My Life As A Beanbag, or Aussie-In-Aspic. (A Lipoedema Survivor’s Tale)

I was fifteen when my bum arrived, so it seemed to me.

I’d always had one, of course, but I hadn’t needed to pay much attention to it because it had generally behaved well and according to the expected standard of most bottoms, keeping itself covered modestly by Australian 70s playing-under-the-sprinkler standards and not suffering as much punishment at the large square red flat hands of my irascible Mother as other kids seemed to cop from their Mums, sometimes aided by belts or wooden spoons, so I hadn’t felt much need to question it.

I definitely knew it was there, obviously.  It had been a thing to sit on unquestionably for over a decade. It had recently become an attraction for pinching, curious, groping fingers of high school boys unfettered by the childhood bonding they shared with my female classmates. I had been a new arrival from a regional primary school and my adolescent breasts and small waist, naivete & habitual lack of peers may as well have tattooed “Fresh Meat” on my forehead for the school corridor Lotharios to read.

The girls narrowed their eyes, wrote publicly of their dislike for me in circulated autograph “friendship” books & assumed I liked the boys’ attention.  I learned to.

Bums always possessed a strong comic element, of course.

Just the word “bum” was enough to attract tongue-clucking censorship in our home with the suggestion that “bottom” or even “derriere” might be slightly more appropriate term. Backside & arse were generally only expressed in highs or lows of temper or hilarity.

I’ve never seen either of my parents’ nude bottoms & a surprise comedic appearance by one on our black & white TV would inspire reddened faces and mutters of “That’s a bit much” ….although curiously, the recounting of the recounting by an aged Uncle of a daffodil substituted for a thermometer in a Carry On film was always accompanied by belly clutching tear-welling hilarity.

Now my own bottom was behaving strangely.

Fat legs, hipster benches and the Minister For Health.

legs recovering from 1st op, around September 2016
Work in progress. Already a hundred times less painful and so much easier to move around. Lumpy and bumpy but beautiful to me.
shoes off the rack
I’ll never be Kate Moss – but I don’t care. I can buy shoes!
Work in progress
A couple of months after second op and the difference from behind is very noticeable – and I can squeeze into ankle boots!
Where are my knees? Where are my ankles?
Day before 1st procedure for corrective surgery.
Side view of legs with lipoedema
Side view shows the overhang of flesh in upper, lower legs
Feet together?
Impossible to assume a normal standing position or gait while burdened with swelling, pain and excess fat and fluid.
Living with lipoedema
January 2016. 125kgs of misery, trying to put one swollen foot in front of the other one every day.
St Patrick's Day, 2017.
I had first operation – complex liposuction for lipoedema in August 2016 then another in December 2016. This is me, down from 125kgs to 101 kgs and feeling healthy.
I am a 47 year old Aussie and I have endured thirty years of lipoedema & secondary lymphoedema, but was only diagnosed in 2009 by a physiotherapist after decades of ignorance from the Australian medical community.
The last five years saw my condition deteriorate where I was practically bedridden, unable to walk without support most days due to swelling and constant chronic pain, with barely any recognition from GPs and no appropriately trained cosmetic surgeons in Australia willing to consult with me beyond first appointment.
All of these physicians were either uninterested or untrained – I’ve lost count of the times I’ve had to write down lipoedema for them because they have never heard of it or assume I am mispronouncing lymphoedema.
There are many cosmetic surgeons in Australia – their chief objective seems to be exploiting perfectly healthy insecure women for obscene profit whilst neglecting their most basic of oaths – that of a doctor to heal sick people regardless of their bank balance. It is no coincidence that the male-dominated GP & surgical community are wilfully ignorant about a condition that is devastating for one in ten women – you can’t cure it with medication, so no kickbacks to be made from Big Pharma political lobbyists and – it’s only women.
Lipoedema is triggered by genetics, hormonal events like puberty, pregnancy, childbirth & sometimes grief or trauma.  If it was 1 in 10 men it would have been cured back in the 1930s when it was first identified.
Lipoedema is a condition unable to be controlled by diet or exercise – go gluten free and totes Paleo as much as you want, you’ll still be unable to get up from the wooden hipster slatted bench in Carlton without crying out in pain from the sensations in your thighs and arse – and you’ll still be wearing the impressions of those boards when you go to bed that night.
Dress in your finest Lorna Jane (good luck finding anything below the waist that fits, including shoes that will lace up) and quote Michelle Bridges about BMI and calories in, calories out all you like, it won’t make a scrap of difference, you’ll just regret more money wasted on the hope that one day, with hard work and self-deprivation, you might look “normal”.
Swimming helps with pain, circulation & cardio – if you’re brave enough to wear a swimsuit as your thighs gently swing and slosh like a fat-shaming pendulum as other swimmers stare at the space where your ankles should be. Swimming feels great but it won’t burn lipoedema fat. Nothing does.
Thank Science, I found a specialist in the UK, Ms Anne Dancey of Birmingham, who has restored my quality of life. Ms Dancey has removed 36 kilos of lipoedema fat & fluid from my legs, over three ops spaced out over ten months.
I can now go on family walks with our dogs for miles, hold my 6yo daughter in my lap for a story without experiencing pain from the pressure of her weight on the painful fat and buy clothes and shoes off the rack instead of feeling like (and being treated as) an unsightly freak.
I can also return to the workforce.
I have had to self-fund these ops – I’m very grateful I am in a position to do so – but if it was up to Greg Hunt, Australia’s Federal Minister for Health, I would still be bedridden with a condition unacknowledged as a disability that yet prevented me from working or living a normal life.
I was expected to be in a wheelchair by the time I was 50 at the rate my lipoedema was advancing. Family tree research shows a gt gt grandmother’s obituary disclosed the last two decades of her life was spent as a bedridden invalid suffering from “rheumatic gout” who nevertheless maintained a cheerful disposition and comfort from her Bible.
Screw that!
Access to the corrective surgery techniques to restore quality of life to Australian women must become covered by Medicare and Australia must train more surgeons, GPs, medical staff, physiotherapists to become aware and offer appropriate treatment.
Greg Hunt’s twitter handle is @GregHuntMP. (So far any tweets or approaches by myself as a lipoedema sufferer toward the Australian Medical Association have remained unacknowledged.)
As Minister for Health and Sport, I’m sure Greg Hunt would be rapt to take this opportunity to address a serious condition and disability that affects 10% of women voters. His electoral office contact details are: Postal address PO Box 274 Hastings, VIC, 3915 Telephone: (03) 5979 3188 Fax: (03) 5979 3034.  His Parliamentary Contact details are Parliament Office PO Box 6022 House of Representatives Parliament House Canberra ACT 2600 Telephone: (02) 6277 7220 Fax: (02) N/A
Please, everyone, lobby all the goverment reps you know from local through to Federal, to raise awareness of lipoedema, the cruel effect it has on sufferers physically, emotionally and economically and to find financial and medical support for those who can’t afford to self-fund corrective surgery.
I would rather still be living in Australia with my extended family, living a healthy and productive life, paying taxes and being part of the local community where I was raised – instead the complete lack of support and accessibility to Health Services meant myself – and my money – went overseas to regain my health.
I’m currently living in Ireland as it was more practical than attempting major operations and long haul flights back and forth from a country that didn’t offer me any hope or cure for my condition.
I may never have been a giant asset to Australia – but I’m sure Greg Hunt, the Australian Medical Association, the sufferers of lipoedema and all those who work to support them in a climate of apathy would prefer the $$$ I spent to regain my health was spent in the Australian economy, not in a private hospital in Birmingham.
It is simply bad economics to drive Australians overseas for healthcare while your own standards of medical training and facilities languish behind that of other nations, not to mention the opportunities denied to lipoedema sufferers who can’t engage in work and community.
Imagine a future where our daughters don’t have to suffer the physical and emotional limits and lost opportunities from lipoedema – and a public health service that can proudly states it budgets the tax dollars it is employed to manage in a way that not only provides corrective surgery to those taxpayers and citizens unable to self fund corrective surgery and preventative healthcare (such as lymphatic massage, orthopoedic footwear & compression garments), but is capitalising on a massive women’s health issue that will train medical community to lead research and advance the medical field.
Women are currently flying from Australia, South Africa and other nations to access corrective surgery for lipoedema in the UK, Germany & the US.  There is no reason why Australia, who was once on track to be the “clever country” shouldn’t be leading the world in the field of lipoedema treatment and attracting those overseas patients to the benefit of the Australian economy whilst improving the economic opportunities and quality of life for Aussie sufferers and health providers trained to specialise.
(Bit of funding to CSIRO wouldn’t go astray either, while we’re at it).
This isn’t welfare giveaway for fatties unable to put down the Nutella jar. (Let me nip that right in the bud before you start, Miranda Devine.)
It’s an opportunity for Australian women and its healthcare “industry” that has positive outcomes for sufferers, healthcare providers and the economy.


Whipped Cream, Toothpicks & Air

The other day I saw for sale in our local supermarket “Whipped Cream” in a plastic tub for Two Euros.

We monkeys have nearly destroyed the planet with plastic bags & wrappers because we are too lazy to slice our own bread or grate our own cheese. People buy coleslaw washed in chlorine, teeming with listeria & bagged in plastic because supermarket advertising tells us no-one has time for chopping cabbage. (Also because wrapping everything in plastic means more barcodes, more automated checkouts, less staff, less wages and to Hell with corporate responsibility) Now we’re so lazy we would rather buy “Whipped Cream” with chemicals added than buy cream and whip it ourselves without the chemicals.

It made me think of that moment when the Douglas Adams character sees instructions written on a toothpick packet and decides to retreat to his outdoor hermitage because humanity’s descent into idiocy has become inevitable.

So, I bought the cream. (I was curious. Plus, all containers are recyclable. Thanks, EU.)

Then on weekend we were driving along and I was regaling long suffering husband The Fenian with the “whipped cream in a tub is my personal toothpick existential crisis moment” story when we pulled in to put air in the front tyre.

The service station air compressor was now coin-operated. Two euros. For AIR.

This was my husband’s personal toothpick existential crisis moment.

With a small difference. We have our own compressor in the boot. It was hauled out and used right there on the forecourt blocking the air & water stands by an enraged Irishman.

Anarchy in minutiae, but asserting personal power as consumers is a macro-Resistance.

It’s the little things.

Yeah, because there aren’t enough middle-aged white women bloggers….

I’m a dreadful procrastinator. I learned it from my mother, who was hemming my bridesmaids’ gowns while the photographer took pictures of me in my wedding dress.  Once she found, in a suitcase under the bed, a dress she had cut out and pinned together for me back in 1973. She’d moved house four times since then, taking the suitcase with her.  She finally stitched it together and it looked lovely – on my three year old daughter.

Better late than never.

I’m unpacking some baggage too, I guess, before it weighs me down and follows me around.  I should have done that years ago….