Favourite Blogs: Day 14 #NHBPM

Oh dear lord it's late here in Australia. Way past my bedtime and definitely past my brain time. I'm taking one of the alternative topics for Day 14. This time

My Favourite Blogs.

I do read a lot of other chronic illness and health blogs. Some I have read for many years now. Blogging friends from around the world who's stories and lives I love to catch up on.

But when I think of the blogs that are my go to read on on a Sunday morning or when I am stuck in bed, most have nothing to do with illness. Times like that I need to escape my world and embrace beautiful things and humour.

Vintage Fashion. 

Chronically Vintage: Lovely Canadian blogger Jessica is a fellow patient, but more importantly she has as amazing vintage blog which I adore. Between her fantastic outfits and her lovely writing, her blog is always a pleasure. Loving her vintage recipes. Although the ingredients are slightly different thanks to the whole international difference, they always remind me of the way my grandmother used to cook and a Country Women's Association cookbook I have with dishes from the 40's. Check out this amazing post she did on wearing vintage clothing when chronically ill or you have special needs. Just brilliant. I think that was the first post that sent me her way (via a recommendation from Brittany at Va Voom Vintage: see below) and I've been reading ever since.

Esme and the Laneway: I've been reading local Australian blogger Marianne's blog for a long time now. Her blog is filled with beautiful pictures and it really is a visual feast. Her combination of vintage fashion with modern pieces like her wedge heels are always perfect and she, like her blog, always look gorgeous. I was lucky enough to win a prize on her blog earlier this year and took a stab at doing my own fashion post and she was kind enough not to laugh, so she'll always be a favourite.

Super Kawaii Mama: I was lucky enough to meet Candice De Ville this year when Mr Grumpy and the boys brought me a ticket to her class at a local vintage show. Candice is another Melbourne girl and I have followed her blog for a few years now. She has an amazing vintage style and her knowledge about the genre is phenomenal. Her course was fantastic and if you ever have a chance to go to one I'd definitely recommend it. I was just a tad excited to meet her and even more excited that I managed to get a vintage fan girl picture with her.

Va Voom Vintage: Brittany is an American blogger. Her blog is a fantastic educational tool as well as vintage treasure. If you want to know about how to tell true Bakelite (and I do as I love Bakelite jewellery) from reproduction or how to care for you vintage garments, she's your girl. I really love that once a week she dedicates a post to a style icon (this week Grace Kelley).

Fashion: 

Lady Melbourne: I've followed Phoebe's blog for years. Pretty much since I ever started reading blogs. Phoebe has a background in fashion and journalism and has become a style icon here in Australia. What first attracted me to her blog was her insight into local Melbourne fashion introducing me to a host of previously unknown designers. She's also a really lovely person as I discovered when I was lucky to win a shopping spree with her last year. I love her style, where she flows from vintage op shop pieces to designer wears, to create a style that is uniquely hers.

Cecylia.com: lovely local Melbournian Cecylia is vet by day fashionista by, well day and night. Like Phoebe above her style is her own and it's fabulous. Again she mixes a range of pieces that I would never have thought to put together and makes it work. Cecylia like all the other fashion bloggers I have mentioned is lovely, and I think that comes through in all the blogs and probably why she and the others are on my favourites list.

Design Inspiration.

Poppy Talk: I have no idea how to really categorise this Canadian blog. All I know is that I love all the images and styles they show. It has been a source of great inspiration for how I want to style my home and future craft projects. Well worth a look.

Photography.

Dakota D: I stumbled across Dakota's photography blog last year and have been reading ever since. It is filled with beautiful photos from around the world, from his time in Europe and back to his native New Zealand. It is simply beautiful and a real delight to read through.

Humour with added extras.

BugginWord: I have read Elly's blog for years now. She is lovely, she is funny, she likes show tunes, ukeleles and glittery unicorns. She is often irreverent and NSFW but she is also touching and lovely. She also sang me a ukelele song (below) when I was sick in hospital and sent me Kenneth Kazoo all the way from the US so I'll always love her. She's one of the few people I can honestly say I would love to sit and have a coffee (or a wine or three) with some time, you know if I'm ever in Jersey or she happens to be in The Land Down Under.

Pajamas and Coffee: I've been reading Mary since way back when. It's always strange to find someone on the other side of the world with a sense of humour similar to your own. Self-deprecating, oversharing (you should read about the run in between her lady bits and a jelly fish) and irreverant I kinda like that.

Alfred Lives Here: Brahm is officially my favourite Canadian, dog loving, gay blogger. Whether it's pop culture, gay rights or pictures of Alfie the super cute canine you can't go past Alfred Lives Here. Again I've been reading Brahm's blog for years (I think I may have found him through Pajamas and Coffee from memory). Plus he's a great guy who understands my own love of my four footed family members.

So there you go a few of my favourite blogs. In all cases it is not just the blogs but their owners that make them special. They are a great bunch of people.

Cheers
Michelle :)

Taboo:Day 13 #NHBPM

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Regular readers know that very little is taboo on this blog. I've written about the less savoury symptoms of Dysautonomia such as my gastrointestinal issues on many occasions. I've also written about a lot of the dark thoughts and dark times when it's all too much. I'm pretty much an open book. And every time I open up those places I find a whole community of people who have also felt the same way at some point, but thought that they were the only ones.

Taboos don't help us. Taboos lead to silence and silence means we feel alone. Being frightened or too embarrassed, to express how we feel, or to share our experiences leads to an unnecessary burden. One which we could avoid or minimise through openness. Chronic illness is hard and not just in the physical sense. The emotional aspects of a life of chronic pain or chronic ill health are frequently underestimated. Medical practitioners rarely discuss this aspect with their patients. And patients are in turn often reluctant to discuss it with their doctors.

We live in a society where stigmas still hold strong to any expression of emotional stress. I have written a lot about the mental health issues of living with a chronic illness, both as a natural response to living with a difficult diagnosis, and as a comorbid psychiatric diagnosis. Stress and chronic illness go hand in hand. From the fear and confusion when symptoms first present, to the often complex and disheartening process of diagnosis, to the reaction of others to illness that does not end with a cure, to simply adjusting to living with all the changes such diagnoses can bring, stress is par for the course for many.

Yet the pervasive message we get from society is that to admit such a normal stress response is a sign of weakness. And so we hide it. Western culture has developed into one where we are told to feel happy all the time. You see this in the every day reactions of those around us. We find the courage to say things are difficult and we are instantly met with a silencing platitude. "You just need to have a positive attitude', "You don't get more than you can handle", "Others have it worse" "Well at least it's not...." "You can't...." "You shouldn't....." All of which ends with a patient shutting down and hiding what they feel. This of course is then followed with the inevitable "What's wrong with me?" "Why can't I just feel happy?" "I shouldn't feel this way" and what was a normal reaction to a stressful situation transforms to an emotional burden.

How can you work through your feelings when you are made to feel bad or weak by simply experiencing them? Only through open discussion can we change this. Chronic illness is enough of a burden to deal with without adding the emotional burden of silence.

Grief and adjustment must be addressed. These aspects of a patient's experience should not be an after thought. It is known that patient attitude impacts on adherence to treatments. A patients perspective and emotional reactions will also impact greatly on how they deal with and interpret their symptoms. But often it is only at the point of crisis eg a patient ends up in hospital or a marriage ends, that this is addressed. And yet that added burden, particularly the degree of burden could be alleviated through open communication.

There is no shame in saying things are hard. You can't work through what you don't acknowledge. It takes courage to say that it's not okay sometimes, that you're not coping, that you want to yell at the next  well meaning person who wants to give you advice or tells you the sun will come up tomorrow, that some days you just want to pout or shout, or just be alone or irrational, or be a complete cow, or all the other things that go through our minds.

None of us are truly alone if we are willing to share our stories, warts and all.

And for that reason I'll keep writing this blog. I'll keep sharing the good and the bad. The crazy thoughts and the unglamourous side of this illness. If that means that even one person feels less alone or less crazy then it'll make it all worthwhile.

I'll keep chipping away at the silence and dispelling the taboo, because there is no other choice.

Cheers
Michelle :)

I love the line in this song, "I have a face I cannot show", it reminds me of all the times I've had to stuff down what I was feeling.


Day I: Why do I write about my health.
Day 2: Find a quote and use it as inspiration.
Day 3: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 
Day 6: And I've done my back, because it's not like I had anything else going on.
Day 7: Setbacks. Vlog time.
Day 8: A letter to my health.
Day 9: No Blogging Day.
Day 10: Taking a little Time.
Day 11: Strength
Day 12: Chronically Blogging Australia

Chronically Blogging Australia: Day 12 #NHBPM

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Holy crap it's that time again, Day 12 of NHBPM. You'd think by now this would no longer be a surprise to me but nope. There's a reason I was dubbed Rusty Hoe by my family*. Like yesterday, I am breaking the rules and going off script. But it is for a good reason.

After chatting with a couple of fellow Australian bloggers yesterday about the lack of a central group dedicated to bloggers who write about their personal journey with chronic illness or disability (eg there are groups for food bloggers, fashion bloggers, parent bloggers etc). As such, we were spurred into action.

And Chronically Blogging Australians was born.

"A group for Australian bloggers with chronic illnesses and disabilities. The network is about sharing blogs, tips, resources and doing some challenges, rather than focusing on diagnoses/treatments/cures for illnesses and disabilities"

Myself, Carly  and Hayley are moderators. There is a both a FB page and group (currently a closed group) with plans for further expansion into other areas of social media and local events. Bear with us whilst we get things moving.

So this is a call for all the Australian's blogging away about their personal chronic illness or disability. Come and join us.

Cheers
Michelle :)

* "I was named Rusty Hoe by my delightful family.  One night around the dinner table, we were discussing how I had devolved from the brains of the family to not the sharpest tool in the shed.  Mr Grumpy, decided that not only was I not the sharpest tool in the shed, but I was the rusty hoe left out the back of the shed.  Whilst it took Mr Grumpy a while to catch on to what he had said, the monkey boys burst into fits of laughter at their father's faux pas.  What will be the salient moment my children will recall from their youth?  That their father called heir mother a 'hoe' at the dinner table."

Day I: Why do I write about my health.
Day 2: Find a quote and use it as inspiration.
Day 3: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 
Day 6: And I've done my back, because it's not like I had anything else going on.
Day 7: Setbacks. Vlog time.
Day 8: A letter to my health.
Day 9: No Blogging Day.
Day 10: Taking a little Time.
Day 11: Strength

Strength: Day 11 #NHBPM

                                                                                            Source: gubernatrix.co.uk via Baby on Pinterest

For the past 11 days I have not only been typing away furiously (or incoherently, depending on my pain and brain fog levels) but also reading till my eyes hurt. This blogging challenge has lead me to discover a raft of other blogs on a variety of conditions. Some are written by patients, others by their family or carers. Some are humorous. Some poignant. Some leave me in tears and other educate me about disorders with which I have little to no experience. But throughout all of them the overriding theme that jumps out at me is Strength.

People with chronic illness and those who care for them, are strong. Even when times get tough they pick themselves up and carry on. They share their voice and intentionally or unintentionally share their strength with those who read. For every person who reads that post a little of their strength rubs off. It transfers to the reader and helps them carry on. It tells them they are not alone. That what they face, even if a completely different diagnosis or life circumstance, they too can make it through. Because we all share the same fears, the same thoughts. Specific details may vary but the shared experience binds us. 

The shared voice of this event has been raw and honest. Every person who has shared a little of their world has claimed their voice and all those collective voices roar. 

There is a Japanese proverb that I came across the other day on Twitter

Fall seven times. Stand up eight.

At the time I thought it was the perfect Dysautonomia proverb. Apt literally and figuratively. But after reading all these different voices I think it is apt for all those who share the path of chronic illness. Illness isn't filled with rainbows and unicorns. It's not permanently perky, nor permanently pessimistic. It's a roller coaster that can throw new and unpleasant obstacles in your path at any time. It can be scary and painful. It can challenge who you are and how you relate to the world around you. But there is also light and joy and laughter. It's choosing to accept and manage the reality as well as knowing that life goes on and you can pick yourself up, dust yourself off and smile. It's also daring to share that truth with the world.

That is strength. It's dirty. It's gritty. It's raw and it's honest. And it's beautiful to behold.

Cheers

Michelle :)

Love the lyrics to this Foo Fighters song. Sometimes I'm in the mood for this acoustic version but I also love to play the belt it out rock version.

Taking a little time: Day 10 #NHBPM

Well despite my best efforts I took one of my two blog free days yesterday. It's a fine line between pushing through and coming a cropper. Yesterday I was well on my way to face planting or at the very least sobbing in a mental corner somewhere, so I decided it was time to take a little time, and simply be kind to myself.

For Day 10 I've taken one of the alternate topics.

How you take time for yourself

You often here the term pacing in the world of chronic illness. I used it often back when I was on the opposite side of the desk. Working in rehab it's a central tenet of practice. Mostly it's in relation to physical burnout. Walking the fine line between pushing a patient to exercise just that little bit more to ensure progress whilst also being aware that if you push that little bit too far the post-exertional malaise will mean they go backwards. But pacing isn't just physical it's mental and emotional too. And some days you just need to sit back and breathe for a while. I say this in full knowledge that my stubbornness means the whole theory of pacing goes out the window on a regular basis. If I have a good day I always try and pack in a weeks worth of activity into those 24hrs. It's so rare I want to make the most of it. Which of course leads to a huge body backlash and long recovery phase. Between the professional theory and my own history of the do to much/crash you'd think I know better. But no. Stubbornness is the winner in that game.

But yesterday I decided to grasp that fleeting moment of sanity and cry uncle. Time to take time. Thanks to my current back issues yesterday's breather was filled with mindless TV watching. Sometimes there is nothing better than sitting back and losing yourself in some trash TV or getting your geek on watching yet another scifi/fantasy program. But normally if I want some me time I get crafty or I garden.

There is nothing better than creating. From the idea stage, to the actual crafting itself, I love it. But when you finally finish a project that feeling is really special. My body is not compliant with much these days. Many of the things I would love to do are out of my reach and it's easy to get caught up in the feelings of hopelessness and helplessness. But whether it's painting, potting up plants, making soft toys for my nieces or repurposing a piece of furniture. Every time I complete a project, no matter how small, there is a real sense of achievement. And in many ways it's a case of giving my body and my health a big middle finger.

Small and therefore achievable projects are what I do for the most part. But occasionally I pick a larger project and do a little bit at a time, for a long time.

I found this old wardrobe on the side of the road during one of our twice a year Hard Waste days. This is when our council allows us to put out larger items for disposal alongside our regular garbage. I like to think of it as better than Christmas. I used to love nothing more than driving around picking up various bits and pieces (I was too unwell this year so my best friend went around for me, texting me pictures of her finds, now that's a true friend!). So much that others think of as junk, I see as potential. I see a piece and instantly know what I'll do with it.

My eldest son and his mate carried it home for me as it was too big for the car. It even had the original keys.  From the first moment I saw it I knew it was my new kitchen cabinet. Don't ask me why but I did.

I sanded my heart out. Mind you that sanding took months. I have Muppet arms with no strength. Not too mention that pesky standing and putting my arms up above my heart. Never good when you have Dysautonomia. But after months of stopping and starting and much in between resting, I managed to get off the majority of that old shellac.

Mr Grumpy, his Dad and brother reused old doors and other bits and pieces to put in some shelves for me.

 Then I ordered some paper online.

And painted. And painted. And painted.

And papered the door panels. (This involved much in the way of swearing as the highly fibrous paper shrank and bubbled when it hit the glue). Plus a coat or three of varnish to protect the paper.

Voila! My new kitchen cabinet.

In this case it took me months and months to finish. But it felt so good when I attached the final door. We use it everyday and everyday it makes me smile. Because for once I finished something, despite all the obstacles my body put in the way. It took me forever and a day but it was and is so rewarding. Every time I finish a project. Whether it is simply managing to pot up some plants, paint a pot, decorate a chair (one of my favourite things to collect from Hard Waste) or even make Christmas decorations from bits in my yard and what I had in the house, it revives me in a way I can't really explain.

Topped with my green flour tins that I found on ebay and love.

I know other chronic crafters who knit or crochet, do origami or draw. A whole range of different hobbies and talents. For each of us it is the same thing. The joy of creation. The joy of holding the finished product and saying "I did that", despite all the difficulties we face, all the obstacles our bodies throw at us. That sense of satisfaction and pride. And I much prefer putting what little energy I have into crafting and creating than vacuuming or stressing about my health. I am happy when the exhaustion or symptom increase is due to craft and not because I went grocery shopping or am pushing myself to keep my house clean. It all helps to heal your spirit one little project at a time.

Cheers
Michelle :)


Day I: Why do I write about my health.
Day 2: Find a quote and use it as inspiration.
Day 3: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 
Day 6: And I've done my back, because it's not like I had anything else going on.
Day 7: Setbacks. Vlog time.
Day 8: A letter to my health.


Today's musical interlude comes from Crafting Playlist of which No 10 just happens to be Kate Bush's fabulous classic Babooshka.

Dear Bob and co: Day 8 #NHBPM

Well I'm sort of back, but not really. I have managed to make it from my bed to the couch with a mixture of swearing, moaning and old man shuffling, and that's a definite improvement. I have to sit like I have pole inserted where the sun don't shine and still need to bellow for my minions to supply me with sustenance and pain meds, but all in all I'm taking it as a win. Plus I've managed seven days of blogging in a row and I'm damned if I'll let this stupid body of mine get in the way of sharing Day 8 of my crazy with the world.

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Topic: Write a letter to your health.

Dear Bob (Dysautonomia) and Jeff (my mutant jugular) and my recalcitrant digestive system and the rest of the gang,

What can I say guys? It's been fun? Nope that's not it. It's been a blast? Well maybe with you digestive system, given how my innards have been the last year and a half. Who knew doing a normal Number 2 some time this century would be added to my bucket list? Certainly not me. But that's as good as it gets for those challenged in the regular poo department.

And you Jeff, well you just never know when to quit. You've embraced your mutant side with gusto and seen reluctant to move out. Like a damn cockroach, I'm pretty sure you'll survive the nuclear apocalypse So here's hoping the Mayans were right and/or the zombies are coming. That way there's a chance one of the walking dead will give me an atomic hickey and rip you right out.

But you Bob, well you were my first, so you'll always be special. You and I go way back to that first collapse at work. That delightful trip to the ER where I was asked 28 times if I was pregnant. Apparently they don't teach the ER doctors what the word 'hysterectomy' means any more. You'd think telling them I was womb-challenged might have been a giveaway, but no. You lead me to my first fun time with IV fluids and being tossed out unable to walk, because they couldn't work out was wrong. Good times. I feel like right about now I should break out in a heart-felt rendition of Memory. But no that's right I'm banned from that now thanks to you. Belt out a tune and my pulse pressure disappears and I tend to fall over, complete with dramatic grasping of chest. It's been one rip snorter of a party with you. Did you know we are coming up to seven years together? No? Typical. I guess you can blame it on the brain fog, though I'd prefer to blame it on the boogie. Seems the traditional gift is copper. What copper thing can I get you? A 7.62mm rimless NATO round, sounds like a promising choice.

Frankly I'm over you and your dodgy mates, Bob. I think it's time we broke up and went our separate ways. I've never really been into the Big Love thing anyway, just way to much work. You and all your brother husbands can pack your bags. If it's all the same with you, I really think it's time for all of you to just bugger off. It's definitely not me, it's you. It's very personal. I don't want to be friends. I want to be foot loose and fancy free. Preferably on a beach somewhere, with hot cabana boys bringing we margaritas with tiny umbrellas, oh and foot massages and....

So see you later fellas.
Hit the road Jack.....and Jeff and Guts and Bob and all the rest.
And don't you come back.
No more. No more. No more.

Michelle :)


Day I: Why do I write about my health.
Day 2: Find a quote and use it as inspiration.
Day 3: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 
Day 6: And I've done my back, because it's not like I had anything else going on.
Day 7: Setbacks. Vlog time.

Considering all the male names I use for my disorders I thought this Oz classic by the Divinyls, was perfect.

Setbacks: Day 7 #NHBPM

Well it's Day 7 of NHBPM. Despite a back that still refuses to play ball I am attempting to keep chugging along. But not with a blog, because that would take brain cells and coordination. Things that are in low supply today. Today I give you a vlog.

Be amazed at the crazy woman on the video with little brain power but a lot of stubbornness. 

Can't sit up? That's no impediment to vlogging. 

Pain shooting down your butt cheek? Harden up Princess. 

Can't breathe. Only a wuss would stop her vlog to breathe.

Concentration and coherence no longer in residence? Why that's the perfect time to vlog.

I give you Setbacks (all puns intended).

Michelle :)


Day I: Why do I write about my health.
Day II: Find a quote and use it as inspiration.
Day III: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 
Day 6: And I've done my back, because it's not like I had anything else going on.

Love K D Lang, and the title of  this just seems the perfect choice.

And I've done my back, because I had nothing else going on: Day 6 NHBPM

Day 6: News-style post: Warning this post is written whilst on the good pain meds. No coherency, grammar or spelling guaranteed. Stubbornness means I'm not going to let a little thing like being flat on my back and whimpering each time I move, get in the way of NHBPM. Huzzah!

STOP THE PRESS!!!!! 

MICHELLE HAS DONE HER BACK. 

YET. 

AGAIN. 

(le sigh)

Dear lord, that's not much of a news story but it's my crappy story. You see I collect chronic diseases/disorders like other people collect salt and pepper shakers. Because one is just never enough.

I've been doing my back since my early 30's. One moment I was fine. The next I was in the middle of my pilates class and heard a sound that no one should ever hear from their back. 24hrs and 4 popped discs later I was told that I had the back of an 80 year-old-woman, otherwise known as Degenerative Disc Disease. Just what every girl wants to hear. A haphazard mix of physio, pain meds, hydrotherapy and crying into my Cornflakes got me through those months, but unfortunately did little to reverse the underlying condition.

Since that time I have popped multiple discs, suffered through sciatic pain more times than I can count, and been felt up by way too many physios. I had to laugh that my last MRI showed a bulging thoracic disc, but that was inconsequential according to the Radiologist. The near constant pain radiating from that same spot would lead me to disagree with his finding of inconsequential!

Makes me want to attempt a Sheldon Cooperesque head explodion on that particular Radiologist.

Today I am lying in bed flat on my back praying that the meds will at least take the edge off the pain, although all my past experience tells me it wont. Yet again I just have to wait it out. Until the pain becomes bearable and I can start the usual round of back exercises. You see adequate pain meds for discs that simply refuse to stay put and enjoy jumping on and crushing the nerves leaving your spinal cord, are pretty much non-existent. Nerve pain is a bitch. Be it the knife in your back or the molten lava of your feet. Or the near constant tasering and cattle prodding of various parts of my body. I've yet to find an adequate method of relief.

I live in pain daily. I have for years. I don't talk about it much as it's just one more thing on the list. I can't really recall a time when I wasn't in pain. From Rheumatoid Arthritis when I was a kid (thankfully I grew out of that in my early 20s), to severe endometriosis (which ended with a hysterectomy when I was 25), my frequently popping hips and knees and ankles and jaw and..., migraines and headaches, my stenosed and spasming jugular, my back, the inexplicable chest pain of Dysautonomia, and the neuropathic pain that has taken up residence over the past 6 years, my life seems to have always been tightly wound with pain.

I'm not sure why I don't really talk about this one aspect of my life more. I am very open about most aspects. I think in a sense in and out of all the various medical problems I have had over the years, it has simply become white noise. It isn't confined to one condition. Like fatigue it peppers pretty much all my various conditions. It isn't an entity unto itself.

And I have so many different types. When you head to a doctor and say it's not this type of pain or that type of pain, but a new or different type of pain they look at you like you are crazy. But say that to another chronic pain sufferer and they know exactly what you mean. My pain is just as complicated as all other aspects of my presentation. It's exhausting just thinking about it.

I know it's something I need to get better control of as pain spikes just make my autonomic symptoms worse. But where do I start? What first? Do I want more doctors? Or more meds? And do I really want to spend more money to be told by yet another doctor there is nothing they can really offer me?

Being chronically ill is an exhausting business. Every day my body plucks a new challenge from its repertoire. And every day I have to find a new way to manage it. Consistency would be a nice a change really. At least then, or so I tell myself, I could learn how to manage it all better. But for now I need to be able to think on my feet (or back, as the case may be) and be flexible and ready for any contingency. Some sort of rapid response, SWAT unit for what ever my body throws at me.

Or simply, as Mr Grumpy says, just tell this body of mine to get its shit in a pile.

Or even better, maybe I can just twirl around like Linda Carter/Wonder Woman. And Shazam! All the ill health is gone. At least in that version I might end up with some cool boots.

Michelle :)


Day I: Why do I write about my health.
Day II: Find a quote and use it as inspiration.
Day III: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 


I was going to add Johnny Cash's cover of The Nine Inch Nails, Hurt as the title is so apt, plus it's a fantastic song. But it's dark nature doesn't really fit today. I need a kickarse, sing it loud song to motivate me so I give you Basement Jaxx, featuring Lisa Kekaula, Good Luck.

Respect is a Two-Way Street: Day 5 NHBPM

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Topic: Health Activist Soapbox (My poor old soapbox is battered from all its use. I may have to MacGyver it to keep it together at this point)

As a patient with an unusual, complex, and poorly understood disorder, 9 times out of 10 when I see a new doctor I am the expert in the room. My team is large, with each doctor addressing one aspect of my presentation. But doctors who specialise in or offer comprehensive treatment for any form of Dysautonomia are, sadly, rare.

Most doctors will specialise in an area eg Neurology, but by and large patients with any form of Dysautonomia will form but a small part of their overall practice. In all fairness to the doctors, they must maintain a working knowledge of numerous disorders, but the depth of that knowledge is constrained by the very real factor of time. They may have a better knowledge of the disorders that they see more frequently, eg a Neurologist may specialise in Movement Disorders, but the majority of their patient load may be those with Parkinson's disease. Thus their knowledge will by circumstance, be greater in this one patient group. Conversely, when your diagnosis is complex the likelihood that any doctor you see will have a fantastic working knowledge of your condition or all the other aspects of your presentation, is not high. This is not an indictment on the capability of the doctor, just a simple fact of life.

However I, as the patient, have a limited range of medical issues which I need to focus on. I also have the impetus of wanting to be as informed as possible about my diagnosis and potential treatments. I am driven by a clear desire to improve my quality of life.

I spend my spare time researching my disorders on Medline. I flip through Cochrane Reviews, and review consensus statements regularly. I read up on the drugs I'm taking and keep abreast of current research trials. On forums, I can ask questions of other patients. I can find out the real world experience of drugs and symptoms and where to buy the latest gadget that will help. Distance is no impediment to information these days and if a trial is happening in Ireland or Brazil I can find out with the click of a mouse. I can contact researchers directly and keep up to date with real time advances.

Many patients, like myself, have come from the health field. We know the drill, the practical workings of the medical system and how to weigh up all the available information (nearly a decade of mind-numbingly boring research methods and statistical analysis, still pays off). After over 6 years of living with Dysautonomia amongst other conditions (eg significant gastric issues, multiple allergies and intolerances, connective tissue issues,to name but a few), and finding few doctors who could help me, I have become through necessity, an expert on my diagnoses and my particular presentation.

Some doctors are quite happy to acknowledge that I may know more about my disorder than they do. For example, my GP is happy for me to take the lead on my treatment needs. Even my cardiologist is happy to discuss my disorder in more of a collegiate manner, than the traditional doctor-patient relationship. This is not to negate my doctors own expertise which I value highly (as I said I have a good team now). Yet there are many others who are nothing short of dismissive. Should I dare to suggest a potential treatment or line of investigation the appointment can become adversarial. At times what I say is outright ignored.

Case in point my recent hospital admission. Despite having a red allergy band on my arm, sharing the information from my Allergist, and speaking to both my neurosurgeon, anaesthetist and senior nurse about my allergy to adhesives, I awoke to welts and rashes across my body. My pre-op information met with eye rolls, a sense that I was over-anxious, and thus completely ignored.

The use of regular adhesive dressings and steri-strips left me with inflamed and infected incisions, one of which has yet to heal fully after three months. Only through luck was my allergy not so severe as to be life-threatening. However, with severe autonomic dysfunction and a non-existent immune system, my body did not react well to the added burden of the allergic response. My recovery which should have been measured in a couple of weeks is now measured in months. I now also have highly attractive scars on my stomach from one particular adhesive.

This was my arm after a hospital stay last year. 

Adhesives (paper tape in this case) and I just don't get on.

I have a list of similar experiences. I've had a radiologist refuse to believe me when I told him I have hypermobile hips and degenerative disc disease, and was in pain during the procedure. This lead to a popped disc and hip, and months of rehabilitation. A substitute GP refuse to believe I had the early stages of a chest infection and refused to read my file, listen to my history, or prescribe preventive antibiotics, leading to a worse infection and longer recovery period. I have also been prescribed drugs which lower blood pressure and increase heart rate despite the doctor in question being aware of my autonomic issues.

The constant fight to be heard is exhausting. We are told that we must be our own advocates. That the future is patient-centred medicine. That rapport and making a patient feel part of the decision-making model leads to more compliance and more successful outcomes. Yet there are many doctors and other health practitioners who appear uncomfortable with, or refuse to move to this model of health care. Instead holding tightly to the traditional paternalistic model of health care.

I know my body. I live with it, and all it's quirks, every day. I know how it reacts in certain situations. I have a team of great specialists who manage all my various and complicated health needs. I have multiple letters that layout all my medical quirks in detail. I haven't plucked my information out of thin air. I, like many patients, have both the quantified medically determined results, a good handle on the available research, plus a plethora of anecdotal information from my personal experiences, and that of a large, worldwide population of experiences. That knowledge is an important part of any treatment plan.

Patients no longer live in a bubble where they are reliant upon their doctors as the only source of information. With the advent of social media and the ease of access to medical journals, patients can be as up to date, and at times, in front of their doctors, with regard to advances within their various disorders. We come empowered and informed to our appointments and have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us.

The medical community needs to be aware of the new ways information is being shared, especially the speed at which information can now travel. Instead of criticising patients for researching their ailments, they should instead be working with them, especially to direct them to more appropriate medically sound sources of information. Patients are already distrustful of big pharma and the way research is funded. If their physicians also refuse to help them navigate these areas or are dismissive of their efforts, such distrust will also pass to them, to the detriment of both practitioner and patient.

Why some doctors refuse to believe what their patients tell them baffles me. Whilst, a patient may not fully understand certain medical aspects, they are an expert on their own experience. Add in that many patients have medical backgrounds or are widely researched and such dismissal smacks of hubris. Information sharing must go both ways as patients are no longer content to be told what to do or think by their doctors. Just as patients no longer live in a bubble, so must doctors embrace the new technology of rapid information sharing and value what a patient tells them. Acknowledging that a patient knows more about their disorder is not weakness and should not be seen as a challenge to authority. Instead such knowledge should be seen as a positive tool to be used to facilitate better patient care. Conversely, a patient who feels listened to will be far more likely to respect and implement their doctor's recommendations, making their job much easier. Such mutual respect can only be a good thing for both parties.

Cheers
Michelle :)

Earlier Instalments of NHBPM
Day I: Why do I write about my health.
Day II: Find a quote and use it as inspiration.
Day III: I don't know about this, but I'd like to.
Day 4: A chronic handbag

R.E.S.P.E.C.T. sing it, Aretha!

A Chronic Handbag: Day 4 NHBPM

Is it Day 4 already? Time to pick my next topic for NHBPM. This one is a lot easier to pick, unlike yesterday when my brain melted and leaked out my ear whilst I wasn't looking. Though I have resorted to typing flat on my back with my legs up in the air. No blood pressure, doesn't allow much in the way of glamour.

Write about what's inside your bag/purse/backpack everyday.

A view inside my handbag is not for the faint of heart. The interior is somewhat similar in appearance to my teenage sons' bedrooms I mentioned in the first post, though thankfully minus the boy funk. It isessentially a dodgy lucky dip. You may get a used tissue, or an errant glucose jelly bean. You most certainly wont get to your phone before it finishes ringing as you fight your way through the various bits and pieces that seem to accumulate at an alarming rate.

The running joke growing up was my mother's handbag. It was amazing what she could shove in that A4 sized Tardis. Need a bandaid? She'd have a box. Pop a button? She had a sewing kit. Runny nose. There was a hanky, or six. Pen. Magnifying glass. Hair pins. Mints. Scissors. Aspirin. Whatever you wanted it was in there. And it was heavy. We knew she'd never be mugged as no thief could make a run for it carrying that ten tonne vinyl brick. And now here I am with my own overladen handbag. It seems I am becoming my mother, one bandaid at a time

There was a time when I had a small handbag.

 Oh how I miss you small red handbag.

Or a groovy and very organised brief case.

 It took me forever to find a green briefcase for work and now it just sits and gathers dust.

But that was pre-sick. Where a purse and a phone. Maybe some lippy and a little pack of tissues were all that were needed. Now I pack for all possible health contingencies.  Now I require a satchel/messenger bag that is practical to carry, across my body so as to not pop a shoulder. And large enough to carry all my various needs, though some days I think a pack horse would be easier. 

 Hello unattractive but very practical satchel.

These days the contents of my handbag reflect a life with chronic illness (I have removed the used tissues as no one needs to be subjected to that).

Where to begin. Lets see.....

1. There's a water bottle. Anyone with Dysautonomia must keep up with fluids wherever they are. Even in the middle of Winter. We dehydrate and overheat rapidly, and many, like myself, are already hypovolemic (low blood volumne) so we must suck down large quantities of fluids (2-3 litres a day or even more in Summer) throughout the day. I love this insulated Thermos water bottle as it keeps the water icy cold for hours and has a straw so I don't have to be upright to drink.
2. A fan. I overheat quickly, even in Winter thanks to anhidrosis (reduced sweating). The other day I was only sweating behind my right knee despite it being 30C. Sadly a single knee's worth of sweat is not enough to cool the human body. This cute little Japanese number goes everywhere and has been a life saver.
3. A Little Umbrella. Well really that's just one of those, 'just because' things. It makes me happy and doubles to make any drink a cocktail.

4. Spare Undies. Anyone with gastric issues will understand this one. Life with chronic diarrhoea is not glamorous in the slightest.
5. Loo paper. When you are forced to use public restrooms as often as I am you learn to take your own. Those thin, waxy squares of supposed loo paper should be banned, and the person who invented them drawn and quartered.
6. Puke bag. This covers the other end. Dysautonomia likes to play with your gastric system. and sometimes you just don't know which end, or if you're lucky both ends, will explode.
7. Lippy. A splash of red lippy can make you feel much better on a crappy day.
8. Lip balm. Chronic dehydration equals dried, cracked and bleeding lips. Lip balm is a must.

9. Purse and medical papers: filled with all the contact details of all my various specialists plus referral letters.
10. Bag of meds: or as I like to call it my STOP Bag. It contains all my emergency meds to stop my body doing all it's functions at full speed. Something to stop me puking. Something to stop me peeing. Something to stop me pooing. Something to stop pain. Something to stop fainting. Something to stop my tachycardia etc.
11. Hand cream. Again dehydration and frequent hand washing from all those loo stops means they are often super dry.
12. Glucose jelly beans: One thing that has gotten worse over the last 6 yrs is the sudden drops in blood sugars. I go from fine to hypoglycaemic (shaky and feeling like death) in a heartbeat. So these tasty little numbers are always in my bag.
13. Phone: I can't afford to be without one now, for all the 'just in case' moments. Mind you if my brain fog would have to remind me to charge it that would be helpful. It also allows me to connect to my support system on Twitter and Facebook at any time of the day or night. A vital function as many of us well know.

14. A flyer: for a local market that I keep hoping I'll be well enough to attend.
15. Sunglasses: My eyes have a lot of trouble with rapidly changing light as my pupils are now sluggish, yet another present from Dysautonomia. Driving on a treed road and dealing with the dappled and rapidly changing shade, leaves me with a headache and a distinct lack of focus. Even straight sunshine is now hard to deal with.
16. More lip balm: because you can never have enough.

17. A kazoo: A bloggy friend in the US sent me this red kazoo to cheer me up. Every time I see it I smile. I can no longer play it now as blowing triggers my touchy valsalva, which means my pulse pressure completely collapses. Which for lay readers, means my heart essentially stops beating and the blood just sits there, as I have the same amount of pressure in the systolic (squeeze) and diastolic (relax) parts of my blood pressure. And let me tell you, that feels really unpleasant. No more balloon blowing, whistling, singing or laughing either. Stupid buzzkill of a disorder. Did I mention his name is Kenneth?

18. Pens: you can never have enough.

19. Coin purse: for all the parking metres outside all the hospitals and clinics I visit.

20. Bulldog clip: just because.

 

21: Salt sachets: Dysautonomia is one of the few disorders you encounter where you must increase your salt intake. Combined with the increased fluids it helps to increase your blood volumne and thus your blood pressure. One of my meds Florinef actually requires salt to work. So whilst the rest of the world is  on the low salt bandwagon, those of us with autonomic dysfunction are chugging it down at every opportunity. At first this was hard to get used to but now I can eat a teaspoon at a time and have been known to down a sachet at various events just to make it through.

So there you go the contents of my handbag.

Cheers
Michelle :)

Earlier Instalments of NHBPM
Day I: Why do I write about my health.
Day II: Find a quote and use it as inspiration.
Day III: I don't know about this, but I'd like to.

This song really has nothing to do with the post other than I was listening to Paramore whilst I was writing and I like it. Plus, I was lacking the brain capacity to think of a more fitting musical accompaniment.