RUOK Day 2012: Chronic Illness.

RUOK? day is coming up on the 13th September here in Australia and it's time to get involved. This brilliant initiative began in 2009 and has grown every year since. As the site explains:

"R U OK?Day is a national day of action dedicated to inspiring all Australians to ask family, friends and colleagues, ‘Are you ok?’ By regularly reaching out to one another and having open and honest conversations, we can all help build a more connected community and reduce our country’s high suicide rate."

"Connection and open, honest conversations are good for our wellbeing – whether or not we’re struggling with a problem. It helps us to feel valued and supported by the people around us. There's also an emerging body of research which links supportive social relationships and a sense of social connection with protective factors in suicide prevention."

As I wrote recently (here) the incidence of mental health issues such as depression or anxiety, are very high amongst those who live with chronic illness. As a group those with chronic illness are faced with illnesses and disability that are measured in years or, in some cases, life times. The physical toll is often high, but it is the mental and emotional toll, which often goes unknown by all but the sufferer, which frequently creates the greatest burden. It is important that we start the conversation about the mental health burden of chronic illness, particularly when unlike many of the chronic physical conditions, it can be addressed successfully with appropriate support.

The issue is complex. Stress is often multi-factoral and many are reluctant to discuss their difficulties for fear of being perceived as weak or the stigma associated with mental health issues. Dysautonomia is an umbrella term for a complex series of disorders that arise from the malfunction of the autonomic nervous system. Some forms are rare, but even amongst the more common forms, they are rarely discussed and not easily identified. Patients often experience long and stressful journeys to diagnosis. Even once diagnosed, the complexities of the disorders and lack of information and treatment pathways lead to ongoing high levels of stress. Add to that the severity of sometimes disabling long term symptoms experienced by many and it is not surprising to find that if actually asked, many patients will respond that they may be functioning but they are not necessarily OK.

Those with chronic illnesses that are rare or poorly understood such as the Dysautonomias, often face a long and soul crushing journey to diagnosis. With symptoms that are frequently vague or fluctuating, patients are told "it's all in your head", "you just need to get out more", "you're depressed". Many are faced with insinuation or outright accusations of malingering or lying. The story is repeated again and again on forums around the world. Even long after diagnosis these words continue to haunt patients who continue to hide their stress levels for fear of reignitig old accusations.

Being a chronic illness many find that their friendships and social relationships fall away over time. Friends who initially came around with a casserole or offered to take a child to school, call around with ever decreasing frequency or, simply disappear. Social isolation is a huge issues for many. Especially those patients in isolated or rural areas, or those in countries where little is known of the disorder. Even in larger cities and centres where there are more patients, it can be difficult to organise face-to-face meet ups with patients who are fatigued, have mobility issues and, thanks to the quirks of the disorder, may have to cancel engagements at the last minute. Whilst fellow patients may understand this, often friends and family do not and social invitations slowly evaporate. In my own case, many friends I thought would always stay by my side disappeared as my ill health increased. My circle of friends decreased over time until now I can count them on one hand. Although I would say chronic illness does aid in rapidly sorting the wheat from the chafe and whilst I may not have the same quantity of friendships the quality is far better. (online friendships have been a saviour, but that is another post).

Intimate relationships change. Husband and wife, becomes carer and patient. Trying to maintain a marriage in these circumstances can be very difficult without dedication. Often outside guidance and counselling is required to traverse the new and changing relationships. Marriage breakdown is common and even dating is often difficult. The strain of constant illness, inability or infrequency of intimacy, financial concerns, difficulty in maintaining roles such as house keeper, parent or cook can all mount to create problems in relationships. Additional difficulties can arise when a partner requires aid with personal care needs such as showering and toileting. Where does the role of husband stop and carer begin? Navigating these changes can be very difficult for couples many of who attempt to do this in private for fear of embarrassment or feeling like a failure. 

Parent/child relationships also change. Adult children may be forced to move in with aging parents. Conversely, young children can become carers for their adult parents. Parenting with chronic illness is difficult. Being able to care for small children when you can barely stand or are worried about passing out can be both heartbreaking and dangerous. Guilt is common. Even when the children enter the teenage years they may be forced to care for sick parents or are unable to socialise with friends and relationships can become strained. 

Many teenagers with Dysautonomia are unable to go to school or participate in regular teenage pursuits such as parties or sports. They are reliant upon parents at a time when they are normally asserting their independence. Again conflict can arise and strain exists for both patient and carer.

Work commitments are often challenged and unemployment is not uncommon for many patients. This creates not only a financial burden to families, but also a loss of identity. The first question asked at social functions is often "what do you do?" For someone recently unemployed this can be difficult to deal with and often those asking the questions are stumped as to what to ask next. For many, a career equals identity. We understand when someone says they are a doctor or teacher. There is a whole social schema that goes with each label. For many, myself included work was a joy. After years of study and working hard I had a job that I enjoyed and felt was making a difference in the lives of others. To give that up after a year of battling increasing Dysautonomia symptoms felt like the ultimate surrender. I felt like a failure. Added to that was the guilt of the financial burden I was placing upon my husband which was and continues to be high. 

Independence is often the first casualty of chronic illness. Simply being able to do the grocery shopping by yourself can be difficult. Many patients who experience frequent syncope are no longer allowed to drive which leaves them reliant on others for transportation. Being able to garden or go to the movies can be a Herculean task. A patients' identity can often seem lost with each small piece of independence that disappears. Spontaneity is no longer possible. A friend calling over for a quick, unexpected coffee can be overwhelming. Patients need to prepare for outings and entertaining through rest, medications, extra fluids and salt, after which they still may be unable to participate thanks to the unpredictable nature of the disorder. It is the normal social situations that others take for granted, particularly the small things such as going to a cafe, that are frequently reported as most missed by patients. And the inability to do such simple things often serves to highlight what they have lost.

Cognitive problems are also common in Dysautonomia thanks to poor cerebral perfusion, fatigue and medication issues. Patients are embarrassed by lapses in memory, inability to complete simple tasks, read a book or follow a conversation. For many, on a bad day, speech is impaired both cognitively and mechanically. Many withdraw from social interaction as they are either self-conscious or simply unable to take in all the competing information.

All of these issues are on top of the physical symptoms of the disorder with which patients contend with 24/7 (tachycardia, bradycardia, hypertension, hypotension, syncope, pre-syncope, weakness, fatigue, poor thermoregulatory control, gastrointestinal symptoms, urinary frequency, seizures, to name but a few). Whilst the physiological symptoms of Dysautonomia can be difficult to live with, it is the impact that they have on daily life, the social, psychological and emotional issues that many patients find the most challenging. 

The support for those suffering chronic illness is greatly lacking. Care fatigue ensues amongst friends and family as time passes and a patient either doesn't get better or, gets worse. Chronic illness doesn't fit into the normal sick paradigm associated with acute illness. There is no easily identifiable illness or injury, no clear and distinct treatment path and frequently no identifiable resolution after which the patient can resume their regular role in society. This leaves chronic illness patients vulnerable both medically and more importantly psychologically.

People stop asking if you're okay. As one of my readers wrote, "when I asked her why she didn't call to ask how I was, she responded "it's just your normal. I thought you were used to it"". Chronic illness patients are frequently forgotten until a crisis occurs. We develop means of coping, putting one foot in front of another, because there is no choice. There is no resolution as the disorder is chronic, you must learn a way to cope. Patients may smile and laugh , because they have learnt to find humour in the small things, but that doesn't mean everything is okay. It doesn't mean they are okay. It doesn't mean they are coping. Many are barely holding it together. Being strong for years on end is difficult. Sometimes we all need to be asked "R U OK?" 

Please take the time to ask the people in your lives R U OK? If you have someone in your life living with a chronic disabling illness like Dysautonomia take the time to truly ask "R U OK?" It wont take long and they will appreciate that you care. You don't have to solve their problems, just listen and be there. Start the conversation. 

If you are unsure how to ask someone, R U OK? Day has some fantastic resources available. 

Importantly, if you're the one who isn't OK, but you're not sure how to tell someone or ask for help, they have information and resources here. 

You don't have to be in Australia to participate. Nor do you have to stick to one day a year. You can ask "R U OK?" anywhere, and any time. Start the conversation and change a life.

Cheers Michelle :)


If you like, feel free to share.

ABC Ramp Up Article

Well my response to the NYT's article was accepted for ABC Ramp Up today. A wee bit chuffed (I don't think I've ever been anyone's Editor's Choice before), and nauseous, and the vein on my temple may be pulsing, but mostly chuffed. I think. Ask me in a few days. Too much caffeine induced anxiety today, thanks to two kiddy specialist appointments. Argh.

It's pretty much the same post, but a bit less rambly and wordy. 515 less wordy in fact. Good lord it's hard losing 500 words. I recommend the ingestion of alcoholic beverages and copious amounts of Lindt before attempting such tasks.

You can read the new smooth, shiny, way more mature, article here.

It's been a bit of a highlight on a really shitty week which included one of my dogs having a mental breakdown and being put on antidepressant medications. Trying to manhandle 60kg of bat shit crazy Great Dane into a car and at the vets is about as much fun as a rectal probe. But we made it through without too many new grey hairs and minus me passing out in her wee on the vets floor. Bonus. Though she did sit on my lap and pee on me, which pretty much summed up the last week.

To top it off my bowel of discontent, has mounted a well-organised resistance movement (HA! 'movement', I even amaze myself with my hilarity) against the H1s and H2s that I was so excited about. Luckily I'm off to see Gastro Guy on Wednesday, so hopefully he'll have something new in his arsenal with which to tackle the problem. Fun times. Fun. Fun. times.

So on that bright note I leave you with this highly appropriate and helpful book that I found today.

Toilet Yoga because sometimes sh*t doesn't happen.

"The book con­tains 15 ‘poses’ that work in var­i­ous sit­u­a­tions and loca­tions. The guide walks you through the move­ments so you can walk through yours (or sit). Depend­ing on your skill level, you may choose to start at a 1 bowl on our rat­ing scale, or if you’re feel­ing adven­tur­ous, move up to a 3 or 4 bowl move. As you progress through our teach­ings, you’ll be con­fi­dent that you can safely han­dle a 5 bowl maneu­ver".

Love it!

From an article on a national news disability website, to pooing with yoga. I like to think I provide a little bit of something for everyone.

Cheers
Michelle :)
After this week this seems somehow appropriate.

Don't forget to enter the draw (click here) for a copy of Animal Planet, the new novel by Charlotte Wood. 

Entries close midnight, 25th November 2011.

Craft Like You Don't Have A Chronic Illness

My blogging has been a bit all over the shop lately. Partly due to the usual feeling like death warmed up. Partly due to apathy. And, partly due to the fact I'm trying to actually get around to some of the craft projects that have been collecting dust and dog hair all over my house.

Last Hardwaste (for those who don't have this, it's the magical time of year when you can put all your large rubbish items out on the street and the local council comes round to collect it, free of charge) I scored. I personally think of Hardwaste as a bonus Christmas. People put out some amazing 'rubbish' and I am not ashamed to stop on the side of the road and re-appropriate these unappreciated treasures. Even my children get in on the act, with an audible groan and eye roll. They love nothing better than being made to get out of the car and fossick around in someone else's junk. They have carried all sorts of treasures home for me. Tables, wardrobes, chairs, old braziers, the list is endless. I've even roped their friends into the act. Suck it up boys. I feed you. You can carry crap.

And I've found some great pieces over the years. As soon as I see a piece my mind starts whirling with possibilities. And by the time it's stored in the rumpus room I know what I'm going to do. Pity that my poxy body often refuses to go along with my plans. Makes it hard to buy paints and varnishes when you're physically incapable of driving. And even harder when you don't have the strength to lift your head from your pillow, let alone sand down some woodwork. So many of my projects take 6mths to a year to complete.

My latest project is a large pine-framed mirror that I found on the side of the road. It's huge and heavy and I already know where it is going in my loungeroom, well once it's had a bit of a make over. I'm rather proud of how it's turned out. Now I just need to get Mr Grumpy to hang it for me.

You can see by the back of the old lounge it's leaning against, it's rather large.

The frame was pretty boring so I decided it needed more than just a coat of paint. There is a poem I have loved for years. The River Merchant's Wife*, by 8th century Chinese poet Li T'ai-Po, and translated by Ezra Pound in 1915. I made a pdf of the poem, cut and pasted to fill an entire A4 sheet and had Mr Grumpy to print them out on the laser printer at work (important if you don't want the ink to run). And used these to paper the frame.

Nice and Cheap

 My high tech, can of chickpeas solution, to elevating the mirror

Unfortunately the way it was made, I couldn't remove the mirror from the frame 

so had to paper the mirror to keep off the paint and varnish.

Finally a use for all the articles from my thesis. 

"Lateralization of human nasal chemorecepetors..." is exciting stuff. No, really it is.

Quick coat of white paint to stop any remaining traces of varnish coming through. 

Also gives a better background to the white paper.

 Two days of frustration, swearing, spilt glue, and three layers of varnish later, it is finally papered.

Voila! Shitty photo of new mirror.  

How do you get a decent photo of a mirror without getting your ugly mug in it?

A weeks worth of work, a lung full of carcinogenic varnish fumes, and one new mirror. Woo Hoo!

Now for a prolonged nanna nap.

Cheers

Michelle :)

*The River-Merchant's Wife

While my hair was still cut straight across my forehead
I played about the front gate, pulling flowers.
You came by on bamboo stilts, playing horse,
You walked about my seat, playing with blue plums.
And we went on living in the village of Chokan:
Two small people, without dislike or suspicion.
At fourteen I married My Lord you.
I never laughed, being bashful.
Lowering my head, I looked at the wall.
Called to, a thousand times, I never looked back. At fifteen I stopped scowling,
I desired my dust to be mingled with yours
Forever and forever and forever.
Why should I climb the look out? 
At sixteen you departed,
You went into far Ku-to-en, by the river of swirling eddies,
And you have been gone five months.
The monkeys make sorrowful noise overhead. 
You dragged your feet when you went out.
By the gate now, the moss is grown, the different mosses,
Too deep to clear them away!
The leaves fall early this autumn, in wind.
The paired butterflies are already yellow with August
Over the grass in the West garden;
They hurt me. I grow older.
If you are coming down through the narrows of the river Kiang,
Please let me know beforehand,
And I will come out to meet you
      As far as Cho-fu-Sa. 

Blogging and Chronic Illness: Reclaiming Your Voice

I'm often asked why I blog. Or, as my sister put it "Why put yourself out there? It's dangerous. A serial killer could hunt you down, chop you up, and send your boxed head to your husband in a dusty power line-filled field".  Okay, she might not have quite added the Se7en reference, but her 10 minute panicked rant did come close.  You should have seen her face when I casually mentioned I also vlog.  I should have heeded my own advice of "don't poke the bear". But sometimes I just can't help myself.  My sister's response, whilst a tad melodramatic, is not unusual.  Unless you are a blogger or use social media, it can be a hard world to understand.

Putting your life out into the public arena can seem strange. I'll have to admit pre-blogging I couldn't quite understand the appeal. But two years later, it has become a normal part of my life.  It is an outlet. My therapy. A chance to process events and my reactions to them.  By the time I push 'publish', I am generally in a much better place than when I first tapped out a group of disjointed words on the keyboard. There are generally less expletives in the final product too, which I'm sure makes my mum and mother-in-law quite happy.

It is easy to lose yourself in illness.  It becomes harder and harder to judge the past.  Am I worse? Am I better? Am I just the same? Blogging provides a written reference of changes, good and bad, over time.  It takes away the guess work and gives me a reality check, especially when I am being swamped by the maelstrom of emotions and hyped up symptoms that occur periodically.

Blogging is perfect for those with chronic illness. When you are ill, particularly if you are stuck at home, you often feel like you have no voice. Blogging can be your voice.

I am in no way a blogging expert. I can't be bothered reading the rules. And frankly, even if I did I'd still just do my own thing as I'm too lazy to make sure I've checked all the blogging boxes. Lets see, eat a block of Lindt, or check rules? It's not exactly a difficult decision.  Of course my lack of expertise wont stop me from giving my opinion. Here are some of the positives to as to why you should consider entering the blogging word and some of my basic tips for blogging.

Why should you blog?

You don't have to frock up.  

You can blog in your manky pjs whilst drinking coffee.

Or, blog in your manky pjs, whilst drinking coffee and wearing a bright pink feather boa. 

No one will ever know, unless you post photo's like a mad woman. (Note: clever placement of coffee mug to conceal face and appease melodramatic sister.  Mind you, no one really wants a crazy Kevin Spacey turning up on their doorstep, so she may be onto something. Don't tell her I said that. I couldn't stand the big sister smug 'I told you so" face).  

Blogging doesn't require a fancy office. You can blog lying on the couch, your bed, on the floor, or with your legs up a wall. You can blog in your backyard, in your bathroom (cool tiles are important), or from a hospital bed.  Essentially, it is perfect for those with chronic illness.

The hardest part can be doing that first post. I can tell you now, you will never be fully happy with your first post.  You'll draft and re-draft until your fingers are little more than bleeding stumps.  You'll look back in two years and ask yourself "what was I thinking".  This is almost always followed with the ostrich method of dealing.  Head stuffed firmly in the sand whilst repeating the words "it doesn't exist if I don't believe it exists", and a pointless vow to avoid further trauma by not reading that post again.  If you're anal like me, self-flagellation is order of the day. So you might as well just grab a margarita and get comfy.  My tip: write a post, about anything. Put it aside for a day.  Come back read it again, edit and push 'publish'.  It's like tearing off a Bandaid.  Don't think, just do it. You'll realise after it wasn't that painful.  Each subsequent post will be easier. I promise.

If you want people to read, and lets face it we all do, even when we say "I just write for myself", make it user friendly. Remember that the majority of your readers are also likely to have a chronic illness.

• Use paragraphs, short ones if possible: It is really hard to read a post that is one big paragraph. Attention and concentration are not our strong points. Nor is visual tracking.
• Use a plain background: It is near impossible to read text on a patterned background. I know personally, overly patterned backgrounds can set off a migraine, or at least a bad headache.
• Use a large, basic font: again small font is hard on the eye.
• Plain black font on a white background is easiest to read: You can still have a colourful boarder and header, but leave the text space plain.
• Use pictures: This breaks up the text and again makes it easier to read.  
• Don't use Captcha or Word Verification: These are a sure way to make people move on without commenting. You get little spam when you are starting out anyway.  I was really excited when about 6mths in I got my first "enlarge your penis in 10 days" spam as it meant that I was getting more traffic.  Most platforms will also have spam detectors inbuilt.
• Comment on other blogs: If you want people to read your blog and leave a comment it is a bit of a quid pro quo. Show an interest in someone else's world and many will come to check out yours.

As to what you choose to include or not include in your blog that is a purely personal decision. Like other forms of social media, if you use The Billboard Rule, ie If you wouldn't want to see it on a billboard don't put it out there, you should be okay. Not that I really want to see "Michelle has chronic diarrhoea" on a giant billboard as I drive into the city.  But I also know that my apathy and tendency towards meh, would mean I probably wouldn't care all that much. Most blogging platforms (eg Blogger and Wordpress) will also allow you to keep your blog private, or invitation only. So you can choose who can see what you write. 

Most importantly simply share your story, whatever that may be. Readers can spot a formula, or insincerity at a thousand paces.  Everyone has a story and it is far easier writing about something that stirs you, rather than a topic you think might be popular. The reality is no one else will tell your story, it's up to you.

I tend not to discuss my kids and family, except for the occasional reference. Even then I use pseudonyms to maintain their privacy. I also don't mention the names of my medical professionals.  One conscious decision I made early on was not to offer medical advice. It's one I've stuck to, and would strongly recommend to others. I may discuss my experience with a medication, but I would never suggest it to others as we all tend to react differently to pharmaceuticals. Any medical decisions need to be discussed and made with the medical professional most experienced with your case, not a woman in plaid pjs and a tie-dyed t-shirt with a huge chunk of Great Dane spit stuck to her foot.

Blogging should be fun. It should be cathartic. It shouldn't be a chore. There have been times where I've stepped back for a few weeks. The reality is that I am ill. At times my symptoms go into overdrive, or simply dealing with it all becomes too much. I don't beat myself up about not blogging during these times and neither should you. There are many guides around about how often you should blog and when.    They are great if you want to systematically build a readership, or develop your blog as a product or business. But if like many people, myself included, you simply want to tell your story, or raise a bit of awareness, you don't need to religiously adhere to these guides. We have enough going on without adding to the burden.

The best and most rewarding part of starting a blog is the community. Finding that one person who says, "I thought I was the only one!" The support and friendship you discover from all over the globe is both surprising and priceless. You discover that we share a common humanity that outstrips any geographic, language, social or economic differences. When I first started this blog I thought people would think I was a complete nutter.  Instead, what I found was a lot of people who are going through the same experiences, and equally felt alone and crazy.  I found people who were there to laugh and cry with me. To hold me up when I couldn't stand anymore, and who in turn I've stood beside during the hard times. People who also find farts and Monty Python funny. And that Dorothy shoes are the key to happiness for many. And a strange bunch who, according to my Google Search results, are curious if "Don Johnson smells cat urine" and want to see "Gnomes with big boobs". Whatever floats your boat I guess. 

If you want to raise awareness for your illness a blog is a great vehicle.  I know via this little blog and others like it, there are now many more people around the world who have heard of Dysautonomia.  Perhaps even more importantly they know what it's like to live with illness, the good, the bad and the downright ugly.  Telling your personal story, gives a clearer picture of an illness, than a sheet of facts ever can.   

So who's going to take the plunge and reclaim their voice?

For those who already blog. What's the best part for you and what would you say to encourage others to enter the blogosphere?

Michelle :)

Lets get this party started.

Pink - Get The Party Started by sayit

Leap of faith

(photo)

Long time readers will already have a far too intimate knowledge of my bowel habits.  I don't shy away from the less glamorous side of living with Bob.  And, lets face it, we've all been there at some point. Whether it's related to a chronic illness, a dodgy late night kebab, a stomach flu, or a trip to foreign lands (Bali Belly, Montezuma's Revenge), few are those who have not experienced the joy that is a disgruntled gastrointestinal tract.

I have been living with a permanent burning ring of fire since the beginning of August. And apparently supplying my offspring with endless comedic moments. My youngest will periodically sneak up behind me and play Johnny Cash's famous song on his ipod. Whilst simultaneously peeing himself laughing.  Because mum's chronic gastro issues are simply hilarious (or 'hil.hairy.arse' as we tend to say in our classy household).  Admittedly we, as responsible parents, played this same song for him when he was being 'cleansed' for his gastro scopes earlier in the year. So really I only have myself to blame. And, yes I am up for Parent of the Year.

Last weekend a trip to my GP reached a depressing low.  Bulk prescription for GastroStop.  Fanfrickentastic.  Because that's just what every 38-year-old woman wants to buy at the chemist.  Or even better, send her long suffering husband out to purchase on her behalf. Mind you he has carried a 4litre bottle of my wee to the local pathology lab, so really purchasing bulk stool hardening pills is a cake walk in comparison. I wonder if he thought he'd be undertaking these kind of tasks for me when he agreed to the "for better or worse" line on our wedding day. Love is a beautiful thing, no?

My next appointment to see Gastro Guy is not until the end of November.  (Is it sad that every time I say 'Gastro Guy', I envision him as some sort of comic book hero.  I can see the tagline now, "Villains tremble when Gatsro Guy produces his latex gloves, SCHNAP!".  Dear lord, I really need to get out more). I have not been looking forward to this delay as it means continuing imprisonment in my ever shrinking four walls.

After leaving a comment/whinge/woeisme/sookylalapants rant on a forum, I was contacted by a fellow Bobette in the same rectally-challenged position as myself.  She suggested that I try H1 and H2 antihistamines (often used for those who have Mast Cell Activation Disorder, MCAD, a common comorbidity in Bob) as they had worked well to control her own rear firehose.   Normally I double check this type of information with my GP. But given they are over the counter meds, so no prescription required, and I am over forking out my life savings for the pleasure of waiting an hour in a germ filled waiting room, followed by the usual, trial and error, medical guinea pig answer I normally get, I thought bugger it.  So once Mr Grumpy was sent off to the local chemist to purchase yet more pills.

To say I am surprised by the result would be an understatement.  From the first day of taking the combined H1 and H2s I have gone from double digit, bolting/stumbling/praying, to the loo, to 3-4 times a day.  WHOA! I here you say.  You're talking crazy, Crazy Lady! But it's true. These two little tabs have reduced my vacating substantially, and my butthole is oh so grateful.  Even the rainforests of the world have breathed a collective sigh of relief to know that their brethren will no longer be slaughtered in record numbers to meet my excessive tissue consumption.

In the spirit of full disclosure, I have to say it's not a complete answer.  I am still nauseous, consistency has changed little, and my stomach continues to speak in tongues at 80 decibels.  But frequency has reduced substantially.  And that has given me some of my life back.  Did you know that if you aren't crapping yourself stupid every three seconds you can pot a plant, and wait for it....walk up a flight of stairs.  Whoa, I know I can't believe it either.  As, I said to the lovely Linda, who put me onto this idea, I'm pretty sure I owe her my first born, or at least a kidney.

So the plan is to trial it for two weeks, stop it for a week, and see what happens.  I'll also be double checking with Gastro Guy, when I see him, about the safety of long term use.  As frankly, I hardly need to add another problem to my list, especially one that could be avoided.

So for now I am simply rejoicing in my reduced bathroom time.  Laughing at the irony that my newly reduced frequency, would still be a cause for concern for regular folk. Amazing what you can get used to. I may even get crazy and walk up a flight of stairs again. Or go all out, and walk to the letterbox.  Oh the possibilities.  I may even go all Braveheart, and scream "FREEDOM", from my bedroom window.  Its not like my neighbours think I'm normal anyway.

The world is my oyster dear readers. The world is my oyster.

Michelle :)
I'm back baby.

.....and the horse you rode in on.

Warning: Woe is me post ahead.  May contain TMI, pathetic loads of self-pity, a wee bit of incoherent ranting, and sailoresque swearing.

Being ill has knobs on.  It really does.  Just when you think you've taken a step forward, you find yourself hugging your porcelain lover or sprawled out on the cold, hair-covered tiles of your bathroom.  It's frustrating beyond belief when you do the old "think positive" trick and your body says "Hell no, crazy woman.  You're my biatch, and you might as well get used to it".

My gastric system is out of control and frankly the last few months have sucked.  All the drugs I take are basically doing bugger all and I often wonder why I persist.  I look back at this depressing, rambling, vlog I did a month ago and realise nothing has really changed.

It's rather confronting to have the truth displayed up there is full pasty colour (and what's with my weirdarse left eye?).  In some ways I am better than when I went into hospital, though I'd be hard pressed to find specifics.  And no amount of positive thinking is going to change the facts.  I can't even get back into the GI specialist until the end of November so I am stuck in a gross no man's land that has left me pretty much housebound and dependent, since August.

Whilst, the physical symptoms that I currently have are quite repulsive and hard to deal with, it's the way they impact on my day-to-day life that is causing me the biggest heartache.  Yes I need to go to the loo a bazillion times a day, that I can sort of deal with, though my butt hole may disagree.  But this one issue impacts on my ability to leave the house.  I have to be sure I am in close proximity to a loo at all times.  When I need to go, I need to go immediately.  There is no choice.  There is no clench your butt cheeks and will your sphincter to stay closed, it's a mad dash to the closest bathroom with a quick prayer to every deity known to man that you'll make it.  I even have an emergency pack in the car, just in case the humiliating and downright disgusting sphincter fail should happen to occur (it hasn't yet, but I will now run around and touch every piece of wood in my house). Yep, I'm living the dream right now.

Then there is the joy of the public loo to contend with.  I don't have time to wait for the key to a public bathroom.  And more importantly, I don't want to have to use the rancid petri dish that is the public toilet. Particularly as the last few months I have come close to passing out each time I go.  Face planting on my own tiles is not great, but doable.  Face planting on a melange of strange short and curlies, and mystery 'deposits', in the unisex loo of the local 7/11 is not high on my 'to do' list.

The logistics are only one fun part of the problems associated with increased gastric symptoms.  Going so frequently, means weight loss, which in turn, means increased Bob symptoms.  I am exhausted.  I have spent more days confined to bed in the last few months than I have in the previous year.  More days where standing becomes a Mission Impossible.  More days where simply showering leads to squishing magic carrots down the shower drain with my big toe, and crawling back to bed.

Some days start relatively okay and I make plans to catch up with friends.  Stupid, delusional woman. But my body is currently balanced on a knife edge and one little thing leads to a big ugly fall.   That one thing could be doing a load of washing.  Daring to sit out in the garden for 10mins.  Or even, the simple act of showering.  Last week I was really looking forward to seeing my best friend, but an hour before she came over I had to cancel.  Of all the friends in my life, she is the one who is never phased by me being sick.  My being KOed on the couch would be okay, we'd still chat and laugh, I'd just be horizontal and vague (not unusual). But on that day I knew I couldn't even do that one simple thing.  And that's what I hate about this whole illness crappola.

I can deal with the physical symptoms.  You get used to managing.  To becoming creative (eg cooking whilst seated).  It's not pleasant, but it's part of the drill.  I look at the scales that class the severity of Bob dependant upon criteria such as heart rate, blood pressure, how long you can stand, and think how inadequate they are.  The severity of Bob and other illnesses is related to how much they impact on my life, not whether my bp drops into my toes when I stand.

I am shat off that I can't drive, that I can't just go for a coffee, or even, sad as it is, do the grocery shopping.  I am peeved that this illness stops me from catching up with a dear friend.  I am crapped off that I can't participate in my family like I want.  I want to punch well-meaning people who tell me to "have hope", 'it'll get better", or "you just need a positive attitude".  I don't want to be 'brave', or an 'inspiration' or all the other words that get tossed around.  Nor do I want the expectations that are attached to such labels. I am neither. Dealing with the hands you are dealt, when you have no choice, isn't 'courageous', it's merely practical. Bare bones, one step in front of the other. Illness is ugly and messy and sometimes you just want to scream. And so I am angry, in ways I can't even articulate, that the small amount of freedom I had prior to August has pretty much evaporated.

Some days, living with Bob is like treading water, maybe if you're lucky a little sculling whilst you float on the surface for a while. Other times it feels like you're drowning under the weight of the emotional, social, and psychological crap that comes along with the diagnosis. I don't want to acknowledge that with no change since August, this may be my new normal. I can't wrap my head around that yet.

So instead I take the oh so mature high road and say to Bob and my gastric system, "Fuck you, and the horse you road in on".

Tomorrow I'll paint on my happy face, fight through my bad attitude, and keep on keeping on. But for today I choose the classic "Pout and Wallow" method of dealing. Oh how proud my old psychologist peers would be.

Michelle

Nothing says I can't wallow and listen to funky 80s dance hits.

Because somedays, it's all about Plastic Bertrand

Well my plans for normal have gone a bit awry.  Bob and my stomach have ganged up to bitch slap me back into submission.  And once more my world consists of pjs, pillows and white tiled ensuites.  Crazy plans of normal have been replaced by harried trips to pharmacies, bulk purchases of air freshener, and, an apparently infinite, bowel of despair.

Times like these, only Plastic Bertrand can truly explain how I feel. (le sigh)



Michelle.

Invisible Illness Week 2011

This week marks the start of Invisible Illness Awareness Week (okay, so it's more of a US initiative, but here in Australia we are bit lacking in the PR side of things, so I thought I'd jump on the bandwagon to promote a bit of awareness in the Land Down Under).

As someone living with a nice little collection of invisible illnesses I know the challenges that can arise.

For those new to the blog, I'm 5yrs into living with Dysautonomia, or Bob as I like to call it.  Well five official years, if I look back at my photos pre-2006 I have a lot of sexy purple leg shots.  And if I look back over my life I have had periodic symptoms since my teenage years.

I am also living with:
Progressive neuropathy,
Degenerative disc disease,
A mutant jugular vein called Jeff,
Boobs that persist in growing in places there not supposed to, and popping out painful cysts and fibroadenomas like randy rabbits.
And if I ever pull my finger out to get an official diagnosis, Ehler's Danlos Syndrome.
To top it off I now have my delinquent gut, for which I am still looking for answers.

In other words, I have the Ford Pinto of bodies.

Despite my delightful and ever increasing list, I still look pretty healthy on the outside.  Okay not so much in the last two months since my dodgy gastric system has taken up residence.  As Mr G says, "well at least you look sick now".  Thanks honey.  Always there for the moral support.  But in general I can put on the spackfiller, whip on some lippy, and look relatively normal.  This can make my health issues seem rather confusing for others.

Apparently, I simply "don't look sick".  I also don't act like a sick person, whatever that means.  Foiled once more by my own Oscar worthy acting abilities.  The logical conclusion to this being, people think you're either not sick, or not as sick as you claim.  Which is understandable, right?  Because all real illnesses are visible.  You know, like Diabetes or heart disease.  Because their years of no medical training, makes them experts at spotting and diagnosing illness. (Okay, I may still be a little bitter about a few people).

It doesn't help that I was stupid enough to pick the obscure disorders.  The kind that no one, not even most doctors, have heard of.  And if it's not enough that they are obscure, they are also complex.  All of which adds up to yet another layer of invisibility to contend with.

What's a girl to do?

Should I highlight the black circles under my eyes?
Should I lie dramatically on a couch and moan?
Should I "woe is me" at every opportunity?

Would that make my invisible illnesses more real?

Maybe for other people, but not for me.

I live with it everyday.  They are very real to me.

It is real when I can't stand in the morning because my bp is so low.
It is real when I can't string a sentence together.
It is real when I can't open my eyes due to the excruciating pain in my head.
It is real when I have to lie on the tiles in my bathroom following a shower.
It is real when I can't feel when I've cut my legs when shaving, or burn my hands when cooking.
It is real when I have to hold my hips in with my hands when exercising.
It is real when I am bent over the toilet in a public bathroom because the nausea is so bad.
It is real when I lie in bed unable to sleep because my feet are burning to the point where I cry.
It is real when I pop a disc in my back because I have a scan at my local hospital.
It is real when I can't coordinate my legs to walk properly.
It is real when I grab the wall or have to stick my head between my legs because I simply went to the loo.
It is real when I can't get cool in the middle of Winter and must put on an airconditioner.
It is real when I can't exercise because it causes my bp to drop.
It is real when I can't feel the pedals in the car through my shoes.

It is real to me in a million other ways that I could list, but that most people will never see, or understand.

Disbelief and dismissal cut deep.  They attack the spirit.  Heard enough times, they are internalised until the criticism comes from within as readily as it comes from without.

It must be in my head.
I must try harder.
It is my fault.
There are others worse off than me.
I am not worthy.

Acknowledgement isn't about pity, it's about compassion.

Just because you can't see someones suffering, doesn't mean it doesn't exist.
Just because you don't understand, doesn't make it less real.

Compassion costs nothing.
But is priceless to those who receive.
And is a gift to those who choose to give.

Michelle :)

Here's a little post I wrote a couple of years ago.
Dysautonomia: Invisible Illness My Arse.

I'm a Salty Wench

Bob continues to go all WWF on my body.  Brain cells have left the building, along with my bp, pulse pressure, and the ability to ablute like a normal person.  So I thought I'd put up the post I initially tried to schedule pre-hospital admission.  Obviously my brain was firing on all cylinders that day as it failed to post. 

One of the strangest parts of having Bob, is our need for salt.  People look at you crazy when you say you have a health condition where you must have salt.  And not just a little salt.  As my cardiologist says, "if you can still taste your food, you're not having enough salt".  Whilst the rest of the population is doing everything in their power to decrease their salt intake to aid vascular health, we Bobettes are mugging cows for their salt licks.

There is only one form of Bob that should avoid salt, Hyperadrenergic POTS, but the rest of us need to live on a saltpan.  I still remember the look on the poor OT's face when I was in hospital and she handed me the stock standard cardiac health book, with it's anti-salt campaign.  It's hard for others to understand.  When I tell my GP that I often just have a teaspoon of salt in the morning she looks horrified.  Yes GP I am living in crazy town and it's full of salt loving freaks.

One of my medications even requires salt to work.  It's on the little information sheet that comes with the bottle.  I only scanned the sheet so I'm not sure if it mentioned tequila and lemon as an additional requirement, but it only seems logical that they'd also make it work better.

I collect salt sachets everywhere I go.  A bowl of sachets on a shop counter really is an invitation to take what you need.  Just because my need is larger than most, shouldn't stop me from clearing them out.  And really I'm performing a public service by removing the salty temptation from others who need to lead a salt-free life.  It's all very Mother Teresa.

I carry a stash of salt sachets everywhere these days.  In my purse, in my handbag, in the glovebox of the car.  You just never know when you're going to need that salt hit to get your bp up.  I don't advise keeping the sachets in your coin purse though.  I know from my own early rookie mistake, that the gross metallic taste can permeate those little paper packages and make you gag.

(My purse salt sachet stash)

I have a good knowledge of emergency salt sources for the times where my brain fog has let me leave the house without a single grain.  Burger Rings (1140mg per 100gm) are one of the best sources.  They have the added bonus of making me feel like I'm 12 again, especially when I wear them as rings on my fingers.  And I like to think of a packet of Thins (596mg per 100gms) as purely medicinal.   Not to mention my encyclopaedic knowledge of the most salty foods eg fetta and miso.  And the joy of brine.  Mmmmm......brine.  How I love thee.

(And now the Lindt gods have smiled on me and combined chocolate with salty goodness.  

This can now qualify as purely medicinal.  Thank you.  Oh thank you.)

I make my own flavoured salts which I use at home.  Herbed salts are what I mostly make, but you can add pretty much anything.  And it's so easy that you can make it with complete success in the midst of a shocker of a brain fog.

All you need is:

• An old coffee grinder.  You really need to dedicate this grinder to future salt production unless you like your caffeine with a salty/herby/spicey aftertaste.  I found this out the hard way after a less than pleasant mug of salty, fennel seed coffee.
• Good quality salt.  When I can afford it I buy a good quality sea salt flake or a Murray River Pink Salt.  Ironic that the area of my youth that was decimated by salinity, now produces tasty salt to sprinkle on my fries. 
• Herbs dried or fresh. My favourite is rosemary, but thyme is a close second. You can use a softer leaf herb such as basil or oregano but the moisture content can make it a bit too moist if you're not careful.
• Spices.  Fennel seed is great.  As are everything from chilli flakes to cumin.  And Szechuan pepper is yummo on calamari.
• Citrus rind.  Any citrus will work, though I have a preference for lemons or Tahitian limes.  Use a microplane (which maybe my favourite kitchen gadget ever) to collect the rind.

I don't really measure quantities as I am more of a measure by sight and feel, cook.  But if I had to guess it's be about:

• 1/3 to 1/2 cup salt

then depending on what flavour you want, add

• 1tbsp fresh herbs
• 1 tsp spice/dried herbs
• 1/2tbsp citrus rind

Then it's simply mix it all together in the coffee grinder.  It also lasts forever thanks to salt's natural preservative qualities.  

My favourite is rosemary and lemon salt.  It's like a little taste of heaven when sprinkled on some home baked potato chips ('fries' for my Nth American friends).

I do have an emergency commercial rosemary sea salt flake by Falksalt.  Which looks a bit like fish food but tastes divine. Must be my Swedish roots that make me love it so.  Kind of why I like smorgasboards, gravad lax, ABBA, and Greta Garbo movies.

(I really want these salt and pepper shakers from here)

Cheers
Michelle :)

And what would any discussion about salt be without a classic Salt-N-Pepa tune.

The Great Escape

Just another quick post to let everyone know I'm out of hospital and back home.  Unfortunately, my plan to have a fully functioning gut and butthole was simply a flight of fancy and I am still sick as a dog.  (My plan to be ANTMs oldest, most wrinkled supermodel, is however going a treat, and I may be just a kilo or two off rocking skeletal chic).

It has really been quite an eventful time in my life, thanks to Bob's fickle nature. Highlights have included:

• I did win a battle of wits with Nurse Ratched (I will have my lemonade biatch!).  
• I've been violated yet again, by a suspiciously cheerful man with a variety of snake like cameras.  
• And have reported on the frequency, shape, size, consistency, colour and odour of my excretions to every person within a five mile radius of my hospital room.  

Ah dignity, I feel I may have misplaced you somewhere between the thumb-sized poo collection jar of stupidity and having to brace for a surprise enema.

"How many times can this woman talk about her busted gut and her need for special ed classes to learn how to poo?", I hear you ask.  Well many many times apparently.  Lucky you, dear reader.

Actually, what's even luckier is that my piss poor excuse for a body continues to fall apart at the seams so I am too exhausted to do much of a post (or breathe, or stand, or shower, or....), so you'll have to wait for the next episode in the exciting adventures of my bowel.

I will leave you with a fabulous post from one truly lovely Elly Lou of BugginWord fame who made my day by dedicating her weekly uke tune to me.  I may have alternately laughed hysterically and sobbed uncontrollably throughout, but mostly it just made me smile.  (PS I am also happy to take that bottle of wine, I'll even wait to share till after Paul's arrival, MFBT baby :))



A huge thank you to everyone who has commented, emailed, tweeted and FBed me over the past few weeks.  It means more than you could know, and has helped to keep me smiling through what I will have to admit has been and continues to be, a rather rough patch on many levels.

Michelle :)

The Machine That Goes Ping

Just a quicky to let you all know I've been admitted to hospital so probably wont be on here for a while.  I have attempted to do a delayed post, actually tried it before admission, so that may or may not come up.  Bob has kicked my butt big time.  At this point not sure when I'll have my freedom again.  At least I'm on day 3 of continuous fluids so I feel a little more alive.  Though having the machine that goes ping go off all through the night if I bend my arm is not conducive to rest.  Fingers crossed I'll be out in a few days, with some answers and solutions.

Till then, take it easy.
Michelle

One day.

There was a thread on one of the Bob forums I read, that posed the question, " If you could be given ONE day without dysautonomia, what would you do?" It's the sickie equivalent of "what would you do if you won lotto?" but with more answers relating to number twos than holidays to Europe.

It's not really a question that I have thought about, especially not in recent years.  Initially, I was still viewing the world through delusional rose-coloured glasses which told me that recovery was a possibility.  Now, I'm resigned to the fact that it's not going to get better, and, after my Uberneuro visit, that my current state should be viewed as my glory days, as its only going to get worse.  Good lord, that sounds so doom and gloom.  And frankly I'm not ready to process, let alone write about that in any deep and mature fashion.  Bring back denial dammit, it's my favourite of all the coping mechanisms.

Going to my happy place.  

Going to my happy place.  

Going to my happy place.

Ahhhh.......happy place.

Where were we?

It's actually taken me a while to think about what I would do with a day of complete health.  Part of me feels like I should say that I would spend it doing things with my family, because that is the PC answer these days.  Not knocking those for who that is their hearts desire, but for me I'd be lying.  I love my family, I do, but I focus every available shred of energy on them, every day.  Don't get me wrong, I don't begrudge that in any way.  I do it by choice and because I love them.  But should that one day ever arrive I have other plans. 

I would be independent Michelle once more.

I would put on my Dorothy Shoes and favourite green dress, and head into the city.

I would drive the whole 45mins, by myself.

I wouldn't plan for loo or puke stops.  I wouldn't worry that I would get into town and have to turn back.  I would drive without considering any of those issues.

I would wander up and down the many arcades in the CBD, in my inappropriate footware.  

I would savour every blister and would love that initial painful surge of blood back into my feet, when I removed them at the end of the day.

I would try on overly priced clothes in the boutiques.

I would take time to enjoy the beauty of the Block Arcade.

I would sit in a little cafe in an alleyway, drinking hot, rich espressos, and simple watch the world go by.

I would eat tapas and slices of wondrously rich cakes.

I would walk to the gallery and wander through the exhibits.

I would stand on the Prince's Bridge over the Yarra River and watch the boats float by.

I would enjoy the hustle and the bustle, the smells, and sounds of the city.  

I would walk down to China Town and eat Yum Cha and marvel at the glorious golden ducks hanging in the windows.

I would lie, flat on my back, in the Botanic Gardens and watch the clouds scoot over head.

I would have small talk with the lady in line at the coffee stand.  The weather, the crowds, who will win the footy.  No talk of canes or illness.

I would sit in St Paul's Cathedral and soak in the silence, a world removed from the city sounds that surround it.

I would sit in a little restaurant in Collins St.  Eating a meal composed completely of entrees.  My table close to the window to watch the people and the lights roll past.

I would watch the seagulls fly around the spire of The Arts Centre, deluded by the bright lights to think it was still day.

I would stand in front of Her Majesty's Theater and marvel at her beauty in the soft glow of the lights.

I would wander back to my car, my step light and my heart full.

I would drive myself home inhaling the beauty of the string of tail lights strung out before me.

I would open up the windows and let the cool air rush in and tangle my hair.

I would skip up the steps at home, two at a time.

I would snuggle on the couch with my kids and my husband and tell them about my day.

And I would breathe.

I would be normal.

I would just be.

That would be my perfect day.  

No contingencies. No sickness. No dependence.

That's what I would do with my one day.  What would you do with yours?

Cheers

Michelle :)