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.

Michelle

Walk/Roll this way depending on the day.

De Ja Vu: A man stands from his wheelchair and Buzzfeed decides to perpetuate abelism.

[Image: woman standing next to a wheelchair and holding walking stick. Same image is repeated in four coloured squares]

This is a reworking of an old post as this issue comes up again and again. De ja vu from Buzzfeed this time. Ignorant abelist crap and objectification of a person with disability as an object of mockery because they stood from their wheelchair. 


I'm tired. Tired of having the same conversation, about the same issues. Year after year after year. Back when I started this blog in 2009 I was discussing the hurtful comments challenging the validity, or existence, of illness. I have banged on about the whole myth of the look of illness and challenged perceptions about what constitutes disability. I have written so many posts on the topic that I couldn't even pick one to link up. And still, nearly 7 years after I first pushed publish, posts like today's ableist trash from Buzzfeed A man stood up out of his wheelchair after a Roger Federer Miracle shot  (although they are not alone as other outlets such as The Daily Mail Australia also thought it was hilarious), are doing the rounds of the Internet on a regular basis. And people continue to find them funny.

A man in a wheelchair stood up when Roger Federer hit a great shot at the Australian Open, and he became the subject of widespread mockery. A man went out to an event using a wheelchair for reasons only known to him. He enjoyed his evening and dared to show his excitement. And people decided he was fair game for mockery. Because disabled people, especially those who don't meet false expectations of disability, are by their very existence, fodder for jokes.

When I write an article many readers tend to relate to the issues I discuss. They have had the same experiences and the same reactions: hurt, anger, frustration, an overwhelming desire to resort to violence. But in many ways this is preaching to the converted. Those who read predominantly share the same views on these topics. But in the wider community it seems that little has changed. 

This "miracle" and "cure" joke, is doing the rounds, again. Because an ignorant and ableist journalist, although I use that term loosely, fails to understand that many wheelchair users like myself, aren't paralysed. Not only that, he trolled through social media to find gifs and tweets from fellow ignorant ableist citizens to share and enhance the hilarity. And what disappoints me even more, a Buzzfeed editor gave it a stamp of approval and it was published. 

The journalist and the posters, have not taken the time to think about the message such an article sends to friends and family who are living with illnesses that don't meet the limited ideal portrayed in the media. It also says a lot about how society, including a major internet site that claims to care about various isms, continues to view disability and illness in this day and age.

It says your illness and your experience is a joke. When they laugh at such an image they are essentially saying you, your illness, your challenges, pain etc are meaningless. When those who use a wheelchair but can still mobilise independently over short distances see such an article it is hard not to take offence. We know the mental and emotional challenge it can take to simple accept the need for a wheelchair. That we have internalised abelism that we must fight every day. We know that a wheelchair means difference at an age where most are simply out living life, starting careers, studying, having children or travelling. We know that every time we head out into the world someone will find our life a joke. Or, if you are unlucky enough to be this man, you and your situation, become a beacon for global for mockery.

I can say we shouldn't care. 

I can say we should simply ignore this article and others like it.

But sometimes no matter how stoic we are, such attitudes cut deep. 

And frankly, why the hell should we have to put up with mockery and disrespect on top of having to live with disability or debilitating illness?

Those who have not personally experienced serious or prolonged illness; who have never known the challenges of disability or seen how they affect a loved one, seem to still find the whole experience as nothing more than fodder for laughter.

What is lacking in our culture that many feel they have the right to mock, judge, or police others, for circumstances they don't bother to understand? When did compassion and minding your own damn business, get replaced with picking others apart for sport?

The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). 

The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps. 

Without my wheelchair I would rarely leave my house. Without my wheelchair I wouldn't shop. I'd never go to a gallery or a market. Or even attend many medical appointments. I have even been known to use my limited energy to push myself up from my wheelchair to grab a product from a higher shelf. I could very easily have been the man in that article.

If those who laughed at the article, or mocked others in the community for standing from their wheelchair, took the time to speak to the person in question they may find that they are recovering from surgery or illness or have Dysautonomia, Myotonia, Multiple Sclerosis, cancer, lung disease, heart failure, Ehlers Danlos Syndrome, Arthritis, Chronic Regional Pain Syndrome, or a host of other disabling conditions. 

But should these people have to explain themselves to the mockers? 

Should they have to lay bare their medical history to receive a basic level of respect?

Should we all wear coloured vests or carry neon signs stating our sick credentials to be treated with dignity?

This and other instances of the same"joke" (here, here), that continues to make the rounds on the Internet, is nothing short of insulting and reflects a basic lack of empathy and character upon those who both continue to share it, and those who laugh or say nothing.

I am tired of having to justify my existence to the wider community. I am tired of friends having to justify the use of mobility aides such as wheelchairs. I am not here to educate every idiot who finds this crap funny. I have enough on my plate to deal with on a day-to-day level. I don't need the added burden of playing the role of teacher every single day, day-after-day, year-after-year, for people who don't bother to think of how their attitudes affect those of us who have been in that man's position, or that man himself. Or who don't realise that they, or someone they love, may one day develop an illness or acquire an injury that will put them in such a position.

This is not about a lack of sense of humour, as is often the accusation made when people like myself question such jokes. Many of us in the chronic illness and disability community have well developed senses of humour. It is what helps make our lives bearable. We find the funny in the most unfunny of experiences. But we are using our own experiences, we mock ourselves not other people. We tread the hard path, the pain, the fear, the tears and the doubt, and we have the right to use our experiences. Others do not.

It is me who cannot stand, who collapses on the floor, who vomits up food on a regular basis, who cannot always hold a glass, and who cries into my pillow from the often unrelenting pain in my body. It is me who is often unable to walk from my bed to my bathroom and has undergone numerous painful and scary medical tests. And it is me who needs to use a wheelchair to access the world and doesn't meet the simplistic perceptions of others. 

I have paid my dues and can laugh at my experiences. But when able-bodied people post articles like this one, when they mock, or make derisive comments, they are misappropriating and minimising my experience and the experience of many others, for a cheap laugh.

It is nothing short of insulting and offensive.

Just as we shouldn't put up with sexist, racist, or homophobic memes, we shouldn't put up with this ableist crap either.

I am tired of having to explain myself. But I am more tired of simply sitting back and putting up with discrimination sugar-coated as humour.

If you post, share, or laugh at memes such as this, you are an arsehole. If you see it and say nothing, you are giving your tacit approval to that attitude. And I for one am going to call you on it.


Also check out more on this from:
The #AusOpen Miracle, and
A man stood out of his wheelchair after a Roger Federer Miracle Shot.



Update: Buzzfeed have decided to try and save the piece by adding five tweets from disability advocates. A piss poor attempt to placate the disability community and completely missing the point yet again. This doesn't alter the fact that they saw fit to post the piece in the first place and continue to see it as an appropriate piece. They even add a note at the bottom to say: 

UPDATE

This story has been updated to include comment from disability advocates and to reflect BuzzFeed’s editorial standards for reporting on disability. Jan. 30, 2016, at 8:25 a.m.

If this meets their editorial standards for reporting on disability I am truly disgusted. The piece needs to be removed, a no excuse apology offered, and consultation with the disability community undertaken immediately. This is more than simply an error of judgement. The piece was written, editor approved, and following justifiable outrage from the disability community, this is the response they chose.

Oh and it's not that we're "Not Happy" as the new improved title suggests. We're angry that a major media outlet would think that this shit is in any way appropriate. We're angry that they fail to see that this is the kind of bullshit that perpetuates stereotypes and cause harm. And if they'd bothered to read even one of the many blog posts or comments by disabled people they'd actually understand exactly why we have reacted in the manner that we have and why their non-apology, no effort, response is an infantalising pat on our heads. 

Michelle

High Voltage

There's a park across the road from my house. Straight across. 50 paces at most. I've been there twice since we moved here 18 months ago. I watch the neighbourhood kids ride their bikes and argue over who's turn it is next for the swings. Others walk their dogs every night. The lady with the two golden boxers that prance and bound. The older couple with the tiny white puff balls assured they own the world. That one guy who refuses to leash his dog and starts the raised hackles and lunging.

I envy them. The normalcy of life. The ease with which they walk. It's a chore for some. You can see it on their taut faces and hunched shoulders. Especially on the cold nights. Of which we have many of late. Winter is biting and walking at dusk is not a pleasantry. I don't need to see their faces, hidden beneath scarfs, flipped collars, beanies and tucked chins. Bodies are contorted to their smallest in a hopeless attempt to avoid notice of cutting wind and sharp air. Pace is quickened lured by waiting heaters and warm meals. All of them have one thing in common. They are unaware of the gift that they experience.

Walking isn't something I ever really thought about. I just did. I got up. Moved my legs. And off I went. I walked around shopping centres. With my dog. Though the NGV. Across Vietnam. I thought about it about as much as I thought about my ability to be independent. Which is never. Then I became ill and walking became complex and independence faded.

On a bad day I cannot walk. Mr Grumpy has picked me up off the couch on more than one occasion my legs little more than useless lumps of flesh. Other times they crumple beneath me. I have crawled around my house. From bed to bathroom and couch. I have moved from chair to chair to chair throughout my house. On good days I can walk a little. But my limbs fatigue. As distance and time increase I am reduced to little more than shuffle. I watch my feet as I walk and hear them them scrape slowly across the ground beneath my sensible soles. My knees stop bending and my muscles start to forget how to coordinate. I end up at a snails pace. Exhausted. Trembling. On a good day.

I don't tend to walk anywhere alone. My confidence is shot. In my honest moments I know I'm unsafe. I know that I'm a fall risk. I know. I now know I am a fracture risk should I fall. I know. But I long to walk alone.

I have a wheelchair, Vera, but I can't self propel. I am bound not to the chair, but my weakened limbs. Nearly 8 months later I am bound by an OT referral and review that are yet to eventuate. I am bound by a lack of funds that mean I am unable to upgrade to independence without subsidies and referrals.

Last week I had a Fuck It moment. I went for a walk. I was home by myself. There was no discussion. No one to talk me out of it or suggest they come along. I just did.

Don't think. Do.

I grabbed Francesca, my walking stick. Wrapped a scarf around my neck and stumbled out the door. I steadied myself on the edge of the house and let my body find some sense of equilibrium. Let go and walked.

Down the driveway and on to the road. At the bend in the road ahead sits the blue-grey electricity box. My goal. An unimpressive dusty metal box next to the pathway into the next housing estate. Not the logical choice of inspiration. A utilitarian blight on the landscape. A shining point in the distance. A need and a want. Mindless stubbornness matched perfectly to bland vented mechanics.

(It's up there in the top left corner. A square smudge of blue-grey.)

The local magpie family sit in the road ahead. The same family that take up residence on the fence and taunt Freyja with their warbling chorus and flapping of wings. Just out of reach. Ignoring her barks and excitement. Occasionally they fly up in a burst only to land a mocking one metre further down the fence.

They swoop each other in play. Sing and glide from light post, to fence to tree and road. As a group they rise from the bitumen to land in bushes and bare branches as I approach. Only to land behind me once more as I pass their roost.

Watch the dip. The glide. The bickering. The song.

And then I was stepping up on the rough walkway. Overturned earth and weeds of construction. The pile of car window glass and lolly wrappers. Touching the cold blue-grey metal and the High Voltage sign. Unbending resisting fingers to lay my hand flat against the dusty paint.

Metal against my back I looked back at my house. Ragged breaths waiting to be caught. So close but so far away. And so pleasing. A rest. A stumble and false start. And then back I went.

The same magpie clan warbling on the fence. Singing as I continued my slow and unsteady steps.

A moment of "this was not a good idea, Michelle," as my blood pressure started to dive and my legs tremble. But stubbornness and an overwhelming desire not to faceplant in the middle of the street can work wonders. I have no desire for a moment's independence to be trampled by strangers picking me up off the road.

The wind crisp. The sky grey. Glorious.

Don't think Do. Don't think Do.

I stumbled across the word 'Ukiyo' the other day.  The floating world. "living in the moment." That's where I exist most of the time. Where I exist in walks that thought and planning would otherwise tell me no. Ukiyo. The perfect word. Do and enjoy it. Do free of the bothers of life and broken bodies.

I made it back to the house. Opened the door and slide down to the tiles. I made it. I did it alone. And no one was there to reprimand or fuss. Well except for a Great Dane who thought that I had left for ever and was overjoyed at my return, and concerned that I was lying crumpled on the tiles.

I did it.

It wasn't a chore. It was icy cold but I didn't care. And I was fully aware of the gift.

(Resistant facial muscles make a smile hard, especially on the left side of my face. 

But sometimes the effort and post smile pain is worth it.)

Michelle

You ask me why I like to dance

And you ask me why I like to sing

And you ask me why I like to play

I got to get my kicks some way

(High Voltage, AC/DC, 1976)

Pay it Forward: Dysautonomia style.

One thing I have learnt about the chronic illness community is that it is filled with many wonderful and generous people. The support I have received from complete strangers, both here in Australia and all over the globe, has kept me going through some of the toughest times. For someone to spend their precious energy to send me a funny photo or Dorothy related shot because I'm down or they just wanted to share a laugh, is a beautiful thing. And it is one for which I am very grateful. This is the strength of the community, and the beauty of the Internet. To support, and receive such support, is truly wonderful. 

In light of that I wanted to propose an idea. This idea was born from an event earlier in the year, and my favourite Ghandi quote,

"You must be the change you wish to see in the world."  

Back in May I was lucky enough to be given a free wheelchair, Vera, to tide me over until my reclining chair comes. Vera was an upgrade from my first wheelchair, Bernice, and has a fabulous squishy cushion for my dodgy coccyx. This left Bernice, my first wheelchair, sitting forlornly in my rumpus room going to wrack and ruin. I didn't like seeing her sitting there unused. So I put an advertisement on our local Dysautonomia support group. It ran a little something like this:

"FREE TO GOOD HOME: Bernice has been a trusty companion since I first got her. Despite my initial reluctance she's been increasingly on the scene, going to shopping centres, restaurants, even comedy gigs. As you can see from the photo she's up for a laugh and appreciates sarcasm. She may be a little cheap, but in no way nasty, and is up for bedazzling or a new coat of paint. Don't let her start at the Aldi Home for Wayward Wheelchairs fool you, this lovely lass has gusto and class. I have recently upgraded to Vera and despite my love for Bernice she is looking a little forlorn in the corner of the rumpus room, especially when Vera and I head out on a date.

Such a comely lass as Bernice needs to be out and about, and is the perfect starter chair for someone tossing up if they need/want a chair. So I'm offering her up free to a good home to anyone in the Melbourne area who can come and pick her up. She may even be the perfect starter chair for many and travel all over Melbourne as part of a pay it forward campaign.

So if anyone has a forever or at least a, for a while, home where they can give Bernice the love she deserves, she's yours. First in best dressed, Melbournians."

Bernice was snapped up quickly, and now lives with Caroline a few hours away. Here she is in the doorway of her new home poised for an outing.

("The beloved Bernice. My freedom wheels." - Caroline.)

I was lucky to have Bernice and I wanted someone else to have the freedom she gave me. And I'll have to admit the first time I saw a photo of Bernice and Caroline out and about, I was filled with joy and a wee bit teary.

(Vera will also go to a new home when my tilting chair comes.)

There are many people in our community who are either unsure they want a particular aid and don't want, or have, the funds to try them out. Alternately, many simply don't have the money to purchase aides they desperately need. When you think that even one pair of medical grade compression stockings can set you back $100+ you begin to realise that being ill is an expensive business. And for many it comes down to a case of prioritising a litre of milk and some bread for their family, over a much needed chair or cane. 

So I want to propose a medical/Dysautonomia style, Pay it Forward movement.

How many of us have equipment, be it canes, wheelchairs, shower chairs, compression stockings we brought, we wore once, and didn't like, or they didn't fit? How many have gym equipment, a mini cycle, therabands etc that are just lying around thanks to a change in our health, or an upgrade?

If you've improved you may have devices you no longer need. If you have been lucky enough to get upgraded equipment you may have your old equipment just sitting around gathering dust. Why not give it to someone who needs, and can use it?

It's easy to participate:

• Decide if you have equipment you no longer want or need.
• Make sure it is in working order and mank free.
• Hop onto your local support group site.
• Or, alternatively a forum or general support group.
• Write up a short “Free to Good Home” speal.
• Organise a pick up or drop off, whatever you are comfortable with.
• Know that you have made a difference in someone else's life.

Remember this about gifting the piece FREE. 

It's about paying it forward to those who may not be able to afford that chair, cane, pair of compression stockings, etc.

That piece of extra equipment you have languishing unloved in your cupboard or back room may change someone else's world.

So what are you waiting for?

Cheers

Michelle :)

I would love to hear how people have Paid it Forward. Drop me a line here on the blog, via email or over on Facebook or Twitter.

Giving in or taking control?: Mobility aides.

(I've loved this chair since I first saw it a year or two ago.
It belongs to Italian art director Fabrizio Sclavi. Full photos can be found here.)

I've seen a number of posts lately where fellow patients have been chastised by their doctors for using mobility aids. There is a perception amongst some, that to do so equates to patients "giving in" or "becoming" their illness. Whilst there will always be a small subset of patients who do indeed embrace their illness, these patients constitute a distinct outlier and are not reflective of the wider patient population. Instead, choosing to use a mobility aid for most, is an exercise in taking control of their situation and accessing the world. It can also require a large emotional leap, letting go of our stubbornness, and a swallowing of our pride.

On one hand I can understand the doctors' concern. Embracing the sick role is not helpful. It impedes recovery or management and increases what is known as, excess disability. But a large part of me wants to yell at the computer "are you serious!" Very few are the patients who truly revel in being ill. Most rally against illness, are desperate for a cure, and are driven to do anything to return to their old lives. Patient's who do otherwise are the exception, not the rule.

For the majority of patients, be they from the Dysautonomia or other chronic illness communities, to use a mobility aid, particularly in public, takes an enormous emotional wrench that is hard to articulate. Even when these devices are clearly required, taking that first step or roll can require a huge change in thinking. Acceptance is a hard road. Especially when you still cling to the hope that you'll suddenly get better and therefore not require that particular aid. Those early days can be fraught with much stress.

I've documented my own struggles coming to terms with buying and using a walking stick, and wheelchair, and finally doing the paperwork for a Disabled Parking Permit. In each case it had been a case of others forcing my hand. I went through months of increasing unsteadiness, until my children looked at me one day precariously balancing/hand walking around the car to make it from the drivers seat to the passenger seat and they simply said "you need a cane, Mum." I was walking like a drunk on a daily basis, but without their strong prompting I would never have purchased one. Same for my wheelchair. And if not for my firm but gentle OT, I would still be without my parking permit.

The use of a mobility aid when you are in your teens or 20s or 30's or really any time, is confronting. Such products are not directed at the young. My first wheelchair, Bernice, was found in the local Aldi brochure under Aged Care Products (as was my shower chair). There is an inherent belief that such products are the province of the elderly, when in fact that traverse all age groups. In the wider community looks and questioning quickly inform the user that their situation is abnormal. I still recall the look on one check out server's face when she asked how I'd injured my leg. Was it a sports injury? Had I been hiking? She looked confused and then aghast when I mentioned a neurological disorder. This is not the norm for a then 30-something woman. Whilst even now at 40 I frequently recoil from the looks, for a teenager, at a time when self-image and self-worth are being defined it can be incredibly difficult, no matter how helpful such a device may be.

For many their use signals that you are in fact sick. I know for myself having my GP fill in the paperwork entitled "Confirmation of Disability" was confronting. Not because I didn't realise that I could barely walk from my car to the house some days. Not because I didn't know that my health had deteriorated significantly. But getting that piece of paper signed made it real. I could no longer live in denial. And frankly, I was quite comfortable and happy in my denial.

For many we keep pushing on. Collapsing when out. Or simply, not even venturing out of our homes. We fight through for as long as possible, often to the point where it becomes harmful. We convince ourselves that we aren't that sick, or not sick enough, so we don't need help with mobilising. We are stubborn and often need to be coerced to accept that a wheelchair or cane may indeed be helpful. Even long after accepting that a wheelchair is needed to venture out of the home, especially if any distance is likely to be involved, I still resent having to use one. Logical me knows it helps. Emotional me wants to run it over with a tank. Repeatedly. Luckily, logical me combined with persistent family members who give me the "you're being a dumbarse," look win out more often than not.

For many we have other competing medical issues, for example pain, which we don't mention to anyone but the doctor dealing with that particular issue. As a result one doctor may be completely unaware that walking more than 50m leaves a person in bed for days thanks to residual pain, dislocations or post-exertional malaise. For many these competing issues creep up on us bit by bit over time. For example, you can normalise the subtle increases in pain until suddenly it begins to impact on functioning, and that next small increase is the proverbial straw that broke the camels back. It is often only when all these competing disorders reach that magical combination that we start to look at mobility aides. And what can seem like a sudden and un-needed decision, is actually the result of a long process of subtle exacerbations in symptoms from competing and combined disorders.

For many their choice is accept using a mobility aid or never shop, or go to the movies, or a market, or to socialise. If walking 50m equates to passing out or pain, you are unlikely to venture out on a regular basis. If however you have wheelchair you may be able to go to the shops for a few hours or visit a market. You get to be out in the world. The benefit of having the ability to participate in the community or attend family events cannot be underestimated. Chronic illness and isolation frequently go hand in hand. Depression can often follow. That wheelchair that allows a patient to go to a family wedding can be the difference in successfully dealing with or managing disability or, becoming overwhelmed by isolation and hopelessness.

For many mobility aides are used only when out in the world. At home, in small areas, they still manage to walk as much as possible. Or they are used to help with safely navigating the house when their illness is flaring. The stubbornness that stops many from wanting one in the first place frequently means that when they step in the door walking sticks and the like are thrown against the wall and we manage as best we can without. Hardly a case of giving in, or embracing illness.

For many they still attend physiotherapy or exercise at home. Whilst they are working on increasing their fitness and strengthening their endurance, to hopefully be able to walk around aid-free, these devices help us to be mobile. To get to our appointments and to continue with life as much as possible. The idea that their use will set back a patient's improvement, negates the fact that most only use them at select times and are still committed to re-conditioning their body as much as possible. Additionally, a mobility aid may allow for access to the gym that would otherwise be inaccessible. Ie, it would allow someone to conserve their limited energy to exercise once inside.

For many it's a conscious decision of how to best spend their energy. For example, if you want to go to your child's sporting event, standing or walking a long distance may become prohibitive and you are forced to stay home. A wheelchair or cane, takes one energy task out of the list. You may be able to sit for an hour or two and watch a game, or walk from the car park the long distance to the field. But often you can't do both. The wheelchair allows us to conserve our energy and participate in our family's lives. That is priceless.

Mobility aides are just that, aides. They help us to get around. They help us to last longer when out. They take away the anxiety of passing out in public, or falling over.

They are a tool in a patients overall treatment arsenal. We use medications to control our blood pressure or pain. We use compression stockings to minimise pooling. We use shower stools to stop falling over in the shower. We use mobility aides to help us interact with the world. To get out of the home and socialise.

For most patients the choice to use a mobility aid is not an easy one. We fight the decision. Often long after their use is required. We hope that one day we can put it aside. But in the meantime, we try to learn to embrace them and celebrate the freedom they give us. To be chastised for using a mobility aid after finally getting to an emotional place where you feel comfortable to use one is a hard pill to swallow.

My message to doctors is:

Support your patient. Have a discussion. Ask why. Don't leap to conclusions. Don't expect the worst. And you may just find that the decision is well thought out, very practical, and yet another important part of their overall therapeutic program.

Cheers
Michelle :)

"Hey teacher. Leave those kids alone".

The Ministry of Silly Walks

Walking shouldn't be hard, should it?  If my eldest could walk at 9mths, surely I should be able to walk with ease at 37.  Mind you, I am walking like he was at 9mths.  Furniture and wall walking my way through the world.  It's a good look.  What is cute and gives rises to "oohs" and "ahhs" and "who's a clever boy" at 9mths, is not met with the same enthusiasm by the general public at age 37.  Instead I am the recipient of 'those' looks.  And little whispered comments, which seem to include the word 'drunk' quite frequently.  If only, judgmental old biddies.  If only.

These past few weeks I have been walking like a drunken sailor, minus the barrel of rum in my belly.  I have found that my gait is getting wider, what in the old work days I would have thought of as a classic alcoholic ataxia.  Only I have had hardly enough alcohol to pickle an olive, let alone my cerebellum.  My muscles have been uncooperative little buggers, and my weakness increasing.  They simply feel 'wrong' when I walk. 

Can't wait to give Uberneuro that descriptor when I see him in June.  A patient's inability to explain their symptoms was always a frustration for both parties, back in my work days.  I would hand them a sheet of descriptors to pick from when they were finding it particularly difficult. Maybe I should see if I can find it again, to use for myself. Damn, that's a depressing thought.

I don't really know why it's come to a head lately.  Maybe it's just the effects of my recent back issues tipping things over the edge.  I'm not really sure.  Given that my pulse pressure (systolic minus diastolic) has also been in the toilet I think Bob is getting a bit frisky in his old age.  When 40 is optimal, 30 is considered okay, 20 is considered shock, and all I can muster is a pissy 9, well it's not a particularly good situation.  It could just be a phase, and I'm truly hoping that's the case.  All jokes aside, the past month or so has really been hard and I've had about enough.

(Was lying down at the time I recorded this)

My neuro symptoms have been getting worse overall.  I tick and shake, and have muscle fasciculations up the wahzoo.  Managed to burn myself on the stove again thanks to the reduced feeling in my hands (good old SNAFU), which is always fun.  I asked my youngest if I had burnt my finger and he rubbed it, taking off a layer of skin.  Apparently what looked like flour was a wee bit of charred skin and we both had a bit of an "oh shit" moment.  

Luckily I finally have my appointment date so fingers crossed Uberneuro will have a clue.  I used to take classes with him back in the day so I am confident he's the go-to-guy when no one else has a clue.  But seeing someone I knew on a more professional basis will be uncomfortable to say the least.  I know his current Neuropsychologist quite well.  I was on our state professional board with her, so I'm really hoping I don't bump into her.   It's moments like those that I feel really self-conscious and it all gets a bit confronting. Ugh. That's all way to serious and depressing.  Will now play my happy song in my head and settle down to a nice bowl of denial.

I have finally taken the plunge this past week, and am now the less-than-proud owner of a walking stick.  I have put it off for a very long time, despite having balance issues on and off for quite a while (okay couple of years).  I knew I needed one, but my mind screamed "NOOOOOOOOO........" every time I saw one.  Now before anyone starts saying, "well you have to be practical Michelle", you should also know I will beat you to a pulp with my stick if you even start to go there.

People need to realise that:

Logic and Chronic Illness are not friends.  

They're not even casual acquaintances.  

In fact, if Chronic Illness was to serve Logic a drink it'd probably spit in the glass and smirk, whilst they watched them drink.

It's a mind space that you are either in, or you're not.  There's not a lot of grey.  Logically I have known that I needed some form of walking aide for well over a year.  But every fibre of my body has rebelled against the idea. 

I had a similar predicament with the shower chair.  I have a shower chair now, and I love it.  It means I can shower without face planting.  It means I can have the water above tepid, and stay in for longer than a nanosecond.  And it sure as hell beats sitting in the bottom of my manky shower.  All good things.  But the lead up to getting a shower chair was not paved with lollipops, kittens and rationality.  

Buying a shower chair represented tangible proof that I was broken.  Ptooey!  I spit on 'broken'.  "That's not me," I shouted whilst raising my fist in the air in defiance.  Not that anyone was listening.  Except my dogs, and they just looked confused.  It certainly didn't help that they were sold in the 'Aged Care' section of the store.  After a long period of denial, ranting, head shaking from a long suffering Mr Grumpy, and traumatising my dogs, I purchased a shower chair.  There may have been some pouting and swearing involved.  I may also have forcefully thrown it at my shower, rather than going for gentle placement. Whatever.

I still remember sitting down for the first time and thinking to myself,

"I'll show them.  It wont make one bit of difference.  I'll be right and they'll be wrong.  And I'll say see, see, SEEEEEEEEEE I was right, losers".   

But damn it.  It was better.  And easier.  And they were right.  And I was wrong.  Bastards.   See the extreme lack of logic involved?  I think I should be studied.  Or at least better medicated.

The reality is that I am now disabled.  And at some level I acknowledge that.  But there is a very large irrational part of me that continues to rally against that label. I spent my professional life, working in neurorehabilitation.  I helped to plan ways to maximise independence, including the use of lifestyle aides like shower chairs.  I know the theory.  I've seen it in practice.  And yet I still rally against it all.  As I said, logic is not my friend.

The acquisition of a walking stick has fallen into the same category of rabid illogical thought processes.  No doubt there will be many other items that will flail beneath the sword of irrationality, before I finally reach the point of acceptance and pull my head out of my own arse and acquiesce.

I am still on the lookout for a groovy walking stick, is that an oxymoron?  I'm not sure.  I really want one of those classy silver handled, black ones that look like they should be in an Agatha Christie movie.  But will have to save up my pennies.  I do feel as though I should be wearing a top hat and a monocle when I walk with my current stick.  And saying things like "tally ho", or "jolly good show old chap".  Or at least break into a song and dance routine complete with jazz hands and spirit fingers.  But baby steps first.  Coordinating, two legs, a stick, a handbag and breathing is still troublesome at present. 

(It's grannified but it works)

I have used my stick as a light sabre, complete with sound effects.  And as an improvised guitar whilst listening to AC/DC.  It has also proven a great tool to poke cheeky children.

I did see a fantastic sword cane (think Crispin Glover's, The Thin Man in Charlies' Angels)  which I want very badly.  That way I can stab people who tell me it's greatI finally purchased a walking stick.  And muggers beware, this disabled, uncoordinated chick would take you out.  It's all very James Bond.  Maybe I can also get one of those bowler that cuts off peoples heads, like Oddjob's in Goldfinger.  Now there's an idea.  I think I'm finally starting to come round to this whole walking stick idea.

Cheers

The dapper Michelle ;)

The Ministry of Silly Walks, Monty Python (1970)