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.

Sticks and Stones: A response to the New York Times Article, "Ailment Can Steal Youth From the Young"

I tend to shy away from political discussions on this blog.  It's been a very deliberate decision on my part. Privately I have certain political beliefs, and there are issues which are dear to my heart.  But this blog was created as an outlet to process the day-to-day struggles of living with chronic illness.  My own personal therapist in the shape of a keyboard and 'publish post' button.  But of late I have become increasingly frustrated by the portrayal of Dysautonomia in the both the media and peer reviewed medical journals.

A recent article in The New York Times, was heralded as a giant step forward in raising Dysautonomia awareness. A relatively unknown and under recognised disorder, Dysautonomia diagnosis is notoriously difficult, and treatment defined by trial and error. Unfortunately, what began as a great opportunity, has upset many patients. The last few lines in particular,

"Don't let the disease rule you.," Dr. Fischer emphasized. "The messages of how you feel are not reliable. You have to make your mind rule your body".

are as nails on a chalkboard for many of those who live everyday with Dysautonomia.

I will give Dr. Fischer the benefit of the doubt, and believe that his overall intention was to suggest we try to participate in life as much as possible. A course of action known to promote mental health and improve coping mechanisms. Managing stress is important, particularly when your autonomic nervous system (ANS) is already malfunctioning, as it is known that increased stress equals increased symptom severity. But the idea of the mind ruling the body, in a physical disease, simply perpetuates the myth that a) Dysautonomia has a strong psychological component and b) that all we need is a positive attitude. Can I control my blood pressure and heart rate by simply willing it? No. Though I, like many other patients, truly wish I could. But the question arises, would Dr. Fischer say the say such a thing to a person with diabetes or Parkinson's disease? I think not.

This comment comes on top of The Grinch Syndrome controversy, following a publication by prominent researcher, Dr Levine. Dr Levine concluded that all cases of Postural Orthostatic Tachycardia syndrome (POTS, a common form of Dysautonomia) were due to deconditioning and small heart size. His solution, all patients need to follow his exercise program. Those who didn't recover simply didn't exercise enough. All accompanied by the proclamation that he had found a 'Cure'. Whilst the methodological failings of the study, including its overreaching conclusions, are well known, this study persists thanks to Dr Levine's prominent reputation in the field, including his work with NASA. Unfortunately, this study is quoted by many well meaning medical professionals, despite many patients being highly physically active prior to illness and continuing to have normal heart size, long after diagnosis. (This is not negating that exercise is a vital part of the overall treatment of Dysautonomia. But it is not a 'cure' for all, and must be tailored to each individual patient).

It would seem that these practitioners, despite their best intentions, have lost sight of the patients they are supposed to be treating. Naming a disorder after a Dr Seuss character is not cute, it is patronising. Not only that, but this research negates the fact that there are multiple well-recognised forms of POTS and Dysautonomia, all of which have different underlying pathologies. There is not a one sized-fits all diagnosis, or treatment.

Whilst the physiological symptoms of Dysautonomia are difficult to live with, it is the way these impact on a patient's day-to-day life that can be most challenging. Many patients have had, and continue to have, a difficult and demoralising experience. Patients are told that much of what they are experiencing is psychological in nature and continuing illness reflects low motivation. This can be devastating.

Both of these doctors know the stigma attached to Dysautonomia. Many patients have fought for years to finally find the correct diagnosis. During that time they have been told "that it's all in your head", "it's anxiety", or "it's depression". There are helpful comments from family and friends, and not a few medical practitioners, that we "simply need to get out more", "be positive", "exercise", "eat healthy", the list goes on and on. These experiences leave a mark on those who have been through them. For many patients these remarks persist long after diagnosis.

Dismissal and disbelief are part and parcel of Dysautonomia. Heard frequently enough, patients begin to internalise those feelings, even when they know the truth. Patients frequently experience an overwhelming pressure to prove their illness, both to those in their life, and medical professionals. As such, the outrage of patients when comments such as this are published, is understandable.

I know from personal experience, that there are many doctors who are quick to dismiss when they are unable to find a cause for reported symptoms. After describing my symptoms to one General Physician, I was told, “when a woman your age presents with these symptoms it is always in her head”. Thankfully, with a background in Neuropsychology, I knew he had not followed any accepted testing methodology and therefore drew erroneous conclusions. Notwithstanding, I was left deeply upset. That distress turned to anger which spurred me to search further and finally find a doctor who could provide me with a diagnosis that fit the symptoms, and push for appropriate treatments. But I often wonder how many patients simply accept such a diagnosis and blame themselves when they don't get better.

I can push myself to make an appointment in the city, 45 minutes away. But not without extensive planning and preparation. By the time I am home I am exhausted and highly symptomatic. Quality of life becomes a moot point. Life is defined by periods of increased symptomatology punctuated by pushing yourself beyond your limits for a certain event. This hardly reflects an effective treatment option.

Social outings and participation, are vital to mental well-being. It is easy to become so overwhelmed by illness that we catastrophise, and believe we are unable to do anything. Simply leaving the house and all the potential situations that may occur (eg, fainting or vomiting in public) becomes an occasion for increased anxiety. Few patients would deny this. However, in reality a simple outing, for example, going to a cafe, can lead to an exacerbation of symptoms post-event. For many patients, this in turn leads to a lengthy recovery period often measured in days, and for some, weeks.

In psychology there is a phenomenon known as the Primacy and Recency Effect. This theory tells us that people recall the first and last things they are told, with the intervening information recalled with less clarity (regardless of how informative it may be). In the case of this article, most would take away that the patient discussed was very ill, but the fundamental answer to treatment is related to attitude. Which only serves to perpetuate the myth of a psychiatric aetiology. We are also drawn to personally salient information. For patients who have struggled for recognition this conclusion sums up the struggle they have faced, and for many, continue to face. For those who doubt the legitimacy of the disorder, it confirms their pre-existing opinions. Especially coming from an expert in the field.

I am sure that Dr Fischer did not intend to cause harm or distress by his statements. And it may be a question of simply how the journalist chose to frame the discussion. But it behoves medical professionals to stop simplifying complex disorders. Especially, when most will admit that little is known about the mechanisms of the disorder and the ANS as a whole. Additionally, this article only addresses POTS in an adolescent, with a specific identifiable aetiology. Even less is known about those in the older age groups. Questions of treatment, recovery or prognosis are often left unanswered as little to no data exists.

Patients are vulnerable and frequently unable to advocate for themselves. As such we rely on those who are supposed to provide us care, to advocate on our behalf. And that includes thinking about the potential impact of the language they use both in the public domain and medical journals.

Sadly, whilst much of this article is informative and aides in increasing awareness, this comment from a prominent specialist in the field merely serves to perpetuate unhelpful myths. Dysautonomia is a highly complex disorder, varying in aetiology, treatment, severity and impact on functioning. It has clear, measurable physiological and pathological markers. Its impact on patients and their families can be devastating. We need an advocate, not minimisation and simplification. And "make your mind rule your body" does not fulfil that brief. The medical covenant of "First do no harm", is thought a central tenant of medical practise. It is time to apply this practice not only in the treatment of patients in the doctors' rooms, but also the way disorders are discussed in the media.

Michelle

Update: a revised copy of this post was was accepted and published in ABC Ramp Up and arm of the ABC News Network, on 21 Nov 2011.

.....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.

I'm over this sick malarky.

I quit.  Yep that's right, I quit.  I'm over it.  The whole kit and caboodle.  I'm taking my bat and my ball and I'm going home.  I'm outta here baby.  Bob can kiss my ever decreasing arse.

I'm getting a life.  Not that I'm quite sure what that entails.  I may have to Google "getting a life", to see what the answer is.  I do hope it's in dot points as I really can't be arsed reading paragraphs.  A diagram would be nice too, particularly if its of the Venn variety.  And lots of pictures, bright, shiny pictures.  And good tunes.  You can't start on the road to getting a life without a decent soundtrack.

I've realised of late, that I've been sucked back down the Bob rabbit hole.  I'm not even quite sure when it happened, but I'm pretty sure surprise enemas and almost fainting on the loo were involved.   One minute, I had the makings of a life.  Then I looked up from the bathroom floor, and it was Bobtown as far as the eye could see.

The last few months have seen a sharp rise in my decreptitude.  I can admit that now.  Though, my oh so adult fear of "if I say it out loud it will make it true", has gotten in the way.  I am more housebound.  Even short amounts of standing, exercise (and by that I mean walking from the couch to the fridge to grab chocolate), talking, breathing are all exhausting.  My gastric issues are pretty much unchanged.  My ability to drive is now almost non-existent.  I could add in the near permanent pain, head and joint, the constant unrelenting nausea, the increasing weakness, and all the other crap that seems to be piling up.  Frankly, it may be time to simply start stacking my hallways with newspapers and collecting cats.  Because, if one is going to be a shut in, one should do it right.

But I say, "Balls to that!", my friends.  No more.  I'm making my stand.  I'm a gunna get me some normal. even if it kills me, or I end up face planting on an unsuspecting dog.

No more will I be known as Michelle, The Sick. I am going to put on my cape, my Dorothy Shoes, and wear my undies on the outside.  I will become, Michelle, The Slightly Weird But Sort of Normal Woman With A Fondness For Glitter And Zombies.  

Bite me Bob.

My first step is too start a new blog.  Because Eunice (my last remaining brain cell) has nothing else to attend to lately.  And what does a girl with gastric issues blog about?  Why food of course.  It's says, suck it Bob.  Take that, guts.  It also points to my ever increasing insanity.  I may sit on a chair, or the floor, when I cook.  I may burn myself on the stove, or oven, or pot, or....  I may employ the 30sec rule on a way to regular basis.  I may even use my children as slave labour to peel and cut my veg.  But it's still cooking.

It is bare bones at the moment.  Not even a decent header in sight.  I'm not even sure I like the title.  It will be Bob-free.  It'll even be lactose and fructose-free in places.  It is certainly guaranteed to be grammar and spelling-free.

Check it out if you want to be amazed by my culinary delights.  So far I've made, yoghurt, cheese, bread and crumpets.

The Sit Down Cook

(I even take purdy pictures)

But my quest for normality doesn't stop there.  I have plans to put plants in pots.  To break open my dust covered paints and get all arty. I might even go all out and sweep my front steps.  I'm living on the edge baby! The edge of Normaltown.

Michelle :)

Update:  Have changed the name of my food blog to The Sit Down Cook, to reflect the fact that I, like many other Bobettes, can no longer stand to cook.

Apathy

I received a reminder for my now annual breast ultrasound two weeks ago.  For those of you who have read this blog for a while you'll remember that my breasts are demented.  For years now I have been popping out cysts and lumps like a crazy woman.  I had one radiologist tell me my boobs were a garden. I had my GP tell me they are Swiss cheese.  I can feel lumps and bumps.  Big and small.  New and old.

But...

It sits on the table.  Waiting.

I know I have to get it done.
I know I have to become a teaching tool once more at my local radiology office.
I know I have a hope in hell of detecting a new potentially bad lump in a forest full of pretenders.
I know my GP will yell at me yet again for my apathy.

But......

I am over being scanned, poked, probed and examined.
I have had my fill of doctors.
I have had my fill of pills and potions.
I am over being a pharmaceutical guinea pig.
I am over shelling out money hand over fist, for no answers, or solutions.
I have had my fill of bad news.
I have had my fill of no news.
I have had my fill of being unique, unusual, weird, strange, and all the other descriptives that come my way.
I am over being told "I have no idea", "there is nothing I can do", "I've never seen that".

I am over new diagnoses.
I am over no diagnoses 
I am over new symptoms.
I am over the word 'idiopathic', the fall back for doctors who have given up.

I am over a diary filled with nothing but doctors appointments.

I am tired.

I need a break.

But....

I will call the radiology office.
I will make the appointment.
I will call my GP.
And, I will make that appointment.
And I will take my medicine.

Because...

Just in case.
You never know.
Maybe this time.
What if?

And then apathy wins.
But I wont.

(find out more here)

*Update: It can be hard to maintain the medical momentum when you are chronically ill.  But sometimes you just have to suck it up and do it. So I made the call, and am now booked in to be scanned.