Dear ME/CFS

Dear Chronic Fatigue Syndrome,

If you were going to come back for a visit, I would expect it to be now. I've just moved house, and city. I've been sleeping badly and working hard and using cleaning chemicals. Just pop in and give me some red swollen eczema, throbbing migraines, crippling stomach pains, paralyzing muscles weakness, black dizziness....why not? I mean, now would be such a logical time for you to come over and remind me of your existence - if you even do exist anymore. Do you? Do you?

With confusion and surprise,

Danielle

I just moved house on the weekend to a peaceful place named Portland (more about that soon). But I don't have pain in my body from that stressor. I just feel tired, really really tired.

Moving house is said to be one of the more stressful events in life. They put it along side getting married, getting divorced, starting a job, losing a job, having a baby, losing a family member...the books say that if you have a few too many of these stressful events in your life, the chances of you getting a stress related illness are a lot higher. Our bodies hate this kind of thing en masse. They put up their hands and surrender. 

Four years have passed since I went over the edge. There were plenty of triggers to give me that final push.

During those years of illness, I married Ben (two years ago today), moved city, moved house every summer, and started and ended university due to chronic illness.

That's a lot of stressful life events - and the crazily beautiful thing is that I have come through them all, in better health than I began, both mentally and physically! This life journey is rather fascinating, the way it takes twists and turns of the most surprising nature. Sometimes they are so tough, and sometimes they are delightful - but all of them make the journey.

the beach five minutes from my house

Anyway, whether CFS is coming to stay or not, I am embarking on four months of rejuvenation. The very first thing I did in Portland was go to the gym and get a membership. I was in the car thinking it a little sad that the first thing I had to do was get to the gym to deal with my POTS, but then on reflection I realized how privileged I was to be able to do something to sustain my health.

So it will be exercise, flute practice, sewing, hanging out with my man on the weekends, and letting this stress-prone body soak up peace, and quiet. If all stays well on the health front for many more months, maybe I'll decide to take something on, something other than healing?

wonder

I was looking over some of my blogs from 2012, and one stood out to me.

pessimism & hope 

"I would love to begin a post one day by writing something like this:

Feeling well, and coping with life at the moment.

Apparently it is possible to feel that you are coping with life, I’ve heard of people who do, but I don’t think I’ve felt like that for a solid three years."

And because I would love to begin a post like and for it to be true, I will write it now.

Feeling well, and coping with life at the moment.

There, I said it. I meant it, I felt it.

If I couldn’t put into words how great the suffering of chronic illness feels, I can even less put into words the inexpressible amazement and joy of returning to health when you didn’t expect you would. There are simply not words in our vocabulary which do justice to these feelings. ‘Amazed’ has been so overused in such inappropriate circumstances that it falls far short.'Flabbergasted’ is getting closer but seems to imply an unsettled amazement – and quite frankly, I feel blissfully content. 

It is inarticulatable, and I suppose that is a beautiful thing. Perhaps only common things can be fully expressed in words. After all, there are so many things in life which can’t quite be captured or comprehended because of the huge complexity of our minds and bodies. When words fail, I think that images and music can often reach a little closer. 

Thomas Tallis lived a long time before us, in the 1500’s. His music is heart wrenchingly glorious and this piece seems to capture the unspeakable. This peice says ‘wonder’ to me. 

Spem in Alium

Wishing you a year filled with beautiful moments, smiles, increasing courage, comfort, relationships & well days.

Danielle x

Nothing is permanent in this wicked world, not even our troubles - Charlie Chaplin

given

 

So much has been given to me; I have no time to ponder over that which has been denied. 

 - Helen Keller

these words are a treasure of truth. i want to say this more often.

when i read that i think of that obscure baby who was delivered without a midwife by an unmarried woman in straw and cow poo, who grew up and made it possible for me to have peace with my creator, and a future with him. its almost too big to wrap my mind around.


then i think about my husband and family and dog and gifts and health and home and country and food and education...and it suppresses the complaints and miseries which are a part of life on earth. i have received much, so very very much, and i don't want to forget that, even when days are tough and health is bad.


be joyful this christmas for all that's been given.

nights

i am grateful for nights out.

madame brussels at night

i used to take them for granted. until i had to go to sleep at 9 pm because i was suffering.

on friday night we spontaneously decided to go into the city to look at the christmas lights projected on historic buildings...we left our little apartment at 9 pm. i wanted to cry for joy that i wasn't lying on my bed with ben helping me struggle into my pajamas and encouraging me to swallow my mass of bedtime pills. going out at dark? it seemed so crazily beautifully fun!

last night after ben's graduation we didn't rush home to put a migrained mess of a wife into bed. we left the ceremony venue after 10.30 pm and walked in the heat, in my heels, to Madame Brussels to linger a little longer over our celebration. sitting there, it seemed overwhelming that ben had in his hand a degree, and i sat by his side drinking, wide awake, well. it seemed like we were too blessed.

and what about the day after? was it spent in bed? no. that's what is even more deliciously incredible. i am crying as i write because i am so utterly blessed to be alive and pain free.

this too shall pass

This morning in the shower I set myself the challenge not to think or worry about the future, and not to think or worry about the past - but to just focus my mind completely on each simple task.

After a horrible attack of anxiety last night, I decided to fight the beast inside me with any tool I have in my bag, to reign back in the control that Worry gained. He is so all pervasive and crafty that he just sneaks right on in and sets up inside me, and then I have to grab my weapons and poke him out before he destroys me.

Within a second, my mind had wandered far, far away from shampoo and conditioner.

" Must check what time my appointment is - argh no, just washing my hair now, enjoying the priviledge of lifting my arms up without fainting.....
 Tire Wolfgang out with long walk before gradation - please be peaceful mind....
 Start to pack up house, where to start, in the kitchen? - quiet, just today, just this one minute....
 Call carpet cleaning company, will they be able to get the stains out?! - be still oh my soul....
 Cook food for breakup party, but what to make? - do not worry about tomorrow, for each day has enough trouble of it's own...."

It was a furious race of crazed anxious me fighting with calm, good perspective me. I simply couldn't stay still inside, in the bathroom, in the moment. There was violence in my brain, but I'd rather be fighting than succumbing.

Yesterday we got the confirmation that Ben will be working at Geelong Hospital next year! We are so thankful for his job, so thankful for my improvement and a million other things - I wish we could sit and drink in the joy of it, but now we have to keep working because we have to move down there before he starts in a few weeks. Apart from the inevitable chaos of shifting, and house hunting, and applying for rentals...there are chinese doctor, psychiatrist, specialist and GP appointments to attend, christmas break ups, friends to farewell, Ben's graduation, and a host of other things.

I'm scared that with so much pressure and activity my much improved health will go backwards. I'm scared that it's too fragile to survive these serious life changes in one piece. And I'm horrified to find myself incredibly anxious, struggling to breath, and dying to pull out my hair.

Anyway, I am not pulling out my hair (because being bald adds even more problems, trust me) and I am praying and breathing and deciding to take it one little minute at a time because,

"Who of you by worrying can add a single hour to his life?"

"Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own."

This is not new wisdom, it's so timeless, so wise, so damn hard to do. I am so finite and fragile that to think ahead more than a day is too much - so that's why I will not let Worry cosy up inside me, harming my mind and body and soul.

This, too, shall pass.
How those words resonate in my soul, now that I feel in my body the truth of them.


"You keep in perfect peace him whose heart is stayed on you because he trusts in you." Isaiah 26:3

loving myself

For years I have grappled with the concept of loving myself. 

I baulked at people saying, “I just need some me-time”, or telling me to be “kind to myself”. I have always disliked ads on TV saying that you deserve this or that, “because you’re worth it”. These concepts didn’t sit with me at all, because they seemed so self indulgent, so selfish, selfish, selfish. It was the kind of post modern I didn’t like. My self-critical nature and strong protestant work ethic struggled to view this kind of self inclusiveness as right or wise. It made me squirm inside. I ridiculed these statements. Yet the longer I was sick, the more I bumped into these phrases; not only in the media, but also from the people I looked up to and respected the most. 

Everywhere I went, I was told that learning to ‘love myself’ was one of the first steps to healing. Really?!

An inspirational woman who I really love told me many times to be kind to myself, and understanding of where I am right now. 

After doing something courageous, my psychiatrist asked me how I had rewarded myself. I avoided the question by saying that I was glad I’d had the courage to do this hard thing – because I squirmed with the idea of ‘rewarding myself’.  He picked up my avoidance and pressed me to begin to acknowledge myself and really celebrate when I achieve something. 

I was more comfortable with words like self discipline and self control. Surely that is the best way to deal with self? By rallying oneself to push on, to be strong, to be better, never give in. (all dangerous things in the case of chronic illness). 

In one session with my psych, he asked me what I thought the most important thing is. I replied that it was to love God and love others. 

He looked at me in shock. “No! You’ve left out something absolutely critical. Come on! You should know this!”

I was totally blank. What on earth had I missed out?

Love your neighbour, AS YOURSELF.

And then it started to click, as we talked it over. How could I possibly love other people or be a role model, if I didn’t know how to love myself? If was willing to be forgiving, and kind, and understanding of others, how hypocritical to be a self tyrant in my own life. If you don’t care for yourself in such a way that you are in decent health, and a good mental state, you can’t even begin to give to other people. You can’t always say ‘yes’ to people and events because if you do, you might burn out. Who said that everyone else is more important than you? Your needs are equal to theirs. It’s not selfish, it’s self inclusive.

Self inclusive.

And how is this the first step to health? Well, it’s a chain reaction. If you are caring for yourself, giving yourself time to exercise and eat well, resting after exertion, doing things every day that you enjoy e.t.c. you will cultivate a positive frame of mind. Research has again and again proven that being positive and happy gives the body the best chance to harness its resources to heal, to function at its optimum.

So three months ago, I decided to be more self inclusive than I have been in the past. I decided that I would everyday try to do things which I love, things which are nurturing to my mind and body so that it has a good chance of healing. For me, it’s been taking my dog to the park and watching him frolic while I let the Vitamin D soak into my skin. I took days off flute when I didn’t feel like practicing. I let myself drink chai tea with honey in it. I rewarded myself for not pulling out my hair. I stopped feeling bad for skipping events when I was unwell. I went to yoga every week. I started to filter out all those awful cruel things I chant to myself.

It’s not self indulgent. It’s about being gracious, forgiving, understanding and kind, to yourself – while still challenging yourself and changing. 

And if my improved health is anything to go by, my body likes it too.