Tag Archives: friendships

Two way relationships. The ones that require me to not only listen and protect someone else’s needs, but in return be honest, open up about my own feelings and allow someone else to protect and care for me.

In my Head

I spend a lot of time in my head.

Observing, synthesising, debating and concluding. All by myself. All in my head.

I’ve always done it. I don’t know how not to do it.

I put it down to being an only child, where there was no one else to share my thoughts, or the scenarios and debates I created in my head. My parents were hard working migrants, trying to put food on the table and provide their first and only born with the education and opportunity to achieve and succeed.

I’m sure as a creative child, those thoughts would have been fanciful and self-deluded. After all, there was no one to point out the flaw in my plan for schoolyard domination. I developed resilience via a steep learning curve.

Adolescence did not change my modus operandi, particularly as my parents went through an ugly divorce in my pre-teen years. The arguments, the late night whispering and the removal of my dad’s clothing into 40L plastic bags were all observed, recorded and filed away…for future reference.

My young brain recorded that trust and intimate relationships are fraught with danger.

Now as an adult, happily ensconced in an intimate relationship that looks nothing like my parents’ or anything else I had witnessed or imagined, I still find myself spending quite some time in my head.

Observing, synthesising, debating and concluding.

And in dealing with undefined auto-immune dis-eases, I find that I spend more time retreating, in my head, wondering how did it all go so wrong? What can I do to stop it, reverse it, halt its progress?

I’ve spent many hours googling down the rabbit warren, coming back more overwhelmed than clear. I’ve read books on neuro-plasticity finishing them with great hope that my brain can repair itself from the chronic fatigue short circuit and my short term memory will return.

I’ve scoured the latest journal articles on lupus research and the effectiveness of rituximab and the latest in immuno-suppressants. Hoping that pharmaceutical companies will add another drug option to the market, given that it’s been over 40 years since the last dedicated lupus drug.

I’ve struggled to find any information that could explain the importance of testosterone for females, and why my pituary gland is malfunctioning, without having to enrol in a degree in medicine. Although I suspect I have the first year of theory covered.

I even had my hopes raised when ABC’s Catalyst program, did a story on testosterone, but it was short lived as they chose to focus on middle aged men and menopausing woman. Because it appears that the sex lives of baby boomers, deserves more research and funding than those living with auto-immune disease.

I’ve fallen in and out of love with meditation, struggling to find a routine, a niche, a regular space in my day. Started drinking kefir daily, and once I got past the tangy and surprising effervescence of my coconut milk, my gut started to thank me immediately.

My yoga practice ebbed and flowed, largely due to the instability of my spine as the arthritis of my sacro-illiac joint decided to stand front and centre in 2014.

It started as a niggle, but ended with another red flag on my littered path.

The pain in the dimple of my left glute, my left knee giving way as I walk Franki to the café or try to manage the 45 stairs to freedom. The tingling in my left heel, the numbness in my hamstring.

Of the three episodes I’ve experienced in the second half of the year, I seem unable to acknowledge the symptoms until my back spasms, my hip locks and I can no longer turn my neck or lift my arm. Then the desperate call to the physio. As I’ve said before…I can be a slow learner.

And then the humility kicks in and I need to exit my head.

I ask my husband to wash my hair. I ask friends to walk a little slower. I ask Franki not to stop and sniff at every lamp post, perhaps every third one instead.

I tell my yoga teacher it’s a non-pretzel day, I can only do a 30 minute session and ask “can we do some breathing and meditation to complete the hour?”

And I ask strangers to help me untie Franki from the café chair leg as the Fisio-taped back and shoulders make my movements laboured as if my life has been catapulted into slow motion.

It’s those moments where I realise I can’t spend all that time in my head. That in fact, my life can be made easier by just opening the doors and sharing, asking and letting go.

Yes, 2014 has been a challenge. Not because my prognosis has become any worse, and not because the treatments have been wholly unsuccessful. Like everything in life, it has its success and its shortfalls.

I’ve experimented, struggled, rejigged and reworked.

Always in my head. But slowly, with others.

And with only hours left in 2014, I can only hope that I can approach the next 365 days with a little less “in my head” and a little more “in the marinating bowl” with others.

I’ll share my puzzle pieces, and ask for a different perspective. I’ll try them again, this time in a different place or space, sometimes by myself but also with others.

And I’ll remind myself that just as my parents tried valiantly, so will I.

Because life doesn’t always play out the way it does in your head.


Be Gentle

This is my catchphrase to Franki.

Be Gentle…there’s no need to snap the food of my hand.

Be Gentle…that little kid just wants to pat you.

Be Gentle…as the rough and tumble play escalates.

I’m sure Franki has no idea what those words mean. Perhaps it’s the intonation of my voice. An alarm that something isn’t quite right, but an indication to tone the pace, enthusiasm and excitement back (a little).


Curious but gentle

I notice that it’s not only Franki that is learning when and how to be gentle…So am I.

Be Gentle, Deborah….that email doesn’t have to be answered immediately.

Be Gentle, Deborah…it’s not a race to prove you are a strong rider.

Be Gentle, Deborah…there are no prizes for who can hold a boat pose the longest.

As the last 18 months have been trying to show me, I need to learn to be more gentle…with myself, with others.

Living with an AI ravaged bucket, means that if I keep filling the bucket with non-gentle stuff, the bucket overfills rapidly, starts rusting at its seams. It’s unable to do its job…to simply hold. All the good stuff and the bad.

It’s not easy though, and I’ve stumbled several times. When I arrived back home from my honeymoon month in France, my bucket was looked like it had been through the baggage handlers routine. Dents, nicks and gashes I hadn’t recognised. I was indignant.

How did they get there? Who is responsible for this? That’s MY bucket!

When Mr Metamucil completed his 4th Ironman triathlon, I was so happy, relieved and proud. I was also so exhausted, I could feel each bone in my body and could count each and every fibre keeping me together.

It may sound ridiculous, I wasn’t the one who completed a 3.8km swim, 180km bike ride and a 42km run…but for me the adrenalin, the anticipation and the 4:30am start kicks my AI bucket to kingdom come.

And so I have to remind myself, “Be Gentle…Deborah.”

So I pick up my bucket and try to restore it.

Slowly. Carefully. Daily.

I’m learning the fine art of bucket repair…the tools, the method, the manner in which I need to do it.

And I keep adding to it, because it’s only early days.

Because that’s my bucket and I’m here to carry it.

Connection is Crucial

One of the things I never expected to lose whilst dealing with auto immune dis-ease was friends.

Not acquaintances or people I had known for a couple of years. But friendships I had developed since my “I’ll travel the world in 18 months and be back”…6 years later. People that I would call if I needed to vent, or needed to go out for a drink….my wing women.

To be clear, it’s not like they all stopped ringing because I was “sick.” In fact, it was quite the opposite. In the early days of diagnosis, the phone would continuously tweet and ring. There was no doubt, that for an emotionally constipated individual, I had clearly had some success maintaining interpersonal relationships.

But as the days become weeks, and weeks become months.

Interest wanes and life resumes for all, except the “sick”

The first 10 weeks of my diagnosis were hell and they were the weeks where I kept to myself the most. My then-partner (now husband) Lee, would answer the phone, respond to friends’ concerns and questions and speak to my mum, who needed an update every 3 hours.

I felt like I was imploding and I didn’t want anyone to see it or for anyone else to have to clean up the mess. It was my long held party trick – hold on and let it all go once no one can see you. I’m pretty sure it also contributed to the rusting of my trusty bucket, the vessel that keeps me together.

I then started to question myself, “Do they even want to hear from me?” “I’ve been a slack friend” or “I don’t want to talk about being sick.”

It’s the same awkward feeling you have when you’re in high school and you’ve started a chat with one of the cool kids, you feel like you’ve made a connection…but of course, no one has witnessed it, and now they’re with their harem of mates….you may as well forget it.

It’s human nature, the need to connect. Researchers at Harvard just released their findings from a 75-year longitudinal study on unearthing the secrets to a happy and purposeful life.

A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world  _ Lois Wyse
A good friend is a connection to life – a tie to the past, a road to the future, the key to sanity in a totally insane world
_ Lois Wyse

It appears that connection is crucial. George Vaillant, the Harvard psychiatrist who directed the study from 1972 to 2004 and wrote a book about it confirmed “the more areas in your life you can make connection, the better.”

The study followed 268 Harvard graduates from 1938-1940, ironically they were all male students. And I suspect in a post Depression era, guys weren’t so keen to chat about their feelings. But it appears the connection with other human beings is the strongest predictor of life satisfaction.

So yesterday I dropped an old friend a text, “Hey Stephen, hope you’re doing well. Has been a while but would be great to catch up when you’re next in town. Catch up soon.”

And today, the phone rang.

Puppy Love

The best thing my fiance could have ever given me amongst the dark days of an auto-immune crash, was something I had always wanted and never experienced…to be a puppy parent.

I can hear it already.

You’re crazy…It’s a puppy! It will chew everything.

You have CFS…you can barely make it around the block!?

A rescue dog? You’re insane, it will come with all kind of problems! What are you thinking?

Who exactly were they talking to?

A beacon of eternal health?

Franki Trimbole (true to her Griffith roots) has taught me lessons that no therapist, book or meditation class has. The act of mindfullness.

Franki has basic needs. Feed me, rub my belly, please take me on walks.

Uncertainty, boredom and peace....all part of the package
Uncertainty, boredom and peace….all part of the package

Every day, they are the three things she needs and reminds me of as she pleads with those big brown eyes. I often wonder what else she thinks. I wonder if she realises how much peace she has brought to my life. I wonder if she knows that her entrance into my life changed its course.

I was on a slippery slope of despair. I didn’t know how I would get out of it. I couldn’t see how to.

Of course, there have been days where she has driven me crazy. Decided to urinate on the rug or the carpet, as if this is the usual locale. Started barking indoors, not conducive to apartment living. Has been so excited to be off the leash, she sprints in circles as a homage to Olympic sprinters, and then has run off after a seagull, oblivious to my calling.

But overall her unconditional love and affection has squeezed its way into my heart and into Lee’s. I see him hold her with a glint in his eyes and a smile on his face, as he rubs her belly until she’s in a relaxation coma. They walk together down the street, Franki bouncing with those long legs and Lee proud to have such a well behaved and lovely natured best friend.

Every dog owner knows what I am experiencing, but I’m only discovering it. I’ve discovered a joy I have never experienced before. It’s magical. Her excitement when I walk in the door, after a couple of hours or five minutes. Her hello’s are genuine, not because she has to, but because she wants to. And she also makes it clear when she is unhappy with me, sitting with her head down low between her paws, all she needs to do is start tapping her tail, and I know I’m in for it.

I’ve lived in my coastal suburb for 10 years (there’s that magic number again) and I’ve met people I’ve never seen. I’ve had young kids, teenagers, mums and dads, retirees and random people come and greet Franki. And she laps it up, like she’s never received any affection in her life!

Franki has taught me some life lessons. How to be more open to other people. Not to hold back feelings.

One day she’ll also teach me about how to find my personal strength, as her long legs no longer carry her as far as she used to.

She’ll teach me to appreciate the broken heart I will nurse when she’s no longer here.

But in the meantime, I will always hug her, play with her, talk to here and teach her to always stop at a kerb. I’ll try not to be angry with her (for too long) as she chews through yet another lead.

Friendships are all about love and forgiveness, in equal doses.