Falling down the rabbit hole.

(source)

The last two, three, four months have been hard. My body has decided to do one of those fancy steps down, on the stepwise progression thingy. Or more, screaming, flailing leap, than step. I've tried not to let it affect me but it has. Denial is hard to maintain when you can't do a poo without face-planting on the tiles and being dragged limp and slurring to your bed. Or even better when no one is home and you're lying on the tiles of your bathroom, pants only just covering your sagging butt cheeks and your ever faithful canine companion comes, sniffs your forehead, and then sits promptly on your head. Or when your normally stoic other half keeps coming in every five minutes worriedly touching your forehead. Or you go to walk to the kitchen and end up on your hands and knees behind the couch. Or....

I can walk less. I can stand less. I have less control of my body temperature. And I've started losing weight again. But I have more syncope. And more pain, be it my feet, my stomach, or my head. None of my tricks are working. And as my cardio pointed out last week, I'm out of medical options.

And all of it is beyond exhausting.

I feel like the months have gone past and I missed them. I mean I know I was there. It's not like I have a Delorean or anything. Although that'd be mighty cool if I did. It's just been a fog of illness. A fog that has eclipsed the wider world. It's been one of those times where dealing with my body takes every shred of energy that I have and everything else is shut out into a half-arsed, half done, package of incompetence. Be it blogging, replying to emails, unpacking at our new house, or breathing, it's all been a half-arsed effort.

I find myself picking little bits of random jobs in the vain hope that I'll finish one. I break down the tasks into a hodge-podge of parts that I convince myself are logical. But instead I end up picking such random bits that not even those end up finished. I then of course beat myself up for not doing the important tasks that keep piling up. I want to paint, but feel guilty because I know there are emails to answer. I want to garden but I know there's house sorting that needs to be done. I haven't even allowed myself to catch up on The Walking Dead because I know there are other MUST DO things that are simply falling through the cracks. Not that that prompts me to action. I am out of spoons. Out of energy. Mental and physical. Simply because every last bit of resilience and energy is dealing with the most basic aspects of survival eg staying upright, or laying on tiles and repeating my new mantra "I do not need to go to the ER. I do not need to go to the ER. I do not need to go to the ER".

I've tried to be normal.

Head out for a coffee. Come home head between my legs, be dragged into the house to pass out on the bed. I've been out looking at potential new houses, only to return home a green-tinged blancmange, or simply cancelling at the last moment. I had a lovely visit with my Uncle and Auntie book-ended, by a body intent on expelling everything I have eaten in the last year, out of either of two burning orrifi, face-planting on the tiles in my bathroom, and coma sleep. I saw my cardio in the city last week and am still paying for it today, almost a week later. I have to head back to the city for more neurological tests in less than four days and I have no idea how I am going to manage.

We planned for tea out with friends at an actual restaurant. I prepared for days in advance. But my body said no. I'm not sure if it was the rapid revisit of the plain poached egg I'd attempted earlier in the day or the chunk of perfectly poached egg white that came out of my nose when I sneezed an hour later, that was the clincher. But I was made aware of the fact that I was not well enough to head out into society, or into my lounge. Luckily our friends were willing to do plan B of take away here at home where I could crawl into a ball on the lounge. They even put up with our insane dog who apparently had a snort or 12 of coke before they came. Good people.

But what it comes down to is....

....I'm missing life.

My life.

It's just disjointed pieces of late.

Finding a spot to focus on. A task that I can actually complete in it's entirety seems impossible. Everything is sitting not done, half done, or forgotten in my sieve of a brain.

I waste energy on putting up the good front. I'm coping. It's all good. I can still laugh at it all. Life. I'm playing the part, not really living it. The truth is my body and I aren't doing all that well. Coping with a big deterioration is hard. I should say that out loud ten times. Scrawl it across my mirror and write it on my arms. Because it's the truth. I tell others to that they should speak the truth of illness, the ups and downs, and here am I still hanging stubbornly onto my pride. That message ingrained from my childhood that says "suck it up and be strong, don't be weak." The message I convince myself that I've conquered, until I realise that it's snuck back in and taken up residence once more in that hyper-critical part of my mind that likes to whisper sweet nothings in my ear.

Somehow I lost the ability to give myself the permission for space. Permission to breathe. Somehow I have forgotten that it's okay to say I'm really having a tough time with this crap. That sometimes it gets scary and sad. That I'm tired of being strong. All. The. Damn. Time. And that when you only have a thimble full of energy it's okay to use that thimble for yourself.

Life may be piecemeal for a while yet. But hopefully I'll get better at picking the pieces that are more healing.

I may be falling down the rabbit hole, but even Alice found her way home.

Michelle

Spelt, walnut and cranberry hot cross buns

After many requests, I give you my recipe for spelt, walnut and cranberry hot cross buns. Now given that I mostly cook by eye or feel I had to guesstimate some of my measurements. For example, I use two largish handfuls of walnuts and I sort of sprinkle my cinnamon and all spice until it looks right. So you may need to fiddle with the measurements a bit until you get the right amount for you.

My arms of patheticness mean that I can no longer kneed dough or chop things. Instead I use a Kitchenaid to mix my dough and a food processor to chop my fruit and nuts. I also use a square silicon cake tin as nothing sticks and I don't need to paper or butter the tin. And a trusty plastic re-sealable sandwich bag makes a fantastic stand in for a piping bag. They freeze really well and I will often put half in the freezer for later use so they don't go off.

Making these usual uses up a full day of spoons. But they really are worth the effort.

Ingredients:

Buns.
700gm plain spelt flour ( I use an organic white spelt)

80gm castor sugar

2 sachets dry yeast

2 teaspoon cinnamon 

1 teaspoon all spice

180gm dried cranberries

200gm walnuts

pinch of salt

1 teaspoon vanilla essence

100gm butter

300ml milk (I use a lactose-free milk by Zymil)

1 egg

Crosses.

2 heaped tablespoons spelt extra
water

Glaze.
1/4 cup castor sugar
1/4 teaspoon cinnamon
water

Method.

To make buns.
1. Mix flour, sugar, salt, yeast, cinnamon, and all spice, in a bowl.
2. Chop up walnuts and cranberries (I do this in my food processor as my hands are too weak to cut them) and stir through flour mix.
3. Place butter and milk in a saucepan over low heat. Remove as soon as butter is melted.
4. Make a well in the centre of the flour, fruit and nut mix and pour in warm butter/milk liquids. Mix through.
5. In a separate bowl beat egg and vanilla together. Add to dough.
6. Kneed mixture for 10 mins by hand. (I use my Kitchenaid with it's dough hook as I can no longer mix by hand. It is a rather heavy dough so if using a machine to kneed dough, do it in 3 batches for 5 mins.)
7. Place dough in a oiled bowl and cover with Gladwrap. Set aside in a warm spot for 40mins.
8. After 40 mins cut the dough into 16 equal pieces. Lightly kneed each piece and form into a ball. Place all 16 pieces into a square cake pan.
9. Cover with Gladwrap and set aside for another 40mins.
10. At the 30min mark pre-heat oven to 200C.

To make crosses.
11. Mix 2 heaped tablespoons of spelt flour with enough water to make a thickish paste.
12. Place mixture into a plastic sandwich bag.
13. Snip a corner off the bag.
14. Pipe mixture over risen buns to make crosses.

15. Place now crossed buns in oven for 20 mins. (I tend to turn mine 180 degrees at the 10 min mark to ensure equal browning.)

To make glaze.
16. Place sugar and extra cinnamon in heavy based saucepan.
17. Add a small amount of water to cover sugar.
18. Bring to boil and leave for 1-2mins and take off heat.

19. Take finished buns out of oven.
20. Whilst still in tin, brush glaze over hot buns.
21. Leave 10mins in tin before transferring to a wire rack to cool.
22. Toast and slather with butter. Enjoy!

Cheers

Michelle

And a good song to listen to whilst you chomp down on your fresh hot cross buns.

And the words pour out.

fatigue hits
body splits
mind is lost
is this it
is this all there is
is this all there will ever be
concrete body
made of concrete parts
assembled and disassemble
as I sit passive
time passes
time swirls
fatigue is all
fatigue is everything
pressing pushing
down
down
down
into the earth
it pours up and over
drags me down
immobile
incoherent
incorporeal
spirit rendered
spirit flailing
clawing
broken words
broken dreams
broken body
the tether is at breaking
then
slowly
a moment of reprieve
the first stirrings of re-emergence
the chance
a hope
small
insubstantial
possibility
a light
a hand breaks free
a life breaks free
I break free
exhaustion turns to blessed sleep
freedom
freedom to dream
of better days
and better nights
of time
my time
our time
all of time
time of joy
time of bliss
time of sun on faces
and wind in hair
time of earth through toes
time of soft couches and warm toast
of books and worlds far away
to lose myself in words where exhaustion does not exist
where pain does not exist
where the fatigue of being does not exist
lose myself in words
in hopes
in ideas
in me
in new imaginings
in unlaboured breaths
and unclenched jaws
in loose shoulders and untangled guts
light shines around me
within me
from me
out into the world
to become one with the swirling mass of colours
the infinite variety of life experience
to touch other colours
other spirits
to give and receive
at need
alone in our experience
together in our journey
hands held
hearts carried
worries shared
we forget actions
but remember how we feel
me
you
us
strength in numbers
we are not alone in the swirls of darkness
we are not alone in the barbs of pain
we are not alone in fear and doubt
roads much travelled
when bodies break
roads much travelled
and survived
roads that lead to light
all good quests have trial and tribulation
we come the cusp of failure
so that the light is sweeter
and the sky more clear
us
you
me
all

Michelle

Letting it go.

(source)

A friend posted a video today about a woman with cancer who's friends and family shaved their heads in solidarity and posed for a photo shoot. It was beautiful and I must admit that I teared up. The outpouring of love and support she received in that act was touching. But part of me was also sad. Sad because for so many in similar situations that level of support will only ever be viewed vicariously.

Serious and chronic illness is a litmus test of our relationships. The bonds we have with friends and family are laid bare and many come up lacking. It quickly becomes clear who values you and who doesn't. It quickly becomes clear that bonds of blood and time are not indicators of support. It can be a hard pill to swallow. And, as my reaction to this video reminds me, it is something with which I continue to struggle.

Part of me still wants and expects that certain people will step up. That they will suddenly change their behaviour and act even partway like the people in that video. If past behaviour is the best predictor of future behaviour I should know by now that it's never going to happen. But part of me still hopes. And old hurts are opened anew. You'd think at age 40 I'd have come to terms with those hurts. But instead I sit here musing over feelings that seem to be sitting just below the surface waiting for something to prompt them to rise again.

I'm not alone in these feelings. I've spoken with many other patients who experience the same hurts. Dysautonomia is not a casserole illness, even at the best of times. It's hard to understand, and has no cure. It can last for years and the deterioration can be slow and punctuated by repeated exacerbations. Sustaining the momentum of caring can be exhausting. And yet some manage. When I see others who are surrounded by numerous loved ones, lifting them up and going out of their way time and again to support them, it brings home that that is not my experience.

Some days I am better at dealing with the hurt and others it is hard. I wish I knew the secret of how to let those hurts go. To move on and focus only on the few who have stood the test of time. The true gems in my life. But part of me continues to gnaw on those wounds. To pick them apart and poke them till they bleed.

Illness is a lonely process. No one can share what you go through. But they can provide support. It doesn't take much. A phone call. A text. A silly joke posted on Facebook. A reminder that they are thinking of you, and that they care. A reminder that your life and your experience matters.

It is hard to understand when that doesn't happen. It goes against how I would act should our positions be reversed. When they have been reversed.

I am grateful every day for those who show they care, online and in real life. For those core people who make me feel loved and safe. Who hold my hand when I need it, instead of expecting me to hold theirs because my illness is a burden to them. For those who offer their concern and care and don't tell me how much of an imposition or hardship it has been for them. For those who know what I deal with and how I deal with it, and don't flit in only to tell me how to manage my illness that they nothing about, before flitting out again. For those who give me dedicated time rather than the scraps left over from their busy lives.

I'm going to work on letting those people and the hurt they represent, go.

I'm going to focus on the few who matter. The few who bring love and joy into my life.

I'm letting go of the rest.

I'm going to give myself 

the gift 

of starting the process.

To end expectations.

To end false hope.

This time
I'm going to heal

and shake off the burden

of hurt 

and disappointment.

I need to.

I have to.

I'm letting it go.

Michelle

This is NOT funny.

I'm tired. Tired of having the same conversation, about the same issues. Year after year after year. Back when I started this blog in 2009 I was discussing the hurtful comments challenging the validity, or existence, of illness. I have banged on about the whole myth of the look of illness and challenged perceptions about what constitutes disability. I have written so many posts on the topic that I couldn't even pick one to link up. And still, nearly 5 years after I first pushed publish, pictures like the one below are doing the rounds of the Internet on a regular basis. And people continue to find them funny.

When I write an article many readers tend to relate to the issues I discuss. They have had the same experiences and the same reactions: hurt, anger, frustration, an overwhelming desire to resort to violence. But in many ways this is preaching to the converted. Those who read predominantly share the same views on these topics. But in the wider community it seems that little has changed. 

This meme is doing the rounds, again. It ended up on Mr Grumpy's timeline recently, despite the poster knowing that he has an ill wife. It has ended up on the timelines of numerous fellow patients, posted by friends and family who know their situation. And it hurts.

The posters have not taken the time to think about the message such a meme sends to friends and family who are living with illnesses that don't meet the limited ideal portrayed in the media. It also says a lot about how society continues to view disability and illness in this day and age.

It says your illness and your experience is a joke. When they laugh at such an image they are essentially saying you, your illness, your challenges, pain etc are meaningless. When those who use a wheelchair but can still mobilise independently over short distances see such an image it is hard not to take offence. We know the mental and emotional challenge it can take to simple accept the need for a wheelchair. We know that a wheelchair means difference at an age where most are simply out living life, starting careers, studying, having children or travelling. We know that every time we head out into the world someone will find our life a joke. Or, if you are unlucky enough to be this woman, you and your situation, become a beacon for global for mockery.

I can say we shouldn't care. 

I can say we should simply ignore this meme and others like it.

But sometimes no matter how stoic we are, such attitudes cut deep. 

And frankly, why the hell should we have to put up with mockery and disrespect on top of having to live with disability or debilitating illness?

Those who have not personally experienced serious or prolonged illness; who have never known the challenges of disability or seen how they affect a loved one, seem to still find the whole experience as nothing more than fodder for laughter.

What is lacking in our culture that many feel they have the right to mock, judge, or police others, for circumstances they don't bother to understand? When did compassion and minding your own damn business, get replaced with picking others apart for sport?

The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps. 

Without my wheelchair I would rarely leave my house. Without my wheelchair I wouldn't shop. I'd never go to a gallery or a market. Or even attend many medical appointments. I have even been known to use my limited energy to push myself up from my wheelchair to grab a product from a higher shelf. I could very easily have been the woman in that picture.

If those who laughed at the above picture, or mocked others in the community for standing from their wheelchair, took the time to speak to the person in question they may find that they are recovering from surgery or illness or have Dysautonomia, Myotonia, Multiple Sclerosis, cancer, lung disease, heart failure, Ehlers Danlos Syndrome, Arthritis, Chronic Regional Pain Syndrome, or a host of other disabling conditions. 

But should these people have to explain themselves to the mockers? 

Should they have to lay bear their medical history to receive a basic level of respect?

Should we all wear coloured vests or carry neon signs stating our sick credentials to be treated with dignity?

The meme above, that continues to make the rounds on the Internet, is nothing short of insulting and reflects a basic lack of empathy and character upon those who both continue to share it, and those who laugh or say nothing.

I am tired of having to justify my existence to the wider community. I am tired of friends having to justify the use of mobility aides such as wheelchairs. I am not here to educate every idiot who finds the above meme funny. I have enough on my plate to deal with on a day-to-day level. I don't need the added burden of playing the role of teacher every single day, day-after-day, year-after-year, for people who don't bother to think of how their attitudes affect those of us who have been in that woman's position, or that woman herself. Or who don't realise that they, or someone they love, may one day develop an illness or acquire an injury that will put them in such a position.

This is not about a lack of sense of humour, as is often the accusation made when people like myself question such jokes. Many of us in the chronic illness and disability community have well developed senses of humour. It is what helps make our lives bearable. We find the funny in the most unfunny of experiences. But we are using our own experiences, we mock ourselves not other people. We tread the hard path, the pain, the fear, the tears and the doubt, and we have the right to use our experiences. Others do not.

It is me who cannot stand, who collapses on the floor, who vomits up food on a regular basis, who cannot always hold a glass, and who cries into my pillow from the often unrelenting pain in my body. It is me who is often unable to walk from my bed to my bathroom and has undergone numerous painful and scary medical tests. And it is me who needs to use a wheelchair to access the world and doesn't meet the simplistic perceptions of others. 

I have paid my dues and can laugh at my experiences. But when able-bodied people post memes like the one above, when they mock, or make derisive comments, they are misappropriating and minimising my experience and the experience of many others, for a cheap laugh.

It is nothing short of insulting and offensive.

Just as we shouldn't put up with sexist, racist, or homophobic memes, we shouldn't put up with this ableist crap either.

I am tired of having to explain myself. But I am more tired of simply sitting back and putting up with discrimination sugar-coated as humour.

If you post, share, or laugh at memes such as this, you are an arsehole. If you see it and say nothing, you are giving your tacit approval to that attitude. And I for one am going to call you on it.

Michelle

How many red shoes is too many red shoes? (AKA I may need a red shoe intervention.)

Hello my lovelies.

Longterm readers of the blog will know of my love of the colour red (my old loungeroom, my kitchen appliances, my dog's bed, my garden chairs, pots for plants, cushions, the list goes on, Mr Grumpy even feeds my addiction recently buying me a huge red umbrella for the back yard. Even the camera that took the photos for this post is red and has a red case.). They will also know of my love of glittery, impractical red heels. They may not know of the number of red shoes I now possess.

Having moved recently I have been forced to confront my addiction. Or, as I like to think of it, my beautiful red distraction from illness. I have still to find some pairs.

There is nothing more cheery in life than a pair of red shoes. From my Dorothy heels, to my slippers and even my gardening shoes and gumboots, my feet are frequently enclosed in red goodness.

Many I have had for well over 10 years. Purchased with glee back when I was still able to work. And from as far afield as Singapore, on my last overseas trip prior to that pesky illness thing. Yet others have been an impulse buy on a bad day when only a pair of red, polka dot, bow-topped flats could make the world a better place.

I still look longingly at red shoes. Online, or face pressed hard against the window of shoe stores who's pretty, happy offerings are beyond my meagre finances. Oh sweet red leather, faux leather, fabric, sequinned, glittered beauties. How I wish I could take you home.

 Backward or forward, they are a perfect line of loveliness.

Who needs a basket of puppies when you can have a basket of red shoes? 

This is my basket of happiness.

Maybe just one more pair. I can stop any time I want. Really I can. There's that pair of red faux-suede knee high boots that would be perfect for Winter. Or, that pair of patent, red Doc Martins I spotted the other day. Or, the pair of red glittery runners. Or......

Am I alone in my red shoe fetish? Can anyone top my addiction? Or tell me that I really need those knee high boots for my mental health.

Michelle :)

Don't forget to head on over and donate to my Clicking my heels for Dysautonomia, fundraising for Dysautonomia Research at The Baker IDI here in Melbourne. (Information about the ongoing droxidopa aka L-DOPS, trial including how to volunteer, can be found here.)

Click here to donate.

Put on your red shoes and dance the blues!