Friday 30 August 2013

This week I rocked because....Episode 3

It's that time of week to think of all the different ways you've rocked it this week. In the midst of the gastric storm I've had this past week I thought I'd be struggling to find some victories but there have been quite a few.

This week I rocked because....

  • I managed to cook my son's birthday dinner which included 2 curry sauces from scratch (green and red Thai curry) and a strawberry flan.
  • I started to shred all my old work stuff that I have been holding onto since my last work day in November of 2007. I am about 2/3rds of the way through and feel lighter than I have in years.
  • I didn't beat myself up for crying when the pains in my stomach got so bad that I couldn't get out of the foetal position. 
  • I took on a new craft, albeit unsuccessfully. But that has only made me even more determined to master it. There will be a rag rug in my house and it will be awesome. Plus, I'm half way too a rocking set of Princess Leia hair buns!
  • I managed to hold my hand still long enough to take the picture above.

So tell me, how have you rocked this week?

Feel free to share with anyone else who you think may benefit from recognising and celebrating, just how much they've rocked this past week.

Michelle :)

And a little perky music to get you in the mood. Saw these guys back in the early 90s, when I had an, as then undiagnosed, badly broken foot. Even back then I was stubborn. 

Tuesday 27 August 2013

Coordination, fine motor skills, and Leia buns.

(Everything I do is done with the same level of coordination and elegance as Elaine, GIFSoup)

Long time readers will know that I have small fibre neuropathy (SFN). That means living with the conundrum that is simultaneous numb spots and burning/tasaring pain. It also means that the feeling in my hands, and particularly, my fingers is not all that great. They are also weak, shakey, and I have trouble with coordination (picking up a tissue can sometimes require Jenga-like concentration). And that, my friends, can get a bit dicey at times.

For example:

Last Sunday, Mr Grumpy asked me to help him trim his hair. A simple task. Only problems being that a) my weak hands have trouble holding onto the vibrating hair trimmer. And b) that I can't feel if I am cutting his hair or not, and rely on sound as a guide. Combine these two and you find Mr Grumpy yelping and grabbing his bleeding ear as I apologise profusely for trying to take his ear off with his hair shaver. Sorry honey.

I do hand exercises twice a day, as prescribed by my Occupational Therapist but it doesn't seem to help all that much. But hey, I persevere.

My squishy brain that I got at a conference years ago works a treat with my exercises.

In a fit of pique I decided I need to do something to try and at least partially remedy the situation.

So, of course, I picked the logical option, make a rag rug. I've always liked them. I watched some YouTube videos. I had a pile of old clothes that I could recycle. It seemed a no brainer.

Ah, the stupidity of brain fog. It lets you live in a happy, la-la land or rainbows and glitter and free macarons. It takes away judgement and logic and leaves you in blissful ignorance. Love you, brainfog.

Undeterred by eye rolls and mocking laughter from my delightful family, I pushed ahead.

Despite continuing mocking, Mr Grumpy enabled my insanity by not only purchasing, but cutting down a cheapo toothbrush to make my hook. I believe this is known as folie a deux.

Aint she a beauty?
(I'm not completely insane, this was suggested on a rag rug site,
 they are actually know as Toothbrush Rugs).

I spent an hour covering myself and the floor with layers of off cuts and threads cutting up old clothes. Did I mention that I have hand weakness? Apparently I forgot in that moment of hypoxia, as about halfway through my hands were cramping and my cutting becoming more Picasso, Weeping Woman, and less straight line.

I watched the videos again and thought I had it down pat. It didn't look hard. The woman speaking was very encouraging. Though in fairness, I'm pretty sure she could have sold me a time share, or introduced me to her Nigerian prince cousin, at that point.

Fool Michelle, Fool. Do not try to do anything when in the midst of brain fog. Stick with juggling the complexity that is sitting and breathing. Why do I never learn?

And yet I started. I stuck out my tongue and pulled my oh so sexy, concentration face. I swore. I pouted. I stamped my feet and shed a tear in frustration. And I rag rugged my arse off. And the result? Well what should have been a drink coaster-sized, trial piece, ended up as well, pretty much one of Princess Leia's hair buns. (Or one of Madonna's conical bra cups, as the men of the household pointed out).

(Real Leia, source)
Half-arsed, Leia.

It seems I may have some tension issues. Me tense? Never. Stupid hands. It seems I may have also missed the part of the instructions that said do not use elasticised fabrics. *sigh*

But dammit I will not be deterred. Not by lack of fine motor skills. Not by lack of brain cells. Or stamina. Or tactile sensation.

I will chop up more old clothes. I will watch those videos again and again. I will study then and take notes, with the same dedication I had the night before my big neuroanatomy exam. I will thread the piece of that old pair of Target slacks, and attack it with gusto!

I WILL make a rag rug, and it will be glorious.

I'll just need to lie down for a while first.

Michelle :)

I'm going to be Mrs Brightside with this damn rug. Even if it kills me.

Friday 23 August 2013

This week I rocked because.... Episode 2.

Well it's that time of week again. Time to sort through the fog that is the last week to think of all the times you rocked. Last week was fantastic and so lovely to see all the various things people had achieved during the week. It's amazing what we are all achieving in the face of various difficult health situations.

It's been an interesting week here at Chateau Rusty with a nasty pea-souper invading my brain for much of the past seven days. However this is no impediment to rocking.

This week I rocked because....

  • I managed to make a yummy roast vegetable salad, complete with cutting up the vegetables myself. No mean feat when your hands have all the strength of a wet tissue.
  • I painted up an old frame to display a postcard I love, that was sent to me by my BIL.
  • I coloured my hair and managed to minimise the dying off my forehead and ears.
  • I got through a few loads of washing with minimal need to recover.
  • I remembered to take all my meds on time all week. 

So tell me, how have you rocked this week?

Feel free to share with anyone else who you think may benefit from recognising and celebrating, just how much they've rocked this past week.

Michelle :)

And some more motivational music to start you thinking about all the ways you've rocked this week.

Tuesday 20 August 2013

The Price of Health

I hate going to my local chemist. Not because the staff are horrible, they're not. They are friendly and helpful. Not because they don't stock what I need. Even when they don't have what I need they are happy to try and get it in for me. Not even because travelling to, and waiting in line, is often taxing beyond belief. What I dread is the bill at the end. And the guilt that automatically goes with it.

The medications that keep me functioning each day quickly add up. And so do the bills. Hundreds of dollars a month to account for my various ailments. Some are covered by the Pharmaceutical Benefits Scheme which provides subsidised medications to the general population. Some are not. For some there are Special Access Schemes. For some there seem to be loopholes known only to a select few. Some, like my gaggle of supplements which I require due to issues with malabsoprtion, are not covered under any scheme.

I frequently receive emails suggesting I try this supplement or that medicine, or get tested for A, B, C, D. But the reality is that all of these options cost money. Money I don't have. I would love to try some other options. I would be thrilled to trial the drug that my gastroenterologist, neurologist, and cardiologist all agree has a good chance of taking care of some of my worst symptoms. But when the cost of that drug is more than double my monthly mortgage repayment, it's simply not feasible. 

Like many I try at times to stretch my medications. To make them last longer. To put off the inevitable soul crushing bill at the check out. But this can only be done for so long. Until your body lets you know in no uncertain terms that you need those medications to keep on functioning, even at a minimal level. I know from friends that there are many patients who simply don't fill their prescriptions. Who simply cannot afford to fill even the most basic of prescriptions.

So many of us suffer in silence. We struggle on. Many fall in the grey zone. Where the one partner who can work earns enough that you cannot qualify for a Health Care Card, yet don't earn enough to keep their heads above water thanks to ongoing medical costs. Those who do qualify are often living on such a limited income that they can still hardly afford their most basic health care needs, if they also want a roof over their head and food on their table.

I know we are lucky here in Australia. Health care is far more affordable than it is in other countries. But if you are unlucky enough to have a complex condition that requires highly specialised care from a number of different medical disciplines you fall through the cracks.

Medications are but the tip of the iceberg. With petrol prices on the rise, a trip to the specialist in the city can be prohibitive. Partner's and family members take unpaid leave to attend appointments, or if a partner is hospitalised take unpaid leave to take care of children. Many specialists and their tests are not even close to fully covered by Medicare rebates. Or if highly specialised enough, then patients are left to pay full price. Many patients have complex gastric issues requiring specialised diets. Again there is no coverage for specialist food products. Specialist exercise programs are recommended, yet again are not local and are frequently prohibitively expensive. Even something such as compression stockings, frequently recommended to aide in the management of Dysautonomia can be $100 a pair.

So often knowledge of programs that can help cover some costs eg for mobility aides like wheelchairs or walking frames, is held by select groups. If your treating doctor is unaware of the program you may never know of it's existence and be forced to try and scrape together enough money to buy the items that may simply allow you to leave your home or have a shower.

If your illness is rare, or poorly understood, you do not have the luxury of changing doctors. There may be only one or two specialists in your city, or even country, that know your disorder and can provide your care. There may be no options in the public sphere, so private fees must be paid. Often patients have searched far and wide to finally find a single physician who understands their disorder or the complexity of their presentation. For some, only a select number of specialists are authorised to dispense the medication they require.

I, like many, am a motivated patient. I want to be as well as possible. I want to stay out of hospital and prevent or slow any deterioration. But my care is complex and multi-factoral. It is managed through life style changes and aides, medications, diet, and exercise. Each helps to manage a layer of my complex needs. I see multiple specialists and have a variety of tests to both monitor my progress and try and discern why new symptoms arise. Each has a financial burden.

I would love to try new treatments, both traditional or alternative. I would love to do everything possible to maintain my health. But instead I must prioritise my needs. Yes, I need to go back to my gastroenterologist for my ongoing stomach pain and weight loss. Yes, I need to go and see about my hips that wont stay in place or my back which has me in constant pain. Yes, I need to get better control of my migraines. Yes, I need to see my neurologist about the significant loss of muscle in my right hand. Yes, I need to see about this or that. But I must select which of these is most pressing. I make a list that I gradually work through because to address all at once would be financially crippling.

None of these are one off expenses. Multiple appointments each year, both medical and allied health. Monthly prescriptions. Weekly dietary needs. The list goes on. And if more than one family member is ill, then these costs double or triple. In the short term this may be sustainable. But when a condition is chronic, the year-after-year costs, with no end in sight, become difficult, or in many cases, impossible to sustain.

The other price of health is the emotional toll. The stress and the guilt for the financial burden we place upon our nearest and dearest. Bankruptcies and relationship breakdowns abound. A toll that patients and their families everywhere, are dealing with in silence.

The reality is that health care has to be budgeted, alongside the mortgage, and school fees, and petrol, and insurance, and food, and....... It doesn't exist in isolation. It cannot be the only focus of a family budget.

The true cost of health is hidden.

The true cost of living with a complex and chronic illness even more so.

It's not pretty, but it is reality.


Friday 16 August 2013

This week I rocked because....

I'm starting a new weekly event here on the blog. It's something I've been thinking about since I wrote this post last year.

So often we get overwhelmed with the daily stress of dealing with chronic illness. It can seem like things never get better. That it is just difficult, after stressful, after disheartening.

Unless we consciously start to look for the good, however big or small it may be, we can miss just what we do achieve. 

Unless we start to document those events, it is easy to forget just how much we've achieved.

Victories come big and small. For some, it could be making it through a shift at work. For others, simply getting out of bed or managing a shower. Lets face it, some days simply managing not to cough-sneeze your medication into your right nostril (true story) is up there with creating world peace. Each is an achievement and needs to be celebrated. 

So from now on Friday on the blog will be known as, 

This week I rocked because....

In the comments take the time to think about and write what you've achieved this past week. 

I'll start:

This week I rocked because

  • I made it up to 10mins on my minicycle.
  • I managed to shave one and a half armpits (no easy feat when you can't lift your left arm).
  • I managed to stew up some rhubarb.
  • I potted one plant.
  • I made it through a night out, and got to sing show tunes.

So tell me, how have you rocked this week?

Feel free to share with anyone else who you think may benefit from recognising and celebrating, just how much they've rocked this past week.

Michelle :)

And just in case you're having trouble thinking of the ways you have rocked, I give you the best motivational song of all time. Put on your beret and your way too tight jeans, and get your strut on. 

Wednesday 7 August 2013

Translating symptoms into the reality of day-to-day life.

[Image: a black and white vintage image. A woman stands to lean on her kitchen bench next to a sink piled with dishes. One hand is on her chest, the other holds a tea towel and her eyes closed she looks a little overcome. source]

A couple of months ago I put this status update up on the blog's Facebook page...

"Cooking biscuits with Dysautonomia:

- Decide to make biscuits
- Lie down
- Get up and find a recipe
- Lie down
- Get up and make biscuits
- Lie down
- Put biscuits in the oven
- Lie down
- Get biscuits out of the oven
- Lie down
- Run sink to wash dishes
- Lie down
- Wash dishes
- Lie down
- Put biscuits on a rack to cool
- Lie down
- Go to eat biscuits and hit with nausea
- Lie down
- Be happy that although you currently can't eat them, you did, in fact, make biscuits.
- Lie down.

Time elapsed: 1 1/2 hrs.
Energy levels expended: 3 days worth
Happiness level: rather pleased with self."

....and it went off. My moment of frustration/triumph was familiar to so many.

You see it's easy to sum up Dysautonomia as a bunch of symptoms: Low/high or fluctuating blood pressure. Bradycardia or tachycardia. Nausea, vomiting, constipation, diarrhoea. Profuse sweating, no sweating. Syncope, near-syncope. The list goes on and on. 

But what does it all mean? 

Our doctors concentrate on the numbers, the blood work and checklists. But that is only part of the equation. For those of us living with Dysautonomia, it is not the symptoms that matter so much, but more how they impact on our day-to-day life. I can give you a list of numbers, eg bp 90/80 and hr 42. Yes, the bp and heart rate are low and the pulse pressure to narrow. But that alone doesn't tell the story. The real story is that, like in the example above, the normal aspects of life often become Herculean acts thanks to those numbers.

Let me explain.

I wanted to make biscuits. A normal task. A simple task. But those numbers above mean that making biscuits becomes a lesson in perseverance and determination. Those numbers mean that the longer I stand at my kitchen bench the more the blood pools in my feet. It means I start to get dizzy and the world becomes grey. The hand holding the knife to cut up the walnuts starts to shake. Weakness infuses my body and I either sit on the floor or fall over. It means that holding that knife becomes a real danger as it keeps slipping from my weak and now sausage-like fingers. It means picking up the ingredients off the bench will involve dropping, spills and knocking things over. It means when I reach up to grab the flour, the raising up of my arms compresses the blood vessels leading to my brain further limiting the blood supply to my brain. It means that finding the flour becomes a bit of a potluck as the world starts to go grey and I can't read labels. It means that I can't hold onto the flour and I risk dropping it on my head or my feet. It means once more I need to lie or sit down because my legs won't hold me up. Or I accidentally lean against the hot oven as my body begins to sway. It means I am too weak to hold the bowl to stir the mix. Or that I forget ingredients as brain fog sets in. That I am so unsteady that I can't safely open the oven, hold the tray or put it in. It means when the buzzer goes off I must ask for help to get those hard earned biscuits out of the oven. It means if there is no one around I risk burns as weakness combines, with the overwhelming heat and my inability to judge the distance between my hand and shelf in the oven. It means my body, exhausted by its efforts, will respond with nausea and a need to run to the loo, often mixed with almost passing out. It means I can't eat the biscuits I have worked so hard to create. It means I'll need to rest after. Sometimes for hours. Whilst the biscuits sit there mocking me. 

So often we are told it is just an issue with blood pressure or heart rate. We are told to simply "push through". But the reality is very different. The real world consequences of just a blood pressure or heart rate problem are much greater.

It may seem that we are doing little during the day when we say we got up, showered, cooked a meal, and rested. But each of those tasks can take an enormous amount of energy. Each of those tasks is often only completed through sheer stubbornness and determination. Combined with a large portion of luck.

Dysautonomia is not just a collection of symptoms. It is not being able to make a meal for nausea. It is not being able to go out for a spontaneous coffee. It is not being able to sit through a movie at the cinema. It is not being able to shop for groceries. It is not being able to attend school events. It is not being able to vacuum your house. It is not being able to wash your hair. Or simply not being able to just decide to make a batch of biscuits.

But those times when you do manage one of those tasks, you celebrate as only someone with a chronic illness can. Because you know just what it took to get there.

And a plate of hard-won biscuits is, after all, a sweet sweet prize. 

Michelle :)

Monday 5 August 2013

Finding Support by Cleaning House.

(I've lost the link for this, but gosh I love it)

One of the earliest lessons I encountered when I became ill is that some people are inherently compassionate, and some are simply incapable of even understanding the term. I also learnt that sometimes compassion comes from unexpected places and sometimes it is lacking in the places where we instinctively think it will reside.

It was a hard lesson.

When I first became ill I had expected that those nearest and dearest would be there. It's a natural assumption. In our time of need we expect that our family and friends will rally. That there will be casseroles and fluffy socks. And much in the way of hand holding and support. Some get lucky. But sadly for many that is a scenario viewed only on their TV screens. The harsh reality is that not everyone will be there as we expect.

I still remember calling my a friend (now ex-friend) early on in my search for a diagnosis. I was in tears. Completely overwhelmed after being told that I may have MS. She promised to come over after work, then rang on her way home to say she was too tired and did it matter if she didn't come over. It hurt at the time and I must admit even now as I type all these years later, I still feel a twinge of that hurt. But that wasn't the first or last hurt that I have experienced over the past seven-years. Sometimes in the form of an uncaring comment, an exclusion, or action. And I know I am far from alone.

Part of me still wishes for the close and large support network that others have in their daily lives. Every day I see people diagnosed with particular illnesses and suddenly there are fundraisers, rosters to help out with cleaning and cooking, and designated drivers to get them to appointments. Admittedly, I instinctively recoil from that kind of attention, but a small part of me wishes I had even a little part of that. But I realise now, as is the case for many others, that it is simply not to be.

I don't have a casserole illness, I don't have a black and white disorder, and I don't have something that will ever get better. I live in a land of grey that is hard enough for me to navigate let alone anyone else. Society as a whole, does not do well with death, dying, or chronic illness. How do you respond to someone who will only ever slowly get worse? There are not many acute moments with Dysautonomia, just the slow trudging path of chronic illness, punctuated with yet another hospital or ED admission. No clearly defineable end in sight. Nothing to clearly fight. Normal parameters of caring, disease path or goals are no longer applicable. Few are those who can stay such a challenging path by our side. And some simply find it overwhelming or tiresome. For some your illness or suffering, is quite simply bothersome. It's a hard realisation to live with. But it is a first step in finding the positive support you need.

Being chronically ill has allowed me to clean house in a sense.

I have no doubt that I would still have a lot of those other people in my life if I had never become unwell. I also realise now that I attracted and allowed others in my life who were never really there for me even before I became ill. Back then a large part of me was so used to being in a certain roll that I never thought of it as a problem, or that I was worthy of better. It was simply how it was. And it had never been challenged. I was very independent and had always managed relying on myself alone. I was used to being the helper, not the helped. I had never been in a position where I needed true and long-term support. A position where my own reserves would run dry. My role had always been as hand-holder, and no doubt I would have continued in that role if my health hadn't deteriorated.

It was a strange and sudden change in many relationships. All of sudden my illness became an inconvenience to others. I couldn't drive to their house as I always had, and it suddenly became too far for them to drive to mine. I couldn't go out often, so they stopped inviting me. I couldn't listen on the phone for hours to their problems, so they stopped calling. I didn't get better and they became bored. I couldn't give them what they wanted so they left. My illness became boring and inconvenient.

Having people in my life who took without giving, or only giving when it suited, was exhausting. Pre-sick I had the capacity to deal with that drain and lacked the wherewithal to see the toxic nature of those relationships. Post-sick I didn't have the emotional or physical reserves to deal with their demands and it suddenly dawned on me that I could say no and that I deserved more.

It took me a long time to understand that compassion simply isn't in some people's DNA. For a long time I blamed myself. It took me a long time, and nearly a year of counselling, to understand that it was okay to say, and actually believe, I deserved better.

I like to think of my current support system as a fine wine. Over the years it has been distilled to those who truly care. I don't have to deal with the hurt that comes from fair-weather relationships. Instead I concentrate on, and am grateful for, the love and support I get from the few in my life who are really there for me. Who give me support without always reminding me how much of a burden my illness is for them.

Not having those negative influences in my life, or being able to compartmentalise those I can't avoid, has been a godsend. A gift that I recognise now, though admittedly, not so much at the time.

Now I have people in my life, in real life and online who are truly supportive. Who get me, my sense of humour and my needs. They are there to share a shoulder or a laugh at need. People I would never have expected have stepped up, and I have also made friends in the unlikeliest of places. And I discovered that supportive relationships can, and do, go both ways.

It is better to have a handful of people, or even one, in your life who truly cares, than to be surrounded by a large amount of people whose ability to care is conditional or inconsistent. Sometimes being surrounded by people who really don't care can leave you feeling more alone than actually being by yourself.

Being chronically ill you get to see the true nature of those who surround you. It is easy to be there during the good times. But when the tough times hit it quickly becomes clear who has the strength of character to stand by you. When those tough times persist or become complex, many may fade away. It's easy to feel abandoned. But it is important to also remember that often those that are left are the cream of the crop and the true of heart.

Sometimes blood and history are not a guarantee of compassion or support, no matter how much we wish it were otherwise. But that moment when you find a person who truly cares it's like a light goes on and you wonder why you put up with less.

Michelle :)

Thursday 1 August 2013


Today was another day of joy changing my dressings. Dodgy collagen means that two weeks post-surgery my wound still isn't fully sealed. There's one pesky patch that teases me. One day I look at it and think, "Finally. Finally, it is starting to come together." The next day I have a line of open, pink wound. Sitting there. Laughing at me. I'm pretty sure I heard it whisper "sucker", complete with maniacal laugh. Ugh. I know I shouldn't get my hopes up. That I should just be patient. But patience and I aren't good friends. Never have been, and likely never will be. Add in that day-after-day that the adhesives needed to keep my dressings on, and the wound protected, are eating away at my skin and I know that scarring is once again in my future.

Many have asked if I am worried about scarring. 

Am I worried about people being able to see the lump on my chest where Jeri sits? 

The answer is simple. No. 

I have a number of scars on my body. I don't try and hide them. It never occurred to me that I should. I don't see them as a cause for concern. I don't see them as something that I should think of with shame or embarrassment. 

They tell me tales of my life. And speak of gifts big and small. 

The stretch marks on my stomach told me of the gift of two beautiful boys. 

The scar on my right breast told me I would be given the gift of attending way too many school concerts.

The scar on my left breast told me I would have the gift of spending many late nights making birthday cakes.

The scar on my stomach told me that I would be given the gift of seeing my kids grow up.

The scar on my thigh told me that I would have the gift of more years with my husband.

The scar on my ankle told me that I would have the gift of spending more Sunday's having family roasts.

The scar under my left breast told me of the gift that my intuition was right.

This new scar tells me of the gift that I will wake up tomorrow, and the next day, and the next. 

It tells me of the gift that I will be able to sit on my couch and argue about what we'll watch on TV tonight. That I will be able to yell at my kids for not cleaning their rooms. That I will do a bazillion loads of laundry. That the cleaning of many toilet bowls are in my future. That I will be able to argue with my husband over stupid little things. That I will be able to both snuggle with my dogs and yell at them for chewing up yet another remote. That I will be able to embarrass my kids with hugs in public and stories from their childhood. That I will be able to hug them and spend time with them. That I can hold my husbands hand this night and the next and the next.  

This new scar gives me time.

Time that suddenly became more pressing.

It gives me hope. 

Hope I'd lost.

It gives me possibilities. 

Possibilities I'd started to forget.

It is a gift.

A gift I never imagined.

There is no shame or embarrassment associated with with this scar. Or any of the others I wear.

I will celebrate it and yell my joy from the rooftops. This scar is a gift, not a burden. It is beautiful. And I will wear it with my head held high and a smile on my face.  

Michelle :)