Saturday 18 January 2014

Weather with You

Ah Melbourne, I love you but not your weather this past week. Five consecutive days over 40C (104F), followed by a dramatic barometric change, drop in temperature by about 20C, and increased humidity. What the hell, Melbourne? Heatwave records broken across both here and South Australia.

What does this do to a girl? It aint pretty my friends. It aint pretty.

This is how I started the week.

Ooo look at me with my Hydrolyte icypole. I've got this heat thing sorted.

This is how I it ended it....

 My name is..............?

Weather is a such a huge factor in how I feel. Heat and cold both affect me. And I have even less control on my body temperature than I did even a year or two ago. (For example, Mr Grumpy walked into our 44C bedroom yesterday to find me in my warmest dressing gown sitting on the bed. He took one look at me, I said "sudden temperature drop", and he kept on walking un-phased. I've clearly been weirdly ill for waaaaaay too long.) And humidity is the icing on a really crappy weather cake. 

I hate the drops as much as sudden rises. My body temperature drops at the oddest of times. And when it does I feel like I've been suddenly dipped in an icy river and have weird full body shakes/contortions/myoclonus. Take my temperature and it's dropped to 35.2-35.5C. Sometimes it happens with no discernible trigger. Other times stepping out into the cold will set off uncontrolled shivers and I can't stop my jaw from madly shaking and my teeth from chattering. It tends to leave me exhausted and sore, long after I manage to get my temperature back up.

But the heat. Especially prolonged heat, with little to no relief overnight, takes its toll. I was watching an ambulance paramedic on the news talking about the accumulative effect of day-after-day of extreme heat. And it's true. It adds up. 

There is only so much my body can take. And that tipping point was Wednesday night/Thursday morning. Heat induced vomiting. Cramping. Diarrhoea. Confusion. Feeling completely overwhelmed. Dehydration despite drinking litres of fluids. Tachycardia (well tachycardia for me and my slack heart). Arrhythmia. Oscillating blood pressure. Shakes. Weakness. Facial droop. Dry mouth. Headache. Overheating (38-39C). A complete and utter mess spiralling down. All without a drop of perspiration thanks to anhidrosis.

Even having IV Saline on Thursday (thank goodness that had already been planned) I still had to vomit in the loo at the hospital. I came home only a little less exhausted than I went in, though I was still happy to have that slight reprieve.

Friday a wipe off. 

Saturday a different level of unwell thanks to oppressive humidity. My muscles are uncoordinated and weak. My whole body aches and nausea is peaking. The air pressure leaves me feeling overwhelmed. Headaches that don't respond to meds. Trying to swallow simple food too complex for my exhausted body, and I spend 10 minutes drinking water to try and move the food that seems like it is stuck in my throat forever. Pre-syncope my constant companion. My skin texture changes. My complexion, sallow at best. My facial muscles useless, unresponsive blancmange. This is what unrelenting heat followed by humidity, does to my body

Even with fluids, airconditioning, ice packs or frozen Hydralyte icypoles, there comes a point where the heat simply gets too much to bear. 

Heat intolerance and poor thermoregulatory control are common symptoms of Dysautonomia. And some of the hardest ones to manage. They can be disabling at times and impact on all aspects of life. From my dental visits where I lie in the chair with icepacks and my dentist turns on the airconditioner, even in Winter, to being unable to bear the warmth of even light clothing after a shower, or needing to strip off after eating a hot meal. It impacts upon your ability to leave the house or socialise. It means you leave your house with multiple layers of clothing to try and accommodate whatever temperature your body throws at you. It also means your family are no longer surprised when you are wrapped up in blankets on a hot day or wearing t-shirt and shorts in the middle of Winter. If you're not careful a hot Summer day or a cold Winter days can be the catalyst for a full body melt down.
Weather has such power to influence how my body functions, or doesn't.

That single factor can make or break a day, before I even leave my bed. 

That single factor decides if I can step outside, make my breakfast, remember my meds, or even stand.

Living with Dysautonomia is all about managing symptoms and avoiding or minimising things that aggravate the condition. Sadly the weather is one factor that can have a huge impact on us, and one we can't control.

The week ahead is thankfully cooler. But we haven't yet hit our hottest months. But that's a problem for another day. Today the recovery from last week begins.


Don't forget to check out my Clicking my Heels for Dysautonomia fundraising forThe Greg Page Fund for Orthostatic Intolerance, and the Baker IDI. Nearly at $1,500 already!

Tuesday 14 January 2014

Planning your travel by toilet: The National Public Toilet Map

Next week is our big move. We're moving from the city to the country, a 2 1/2 hour trip. Given that the most I've driven for the past few years is the 45 minutes into town for my specialist appointments, such a long trip is a cause for concern. One of the main reasons for stress is that I need a toilet, frequently.

My body does not like travel. Without fail it wants to expel fluids from one end or the other. I do tend to prepare for my trips by taking both Imodium and Desmopressin, in the hope I can last just a little longer. But frequently even these medications aren't up to the task. Something about the movement of the car sets my bowel and bladder into overdrive.

For a long time I have planned my short trips by toilet. I know where all my local public toilets are located, and which are more likely to be clean. I also have a list of clean toilets I can use on the routes to my specialist appointments in town. Having such a list alleviates some of the anxiety of travelling.

With this big move the worry about toilet availability during the trip has arisen again. Thank goodness for The National Public Toilet Map (NPTM), provided by the government through The National Continence Program.

This program has a listing of over 14,000 public and private toilets across Australia.

The NPTM is easy to use and can even be personalised. For example, you can specify a search for disabled toilets. And specifies open times (information regarding the MLAK program which allows 24hr access to toilet facilities for the disabled, can be found at the bottom of the post), listing of facilities and even if they are accessible directly by road.

You can easily pop in an address to find public toilets in your local area. I thought I knew all my local public toilets, but now have a total of 10 to pick from thanks to the search function.

The trip planning function is particularly handy. I simply typed in my starting suburb and destination and numerous options came up. Phew.

Look at all those lovely, anxiety reducing, markers.

You can go further into the application to see a more thorough listing of each marker. Including location, type of facilities and opening hours.

Clicking onto each entry takes you to a map of the area so you can find your way to the facilities.

And you are sorted.

I can't stress how much this decreases my anxiety about travelling. Whilst it wont alleviate many of my symptoms that arise with travel, plus the stress of moving to a new area, knowing that I can find a toilet if needed, rather than running behind a tree, or having to resign myself to using a bucket if there is naught but open fields on the road side, takes a huge weight off.

The NPTM is available for iPhone. Those of us on Android can bookmark the website on our phones, though hopefully an Android app will be provided.

Master Locksmith Access Key (MLAK)

The Master Locksmith Access Key or MLAK program allows people with a disability to access locked toilets, playgrounds and other facilities with a specific lock. These locks have been fitted to:

  • Elevators at railway stations. 
  • Accessible toilets in Council municipalities 
  • National parks.
  • Adaptive play equipment such as the Liberty Swing.
There is a fee involved (approx. $10) and access restricted to those with a disability, or those who have written confirmation by a doctor, disability organisation, community health centre, or the owner or manager of a site with an accessible toilet on the site. Keys can be accessed by contacting a Master Locksmith.

A listing of MLAK enabled facilities is provided by Spinal Cord Injuries Australia.


The Continence Foundation of Australia also has a list of handy Travel Tips, for travelling with any continence issues.

Personally, I always travel with a kit, part of which is a dedicated Toilet Kit. My Toilet Kit includes:
  • Toilet Paper
  • Sanitising wipes
  • A plastic bag
  • Change of underwear
  • Towel
  • Bucket
  • Imodium
  • Desmopressin
This kit has proved it's worth on many occasions.

Travelling when you have continence or frequency issues, either faecal or urinary, can be very stressful. I hope these tips can help alleviate some of that stress.

Similar toilet maps are available for many countries, and even some cities eg New York.

Michelle :)

Wish me luck on our road trip.

Don't forget to check out my Clicking my Heels for Dysautonomia fundraising for The Greg Page Fund for Orthostatic Intolerance, and the Baker IDI. Nearly at $1,500 already!

Sunday 12 January 2014

It's the lack of a permit NOT that they don't 'appear' disabled.

Some days here on the blog I feel like I am beating my head against a brick wall. I have been writing about invisible illness and the inability to judge either illness or disability by look, for 4 1/2 years now. In that time I have seen little change. And when the headline above came up in my news feed on multiple social media streams I may have had a little FFS moment. Followed by a mixture of frustration and disappointment, and more FFSs.

A famous Australian footballer and his model girlfriend parked in a disabled parking bay whilst he spoke on the phone, and she ran into the 7/11. Yes, we should be angry. Such casual unauthorised use of a disabled parking bay is rife and smacks of as arrogant disregard for both the law and those for whom these spaces were created. But anger should not arise because they don't "appear disabled", instead outrage should be engendered because they didn't have a parking permit that acknowledged that they have a disability that necessitates the use of that parking space. As such they have broken the law and thumbed their nose at the disabled community.

In all likelihood a top athlete and his model girlfriend are unlikely to have a disability that necessitate the use of the parking bay, but I can't tell this by their appearance, and neither can anyone else.

Look, appear, seem.... 

Here we are again with sloppy journalism that is representative of the views of the wider community. Back to the limited idea that all true disabilities are visible. The corollary of such a view is that if you can't see it, it's not a real disability.

There is a pervasive idea in the wider community that:
a) True disability is visible, most commonly involving a wheelchair.
b) That the illegal use of parking permits is rife.
c) That it is easy to obtain a parking permit.

a + b + c = people without a wheelchair, who look well, are frauds and should be called out/ridiculed/abused.

For those of us with a hidden or difficult to see disability, this can frequently lead to abuse. People are feeling forced to explain their disability and justify their permit, when frankly it is no one else's business.

If checks are to be made regarding the use of permits, it is not up to the average person to question whether the user is disabled. It should be happening at the level of the doctor's office. I was unable to receive a permit without my doctor verifying my medical condition, mobility issues and the aides I use to mobilise. She also had to indicate the length of my disability and if this state was to change. I did not simply waltz in, grab a signature, and waltz out. If there are doctors rubber stamping permit applications, that is where the problem needs to be addressed. Not when someone who appears well, emerges from their car. Yes there will be people who swipe a family members permit to use illegally. But you cannot instantly discern from a quick glance if the person emerging from the car is legitimately disabled or a lawbreaker. Equally councils who approve permits, should follow up with recalling permits for citizens who are deceased or no longer have a need for them.

If however, there is NO permit then people have the right to question, photograph, or call the police.

Question the lack of permit, not the lack of visible disability.

Many are the days that I don't look disabled or sick. I may not always require my wheelchair and may rely of my stick to save the hassle of getting my wheelchair out eg to make the short walk to the Post Office. I may, on occasion, have walked/staggered into the post office without my stick (usually because the lack of adequate blood flow to my brain thanks to my medical conditions, means I have a memory like a sieve and have left it at home or in the back of the car).

This doesn't mean I don't need to use a disabled parking space. Indeed I require it because to stand and walk 10 metres changes such a simple chore into a Herculean task. Parking 20 metres from the Post Office can mean that I am unable to make it to the Post Office. Having to step over a curb rather than use the small ramp can leave me teetering and at risk of a fall. Or, if I do make it, I am forced to sit in the gutter (I am well acquainted with my local gutters thanks to stubborn/stupid pride that made me put off applying for a permit until well after it was required) on the way back to the car to avoid passing out, or my legs collapsing. It also means that I am unable to drive home safely after, as all my reserves have been spent on those extra 10 metres, and I am now so highly symptomatic I am unlikely to be able to discern right from left, or even change the radio station from soft rock to alternative.

I shouldn't have to explain all of the above because a person takes it upon themselves to question my use of a Parking Permit. Because thanks to my perfectly coiffed hair, fabulous dress style and stubborn determination you are unable to see that my body is slowly shutting down inside and I have very limited standing, talking, conscious, time left.

Even members of the medical community are unable to spot a disabled person at 100 paces. Hence the frequent "you look too well, young, pretty etc, to be sick" comments heard by patients in many a doctors office. Pain isn't visible. Neither is my rapidly dropping blood pressure. Nor my legs that are about to fail. So why should the wider untrained community or a lazy journalist, be better able to spot disability, be the person a model, a football player, or a woman simply wanting to pick up her medical compression stockings from the mail? The simple answer is that they are not able.

The Telegraph's headline does little for the disability community and simply perpetuates the sadly common misconception, that all true disabilities are visible. And causes harm, and frequently confrontation, for those who don't meet the limited view of what constitutes disability.

Yes, they should not have parked in the disabled parking bay. They should be held to account and should be fined for their flagrant disregard for the law and the disabled community. But not because they didn't APPEAR disabled.

The issue is NO Permit, NO Park

Nothing more and nothing less. 

We can question the morality of their conduct. 
We can examine their sense of entitlement. 
But that has nothing to do with whether or not they appear disabled.

As a society we must move past the limited idea of what constitutes a disability. We are continuing to create harm by such comments, which as the headline above shows, continue to be reinforced by the mass media. It is time for the media to lead the way in their reporting of disability issues and not perpetuate unhelpful and harmful myths.


More information about Disabled Parking Permits and issues such as these, can be found at No Permit, No Park.

Thursday 9 January 2014

Today I went to a cafe.

Today I went to a cafe.

"And.......?" I hear you say.

It may not seem a big deal to most. For many it is a common, or even daily event. But not for me. I can go months without heading to a cafe. Or anywhere really. Well anywhere other than needed medical appointments, which, when you think about it, are hardly a source of excitement.

I have tried many different ideas to help me get out more. Compression stockings. Extra medications. Even a wheelchair, so I at least take the exhaustion and symptom exacerbation that comes with being upright and walking, out of the equation. But my overall level of decreptitude frequently means that heading to a cafe and all the logistical issues that come with that outing (showering, getting dressed, travelling, finding somewhere with air-conditioning, a place I can put my feet up,....) , are just beyond me. I have a finite level of energy reserves, and of late they have been on a steady decline.

"So how did this miraculous outing happen?" I hear you ask.

The answer:

One litre of salty water shoved in my vein. That's it. That's all. No more. No less. No tricks. No secrets. No magical talismans.

I have no idea why this is so effective. There are multiple theories. But in truth I don't care. It works and that's enough for me.

I drink my 2-3litres of fluids each day. I increased my salt intake. I use both Florinef and DDAVP, both medications designed to make my body hold onto fluids rather than peeing them out.

And yet....

I drink. And then I pee. Often more than I originally took in (and yes I have spent a day collecting and measuring my pee, doesn't everyone?).

But with slow IV administration it stays in. I'm not running to the loo every 3 seconds like I am with oral fluids. And because it stays in, it works.

My headache that has been continuous since Christmas day is gone. And whilst I am tired (I arrived at the hospital at 9:30am and didn't leave until 3pm) that general level of malaise that I have every single day is gone or at least greatly decreased. Tired without that ever present level of indefinable unwellness is a whole different ball game. I have colour in my cheeks and feel mentally brighter. I am still tired but feel better, and more importantly more functional, than I have in months.

And when my eldest said, "do you want to go for a coffee, Mum?"

I actually said, "Yes".

I don't care whether IV Saline remains a controversial therapy in some medical circles.

I don't need their approval.

I do know I have a cardiologist, a GP and a local Day Procedure Unit who were willing to give it a go.

And today I sat in a cafe with my son and had a coffee.

And that to me is a successful treatment.

Michelle :)

Don't forget to check out my Clicking my Heels for Dysautonomia fundraising for The Greg Page Fund for Orthostatic Intolerance, and the Baker IDI. Nearly at $1,500 already!

Thursday 2 January 2014

Happy songs for less than happy days.

The last few months have been pretty big on the bleech side of the ledger. I could bore you all stupid (and myself if I'm honest) whilst I list off all my woe-is-mes. But really that wont change the majority of them. My other option is to pick myself up. Dust myself off.  And at least attempt to find my happy place. I've found it in the past and I know I'll find it again. But sometimes you have to do the hard yards before you get there.

As part of that journey I have been using music. Lots of different types of music, for all sorts of genres. But I decided to push a bit more and be a bit more direct for my dull brain and find Happy songs ie Happy or some version of the word in the title. So here's a bit of a list of my latest listenings, plus a few suggestions from my trusty friends on Facebook.

So if you're feeling a little down play a few and sing along. Play them loud, dance away, tap your fingers or your toes. Break out some fabulous spirit fingers or dance in your mind. What ever takes your fancy.

And hopefully they can bring a little joy.

Personally Judy and C2C tend to be my play it loud and sing along songs of choice, but there's a little something for everyone.

1. Pharrell Williams, Happy (2013)

2. Goldfrapp, Happiness (2009)

3. C2C, featuring D. Martin, Happy (2012)

4. Judy Garland, Get Happy (1950)

 5. REM, Shiny Happy People (1991)

6. Boney M., Happy Song (1984)

7. Kermit the Frog, Happy Feet 

8. Bobby Ferrin, Don't Worry Be Happy (1988)

9. Otis Redding,The Happy Song (1968)

Feel free to add any others in the comments.

Michelle :)