One of these things is not like the others.

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So 40, hey? Tops right? I'm sure it is. Really I am. My sexual prime is rocking. I feel totally in touch with the womanly wonder that is me. It's epiphanies left right and centre. Glitter is thrown at my feet by kittens riding unicorns, as I stroll with confidence around my lounge room. And choirs of angels are singing about the glory that is my 40-year-old body.

Or.

I could be heading to a diagnostic mammogram tomorrow, because even my boobs are stupidly defunct. Happy 40th, now lets squish your miniature mammaries into pancakes/pikelets/poffertjes.

I actually found the lump before my 40th but just couldn't face another broken body part before I made it out of my 30s. There's a limit to the amount of decrepitude a girl can handle before she clocks over into the big leagues. You see I've been down the lumpy boob route for 10 years now. Had my first biopsy before my 30th birthday and had my first chunk of dodgy boob cut out not long after.

I've even written about my defunct boobage before.

My boob is a garden.
Garden VS Swiss Sheese: Update on "My boob is a garden".

But enough is enough. So I waited until after the big four oh, thinking it'd be nothing yet again. But it's never that simple, is it?

Remember that song from Sesame Street, "one of these things is not like the others"? Story of my life. My boobs, small as they are, may be best described as feeling like a bag of marbles, courtesy of all the cysts and fibroadenomas that rattle around in there. But every now and then, one of those marbles doesn't feel like all the others. This is one of those times.

I swear chronic illness is best defined as being felt up by strangers on a regular basis. This occurred to me Thursday, as I lay topless yet again on the table in the GP clinic. My regular GP was booked out. My back up GP had left the practice unbeknownst to me, which meant I had to risk a new doctor. Normally I'd wait till I could get into my regular GP, but sometimes things crop up and you need to be seen (or in this case before I changed my mind). So once more I found myself agreeing to be groped by another stranger.

I lay down whilst she listed off my collection, "one o'clock right breast", " four and five o'clock", "10 o'clock"..... (Is is wrong that I distract myself be thinking of the Play School Rocket Clock, every time I go through this process?). I sat on the edge of the bed. Arm up. Arm down. Whilst she concentrated on my minuscule mammaries. I sat there like the performing monkey I am. Resigned to that fact that any dignity I had is long since past.

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After much in the way of arm acrobatics and going through my lengthy history, I was told that I need to be scanned.

Normally I just do an ultrasound every 1-2yrs to keep an eye on my collection. The girls are incredibly dense (aka stupid) despite being so tiny, so ultrasound is the way to go. But nope apparently that's not enough this time. Now I have to be squished and have the ultrasound. YAY.

Who even knew there were different types of mammograms? Not me. So we're skipping regular and going for the diagnostic one, because I'm special.

When I rang last week to set up my appointments, it occurred to me that you stand for a mammogram. Which could be kind of problematic given the whole 'standing ends in falling over' issue I have with Dysautonomia. I've had visions of me lying passed out on the floor my aging boobs stretched before me nipples still stuck in the plates of the machine. After pointing my dilemma out to the receptionist they have agreed that I can sit whilst they do the scan or at least in between each one. I am also wondering how they will get my concave breasts onto the plates. Surely they need something to work with?

So tomorrow my best friend is coming with me to my inaugural boob squish. If anyone can make me laugh and take my mind off it all, it's her. She's also not afraid to slap me round and tell me I am over-reacting if the need arises. Because that's what good friends do.

No doubt it'll be nothing and all my worry and stress will be for naught. Which will also shit me as I have little in the way of reserves and my neuroses should be reserved for the stuff that does matter. Wasted energy and wasted grey hairs.

How can something so small be so troublesome?

Michelle

This just seems rather appropriate today.

Bradycardia: When your heart goes, meh.

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Bradycardia is a fancy word for a slow heart rate. Kind of rolls of the tongue, doesn't it. Sounds like a cool novelist name, The Heart of Meh, written by Brad Y. Cardia. Fantasy is my bet. There'd be swords and dragons, the main anti-hero would be kickarse but constantly foiled by her need to lie down every 5 minutes. Kinda hard to fight a dragon when you're comatosed on the ground. Though maybe she'd use it to play possum and come out fighting after the dragon had discounted the threat. Or maybe the novel would be 3 lines long as the hero suddenly keels over and becomes a dragon chew toy. That sounds more realistic. (I may be watching way too much Game of Thrones.)

Bradycardia is generally defined as a heart rate under 60. For me 50s aren't unusual, and I'm not usually all that symptomatic. A bit tired maybe but not worryingly so. But when I hit the 40s things start to become unpleasant. When those 40s persist or hit the 41-42 mark it becomes really unpleasant. Now I know that for some elite athletes 40s may be their natural resting heart rate. But lets face it I'm hardly an elite athlete. I'm pretty sure an elite athlete's eyelashs could beat me up and leave me whimpering on the ground, freely offering them my lunch money. Low 40s are simply not a fun place to be. I'm pretty sure I've hit less than 40 but I have learnt that my bp cuff wont register a heart under 40, which is kind of a bummer. I would like to know just how low it is dropping.

Bradycardia is getting the best of me at the moment. I've had it off and on over the years (my max hr of 88 bpm after 10mins on the reclining bike used to bemuse the staff, it also made exercising hard) but of late it has taken up residence in my chest and seems intent on staying. Even when getting IV fluids the last few weeks I was having drops into the 40's and 50s much to the consternation of the staff. Increased fluids in my veins should technically help my heart rate, but no. It's a fickle little turd that doesn't like to be told what to do and decided that it wouldn't play the game.

Last week those who follow on FB will know bradycardia hit hard. As in, collapse in the kitchen, scare the bejebus out of both me and my son, hard. I have to be honest and say I haven't felt that bad before. I could feel my body shutting down. I was ice cold and starting to feel confused. That is not a nice place to be and one to which I don't ever wish to return. The level of pain in my heart alone, is something I could do without. It's been a long time since my family has been worried about leaving me home alone. And even longer since I've been worried about being left home alone. That I haven't really picked up since that event is clear to everyone, including me, and that alone is a tad concerning.

The only precursor I can identify for last week's hijinx, 20 minutes of low level physio. And when I say low level I mean a couple of toe points and legs lifts. I did my final assessment which pretty much just confirmed my permanent status of completely knackered. But that's it.  But exertion, in any form, seems to be a trigger for my bradycardia. Every time within 30-40 minutes. Garden for 10 mins, bradycardia. Vacuum the house, bradycardia. A couple of pathetic toe points and leg lifts, bradycardia. I'm sure someone told me exercising was supposed to increase your heart rate. Even going out for coffee with Mr Grumpy and walking around for 10 minutes left me with a weak and thready pulse that went blah........blah........blahhhh. Usually it'll pass within an hour or so, but last week it was a few hours. And since then shorter periods, but more frequently. Fun times.

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A quick look at the research and the treatment options for bradycardia are pretty limited. The top three choices are: 1) Treat the underlying cause. Bwahahaha. After years of extensive testing they still can't pinpoint the cause of my symptoms. 2) Stop all medications that can cause bradycardia. Done. No more metoprolol for me. Which of course means rebound migraines and shakes. But still the bradycardia persists. 3) A pacemaker. This option has come up in past discussions with my cardiologist but it is more of a last resort solution as it can't be undone. Do I want to go down that route? I'm still unsure. Although if what happened last week were to happen again I think I would do it. Plus, peace of mind for both me and the family would be good. Yet more fun discussions to have with my cardio.

So on that note and because I am absolutely knackered again.

Cheers
The elite athlete Michelle :)

11 tips for talking to children about your illness.

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To talk to your kids about your illness, or to not talk to your kids about your illness? This is the question that faces every parent living with chronic illness. Do you tell them? If you do, what do you tell them? Is it better to shield them? Is it better to ply them with chocolate and give them a new Xbox game and pretend this question never came up? Or alternately, ply yourself with chocolate and hide in your bedroom watching repeats of The Walking Dead on your laptop, and pretending that the question never came up?

The reality is that for the most part your kids, no matter how old, already know something isn't right. And in all likelihood they will be creating all sorts of scary scenarios in their head. Kids will fill in the blanks if you don't. And often the filler they create is negative. It's one of those times a kids imagination and creativity can be quite unhelpful. Just because you aren't discussing your illness, doesn't mean they aren't still thinking and worrying about what is going on.

My kids were young when I first became ill. My youngest was 8 and my eldest 11. It was a hard and scary time. I had no idea what was wrong initially. Dealing with the stress of the unknown and my own over-active imagination was consuming most of my waking moments. I thought I was doing a good job of protecting them from my worries and my failing health. What I didn't realise is that kids are always watching and are way more in tune to what is happening around them, than we ever give them credit. Saying "mum's just a bit unwell", and generally minimising things, really wasn't working. But in my own distress, I was simply oblivious to that fact.

Problem was, that whilst I was doing this, my kids had convinced themselves I was dying. Worst of all they didn't want to share their fears with me for fear of stressing me out. Instead, they were quietly worrying themselves sick that I would soon be dead.

When they finally told me, it ripped my heart out. Here was I, thinking that I had protected them from what was going on. But instead they had born a huge burden alone for a long time. If I have ever truly felt like the world's worst mum, it was in that instant. From that moment on I decided to talk openly with my kids about my health. Well okay, that moment may have been preceded by much in the way of tears and gut-wrenching guilt, but once that passed I decided that I wouldn't hide things from my kids again.

Now admittedly, there are aspect of this illness that you can't hide. Passing out for example is pretty hard to cover up. But there is a huge difference between your children being witness to the event and actually discussing what happens and why. If not dealt with, the uncertainty and the unknown feed fear. When it comes down to it, it really is true that knowledge is power.

So what are my main tips?

1.  Be prepared: Working out how to explain your illness and what it means, before the discussion occurs will help greatly. For a complex disorder like Dysautonomia it can be hard to explain at the best of times. If stumped, ask fellow patients how they explain their disorder. There is bound to be an explanation you can use for your situation.

2.  Tailor the information to the age and maturity of your child: The information a child needs, and can process, at 8 is very different to 15 (as my youngest is now). But whatever their age, or level of maturity, there are ways to talk to them. Early on we basically told my kids that I had a heart problem, but the doctors were trying to work out how to make me better. Over the years this has evolved as they have matured. Now at 15 and 18, they want more detail. They know about the autonomic system and the problems I face. They know about my meds and the types of doctors I see and why. We are now open about the whole situation. But it is a process. It is easy to discuss these things now as we have been discussing them in some form or another for 7 years. Each conversation building on the previous ones.

3.  Answer the questions they ask: don't overwhelm them with details unless they ask for them. Take it step by step. Some kids only want simple answers. Others are a sucker for detail. You don't need to overwhelm them with bucket loads of technical information, unless they ask. It can be a weird mindset as a parent, but you have to step back and let them lead the conversation.

4.  Be honest: My two asked me to promise to tell them if something serious was happening. My first reaction as a mum was to protect them. But in agreeing, I gave them a sense of reassurance. They no longer had to lay awake at night worrying if I was hiding bad news from them. If we weren't discussing it, it clearly wasn't an issue.

5.  Conversations can happen anywhere: if there are big issues to discuss, a specific family meeting can be great. But I've have found that most conversations begin when you least expect them. Questions are asked whilst you're making tea, whilst driving, at the checkout, waiting for a movie to start, late at night (mine are big on this, and many discussions have happened at 11pm or later). The important thing is to take the opportunity you are given whenever it happens, and go with it. The timing may be weird or inconvenient, but it is the time your child is finally comfortable and ready to discuss difficult issues. You simply have to go with the flow.

6.  Empower them with solutions: teach your kids what to do if something happens eg what to do if you pass out. This can be a scary time, but if kids know what to do it can alleviate much of the stress for them. Teach them them how to dial 000, 911,999 or whatever the emergency number in your country. Give them a contact person they can trust to ring in an emergency or if they are scared. Simply knowing to bring you water, or a salty snack when you are starting to fade gives them a sense of control.

7.  Include them in the process: Sit down and work out a plan with them. Eg if mum is on the floor and she wont wake up ring 000. If mum wakes up, bring her water, salty snacks, a blanket, keep the dogs off her (a necessity in our house).

8.  Empower them with knowledge: When an illness is chronic there are symptoms which are simply part of your day-to-day. My kids are pretty attuned to what is normal for me now. They know the cues for when I need to sit or lie down and it is all handled with minimal fuss. If I'm cooking tea and getting pale or starting to sway, they grab me a chair and a drink straight away. It's normal. It also means that they can detect when something more serious is going on (eg when I collapsed  last week). When every day is punctuated with symptoms that can be scary and confronting (something I really notice when we have visitors who aren't used to my health issues) knowing what is white noise and what is time for action relieves a lot of tension.

9.  Lead by example: learning how to deal with your own stress and choosing how to live your life, part of which is illness, is vital. Kids learn by example, and as parents we are still the main influence on their lives. If we are consumed by illness and not managing our stress they will also be consumed by our illness and stressed. As mother's we are often taught to put ourselves last. But the reality is that in taking care of ourselves, we are in turn taking care of them. If our kids see us managing in healthy ways they will learn these skills simply by being with us.

10.  Utilise support services for kids: If you are worried that your child isn't telling you what they are feeling or you don't feel confident to discuss these issues there are services available. In Australia, Kids Helpline 1800 55 1800, is a fantastic free telephone and web counselling service for children. Similar services exist in most Western countries. You can provide your children with information about these services and let them ring at need. Family counselling can also be valuable if you want some professional direction and support as to how to discuss these issues. Letting your child's school know about the situation can also be useful. For example, they can provide counselling if needed, or simply alert you to changes in your child's behaviour. We met with our children's teachers and let them know what was going on. Whilst no major issues arose, the teachers appreciated being told and it definitely gave me some peace of mind.

11.  Kids are resilient: This is the final, and in many ways, the most important point. We often underestimate how resilient our kids are. But the one thing I have learnt over the last 7 years is that kids can show an incredible amount of strength and empathy. They surprise me everyday. If they feel loved and supported it is possible to make it through. We can't always protect them from the stressors of life, but we can provide them with the tools to manage them as best as possible.

We have had many ups and downs over the last few years. I wont say that at times it hasn't been stressful or tough. They still worry. I still make mistakes. And things go pear-shaped at times. But overall we are maintaining a reasonable balance in difficult circumstances. Being open with our children has been confronting and hard at times. But that's not unlike many of the issues we have to discuss with our kids as parents. But we can do it. And our children will be the better for it.

Cheers

Michelle :)

Okay I couldn't think of a song about talking I liked, but I do like Talking Heads and my kids love this song and it's parody Psycho Chicken.

Fear and loathing in Las Loungeroom.

(Loving my new The Walking Dead mug. Suits my state of mind perfectly.)

I've had a bit on an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it's difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.

I've noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk, it's really rubbed me the wrong way. I've found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.

I'm all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.

I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don't exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong is another level of guilt to bear.

Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big-haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.

Say it's tough and you might as well have said, "on my weekends I enjoy sacrificing small furry kittens to Beelzebub". That is where the problem lies. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it's not okay in the face of the overwhelming positive brigade.

Sometimes what you need is one safe place to say it's not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don't need solutions. We don't need to be told that we should stop being so negative. That we shouldn't share. That we should always try to find the positive. Some days you simply can't, AND THAT'S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same headspace as we are.

In psychology, there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or its lack can make or break a support group.

We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.

Positivity has its place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don't need. We have a range of emotions for a reason and each has their place. We are all in different places in this illness journey and we can't expect that everyone will be as sanguine as we are in a particular moment.

This past week I felt fear. Something I haven't experienced in a long time. My bradycardia was the worst it's been in....well, to be honest, it was probably the worst it has ever been. I experienced all the scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabilised somewhat I realised I was over it. Really over it. I've been sick a long time. I've had enough.

There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn't scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it's place. Today I can laugh and smile again. I made it through. Today's emotion losses much of it's salience if it's not seen alongside the darkness of last week.

Living with illness is a frenetic ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don't exist or minimising another's experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that's one burden we can change.

Michelle

I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.

Love this cover of Tears for Fears, Mad World. Plus it was featured in Donnie Darko one of my all-time favourite movies.

40 is the new whatever.

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Today is the last day of my 30's. Exciting, no? I'm sure I'm excited. Really I am. Well people keep telling me that I should be excited, or depressed, or that today should be seen as a last hurrah. But I seem to have a bad case of the meh.

40 seemed so old when I was a kid. Now it just seems like, well, I'm not sure. It just is. Yet another day on the calendar. Another year done and dusted. I just don't get the hype. I don't feel older. Well my body does, but in my mind I'm still 20, or 12 (fart jokes still crack me up). Apparently, I'm supposed to be hitting my sexual prime. Okay, I can't even type that with a straight face. And if all my years of Oprah viewing taught me anything it was that I am now supposed to have some epiphany and come into my own as a woman. Bwahahahahaha.

Don't get me wrong. I'm not upset or depressed either. And it is better than the alternative. It just doesn't feel like that big a deal in the scheme of things.

The lack of care factor could be partially due to the fact that the last week or so has been more a hello 80 than hello 40 moment.

Last week I was officially confirmed as disabled. Bonus. Yesterday was spent checking out tilting wheelchairs named Karma (obviously I kicked A LOT of kittens in a previous life if that's my karma). YAY. This morning I was mocked by my dosette box and granny compression stockings. And to top it all off I found a new breast lump. Woo Hoo! Celebrate good times. Come On!

Though in truth I've been pretty meh about the whole 40 issue for quite a while. I don't like fuss. I particularly don't like fuss about me. And these days, well fuss is just plain exhausting.

Part of me would like to party like it's 1999. In 1999 I was throwing back rocket fuel shooters in a dodgy karaoke bar in Middle-of-Nowhere, Vietnam. Surrounded by drunk Asian businessmen whilst singing a fabulous, if I do say so myself, version of Fame. Now those were good times.

In reality I'd be happy with a nice meal, chooks and a goat. Yep chooks and a goat. Don't tell me I don't know how to party. Though now we are moving my chook and goat plan has gone on the back burner till we get to the new house at the end of the year.

My 30's have made me re-evaluate what's important. Not out of any deliberate attempt on my behalf to find myself or any other such psycho-babble. But when life hits you upside the head and throws you flailing into the abyss you are forced to really examine all your beliefs and what makes life worthwhile. And frankly arbitrary time measurements and socially expected celebrations aren't up there for me. Good friends, the love of your family and learning that happiness is a gift you can give yourself are where it's at for me.

So goodbye 30, hello 40. Or as it really feels, hello another day of breathing with a potential for macarons.

Cheers
Michelle :)

If you do want to celebrate for me, give out 40 smiles tomorrow. Give them to family, friends or strangers. Or give them to yourself. You just might make someone's day, or even your own. xx

Because I am a child of the 80's and I really can't get excited about tomorrow.

Confirmation of Disability

My fun world of denial hit a snag this week. A big slap-up-side-the-head, marching band, Vegas lights and feather clad showgirls, snag. You see there's this weird little lie I've been telling myself. Although I've been sick for 7 years, although I use shower chairs, a walking stick and on occasion bring out he big guns in the form of Bernice, my wheelchair, and her new, much comfier, replacement Vera to go to a shopping centre or comedy festival, I have somehow managed to overlook the fact that I may be disabled.

You see denial is amazing. It's up there with fingers in my ears, closing my eyes, and saying “I can't hear you. I can't hear you”. Although at some level I knew that I was actually, shall we say, less-functional, than before 2006 and even less functional again in the last year. Despite the fact I have difficulty with my stairs, that I can't stand for long, drop things, walk with either a catch-my-toes shuffle or wide uncoordinated gait that would do a drunken sailor proud (my body likes to mix it up) I have managed to compartmentalise, deny, or at least use a meh attitude to get by.

I have managed to make it this long without the word “disabled” being written in my file. Not that I necessarily have a problem with the word or the concept. It's not that I even object to it being applied to me. Well at least not in my logical, practical moments. But, and because I am a long-term resident of Crazytown, part of me said if it wasn't written in my file, then it wasn't really true. I've said it before and I'll say it again, I should be studied.

As of two days ago it all became fact. Unequivocal, signed off by a doctor, fact. Now if I was a wearer of big girl undies or had eaten a can of Harden up, Princess for breakfast then I would probably be able to just see it as another point in the road that I had to cross. I'd recognise that the piece of paper currently burning a hole in my handbag will allow me access to mobility aides and other help that I would otherwise not be able to afford. I'd be all matter of fact, practical, glass half full, blah, blah, blah. Unfortunately I am not that girl, and am currently in a wee bit of a funk about the whole situation.

Logic is not my friend in this matter although I am sure that at some point that will kick in, but hissy fits, weeping into cornflakes, pouting and the consumption of large amounts of baked goods must occur, before that point is reached.

The OT who I have been seeing has been using gentle encouragement and that “come on now Michelle, time to put those big girl undies on” look to get me to this point. In truth she has gotten me further in the last few weeks than anyone else has in the last 7 years which makes her a bit of a rockstar OT. She has organised my paperwork, had me trying out wheelchairs and basically giving me a reality check, for which I both love and want to stick my tongue out at her. Between her and my physio it has been a hard lesson to digest that I am worse than I had allowed myself to believe. In my mind I was managing pretty well, it was only after assessment that I realised that my idea of managing well, made me the illness equivalent of one of those deluded individuals who firmly believe they are the next American Idol, but are completely unaware that they are tone deaf and have the rhythm of a brick.

So I sat in my GP's office on Monday and handed her the sheets entitled Confirmation of Disability and Disabled Parking Permit and watched her sign away my delusions of still being an able-bodied member of society. Again I was subjected to another example of how clear it is to others, even those who see me sporadically, like my GP.

Now that it's done my family have come out to say “about time, dumbarse”, (okay not everyone one added the “dumbarse” part, but the tone left little doubt that it was implied). It seems I was the only one left who had delusions of my ableness. My ideas that “others need it more”, or “others are worse than me”, was apparently total malarky. It's amazing how completely blind you can be to your own situation. How you can tell yourself lies and believe them completely. How the picture of me I constructed in my head was more fairytale than reality. Denial is a very warm and enticing place. I was quite happy living there.

So I sit here in the hospital sucking down my saline and digesting my new existence. I'm still the exact same person I was Monday morning before the forms were signed. I'm trying to focus on the access it will give me more than the title. As it is I have at least 18mths to adjust to the whole idea before I even have a chance at a newfangled wheelchair. As my OT pointed out (placated me), if I have a miraculous recovery in that time, I can always say no to my new wheels.

It's time to put on my practical hat and be all mature and grown up. But part of me is tempted to just get up quickly and walk at a regular pace from the recliner chair I am sitting in, to the loo round the corner without my cane, just to prove them wrong. Taking a walk on the wild side, baby! It may all end in tears, but damn it would feel good to give it a go.

I'll grow up tomorrow. Promise.

Cheers

Michelle :)

When I grow up – Garbage

Am I sick enough for you?

Today I read another "but you don't look sick" comment, and it really got my goat (fainting goat of course). The comment wasn't directed at me personally. Although I've heard it enough times over the last seven years, that it raised my hackles once more and had me yelling at the computer screen in defence of the person being attacked.

I'm still perplexed as to what sick looks like. Or what the threshold is as to when you're allowed to say you're sick? And who is the final judge? Are Randy, Keith, Nicki and Mariah going to come to my house and judge my performance? Will Nicki give me a bizarre nickname? Will Randy call me "Dawg".

The fact is that not all illnesses are visible. You can't see diabetes or asthma. You can't always see cancer. A person's suffering cannot be judged by appearance or even diagnosis. Each presentation is unique to that person. As is how it impacts on their life. A twitter friend recently mentioned the hierarchy crap that goes on in cancer support groups. What the hell is wrong with these people? Though I strongly suspect that patients who devalue another patient's experience would be arseholes even if they weren't ill. Having seen similar issues in the Dysautonomia and EDS community at times, it is clear that being ill does not inoculate everyone against developing a bad case of, Being a Dick. 

I am told not to dwell on my illness and conversely that I need to educate people so that they may better understand my experience.

I am told to get out more and conversely that if I'm out and about I can't be that bad after all.

I am told to brush my hair and put on some lippy to feel better and conversely told that I don't look sick.

I can't win.

Should I post only sick photos on this blog or Facebook page? I could do that.

 Oooo look I'm in hospital. Unbrushed hair, sexy hospital gown, 

and slightly deranged look. I must be sick.

Would that convince you?

Or maybe a picture in of me in my wheelchair, Bernice.

FUBAR? 

OMG inappropriate sick person, be more dignified and inspirational.

Are you convinced now?

Some days my outside belies the dysfunction that is occurring within.

Ooo look I'm dressed, my hair is brushed and I have put on lippy. I must be fine. 

Should I have to carry a portfolio of sick photos on those good days to convince you?

Should I have a handy list that describes all my symptoms, medications and the way it all impacts on my, and my family's, life. Bullet points so you can assess my worthiness at a quick glance.

The reality is I have disorder that isn't always easy to spot by others.

I'm sorry if that offends your sensibilities.

I'm sorry that for the 10 minutes you spend with me I don't meet your expectations of sick.

Illness is part of my life. A big part. But I don't have to carry a placard to announce it to the world just to appease your limited thinking skills.

Does that clear up the confusion?

Stupid me for not wearing my incapacity on my sleeve.

And then I am hit with an attack from the flank.

Yes I write a blog about my health and the experience of being ill.

Yes I have a Facebook page dedicated to this blog where I can chat with the community that has sprung up and post inane jokes and take the piss about my experiences.

For some that means I concentrate too much on my illness. Again I can't win.

And yet I do have a life outside of illness.

I paint. I cook. I garden. I love scifi. I am addicted to The Walking Dead. I love music. I have a family. I am a sad dog person. I love sarcastic jokes and black humour. I enjoy a good laugh even when it ends with my passing out. I have watched Zombieland so often that I can quote large sections of the movie by heart. I love vintage fashion. I love re-purposing furniture. I am team Dean. I love hanging out with my best friend, singing 80's ballads and solving the world's problems. I love the smell of books, the real deal, none of that Kindle crap. I want a farm and a chook house. I eat brown sugar out of the jar and have been known to pick out and eat all the the white marshmallows in the bag.

One train of thought tells me if I do all that, I can't really be sick.

One train of thought tells me if I don't embrace all that, I am dwelling in my illness.

Damned if you, and damned if you don't.

NEWSFLASH

I don't care if you think I am sick enough.

I don't care if you think I dwell on my illness too much.

You don't know me or my experience.

You have a glimpse into my life nothing more.

There is no face of illness. There is no look you can pick out in a crowd.

The pictures above represent aspects of my illness and life. But are hardly representative of me as a whole.

The underlying disorder is still there, it's just that sometimes the packaging changes.

It's not my fault that you can't understand that.

And it's not my job to educate you.

That you can't understand says more about your lack of imagination than it does my life.

That you need to judge me says far more about your lack of compassion than it does me.

Imagine what you could achieve if you re-directed all that energy into simply being a decent human being? Or perhaps, shockingly, focusing on your own life.

You may not be able to spot my illness, but I can spot your lack of character at 100 paces.

You may not like how I live my life and deal with my illness. But. Well. Frankly, I couldn't care less.

Now excuse me whilst I go and continue living my life.

There are wheelchairs to be bedazzled, and Daryls to be sighed at.

Michelle

IV Saline Update Weeks 4 & 5

My new boyfriend, sorry Mr Grumpy. I love you IV Saline.

Well here I am already at the halfway mark of my two month trial of IV fluids and rehabilitation. How time flies when you're being poked with needles once a week. As my lovely nurse said today I'm looking a little druggie at the moment with my track marks. But so far my veins have been found and fluids have been infused so I can put up with looking like an extra from Trainspotting. It's a small price to pay for feeling semi-human once a week.

Surprisingly my veins are still hanging in there. Last week the one in my left arm was super painful. It felt like the doctor had put the cannula in a nerve rather than in my vein. Couldn't even use my arm whilst it was in and it ached for hours after. That was frustrating. But I sucked it up and just concentrated on the sweet sweet saline fix I was getting. Today my favourite nurse put it straight in, pain free. Love her. Always amazed at how some seem to have a natural talent for putting the cannula in and others do it like they are playing Pin the Tail on the Donkey, complete with blindfold, spinning and after downing a keg.

My blood pressure continues to be more stable whilst I am having the infusion and for about 48 hours after. It's not quite as stable as it was the first time I was infused which is a pity, but I'll take what I can get. And at this point it's still far more stable than what I was used to pre-infusions.

Last week I did have a bad patch of bradycardia during infusion which I hadn't experienced previously. Luckily it was still 40bpm so for me that was fine as it has gone lower and for far longer at times. But it did freak out the nursing staff a bit. It's always strange what you get used to with this disorder. My ANS has been unstable for so long that much of what goes on has become white noise. It's only when others point it out, that you realise it really isn't that normal.

Case in point: today my temperature has been jumping around: 38.2C when I first came in, 35.5C a couple of hours later. Poor new nurse wasn't used to my body so we had to try a few different thermometers to test my temperature. All of which came back in the 35C range. In the end she threw up her hands, agreed it must be right and walked off shaking her head. By the end I was back up to a reasonable 36.6C. Personally, I think that whole homoeostasis thing is over-rated, but my lack of it continues to be confounding to others.

The fact that my heart rate, blood pressure and body temperature are constantly oscillating, whilst annoying and exhausting, seem so normal to me now is probably a problem. I've talked before about losing sight of just how sick weare when you're sick 24/7. It's really only at times like this or when I was assessed by my Occupational Therapist and Physiotherapist that I realise just how much my health has deteriorated. And just how far from normal my body now resides. In one way it's refreshing to see the look of horror on the faces of the medical staff when they realise just what is going on in my body, ("I know it could be worse, but OHMYGOD" was one reaction from today when I went through my story again) especially with so many not understanding or believing over the years. But as much as that understanding is good, still it is very much a case of sucking it up, not dwelling, and getting on with life. As we all know there's not a lot of options out there.

I'm still noticing that for those first few days that I am mentally sharper. Even writing a basic blog post which will normally take me around a day is now a couple of hours and maybe 2-3 drafts, vs 6-10. Whilst I wouldn't say I'm even close to what I was before becoming unwell, I am still far better than the vagueness that I have become so used to over the last seven years.

The only real sticking point for me is the fatigue. My stamina is still poor. If my body or schedule get even slightly out of whack then the fatigue hits like a tonne of bricks. With infusion days requiring an early morning start, which doesn't allow for the meds to kick in, or for me to get my usual morning ritual of communing with my porcelain lover for an hour or two out of the way, the day is already off to a bad start. I've also been finding that simply sitting in the chair for those 4-5 hrs plus a lot of conversation and being poked and prodded is exhausting. The Day Procedure Unit where I have my infusion is quiet and less hectic than other hospitals I've been in, but still I find that all the stimulation is overwhelming and tiring. In a way, the very process involved in accessing IV Saline absorbs some of the benefit. I often wonder if I could do it at home in my quiet house over the evening if I would see more of a benefit. Not that I have that as an option unfortunately, but I do wonder if others who can self-administer at home have noticed the difference.

And I continue to suck down my oral fluids from my smelly hospital jug. 

I still think it looks way too much like a pee bottle.

I did manage to get out of the house for the first time in nearly a year last Thursday after I had the infusion and I know I would have been unable to do that before. A long drive for a late night in the city at the Melbourne International Comedy Festival ticks all the wrong boxes for my body and would generally be something I'd avoid. But I made it through and had fun. I didn't even get home until 11:30pm which is unheard of for me. Full disclosure says I was feeling like death warmed up for the next few days and completely non-functioning, but actually going out has been beyond me for a long time. So high fives to that litre bag of juice.

My physio and OT have been scaled back a little thanks to my protesting body but I am still doing three lots of OT arm exercises and two of physio a day. I think there is a difference but it is hard to tell. Last week I popped my right hip just before the physio came and then had a bad intention tremor for most of the session which put a dampner on things. But I am trying to crawl my way back. I'm determined to do as much as I can but it is a slow process when you are starting from less than zero.

Today as tired as I am, I've had a lovely reading of 112/68 hr 66. It doesn't seem real but there it was on the screen and I saw the nurse write it down on my file, so it has to be real. Amazing what your body can do when it has adequate blood volume. I love you little bag of saline.

Air kisses to the machine that pumps the juice into my veins.

And even bigger air kisses for the magical bag of juice itself.

I should add that my final reading was 95/68 because I'm weird like that. As the perplexed nurse said “but you've just had a litre of fluids it shouldn't drop”. Oh well, if she comes back in 5mins I'm sure it'll be back up. It is actually nice to have the obs to back up what I am saying to them. So often you try to explain what our bodies do and you're told it's not possible or it can't be as bad as you say and for five weeks now they've been able to document every up and down of my wildly swinging ANS. I've answered more questions about Dysautonomia in the last five weeks than I have in the last few years. Actually this whole process has been an education and awareness raising bonanza, from nursing to allied health. And whilst my main focus has been simply getting fluids that has been an added bonus to the whole process.

So as things stand at the end of Week 5, the pros and cons are as follows:

Pros

• Reduced facial paraesthesia.
• Reducing/halting facial droop aka stroke face.
• Colour in my face.
• Blood Pressure more stable for at least 48hrs. Still fluctuates but the range is dramatically reduced.
• I have Pulse Pressure (Systolic minus Diastolic eg a bp of 120/80 has a pulse pressure of 40). No single digit pulse pressures since I started IV Saline.
• Heart Rate more in normal range, far less bradycardia overall, no episodes of tachycardia in 5 weeks.
• Improved mental acuity in the 48hr window.
• General malaise/flu feeling improved for 3-4days.
• Ability to participate in Physio and OT next day.
• Went out at night for the first time in nearly a year.
• Have been able to do a few jobs around the house that I had been putting off due to my health.

Cons

• Logistics of getting to hospital weekly and day long procedure.
• Fatigue from hospital day.
• Did catch a bug from hospital.
• Veins getting weaker from multiple needle sticks.
• Big crash on last few days (not sure if it's worse because I am feeling better and therefore doing more which leads to a bigger crash.)
• Real benefit only for 48hrs

Michelle :)

You are Just the Thing, IV Saline.

Music Therapy

This post is dedicated to my dear friend, Autumn. A  fellow patient and Foo Fighters fan who's doing it tough right now. Send her some love. I hope things pick up for you my friend and you find some relief. xx

(My old battered copy of, One by One. Well used and well loved.)

I've been having another rough patch over the last few days. Just another trough in the usual roller-coaster ride that is Dysautonomia. Fun times. I have been perfecting the art of woe-is-me, hidden under the bed covers. Going for gold, people. None of this half-arsed whinging for me. In between moments of dramatic self-pity and swooning, I have also been playing my 'feel better' playlist on loop. All in the hope it'll pick me up and start me on the road back to normal levels of crap health. It's not the classic 'feel better' list, filled with touchy feely, treacle tunes, that most expect. Whilst I do have a typical emo list that I can sob away to at need (and lets face it ,we all need to do that at times), most of my 'feel better' list is far more rocky.

Music plays a huge part in my life as it does the lives of many. And my musical tastes are eclectic to say the least. I have a variety of playlists and artists that I follow, all of whom fit my differing moods. Some days you need a bit of alternative acoustic or jazz classics and yet other days you need to lose yourself in an 80s power ballad or some kickarse rock tune. In amongst all these tunes I have a small select collection of songs that rise above the others. Songs that have resonated with me from the first time I heard them played. There is something in the lyric, or the rise and fall of the melody, that just connects. I couldn't necessarily tell you why. But that song was there at just the right time. That magical moment when mood, need and music collide.

I often wonder if artists truly realise the impact their songs can have on the lives of those who listen to them. People who they will likely never meet, but are truly grateful that they took the time to pen those particular words and then, to share them with the world. That the three or four minutes of cracking beats and well-crafted words they create, can help people through the toughest and best times of their lives. I hope so.

Does it matter that what I find in the song may be different from the intent, or inspiring event, of the artist? Or does the fact it stirs something in me, something personal and visceral, fill the artist's intent? In turn emphasising the power and gift of both song and song writer? To be able to create something that stirs other people and resonates years after it is written is a gift and one I hope the artists know we cherish.

What stirs me may mean nothing to others. Similarly, what stirs others may remain a mystery to me. That is the power of music. We all have a need to be lifted up when times get tough and there is always a tune somewhere that'll be up to the task. An artist who speaks to your heart in just the right way.

One of my favourites came up on my newsfeed today and I immediately had to click play. You see when any of those central pick me up songs, comes up in my newsfeed, or I hear a snippet in a shop, or on the radio, I find myself reflexively singing along. Mostly under my breath or when I am having one of those completely oblivious days, singing out loud no matter who's around. And always that same feeling is evoked and everything just feels better. Just like smells can bring back memories, music for me can bring back a whole range of emotions.

Times like these, by the Foo Fighters came up today, and it is one of my seminal songs. Actually, I have a few Foo Fighters' songs in my list, Best of You and Walk are also known to be played loud when I am having a shocker of a day. But today it was Times Like These and I found myself singing along before the video even began.

   

I love the rockier version, but this acoustic version brings the words to life for me.

I've loved this song from the first time I heard it in my pre-sick days. And now that I am ill it has become a staple of my collection, and one to which I always come back.

I am a one way motorway

I'm the road that drives away

then follows you back home

I am a streetlight shining

I'm a white light blinding bright

burning off and on.

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again.

I am a new day rising

I'm a brand new sky

to hang the stars upon tonight

I am a little divided 

do I stay or run away

and leave it all behind?

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again.

The chorus just rings true for me. "it's times like these you learn to live again". Being sick it is easy to feel helpless and hopeless. But it can also be a time to relearn and reinvent yourself.

I didn't plan on being so ill. I didn't expect to spend my 30's as a medical guinea pig. I didn't expect to require a wheelchair or cane or a gigantic dosette box to house my ever increasing pill collection. For a long time I let that weight bear down on my shoulders at will, and felt defeated.

But I sit here almost 40 and realise that I have learnt to live again. Not just live, but enjoy life and all aspects of it. I don't enjoy it despite the painful and darker parts. I enjoy it because of them. Those harder aspects of life make the good parts shine even brighter. They serve a definite purpose in my life in that I now have an appreciation for the little things that make me happy. Things that I would have missed before. They forced me to re-evaluate my life and my perceptions and to realise that enjoying life is a choice, not defined by my life circumstances.

And all of that is captured in that one song.

I have no idea if that was what Dave Grohl or the Foo Fighters had in mind when this song was recorded, but it is what I take from the lyrics. Those words and the music they are so carefully wrapped in, hold all that and more for me. I don't care if anyone else can understand that. This is my song. You can have yours. I know that Dave Grohl will never know how much his words mean to me. That this slightly strange woman from Australia, sitting on her couch surrounded by dogs and coffee mugs, hears that song and it works like a panacea for the soul during those tough times. He will never know, but I am still thankful that he wrote them.

Cheers
Michelle :)

Are you a Foo Fighters fan? Or do your tastes run in different directions? What are some of your favourite pick me up songs?

Hard

This is a stream of consciousness (or mind purge as I like to think of it) piece, unedited.

There's tired and then there's tired. Today is one of those days where tired requires italicises, bold font, underlines, asterixes the works. Before getting sick in 2006 I thought I knew what tired was, but now I realise just how clueless I was. It's one of those days where every molecule of vitality has been wrung from my body. Where nothing remains. Where breathing is arduous and if I catch myself thinking about it I lose the rhythm  How that's possible I don't know. Yet every time I think about my breath I lose it. It comes up short, or the rhythm is completely lost until it resembles some discombobulated Morse code that even my body cannot understand. And words, what are words, They flow through my mind a fleeting moment of clarity and then....nothing. I know I had a thought. It was coherent but now 3 seconds later it is gone. Lost to the ether as if it had never existed in the first place. Not even an echo remains  Speech is beyond me. To coordinate standing, breathing, being, with words, with responses and meaning becomes a......I don't know. An analogy is beyond me. Ask me tomorrow or the next day and I'll give you a cracker but now I am stuck with four letter words. HARD. Thinking is hard. Breathing is hard. Being is hard. There is no word in the English language that is sufficient to express the fatigue illness brings. I'm sure the Germans have a good one, or maybe the French, but I can't even be bothered Googling to find out. The tired of chronic illness is not like any other. One night out and pay for a day, a week, a month. Pay with exhaustion that renders the soul. The Ferryman has his due and I lay here on the bed typing with fingers that seem intent on their own path across the keys. I will them towards the keys of my choice. I beg and plead. But there is a disconnect. The fingers are not my own. Nor are my arms, my legs, my heart, my lungs. I am a being of discordant parts. And the tiredness is impenetrable  the tiredness conquers. I am wrong  Every part is wrong. But fatigue mutes my response. To move, to readjust or reposition is more than I am capable. So I lie incapable of movement, of speech, of thought, or anything. Everything is too much. My taxed body can take no more sound, or sight or touch. No more. A fractured person held together only by a heavy blanketing fatigue that will not lift for days. Bound and enduring. The weight of my body increases exponentially and time seems to stretch incalculable as my mind collapses under the weight of fatigue and I drift back into oblivion. Last thoughts longing to wake with the worst of it past. Last thoughts more feeling than words. Muted feelings. Too hard to think too hard to feel. To hard to be. Wake me tomorrow or the tomorrow after that when the worst is passed and my old normal re-establishes itself. The old normal which I bemoan and disparage but at times like this shines golden. Sometimes it's these steps back that make us appreciate what we do have. But for now I'll bury myself under doonas and blankets and pillows and form unintelligibly cries in my mind more a jumble of feelings and images than words. And just focus on being on surviving till I emerge once more. Till the pieces connect again and unity is once more established. Till I can breathe and stand. And stand and talk. And move in the tiny realm I inhabit. And live. Till the next time I dare venture into the world and am lost once more.

Michelle