Undone

Undone by two mint plants.

Lying in bed today it seems farcical. Farcical and somehow totally appropriate. I looked at them tonight in their shiny metal pot. So unassuming. I ran my hand through the chocolate mint and it's bully boy cousin, the common mint. Inhaling their scent from my fingers. I breathed in deep, sucking in each and every last molecule of scent. They owe me that. Taken down by two herbaceous hit men, that I dared to re-plant. I'd laugh if the consequences hadn't been so unpleasant.

After fighting so hard all weekend it seems so anti-climactic that this was the left hook that lay me on the hallway tiles. I'd fought rounds with pain, with my blood pressure, with my dehydration. Each time the bell would ring I'd get back up on my feet and stagger back to the centre of the ring for my next beating.

I told myself I was winning. I had it in hand. There was a pattern to the punches. I'd fought my opponents before. I knew all their tricks. I saw the dip of the shoulder before the punch, the planting of the feet before the upper cut came my way. I ducked and weaved like the best of them. Float like a butterfly, sting like a bee. I had them on the ropes.

Then I dared to replant two small green plants.

And I didn't even see it coming.

As I slid elegantly down the wall in the hallway and called for help, I knew I'd lost. I felt it in my bones. In my skin and the hair on my head. From my toenails to my eyelashes, the bitter taste of defeat. It sprang from my pours and filled the room. The tears that spring reflexively when you know that you've lost.

Loser. Failure. Loser. Failure. LoSER. FAILURE.

The words get louder with each passing second. I list off my failings one by one. I beat myself up for not being able to manage better. There MUST have been something I could have done. Something which would have won the round. Something I should have known. Something I should have done. Something....

The trip to the ER seems to take forever. Purgatory. I begin to doubt myself. Maybe I don't need to go. Maybe I'm over-reacting. Maybe I just need to lie down for a while. Drink some more water. Take some more pills. Maybe I should say, "Turn around. Lets go home. Only the sick people go to the ER." If only I could form the words. Denial and doubt are belied by my blue lips and slurred words. By my inability to lift my head or walk. But those internal demons, born from a childhood where illness and needing help were a weakness, whisper their vindictive words. They beat me up as badly as my body. Worse. They know the sweet spots, the secret places that hurt the most. Harden up. Hypochondriac. Suck it up. Push through it. You're so weak.

Part of me baulks even as the automatic doors open up at the entrance to the hospital. Part of me expects the triage nurse to tell me to go home. That I am wasting her time. That there are real sick people who need help. But she's kind and concerned. She takes my vitals and listens to my story. She tells me it must be horrible to live like this. That the doctors will sort me out. She gives me the code words that'll break through the barrier that exist between doctor and patient. She tells me not to worry. That it'll be okay.

I sit in the waiting room, floating in and out as I lay my head on my knees. Scraps of conversation. A prisoner, an assault, a guard in for testing. The boy who's stepped on the nail. The boy who keeps kicking the wall as his mother repeatedly asks him to stop. The beep of the door each time it opens. The woman at the desk apologising at the wait. Car crashes, cardiac arrests. Real sickness. Real emergencies. It'll be soon. Maybe we should just go home.

Then the doctor is there and we gain entry to the other side. Faces. Faces filled with pain, uncertainty, confusion. We pass them one after the other. The burly guards standing just inside with the prisoner handcuffed to the bed. The lights so sharp. The stiff white sheets of the bed. Relief as I can finally lie down. Sleep. I just want sleep. I could sleep for an eternity. Questions. What's wrong? What are you concerned about? What have you eaten? The code words fail. My list of medications and diagnoses fail. And the finger sensor beeps again and again as my bloodless fingers fail to register. My blood wont flow for testing. But the questions continue. How do you spend your day? You have what?

A blur of slurred words and half-formed sentences. So hard to think. So hard to concentrate. A hand holding mine. An intake of breath from the hand holder as he tries to explain once more that all I need is fluids. Finally the miracle, a second doctor and an acknowledgement that I know more about my conditions than they do, and the needle is finally inserted. A rebirth after the IV starts to re-inflate my empty veins.

Blue on my lips and blackened eyes remain, but the clarity returns. Snippets of conversation filter through the curtains. The old man and his wife. His third stroke. They know their way around. The woman back from an overseas trip with a weird viral infection. The horrible crashing sounds as the man across from me seizures. Staff running. Codes called.The girl with the broken shoulder, bent over in pain.

Do I belong? The girl who fell down because she potted two plants.

We come to an agreement. I don't need to be admitted. Flooding relief. That there is nothing more that they can do for me. I am released. A buffer in my veins. Extra padding to make it through the next few days where I can practice my left hooks and upper cuts once more.

I roll out past the broken and the scared. Faces peering at me over blankets. I wish I could take them with me. A mass escape from flashing lights and beeping machines. An escape from pain and fear and uncertainty. Relief as the door comes into sight. Freedom.

Rolling through the carpark. It's only inhabitants in the wee hours of the morning. The silence is only broken by the heavy breathing of the weary and the crunch of my wheels on the gravel. I can speak. I can sit up. I am nolonger blue. But I am still broken.

As we drive home I still don't know if I should have gone. Maybe I could have managed at home? Maybe the fluids would have eventually stayed in? Maybe I could have taken an extra pill? Maybe I could have allowed my hand holder to sleep.  Maybe....

This evening I sat out in my backyard and surveyed my small world. Those deceptively dangerous mint plants are thriving. Mocking me with their runners and verdant green foliage. The other pots sit there waiting. Daring me to come on over and plant them.

I have slept the world away today. Waking only to drink and have tablets. Storing up strength. But fresh air is tempting. The sky needs to be seen. The grass needs to be felt.

As I sit in my chair I start to feel dizzy. I look down at my feet and their bright blue, bloodless, toes. I see the blue tinge head up my to my ankles and take a deep breath. If I don't look in the mirror I wont see the blue start around my lips. It's not that bad. If I lie down I'll be fine. I stand slowly and walk cautiously across the lawn. Heading for bed again. I'll win this round.

And this time I wont be undone by a herbaceous heavy-weight champion again.

Michelle

Saturday Night

(A still from Edward Scissorhands* showing Burton’s vision of suburbia, source)

Picture it if you will. A Saturday night in a small town. A nondescript suburban house. Cookie-cutter brick. A collection of impractical right angles. The token attempt to differentiate with the others on the street. A swathe of green lawn. Wind blown plants set out in a rock covered garden bed. Unremarkable to the dozens that surround. Inside. A small beige ensuite. Coffee-coloured tiles. Glass and chrome. A large mirror sits on the wall, reflecting the scene unfolding before it. A couple. The man standing before the woman. He in shorts and t-shirt. She in red dress and grey stockings. Something about his stance suggests a mixture of concern and uncertainty. Something about her stillness jars.

She is sitting, bent in half on the hard toilet lid. Chest pressed to knees. The lights above beat down on the tangle of black hair on the back of her head. Pain-sweat sticks random hairs to the nape of her neck. She catches her breath with each heightened burst of pain. Cold smooth tiles anchor her feet to reality. She holds tightly onto that feeling, focussing on the texture below her heals. Overly controlled breathing, a futile attempt to control the situation. She continues to fight long after the battle is lost. Pain, misery, and lost dignity are thick in the air.

He is murmuring soft words of encouragement and comfort. Concern flickers on his face as his composure slips. Gone as fast as it appeared. Calm replacing worry.

She is unable to unbend, stomach pains increase. Partial paralysis of your digestive system is not what good times are made off.

He gently lifts her weak leg. Holding her trembling foot against his thigh as he slowly unrolls resisting compression stockings down her pasty, wasted legs. First the right, then the left. Her legs dropping to the floor. Each foot making a small smacking sound as they hit the floor.

She hunches over as he helps her take off her dress. A reflexive shudder with each attempt to unbutton and unzip. A gasp of pain. Their uncoordinated, combined efforts, would be funny, except for the ever present pain. A moment of fear intertwined with a wave of relief, as the fabric gets caught and is suddenly released as he gently pulls it over her head.

He places her pajamas, the soft, old, comfortable pair, kept just for days like this, on the marbled bathroom bench. The only height that she can reach from her bent position. He steps aside so she can have a moment of independence to dress herself. But not too far. He stands ready in case she needs help.

She emerges. Clothes rumpled and askew, but all parts covered enough. She stumbles, bent in half to the bed. Curling up in sheets as pale as her flesh. Pain and misery eclipsing the world around her.

He helps her sit up slightly at the edge of the bed. A contorted mess of distressed flesh. A fragile dam of tears.

He gently holds her shoulder so she doesn't tumble from the edge of the bed. Handing her the cocktail of pills one after the other. Waiting patiently for her extended hand to indicate she is ready for the next. Gentle words, encouraging, barely heard, between pain and concentration. But the feeling, the emotion behind the words, soak into her.

Shaking hands bring the glass of water to her mouth. A small moment of panic as a pill starts to stick. A small moment of relief as it manages to go down. A cycle repeated for each. Big, small, pill, capsule, an eclectic mixture of sizes and colours. Trying to swallow, when your limbs and body are at awkward compressed angles is not for the faint of heart.

Him, quite unwavering support. A rock. Her rock. Anchoring her tonight, and all the other nights that have become part of the pattern of their lives.

She retreats, shrinking, back down into the bed. Exhausted. Pain, always pain. Spiking and slowly reducing. But always pain. Tears held back by shear will and the strength that stands next to the bed. The strength who has stood next to this bed more times than they can count. The strength that has stood in waiting rooms, in hospitals, in clinics, room after room after room, each step of the way.

He covers her with the sheets. Gentleness out of keeping with what others see, but so familiar to her. He moves quietly out of the room. Turning off the light. Closing the door softly. A quick parting word to let her know he is close by if she should need anything.

She radiates unspoken gratitude for the presence beyond the door. She knows she can do it. That it'll be alright. Because of that presence beyond the door. The super power that is love, flows through the door to cradle her weakened flesh. And she can disappear into crumpled sheets and broken sleep as exhaustion finally wins over pain.

Another Saturday night done and dusted. A moment of greatness. In an unremarkable house. On an unremarkable street.

Love isn't grand gestures. It's not choreographed flash mobs. Diamonds, or dozens of roses.

It's quiet moments on Saturday nights in the tiny coffee-coloured ensuites, of everyday brick houses. It's a steady, gentle presence in the midst of pain and illness. It's the hand that holds another's when they sleep. Transferring strength and comfort in equal measures.

It doesn't shout. But is more powerful for the whisper.

Michelle

*Mr Grumpy took me to see Edward Scissorhands for our first date way back in 1991. I knew he was keeper right away.

Just to Clarify

I can laugh and smile and have fun AND still be ill. 

When you live with chronic illness you don't get to wait until you feel better to enjoy life. If you wait for that day it may never come. 

So we learn to make the most of our lives.

We choose to live.

We continue to live with illness, with pain, with fatigue, with weakness, with nausea, with all the things our bodies throw our way.

We could choose to sit and be miserable every day, wallowing in the bodies chance has given us.

But we want more from life. 

We see joy where you see nothing. 

We find humour where you see darkness. 

We smile, because our spirits shine. 

Many of us thrive with illness. 

I say with rather than despite, because it is a part of us we can't deny, but it is not all of us. It doesn't define us. And it doesn't deserve the energy required to live despite it's presence. 

I am ill. 

The nature of my disorder is that I will continue to be ill. 

I will also continue to laugh and smile and have fun. 

Because for me it is the only way to live.

Michelle

It's Just a Flesh Wound aka I'm a Dumbarse.

A few years back I wrote a post about the internal dilemma I face each time a health issue crops up. Well dilemma is probably the wrong word. In reality the dilemma is token at best. The outcome is pretty well decided from the first stirrings of “hmmm, well that's not normal.” I think it's more to sooth myself into saying,“Well you weighed that one up well, Michelle. You looked at the data provided, did a review of your medical history and the examined all the pros and cons. Well done. You Rock.” Whereas the reality is far more, “Shit that's not right. Should I go in? Nah. She'll be right. It's just a flesh wound.”

Normal is not a word I completely understand these days. It might as well be written in Sanskrit for all I can decipher. My view of health and what constitutes a worry is seriously skewed.

Recently I was in having my IV Saline and notice a MET poster on the wall of the room.

Three of the criteria. Systolic under 90 and HR under 50 or over 130 made me giggle. Both of these indicators are so common in a world of autonomic dysfunction. Systolic of 90 is a walk in the park. A complete doddle in fact. Pre-pacemaker low 40s or high 30s for a hr were a daily occurrence. For my POTS friends 130+ occurs on days ending in 'y'. New or unrelenting chest pain again something most with Dysautonomia contend with on a daily basis. We are a walking (okay stumbling, swaying, staggering) MET call.

Normal is relative.

The combination of a skewed normal and a medical system that often treats you like you are lying when your obs don't make sense (I'm looking at you nurse who took my temperature with 3 different types of thermometer before she would believe my reading of 35.2 C.) means I am not a frequenter of the medical system until I am in “dumbarse” territory, as Mr Grumpy would describe it. And even then it's not guaranteed.

Two recent incidents come to mind.

1) We have only recently moved to a new town. About 3am of the first night in the motel I had excruciating kidney pain. Not a first be any means, but still not pleasant. I tossed up that I was taking more desmopressin than usual to cope with the move and our current heatwave, and that my last few kidney tests had come back relatively okay. I knew I was dehydrated, the skin that still stands up on my hands when I pinch it tells me this. But the idea of negotiating a new, country, ER in the middle of the night was just too much to contend with when I was feeling so incredibly unwell (you have to admire the strength of my convoluted reasoning right there). Plus the whole, “I refuse to start the first day in our new town with an ER trip”. That just feels like I'm jinxing myself. So I road it out. When I mentioned it to Mr Grumpy the next day I got the whole “dumbarse” routine. And he's probably right (don't tell him I said that) I should have gone in. I should probably go in now and get fluids, but here I am sitting tapping away on my dying lap top, laying on bed, not going in.

2) Incident 2 is an ongoing one that started the weekend before Christmas. As regular readers will know I received two new diagnoses (Myotonic Muscular Dystrophy and Gastroparesis) and my beloved Great Dane, Thor, passed away all in the fortnight before Christmas. Merry Fricken Christmas, folks! When that weekend I discovered I could nolonger move the toes on my right foot it was a bit of a final straw. I couldn't take one more shitty thing at that point. I had a day of self-pity and sobbing into my pillow. Then I wiped the snot from my face and hit play on the cassette tape known as “Michelle's Hardcore Denial Hits of the Summer.” ER be damned. That's where really sick people go.

I told myself that it'd come back. It was just the lack of blood flow. Or a pinched nerve. You know, the usual suspects. I did the basic stroke routine (perks of having worked in stroke rehab). Then I pretended like it wasn't an issue. By the time two-weeks had passed and I still had no movement I finally thought it was time to see my GP. Needless to say I received another “you're a dumbarse” lecture and she rang my neuro on the spot. Of course their were no emergency appointments, and given the fact I was neither in pain or dying, I decided not to push it and just take the earliest available.

As I lie here today I have minimal movement back. But minimal is some, in my deranged mind. I'm choosing to ignore the accompanying reduced movement in my ankle. What reduced movement? What toes? What ankle? (See, I'm good at this). I have an appointment booked for two weeks to review things. But the idea of having to drive the 2 ½ hrs back to the city so soon after the move is not inviting and I am thinking of cancelling as I have another appointment with her a month later. When I factor in the lack of pain and dying, I can easily reason that it's not that important.

And so I sit here in “dumbarse” territory again.

The place where past negative medical experiences and an impressive ability to normalise the completely abnormal meet.

But you know, it's all okay. It's not like I'm really sick. It's nothing but a flesh wound.

Michelle :)

Update: Since I wrote this post I have had a moment of sanity and have decided to go to my neuro appointment next week. 

Denial is my weapon of choice.

LympheDIVAs Compression Gauntlet Review

Compression garments and Dysautonomia go hand-in-hand. From stockings, to stop the blood pooling in our legs, to stomach binders to try and stop the abdominal pooling that can leave you looking like are about to pop out a baby. Some even resort to a full body g-suit. Your choice of compression garment will depend on where you pool and how bad your pooling has become. But in all cases it's about minimising the symptoms that result from pooling and being able to stay upright for longer.

My legs have always been the biggest source of pooling hence my focus has been primarily on stockings (for a list on my tips for buying compression stockings, including a couple of the main distributors/brands see here). However, the last year or so I have been having more pooling in my hands. My right hand in particular. And it has been painful. I do my hand exercises, I massage the worst spots but overall it is getting worse.

All of this led me to consider the purchase of a compression gauntlet. After much indecision I decided to purchase a gauntlet from LympheDIVAs, who have an amazing selection of colours and patterns available. I have been impressed with their fashionable range for a number of years now, and have often lamented the fact that they do not also make make compression stockings. As such they ticked my two requirements, medical grade compression and, the often elusive, fashion element.

Like all compression wear these are not cheap. I managed to find a gauntlet in the style I wanted as an end of line/no return product on compressionstockings.com but even then it was still $62 AUD. Not a small investment.

I decided on a LympheDIVAs, Small, Right-handed, 20-30mmHg (Class I) gauntlet, in Deco.

The verdict:

I so wanted to say I loved this product, but, I'll have to say I was underwhelmed by both quality and fit. And somewhat disappointed, as I had been excitedly awaiting it's arrival. (Yes, new compression wear excites me. I may need to get out more.) I'd been looking forward to trialling it and hoped I could report back that it was well worth the money. But for this sample I'd have to say I wish I'd paid full price so I could return it.

Sizing:

Sizing is so important with compression wear. It can also be problematic if you are not a typical size. Even with regards to compression stockings, issues such as bunching and length are common. Additionally, with wear, compression can loosen, hence manufacturers recommend replacing every 6 months.

I thought myself a savvy buyer of compression wear, but alas I was caught out. I followed the directions on the LympheDIVAs site for measurements. I measured twice myself and then had a family member measure to triple check. My measurements fell in to the Small sizing on all three measurements. But my spindly wrists disagree. Even with a Small sizing the wrist portion of the gauntlet is extremely loose and bunches up. It also feels quite bulky compared to the rest of the material. It is only at about 2 inches below my wrist and well into my palm that I can feel the compression.

Compression elsewhere is comfortably firm. Given I have been wearing 20-30mmHg stockings for a number of years now, the pressure on my hand is not worrying. Similar to compression stockings the pressure effect fades after about 30min and I noticed little beyond some restriction of movement. Even after a full days wear it was still comfortable. 

Quality:

The print/colour is patchy. The primary top hand portion is much like the photos on the website, however the underside and thumb portion down to the wrist of the print are not consistent and has visible lines in the colour. The edging above my knuckles and at the wrist are smooth, however the same cannot be said of the thumb portion which was rough and unfinished. Similarly, the seams on the thumb, whilst expected, are very visible, particularly against the darker pattern of the fabric and rough. Given the price of the garment I would expect a higher quality of workmanship. 

I do have problems with seamed compression garments eg I can't wear a lot of the sporting compression brands as the seams leave me sore and bruised, but the seams on the gauntlet have been okay so far. There are brands that are seamless which may be of interest for those with sensitive skin (eg Jobst and Solidea).

(I thought initially that the lines going from thumb to wrist, were from folds but they are printed onto the fabric. With lighter patches in the block colour up in the junction of thumb and forefinger, wear the dye seems not to have taken.)

(Bunching at the wrist can be seen easily in this picture. And the rough thumb seam, especially at the ball of my thumb.)

(The wrist band is very loose and there is essentially no compression or even firmness for this and the bottom part of my palm.)

(The hemming of the thumb portion is quite rough and uneven. It had hard bundles of loose threads which I needed to remove before wear.)

But the big question is “Does it work?”:

The simple answer is, yes. Although it is hard to tell if I am getting the full benefit given the looseness of the lower hand and wrist portion. The painful swelling I have been experiencing, particularly in the top of my hand is lessened considerably. It is important to note that with good fit over my knuckles I had no issues with blood flow to my fingers, ie no swelling or discolouration, even after a full days wear.

I will continue to wear the gauntlet, given I purchased it knowing it was a no return item I need to get my moneys worth. And even a small improvement in the engorgement in my hand, and associated pain, is a good outcome.

I should add the product has wicking technology which draws away perspiration, which may be important for those who have hyperhydrosis. As I have anhidrosis I was unable to test this feature even though we are in the middle of a heatwave here in Australia.

My tips:

If you have the ability go to a store that sells the gauntlets, head in and view them in person. As someone who cannot easily get to the shops I rely on Internet shopping, but given this experience I would try and make my way to a distributor to see the product and try them on. I did attempt what I thought was my due diligence with 3 measurements, and reviewing the products on both the parent site and others, but in this case it was not enough.

If buying online, I would ensure that I could return the product if it didn't meet my expectations or was faulty. (If in Australia: I was also caught out in that the return policy was restricted to "from 30 days of purchase", given I didn't receive my gauntlet until after 30 days, my return policy was already null and void had this been an option). Admittedly, I may have become a little complacent given I have had no problems before, despite years of buying compression wear online.

If you are even slightly outside of normal it may pay to have a custom product created. I have long skinny arms with the wrists of a 10-year-old girl, it would seem this is not the norm, though I would have expected better fit given my measurements were within the Small sizing. If considering an armsleeve or more gauntlets in the future I would head down this route next time. 

*This site has a fantastic round up of tips and information about compression armsleeves and guantlets. Well worth a read before purchasing an upper limb garment.*

Compression wear of any type are an expensive investment. When money is tight, as it is when you are chronically ill, you have to be incredibly judicious in how it is spent. You want the most bang for your very limited buck. Sadly, despite my high hopes, this gauntlet did not match with it's price.

I did note from reading on the LympheDIVAs website that they are looking at reviewing sizing and even considering custom compression wear in the future. They also welcome feedback so I have penned an email and sent it off to the company. I am impressed that they are looking at introducing custom options, though I do wonder if the additional cost on an already expensive product, will make them prohibitive to many.

I do give LympheDIVAs a huge high five for introducing colour and pattern to the compression market which seems to have an unhealthy obsession with bland. It is the primary feature which drew me to their products initially.

I would be interested to hear from others who have purchased a gauntlet from LympheDIVAs or other brands. Did you encounter similar issues? Did you go down the customised route or buy mass produced? How many have moved onto upper limb compression?

Michelle :) 

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.

Cheers
Michelle

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!

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.

Tips

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.

Cheers
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!

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.

Michelle

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

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.

Cheers
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!

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.

Cheers
Michelle :)