Wegohealth Health Activist Awards 2012 Best in Show: Blog Finalist!

Next week, the 28th of March (7am of the 29th here in OZ, Argh!), is the awards ceremony for the Wegohealth Health Activist Awards 2012. Amazingly, I am one of the finalists for the Best in Show Blog award. The lovely folk at Wegohealth sent out a pack of goodies to all the finalists and thanks to the lovely Susan, mine made it all the way Down Under in plenty of time. 

Of course I tried to take photos of my goodies and had some help.

Ooooo Presents!!!!

 Putting my foot down and telling Thor and Freyja to sit. 

 Crotch sniff from Thor, removes last vestiges of dignity.

 Token upside down Down Under shot.

 Dog butt shot.

 More dog butt and vane attempts to keep goodies out of his reach.

 Just too exciting.

 No hope of a dog free photo.

 Photo bombing (sigh).

 Excited ghost Freyja is so excited for me that she can't stand still long enough for a decent photo.

I give up. At least I tried.

Don't forget to check out all the fabulous finalists on the list in both the Blog category and all the other categories. Good luck to all my fellow finalists!

UPDATE: Okay I didn't win but that's okay. Huge congratulations to the lovely PCOS Diva who won the Best in Show: Blog award. You can find her here and here. 

Thanks you everyone for all the support and encouragement. This blog wouldn't be the same without the community that has sprung up around it, and for that I say, "Thank You". xx

Cheers
Michelle :)

I know, 3 posts in one week, I've clearly lost my mind. Less dogs and more words can be found in Tabula Rasa and Only as much as I dream can I be.

And because you can't go past a show tune to be happy I give you Judy Garland.

Tabula Rasa

(source)

I am always amazed by is how a single negative comment can outweigh a dozen positive. Doesn't matter if it's about me personally, the blog, my shoes, how I do my hair, cook a a meal or even my taste in TV shows. If I'm not careful, every single good comment can be swept away with one little ,"you suck". Doesn't even matter who it comes from. Stranger, friend, family, that negative is like a tsunami sweeping away all before it. For some inexplicable reason many of us tend to hold onto those negatives. We imbue them with a power that is hard to dislodge. And ruminate upon them until we adopt them as our own. Self-flagellation at it's finest. All because that one comment tapped into an emotional raw spot in our psyche. 

I still recall every nasty nickname or put down, from primary and high school. I remember every time I was told I was not good enough. Not pretty enough. Not smart enough. Not something enough. Most of the time I can put it in it's place, but every now and then a crack opens up in my defences and someone will make a comment and all those old feelings will flare up as raw as they were back the day when they were first laid into my being. 

Being chronically ill my emotional resources are often stretched and on the days when I am really tired and really unwell those negative comments can end up gaining an importance they simply don't deserve. And being chronically ill you will be told all the ways you are doing it wrong, or how your response, or even you, are essentially a failure.

It's bad enough at a personal level, but for me one of the most heartbreaking aspects of living with a chronic illness is hearing how poorly others in the same position, are treated by those in their life. It's one of those times where I wish others didn't "get it". Where you would expect compassion there is, for many, naught but derision and criticism. Somehow our society has moved to a place where people are blamed for illness. Not just strangers, but family members and so-called friends. All competing to tell us how we are doing things wrong. As if illness, or an inability to recover, is somehow a personal failing.

So often I hear tales from fellow patients where they are told that the way they live their lives, deal with their illness, generally choose to live, are wrong. 

They are too engrossed in their illness. 

They are not trying hard enough. 

They want to be ill. 

Or the old chestnut, "it's all in your head".  

Despite logically knowing that we are doing our best under extremely challenging and often painful circumstances, we are often left feeling guilty or bereft because that little voice in the back of our minds, whispers "maybe they are right?" Somehow we give a monumental amount of importance to the perceptions of others. Others who are not living our lives and have only the briefest and most superficial glimpse of our day-to-day existence. We imbue others with an expert status on a topic they really know nothing about.

A long time ago, I realised that the question I needed to ask myself is, "how do the perceptions of others add to my life?" Do they bring positivity and joy, or do they make me feel worse? And if their ledger came up in the negative I put up boundaries or in some cases, cut people out of my life altogether. 

I cannot prevent others from being critical and negative about me and the way I choose to live my life or deal with my illness. But I can choose the importance I place upon their opinions. 

I can choose me. 

And I am worth it.

I choose to surround myself with those who bring me happiness and joy and who help me see that it's okay to simply be me, warts and all. Those who add to my life, not crush it at every opportunity or when I am most vulnerable. There are some I can't avoid, but I now choose how much weight I give their opinions and put a soul-preserving distance between us. 

None of us can control the actions of others, but we can choose whether we allow them the honour of writing on the slates of our lives. And it is an honour. Our sense of self is precious. Too often we are taught to undervalue ourselves and our needs. We carve the negative in stone, and hold it near and dear. We cherish it and repeat it to ourselves until it is all we can see. And in the end no one is ever satisfied. Not those who criticise. And especially not ourselves. 

In life we have choices, and one is to decide who we allow to define who we are. Have those we allow to direct how we feel about ourselves, really earned that power? Do they add to our lives or do they subtract from that which defines our perceptions of self worth? It's a hard lesson and one that takes work. Sometimes criticism is constructive and sometimes it is not. But by learning to value those who add to our lives and equally put the negative in their place, it can make what is already a difficult time a little easier.

Becoming ill you undertake a crash course in sorting out the wheat from the chaff. You are forced to re-evaluate what helps and what doesn't. You are forced to re-evaluate how you see yourself and how you want to see yourself. There will always be someone who puts you down or tells you that you aren't enough, but those people don't deserve the honour of defining how you see yourself. 

It can be challenging and heartbreaking, but you are worth the effort. Never forget that. 

Cheers
Michelle :) 

*Tabula Rasa (Latin) - Blank slate.

Only as much as I dream can I be.

(source)

Sometimes anxiety gets the better of me. I try and fight it. Sometimes well, and sometimes I'm down for the count in the first round. My personality, which worked well in my career, can trip me up if left unchecked in my life as it is now. You see, I've always been someone who likes to be in control  Even now the sicker I am, often the more stubborn I become, as I deludedly try to assert my dominance on the situation. Which of course always works out so well. And I really don't do well with uncertainty. I have on occasion, even been known to catastrophise things. For example, this was my response to having to leave work thanks to my deteriorating health:

 "The world had ended.  The stars were falling from the sky.  My failure was responsible for the hole in the ozone layer, global warming and Justin Beiber.  Even the demise of the Pollywoffle was directly related to my failure (RIP little marshmallow bar of goodness).  My life was over.  I had failed me.  I had failed Mr Grumpy.  I had failed the rug rats.  I had failed my family.  I had failed my friends.  I had even failed the slightly creepy guy who delivered our junk mail. (And I wonder where my youngest gets his drama queen genes from)." (Zen and the Art of Tupperware) 

I like to think this is just another in a long list of less than helpful skills my Type A personality chose to perfect. Up there with deciding to get one of the crappier versions of a crappy illness. None of this half-arsed business here. My anally retentive tendencies would never allow that. Even if the outcome will be undoubtedly shitty, I'll have the best worst outcome, damn it!

Having an unpredictable disorder has not helped. Feel well one minute, out cold on the floor the next. Some days you get lulled into feeling a little less symptomatic and try to do a little more than usual. Like today, I showered, got dressed AND accessorised which of course left me clutching my chest and seeing spots on the bed. Luckily I didn't get all crazy and try to put on lip gloss or I may have been out for the count. So simple yet so unexpectedly difficult. Events like today tend to make me worry. How can they not? 

Some days I can get away with vacuuming a couple of rooms or pottering in the garden. Those days I felt like I did earlier today. But for some unknown reason apart from feeling the white noise of being generally unwell I was okay. As to why today a wee bit of personal hygiene ended poorly, I have no idea. It's not like I get a heads up or can work out why today was worse than those other days. Some days I can have everything in my favour and still end up bradycardic and vague out on the floor. I can tick every single box on my list to give me the best chance of a good day and two seconds later it all ends in tears.

It's been a hard truth to come to terms with for someone as anal retentive as myself. If I'm honest it's one I'm still working on. My tips so far: swearing, sobbing and pouting whilst not exactly getting at the root of the problem do make you feel better. 

It has meant that heading out of the house does make me anxious. I hate admitting that, but it is the truth. If I am going to have a full-body meltdown I prefer to do that in the privacy of my home. Having it in front of others, particularly strangers, still bothers me, even though logically I know it shouldn't. 

The reality is that something as simple as going to the supermarket is a big deal. Not just the physical side of the things like fatigue and weakness, a blood pressure that can drop with little notice, or the realisation that I'll likely have to use the disgusting public rest rooms, no doubt more than once. But the chance that I will fall, have my legs give out, start slurring, throw up in my cart, not be able to sign for my credit card, end up on a bench sucking down water and salt sachets whilst people walk by staring and muttering about the weird pasty faced woman lying on the bench whilst her "poor kids" stand at the checkout (No, I am not drunk or on drugs, judgemental people. Sheesh). I could go in feeling fine and dandy and 10 minutes in be a sobbing blancmange on the foul floor of the public toilet clutching a puke bag. That can make a gal a little anxious.

It's hard. Taking that first step mentally and physically seems an impossibility some days. But the reality is that I can either become a hermit and half live my life in fear of what may be, or I can say "screw it" take a deep breath and hold on tight to hope. Self-imposed exile from the world was never on my To Do list, yet I can easily see myself slowly sinking into it if I don't take myself in hand and down a big can of Harden up, Princess.

I hate the bad days, days like yesterday where I was stuck non-functioning in bed, or days like today that started a little better and went downhill fast. If I could avoid them I would. But I have to acknowledge that sometimes they are simply unavoidable. I do get through them. Every time. It doesn't feel like it in the moment, but I do. At times it's embarrassing or seriously unpleasant, but I'm still here kicking on seven years down the track. I can chose to limit myself in fear of what my body will serve up for the next day or next hour. Or I can suck up my anxiety and let myself reach, seek, look and dream. 

And who knows. I might go arse-up at the check out, but at least I'll have managed to get out of the house, or have some new pots in my garden to admire from my comfy spot at ground level, or wear some fabulous accessories even whilst I am feeling a little like death warmed up on my couch. 

Who knows, tomorrow I may even risk the lip gloss.

Cheers

Michelle :)

Time to shake the crap out of my head. 

Numero Due.

(This scene from Bridesmaids is not unfamiliar.source)

Once upon a time going to the loo was just another boring part of the day. Like most people I went, did what was necessary, and then headed out to continue my day, with nary a thought for the process. There was even a time long long ago in a galaxy far far away, when I could fart without fear. But not now, not these days. My days of enjoying a nonchalant relationship with my ablutions is long past. Dysautonomia with a side of neuropathy, has turned normally uneventful loo time into a death-defying act.

If you are clueless, be thankful. I am quite jealous of your ignorance in the ways of loo complexity. Long may you live in ignorance of the ways of a busted gastric system and the joys of explaining your poo in detail to every medical professional you meet.

There are two ways to go with this illness: Dysmotility or Gastroparesis where your stomach slows to the point of barely moving and you can end up constipated or even impacted. Or, you can end up like me at the other end of the spectrum. Where your gastric system has seemingly been clubbing and ingesting copious amounts of speed when you weren't looking, and you are blessed with constant diarrhoea and fun things like Dumping Syndrome.

There's also this tricky problem whereby pooing (or even peeing) can trigger your vagus nerve. Or just to mix it up (ie your vagus nerve is a dick), when stimulated, this particular nerve can trigger your need to pee or poo. YAY. Sometimes, I feel oh so lucky. My body was not content with simply having my recalcitrant bowel which has meant that I have lived with the trotts every day for two years. No, that was not enough. To up the ante it decided that every time I need to poo, my vagus nerve must be triggered. This has meant that I have nearly passed out on the loo more times than I can count. This of course brings a whole new level of worry to my life. Lets face it the last thing you want is to wake up on the floor of your bathroom only to find yourself decorated in your body's foul offerings. Or, God forbid, on someone else's tiles, or worse, manky public tiles.

You see, at this point, I pretty much need Bear Grylls to come along and do a Man vs Wild episode in my bathroom. I'm sure he could teach me some handy toileting survival skills, or at least how to start a fire with left over toilet rolls and nail clippings. I draw the line a pee-drinking though, Bear can keep that one all to himself.

It all goes a little like this:

1. Eat or drink, anything.
2. Resign yourself to the fact you'll need to go to the loo within the next half hour (on a good day) or next five minutes (on a bad day).
3. Wait for the first hot flush. Ask surrounding family members if they are hot. Have them look at you with a raised eyebrow. Answer with a short sarcastic, "no" and a clearly implied "Dumbarse!" You'd think I'd have learnt by now. But hey, a girl's gotta live in hope.
4. Feel the first wave of nausea and short stabbing stomach pain.
5. Delude yourself that you can wish away said heat, nausea and pain.
6. Some how forget that each time you try to wait, or will it away, it makes it ten times worse.
7. Start to get greying vision and muffling of sound.
8. Decide this is the perfect time to stumble to loo (rather than two minutes before when you could still coordinate your legs).
9. Lurch to feet, grab at door frames and towel rails in the mad dash to the loo. (Tip for the day: towels move on the towel rack and are not a suitable stability aid and you may end up on your arse or sliding your way to a face plant in the toilet bowel.)
10. Start desperate internal dialogue of "I think I can. I think I can".
11. Get to loo just in time for full pre-syncope, hold onto wall and shower glass, brace, and hope for the best.
12. Invoke names of all know deities, offer up first born son and kidneys, if only they will let you make it through the seemingly never ending hell without passing out/vomiting.
13. Ride the wave of foulness.
14. Suddenly realise it's over and start breathing again.
15. Be left a wrung out, weak mess, slumped on loo, with swollen purple feet thanks to the accompanying sudden surge in pooling.
16. Drag self to bathroom sink. Wash hands. Run cold water over pulse points in wrist and wash face.
17. Celebrate that you made it through once more with dignity mostly intact.
18. Make way slowly out to couch. Suck down some fluids and resume normal functioning/nanna nap.
19. Repeat multiple times throughout day.

This process of course can be complicated by:

A) a particularly unpleasant day where you go through Steps 1 through 18, after which you lie/fall on bathroom tiles/crawl back up onto the loo/grab your puke bag/do your best Mt Vesuvius impersonation both ends/breathe/regain enough presence of mind to fall gracefully back onto tiles/crawl back on loo/....rinse and repeat. This process can go on for hours and may end in multiple bruises, much whimpering, and all round woe-is-me.

B) being out in public. These days I plan my trips by toilet availability, and public toilet cleanliness. For example. I know if I am heading into St Vincent's Hospital, there is a clean pit stop at the 1/2 way point at the Blackburn Nth Maccas (I can also grab a handful of salt sachets on my way out). Or if it's a bad day there are three shopping centres, with okayish/bearable public loos, between home and Blackburn Nth. I also know the independent petrol station near the Chandler Rd turn off is sympathetic to a pasty-faced, slightly incoherent and panicked woman with a cane, and lets them use the staff bathroom no questions asked. I also know the placement of all the public loos at the hospital and where Mr Grumpy can drop me off in a rush. Though I did find out the hard way, and with some pitiful tearing, that the reasonably clean public loos near the florist out the front of the hospital is closed on weekends. I can apply such knowledge to my local cafes, shopping centres and in a pinch sections of road with good tree/bush coverage in case it's a desperate au naturale moment.

It should also be noted that even without food or water this toilet fun time can also be triggered by:

1. Standing.
2. Walking.
3. Sitting in a car.
4. Heat.
5. Lack of water.
6. Exertion.
7. Breathing.
8. Mercury being in retrograde.
9. Spilling some salt, walking under a ladder, kicking a kitten in a former life, or.....
10. .......a day ending in y.

Oh, for those long lost days of toileting freedom. Who knew that something so simple could become so complex or restrictive? Or that I would be buying Imodium in bulk? Or have so many doctors view, explore and probe my nether regions? Or long for solid poo, like others long to win lotto? 'Tis a sexy and dignified life I lead.

But what can you do? As Doris Day would say, "Que Sera Sera".

Michelle :)

Doris Day, Que Sera Sera (1956)

Accessing IV Saline: A lesson in futility.

(IV Tequila is looking good right about now. Source)

Back in January my cardio finally gave the okay for regular IV saline. The idea was that it would give me a burst, and that all going to plan, I would then be able to also start a basic reconditioning program (thanks to my dodgy health and malabsorption issues I have lost a large portion of my muscle mass, I only just scrape into a BMI of 17 these days). It was something of a personal coup. IV saline, although fairly common in the US as an adjunct therapy in various Dysautonomias, is simply not done as a regular treatment here in Australia. Once you reach the fun point of complete bodily meltdown you can generally access it as a treatment in your local Emergency Department (ED). But as a regular preventative treatment, well, it simply rarely happens.

There is a large body of both anecdotal and scientific evidence that it is helpful. Hypovolemia (low blood volume) is extremely common in Dysautonomia, as is chronic dehydration. I currently take medications to both increase my deficient blood volume and stop me peeing out my precious fluids every three seconds. IV saline bypasses the dodgy parts of our bodies that refuse to absorb fluids, to directly access the veins and increase blood volume. For many this means being able to function. It also means being able to exercise and gain back some strength, which in turn helps with blood flow and general health. Bonus.

I am constantly on the threshhold of dehydration. On hot days, of which we have many, no matter how much I drink I remain dehydrated. My body simply refuses to absorb oral fluids and I might as well just pour them straight into the toilet bowl. Case in point: last week on yet another stifling day I drank nearly 5litres of fluids and still my lips peeled and my skin was lax and I could pinch the skin on my hands and it would simply stay up in that position till I rubbed it down. I felt like death. Simply put I was ridiculously dehydrated.

Whilst, the idea of being stuck with a needle on a weekly basis is not high on my list of fun things to do (a port is out due to my high infection risk) I am happy to do it as a trial for 2-3 moths over the worst of Summer. 

The risks of IV saline are minimal. Especially when compared to many of the drugs I have tried over the years whose potential side-effects include fun things such as stroke or hypokalemia (low potassium which can in turn lead to a heart attack). 

All in all it sounds like a good option. I also have the support of both my cardio (who is my primary coordinating specialist) and my GP.

Yet....

Today is the 5th of march, 2 months later, and I still haven't been able to find a way to access IV saline on a regular basis. 

Yesterday, I went back to my GP to be told yet again that she had not found a way for me to access IV saline. This is not due to any lack of diligence on her behalf. She is very supportive and has gained support from the clinic head to try and find a way for me to access this simple treatment. Only one problem, there is no where in my local area that is currently able to give me a litre of saline once a week (travel is difficult for me now and any beneficial effects of the saline would be negated by the impact of travel on my touchy body). 

My local dialysis/infusion centre is filled to overflowing. Of the local GP clinics that have a nurse on site, none have the room available to let me sit for 2-4 hours of infusion. Hospital in the Home, a program designed to keep people out of hospital, requires an admission under an in-patient hospital clinic to be eligible in the first place. Private nursing to come to my home is not financially viable. Admission to my local Private Hospital ED would cost me almost $300 for one litre of fluids. My local Public Hospital ED is a less than user friendly environment, plus the risk of picking up a bug is high. 

My GP continues to search and I am grateful she is on my side. But the fact that it is looking like I have more chance of winning the next Tattslotto jackpot than accessing IV saline, is starting to grate.

I can access expensive and potentially dangerous prescription medications with the swirl of a pen, yet I cannot get a comparatively safe and inexpensive litre of salty water shoved in my arm. The craziness of such a system is not lost on me.

I do know that the last time I had continuous fluids for 5 days in hospital my bp sat at around 120/70 for 5 days and my hr in the 60's. My GI remarked at the time that IV saline worked better than Florinef, my main medication. That five day period is the only time I have had such readings since I became sick back in 2006. I should add that was at the time my gastric system gave up the ghost and I lost 16kgs in 2wks. Those fluids worked like magic against incredible odds.

Having regular saline infusions will not cure me. It will not make me fully functional. It will not get me back to work. I not asking for a a port as I know my immune-system is toast. I am realistic in what it may or may not provide me. My health picture is complex and multi-dimensional. But IV saline has the potential to remove at least a part of the many obstacles my body faces. And lets face it the removal of any potential excess disability should be seen as a positive. 

It is hoped that the single litre of fluids will give me the boost I need to exercise and gain back some strength. But it's potential goes far beyond that one basic rehabilitative goal. It may also allow me to leave my house by myself. To pick up my son from his bus stop. Or even go to my local supermarket and buy a litre of milk. To the bureaucracy and politics that are currently stopping me from accessing IV saline that may not mean much. But for me and my family it would mean the world.

I do everything my specialists require of me. I take my meds, I follow my diet, I exercise when I can, I use all the aides they suggest, I make sure I get out and potter in my garden, or write my blogs, or cook, or paint. I don't wallow in my illness and am in no way non-compliant. All of this keeps me semi-functional, but I am at a plateau, a plateau that is slowly edging backwards. 

As I sat in my GP's office discussing the issue once more I could feel the tears forming. Not because I am sad or depressed but that I am frustrated to the point of tears. That such a simple and cheap request is being denied by obstacle after obstacle. 

I am told to take control of my health, to be informed and to seek out the care I need. I am lucky that my specialists are supportive and work with me. But their hands are as tied as mine. The insanity that I can buy bags of saline and all associated paraphernalia on ebay is not lost on me. The fact that if I was wealthy I could access this simple option with ease is not lost on me either. I don't know where else to turn, and I am at the point where I must consider that IV saline is simply not a viable option, just like Ocretrotide or IVIG before it.

It is not the physical aspects of my illness that are necessarily the hardest to bare. It is the constant battle to access and naviagte often basic health care. A battle that continually stretches my already over-stretched physical and emotional reserves to breaking point. It's hard to not become cynical and jaded in dealing with a medical system not designed for chronic and complex conditions. Part of me thinks that the system relies on people like myself and others in my position, ending up too tired to keep banging on about pursing such options. Lets face it the medical bureaucracy is a machine that just keeps ticking. It can wait me out. It'll keep on ticking long after I've collapsed from exhaustion and given up the fight. Part of me also knows that there are good doctors and other health professionals who want to help me, but simply can't. I know that must be frustrating for them too. To know there is a care option that may help their patient and yet they simply can't facilitate access to that treatment. And part of me is just completely over playing the roll of Sisyphus pushing my boulder up the bureaucratic mountain. I really don't want to play this poxy game any more.

I wont let this break me. But I may need a few more rolls of duct tape, a hot glue gun and a great deal of MacGyvering to keep holding my dodgy pieces together. 

Michelle

Highway to Hell by AC/DC just seems so appropriate right now. 

The view from my couch: Renewal with a side of hope.

Technically there are less than two days left of Summer here in Oz, but it doesn't feel it. We have gone from scorching temps in the 40+C's to overcast and stormy, leaving an environment part dry and dead and part oppressively humid. Just enough moisture in the air that the carpet of dead foliage in the yard has started to grow a thin layer of mould. To say it's been foul is an understatement. 

Regular readers know that where I live is normally a beautiful temperate rainforest with a bazillion shades of green. But not at the moment. It is brittle and dry. We live with the constant threat of bush fires and the omnipresent sound of fire-spotting helicopters overhead. It's been a long hot Summer for the whole state and country Victoria has born the brunt of bush fires over the past few months. It seems crazy that in the north of the country my in-laws are once again dealing with mammoth floods and storm cells.

There is a famous Australian poem by Dorothea Mackellar, My Country. I remember reciting throughout primary school and still know it by heart. Even after all these years this time of year and this time of weather always brings to mind the lines:

I love a sunburnt country,

A land of sweeping plains,

Of rugged mountain ranges.

Of droughts and flooding rains.

We are a land of extremes but I love it and I love that no matter what, or how bad it gets, there is always a moment where you know the renewal is beginning. When the worst of Summer is over and you get the first hint of life once more. 

Today as I went to make my morning coffee I looked out the window at my brittle yard. It's depressing given that I am so used to the rich green that is normally there. The air is thick and almost unbearably heavy with unresolved storms that I wish would hurry up and break and bring the blessed relief of rain. The weather and my yard are scarily in sync with my mood. 

 My resilient fushias are nothing but sticks and dead leaves.

The tree ferns which surround the house are more a collection of dead fronds, rather than the beautiful rich green fans which sold me on the house. 

Even my usually hardy lavender is struggling. 

And then I looked over at my dead Oyster Plants....

And there was a small moment of life. 

The first of my Naked Ladies have raised their head. 

A single clean green spike with a head of large, pure white lily heads bobbing in the wind.

Just one.

A bright beacon in my otherwise dead and struggling yard.

The first sign that the worst of Summer may be coming to an end. A sign that maybe, just maybe, I could  feel a little better in the near future, as the heat dissipates and morphs into the more temperate climes of Autumn. That maybe just when you think you can bare no more, there is hope, a promise of better days and endless possibilities. 

Michelle :)

I adore Sarah Blasko. If you don't know her she's a fabulous Australian singer and you should most definitely check her out. I love her cover of Maybe This Time from Cabaret, and it seems appropriate today. Still bummed I couldn't see her when she was live at Hamer Hall with Orchestra Victoria last week

Ennui. (Because it's sounds classier than 'Ugh').

(source)

When I was working, I'd watch the old ladies with dementia plucking aimlessly at their blankets with small scowls on their faces. Fragile fingers pulling threads from their blankets and the hems of their sleeves. Pulling on the various items around them, they'd spend their days making small noises of discomfort or discontent. They'd be fractious when I went in to say hello or when the nursing staff would try to check their IVs or take their vitals. By virtue of their advancing dementia they were unable to communicate what was wrong, yet all around them were left in no doubt of their displeasure. The advanced nature of their impairment meant that even should they still be able to vocalise their fractured thoughts, they would still be unable to identify the subject of their agitation beyond a vague feeling of restlessness. As I sit here typing I understand them only too well. Just call me Beryl and pass me a boiled lolly. Because this is me today, in all my discontented glory.

Summer has been exhausting this year. More humidity than usual, combined with day after-day of soul sapping 30+C and a broken AC, does not a Dysautonomia-friendly environment make. My body is beyond exhausted and truth be told, I can't exactly pinpoint what is making me feel so out of sorts at this point.

I know the physiological explanations, the dilating blood vessels, the tendency towards rapid dehydration, the effects of barometric changes. I know about heat intolerance and how my anhidrosis contributes to my inability to cool down. But this general malaise is not clearly explained by the realms of science. My fatigue has fatigue at this point and my ability to deal, is nearly non-existent.

I grew up in an area of country Victoria that had Summer's filled with 40+C days. I lived in the top of Australia, smack bang in the tropics, for 7 years, where humidity was part and parcel of my everyday existence and Winter days a lovely 28C. But now, since Bob came into my life, I simply can't cope with the smallest increase in heat.

It gets to the point where there are so many competing sources of feeling unwell that you can't pick where to start, or what to do. It's like some omnipresent fog of malaise where all the various aspects of illness coalesce into one giant super-storm of feeling foul.

I couldn't tell you what is wrong today with any true clarity. I am at the point where it's a case of do I want to throw up, pass out, fall over, have my head explode to finally relieve the building pressure? Do I go sit on the loo, lie on the tiles, drink yet another litre of water, camp out in the fridge? Is it my building migraine or my low bp which is worse today? Or my bradycardia? Or the pain radiating up my legs? Or maybe it's Jeff, my stenosed jugular, who seems intent on sending excruciating pain up my neck and behind my ear? Or perhaps my lower back which I seem to have tweaked yet again as I tossed and turned in the heat of last night? What to pick and where to start? Some days I wish I could just do a reverse hibernation and sleep through the worst of Summer to awake in the more temperate days of Autumn.

The accompanying overwhelming physical weakness makes me want to pick aimlessly at the cushions of the couch and make incomprehensible mumbles of discontent like my old patients. I could fit right in, right about now. A bag of barley sugars, a crocheted blanket and a tube of Ben-Gay, and I'm there.

I am over Summer. I am over the unrelenting heat. The constant oppressive-pressure of the Summer storms. I have always been an Autumn girl and now I am even more so.

Come on Autumn weather and be-gone foul Summer. I'd really like to feel semi-human again sometime this year.

Cheers
Michelle

I've spoken a lot about Heat Intolerance here on the blog but this probably explains my experience best Hot blooded, plus it has a shout out to 80's rockers Foreigner, who can you go wrong with that?

Time like this, Henri the cat says it all.

I'm a finalist! How'd that happen? WEGOhealth 2012 Health Activist Awards.

Yesterday I woke up to find that I am a finalist in the WEGOhealth 2012 Health Activist Awards, Best in Show: Blog category. I know, I was equally surprised. And delighted. And shocked. And honoured. And slightly confused (well it was pre-coffee and meds, after all). Once it finally set in, there was much squeeing to be had and my eldest found some old and dusty poppers which he promptly let off in my direction (Tip for the day: check coffee mug for streamers post popper popping, the texture and taste are less than pleasant).

Oh and of course celebratory chocolate macrons.

Thank you to everyone who sent lovely messages yesterday and a huge thanks to those who nominated this little obscure blog of mine.

I'm one of those people who rolls their eyes when you hear one of those Hollywood types say "it's an honour just to be nominated", but now I have to unroll my eyeballs and admit it's true. I am honoured that someone somewhere thought my blog was worthy of a nomination. And even more honoured to be a finalist, especially given the calibre of my fellow finalists.

Blogging is a strange pursuit. In reality I am just a pasty, almost-40 woman, sitting around in her pjs tapping away at my keyboard to purge the crazy from this slightly dodgy head of mine. Thanks to my health I've yet to make it to a blog conference and have met few other bloggers in real life. I still have no idea about SEO, or the different types of visitor stats. If I'm honest I keep waiting for the "oops we made a mistake" email. But what blogging does give me, and many other patients, is a voice. Our voice. We don't have to sit around waiting for someone to speak for us. We can share our experiences with an honesty that is often hard to come by. And in that honesty there is connection. And in that connection is relief. There is someone somewhere that knows what I am going through. Someone who can lend their knowledge or their shoulder at need. We can advocate for ourselves or others. We can provide support or raise awareness. We can achieve many things, no matter our level of functioning. Blogging is, in that sense, freedom.

So massive thanks to everyone who has supported me over the last few years. I love the community that has grown around the blog and on the Facebook page. Recently, a reader mentioned that they felt they had finally found their tribe when they found the blog/FB page. That makes me proud in a way I never thought I'd feel. I often don't feel like I fit in the traditional world of health blogging. I am not big of inspiration, I'm frequently inappropriate, over-share, and use the word arse way too often. There's not much in the way of epiphanies and I am more likely to laugh at the obstacles in my life than find mature ways to deal with them. That there are a bunch of other people around the world who approach their illness the same way makes me feel less alone and very happy. That somehow I can provide support and the odd laugh with my words, makes it all worthwhile.

I feel pretty blessed right about now.

Cheers
Michelle :)

NB: One moment you're riding the high of being an awards finalist, the next you are stepping/slipping bare foot in a huge pile of rank Great Dane slobber. Ah Universe, you keep me grounded.

I've put this Florence song up before but it is one of my favourite happy sing it loud songs so it just seems appropriate.

Florence and the Machine "DOG DAYS ARE OVER" Music Video from LEGS MEDIA on Vimeo.

Well at least it's not.....

(Love Liz Lemon, source)

When you are ill, particularly chronically ill, you are inundated with helpful little tidbits from well-meaning family, friends and even, on occasion, complete strangers. I thought I'd dedicate this post to the one that seems to be a favourite of the well-meaning brigade, and one that really ticks me off.

"Well at least it's not [insert disease or life circumstance of choice]." 

I am yet to work out how this is helpful to the person being addressed. In many respects it assumes that the person has lost complete perspective and is simply over-reacting and whiny. Unless your head is so fully up your own arse that you couldn't pry it out with a crow bar, you know that there are worse things in the world.

No one is immune from loss and illness. We all have tragedies in our lives. Unless you live under a rock you know their is suffering around the world in the form of war, violence, famine and natural disasters, every day. On a smaller scale, there is the personal loss of loved ones and unexpected health and life crises. For myself, I've worked in palliative care. I have worked with women who survived the atrocities of the war in The Balkan's, during the 1990's. I have even helped my sister bury her nine-year-old son. Like most people, I'm pretty up there on the understanding that there are people enduring far worse circumstances than my own. You really don't need to remind me.

When you give someone the "at least it's not..." line:

• You are being nothing short of dismissive and trite. 
• You are negating their experience. 
• You are telling them that they have no right to what they are feeling.
• You are telling them they have no right to express that feeling. 
• You are telling them to be silent.
• You are telling them that their distress is unwarranted. 
• You are making them feel guilty.
• You are making them doubt themselves.

Is that really helpful? 

Does it provide any solutions?

Any useful advice?

The simple answer is NO!

Suffering is as individual as those experiencing it. What one person can bear another will find an overwhelming burden. How can you compare such a personal experience? I know that other people are suffering and that for some their suffering is beyond intolerable. That doesn't stop me, or any other person, from feeling overwhelmed, or scared, or sad, or lost, or angry, or any of the other million emotions that arise with chronic illness. It doesn't mean I don't need support. It doesn't change my circumstances. It doesn't make my suffering any less real. And it doesn't mean that I think my suffering is worse than that of another. But, it is mine alone and it's salience can only truly be interpreted by me. Where is that line in the sand that says, yes you finally have suffering worthy of complaint? And who decides what the line is?

The reality is, that whatever anyone's life circumstances, be it illlness, or loss, or...., there will always be someone, somewhere whose experience could be classified as worse.

Negating or silencing someone's experience is not an act of kindness. You do not need to understand someone else's experience to be able to show compassion. To let them speak their truth. To let them release that burden so they can start to pick their feet up once more and take the next step. Compassion costs you nothing but is priceless to those who receive it. 

Chronic illness is a long and often frustrating journey. It has no clear parameters. Some days it is better, some days it is worse. Often you can't predict when either circumstance will occur. We experience loss in different forms, jobs, life roles, financial, social, our sense of self. We experience pain both physical and emotional. We have burdens a plenty to deal with. Why should we also be made to feel that we must justify our right to feel upset or overwhelmed.

I, like most patients, know in many respects I am lucky. I count my blessings each day. But the days it gets too much and I'm barely holding on, a kind word or a listening ear is what is needed, not a patronising reminder to keep silent as others have it worse. 

Think about what you are truly saying when you utter those words. Or you just might find yourself beaten, albeit very slowly, to a bloody pulp by my someone's arms of patheticness.

Cheers

Michelle

If people would think before they speak, the world would be a much better place. Sing it Aretha!

Debbie Downer Post

I don't do many downer posts. Mostly because they annoy me. When I go back and read them weeks later I want to grab myself by the shoulders and yell "Harden up, Princess!" Because at that point I'm over it. Whatever has happened, whatever event has led me to that place, is done and dusted. I have a group of unpublished posts in my draft folder where I have spilled my incoherent emotional baggage. Writing helps me make it through, but only a few make it onto here. And those that do? I often think of them as the blogging version of drunk posting. When my emotions are raw my judgement is a little off. What should probably remain out of the public domain ends up splashed across the screen for all to read. In my more sanguine moments I know that life is hard enough without subjecting anyone else to my moaning and self pity. Will this one make onto the blog or not? I don't know. We'll see. It depends on how much of a "screw it all" mode I am in by the end of my purge.

I am over being sick at the moment. I am tired of the unrelenting nature of chronic illness. I am tired of the fact that at the moment I am not getting a break. I am tired that none of my usual tricks, honed over years of careful trial and error, no longer seem to work. Usually, I have a bad patch, followed by a less bad patch, followed by the inevitable next bad patch, and so on. It's a pattern I've become used to over the past seven years. There is comfort in predictability. Those little lulls make it bearable. They give you breathing space. A time to sit back and collect yourself. To find equilibrium once more, so you can keep on keeping on. But my lull is long overdue and I'm feeling stretched beyond my meagre abilities.

There is only so much you can take before you start to fall apart. Before the cracks start to appear. Before others start to see the cracks, and it gets harder and harder to keep it all together.

I tend to retreat at this point. I move to the periphery of life, only engaging sporadically and superficially. It's a matter of survival. When you're clinging on by your fingernails, the slightest extra bit of stimuli is too much. Silence and alone time are life-sustaining. More than that, they are sanity-sustaining. Kindness or caring from those nearest and dearest is not always a benefit at these times. Part of me wants someone to give me a hug and tell me, "it'll all be alright". The other part of me knows that those words, or worse a comforting touch, will break through the fragile shell of control and result in an unwanted flood of tears and misery. The irrational part of me wants both comfort and to be left alone. The irrational part of me expects my family and friends to intrinsically know this. Despite the fact I can barely understand it myself.

I know I am irritable. Everything and anything sets me off. A little corner of my mind knows I'm over-reacting but that doesn't stop me. Everything sucks. Everything is a personal attack. Every single little disappointment or mishap becomes highly salient. Everything is seen through a negative mindset. Socks not unrolled before they go in the laundry equals a personal attack. The dishwasher not unpacked equals the end of the world. I look at my Facebook newsfeed and hate everyone's perfect lives. I hate that they are travelling, that they are at the park, out to dinner, out to the movies. I hate that their lives seem golden. In my rational moments I'd never think that way. I am happy that my friends and family are enjoying their lives. I would never wish my life on them. And I know no one's life is perfect. That Facebook is a sanitised version of reality. But not in that moment. In that moment every irrational, narky, petty and horrid aspect of my mind comes to the fore, and I hate the world and all who inhabit it. I hate the reminders of a life I no longer have. But I can't stop looking. I can't stop seeing the perfection. I can't stop seeing that the world continues on without me. I can't see the reality because I'm too busy revelling in my misery. I have masochism down to a fine art. And in these moments I embrace it whole-heartedly.

I haven't had a break in weeks. I'm tired. So tired. More tired than I have been in months. My GP tells me I must consider that I've had a jump in progression. Now I can't get that out of the back of my mind. I keep trying to give myself a pep talk. "It's just the Summer heat. I'll be fine when the season changes. I just need to pace myself more. I just..." But in the moment I don't believe myself.

I realised the other day that I have forgotten what it is to be well. I've had health problems ever since I can remember but always there were breaks. Periods of relative good health where I got on with life just like everyone else. But that has now disappeared. I have felt sick and/or been in pain everyday for years now. One of my good days would send most people straight to the doctor or ER. I think that's what others understand least and what frustrates me most. And I realise I don't know how to convey it any more. I have lived so long with illness that I can no longer see it clearly. I play it down, I avoid the doctors with symptoms that would make others panic. I don't talk about it because I feel whingy. So I let things go for longer than I should and don't tell my family about the things that would worry them. I just exist and suck it up and put on my happy face. Not that there's really much choice. But you get weary at times.

I can no longer eat without pain. It doesn't matter if I adhere to my dietary restrictions. It doesn't matter what it is. Even water can trigger the pain now. My weight continues to drop and it is brought up at each appointment, with no solutions to be had. I am back to worrying about passing out each time I go to the loo or shower, although in truth my gastro issues are what worry me most. My general health has deteriorated and weakness increased. I try medication after medication and nothing works. Everything is just hard. And so, like many others, I have learnt to cry into my pillow at night so as not wake anyone, because the pain gets bad and sometimes it's just too much, but I just don't have it in me to talk about it all yet again. It's hard to keep on smiling when you feel dreadful 24/7 and all your emotional reserves run dry.

And I want to just be able to say it all free of judgement (both my own and that of others). Free of platitudes. Free of comparisons. I just want to give it all voice and have someone say, "I get it". No advice. No solutions. No pep talks or sweet words that'll crumble my carefully honed composure. People are uncomfortable with illness. As a society we want to fix others to make ourselves feel better, to avoid feeling awkward or uneasy. We miss the point that sometimes it's okay to just listen and say nothing.

The reality is that whether this is a permanent downturn or just an extended rough patch I will adjust. I always do. You can't live with chronic illness for years and not find a way through these times. It's just the getting there that's the hard part. It's knowing that just like physical health waxes and wanes, so does my emotional reaction to it. I want to be better at dealing with it all, but sometimes it gets the better of me. Sometimes I can't shut out the thoughts and feelings I hate so much. It feels like weakness. Or perhaps more correctly in my mind, failure. I'd never think that of anyone else. But me, that's a different matter in my irrational mind. I am my own worst enemy in that respect. I want to deal better but apparently I'm human, and that sucks.

Michelle

This song Take Me or Leave Me by The Magic Numbers, is always on high rotation in my maudlin play list. Everyone has a maudlin play list, don't they? You know for the sucky days. Now to toss up if I can manage half a glass of wine in the bath. What's it going to do? Make me sick? Bwahahahahaha.....