Getting through

Just get through it.

That's what I thought on Wednesday. And what I thought last week. And yesterday. And likely next week. Just get through it. Expect the payback. The recovery. The preparation for the next step. The next event. The next appointment. Get through that. Then payback, then....

I'm stuck in the loop.

The calm time. The inbetween time. The time where I can just sit and breathe. The time where I can process things. Or fart around doing nothing. Or everything. Doing something I want. Without worry that it'll be too much and I wont be recovered and prepared enough for the next event. That time is missing.

Chronic illness is a fine balancing act. And I'm fumbling.

My recovery time is longer. My preparations often interrupted by flares of symptoms that seemingly have no rhyme or reason.

A few of my doctors have mentioned that I have the crappy honour of becoming a complex chronic patient where my body is so off kilter it just keeps throwing things in for kicks. Those kicks aren't huge but enough to make life that little bit harder. That drain just a little bit more of my already reduced energy. The pain that radiates from my pacemaker pocket and wakes me, stabbing into my chest and down into my breast one of the latest. A rare complication. More common in women but rare all the same. Like my surel nerve biopsy, the nerves that were cut so my heart could keep beating, howl their displeasure and rage against my body. Something else to put in the "live with it" pile. Pain everlasting, poorly managed, ever increasing, and ever exhausting.

The concern face as my heart throws up a new problem. An unexpected problem. More tests. More fiddling. More uncertainty.

And so the breathing space that was once there between events and flares is merging. My resources fewer. My prioritising even more ruthless. There are things that must be done and the rest doesn't even get consideration.

The emails pile up, just like the messages.

Phone calls not returned.

Appointments are scrutinised and prioritised.

Which body part is most in need of tending?

Which appointment will give me the most bang for my buck?

And outside that, life.

Children, husbands, families and households.

The needs that cannot be abdicated. The needs that trump my own. The needs that I am also fumbling.

In the midst of it all an appointment that is easy. So easy it doesn't register until after. When I'm sitting in the car and realise that it was both fruitful and pleasant. There was no antagonism. No fight to get what I needed. I sat with a collection of referrals, for specialists and tests. Break through meds, and understanding. I was too busy getting through, so used to expecting a fight, that I fail to register the gift that is a doctor who gets it.

I sometimes wonder what it must be like for a doctor to be landed a patient like me. Complex and weird. Only there when the going gets bad. Only there when the problem is a mess. So busy getting through it that I wait too long. So busy getting through it, so used to expecting to beg and argue, I didn't give her the thanks she deserved.

I need to focus again. To not just get through. To move beyond ruthless existence. I think I might use up some of my precious resources for a quick note of thanks. A few words to say thank you, I noticed, it meant something. It was an easy spot in the midst of hard.

And then I'll start prioritising again. Shave off this need, cut off that. Distill it all and keep saying No, until it all becomes manageable again.

Because it will. It always does. And I'll rejoice once more in the breath-filled moments.

Michelle

I've been listening to a lot of Sara Watkins of late and this song in particular. Short and simple with perfect lyrics. (I've written about it before here  when I needed a reminder that I always drag myself back.)

Independence, wherefore art thou?

Today someone is coming to the house.

To take me out.

A stranger.

A stranger is coming to take me out.

For an outing.

An outing.

I don't know what I think about it.

Well I do.

I also wonder how many expletives it takes to be kicked off Google? I think I could do it.

It feels like someone is reaching deep down into all that is me, and ripping it to shreds. Big chunks of my being, pulled out to rest in bloody hands.  A tad melodramatic I know. But it does.



I'm not comfortable with any part of it. I feel my stomach churning as I type. I can hear the "But Michelles...." already. And honestly, the "But Michelle...." folk can stick it. Two days ago I turned 42 and today someone is coming to take me on an outing.

Because I can't go out alone.

Because I am reliant on others to leave my house.

Because it's just another marker for the level of shit my body is immersed in.

Because I'm angry and shitty and tired.

Because.

I can go anywhere I like. The local shopping center keeps being brought up. Because heading to Target with a stranger is up there with internal exams, on the fun scale.

And small talk. Small talk with a stranger. Might as well break out the speculum.

I want to go to the gallery. I don't want to talk. I don't want to interact. I want to look at art at my own pace.

I want to not go arse up with a stranger and have to deal with the crap that goes with it.

I want to go and not have to explain why I'm in the chair.

I want to pretend that I'm there alone. I want to pretend I am still independent.

But a stranger is coming to take me out on an outing, because I can't do it alone.

And I am reminded

                                just how fucked my body is.

Michelle

42: "It's here" (Must be said in the voice of the creepy little girl from Poltergeist.)

So 42 is here and I am none the wiser. I would even venture to say I am even less the wiser. Which isn't all that surprising. Damn you Douglas Adams, you lied. I slouch here in bed, 42, and still no clue about life, the universe and everything. Admittedly, I should have known. 42 was also Mulder's apartment number and while he was convinced that The Truth is Out There, he really never found a satisfactory answer. And if Mulder can go through 9 seasons and a couple of movies with Scully, and still be in the dark, what hope does a middle-aged woman with purple hair and coffee-stained pjs (it's been one of those mornings) have? And while we're at it, and I was procrastinating before writing by looking up pictures of Mulder, I came across this picture and realised that Tony Abbott has ruined the red speedo forever. I couldn't even look without a little bit of sick rising up to the back of my throat. Worst birthday moment EVER. And now you can't unsee that either. You're welcome. 

Answers to questions I didn't even know I was asking that became clear today:

• Nasonex squirted under your armpits rather than in your nostril does little for your allergies. Although I'm pretty sure my armpits will be able to tackle rogue dust mites in a single bound while my nostrils continue to weep and offer up their lunch money.

• A casually hung hand towel is not a substitute for a sturdily attached handrail when you are flailing about as you head downward. Terry toweling works well to cover your face and dab the drool from your lax mouth. Pro tip: check for errant hairs (yours, your husband's, or the dog's) and the location of that one miscellaneous slightly damp spot, before use.

• When you are walking to the bathroom with an empty glass in one hand and your Florinef in the other don't put the pills in your mouth and stand baffled as they stick to your tongue rather than going down. Don't then try to drink from the empty glass, or fill and rinse the glass while you are gagging on the pills, still surprised that they are not going down and you still have an empty glass.

• When apologising for slurred speech whilst on the phone to a local medical centre, the slurring does not suddenly evaporate. It is all just a continuation of slurring. Slurring overly articulated words, is still slurring. Though I have a feeling a frustrated half-whispered F bomb may be the only word that becomes crystal clear. Even should the phone be held away from the mouth.

I'm pretty sure that those are the bargain bin versions of answers to life, the universe, and everything. You'd find them tucked down at the bottom of the bin next to a Kenny G cassette, a battered Troll Doll and a dog-eared copy of The Secret. But hey, that's the kind birthday it is. I still feel like crap but still not sure that I feel 42.

So while I lay here and contemplate my navel and my past 42 years I'll repeat my birthday wishes from my Almost 42 post.

I have two birthday wishes. 

1) If you know someone living with chronic illness give them a hug and let them know you care. Because this shit is hard.

2) If you are living with chronic illness, know you are a superhero. Because this shit is hard.

Bring on the birthday cake. 

Michelle

A funky birthday tune.

Maybe someday this pain will be useful.

Little sunbeam after the storm.

A photo posted by Michelle Roger (@michelle_roger) on Dec 29, 2014 at 12:39am PST

A while back I found myself running (okay lurching and stumbling, grabbing walls and chairs) into my bedroom to grab a post it and a pencil. I had an overwhelming need to write down a quick quote:

"Maybe someday this pain will be useful"

It comes from the video below by Jennifer Pastiloff (I also like her "I will not hide my shit nor will I hide my magnificence." No one should ever have to hide themselves.) A fellow blogger and all round awesome person Chris from pixie.c.d. had shared it on her timeline. In my morning pre-coffee haze I slumped on the couch and pressed play. I've never heard of Jennifer Pastiloff before, and she's a little full on for my laid back Aussie sensibilities, but there were moments in the video where I thought, "sing it sister." 

Maybe someday this pain will be useful.

I'm not one for the woo woo inspirational stuff. The vast majority of which I find superficial, unattainable, nails on a chalkboard. (This of course could partly be attributed to the sheer volume of perky memes I've been sent since I became ill. Just so folk know "Healthy mind, healthy body" is not the kind of meme you should send someone with a progressive genetic condition. You may be sent a sarcastic naked mole rat pic or something similar if you do.) But this one line stood out as I was watching.

What if everything I go through, all the shit, all the pain and the fear and the disappointment and frustration, all of it, is useful?

I don't go in for the everything has meaning line. Or that everything happens for a reason. Sometimes shit happens. No rhyme. No reason. It just happens. But I do sometimes think we can choose to find a use for what happens. And in a sense I think this is where blogging and writing fit.

While I would gladly have a do over for the last 8 nearly 9 years, or take a miracle cure like that! There has been good in there. I have met some of the most amazing people I now call friend thanks to this defunct body of mine. In particular, I met my best friend Kerri for who I will forever be grateful. But beyond that, in expressing my journey (there has to be a better word, the whole journey has been coopted by a lot of woo woo, but its all I can think of at this hour) it has given a voice and safe space to others.

In sharing the changes with my body and the way I feel about it warts and all, it has allowed others to express their own experiences, or simply feel not alone. The power of not feeling alone is incredible. It normalises an incredibly abnormal experience. It's a soothing balm for the spirit and relieves a burden whose bulk you often don't realise until it is gone.

In sharing the hurts, tears and doubts it lets others also express their own pain. A pain that is often hidden behind the permanently perky mind set that says you must always put on a brave face. And should you dare to say "it's hard" there is always someone who'll pipe up with a quick "well at least it's not...." or "it could be worse" to silence the speaker lest they make them feel uncomfortable.

In sharing the small victories and the laughs it lets others know that they too can have those victories and joys. In being ridiculous in the face of illness it can give others permission to also be ridiculous (a necessity to survive this life.)

All of this pain, all of the vomit and the medications and procedures and frustrations are worth it if in the sharing it can help one other person in some corner of the world.

Maybe someday this pain will be useful.

Maybe it already is.

Michelle

I will not hide my shit nor will I hide my magnificence. What are you hiding about yourself? Are you willing to be vulnerable? Quite often it's the things we try and hide that draw people to us. Are you afraid of "being found out"? Post all your thoughts below and feel free to share.I love you. You're enough.Xo www.jenniferpastiloff.com
Posted by Jennifer Pastiloff on Friday, 17 April 2015

Not quite 42 things I've learned over the last not quite 42 years.

(source)

One week from today I turn 42. I am hoping that I'll find the answer to life the universe and everything. If not, well I'm not sure what I'll do. Probably sit apathetically on my couch and pluck salty chip crumbs off my dressing gown like most other days.

42 seemed so old to my child's mind as I sat watching episodes of Hitch Hikers Guide to the Galaxy on Mum's tiny portable black and white. I would plonk myself on the end of her lace covered bed and sit, glued to the TV, chomping on my plate of dry Weet-bix, topped with a thick layer of margarine and huge globs of glistening strawberry jam, taking in lessons about the importance of always having a towel. 42 seemed the fare of science fiction, not something I would ever apply to myself.

I don't feel 42, or almost 42, whatever 42 feels like. My body feels what I imagine 80 feels like (until I see a shot from the Masters Games and realise that I wish I was 80.) In my head I am still stuck in my late teens and early 20's. I still believe (You Gotta) Fight For Your Right (To Party!) and think The Only Way is Up. And that there is nothing wrong with being Too Funky. I still want to party like it's 1999 and I can't even think of 42 things I've learnt since I sat in Mum's bedroom in our old farmhouse all those years ago. I can't be bothered with lists but feel I should probably make the effort to impart some of my 42 years of knowledge. So here goes.

• No one knows what they are doing. Some are good at hiding that fact, but most of us are just winging it.
• If you want to dye your hair blue, do it. Don't wait. Don't worry what anyone else thinks. 
• There will always be someone telling you what you are doing, like, or think, is wrong. For the most part those people are twats and don't deserve your time. There are a couple in amongst the yammering crowd who do deserve your time. Spotting those people is the big challenge. Because if it's you acting like a twat, you want someone to set you straight.
• You will have doubts. Big buckets of doubts. Recognise them. Accept them. Challenge them. Like most people telling you that you are doing life wrong, those doubts you are carrying around are arseholes. Don't let arseholes run your life.
• Don't be a dick. If you are a dick, apologise. 
• Screw trends. Wear what you want. If it makes you happy wear it. Confidence shines far more than squishing into the latest trend in jeans. 
• If you believe in something don't be afraid to have a say. Fight for the good. Shout it from the roof tops. People will shout back, but if you believe passionately it's worth the effort.
• If an opportunity comes your way take it. You can lie awake at night worrying about it afterwards, or worry about peeing in your pants as you roll up to the stage, but odds are you can do it. Or stress will wipe the memory from your mind so it is all a blur and you'll agree to the next opportunity to speak in public. 
• Breathe.
• Give yourself the compassion you 'd give others.
• Eat the chocolate. 
• Life sucks at times and it's okay to say so.
• Life is amazing and beautiful at times and it's okay to enjoy it.
• Dig your toes in the earth. Or the sand, or the water. 
• Always challenge your beliefs. If they are worthy they'll stand the test. If not, you have new knowledge. 
• Change is good. Same old same old leads to stagnation.
• Different isn't a bad word. Embrace the infinite variety of life. You don't have to want to live your life the same way as someone else, to respect and accept their choices. The world opens up into a beautiful place when you yourself are open.
• The world will not end because you don't eat the kale and think green smoothies look like the Slime in a Can, you used to get in your showbags when you were a kid. It is okay to say you would rather eat the slime, or a Tim Tam, instead. 
• You have more to offer the world than beauty. Beauty is a construct. An ever changing and ever limiting construct. You can be intelligent, strong, kind, brave, or all kinds of things other than beautiful. Open up a dictionary and find ALL your words. 
• Similarly, happy. We have a happiness industry these days and yet happiness seems more elusive than ever for many. Happy is a basic word to explain a complicated concept. My happy isn't your happy. And that's okay. It's also okay to NOT be happy sometimes. We have a variety of emotions, use them. 
• Laugh. 
• Fart jokes are always funny.
• Read. Read a lot. Read crap as well as the classics. Just read. 
• Watch bad TV. If Judge Judy floats you boat, watch. If you like your Housewives, watch them. I would never have learnt about the Smize, if not for watching America's Next Top Model. 
• Hate is a blight on the world. We are so busy hating others we cannot see our own flaws. When we hate, we dehumanise. And when we dehumanise it makes us capable of acts and thoughts we would never normally entertain. Hate serves no one and minimizes us all.
• You will make mistakes. Lots of mistakes.  
• You will have the opportunity to do good. Big and small good. Take those opportunities. Not for any personal reward. Just because it adds to the communal ether.
• Religious or political affiliations do not make you a good person. Actions are what matter. Especially how you act towards those who are vulnerable, different, or can do nothing for you in return.
• Wear make up or don't wear make up. Neither decision makes you a better or worse person. Same with tattoos and hairstyles and peircings and.....
• You are not your past. 
• Someone who holds your hand as you sleep, is worth their weight in gold. 
• Sometimes you just need to do something forbidden even if you pay for it later. I'm talking a forbidden glass of wine, not bank robbery. Rebellion, even small rebellion, is good for the soul. 
• Politicians suck.
• Media reporting sucks.
• Media reporting of politics sucks.
• Don't believe everything you see on TV or read on the internet. Be skeptical. 
• There are far to many hate and fear mongers in the world. Be a do gooder. I'm not sure when doing good became a bad thing, but screw that. Wear that do gooder label with pride.
• Love, Kindness and Hope should be sprinkled liberally. 
• When shit happens you'll think you wont make it through. You will. It just doesn't feel like it at the time. But you will.
• You are worth it. 
• It's okay to change your mind. When you learn better, do better. 
• Life is full of possibility.
• Dog cuddles are smelly and wonderful. 
• Sing badly and sing often.
• Singing along to Vogue and doing all the moves, is a great panacea on the bad days.
• I still have no clue what I'm doing.

Okay so that was longer than I expected. There's probably more. Maybe even 42. But I need to pee and there are also the meds I just realised I forgot to take. 

No doubt after next Monday I'll still have no clue about life, the universe or everything. I'll still be muddling through. And that's okay. Muddling has gotten me this far. It'll do for a while yet.

I have two birthday wishes.

1) If you know someone living with chronic illness give them a hug and let them know you care. Because this shit is hard.

2) If you are living with chronic illness, know you are a superhero. Because this shit is hard.

(source)

Michelle

And because in my head I'll always be that teenager singing into her hairbrush in front of her cassette recorder, I give you one of my all time favourite 80's songs, Don't Leave Me This Way by The Communards (1986) with the amazing vocals of Jimmy Somerville (of Bronski Beat fame.)