Tuesday 16 February 2016

Chronic crafting: Walking stick holder.

[Image: A black wheelchair sits on green grass. It has a red patterned seat cushion and a bright red walking stick holder on the side.]

I spend a lot of time swearing at my walking stick. When I blame it for my lack of coordination and it's tendency to throw itself on the floor should I dare to lean it against a wall or desk. But most frequently my potty mouth is reserved for when I am in my wheelchair, think I have it hooked on the foot rest, only to have it dive sideways, under the foot rest, or it's classic drop and get stuck in a tram track. The slightest bump or if I try to think and breathe, and it's gone.

Times I may have sworn at my walking stick include, but aren't limited to:

At a medical appointment where first meeting a doctor.
In the poorly insulated disabled loo where I'd just managed to make my unsteady way to the loo only to hear a loud THWACK as it hits the sticky tiles.
In the local clothes store when it became hooked on a long sleeved top and was wrenched from my side before my muscles can work out how to react.
In front of my inlaws and, small children.

Such swearing is apparently unseemly, and I fear I may be adding to the angry-disabled-with-a-huge-chip-on-her-shoulder-shouldn't-she-be-all-smiley-and-inspirational, narrative.

So in an endeavour to not let the disabled side down with my surly sweary attitude and because I am completely over it falling off my wheelchair I got my craft on to find a solution. Though in my own defence swearing a lot is apparently a sign of intelligence and trustworthiness, so here's my:

Michelle's Easy Stop My F**kin' Walking Stick Falling Off My Damn Wheelchair Tutorial 

You'll need:
  • 1 PVC pipe straight join
  • 1 PVC pipe cap
  • 2 metal hose clamps
  • Paint whatever you have lying around. I used Haymes Low Sheen Exterior in Carnation. But if you don't have any, a can of spray paint would make life easier. Just make sure it's a hardy exterior paint if you want it to last.
  • Paintbrush
  • Flat head screw driver

Step 1.

Head to your local Bunnings or other hardware store. Get lost in the million isles. Become overwhelmed with project ideas. Make a detour to the plant nursery and buy some more coriander that will proceed to go to seed and never grow properly despite your pleas and tears. Finally head to the right isle after Mr Grumpy starts to develop his FFS face.

Step 2. 

Have your walking stick with you so that you can make sure you are getting the right size parts. Look up at the amazing array of plumbing accessories. Start to feel slightly nauseous and grey because you forgot that looking up is not your friend, and hand it over to Mr Grumpy to grab pieces. Make way out of Bunnings with necessary craft items, doomed coriander, an impulse buy of five pots of instant garden colour and, yet another bucket.

Step 3. 

If you can, buy a can of exterior spray paint. This would make life so much easier. If like me you think, "Hmm I have some left over paint. That'll do." still get the spray paint. Otherwise you will end up swearing at the paint that wont go as smooth as you imagined as you went with the cheapo brush as it was "only a small project". Apply a few layers over the PVC pipe end and PVC pipe straight join leaving time to dry in between each layer. Don't get impatient and cock it up with finger prints or drop the piece that's all dry except for that one edge which just happens to be the edge that you knock against your good dress. Additional tip: Don't be lulled into a false sense of security because it's just a small quick job so you can't be bothered with the effort of changing into old clothes. Change. You/I will always drop something.

Step 4:
Attach each piece to the side of the foot rest on your preferred side. The PVC pipe end piece goes lowest to stop your walking stick falling through. The metal hose clamps come completely apart so you can wrap them around the pipe piece and wheelchair tubing easily. A second pair of hands or much swearing will help to hold the piece in place as you tighten the hose clamps to secure the PVC pipe parts in place.

A tail may extend from the rings. This is sure to catch on everything so remove if possible. My arms of patheticness are not up to the task so I am waiting on Mr Grumpy to fix.

Leave both hose rings a little loose. Place your walking stick in the holes to help line up both parts and to find an angle that works best for you. When you're happy with the angle and line, tighten up the hose rings to stop movement.

And there you have it. No more innocent ears being sullied by my swearing. At least not for this reason. Oh and obligatory Freyja photo as she's awesome, puts up with my swearing and loves the camera.


Walk/Roll this way depending on the day.

Wednesday 10 February 2016

Compression Stocking Review: Sigvaris 712N Allure 20-30 mmHg Patterned Thigh High Compression Stockings with Lace Silicone Border in Black.

[Image: a woman from the waist down wearing a floral skirt, compression stockings and black boots, in front of her messy bedroom with clothes and shoes strewn on the floor.]

I should add this is not a sponsored post (mind you I wouldn't knock one of those back. It would be nice to be able to pay for my own coffee just once). Nor is it an exhaustive list of brands and options. Instead, it is based on my personal experience, and for those considering compression stockings either for the first time, or those tired of the regular range of stockings and looking for a bit of spice in their compression wear. Your treating doctor should be able to advise you as to whether compression stockings may be helpful for the management of your form of Dysautonomia and the strength and type of stockings you may require.

Regular readers will know of my passion for finding fashionable compressions stockings. Frankly if I have to be sick I'll be damned if I can't be fashionable. I spend way too much time online looking at compression stockings. I search for anything that is remotely patterned or coloured outside of the traditional white, beige, black or navy blue. In the mid to high range compression (20mmHg +), it can be hard to find many options. Add in that cost of more fashionable versions can be prohibitive to many, and it can be hard to find practical and fashionable options.

I love my Juzo Soft compression stockings and have been wearing them for a number of years now. I have a range of colours and a fabulous tie-dyed pair which I wear on a daily basis (I may need a Juzo Soft intervention). But while they are one of the few brands to offer a broader colour range and tie-dye options, and sheer options, they do not offer any sheer pattern options. I have tried (see review here) and quite like the options offered by Rejuvahealth's fashion range but found that my legs were too long for the brand. After some searching I discovered that Swiss company Sigvaris, offer a small range of sheer patterned stockings. last year, with a function coming up and running out of time I decided to bite the bullet and try the

Sigvaris 712N Allure Sheer Patterned Compression Stockings

(Source: Sigvaris Allure Sheer Patterned in Graphite)

They come in two colour options: Black and Graphite.
Two Strengths: 15-20 mmHg and 20-30 mmHg
Two Heights: Thigh High and Full Pantyhose.

I chose the 20-30mmHg Closed Toe Sheer Patterned Thigh High Compression Stockings with Lace Silicone Border in Black.

They sit around the $92US mark at most online retail outlets (eg Brightlife Direct and Compressionstockings.com).

(The reinforced heel is darker but does not extend to a point where it becomes unsightly. As you can see in my ruby bow shoes above they aren't visible.)

I have now worn these stockings on a number of occasions and they have become my default pair for going out of an evening. As such they are well and truly road tested. I used to love my fishnets back before I developed Dysautonomia and these are a nice medical grade compromise.

(Obligatory Freyja shot)

They are a delicate pair of stockings. Even more so than the Rejuvahealth versions I reviewed last year. I was conscious of every rough patch of skin on my hands and spiky edge of fingernail when putting them on. Having said that I am yet to snag them yet (stumbles around touching wood).

(The band is pretty and there is a relatively smooth transition to the stocking itself.)

Each brand differs slightly in the band at the top of a thigh high stocking. The Sigvaris Allure had a reasonably smooth transition and is lighter than the Juzo Soft and Allegro products I've tried. It helps to keep the overall delicate feel of the stocking itself.

(A comparison of the silicone border of the Sigvaris (left) which is fine lines and Rejuvahealth (Right) which are dots similar to the Juzo Soft. You can also see the length difference in the pairs. Sigvaris are great length for long legs.)

(The toe is darker but transitions well. My feet are small for my height so they didn't stretch out the foot a lot so it was noticeably darker in the lower portion of the foot. 
It's a problem I've found with every brand I've tried.)

(Obligatory Freyja shot:
Dress is from Lazybones,
Shoes are Rivers,
Necklace and bracelet I've had for years.)

The Verdict:

I like them and continue to wear them though they do have some issues:

They have not maintained their original compression and are reasonably easy to get on now. They still provide more compression than say a 15-20mmHg pair but are noticeably laxer. Given their price point and that I have only worn them on special occasions, probably 8-10times at the most and only a few hours each time, I would have expected that they would have maintained their compression level.

The silicon top feels more precarious than initially, although they are yet to fall down. I haven't had a skin reaction to the silicone lines so far (stumbles around touching wood once more). I mention this as off and on I have had a reaction to the Juzo Soft silicone dots. 

After going over both stockings with a fine tooth comb I only found two tiny pulls. As such their delicate feel belies their durability. I live with a very touchy feely Great Dane and am unsteady and bump into things and fall on a regular basis when I'm not using my wheelchair, so they have been through a few trials.

The black dots are starting to fray a little but not worryingly so.

They have been washed multiple times in a lingerie bag on a cold setting in my washing machine using a sensitive washing powder.

They are a decent length if you have long legs. They are of a length comparable with Juzo Softs, and much longer than both Rejuvahealth and Allegro brands,

As you can see from the chart below they do have a short and long option.

Overall, I would buy them again, but only for use as a special occasion compression stocking.

Jobst do a similar version, the Jobst UltraSheer Pattern 20-30mmHg Thigh High Compression Stockings with Silicone Dot Boarder which comes in two colour options Black and Espresso. They fall in roughly the same price bracket as the Sigvaris. I haven't tried these so can't comment on how well they work or stand up over time.

(Source: Jobst UltraSheer Pattern in black.)


For more on compression wear you can check out:

Compressions Stockings from Beige to Brilliant Guide.

Rejuvahealth Review.

Allegro, Microfibre 20-30mmHg Black Thigh High Compression Stocking Review

LympheDiva Gauntlet Review.

Fashion blogging is not for the faint of heart

These reviews are always exhausting with the putting on and off of compression stockings and the up and down, getting dressed fighting off clingy Great Danes and warm Summer weather. But it's done! Now to collapse on the couch.

I've been listening to Sarah Blasko all day and I always have a wry laugh when I hear the lyrics "we wont run" as I haven't run in a looooong time.

We won't run, we can fight

All that keeps us up at night

There is far to go now
Let's not waste a minute more

Wednesday 3 February 2016

Come Away With Me: Beach musings.

[Image: A woman walks barefoot along the beach with her walking stick. Her head is down and she is wearing a large blue hat, pink floral dress and green cardigan.]

The parade of children on new bikes begins. Pink is a favourite. Closely followed by silver. A line of training wheels clack
ing along the slightly melted bitumen. The more experienced zoom past their brothers and sisters to do an effortless 180 where Beachcomber meets Meridian. Zooming back again to see if their younger kin had worked out the wobbling combination of trepidation and exhilaration. The populace, both holiday fly-ins and locals, walk by trailing towels and dogs. Brown and black, big and small, hairy and sleek. The more exuberant leading their walk-enablers. The rest walking contentedly next to their owners. I look for the rotund charcoal staffy we met on Christmas day. His body wriggling with excitement as he tried to squeeze under the gate to meet our very confused Great Dane. His gyrations made the Christmas bell on his collar jingle and gold tinsel glitter in the sun. And brought a smile to our faces. Boxing day has arrived and so has the procession past the window.

I watch them file past slowly, backed by azure skies and the green-grey tea tree and bottle brush. Their languid pace courtesy of the magic that is holiday time and the weight of Christmas overindulgence. My feet hang over the arm of the soft blue recliner. To tired to bother with the mechanism to raise the footrest. The blinds clatter in the breeze but I hardly notice. Closed eyes and muscles turned to putty over proceeding days my main focus. The sea breeze blows through the open door and flows through the house carrying salty notes and the sound of the waves.

We’re back at the beach. A friend has loaned us his house again. We were here for Christmas last year. For much needed respite and healing after a really rough year. And now we're back for a booster shot. The beach less than a 100m from the front gate means even a quick trip to watch the waves or drink a glass of wine as the full moon rises and the sun sets, is easy. We've transitioned smoothly from suburbia to beach life as if this has always been our norm.

Vera has traversed the path from beach house to dunes numerous times. Both packhorse and mode of transport. The crunch as she rolls testament to her time on the foreshore. She and I have bounced down steps and up to sink in deep soft sand. Husband and offspring content to drag and push at need. Or when it was all to hard I was carried or supported with a now oxidised and unfoldable Francesca. She too carries a new tone in her black tubing as we walk slowly down the driveway. A rush of sand and the tinkle of small bits of shell and larger granules with every movement. Lift, crunch and rustle. The sands of time falling in step with my dragging feet. Slowed and liquid the time of the sand and sea. Wild salt on southern winds preserving time for later need.

There's an ease in my heart that I haven't felt in a long while. Something about the salty sea air draws the ache from my soul. Pulls it like salt does the bitter water from cut eggplant. Draws the pain and fear, the exhaustion and melancholy. The, enough. Pulls it slow and sure as I am hypnotised into quiescence. The call of the gull overhead, or twitter of the blue headed wrens flitting on the grass just outside the window, whisper soothing words. The wind carries the bitterness from my skin. And I am refreshed once more.

Beach time is thinking time. It's easy to process the world while I'm there. Clarity is mine in a way it hasn't been for a lot of the proceeding year.

And now we are home.

Three articles have appeared in my timeline since I returned. And each seem to have arrived at the right time. They talk of ease, a move from well to powerful and authenticity. 

Ease is something I rediscovered on the sands. It’s something that I have on and off though I've never really named it before. Yet name aside I have been striving for it everyday. My body continues to be obstreperous. I sit here today sporting a hand brace after a fall. Everything I eat hurts and makes me want to vomit. The bone pain in my legs is back. And my bowels have closed for business. The list continues. And yet I'm at ease. Mentally, emotionally, and spiritually I am at ease. For the first time in a long time.

“…when I repeat the phrase, ‘may I live with ease’ during meditation, to me it also has another meaning – may I be at ease with my life, regardless of the circumstances. May I be at ease with the inevitable ups and downs of my existence, instead of constantly struggling against ‘what is’. This is not passive, or resigned – in fact, being at ease with our lives involves a very active engagement with reality, as opposed to clinging onto some idealised fantasy of how life should be…” (Anja Tanhane, Holiday Favourites - Living with Ease)

This is how I've been trying to live. My trek to the beach involved being wheeled from the house, down the road to the top of the dunes. My legs too weak to make the distance and my body unable to tolerate the expenditure of energy or time upright. I was unceremoniously carried up and down dunes and over soft sand. The only person on the beach with walking stick and wheelchair. Held in waves by my husband so I could feel the pull of the water and taste the spray on my lips. I could do nothing alone. Independence long gone. Such forays were curtailed by my recalcitrant body. I was nauseous and exhausted. In pain and unsteady. But the ease persisted. The weight of the last few months on it’s way out to the cold reaches of Bass Straight. Drawn as my body tumbled in the waves and taken by the undertow, to menace me no more.

O'Dwyer talks about ageing powerfully rather than well or gracefully. Her points regard choice and control, and much can be transferred to a life with chronic illness. 

"....there are no guarantees in life. Ageing is a crapshoot...But you can load the dice in your favour." (Dr Siobhan O'Dwyer, How to age powerfully - and what that means?)

[Image: A woman in red and white bathers and a large blue hat lies on a blue and white floral throw on a beach. Her trusty wheelchair sits behind her a clear blue sky overhead.]

I may be ill. But I can control many aspects of my life through the choices I make. We can have health and life in the context of illness. I can choose to be powerful by looking at all aspects of my life. I have gone back to Pilates. I can do very minimal exercises and only when lying down. My muscles refuse to coordinate and I have trouble initiating movements. Much of my energy expenditure is in trying to rope them in to complete a movement. But I'm there and I'm
doing it all the same. I'm trying to be better with my diet. Following the guidelines from my dietician to manage my defunct digestive system. I am making sure I do the little things that bring me joy, like chatting to my chickens or preparing my succulent pups for planting. I am back to scheduling mindfulness and simple yoga. There is a powerfulness in that. I will never have health as most know it, but I can maximise what I do have. 

I found my power again at the beach. I managed the basics of my yoga routine on a towel in the front room of the house. I watched the families walking buy and the yukkas rattling in the wind while I melted down into my savasana. My gaze soft and my breaths long and deep. The clean smell of salt on the wind through the flyscreens. Swirling overhead dispensing calm and clarity. I sat on the front porch and completed my mindfulness exercises. And I allowed myself to breath in my surrounds, while sipping on a forbidden wine or two, free of self-recriminations.

“…Knowing what those fears are, being vulnerable and facing them head on with your authenticity, will enable you to stand up and go in the direction that you desire…” (Helen Edwards, Why Authenticity is Vital to Your Happiness)

Being authentic doesn't please everyone and it shouldn't. I know some see me as a little eccentric. But there is something freeing in simply being yourself. There were stares at the beach. Our daily familial procession of wheelchairs and lifting, and unenthused Great Dane. As I walked on the soft sand at the waters edge cane at hand I received the double takes and whispers. Good or bad I don’t know. I was too busy having fun. When I wore bright red bathers with my pasty white body I didn't care. When I received a comment on Instagram “You look so stunning with a cane” I did a double take. What does that mean? That I shouldn't? That it's a surprise that someone may look okay and be disabled. That I don’t look disabled and ill? That in being myself I don’t fit in the established ‘look of disability/illness’ criteria? It was strange to think that my authentic self was somehow a surprise. Being ill has stripped away a lot of the shoulds. I don’t have time for that malarky. I do have time for me. And in making that time I have more to give. I’ll wear a mini in my wheelchair, I’ll sport blue hair and wear red high heels. I’ll watch scifi and horror movies and run far from rom coms. I’ll belt out Nina Simone's I want a little Sugar in my Bowl, and sing Prodigy’s Firestarter at the top of my lungs. I’ll put a disco ball in my bright red chook house and have a FUBAR sign on my desk. I’ll be “one of those lefty feminists” as I was called last year. I’ll simply be me.

[Image: A wheelchair with an eldest son's legs sits on the beach at sunset. The sand is golden and a blue and white floral throw sits in front of the chair.]

I’ll embrace me and my ease. I’ll be powerful and authentic. I’ll sit on an empty beach at sunset and watch the light fade and the moon rise with a glass of cheap sav blanc in a squat glass tumbler from a Belgian airline. I’ll collect more shells and pale drift wood. I’ll watch the sand swirl in the bottom of the glass and breathe it all in. I’ll breathe in me for the first time in a long time. And I’ll feel the lightness of being that comes from time away and the magic of sand, sea and wind.


Not exactly a beach song, but Norah's languid style feels perfect. My family call her Boring Jones and always paid me out for listening to her. When the boys were little I if they saw me running a bath and putting my candles up, clear indicator I was about to shut the door and relax for an hour, I'd get the chorus of "Are you going to listen to Boring Jones, Mum?" followed by great guffaws of laughter because they thought they were so so funny.