Meet Henry

Meet Henry.

I created him at an Access Arts workshop. He has a depressive disorder & FND. He also loves pink flowers, art, the theatre, chocolate, going on adventures and talking about uncomfortable but important issues.

Keep an eye out for his fun adventures – he’s just taken a trip to space to spread awareness & break stigma about mental illness across the galaxy.

You’re alive. You’ve survived. You got this.”

While I was looking at the 5kgs I put on during my 5 week hospital stay and thinking about the fact I had been in a mental hospital for 5 weeks, I was beating myself up… but then that small, kind compassionate voice reminded me, “you’re alive. You’ve survived. You got this.”

If you’re in recovery be kind to and nurture yourself. Remember; you’re alive. You’ve survived. You can do this.

Fun Fact: Hospital Disharge

‘Fun’ Fact: when you are discharged from hospital, they don’t expect you to leave “well” and ready to fully engage in normal life, as it was before you were unwell. They wait until you’ve made a change in direction, lasting a few days to show you’re moving toward wellness.

I was so surprised when my Psychiatrist told me that’s how it is. So, I leave the psychiatric hospital, returning home tomorrow and I am excited, thrilled and a little bit apprehensive. I’m feeling better than I was 5 weeks ago, but I am not where you may expect me to be in my recovery – I am not yet “well.” The real test will see how I am going in 6 months time.

If someone you love is being discharged from hospital, they need your love and support to adjust back into life, slowly. Realise they’ve just left a safe, regulated environment, where they didn’t have to cook, clean or work. Leaving can be scary.

So maybe offer to clean their toilet, cook a meal, do some dishes, a load of washing or bring over some groceries. Be a legend.

Remember there will be more good days than before, but don’t be surprised when their are bad ones. Remember that and be a legend.

Be patient, be kind, be empathetic, be thoughtful, be compassionate – show love and genuine care. Be a legend! It will be worth it as you see your loved one become more and more ‘themselves’ again.

So, please, be a legend and lower your expectations. They’re still ‘getting better,’ just in a different environment, at home, hopefully with lots of love.

A Psalm: for Depression

Mighty God, Powerful Saviour;

My heart is breaking at its very core.
    When I look at the sinfulness and brokenness of this world,
    the injustice and hypocrisy –

    I just want to leave it all behind, forever.

My body is so tired and weary –
    every movement aches
    every motion is laborsome.
A knot sits in the pit of my stomach –
    I’m nauseous.
    I’ve stopped eating.
I wake during the night –

    my sleep is restless, fragmented.

My brain has turned against me –
    it has become my enemy.
    It has betrayed me,
    it is trying to kill me,
    it wants me to die –

I have no greater enemy than myself.

I am lost,
I am torn,
I am broken,
I am hurting, and

I feel stuck in the depths of this pit of despair.

But you, Lord, you hear my cry,
    you read my thoughts,
    you feel my pain, my anguish –
and you never abandon me,

    you never leave me alone in the mess.

Lord, please deliver me –
    rescue me from myself

    and the web of lies my brain has caught me in.

Lord, lift my soul from this darkness

    and bring me into your glorious light.

Lord, show me your loving kindness –
    your mercy and compassion.

Don’t leave me alone and abandoned in this lifeless pit.

Lord, please remind me
    of your glorious deeds
    and perfect promises

as you fulfil them every day.

I know the day of the Your return is near!
    But please protect and preserve me
    during these dark hours of the night,
that I may not be destroyed in my despair.

 

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Watercolour cloud painted by Alexandra Ellen on 29.1.18

Six Hidden Realities of Living with Chronic Pelvic Pain

First, a warning without apology: this is a TMI post, discussing six hidden and very uncomfortable aspects of the pelvic pain experience.

No one likes pain and no one can begin to comprehend the experience of chronic pain until you’ve been hit with it. It’s uncomfortable, frustrating, incurable, exhausting and life altering. The chronic pain train also drags behind it carriages filled with medication side effects, fatigue, painsomnia, specialist visits, unemployment, disability, isolation, poverty and mental illness.

But chronic pelvic pain, by its very nature and location, adds a new dimension of humiliation, shame, violation and stigma. Pelvic Pain can be caused by conditions such as Endometriosis, Adenomyosis, fibroids, scar tissue, PCOS, Ulcerative Colitis, miscarriage or ectopic pregnancy, Vestibulitis, Vaginismus, Vulvodynia, prolapse and poorly executed episiotomy stitches (yeah, there are a lot of reasons, and this isn’t an exhaustive list). In Australia, approximately 1 in 4 women between the ages of 16 and 24 have a long-term pelvic condition, while 1 in 12 men exhibit pelvic pain in the absence of a medical condition. So, in light of Pelvic Pain Awareness Month, here is a list of ‘hidden’ realities for women (and I’m sure men can relate too) that come with having chronic pelvic pain.

1. Your “Private Parts” Don’t Feel so Private

I don’t know any woman who likes getting a Pap-Smear or internal ultrasound; it’s awkward, uncomfortable and makes you feel vulnerable – but most of the time you have to do it if you want to maintain your good physical health. When going to the doctor with a pelvic pain complaint, they tend to examine the site of pain, some of this can happen by pressing on the abdomen, but a lot of it has to happen through an internal examination – yup, someone’s fingers poking and prodding in an already sore and tender vagina. Something which is supposed to be personal and private can suddenly gain a large audience in a small amount of time.

It was a sobering thought when I realised I have only had one sexual partner, yet I’ve lost count of the number of people (well, health professionals) who have put their fingers inside of me (charming, I know). 

2. Taboo

It’s fairly simple to explain that, “my knee is killing me because I’ve done my ACL,” “I have to stretch regularly because I have a slipped disk” or ”my left side is sore from a hip replacement.” Good luck trying to tell someone your cervix is cramping, that you have a stabbing pain stemming from your vagina, or that sharp pains are radiating from your clitoris without coming across crude, rude and totally inappropriate.

It’s not kosher to talk about your genitals, reproductive organs and sexual health. People don’t want to say the words and others want to hear them even less. It’s just too taboo. The problem is, when you bow down to stigma and stay silent, important issues go unspoken, unnecessary shame is projected and necessary medical treatment does unsought – and this is not okay. Everyone should be encouraged to seek medical advice for any persistent pain. Everyone should be given the basic human right of being heard when communicating their pain experience to others.

3. It Goes Undiagnosed and it’s Extremely Hard (and uncomfortable) to Treat

Referring back to the female reproductive system being a ‘taboo’ subject, I believe this is one of the reasons medical research in this area is lagging and why many GP’s are unaware of pelvic pain causing conditions. It’s also the reason why many suffer in silence, putting off seeking medical help and making the epidemic appear less severe than what it is.

But when someone finally decides to seek a diagnosis and treatment, it’s not a matter of having a blood test. The first step is usually an internal examination which is painful physically and can make one emotionally vulnerable. This can be true for teenagers, people who aren’t sexually active and especially true for those who have experienced sexual abuse/trauma. Treating the pelvic floor can be even harder for men, as the only way to directly and internally examine and treat a male with pelvic floor pain is through the anus.

Conditions like Endometriosis, Adenomyosis, fibroids and scar tissue find their most accurate diagnosis and effective treatment in surgery. For these and many more reasons, both men and women can spend years going from doctor to doctor, desperate for a diagnosis.

When you finally have a diagnosis, treatment can feel just as difficult, inconvenient, painful, distressing and violating. Once a medical condition has been treated, there is often residual muscle tension and nerves can become over sensitised to pain signals, which results in a Chronic Pain Syndrome in the pelvic region. The best treatment option I’ve found to reduce muscle tension, spasms and desensitise the nerves in the pelvis is seeing a specialised pelvic physiotherapy. Treatment from a Pelvic PT can include a pelvic remedial massage, the use of Vaginal Dilators and internal TENS unit). I have recently begun researching pelvic botox injections, and it seems to be having positive results.

My point is, managing any chronic illness and pain is difficult but trying to diagnose and treat pain in the pelvis has it’s own ‘special’ difficulties and frustrations.

4. Sex: a Painful Chore

Sex is meant to be pleasurable, bringing two people closer together physically, emotionally and relationally. However, it’s hard to enjoy sex, reaping its benefits in a relationship when it exacerbates pain. Some people experience pain during penetration due to a tight pelvic floor. For other women, any kind of sexual arousal and activity can cause a great deal of pain too. Others experience orgasms that, instead of bringing euphoria and a physical release that relaxes the body, turns each nerve ending of the pleasure centre into a vicious postman, delivering a package of pain to the rest of your body. In relation to women, the clitoris has over 8,000 sensory nerve endings (twice as many as men) which can affect up to 15,000 more nerve endings in the pelvic area. That means the pelvis is already a very sensitive area for women and when pain is involved, all those nerve endings act like speakers in a radio, elevating the sound of pain signals 

Bottomline, Pelvic Pain can make it hard to find any pleasure in sex at all – and that’s not fun at all!

5. It’s Rarely Localised

The pelvic floor is connected to muscles and ligaments that attach to the hips, groin, thighs, buttock and lower back. Therefore, pelvic pain is usually accompanied by pain in these areas. Sitting or lying in a position that alleviates pain from the pelvis usually can increase pain somewhere else in the body.

Pelvic pain can also have an impact on bladder and bowel functions. Irritable Bowel Syndrome and Internal Cystitis also piggyback on other conditions I’ve mentioned above. 

When a girl’s gotta go, she’s gotta go! If my bladder is full, pain increases. Many Pelvic Pain causing conditions results in painful urination, frequent UTI’s and incontinence – the embarrassment just keeps on keeping on. Until a few years ago, going to the toilet was agonising because I had a lump of scar tissue between my cervix and rectum. And the longer I left it, the worse it got, so I avoided drinking fluids and was constantly dehydrated. I still have times when I experience sharp bladder pain, so on occasions, I use the disabled toilets – it’s not because I’m rude, lazy or inconsiderate – it’s because I actually need to use the bathroom ASAP.

6. It’s Expensive

If a GP doesn’t have the expertise to properly diagnose and treat you, referrals are necessary for proper care. You can’t just see a general gynaecologist, you need someone who specialises in your medical condition. You can’t just see a physiotherapist, you have to see a physio who has specialised in treating the pelvic floor. If pelvic pain impacts your sexual relationships, seeing a relationship counsellor who has experience in sex therapy can also be an expensive necessity for the longevity of the relationship. Medical appointments are expensive, specialists are even more so.

Yeah… so, please remember that vagina, clitoris and anus aren’t ‘naughty words,’ they’re just nouns describing body parts that 50% & 100% of the population have.

If you are experiencing pelvic pain, you’re not alone, there are others who understand the emotional toll it takes. I hope you can find safe people with whom you can be vulnerable and speak honestly about your struggles and frustrations.

Haven’t got Pelvic Pain? Be a safe person for someone who does. I hope that when you meet people who have chronic pain you are kind and compassionate… and next time you speak with someone who has pelvic pain, I hope you can empathise with the extra burden it carries. We already struggle daily with shame, taboo and awkward-turtles that come with Pelvic Pain, please, be a legend, listen with an open mind, don’t judge, empathise and be kind.

Have I missed anything? Please share and contribute to the discussion if I have!

If you’d like more information on living with pelvic pain, here are a few websites with helpful information:
Pelvic Pain Foundation of Austalia
Pelvic Pain SA
Australian Pain Management Association
International Pelvic Pain Society

A Night With Dylan Alcott!

By Caz Morton

Meet Dylan Alcott. Aussie Sport’s Champion. At 26 years, old he holds three World Grand Slam titles and three Olympic gold medals in two different sports… and his list of achievements are only growing. Have you heard of him?

He is a world champion tennis player and you can’t find his players profile on the official Australian open website – but don’t worry, you can hear all about Rogers new ‘dad beard’.

In the lead-up to the Australian Open this year, I am in deep hope that Roger wins another Slam, Novak fails and Sami doesn’t choke. I also wish I could watch legends Nova and Alcott play.

Both Nova and Alcott have much in common. They have both maintained seeded rankings and championship titles at the same time. They were both recently featured together at the Australian open ‘#ANightWithNovak’ charity fundraiser, where Alcott taught the tennis legend a lesson or two in the sport. When Nova was 26, like Alcott, he had three Grand Slams, 100 impersonations, was worth millions and had sponsors pouring thousands of dollars per week into his physical health.

However, there is a big difference between the two champions. Alcott was born with a tumour wrapped around his spinal cord, leaving him a paraplegic. But being a paraplegic shouldn’t change your perspective or change the game plan. These two men are equals, both athletes have had to be disciplined and work hard for their achievements. But, are both men treated alike?

Let’s take a step back! Do you recognise Alcott? Unless you are an avid tennis addict or keep up with para sports like myself, you probably haven’t come by him. At the same time, I do feel safe assuming already know who Novak is, without watching tennis or being a tennis superfan like me.

Why am I writing this? I would love to see the Australian tennis federation treat wheelchair tennis with the respect and the value it deserves. I’m not going to wave my pitchfork and expect things will change immediately. It was only last year Serena Williams kicked up a stink about equal prize money for women. It saddens me to compare the $3.7+ million the men & women’s Australian Open winner will receive to the amount allocated to the whole Wheelchair tournaments for 2017 – only $200 000. $200K is the kind of money an ATP or WTA player walks away with if they LOSE a quarter-final.

Is this fair? Sure, wheelchair matches are not as long as men’s ATP, but they still play up to 3 set matches, the same as women, and they use the same courts! However, change is not easy or simple. Alcott (and other wheelchair Quad athletes) deserve way more than media attention if the tennis federation is to make changes.

What needs to change? The consumer needs to care, so the media follows suit. I’m tired of hearing about Hewitt’s relationship issues! I’d want to see more exposure on wheelchair tournaments and to hear the player’s stories. I can’t believe we have a tennis legend sliding across global hard courts winning titles left, right and centre and we are going to miss it. I don’t want to miss it, so why would you?

When I was training at the AIS for gymnastics, I would run around to the display room and join in on the wheelchair basketball and failed every time. It was a good experience being physically limited as a child because it’s not something I’ve understood until recently. Even now, sitting in a neck brace, I have only experienced what he has for 10 days. I also know there is no nerve damage and I will walk again – praise God! I won’t compare my scenario to his, but my injury has given my “2017 Aus Open Superfan Experience” a whole new perspective. Of course, I will still enjoy yelling at the TV with my family and friends. I’ll keep tweeting random tennis facts and reciting stats about the players. But sadly, in my excitement that the Australian open has begun today (would do a dance but, meh, fatigued) is shadowed with the disappointment that I can’t watch Alcott slam it on the court because it’s not being broadcast mainstream.

As a Children’s Pastor, I would love my kids to watch Alcott´s journey on free-to-air TV too. They are missing on the opportunity to be exposed to a great Aussie hero. Do you watch tennis with your kids? Will you share Alcott’s journey this season and talk to your kids about athletes with similar stories? Maybe as you google for ‘trolls’ merchandise you could watch his TedX motivational talk on normalising disabilities to be found at https://youtu.be/tvNOzJ7x8qQt. This video has also made me wonder what we value as a society and how we teach our children about disabilities. Unless you live with one, or know people who do, you’re often not exposed to people with a disability – until you finally are. Do we have these conversations at youth group, are our churches accessible and pastoral towards this specialised area? I’m feeling another post coming on.

I’ve never been to an Aus Open Match. I’ve dreamed of seeing Feds or Serena in a finals match in Melb (oh, my first world problem seems minimal), but I’d prefer to hang out with mates. However, if an Aus Open opportunity came my way, I wouldn’t be passing up the opportunity to sit front row at Alcott’s match. After all, it is the only way I can see him play because mainstream TV minimises para-sport broadcasting!

Image borrowed: Victorian Institute of Sport, Athletes profile, Dylan Alcott.

16106174_10154127497870868_1400488620_o.jpgMeet The Writer: Caz Morton 

Adopted by Grace, adopted from Sri Lanka.
Past handstand queen & proud member of the fashion police.
Recovering spinal and sternum injuries.
Youth and children’s pastor in Wagga.
Follow@jeanellen on Instagram

Disgraced: Sydney Theatre Company

Yup, 20th show this year and it was wonderful!! The script was funny, the cast was great and one of my favourites, *Rose Byrne* certainly didn’t disappoint.

#sydneytheatre #speedtheplow #rosebyrne #theatrenerd #theatregeek #play#aussietheatre #sydneytheatrecompany

I’m very grateful I could have the theatre as one of my mental wellness strategies… and still 2 more shows to go. How will I top this next year? #ayearoftheatre, maybe? #mentalwellness #laughteristhebestmesicine (at Roslyn Packer Theatre Walsh Bay)