A Must Watch Video on Disability and Employment

The QLD Government released a video yesterday called ‘The No Pile‘ and you need to watch it! The video, co-created and performed by IndelabilityArts, an inclusive theatre company that I’m a member of, uses music and humour to address the issues people with disabilities often have when trying to gain employment, despite being more than capable of doing the job.

The video is part of the “All Abilities Queensland: opportunities for all” campaign launched by the Queensland Government this week and it looks amazing. I was so encouraged to hear that the development process of this plan included consultation with the people whom it would affect the most -people with disabilities. The state disability plan which will be rolled out over the next few years focuses on 5 area’s to make QLD a more inclusive state. These are creating inclusive communities for all people, encouraging lifelong learning, accessibility to everyday services, participation and leadership and improving employment opportunities.

People with disabilities can be completely capable of maintaining employment and excelling at itHiring someone with a disability may mean time flexibility for appointments or creating an accessible workspace. Unfortunately, this means employers usually exclude people with disabilities from employment at their organisation and the rejection excuses people have heard are ridiculous. ‘No Pile’ presents this sad reality in a humorous light because everybody has a role to play.

Watch the video, enjoy and share!!

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)

Urinetown #16

Musical #16 was #Urinetown by #brisbaneacademyofmusicaltheatre. I was so keen for a fun night of satire, corny ballads, political digs, beautiful harmonies, synchronised lady dancing, a high-energy cast and laughter with @emily_the_elephant_yo! So grateful to #bamt for showing off their talent to make for the distraction, an enjoyable evening and a new soundtrack for my Musicals Playlist! #ayearofmusicals #urinetownthemusical #musicaltheatre #aussietheatre #brisbanemusicaltheatre #theatrenerd #findhope #freetopee (at Harvest Rain Theatre Company)

Organic Aroma Essential Oil Diffuser Review

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I was excited to have been given the opportunity to try and IMG_0045.jpgreview Organic Aroma’s Nebulizing Essential Oil Diffuser. Unlike other diffusers, a nebuliser does not use heat or water, making it safe, convenient and mess-free. Because the oils aren’t diluted, the essential oils are well dispersed in a large room, offering a powerful, pure aroma and greater therapeutic value of the essential oils. It also doesn’t increase the humidity of the air, which is very appealing to someone who lives in a humid environment.

In the past, I have been quite sceptical about aromatherapy, but after some research, I saw that it could be beneficial for relaxation. Relaxation, meditation and mindfulness are necessary for treating and managing chronic pain, depression and anxiety.IMG_0160.jpg

Picking from all the beautiful designs was hard, but I ended up choosing the Raindrop diffuser. Shipped from the USA, it arrived a lot sooner than expected. As someone who likes beautiful things, I appreciate how well packaged it was – it was evident this I was about to try a high-quality product. It’s delicate and even prettier than the pictures on their website. I was also pleasantly surprised to have received two different samples of their essential oil blends. Talk about value!

Assembling the diffuser is as easy as placing the glass reservoir into the hardwood base and connect the power the supply… And because it’s gorgeous, I was happy to leave it set up in the dining room. Once the oil was in the reservoir and the diffuser turned on, it only took a second to smell the aromas… and I enjoyed it!

When I used the diffuser alongside other techniques, like deep breathing, visualisation and mindfulness, I was able to relax a bit quicker than usually. I really love the aromas and prefer it to incense, so after a few days turning the diffuser on had become a bit of a habit. Without thinking, I had turned it on while I was working on a major essay. I found myself super chill and relaxed when I would usually be stressed and anxious. As a result, I was even more productive.

The diffuser has an inbuilt light that changes colours, and I had seen pictures of this. I confess, I thought it looked kind of tacky. However, once I started using the diffuser, I found the slow colour changes of the light enhanced my relaxation. I would still like the option to turn off the light, though.

I was pleasantly surprised at how quiet the diffuser is and it uses a minuscule amount of electricity. Although I have nothing to compare with it, I’ve also been pleasantly surprised with how long the oil lasts in the reservoir.

Although I haven’t experienced any pain relief from using Organic Aromas diffuser, it definitely helps enhance relaxation and reducing anxiety when used in conjunction with other techniques.IMG_0141.jpg

All in all, I love my diffuser (and so does Annie)! I will continue to use it as part of my relaxation and mindfulness routine and look forward to experimenting with different essential oil blends (feel free to comment with any suggestions).

You can buy your own Nebulizing Essential Oil Diffuser from Organic Aroma’s website. The cost for a diffuser with an essential oil blend sample starts at $95 USD, and there are five beautiful designs to choose from. Organic Aromas also offers custom laser printed diffusers for $125USD and a large selection of stunning hand carved diffusers for $175USD. They also offer free shipping worldwide!