively after my workout that I would not be going into the city but would instead be having a restful, home day. Personally, I’d like 24 hours notice. Anyway, it turns out that I am enjoying my unplanned day because I get to lie in pajamas watching The Princess Diaries, ponder what it’s like to be royalty and eat nuts. One day on the couch every now and then doesn’t get me too down. It was a very different story when every single day was like today, but so much worse.

My best friend gave me a scented diary with a teddy bear on the front when I turned eight, and so I began recording my life, and have done so ever since. This year, I’ve filled only a few pages in my diary, and most of these entries have been written when I’ve been depressed and deeply saddened from being so sick. I think back on the first 7 months of this year as the ‘dark days’. Some of the time I could clearly see the glimmer of hope and feel real joy; I knew it wasn’t going to last forever, and was happening for a reason. But knowing something and feeling it are two very different things. A lot of the time, it was like walking along in a pitch black tunnel. No idea when it would end and missing the sunshine so very much.

Below are some blah diary entries...

27^th February, 2011

Tomorrow Ben goes back to uni, and work e.t.c. And I’m so scared about being at home, sick...missing my family, flute, friends, energy....and so lonely. And I fully know that studying would be worse and is now impossible for me, but I grieve for it! All my friends are going back to uni. I wish I knew why it was me and not someone else. I just am so sad, I feel like I should be all strong and brave, but I’m not brave. I’m a miserable puff of wind.

24^th March, 2011

Ben and I both cried this afternoon as we come to terms with how different life has to be with CFS. Even doing one thing a day, I am barely coping. Life, just doing simple things like showering, doing the dishes, going for a walk, seeing my family – it just exhausts me and I have to go to bed. It’s not so much the tiredness, but all the other symptoms.

12^th May, 2011

I really am not doing well with my diary this year! Lying at home sick really doesn’t inspire me to preserve the events of life...I used to have exciting things to record, events, concerts, happy days. Life is something of a drab grey monotone at the moment. Dull. Hope less, and now sort of dreamless. I’ve been really unwell. Can’t sit or stand without nearly fainting. Bored as hell. But I’m not going to write about all that.

 It’s not surprising that people with long-term illness struggle with blahness...in my worst days, this is what life was like:

I used to wake up at 9.30 am. I tried to sleep in as long as possible, to pass as much of the day as possible – unconscious was the way to go. Ben had left for university or work a couple of hours earlier so the house was dead silent. I would go to the kitchen and have some breakfast – and then take the time to swallow a handful of large pills (which sometimes got stuck down my petite throat, and burned ferociously). Then it was time for my shower. Lifting my hands to wash my long hair had the effect of making me dizzy and faint, so I had to do this squatting or sitting. Unfortunately, the shower was so exhausting that I would put my pajamas back on, and climb back into bed, utterly wasted. At about 12.00 pm I felt ready to get up, and would nearly faint as I hopped out of bed. Now I could either type an email, listen to an audio book, put on the washing, go for a short stroll....something. But in an hour or so it would only be 2 pm. Still three long hours till I got to see a human being and use my vocal cords for the first time that day. I would be beginning to get bored, and really blah. I listened to CDs, I bought paints and I tried knitting (in those dark days I couldn’t read because my eyes couldn’t focus on the words, or watch DVDs) but the latter two were boring. I’m an atrocious painter, and can only really do pictures of badly proportioned ballerinas and toddler landscapes, and knitting is as boring as counting sheep. So when Ben arrived home at 5 pm, I had lost my entire personality, and didn’t know whether to laugh or cry. I wanted to be joyful that I’d made it through another lonely day and he was home with me and would now care for me, but I wanted to cry because it had been so awful and I’d held myself together for so long. And there was that terrible reality that when we went to bed at 9 pm, I would fall asleep for all those hours I could be spending with him, and awake to an empty bed and another long day.