do you know that skinny sick girl?

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I don’t know how people think and talk about me, mercifully.

Perhaps I am ‘the sick girl with CFS’ in their minds, or ‘the hypochondriac’ to the less convinced. As a girl who was serious about ballet, I was ‘the dancer’ but at my ballet school where all were dancers, they thought of me as ‘the home-schooled girl’ or ‘the kiwi’. I’m glad it wasn’t ‘the acne face’ which would have been equally apt for this period in my life. When I spent all my time studying the flute, I was the musician and I think I defined myself the same way. Perhaps the field to which a person devotes the majority of their time, or an uncommon background or physical feature are the means by which we generally distinguish one person from another. Whatever characteristic stands out from the rest of the flock makes for an easy distinction and label. It takes year to get to know someone, and hours to give an accurate description of that person, so naturally we need to simplify all that complexity and boil it down to a simple key point. A simple key point which can never do anyone justice.

Be our label flattering or insulting, we run the risk of limiting ourselves if we choose to live by it. 

Whatever it is, it’s just the tiniest glimpse of who we are, and sometimes it’s not even that, it’s an incorrect perception.

Some days I lie on that detestable olive couch and think,

“Yes, I am the sick girl. I spend all my time being a patient, and it’s what separates me from everyone else. All I am is a frail, incapacitated woman with dreams in shreds and a hopeless future.”

And believing myself solely a useless body, I don’t strive to rise above, or challenge myself, or grow. I curl up in the invalid’s box, squashed by my inaccurate and simplistic labelling. I literally consider myself ‘in valid’, and somehow a burdensome blot on society. 

That’s what it means to be defined by my illness. 

Watching the Paralympics, I am inspired by the disabled bodies, and the men and women inside those bodies. They must have all hit that point in their lives where they thought,

“Who am I? A paraplegic, or a talented individual, who has a passion for sport, for advocating for injured people, who loves my partner, who gets a thrill from taking great photos at the beach, who has no legs...”

They put their disability low down on the list of key facts about themselves. They choose not to be defined by that detail. They use what could have been their most limiting weakness to be their greatest strength; they challenge themselves to make a difference despite their circumstances.

Inside, I am exactly the same as I was before I became ill, the real part of me remains intact and continues to grow. I laugh when I trip over, dance in front of the mirror, feel up lifted when I play classical music, cannot put down Jane Austen, wake up thinking of things I want to make, love to talk with people about more than the weather, wish to write a book which people actually read or earn a living from being an artist, want to be an awesome mum who gives great hugs, try to use my gifts to make this world a tiny bit more beautiful or bearable, want to do it all for my creator. 

P.s. I also have CFS. Just a tiny yet formative detail I thought I should add in there.

turn up the wellness

You don’t have to be scientific or studious to be thrilled by Epigenetics.You just have to love the possibility of change.

This nine minute clip explains it far better than I ever could, its exciting news:

Epigenetics 

If you’re more of a reader, the article below is great too:

Epigenetics, Time Magazine

So I was trying to understand the implications- for my own life. There are genes in my body which are speaking too loudly, the genes responsible for my illness. They must have been switched on or turned up at some stage, which means that they can also be turned down. If what I do, and my perceptions can make the epigenes control the ‘volume’ of my genes, that means my actions now, in this stage of my illness can lead to recovery. 

One scientist said that when someone goes into remission from cancer it is often from a great change in perspective on life and diet, resulting in the epigene turning up the disease preventing genes, and turning down the disease promoting genes.

It means that medicine doesn’t necessarily have to discover a cure for me to recover, my body could recover on its own! 
  
 I wonder if this is why CFS seems to mysteriously leave after 5 or 20 years, without reference to the latest treatment option tried – it goes because what the patient has been doing in making life manageable and holistic has caused the epigenes to turn up the health promoting genes?

I’m seriously keen to turn on the disease preventing genes.

So when Chinese Medicine herbalists talk about positive energy flowing through the body, maybe they are onto something absolutely critical, the stuff which changes the ‘volume’ of certain genes. Maybe diet, and exercise, and keeping the brain active, and loving others and all those factors of a healthy life are turning up the good genes through epigenetics. Lying around in bed, feeling rottenly depressed and bitter at life’s ‘cruel blow’ and eating processed rubbish seems to be the ultimate strategy to ensure illness remains, while learning positivity and changing your lifestyle might be the catalyst for the illness to go. Even if the illness remains, you’re going to be a far better influence on the world if you’re spreading positivity.

In western medicine we have separated the mind from the body for too long – we have mental illness, and physical illness, and we don’t talk very much about the union between mind and body. But they are intrinsically linked. What we do in our lives affects which genes are most prominent and what we believe affects what we do.  

This is a huge inspiration to make healthy mind body choices – not just for us, but for our kids because they will be influenced by our choices.

I can choose to eat healthily, drink purified water, enjoy the sunshine, exercise often, be spontaneous, rest when I feel tired, laugh with friends, stimulate my brain everyday with new learning, and fight off stress.  I’d never have learnt about how rich life can be if I’d never become very sick, and I probably wouldn’t undo this if I could go back in time – what a chance to take time out and learn to live!

' you have hot liver '

Today I saw Dr. Heng Seng Lim for the first time, the Chinese herbalist. 

We knocked on the door of the dark brick home, and I was instantly glad that I had Ben with me because it had a dingy, smoky and foreign feel inside. Depsite his gracious welcome, I felt decidedly outside my comfort zone. In his office, we took a seat and filled in my details at the top of a card. Lower down he began to write notes about me – in chinese characters. Unfortunately I have a terrible time with foreign accents, and I could barely understand one word he uttered.

“Peewud?” He asked first.

“Ah, what do you mean?” I replied, bamboozled.

“Peewud. Every month.”

Ben clicked and said ,’period’.

It was like that for most of the appointment, as I regularly said ‘pardon’ and looked at Ben for some aid.

He took hold of my wrist and held it in his gnarly hands for a very long time, while his loud clock ticked in my ears. I took the time to observe his certificates and awards and reconvince myself that he was not a quack. It wasn’t the pulse he had his finger on, but further over. Sometimes it felt like he was touching a nerve, but really I had not the faintest idea of what he was ascertaining from this examination. Next he moved to my back and seemed to magically palpate my many knots. My tongue and eyes were also examined, and I was grateful that he didn’t want to do anything else as I have never been a fan of physical examinations.

He noted down my tome of symptoms – well I think he did, except I didn’t know what he was writing. Finally with a big grin on his face he said,

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“You have hot liver. I give you pills. You take everyday for ten days, and then you be better. If no be help, I give you stronger.”

That said, he went to get the concoctions and instructed me to seven of the little round tablets three times a day. I clarified that he really did mean 21 pills per day, as my western mind was slightly surprised at so much pill popping. I had understood him correctly. We booked my return visit for 10 days, and he bowed us out the door. 

On the drive home we threw around terms like, ‘simplistic’, ‘different to western’, ‘interesting’, ‘an experiment’ and ‘we’ll see’.  We understood nothing from either the visit or the explanation he gave of my illness, but we have been to enough doctors who seem to explain it well but really don’t know how to help, that we are open to anything, any culture, any suggested cure. So long as he has some idea of what he’s doing, I’m happy. I am not holding my breath for the expected recovery in three months, but Dr. Lim, I will be over the moon if you prove me wrong. 

not making the bed

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Ben and I were putting some clothes away in the bedroom. To be more honest, we were working through a mountain of my items, strewn on my half of the room. A week’s worth of clothes dumping.

“Remember when we used to make the bed?” Ben said.

“I remember that. I spent every drop of energy of house stuff.”

“You do so much less now, it’s so healthy. You spend your energy on better things.”

I recall the days of making our bed – because that’s what respectable people do, because that what my parents taught me, because that’s what good wives do...

And then it seemed so ridiculous to make it and hop right back in 2 hours later. Eventually I stopped altogether. Now I only ever sleep on the couch during the day, but I still don’t make the bed. My strength is a grain of rice; I’ve got to use it wisely.

There isn’t a right way to do most things – it sounds decidedly post modern, but really, I think in most areas it ought to be, ‘what works for me,’ or ‘what’s wisest in my situation.’ I used to do things because that was the way I’d seen them done, therefore it was right and preferable. Then I realised that my life was completely changing and shifting, and the old ways no longer worked. I grasped at the past, precariously attempting to continue along as I always had, despite my altered state.

I’m a copy cat, conformist, comparer. I am prone to peeking at someone else’s way of doing things and replicating it, irrespective of whether or not it is best for my life, my situation. I fear walking through uncleared bracken, uncomfortable in my own ability to navigate, unsure even of what I think without another to validate my actions.

“This is the way I’ve always lived” may work just fine for a long time, but I have a strong inkling that habit, tradition and mindless living is limiting. Thoughtful decisions make life smoother.

Now I cancel things when I feel unwell – I used to push through with my protestant work ethic. I wash when Ben and I have no undies left, and I choose flute practice and gym over dusting and mopping. We don’t have people over much, and we sometimes eat just eggs for tea, with tomato sauce. At first, I raged inside. I needed to do everything ‘right’, the way I saw others doing it. But now it’s excites me how many things can be altered to accommodate this stage of life. 

Life will keep changing. One day I’ll have strength perhaps, and I’ll have to decide what to do with it – return to study, change direction, start a family? And if we have babies, maybe I won’t have the energy to breastfeed, and we’ll do that differently. As life changes, the things which work for us will change too. Every time we turn a corner, we can sit down and decide what will make the next stretch manageable and enjoyable, and without peering over anyone else’s shoulder, we can implement our strategies. 

in his shoes

What is it like to marry a sick girl?

This is the journey that Ben has undertaken with me, every battle I’ve been fighting has been fought with him, and so in some ways we are both ‘sick’ because we both share in it absolutely. We vowed to love each other on the bad days, and that promise has been tested every week! He sacrifices so much in his love for me – he gives to me even though he won’t receive as much back. He could have waited for a girl who had a job, could cook him an evening meal, and always had energy for exploring life. 

It’s beautiful when love is less about self and more about giving. That’s the kind of love that lasts beyond the first giddying weeks into the decades of life, the kind of love that has sustained those amazing wrinkled couples holding hands as they hobble along at eighty. Ben inspires me. Real love is gritty, tough, and sacrificial – but it’s also lasting and deep.

What were your fears about committing to someone chronically ill, and what made you go ahead anyway?

Yes, my fears where exactly that. Could I commit to Dee for the rest of my life even if that meant I was committing to caring for someone very sick for the rest of my life? I knew enough about chronic fatigue at that point to know that Dee may never get better. She may get worse. Could I be there for her and care for her every day? Could I accept a very different life to what I had imagined my adult life to look like? I knew if the answer to those questions was “No,” then I could not in good conscience marry Dee. But I love her. I can’t tell you exactly how it happened but about three or four months before we got engaged those fears fell away and the answer to all my questions was a relieved “Yes”. I knew it might not be easy but I loved Dee and I wanted to spend the rest of my life with her, regardless of what that meant. A lot of people might face struggles like this later on in life and marriage. I think we were blessed to face them before. It was a proving ground. We knew what we were in for and we wanted to commit to each other all the same. There is an amazing amount of security and comfort in that fact.

What has been the hardest/most frustrating aspect to cope with?

When we’re both down. That is definitely the hardest time. It’s very hard to care for or cheer someone up when life has got you pretty down as well.

What have you learnt through this journey?

Lots – lots about myself, about priorities, and learning to love others. One of the big things though, one that has helped us manage through this difficult time is this: You have options. You can make changes. Your life doesn’t have to look like everyone else’s. You just have to have the courage to live a life that actually works for you rather than struggle to meet some ideal that society places on you.

How can your friends best support you as a carer and partner?

I think by accommodating us. Our life does look very different out of necessity. Things that everyone else considers normal or routine are a stretch for us or downright impossible. For someone to ask how they could make coming over or catching up easier means a lot. When people get the message that we can’t come over regularly or be somewhere every week it is very encouraging and a bit of a relief to be honest.

Are there any positives?

Absolutely. Like I’ve said I’ve learnt lots and we’ve learnt lots about each other too through this. We’ve seen the whole spectrum and I know what makes Dee tick, what helps, what doesn’t. We’ve grown both individually and closer together. I can say with absolute certainty that our marriage would not be as strong were it not for this.

We have also been able of laugh and have fun even when times are hard.

How does the unknown future of her health make you feel?

Honestly I don’t think about it. In one way everything is unknown so Dee's health is no more unknown than anything else. I could get hit by a bus, become a paraplegic, lose my job, or lose my sight and Dee would stick by me, I know. Life is unknown but God is sovereign.

Would you do it again, knowing how challenging it is?

 Several times over.

Ben is nearly finished his Radiography degree – he looks forward to working in a hospital next year and saying goodbye to lectures and essays. When he’s not studying or working, he likes relax with his wife and dog, curl up with some Tolkien, or cook up a storm in the kitchen. 

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Eating left over salad at 4 am. Because that is the last scrap of food in the house. Wondering why I feel so nauseous, and why I have been awake all night? Feeling scared about tomorrow, which is actually today. Wondering if I will have to cancel arrangements because I’ll be feeling unwell? Worrying that tomorrow night will be a repeat of tonight and my body will deteriorate. Praying that my brain will stop grinding over comments and fears and problems. Thinking how peaceful Ben looks as he sleeps. Grateful for him and for our beautiful marriage, and hoping that my illness doesn’t burn him out. Knowing that no one ever told me life would be easy, but still wishing it, over and over. Questioning how long I will live under the shadow of sickness yet knowing it’s pointless to wonder. Wanting to cry for relief from internal tension, but feeling numb. Feeling like a little child masquerading as an adult and wanting to be carried away to some safe place. Dreaming of a long holiday, never returning. Tired from life at twenty one, and saying already ‘I have no pleasure in these days’. Glad of the new mercies that will be given for the day, just enough at just the right time to carry on. One minute at a time.