Canedy Crush

What is it that Ryan O’Neal and Selma Blair have in common? Not much I would think, although 6 Degrees of Kevin Bacon tells me it’s Antonio Banderas.

I am a bit late to the Selma Blair standing ovation that has happened this week in spoonie social media. For the non-spoonies that don’t know what I am referring to behold this beautiful portrait below of Selma’s first public appearance since she was diagnosed with multiple sclerosis (MS).

Selma Blair
Mark Seliger Instagram

A photo like this can divide the spoonie interwebs.  Is it inspiration porn, applying a fuss where one should not be made or is it a much-needed representation of chronic illness and disability? I personally found the images of Selma to be inspirational, not so much of the porny kind, but the courage kind.

The images of Selma that appeared each scroll of my newsfeed, and the feelings that came with, gave me cause to reflect on an interview I conducted almost a year ago, never seen by anyone other than my uni tutor until now. For someone who aspires to be a writer, I actually don’t like my own writing. I’m the Johnny Depp of words. Reading over my work gives me the cringes. Every journal I have ever started is now a blank canvas where upon closer inspection you can see where used pages have been torn from the spine.

With that in mind and a dosage of Selma courage, I have posted it here with the permission of the interviewee.

Rhino Neil.

I know. I know. That was a bigger stretch than a Jane Fonda workout VHS.

Canes

“How old is Neil?” I ask my daughter as we drive slowly down the dark street looking for the street number he texted earlier.

“I don’t know” Amelie replies, “Maybe Grandpas age? They hang out together a lot at camp”. Camp being the general term for Easter Camp where Seventh Day Adventists from around Western Australia converge into one large grassed parcel of metropolitan land to talk all things Jesus. I was raised as a Seventh Day Adventist, but left the church when I was 16. My daughter remains my Mums last hope to continue her legacy and has taken her to camp since she was old enough to attend Sabbath School. I loved camp as a child and see no purpose of denying my daughter the same experience based on my faith, or lack thereof.  She is mature for thirteen and has already worked out her religious leanings, but as it is for most kids Camp comes with a social life. She has put considerable effort into maintaining friendships with home schooled country kids that only come to the big smoke once a year and looks forward to their annual reunion.

Neil too is a Seventh day Adventist and is fulfilling his Christian obligation by giving up what little of his free time he has today to help me out with an interview assignment for university. This is what I know about Neil. He is a Seventh Day Adventist. He rides a motorbike. He is in a wheelchair.  The Sesame Street sketch One Of These Things Is Not Like The Other could be applied several different way to Neil, but it seems I have more in common with him than I might have realised.

“There’s his car mum” Amelie points to a large 4WD with the personalised number plates RHINO. Rhino is Neil’s nickname that I have seen more than once on my suggested Facebook friends list.  I thought it might have something to do with his size or strength. It’s in fact a reference to Ryan O’Neal, the actor. Somehow Ryan was attached the beginning of Neil’s name and our Australian drawl has dragged it out as Rhino. As someone who has named her child after a French film of the nineties I am more than familiar with how our accent can bastardise the most famous of names.

I grab Amelie’s backpack from the boot of my car. She has medical issues and accompanies me most places. Had I known my healthy child was going to deteriorate so quickly in her tween years I might have tried to find employment somewhere with a family sick room, or stayed in my failing marriage and attempted home schooling. I have somehow managed to maintain full time work and attend full time equivalent study to prepare for our future. She has managed to maintain A’s and B’s with only a 50% attendance rate at school.  I have no idea how. My Dad thinks we are smart cookies. My therapist thinks I have a slow cortisol leak.

We walk up the ramp to Neil’s door where we are greeted by his wife. She gives me a quizzical look of someone that thinks she might know me. I attended a Seventh Day Adventist school for year 11 and 12 as a boarder. While I haven’t been an active member of the church since I graduated in 1991 I seem to have left an impression. Dying my hair henna red and wearing a Cult band shirt on my first day seemed to set the tone for my sentence.  Getting kicked out of religion class for laughing when they made us listen to Hotel California backwards sealed it. She takes charge of Amelie by getting her comfortable in front of Foxtel with her own daughter, a few years older than my own.

Neil wheels out to greet us. For a smart cookie Amelie has guesstimated his age quite incorrectly. He is much closer to my age than my fathers. He has a wide gapped tooth smile and wears a black shirt with a logo that you would associate with a biker or at least a heavy metal fan. It’s only when you get close you can see the religious iconography in the detail. It makes me laugh on the inside.  For someone who has a biker for a father and a Seventh Day Adventist deaconess for a mother, Neil has managed to represent my parents in one Crazy Tee’s shirt.

He offers me a seat at the table and manoeuvres his way to the other side where there is another wheelchair.  I mistakenly think this is one of his that serves another purpose but he pushes it into the kitchen. “That’s my sons” he offers in explanation. Two wheelchair users in the house and I am starting to understand why they don’t have carpet.

Neil has Hereditary Spastic Paraplegia, an inherited neurological disorder that makes leg muscles weak.  Neil and his brother inherited the gene from their mother, who inherited it from her father who was adopted at a young age leaving the genetic trail cold. He motions to his daughter sitting on the couch with my daughter. “We don’t know if she has it yet”.  I look around at the obvious signs of renovation taking place in their home synchronising with his family’s changing physical needs. I think of the little unit that I share with my daughter and how much work needs to be done to manage ours.

Our home is small and was purchased from an elderly man. I often joke that its size and location close to town was a choice based on my retirement needs a few decades in the future. It wasn’t. It was based on what I could afford when I left my marriage which wasn’t much. However, it turns out we needed a retirement style home sooner rather than later.  I have a degenerative auto immune disease where my body attacks its own joints. My tour of duty in a wheelchair was brief and I survived with a cane for a few years. Once my specialists figured out the right drugs I was back at yoga and performing questionable improvisational dance moves after too many glasses of bubbles at book club. Classic moves in both modern dance and drowning my fears of the future that was being suspended by modern medicine.  While I have plans to install a handrail in the shower and lower some counter tops the only evidence of the elderly man that lived there before is the handrail in the toilet. This is where my daughter spends a large amount of time with catheters, wipes and hand sanitiser.

Amelie has had bladder and kidney issues since in utero. A routine ureteral stent procedure turned into a much longer surgery when her doctor discovered some bladder abnormalities. The surgery then resulted in chronic neuropathic pain where she lost the ability to walk and use her bladder effectively. We began the journey of self-catherization and picked up a walker from Gumtree, which we then pimped up with some scooter wheels and sewed a new chair cover in Day of the Dead skulls. The chair was named Vera, after its previous owner. Vera has been out of commission for a little while now and resides in my parents’ spare room just in case. Such is the nature of neuropathic pain.

Neil’s son Josh limps into the room looking every part his father’s doppelganger. “He is a lot more active than I am” Neil offers as explanation for his son walking and not using his chair. There is a graduation of walking aids that Neil has been through and that Josh will experience. First was the cane which Neil states “I hated that cane. It represented everything that was wrong with me”.  After the cane was crutches. Then came the wheelchair. Neil’s current role is working with disabled members of society for Adventist Care. I ask how he feels about his wheelchair in that environment “It’s an asset. I would put it on my resume if I could” he grins. I long for his optimism. Is it time? Experience? His faith?

On Saturday 29th April I am sitting in my GP’s office. I had a regular appointment but have woken up not being able to breathe properly. My lungs hurt. I am taken to the closest ED and administered some anti-inflammatories that help a little. My long-term medication is an immunosuppressant that slows down my body’s over-eager response of attacking itself, unfortunately, over the last few months, it has let some other bugs in. Mostly shingles. In my nose, in my eyes. Now they think maybe my lungs.  An MRI or two later I am given the all clear for shingles. But my rheumatologist has some other news. “It’s Fibromyalgia”. Being a regular on the chronic illness forums I know enough about this one. It’s painful, there is no cure, lifestyle choices reign supreme. Further to my diagnosis, I am also being taken off my improvisational dance move drugs to give my body a break.

It only takes a couple of weeks. I go through the back of cupboards looking for knee straps, liniments that are mostly expired. The swelling is quite rapid. It has been years since I experienced it and wonder how I managed with a toddler when this was my previous normality. I am building a pile of arthritis goodies on my bed preparing for the weeks ahead. But there is one thing missing. In my wardrobe on the top shelf. Hidden with old x-rays and some fancy dress items. I feel around, I can’t see that high but tippy toes on my good leg lets me reach a little further. I grasp its cool surface and give a tug. My cane. I hate this thing. It represents everything that’s wrong with me.

April 2018.

Ableism is a term most people would be familiar with, in a nutshell, it is discrimination and or prejudice against people with disabilities. Recent reflection would indicate I have been battling a minor form of internalised ableism. Described perfectly by Disability Rights Bastard as “A practice where disabled people internalize the ideas and prejudices of society that see disability as ‘other’, as something undesirable, as tragic and as something to be shunned if not pitied. This in turn results in the disabled person loathing themselves and their bodies.”

I have cane shame. I would never think twice about another person requiring a mobility aid, yet I don’t apply this value to myself. I believe this is an issue shared by some people with late-life diagnoses, especially of the gradual deteriorating kind. The kind that Selma has. The kind that I have. My fear of my cane stems from my disease winning. It represents something that is beating me. I am somehow losing a battle. Losing independence. Losing income. Losing quality of life. Losing friends. So much loss.

Images like Selma’s don’t reinforce loss but give gains. Not dude bro gains, acceptance gains. Maybe my cane isn’t representative of my illness but simply a necessary accessory on the red carpet of life.

But I’m gonna need a cape.

Selma Blair - Getty Images
Getty Images

 

 

 

 

 

 

 

 

 

 

Funding and Games

This week while running into the local IGA supermarket for some ice cream, *coughs* kale.  I made super quick eye contact with a fundraising individual right near the entrance. This is something I try to avoid. Don’t get me wrong I will support many a cause, but the methods that these outsourcing agencies go to get a regular direct debit out of your account are extreme. By the time I have managed a trip from one end of the mall to another I have signed up to save bears, whales, cured cancer, sponsored a couple of children, lathered myself in an exotic cream from the Dead Sea and subscribed to Foxtel. I just can’t say no, even when my bank account does.

Fundraising got BOLD in the last few years. No longer is it a tin can and a cheeky sticker. They have EFTPOS, payment plans and they go in hard. “Can you spare $100 a month?” Erm. Can you see my shirt with non-ironic holes caused by moths? “What about $75,  we take it directly out of your account, you don’t need to worry about a thing”. Except maybe the gas, electricity, phone, internet, mortgage, car payments also coming out that day?
I will always give, but only within my means. And usually, the first 10 options are not within mine. I go straight to the bottom of the list. $5. Maybe $10. Okay, sometimes $20.  This particular one though was a raffle which is less commitment and was for the Australian Paralympic team. You just can’t say no to that. Because that would make you a douche canoe.

I have never really dug the Olympics, too Sporty McSport face for me, and it only ever represented a gap in the Grays Anatomy plotline for the year. Meredith and McDreamy will they or won’t they, will they or won’t they. For those playing at home they did, didn’t, did and didn’t then someone died, or something. They lost me at Cristina Yang’s departure. However in 2020, based on what I have learned outside the IGA supermarket I am going to get inner my jock on and throw a little support behind our Australian Paralympic team. This is not about disability inspiration porn, but inequality in funding which just is not cool and not that uncommon in Australia.

A $10 million funding boost was offered up for Australian Olympians and Paralympians by the Australian Government in December 2017 in preparation for the 2020 Tokyo Olympics, but when you look at the fine print, our Paralympians will be again getting crumbs as the published list only includes para-canoeing and wheelchair rugby in the bonus round. Our Paralympian team in Australia is funded largely by a non-government agency the Australian Paralympic Committee, while their able-bodied compadres come under the Australian Sports Commission, which sits under the Australian Institute of Sport which is wait for it.. totes government funded.

kurt fearnley - australian paralympic team facebook page
Kurt Fearnley Photo: Australian Paralympic Team Facebook Page

Now, as the charming fundraising gentleman explained, the cost of getting a Paralympian to Tokyo in 2020 is going to be substantially more than an able-bodied athlete due to medical equipment, transport and accommodation for carers as well as a medical hub. So you would think that their government funding per person with said needs would be a teeny bit more. Not so. While the figures and costings for 2020 aren’t in the public domain just yet Rob Flude over at The Final Whistle worked up some costings from the Rio Olympics in 2016.

In the 4-year build up to Rio, the Australian Sports Commission (ASC) – through the government’s organisation, the Australian Institute of Sport – has funded Olympic sports to the tune of $377 million (422 athletes plus support staff) and Paralympic sports about $62 million. On a per-athlete basis, Olympians, therefore, receive more than double their Paralympian equivalents .

Rob Flude

But the medals and the faaaame…

Is it a return on investment? Sure able-bodied Olympians are probably more well known, although I personally wouldn’t recognise an Australian Olympic swimmer unless they were in their Bonds undies in a magazine. So let’s have a little look at where we are sitting in the tallies.  The Rio Olympics had Australia sitting at 10th place with 8 gold, 11 silver and 10 bronze. On the other, much harder to find tally, our Paralympian team came in 5th place with 22 gold, 30 silver and 29 bronze. I’m crap at maths and not that mint with investments but come on. Our para-athletes are crushing it!

My moth bitten shirt and broke ass weren’t quite able to meet the $1500 to fly a Paralympian to Tokyo in 2020 or even $50 for physiotherapy, but I did cough up enough for a pin, a reminder and a self-promise to bang on about it for the next two years. So how can you help?

You can make a donation and make some noise.  Do you have some clout in the workplace? The APC corporate program can create a team building day. Having an event? Get your keynote speaker here! Way more interesting than that cooking/marrying a stranger/renovation comp C grade celeb Karen from accounts arranged through her cousin.

Or be like me and get a cool pin and a chance to win $65,000.

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Photo of a pin supporting the Australian Paralympic Committee with words “Believe and together we are invincible.”

 

MJ x

 

 

 

 

It’s not about the money, money, money..

Actually, it really is.

One of my New Year goals is to get in better financial shape. In Australia, that means following the advice of our monetary Marie Kondo. Scott Pape – The Barefoot Investor. He is at guru status now, still holding on to his title as Australia’s best selling author.

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Book cover: The Barefoot Investor

For those playing in other countries, he is the Australian equivalent of Dave Ramsey, but keeps his money in banks, not envelopes. I recommend this for any spoonies with brain fog. I still open books and find dollar dollar bills ya’ll that I have hidden in a moment of impure genius. Banks, much safer.

Pape’s system is to have “buckets” to divert your income into. 60% for Daily Expenses, 20% for a Fire Extinguisher to assist with emergency and savings, 10% to Splurge on your own good self and 10% to work on your future Smile. Not dental bills but dreams. Like Bora Bora. He also recommends that you do all of this planning on date nights. He had me at Mexican.

I don’t use cash. I’m financially independent so I don’t need to. I’m the only person that gets to cringe at my bank statements and the amount I spent on coffee and biscotti. So for me, it is quite easy to see where every last cent goes by downloading my banking history into an excel sheet, sorting by merchant and hiding all KFC transactions and pretending that never happened.

This is where it gets a little different for spoonies. Medical needs are daily expenses, but if you include them it’s going to mess up your ratios. If they are like mine, combined with my daughters, they fluctuate enormously. Unexpected ones technically could come from your Fire Extinguisher account, but what if your oven breaks down the same day as a brain MRI is ordered? In Australia, we have exceptional health care courtesy of Medicare and the PBS, however my out of pocket expenses last year could have funded a lovely first class ticket around the world. Or you know, go towards my mortgage.

Like all gurus, the Barefoot Investor has many groups of followers on the Book of Face and they are often a source of great wisdom. HOT TIP: never start with “I haven’t read the book yet but…” the collective eye-roll would be felt at Zuckerberg’s open plan hot desk.

Taking my financial woes to my personal favourite Barefoot Facebook group it appears that I have missed a pretty important subsidy to cover catheters under the Continence Aids Payment Scheme. At the time of entering the world of our new normal, I was assured that we wouldn’t qualify for anything. I had a cursory glance and trusted the professionals.

This is a Barefoot no-no in the world of finance and must be applied to more than our interest rates. We should be doing regular check-ins, we should be lobbying for change, we should scrunch dry our “may I speak to the manager” haircuts and ensure we are getting the best possible deal. Government budgets change often and we should be setting minimum yearly pulse check. On our health finances, not the Government. That caper is Weekend at Bernie’s enough.

So today in that spirit, mine not Bernie’s, I will be putting in an application to relieve some of the financial pressure we face as a duo spoonie household and diverting that money to a first class ticket to Bora Bora.

I mean, the mortgage.

But if Scott isn’t reading – totally Bora Bora.

MJ

I said a hip hop a happy to the new year

And unpause.

Well hello fellow Kickers and Hoopers. As mentioned in previous posts Kicking Hoops started its life as a university assignment, but in time it became more of a pet project. Now the semester is over, the grades are in, and it’s time to get back to work.

Today was my New Year resolution start day. January 1 is too much pressure as I am often still on holidays and you would have to pry the camembert and prosecco out of my cold dead hands before the camping chairs are packed away and the sandy washing is finished. This means my resolutions also coincide with my first day back at my day job, which can be limiting in itself when first-day exhaustion sets in. My gym bag remains packed under my desk at work, but after this blog entry, I will be partaking in a little bedtime yoga courtesy of Yoga with Adrienne on the old Tube of You. Balance.

I have set many goals for this year, I am a sucker for a resolution or ten and figure the more I start with, the more chance I have at achieving a few! This year will be a little more relaxed as I look for hacks for a healthier sustainable lifestyle that will keep the inflammation and stress at bay and spoons in the top drawer.  You should have seen what I managed with some tinned tuna, microwavable rice and a packet of salad for dinner tonight to avoid a take away drive through. (In fact, you just might on the socials once I can get the hashtag down from #tinnedtunamicrowavablericeandapacketofsalad).

Nothing in Kicking Hoops is going to be perfect, even of the Insta kind. It may not always work out as planned, but I will persist in finding other ways to shoot my goals and have some fun doing it. I hope you come along for the ride, find some inspiration, share some knowledge and shorten my hashtags.

neil gaiman

MJ (2)

The B Word

Benign.

The relief is incredible.

It has been a week after having my easy bake oven removed in quite the unexpected hysterectomy. I am now on bedrest, able to breathe and collecting my thoughts over the week that was and catching up with my Real Housewives friends of the OC variety. Fortunately, there was nothing insidious in my results, and after a few weeks, I should be back on the paddleboard board minus some core muscles.

The last week’s wait has highlighted that I need to get my houses in order, physical and metaphorical. I don’t have a current will, life insurance has been on a to-do list since Luke Perry was a boy and while I have the financials kind of organised thanks to the Barefoot Investor and my Mojo savings account. I really should have been in a better position for an emergency where I won’t be able to attend work for a period .20/20 hindsight.

I share my home with my teenage daughter who also has a history of chronic illness, and despite having the same employer for five years, my leave is eaten up with illness either for my flares or hers, her appointments or mine. Just like Lunch Money Lewis; I got bills I gotta pay. When I decided to go on this journey solo and leave my marriage with an illness, I was very future focused. I have bought my small retirement home first and will be renovating it for accessibility. I study in an area that will give more flexible work arrangements. However, I have projected so far into the future that I haven’t set up my back up plans, for now, next week or next year.

A Sociomedical Profile of Rheumatoid Arthritis states that “Work disability appears to be the most important sociomedical impact of rheumatoid arthritis since it is associated with significantly greater income and psychosocial losses.” While I am still very mobile and my pain and inflammation is being managed, in the last year alone I have required three separate MRIs, brain, pelvis and spine. Countless imaging appointments. A handful of CT guided injections. Regular and emergency appointments with rheumatologist and GP, a trip to Emergency – thankfully not via ambulance. When you combine this with my daughter’s unrelated chronic illness, appointments, school absences, medical tests and surgery my leave entitlements are eaten faster than cookies by the Cookie Monster. Nom nom nom nom. And of course, these all cost money. I have fortunately located a bulk billing imaging centre that also can administer injections. Thank you, Medicare! While I do get a reasonable amount back from private health and Medicare gap payments, bar MRI’s it really adds up. It’s probably a good thing that I don’t have holidays accrued as I can’t afford them anyway!

However, I can get smarter, comparing life insurance and health insurance, early access to superannuation, saving more effectively, I have tools and resources. Fortunately, I have four weeks rest giving me plenty of time! This un-regularly scheduled health issue may have been brought to me by my uterus, not my joints. But as a spoonie. I should have been more prepared.

Jack Canfield

The C Word

Before I start – this blog is a university project. I am studying a Bachelor of Arts with a double major; Internet Communications and Professional Writing. In a past life I was a blogger with a little following and this assignment has reminded me of how much I enjoy it. Along with some of my peers, I will be making the odd non-graded, not so grammatically correct entry now and in the future, and expanding the basis of the blog. Mostly for myself as an accountability exercise and to communicate with the extended spoonie community.

In my RA life I have had the greatest fortune to have biologics treatment. Without it I don’t believe I would be walking — but it does come with risk. When I was first prescribed biologics I was warned by my Rhuemy that it can increase the likelihood of cancer, especially skin cancer.  The epic Photoshop job I have done on my avatar hints at what I look like IRL but I resemble an older version of Pippy Longstocking. Ginger twinges and freckles for days.  The good news is that research over the last few years has indicated that the risk is not as high as once thought and that it may be our chronic inflammation that increases our chances of cancer. Either way, we still need to be mindful and pay close attention.

This is where I have made a bit of a boo boo.

One of the symptoms I have is chronic hip pain. Most people with arthritis will have it and we apply our lotions, get injections and go on living. While my other symptoms have waxed and waned, the hip pain has been persistent and worse.  At my last visit with the Rhuemy he was perplexed as to why it was still happening. MRI’s and scans were okay. When I pointed to the region where the pain comes from he wanted to check my ovaries for referred pain.

Some more internal *shudder* and external ultrasounds and cat scans show that I have fibroids scattered about the shop but one large lesion or mass where the pain is. We are super hopeful that is just another harmless fibroid and I should have an answer to that very soon.  Hopefully today.

I am quietly shitting myself.  I caught an interview on Life Matters during this process about ovarian cancer. It’s a scary mofo with not great odds with a max of 5 years, and as a woman, I know very little about it. I check my boobs, I get the schmears. Ovaries? I dunno ¯\_(ツ)_/¯ Aside from the catch and release, I’m not that up on them.

What gets me about this whole scenario is that because I put so much down to symptoms of my disease I may have missed something. Something huge. Like a tennis ball. Ok so not that huge, but huge for your insides.

I have an appointment today with a gynaecologist oncologist, one of only two where I live. Give it up for private health insurance.  Today’s outcome could be anything from a pat on the head to a surgery which could then result in a pat on the head or a timeline.

In my head, I have prepared for every scenario including the clichéd bucket list. Dramatic I know.

But this is something that I have learned this week. My life is affected by chronic illness and the point of Kicking Hoops is to inspire to make the most of it. I have an acute understanding that my life has limits, whether it be activity, travel, where I can live, what I can eat. This week has reminded me that life is finite and I have not been treating it that way.

  • Why aren’t I living near the beach – or at least saving for it.
  • Why am I spending money on takeaway coffee rather than holidays?
  • Why do I worry so much about what people think?
  • Why do I have so much crap?
  • Why don’t I rollerskate?
  • Why so serious?

I look back over the last few years and all I can see is wasted time, money and opportunities. No matter the outcome today I want to hold on to that fear—but perhaps dress it up as knowledge— and start living my life, for me and those that matter.

A beautiful friend who also had a c word scare recently was explaining to me about how her perspective on life has changed.  She referred to her life as her little life and how her primary focus is about her family, and the little things she gets joy from. I hope like her this is nothing more than a scare — but that like her, the lesson remains.

I also hope to be living in a beach house.

Note: I wrote this yesterday. My appointment didn’t give me the answers I wanted and I am scheduled in for a hysterectomy next week. I will have results a week later.

This is my Shitless List I wrote in the waiting room. I don’t like cliches.

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MJ (3)

Forest Bathing and Dr Who

If there is one thing we can trust Scotland to get dead-on it is the best Doctor. David Tenant — am I right?

Time Lords aside, the other doctors in Scotland of the GP variety have recently teamed up with the National Health Service in Shetland to prescribe nature to patients with chronic illness. Along with their scripts and tips, patients will be given a list of seasonal activities to complement their treatment in a non-drug effort to reduce symptoms and assist their mental and physical health.

This October our Scottish friends are being encouraged to help their neighbours with their tatties  (potatoes- I googled) and to find a “grottie-buckie” on the beach.  Here in Australia our tattie seasons are a little different and we call our grottie-buckies cowrie shells, but the sentiment is the same. Find a reason to go outside, and in the words of my mother. Stay there.

We Spoonies are well aware of the benefits of nature for our various afflictions and are often told to head into the great outdoors, however, it can be a bit of a struggle to move out from underneath the blankets and the heat packs and go outside – where there is no Season 3 of The Good Place. Walking aids are a hassle, walking itself can be a hassle. There are people out there.

I am fortunate enough to live right near many walking trails and have been interested in the Japanese concept of Shinrin-yoku or Forest Bathing for a few years.  The great thing about Forest Bathing is you don’t even need to move that much to get the benefits. Simply sitting and immersing yourself in nature a few times a week is enough to feel the benefits and a trip to the local park is as beneficial as the Amazon Forest — with the added benefit of no anacondas.

Forest Bathing
Rocky Pool Walk – MJ

As a part of Kicking Hoops and Shooting Goals I have added hiking to things that I totally do now and I love it.  I’m nerding out on wildflowers, checking out walking poles and actually peopling with strangers. Hikers are a chatty bunch.

As per the point of Kicking Hoops I am only doing what I can with what I have got. It depends on the day and it’s at my own pace for me. 5 minutes of sitting counts as much as 5 hours of walking and on some days the sitting will serve more purpose. Really it’s all just a big ball of wibbly-wobbly… timey-wimey… stuff anyways.

Allonsy!

MJ (3)

 

 

 

 

 

Side Selfies and Word Porn

The Internet is the gift that keeps on giving.  Lolcatz and Grumpy Cats, the home of Chuck Norris facts. Challenges involving cinnamon and ice buckets, dubious dance moves of the dabbing and flossing variety.

In addition to the memes and the challenges — and the dances banned from my house — the World Wide Web also provides us with a global community where we can share our experiences with chronic illness. It’s an isolating experience where our friends and family don’t quite understand (as much as they try), however international strangers can support you in a virtual intimacy that is hard to replicate in our everyday reality.

Our social media groups are not for the fainthearted.  Administrators pop into threads exclaiming ‘Gentle reminder, we aren’t medical professionals!’ while we all plough on comparing lumps and bumps, pulling back eyelids to show the latest uveitis flare, rashes and bruises around injection sites. Ankles spill over trainers and kneecaps are lost in swollen joints. TMI warnings reserved only for boobs, bums and nudie time dysfunction.

A common sight is the side on selfie, or the written post equivalent. This is when a Spoonie is at breaking point, comments are of the ‘gentle hugs’ variety, Snoopy is the current GIF du jour and we all lament together about our awful diseases. Suicide posts are common and members rally to find a poster’s location if our R U OK messages are unanswered.Continue reading “Side Selfies and Word Porn”

But you don’t kick hoops?

I know right? Don’t let the avatar fool you. I don’t play basketball either. Shooting some b-ball after school doesn’t mean much to me outside the theme song from Fresh Prince.

I developed the little adage ‘Kicking Hoops’ as a reference to my lack of sporting prowess that has plagued me since childhood. Somewhere in a box at the back of a shed is my year one school report which contains the actual sentence: ‘Mary Jane’s throwing and catching skills leave a lot to be desired.’ While I don’t subscribe to the notion of participation trophies for the athletically challenged like myself, I feel that as a 5 year old my teacher’s words are what Cher in Clueless would have dubbed as ‘way harsh’, convincing me from an early age that physical activity was not in my future.

So aside from dabbling in yoga and recently taking up lawn bowls, my first real team sports participation — swayed mostly by bowling club beer prices — I have largely avoided all things Sporty McSportface as a participant and a spectator. While this is mostly due to disinterest, it has remained in a state of dormancy due to a complete lack of competitiveness.

This was until I met the competition. My competition is my illness. Basketball players might have the large scoreboard with the digital timer but I’m dealing with a sands through the hourglass vibe in a race against time.

Over ten years ago I was diagnosed with Ankylosing Spondylitis (AS), an autoimmune form of arthritis which causes inflammation of the joints, affects mobility and causes levels of pain that would make a circus strongman cry. It is not only restricted to joints and can affect organs, in my case my eyes and lungs.

To make matters worse autoimmune diseases come in collections. If you have one you can almost guarantee there is another stalking it. My second and most recent addition is Fibromyalgia which in a nutshell is more pain with the added benefit of fatigue and brain fog.  Technically it’s not autoimmune but it does like to cosy up to arthritis and is prevalent in our community. #Twinning.

Along with some pretty nasty drugs that range from chemo to injecting immunosuppressants, a key focus of pain relief and disease progression is exercise. It was my Fibromyalgia diagnosis that inspired my ‘game on moll’ moment and now my previously sedentary arse has to start moving whether I like it or not.

Sporting activity has never come naturally to me but I refuse to let this illness “win”. Any gain I have to me is ‘kicking hoops’.

I will fall, I will fail but I will be winning.

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