Tag Archives: anxiety

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.

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Wile Coyote & Me

For those who don’t know me, I’m an all-or-nothing person.

I give 110% or I give nothing at all. Mediocrity isn’t my thing, in my mind, if you’re able to do something, do it properly; it’s unfair to not give you’re everything.

Who doesn’t remember Wild E Coyote ‘s dedication? Plotting each and every trap for Roadrunner? As a child I was in awe. The mix of braveness and stupidity in all its glory!

Courtest of Moby Picture
Courtest of Moby Picture

But the lesson I took is if it doesn’t work – try and try again.

This might explain why after almost two years on various auto-immune drugs I decided enough. Let’s go drug free and see what happens. Read: the doctors have it wrong.

That explains how I managed to get back on a bike and cycle 200kms in three days, 9 months after my disastrous freefall into AI hell. Read: I think I’ve beat this now. Lesson learned…thank you. Let me get back to my life.

And that also explains why I think (and maybe still believe) that the only why I am going to be able to reclaim my life is to keep pushing the wheelbarrow…uphill….by myself. Read: the doctors have no idea and I’ve got to work this out myself.

The last month has seen an increasing level of bone grinding joint pain and hot-coal walking nerve pain. By the end of the days my hands ache so much it’s hard to hold the toothbrush.

I spend most of my day trying to find creative places to shove my feet, to keep them cool. And more creative ways, a la MacGyver, to deliver me efficiently and effectively from the 3rd floor living to terra firma, minus the 45 stairs.

I spend 10 minutes every morning reminding myself that no matter how much my knees, shoulders or hands hurt, things will be better once I’m out of bed.

After all, I will be showered by a plethora of Franki kisses. And kisses from Mr Metamucil, if he hasn’t already left for work.

Last Friday, I woke up to my neck seizing and an electrical charge flying up and down the right side of my spinal column. I felt like Wile E Coyote, so excited that he has found the power source, but forgetting to let go.

I hobbled to the physiotherapist with tears streaming down my face… “please make this stop.”

My physio asked what type of pain I was experiencing and how I would rate the pain. Was I still drug free? Now it was her turn to plead, “please go back on the drugs”.

So as I lay on the table, wiping away tears with one hand and trying to keep my shoulder up with the other, I asked, “why is it that my shoulders are so weak?”

And she explained, “you’ve lost your structural strength and being in pain exacerbates this.”

Because it is appears that when the brain has been registering pain for an extended period, collagen which is a protein critical and basic building block that facilitates tendon, ligament and muscle strength can no longer do its job properly.

Researchers have shown that in a chronic pain patient the amount of collagen produced decreases, and of the 19 different types of collagen required the ratio of collagen rebuilding is off-kilter. But the dysfunction continues as the parallel structure which tendons and ligaments align themselves is disturbed and microtears and fibre separations are commonly seen in MRI’s.

It appears in my gung-ho, “I can manage this illness without drugs” approach, what I failed to realise that the creeping pain in my body isn’t the beginning of a bad turn, in fact at a molecular level it’s clear, the bad turn is approaching the end of a cliff.

by FabulousESPG
by FabulousESPG

I haven’t been able to manage the pain messages through mindfulness or meditation. I believe it can work. I have experienced the benefit. The relief.

But that was when my body was still receiving some synthetic assistance. The synthetic assistance I thought I could do without.

It appears, I’m simply not ready yet.

Part of me was hoping that the past 24 months had been one hell of a bad dream and an over-reaction by not only myself but also by the doctors.

Part of me was hoping that I could cure myself by understanding and eating “real food”, being mindful, exercising within reason, getting good sleep and listening to my body.

I’m not proclaiming this is a cure for A.I., but I do believe this has the ability to help heal not only my body, but my mind. And I suspect it is my mind that tortures me more than my body.

But it appears I’m still a little off that nirvana as well.

Intellectually, and deep down, I believe that I can create a healthy and wholesome existence, despite the A.I. honour roll and minus the synthetic assistance.

But I think I got a little cocky. I thought I could see the finish line. I started to take short cuts. And I cheated myself.

And I should know by now…you can’t cheat with A.I. and there’s nowhere to hide.

So at 4pm last Friday, I walked into my GP’s office and placed my white flag on the table and asked, “can we start again please?”

The Illusion

When given the choice, I always take bad news first, hoping that the good news will wash over and overwhelm the bad.

But what should you do when the bad far outweighs the good? Perhaps I should reconsider my approach?

Let me take you & I, back for a minute.

It’s been six weeks since my last blog, a big no-no in the blogging world. Apparently your readers want to hear what you have to say, and want to hear it often. I’ve always maintained the personal rule, that unless I have something useful, interesting or helpful to say…keep it to yourself.

Those are Dear Diary entries, not reflections I want posted to the world wide web. After all, I am emotionally constipated.

I’m still finding the balance between vulnerability and verbal diarrhoea.

Six weeks ago, I wrote about the testosterone treatment I has started taking in March. After almost two years on the autoimmune medical rollercoaster, I was starting to experience a significant change in my energy levels and re-engaging in activities I had long ceased and at a frequency that had escaped me for just as long. I had developed hope.

After a third set of blood work in early July, my testosterone levels were steadily climbing.  And the doc suggested we kick up the dosage by 50%, just to keep the momentum going. I was accelerating on my continuum of hope.

Brunette & Balloons canstockphoto

Just over a month ago, I celebrated my birthday. And I love birthdays! It’s the only day where you can pat yourself on the back for completing the most harrowing journey ever, the passage down the birth canal (sorry C-section babies!).

After all, at 37 King Henry III of France was assassinated, Michael Hutchence, the lead singer of INXS was found dead in a hotel room in Sydney, Vincent Van Gogh was found with a gunshot to his chest and Lou Gehrig died from an autoimmune disease known as ALS or Motor Neurone Disease.

It is infamous company, but clearly I wasn’t doing so bad.

Within days of my birthday, I received a call from a friend, fresh from her honeymoon. I knew instantly the phone call at 8:30 on a Sunday morning would not be good. She had been nursing her partner and husband of 15 days through motor neurone disease for the past three years.

She called to say that he passed away. On the last day of their honeymoon.

A week later we said our final goodbyes to a gentle man who deserved to enjoy much more of his married life. Of life in general.

I was faced with the strange juxtaposition of watching my girlfriend flanked by her maid of honour and bridesmaid, as she walked down the aisle, except this time to her husband’s casket.

Overwhelmed by the cruel irony of life’s highs and lows, in such a short and swift period….it was heartbreaking.

Three weeks ago, I was woken up by crushing pain in my shoulders, reinforced to me every time I rolled onto either side, as I desperately sought my “sleep” position.

I skipped yoga that week.

The following week, I could no longer ignore the shoulder pain and started taking a painkiller before I went to sleep. I’ve worked out that without restful and rejuvenating sleep, I’m unable to operate and any pain I am experiencing is amplified.

No yoga and no spin class that week.

By early September, it wasn’t the shoulder pain that had sent my neurotransmitters into overdrive, my old friend Tonya Harding was back. Swinging at my knees with that police baton. And laying on my back became increasingly painful as I felt my kneecaps sink into the back of my legs.

I checked in with my chiro wondering whether he could help stabilise my knee. Had I accidentally hyper extended at yoga or twisted it funny? I am 37 after all.

After some examination he noted that my quad muscles were no longer activating as quickly as they should. Nor were they bracing to support my body weight or knees.

I skipped Pilates that week.

Chick in flight_canstockphoto

My continuum of hope, had taken a sharp u-turn, in the wrong direction.

Today, I returned to the endocrinologist to review my testosterone count.

How do you feel, he asked? Should I tell him the truth or should I lie?

“Well, I definitely felt better with the most recent increase in the transdermal cream, but I’ve since rediscovered the joint pain, I struggle to open the jars and use the can opener and the fatigue is creeping back.”

“Well, your testosterone count is finally at the ‘normal’ range. From that perspective we’ve been able to address the hormonal issue. But clearly you have autoimmune pathology presenting.”

Yes, I do.

A few hours later I still feel numb. Like when you find out that the tooth fairy isn’t real or your football team loses in the dying seconds. It’s the realisation that the illusion I held onto, appears to be gone.

So I’ve decided the next time I flip a coin, I’ll always choose bad news first.

Because you see, the good news was that “I’m normal,” so surely it’s only upwards from there?

The Accidental Investigator

I think it’s only fair that when a doctor diagnoses you with an auto-immune disease, and they send you out the door with a prescription for medications, further blood tests, CAT scans and ultrasounds, and a reassuring smile they should also provide you with a prescription for the following:

Inquisitive mind. Ultimate skeptic. Fastidious researcher. Keen debater.

Boy & stethoscope

And not afraid of dark alleys & u-turns.

For those who are unfamiliar with the juggernaut that A.I is, I’ve written about my rollercoaster here, but let me try to provide a glimpse of that moment in time when A.I. is confirmed.

You’ve been sitting uncomfortably in the waiting room fidgeting, pretending to be interested in the latest Kardashians saga on the cover of Who magazine, whilst simultaneously hoping someone will want to play Words with Friends.

But the reality is you’re just waiting for your name to be called, and you pop your head up every time you hear the docs shoes approach the hallway…and then someone else steps up. Another sigh. Another 15 minutes.

And then, it’s time. The moment you’ve been waiting for, followed by the split moment where you’re hoping you can make a quick stage left exit.

You’re not meant to be here anyway. You’re over reacting. Your nan said you were a hypochondriac, it runs in the family.

But you follow the doc. Formalities are exchanged. You take a seat. You wait for a smile, it’s tortured, so you quickly try to put one on.

And then it comes.

The silence. The deafening silence.

Yet you can see the docs lips move. And the panic sets in, “I must be deaf! I can feel the blood rushing to my ears.”

But you’re not deaf. Nor are your ears burning. You’re in shock. And your brain is a powerful computer that is carefully selecting what you process.

I’ve mentioned it before, because of its many manifestations and a lack of funding and research, diagnosis of any A.I. disease, brings much more than just shock and confusion for a patient, it also brings much shock, confusion and helplessness for medical professionals.

They’re hoping you’re one of the text book cases. Responsive to pharmaceuticals. They know there will be an adjustment period. Where your body goes into shock as it gets hit by very powerful drugs. And they know you will experience some horrific days and question whether they know what they’re doing at all.

But they’re confident, to a certain degree. Until it starts to get complex. Until you don’t start to respond to text book therapy model. Until the doc says to you, “I’m increasingly seeing more cases where the standard recipe doesn’t work. I’m not sure what to do next.”

This is the moment where the A.I diagnosis hits you. And the prescription is in your hands. This is where you’ll need to dig into your bag of tricks.

What bag?

Do you remember asking where strawberry milk comes from?

Because you know that chocolate milk clearly comes from brown cows.

Do you remember asking why a dog chases a cat?

Do you remember asking how can the sun warm up the earth, when it’s so little, compared to your beach ball?

And is it true that a turd-burger tastes like the best banana split you’ve ever dreamed of? Just like your brother told you?

Remember those traits? The ones that were probably beaten out of you in the corporate world. Pull those out, dust them off and don’t be scared.

Question the docs, the specialists, the Professors, the very educated men and women, with their multiple certificates hung proudly on the wall behind them. This is your first line of defence and support.

I’ve struggled with this, and I still do. I may read a journal article and think, finally an answer. And I’ll go into the docs office, with my notebook lined up to ask questions.

And then my courage wanes. I see all those certificates lined up. Somehow it just doesn’t sit right. I feel sheepish. Like I’m being the smart arse in class. Giggling and mocking from the back row. Challenging and hiding behind the class clown.

Sometimes I can shake the doubt and I ask about a research article I found and ask whether there is any further research in the influence that hormones play in A.I? And in my case, whether my non-existent rates of testosterone may be due to high metabolism found in women with lupus? Testosterone, a building block for energy, mood and muscle building. All which I have seen waste away.

And often the response is greeted with, “Yes, it’s a theory. But we have no idea how to reverse it.”

It’s a minefield. And one often fraught with frustration, desperation and plenty of tears. Off one merry go-round and onto another.

But what I try desperately to hold onto is motivation. Motivation to accept the challenge of the accidental investigator and to share my findings with my defence team.

On good days, I go down the google rabbit hole hoping I’ll pop up the other end and it’s still daylight. On a lucky day, I may even find a carrot. And add to my fibre content for the day.

It’s never a complete loss and I’ll always wonder about that turd burger.

Ready, Set (Breathe) &…Go

When I first decided to publish this blog, I took a friend’s advice, “Just hit publish” she said, “ Who knows if anyone will read it anyway?”

I had purchased the domain name almost 12 months earlier. I had no doubt. Emotionally constipated. Who hoo that’s me…it’s in the stars!

The title was never in doubt, it was usually my opening line at a speed dating event and was often received with a chuckle, and I’m sure some scepticism. But I prided myself in being honest…you won’t get dolphin tattoos and hand holding from me. I’m just not built that way. That warm and fuzzy stuff makes me uncomfortable. And of course, there’s a story there to share…just not quite now.

I had written (posts), generally in fits of inspiration (and desperation). Several at one time, and then nothing for weeks. The writing came easily to me, I was 9 again, and loving it.

For 12 months it became my private place to share (with no one other than myself) my frustration and ramblings, the ridiculous and the comforting. And surprisingly it provided a place to find some peace and equilibrium;

because when it all stays in my head, the incessant chatter is overwhelming and nothing makes sense

Puddles & Play

I had no plan on my approach. Whether to be completely objective sharing the latest in scientific research into Chronic Fatigue, Fibromyalgia or Lupus, or whether I would be uber-positive and annoyingly optimistic (unlike me) trying to convince myself or others that life with a chronic disease can be rich and fulfilling. I’m still struggling with that one.

I didn’t plan to share my deepest and darkest days, because I was (and still am) afraid if I actually admit to it, and feel the pain in its fullest and most terrifying grandeur, that it will envelop me and I’m afraid I won’t be able to find a way to get up and into enough air, let alone find the strength to get out of it.

I just planned on being…I don’t know…just plain old honest. And ultimately, much to my surprise and dismay, vulnerable.

An emotion I had been keeping well-guarded for most of my life.

And in the moments of doubt, sprinkled with troll-associated terror, I kept reminding myself “who knows if anyone will read it anyway?”

So I hit publish. Privately. Quietly. Sharing only with those closest to me. Scared to death that they would think it was boring, unengaging or even worse “I’ve heard this all before.”

And out they go. One at a time. As the tightness in my throat clenches hard and the pain in my chest rises until I feel like I’m going to choke or hurl; every time I hit publish.

And then it comes. Like clockwork.

Texts. Phone Calls. Tears.

Emails.  Likes. Joy.

Comments. Engagement. Relief.

From people I know and most surprisingly from those I don’t.

It’s a rollercoaster of feelings I don’t quite understand. A mix of terror and sublime bliss. Trepidation and exultation. And it all happens out there, within moments, completely out of my control.

My writing is a little more stable now. There are no fits of inspiration, I notice a story in almost every interaction I have. It’s just the courage to jump on that rollercoaster which still terrifies me.

And I realise that this funny little thing called life is rather persistent, forever trying to remind me to slow down, to observe, to share and to enjoy.

So as I take my morning walk with Franki, as I sit at yet another doctor’s office, and as I struggle with a downward dog, some days more than others, I remind myself to step back. Store the memory. Feel the anxiety and the fear.

Let it marinate, but don’t let it stew.

And when I’m ready, bring it back and toss it around like a good Greek salad and write. And in time, find the courage to publish.

So thank you for indulging me and sharing in my exploration.

Without your likes, your comments, your high-fives…my search for a daily scoop of fibre, comes much easier than I ever thought possible.