Showing posts with label NHBPM. Show all posts
Showing posts with label NHBPM. Show all posts

Monday, 19 November 2012

Advice for new doctors and nurses: Day 19 #NHBPM


When I sit down to think of the advice I'd give new doctors or nurses it comes down to one word, rapport. Take the time to build rapport with your patients and you will alleviate a large percentage of the potential problems that can arise for both parties.

It's a simple concept really but one that is often overlooked or relegated to an after thought in practice. It is often seen as a luxury that time-poor practitioners simply cannot afford. But in reality it can be established quickly and can make your professional life much easier, and more satisfactory, in the long run.

As a practitioner it was the cornerstone of my practice. Whether in an acute or sub-acute or rehab setting, rapport building was the first part of any assessment process. It was also integral to encouraging patients to participate in treatment or management. But it is now as a patient myself, that I can truly appreciate just how important the development of rapport can be. It influences my health care choices in ways I truly didn't understand and impacts upon both who I seek out for treatment and who's information I trust.

I actively seek out doctors and nurses who can genuinely listen and seem interested. Those that can understand that whilst I come to them for a particular problem, that problem does not live in a vacuum. A moments kindness or compassion can go a long way. In turn, if I find a doctor or nurse who is unwilling to treat me as a person, is intent only in seeing my illness or injury, is rude or cold, I go elsewhere. If a medical practitioner is unwilling to listen to what I am saying how am I to trust that he or she fully comprehends the issue at hand or the treatment they have prescribed.

Remember there is a person behind the illness or injury.

Rapport is a skill that requires practice like any other. Some are natural rapport builders and some need to apply themselves diligently to master the skill. But either way, it is a skill set that is vital to good practice.

A quick look on any patient forum or support group, and it is apparent that much of the dissatisfaction with the medical system reported is linked to how particular medical staff made them feel. A doctor who tells a patient they cannot help them or doesn't know what is causing their symptoms, yet makes them feel heard and understood, is much preferred to an expert with little to no bedside manner. Illness is scary and confronting. The system is such that as a patient you are often left feeling disempowered and isolated. You want to know that your doctor or nurse has your best interests at heart and that they are invested in your care. If that feeling isn't present a patient is far less likely to trust advice given or follow treatment plans.

Patients remember a doctor or nurse who made them feel human. Sadly, because that experience can often be the exception rather than the rule. They remember the doctor who listened to them and took that extra five minutes to make them feel like they matter. Conversely, patients will remember, and tell others, about the doctor or nurse who made them feel nothing more than a diagnosis or a body part. That negative experience will then colour future interactions in the medical system. Clinical skills are vitally important but rapport is often what will seal the deal for patients.

Patients share information. 
Often they will seek out recommendations from fellow patients 
for doctors and nurses who are known to have a good bedside manner
 on top of good clinical skills.
Whilst those who develop a reputation for dismissive or condescending interactions are avoided, particularly in small patient communities. 

In an age where doctors and nurses are time poor it can be thought that there simply isn't time for rapport building. But the reality is that it can happen incidentally during an assessment, whilst you are taking obs or just in a the general appointment. It's not complex. It can be as simple as small talk about a current sporting event or asking about a patient's family. It can be asking a patient if they have any specific questions that they want to ask, or how they feel about a potential treatment or prognosis. It could be taking into account they have small children when you are suggesting a hospital stay or the cost of medications you prescribe. Even a frank discussion about possible medication side effects can help with compliance. As a nurse or doctor you don't have to necessarily 'fix' these issues. But acknowledging they exist will go a long way in making a patient feel heard and understood.

Patients are no longer content to sit back and passively receive information and direction from their physicians. They want a partnership. And if you can create that experience for a patient, compliance and better treatment outcomes occur. It means your patients are more likely to give you the information you require for accurate diagnosis or treatment. It can also alleviate potential medical mistakes and injuries eg the growth of alternative medical practices means patients can be on multiple alternate therapies whose effects are often unknown or can interact with traditional medications. If these remain an unknown for fear of dismissal or ridicule by the treating health professional they can have potentially serious consequences.

Patients need to feel like they matter and that their doctor or nurse truly cares. Illness can be scary and confronting. You are often seeing a person at the worst time in their life. Your patient doesn't care that you have to see 20 other patients that day. In that one moment they want to know that you have their best interests at heart. That at some level you understand what they are going through. And that their well being is important to you.

The majority of patients don't understand medical jargon. Being able to communicate complex medical procedures or illness processes in a simple relatable and conversational manner is a skill unto itself. Taking the time to make sure that your patient understands what you are trying to convey is essential. Often patients don't fully understand or misunderstand what they are told but are afraid to ask. Established rapport means they are more likely to ask for clarification.

Conversely, many patients have difficulty articulating their medical issues. If they feel rushed or that pressured vital information may be missed. They may need time or prompts to help them clarify the issue at hand. Or simple trust to be able to share what they are experiencing. For example, I had a patient referred who was notoriously late to inpatient appointments and was deemed avoidant and uncooperative. Initially, her response was always that she was absent minded and would simply lose track of the time. It was only when she finally felt comfortable to reveal that she could no longer read clock faces (something that she found very confronting) that it was found she had visuospatial difficulties relating to a previously unknown infarct. A digital clock resolved her time management issues and she was referred on for stroke review and follow up. Without developing trust this issue may have remained undiscovered and future stroke risk factors not addressed. Others may be embarrassed to discuss certain issues particularly in regard to sexual, toileting or gynaecological difficulties instead talking around the issue or avoiding it altogether. If rapport is established the likelihood such issues will be reported, and therefore treated appropriately, are greatly increased.

Rethink how you communicate with your patient. Not just in what you say, but how you say it. Are you talking to, or with your patient? Think about your body language. Think about whether you are actually listening to what your patient is saying or have you already made your mind up. Use the conversation as part of the hypothesis testing process. Know without a shadow of doubt that a patient can tell within the first 5 minutes whether you care or are truly interested in what they are saying, and they will act accordingly.
Those initial days finding your footing can be difficult. It is both exciting and daunting to finally work in your chosen profession. You are armed with a wide clinical knowledge base and you are keen to apply it. But the clinical presentations, treatments and outcomes you've learnt about are only part of the package. The first few years are a huge learning curve. The greatest part of which comes from patients themselves. The reality of illness is very different to the clinical facts that are taught in uni, and will be different for each patient you encounter. But each encounter is a fantastic chance to learn and expand your knowledge.

There will be patients (and family members) who are still uncooperative and fractious no matter how good your rapport building skills. It's the nature of the job. But don't judge all patients by those few. The majority of patients are looking to you to help them. They want to feel better. They want to trust you and they are willing to work with you to get well. They are looking for a partner to help them navigate the often difficult and scary path of illness. Let them know you care and that you genuinely understand and it can be a truly rewarding partnership.
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.
Day 9: No Blogging Day.
Day 10: Taking a little Time.
Day 11: Strength
Day 12: Chronically Blogging Australia
Day 13: Taboo
Day 14: Favourite Blogs
Day 15: No Blogging Day
Day 16: How to be Alone.
Day 17: No Blogging Day
Day 18: No Blogging Day

Friday, 16 November 2012

How to be alone: Day 16 #NHBPM

"What about day 15?" I hear you say. Well Day 15 went past in a blur of "OMG I really don't feel right!" complete with numb face and rapidly greying vision* followed by waking up on the couch 3hrs later with a drool covered pillow stuck to my face. Sexy, no? Needless to say blogging went out the window in favour of wallowing in self-pity and being rockingly incoherent.

But I'm back baby. Tapping away for Day 16 like yesterday never happened.

Today's topic is easy.

Use a picture or video to inspire a post.

I have loved this video by filmaker, Andrea Dorfman, and poet/singer/songwriter, Tanya Davis, since I first saw it a few years ago.


 I have always been comfortable with my own company. In fact, I find I relax much better when by myself than with others. I like the time to clear my head and just be. I've been that way ever since I was a child. I was just as content, if not more, to sit by myself watching the Saturday afternoon classic movies on TV or immersing myself in a book, than out with others. I've always felt a little on the outer when I'm with other people. As if I somehow missed the secret code of fitting in, that innate shorthand of being in a group, which everyone else seemed to have mastered.

Overtime I grew to enjoy being by myself. Even pre-sick I would happily go to a movie by myself or drive into the city and go to the galleries or wander around the city laneways (Melbourne city laneways are amazing and well worth a look if you ever get the chance) for hours. I like losing myself in places and have always lived more in my head than in the real world. There is an ease, or maybe comfort, in my own company. Alone I can truly appreciate the world around me and/or immerse myself completely in an activity. And now when often there is no choice but to be by myself, I truly appreciate that comfort.

But I know for a lot of people being alone is hard. Sadly, when illness enters your life, particularly one that is chronic, many people find themselves unexpectedly alone. Initially, people are keen to help and support, but as time passes and you remain ill people tend to drift away and you find yourself spending lengthy periods of time alone.

Often even the closest of friends and family stop calling or dropping by. Illness means you can't participate in the regular aspects of life. Spontaneous social engagements are difficult when you have to plan in elements like rest and medications. Pain, weakness and fatigue don't work on a schedule. Regular social engagements may become beyond your abilities. You may have to cancel events at the last minute or leave after 10 minutes. Friends and family stop asking you to go out and illness can become a lonely road.

Learning to be alone is imperative to managing and coping with illness. But it can be a hard skill to master, especially if you are someone who thrives being with others. Even having been comfortable being alone before I became ill, I do get lonely at times. Because we all need the comfort of connecting to another human being at some point.

But it is not just the physical presence of other people. It is possible to feel very alone even when surrounded by a room full of other people. A life with chronic illness has it's own unique set of issues, emotions, and events. When you are with others who aren't ill and they are discussing their lives at work, their kids, the latest movies they've seen, the regular events of life, you can feel like the odd woman out. There is a disconnect that can be hard to move past.

Yes we can connect with others who understand thanks to social media, but you still need to master the skill of being alone. Of being comfortable with your own company. I love that the video above says it can feel uncomfortable at first, but with time you can grow to love and appreciate being alone. It's not about avoiding other people or becoming a hermit (mind you, I could probably rock the hermit lifestyle) but more knowing it's okay to be alone and being able to cope when those times come. It's about discovering yourself and all the possibilities you never would find if you are always with others. Alone is not a dirty word or something to fear. It can be beautiful and desirable when you learn to appreciate all it can give.

Cheers
Michelle :)

*Just a little note for all the uninformed doctors who don't believe that you can pass out sitting down. I was sitting on my chaise lounge with my feet up when I went arse up. But it's okay if you don't believe that can happen as long as you don't mind that I don't believe that you have any idea what you're talking about.

Thursday, 15 November 2012

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 :)

Monday, 12 November 2012

Chronically Blogging Australia: Day 12 #NHBPM

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

Sunday, 11 November 2012

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.

Saturday, 10 November 2012

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.

Thursday, 8 November 2012

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.
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.

Wednesday, 7 November 2012

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.

Tuesday, 6 November 2012

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.

funny gifs

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.

Monday, 5 November 2012

Respect is a Two-Way Street: Day 5 NHBPM


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!

Sunday, 4 November 2012

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.