Archive for year: 2015

You are here: / / 2015

Understanding Destructive Behaviour Part 1: The Fast Pace of Life

/in /by

Warning: This post could trigger emotions or feelings that you may not expect. If you need to access support please call Lifeline on 13 11 14 to talk to someone.

There are much different destructive behaviour’s in life these days, binge drinking, drugs, excessive eating, under eating, over spending, gambling, sex, smoking and the list goes on.

My question is why are we more addicted and dependant on these behaviours now more than any other time in history?

The destructive behaviour in my life was a 12 year gambling addiction.

I sought help many times during that period and I kept failing and returning to the behaviour. Except for the last time – it was different. I needed to understand why this I was behaving this way and finally I found a place to get those answers as a result  I started to understand the why behind my addiction.

The realisation I had was a combination of three very important factors and I will expand on them in a 3 part series

It is easy to believe that because we are so technologically advanced and connected to the world, essentially, through a keyboard, that we have it all. But the side effect to technology connection is that we are losing our human connections. The connection that feels real and authentic between people.

I had put up a convincing façade, so much so, that no one knew that I was struggling. All addictions are lonely places, I’m sure, but gambling is particularly lonely as it is virtually invisible to those around you.

If someone struggles with drugs or alcohol for instance, people around them are aware because they will often behave differently, they will look different and drugs and alcohol can be harder to hide. For a gambling addict, people usually have no clue until all the money’s gone or the person is dead.

That is the single biggest reason why I needed to challenge myself and get out of my comfort zone. I felt the need to go public with my experiences, to try and Help Other People Everyday (HOPE). I wanted my experiences to speak into that secret darkness that exists and the shadows people are hiding in because of the shame and embarrassment they feel. All these destructive behaviours being are actively developed as the Gambling industry rapidly goes from strength to strength.

It is an industry that ruthlessly and deliberately extracts everything you have and then some and simultaneously piles shame on you by labelling you a “Problem Gambler” and an outcast in society. Stop and think about when gambling is in the news- it is usually a person being publicly vilified for stealing or making a bad decision about the care of a child.

During this time I felt profoundly broken and unable to fix myself, so much so that had I not been pregnant with our last child, I fear what may have transpired as I had suicidal thoughts that I wanted to act on.

When the behaviours control and cause isolation and the loss of connection, they also strangle out all ideas of hope and a future. I thought that the people around me, my family and friends deserved better than me. I remember vividly, if anyone would try and pay me a compliment, I would recoil and think -If you really knew me you wouldn’t say that! They did know me; I was the one that had completely lost sight of me. Unable to see all that good things I did, and robbed of all joy from my life as it was completely overshadowed by the negative self-image I had taken on.

I lived in constant fear of my life unravelling and exposure. I even told my husband “if anyone ever finds out about this then I will kill myself!” I meant it, I was petrified. I can’t believe how far I have actually come in over 3 years, I feel so free of the shame that kept me bound for so long in a cycle of low self-worth and destructive behaviour.

I began by just confiding in a few key people and it just grew from there, with each person I told a little piece of me was restored. I began to make meaningful honest and authentic relationships with the people in my life. Through my vulnerability, it encouraged them to be vulnerable with me about their struggles and the deepening of all of my relationships was extremely life giving. I had no idea that so much healing and such extraordinary connections with the people in my life could have come from so much darkness and shame.

I really encourage others to evaluate the connections in your life, determine if you might need to make some new ones? Are you able to be honest with your friends? The point is – if there is no one that you can be open with about the good and bad in your life, and then the real risk is that the hidden issues can grow and take over our lives, our power and our self-image. Issues put out into the open give us back the power as we make the decisions about whom, what, where and when.

Whilst today I acknowledge that I will possibly always have a weakness to gambling, it holds no power or appeal over me, as I am awake and in control of my life. There is nothing brewing and festering in the dark anymore – gambling has gone from consuming me in every way to being nothing more than a freckle on my arm.

Warning: This post could trigger emotions or feelings that you may not expect. If you need to access support please call Lifeline on 13 11 14 to talk to someone.

Living with Ankylosing Spondylitis

/in /by

Warning: This post could trigger emotions or feelings that you may not expect. If you need to access support please call Lifeline on 13 11 14 to talk to someone.

I have Ankylosing Spondylitis. Don’t even try to pronounce that. We’ll stick with calling it A.S. Really all you need to know about it for this blog post is that it’s a chronic autoimmune disease which initially attacks the lower spine but can go on to affect your eyes, legs, arms and chest.

Ankylosing Spondylitis is a painful, progressive, incurable disease that affects many people in many different ways. However, most of these people suffer chronic pain caused by a protein in the body, building bone over healthy, mobile joints often in the most important areas of the skeleton. It can make most physical activities difficult even with something as simple as sitting down, walking or even brushing your teeth!

The main features of this disease are chronic pain and fatigue. Fatigue is a particularly nasty part of having A.S. – as the disease makes your muscles work ten times harder than somebody without A.S. and as a result physical exhaustion is common. Flare ups can happen randomly without warning and are painful. The fatigue that comes with a flare is terrible and you are left with no energy and the feeling of having been trampled.

Most commonly the symptoms can be things like – if your back is stiff and hurts when you move, if it hurts to touch the sacroiliac joint (two points at the side of the top of your pelvis where it joins your spine), and if your back x-ray shows signs of this disease – you may suffer from A.S. You may also have pain and swelling in your eyes, lungs and heart valves.

Most doctors believe that A.S. is an autoimmune disease in which a person’s immunity is so stupid that it attacks and destroys the joints in their back, rather than just doing its job of protecting a person from infection. The treatment is with immune suppressants that may make you feel better, but increase your risk for infections and cancers and shorten your life.

Nobody really knows why you have this condition, but the overwhelming evidence is that you inherited your susceptibility from your parents and you got this condition from an infection or some other trauma such as giving birth. Many doctors do not recognise the symptoms in women because it has traditionally been known as a man’s disease. Also if you are negative for a gene called HLAB27 you may have difficulty in getting a diagnosis, although it is not essential to have this gene to receive a diagnosis.

I was finally diagnosed at the ripe old age of 65 when I had problems walking from one end of a supermarket to the other. As a result my life has changed dramatically. Within a few weeks I went from happily contemplating a retirement with my two dogs, playing at sheepherding with them and having regular overseas trips to Europe and the Middle East, and enjoying the pleasures of eating out, to being sick, disabled, frightened and walking with a stick or a walker.

I was terrified of becoming a grumpy old woman trying to hide the constant pain, the woman everyone feels sorry for and others don’t know how to approach because she might explode or collapse into a flood of tears Over the past 3 years I have watched myself transform from a healthy, active, invincible woman to a sick, grumpy, defeated, disabled, immobile and needy person.

I had always had a bad back but doctors did not diagnose this at a point where some of the treatments might have helped me. Along the way one or two doctors mentioned A.S. but then dismissed it because I was a woman and they thought of it as a man’s disease or because I was negative for the HLAB27 gene which is a marker, but not the only marker of the disease. If only they had investigated their suspicions.

Perhaps the most difficult part has been adjusting to the diagnosis and coming to terms with what this means for my life now.   The biggest shock for me was discovering that the medical profession has no pain killers guaranteed to ease pain, as a result I have had to get used to living with severely aching backs, legs and shoulders and not being able to get comfortable in any chair or bed.

You take a cocktail of drugs which have frightening side effects on your kidneys and liver leaving little that helps. You know that this is your reality for the result of your life. There is no cure and no hope of getting better, just having to manage the condition as best you can.

I am only too conscious of my frequent grunts and gasps of pain as I move and which expose me to others as someone in need, someone who is suffering.   It does not stop those who see me park in a disabled parking spot and feel free to tell me I am not entitled to park there because they can see nothing wrong.   They make me feel guilty and defensive. So do those who tell me that – at least I don’t have cancer. I cannot tell them that in one way I am jealous of those who have – some get better and even for those who die there is the relief of the pain being over. I am jealous of people I see in the street who can walk and run and yet don’t appreciate the gift that they have.

I am now on first name terms with many paramedics because I frequently fall over outside my house and cannot get up.   I no longer have anything to talk to my friends about except their frequent overseas trips. My side of the conversation is about constant visits to doctors, therapists and specialists as I spend the money I had planned to use on overseas trips on medical treatments, equipment or adjustments to my home.

I am single with no family here and I am very concerned about my future and with rising medical bills I am also very concerned about how I will manage financially.

It has been almost three years since I got the diagnosis but I am still struggling to accept in my head that I am no longer able bodied but officially disabled with no real hope of it ever improving. I was never really aware of the impact of living with a chronic illness has on your mental health and wellbeing – it is a very personal and difficult journey.

 

Running Through My Doubts

/in /by

Have you ever doubted your ability to achieve something that is important to you?

It might be getting the perfect job or settling into a new city. Like everyone I have those doubts too. They might not be big achievements like I mentioned, hell most of the time I am just happy to get my kids to school on time, but they are still important to me. My biggest and most frequent doubt is about running. Living with endometriosis has given me a fear of failure I never knew existed.

I love to run. I didn’t always and for a time – I was fat. I was diagnosed with endo at 18 and used it as an excuse to eat. Then I decided to run. Eat less and get fit. Hey, if those fit elite athletes could do it then why couldn’t I?

Apparently being 40 kilos overweight had something to do with how hard it was. But as I lost more weight and got fitter I realised I loved it. I loved the new me. But my health was always an obstacle. Whether it was having to have surgery every year, horrible meds with side effects or the unbearable pain I had almost every day, my health tried to take away the one thing I loved doing. Through sheer stubbornness I kept at it though and that’s how I come to running in fun runs.

This year I ran a 14km fun run. I didn’t think I could do it. I signed up at the last minute after having to talk myself into it for 2 months. And yet I went out there and ran so hard and so fast I beat all my own PB’s. It gave me such a rush – I felt invincible.

But now I fear that I won’t ever run like that again. My running has slowed so much it feels like I am walking and my pain is terrible. I am already starting to forget the joy I had running that fun run because of the doubts creeping back in. I can’t stand it but can’t seem to stop it.

Every single time I go out to run those same doubts surface. What if my pelvis hurts? What if my hip hurts? What if I am slower today than my last run? So many what if’s – it hardly makes running worth it and yet after each run I feel great. My mind is clearer and no matter what my time is or how much I hurt; I feel I have achieved something.

Having suffered depression and anxiety over the years, and still suffering with anxiety, I have found it is the one thing that helps keep my head clear. But running almost creates its own anxieties to the point I question my sanity. Seriously, why do I do this?

But I know tomorrow as I lace up those damn expensive shoes yet again, put in my headphones, and choose my music and start running the doubts will be there again. And while I will have to talk myself into every step I will love it at the end. The freedom it gives me hasn’t been taken away by my endo or by those doubts. Not yet anyway.

 

Making Assumptions – Medical Care and Mental Illness

/in /by

Warning: This post could trigger emotions or feelings that you may not expect. If you need to access support please call Lifeline on 13 11 14 to talk to someone.

Most of us feel secure in the knowledge that if we become seriously ill, we can present to a hospital emergency department and receive life-saving care, but there is an Australian subpopulation that routinely has appropriate medical attention withheld during a medical emergency. This has resulted in an increase in the morbidity and mortality in this subpopulation.

This subpopulation numbers 690,000, and it may surprise you to learn that it is not Aboriginal and Torres Strait Islanders (669,900 or 3%) , nor prisoners (33,791 or 0.19%) . It is the subgroup of people with mental illness. It is estimated that there are 625,000 people with severe mental illness, and 65,000 with severe mental illness and psychosocial disability living in Australia. Although these statistics include people with severe depression, they do not include the 3,000,000 Australians diagnosed as mild to moderate including diagnoses of depression and anxiety. This is 12.6% of the total Australian population of 23,906, 073.

Over a lifetime, nearly half of the Australian adult population will experience mental illness at some point—equating to nearly 7.3 million Australians aged 16 to 85. Given the prevalence of mental illness, it is possible that you may experience it in some form in the future.

In addition to the estimated 9,000 Australian premature deaths from suicide each year among people with a severe mental illness, a significant proportion of mentally ill people die disproportionately early because their physical symptoms indicating life-threatening conditions are misdiagnosed as psychosomatic and therefore they are not treated with the appropriate preventative care.

In his presentation “Premature Death and Serious Mental Illness” (TheMHS 2015, Canberra) Joe Parks showed that people in the U.S.A. with serious and persistent mental illness died on average 25 years earlier (up to 30 years earlier) than people without mental illness. Fifty seven years was the average age of death. Eighty eight percent (88%) of deaths in people with mental illness were from natural diseases at unnaturally young ages. People with Schizophrenia died at 2.5 to 3.5 times the rate of the rest of the population.

My personal experiences with the health system and living with mental illness have seen me experience this first hand. I was horrified when I was refused treatment to assist me to breathe in May 2015. I had been ill for five days with disabling and worsening flu symptoms. I had a severe headache, sore throat, productive cough and chest pain. I was unable to speak in full sentences as I was so breathless. My high temperature (38.1) and elevated heart rate (112bpm) indicated a serious infection. I was unable to lie down because whenever I did I could not stop coughing which made it too hard to breathe.

At the Emergency Department, a doctor began appropriately treating me until she saw the previous diagnosis of depression on my file. Despite the fact that I was in moderate respiratory distress and informed her that I had asthma since childhood, she then asked me if I was there because I had tried to kill myself and if I was feeling suicidal. She told me that I was having a panic attack and that my struggle to breathe was psychosomatic due to anxiety. She was insistent that I have a psychiatric assessment instead of giving me medical assistance to help me breathe.

After four hours of struggling to breathe and requesting Ventolin in vain, I removed my intravenous cannula and walked out. I drove to a pharmacy and requested a Ventolin inhaler, which they gave to me before I paid for it because it was obvious I was unable to breathe adequately. I then saw my GP. By this stage my lungs made crackling sounds as if I was breathing through water which were audible to people standing next to me. My temperature had risen to 38.2. The doctor prescribed me oral steroids for five days, an antibiotic, inhaled steroids and Ventolin. Even with this proper medical treatment, it was several weeks before I could speak in full sentences again without gasping for breath.

I was extremely frightened by how blinded the doctors were by a patient’s history of mental illness, so much so that they incorrectly diagnose and neglect a patient’s serious medical condition, and dismiss it as psychosomatic. It was also incomprehensible to me as I am a Registered Nurse of many years experience, including emergency nursing. I was fortunate that despite being so ill, I was able to leave and get medical assistance elsewhere. For many others when medical treatment is delayed there is unnecessary pain, and a poor experience accessing medical help means people are reluctant to try again in the future. The outcome of not accessing medical help can be life threatening and ultimately result in premature death.

It is critical that we talk about our experiences of the health system and ensure that regardless of your mental health status, the physical issues are tended to with the same rigour and attention to detail that is given to those presenting without a mental health diagnosis. Until that time – I fear that people living with mental illness will continue to have medical treatment withheld.

The House Always Wins

/in /by

Warning: This post could trigger emotions or feelings that you may not expect. If you need to access support please call Lifeline on 13 11 14 to talk to someone.

If as a society we know “The House Always Wins” then why gamble?

It’s just a bit of harmless fun right? For many people it is, but for many others it is anything but harmless. I began playing the pokies at 18 and from that first win came a big rush and what I know now – is that a strong neural pathway was formed in my brain. That pathway was powerful and as it turned out misunderstood by everyone in my life, but more importantly misunderstood by me, but it kept me playing the machines or wanting to play for over 15 years.

I would shake my head at people that could walk past me at the club, drop their dollar in and just keep walking. I can still hear my internal voice saying “they have no clue what they are doing or how to play them.” If only I knew that they were the lucky ones, not me, they were ones that weren’t affected by them in the slightest – they could play them for fun, but most importantly they could walk away.

I’m not here to rant, judge or preach. I am just simply sharing my experiences of struggle and perhaps what I write might resonate with you. On some level we are all coping with different stuff and in different ways. Gambling addiction is shrouded in public stigma and misunderstandings. Shame keeps people firmly in the dark and stops them from seeking help. People are too afraid to be honest and vulnerable, to get the treatment they desperately need, for fear of judgement.

It makes sense to me now – why I did what I did, but at the time I just kept thinking, I’m a smart woman, why do I keep making the same mistake over and over? Why was I self-destructing? The fear of exposure was paralysing, my brain was exhausted from being totally overwhelmed all the time and the battle that raged between who I believed I was and who I desperately wanted to be.

In my search for information I attended a course yesterday that was put on for people in the health and community sector to educate them on understanding the complexities of a gambling addiction. Whilst I have done a lot of research during the last 4 years of my recovery, one final piece of the puzzle was answered.

The psychologist went into depth about what happens when the brain is under intense stress; the logical intelligent (Neocortex) part of the brain goes “offline” and the (Limbic) childlike reactive part of the brain takes over! I was amazed that this missing piece of understanding was finally given to me. I had spent years and years feeling like I was profoundly defective. I beat myself up constantly wondering why I kept resorting to gambling, like it was somehow an answer to my problems – when it was really the source of them!

Someone had once said to me “the very definition of insanity is doing the same thing over and over again and expecting a different outcome!” So not only was I an addict but apparently also insane too! More shame.

Towards the end of my addiction everything had spiralled out of control and I became more and more desperate as I was completely, physically, mentally, emotionally and of course financially ruined. Had I not been pregnant with our last child I wouldn’t even be here now, I felt trapped, I wanted her so completely but I was so desperate for the pain I was in to be over. I wanted to have a rest.

I had tried to get help in the past and had failed. I felt like there was no hope, no future. I thank God that I gave it one last try.

I approached Mission Australia and got help through a program called Gambling Care. In the ACT – Relationships Australia delivers the Gambling Care program. They helped me to understand the full extent of what was going on inside me and all of the external pressure I was under. I participated in one on one counselling and joining a SMART (Self Management And Recovery Training) recovery group changed my life.

The clarity of understanding of myself and my life gave me the tools I needed to proceed forward in my world and be restored fully as the person I was before everything went wrong, and the fear and shame took over. They helped me to understand the why behind my gambling?

Today I am an active member of my community, raising my family and really hope that sharing my experiences of gambling addiction can let others out there come out from the shadows of shame and get the help they need too.

 

Taming the Shrew: Living with Endometriosis

/in /by

“Say she rail; why, I’ll tell her plain She sings as sweetly as a nightingale.

Say that she frown; I’ll say she looks as clear As morning roses newly wash’d with dew.

Say she be mute and will not speak a word;

Then I’ll commend her volubility, and say she uttereth piercing eloquence.”

William Shakespeare, The Taming of the Shrew

 

In my mind I often refer to my Endometriosis as a ‘bitch’ – as if it has a personality that is fickle, cantankerous and enjoys inflicting pain on others. Sometimes it seems more like a monster – that thing that compels you to hide under the bed and cry. Endo is a life sentence. Your life is now not your own. It won’t take your life away from you, but it will hold you hostage until something else does.

There is no road map. No stages of progression. No standard treatment plan. No way of seeing it for what it really is without cutting you open and digging it out. There is no cure.

This is all only apparent, of course, once you have figured out what it is you actually have. It takes, on average, about eight years to be diagnosed with Endo. We spend that time with no answers as to why we are lying flat on our back in the kind of agony that makes you uncontrollably whimper out loud.

No answers as to why we have to set an alarm for the middle of the night to avoid waking in a pool of blood.

No answers as to why we feel so emphatically fatigued.

No answers as to why we can’t bear even the thought of sex with our partners.

Some of us have never had a partner, because how do you explain to a person who does not already know and love you that you can’t bear the thought of going through the pain that physical intimacy causes?

Endometriosis has taught me a lot of things. It’s taught me to question easy answers and good news. The sceptic in me grows more and more, day by day – constantly being reinforced by this relentless beast. It has taught me that anything I have could be ripped from me at a moment’s notice entirely without my permission. It has taught me that some people are deeply ignorant and stupid, some just outright nasty. It has shone a light on the inadequacies of the health and welfare systems which treat people with chronic pain with scepticism, impatience and apathy. It has shown me why the world still needs feminism as much as ever. It has tarnished my dreams, rendered vulnerable my financial security and scattered any notions I had of having a stable career.

Sometimes it feels like my whole life is wrapped up in this disease; tangled and constrained. It holds me back from fully being myself. But it also holds me back from living on autopilot. Everything I do – every movement, every breath, every word – is a choice now. Each action is something I choose to do at the expense of something else. If I choose to hang out the washing, I might not be able to cook dinner. If I choose to have sex, I might not be able to do anything else for the next two days. There is always a plan. I no longer over-commit myself to things I don’t truly care about. I no longer join endless committees. I no longer spend time with people who suck on my soul. So in some perverted way, Endo is a gift. It has given me freedom and control to be the simplest, most genuine version of myself.

Endo has shown me that I possess a strength I never knew I had, and love I don’t deserve. It has taught me how to say ‘no’, and how to let go of silly things that cause serious stress. It has brought me new friends – beautiful women who embrace life and face each day with the same tenacity that I am learning to see in me. It has reinvigorated old friendships by creating common ground. It has taught me to be more appreciative of simple things – art, silence, TV, good chocolate, opiates, holding hands, peppermint tea and wheat bags.

My life is rich with colour; with feelings, with moments of clarity amongst the moments of despair. It is filled with birds and cake, flowers and cuddles. It brings gifts I never expected and challenges that make me a better human being.

Like the last slip of sunlight through the window before dusk – that hovering orange glow streaming across the walls – these moments of abundance tell me that there is more light and warmth to come. And there is more to me than Endo.

 

 

Supported by ACT Health Directorate

QUICK EXIT