Vlogging live from Crazytown

In a moment of insanity I thought that a vlog would be easier to do than a blog post. Rambling at a camera surely has to be easier than trying to combine thinking and typing, right?

Note to self: don't listen to yourself when the dumb is strong. Also avoid playing with sharp objects, hide all hair scissors and don't go near the stove. And for the love of God don't go to the vet and see the cute pictures of the kittens that need a new home. They are like soft furry crack and you come damn close to falling off the wagon.

Anyhoo. Here's the rambling, slurring result of about 6 billion takes. Enjoy.



Alternatively I give you Kate Miller-Heidke's fabulous Facebook Song (does contain swearing)


Cheers
Michelle :)

And yet another shameless plug for votes.
 

Frak you Bob

Well my body is still refusing to play by the rules. Exhaustion is ruling right now and I'd be pretty happy if I could get back to my usual state of death warmed up. I think I have now moved from woe is me to anger after another close call yesterday afternoon.

I was going to subject you all to an interpretative dance to express how I feel right now, but thought this little collection from Battlestar Galactica did sum it up quite well. Plus it requires little effort or coordination on my part. Feel free to add your own angry jazz hands.


Stay tuned tomorrow where I move onto denial. I'm thinking mime may be the way to go with that one.

Michelle

You know you want to ;)

Setbacks.

I know many come here for a moments laughter and respite from the absurdity of life with chronic illness, so I feel like I should add a disclaimer from the start. This isn't one of those posts. I am not shy in discussing the less glamorous sides of the physical aspects of illness so it would be disingenuous of me to shy away from the emotional detritus that also occurs.

I have been much worse this year than others. Though in truth it is longer than that, with the last 4months just a continuation on the previous year's exacerbation. Attempts to fight through it have mostly ended up in simply causing more problems. My presentation remains problematic and more disheartening diagnoses are being raised. Reports come back with words like "marked decline" repeated over and over and I have to admit it's been a struggle to try and keep a stiff upper lip. I am referred to more specialists in the hope that someone, somewhere, will have an epiphany. Not an epiphany about treatments or cures. Just that I may eventually be able to give a clear name to what is causing my body to slowly destroy itself.

I have clarity in some aspects but in many others I am still living in the shadowlands. And this is a difficult land to negotiate. Mostly I can compartmentalise. I focus on the small day-to-day needs and don't plan past the moment. I amuse myself with small things and generally don't register that my life fails to be even remotely similar to that of others my own age. It is certainly a better mode of existing than constantly worrying about the future. But sometimes moments arise and the calm I have so laboured to construct is shoved aside, as if it never existed.

Sunday night brought things to a head once more. After a day of crushing chest pain, worse than I have had in a very long time, and severe tremors, my body went into meltdown. For the first time in a very long time I passed out not once but twice, whilst sitting on the couch. Not even standing. Not even after an arduous day, or sitting in a hot room. No discernible precursor, apart from some gardening the day before. And it was quick. None of the usual lead up that gives me time to sit or lie down and avert full collapse.

There was the shift, as if the world hiccups, that heralds such moments. And then the waves of heat, the nausea, the weakness, the roaring wind in my ears and darkening of vision. There were dinner plates thrown at Mr Grumpy. Pillows shoved to the floor and a frantic attempt to get flat. And then the tears. Those damned tears. Sudden drops in blood pressure can cause tears, but there is also the frustration. The complete lack of control and the instantaneous knowledge that my normal abnormal is likely gone once more.

Add to that the fear it generates in those around me. My children have born witness to my illness from the beginning. I like to delude myself that they are coping well with seeing me like this. That they have found a sense of peace with it all. Anything can become normal if you live with it long enough. But in that moment when I was lying with my feet up the back of the couch, trying to hide the tears streaming down my face under an icepack, I realised how tenuous their comfort was. The fear on their faces and the tremble in the voice, bellies their stoicism. To witness it once was confronting. To see it repeated within the half hour was not what they needed. The reality of my illness was stripped bare before them and there was nothing I could do. To have them both come into my room the next morning to check on me. To tell me it was okay if I couldn't drive them to school. That they were concerned about me passing out at the wheel on the way home. It hits you hard. Such burdens should not be placed on such young shoulders. And the guilt that engenders breaks my heart.

To see Mr Grumpy shaken is perhaps most distressing. He is the strong one. The one who gives me strength when my own is failing. He is generally unphased by my state. But in that moment I realised how much I rely on him and how much he carries with little in the way of complaint. There was realisation that my illness affects him much more than I had ever imagined. And I want to tell him I'm sorry for giving him this burden, even though it was never my choice.

For the first time in a long time I cried myself to sleep. The pain, the fear, the physical and emotional wretchedness that are created in these moments given free reign. I let the little voices that come out in the dark, speak their venom. I hate it, but it is part and parcel of this life of mine. To pretend these moments don't exist is to deny the realities of what it means to be ill.

As I finish typing I wonder whether 'Portents' would be a better title. As much as I try to remain positive I have to wonder if this is just another sign of things to come. It is hard to not get disheartened when improvements are only measured by the a slight decrease in symptoms after yet another spike. When the only symptom that has been well controlled has risen not once but three times in less than a month. That the permanent pain in my left leg has now spread to my left arm. Such that both now feel like someone has taken a crow bar to the bone. And yet conversely, I burn my wrist on steam and don't feel it, and can poke the large black bruise on my arm with impunity as the dead nerves no longer register the sensation.

Where for the first time in a long time I feel like I did right at the beginning, before a diagnosis and before medications. It's a scary place to be and not one I truly want to face, but in reality must. If I hide what I am feeling not just from the outside world, but from myself, it will devour me. If I tell others that to admit the negative aspects of this illness is both courageous and freeing, how can I not do it myself?

There is catharsis in truth, no matter how ugly and scary it may be.

Michelle

For those who don't know I am in the running for the 2012 Best Australian Blogs Competition. If you'd like to vote for me (though after the depressing purge above I understand if you don't) click on the icon below. There are many other fantastic Australian blogs in the running so you can always send a vote their way.

Because Hate is NOT Hilarious

"As soon as one of those handicapped people wants to park a car they don't want to be treated 'like everybody else' anymore. Well, here at the group to revoke handicapped parking permits we say: "May every man, woman, child, and retard, be treated equally."

Do they really need it? If they're so messed up they can't drive, then why doesn't the person they're with just drop them off and find a fucking spot? If they are able to drive, but use a wheelchair then there's absolutely no need for a close spot - they're on wheels. a convenience that's gonna get them there easily and faster anyway. Now for those who are just so weak and tired that they aren't able to drive and have too much pride to get a wheel chair - I say stay home! You've probably got somebody catering to your every need there, too! Why do you feel you need to get that kind of attention when you leave the house as well?"

Hilarious, right? That's what creator of The Facebook group, Group to Revoke Handicapped Parking Permits wants you to believe. According to the author of this passage this group is, in her words, "a joke page. and a pro-equality page". 
The apparent hilarity continues with the group's Call to Arms:

"FIGHT DISCRIMINATION!
Actions to show your support:
1- get out there and send in a photo of yourself 'illegally' parking in a handicapped spot, then post it accordingly;
2- steal a handicapped placard from a car;
3- remove any 'handicapped parking only' sign you possibly can; and, finally,
4- flip off handicapped people in the name of equality!"

Subsequent comments on the group's page demonstrate the usual response to criticisms of such hate speech. There are cries of equality, that the able-bodied community are the ones being discriminated against, that the disabled are essentially a lazy and privileged group, and the final justification, that the disabled are overly sensitive and have no sense of humour. Such responses are predictable in their lack of originality and are the usual province of those using Hate 101 to support their views. So common is their usage that word 'handicapped' could easily be replaced by 'GLBT', 'women', or different ethnic and religious groups.

These groups follow the same scripts each time. They fail to own their own language and beliefs. They show no empathy for the groups they disparage, and portray themselves as the 'true' victims.

What they forget is that they may have the right to speak the words, but they cannot do so with impunity. Rights come with responsibilities and, with consequences. This group is not simply voicing their misguided belief that they are somehow victimised by those with disabilities, they are openly encouraging criminal behaviour, including theft based solely on a person's level of functioning.  This is hate pure and simple.

The fact that they cannot see the reality of their behaviour is not surprising. And I have no desire to try and reason with those of this mindset. Facebook has failed to remove this group despite multiple reports. It has even responded to one complainant stating,"After reviewing your report, we were not able to confirm that the specific group you reported violates Facebook's Statement of Rights and Responsibilities".

This is as equally disturbing as the group itself. That Facebook will remove a picture of a breastfeeding baby, a natural and frankly inoffensive act, and yet will not remove a group that advocates crimes against a specific group and justifies these actions on the grounds of humour and equality, is appalling. Failure to sanction or remove the group or those like it, gives tacit approval to the views espoused.

Sadly this group is but one of many, and a disturbing trend that perceives the disabled as lazy and somehow the recipient of preferential treatment, and in turn, that the wider community is therefore being discriminated against. Disabled parking permits seem to attract the ire of many. There are many willing to abuse users for not looking disabled enough, or the repugnant and cowardly who leave anonymous notes on the cars of users. There are those who park in the designated bays because there need overrides that of anyone else. Or the more passive-aggressive who park so close to cars in the bays that the user can no longer fit their wheelchair or walker to access their vehicle.

There is nothing funny about this group, or the views they espouse. They may be small in number, but the hurt and anger they provoke is large. They do represent a segment of the population who also rail against programs such as language education for new immigrants and healthcare and housing assistance for the poor. They feel that they are somehow missing out on their share and fail to recognise that the groups they despise are not granted equal access to the world at large. That these groups by virtue of their disability, sexuality, socio-economic status, gender, or language, are hardly brought onto an equal footing with the wider, supposedly, 'oppressed' society, even with small programs such as disabled parking permits. 

It saddens me that those who have added their names to groups such as this, feel that to boost their own self-worth they must denigrate others. That they create an imagined disadvantage for themselves and yet cannot see the irony in denying the disadvantage of others. That they lack the empathy or sense of self that would allow them to review their beliefs and if not change them, at least acknowledge that their beliefs and actions may cause harm to others.

Small or large, these groups need to be called to account as do those who lend their name or support to them. The Internet is not a Wild West where anything goes. It is not okay, and in some cases constitutes a criminal offence, to insult or actively encourage criminal behaviour against a specific group in the community. Humour is not an excuse. Nor is an imagined sense of discrimination or an inflated sense of entitlement. Hate in any form should not be tolerated.

It is easy and seductive to hate others, as it diverts a person from truly looking at their own failings.

Update: Thankfully Facebook has now reversed it's decision and the site has been removed. Thank you to everyone who took the time to report this group.

Michelle

To Pee or Not to Pee: Desmopressin

(Note: As always I am not offering medical advice of any sort, and not recommending any treatments.  A brain fogged woman sitting on her couch in her flannelette pjs, taping away on a keyboard, whilst binging on hotcross buns and Easter eggs, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)

Those who have been reading this blog for a few years will know the frustrating journey I've been on trying to find a pharmacological cocktail that would help tame Bob. Some may recall the joy of Mestinon (here, here, here, here, here and here) which left me communing with my porcelain lover for weeks on end. Or Midodrine (here and here) which left me thinking I was going to stroke out or have a heart attack from the excruciating pain. It's a story played out for Bobettes world wide.

Whilst there is a general group of medications used to treat symptoms it is still a case of trial and error. What can be a godsend for one person, can be evil incarnate for another. Add in that we tend to be a sensitive bunch when it comes to tolerating medications, with many only tolerating paediatric doses, and it's one big funfest.

Unless you are one of the blessed few who know the underlying cause of your case, and also hit the jackpot and find your cause is treatable, your only options are to try and manage symptoms as they crop up. I feel like shouting "Once more unto the breach, dear friends, once more*" some days, as a new body part fails and we try to plug the hole with a yet another new med and a good dose of hope and prayer. Overall, the only thing my personal cocktail has been able to treat with any sense of success, is my fainting. Other than that, I am better on meds than off, but only by a small margin.

Last visit with my cardio involved a lengthy discussion about quality of life issues. We are waaaaaay beyond the idea of cure these days. Apart from trying to narrow down and find a cool unpronounceable name for what is causing my overall decline, the rest of my management plan is trying to minimise the excess disability so I can maximise participation in life. And you know what puts a big fat dampner on participating in life? Needing to pee like a race horse, every 3 nanoseconds.

(I know, I know, yet another TMI post).

I'm not alone in my frequent peeing issues. It is the bane of many Bobette's lives. We live at extremes, either can't pee, or can't stop peeing. It's a joyous existence. It's bad enough during the day, but during the night, ugh, it's hideous. I already have issues with sleep. Insomnia is another one of the fun symptoms of Bob, and a common lament of patients across the globe. Weeks upon weeks of insomnia, only broken by a few days of coma sleep as your body finally succumbs to it's utter exhaustion. And insomnia is bad enough alone, but if by chance you get the blessed hour straight of shut eye, you really don't want to be woken up by your bodies desperate and unrelenting need to pee.

I've tried all the usual tricks, eg putting the head of the bed up 6 inches, or on 2 bricks. Apart from sliding down the bed in the middle of the night, the only real difference was that it dropped my peeing down from double digits each night to 4-5 times a night. Which is still quite good in the big scheme of things. And by now I've learned to take those little things and stick them in the win column. But really it's still not conducive to living a regular life. Add in that during the day I go through the same process. I drink a glass of water and then within half an hour I am peeing it all out, and then some. Makes remaining hydrated and keeping up your blood volume rather problematic. And each time I have brought this up to my many and varied specialists the answer is always the same, "It's part of the dysautonomia, suck it up".

I am lucky in some respects in that I have a cardio who is willing to listen to me and to consider other options (hence how I found out about Jeff, my mutant left jugular, and was subsequently treated for CCSVI). And this was another time that she came to the table open to discussions. Desmopressin, DDAVP (a biosynthetic form of the pituitary hormone, vasopressin, which increases water reabsorption by reducing the amount of urine produced).  This was a drug I had heard used overseas in Bob patients with peeing issues, but not used here in Oz. In fact, despite my cardio being the leading specialist here, she'd never prescribed it for a patient. After presenting it to her as a potential option, she was open to the idea. This is where I know I am lucky. Too often you hear stories where doctors are reluctant, or in some cases downright hostile, to patients bringing ideas to the table. Damn, us annoying patients daring to advocate for our own health! But after nearly 6yrs together I'm thinking we've established some rapport and respect, and that makes all the difference.

After researching it's use in Bob, I finally got the okay. A quick trip to my GP, and a gallon of bloods later I had my prescription. It's not a cake walk prescription though. There are issues with things like sodium levels and fluid intake. It also interacts with a lot of other meds. Plus I will be having monthly bloods from now on. (I am also having weekly bloods to monitor things like my sodium levels initially, just to make sure I don't have a nasty reaction).

It's a wee little wafer you put under your tongue to dissolve. Which of course always makes me think of this Monty Python skit from The Meaning of Life, " Oh sir... it's only wafer thin". (You can also get a nasal spray and a tablet form).

I will admit to some trepidation in taking that first dose. Last thing I need is to complicate things by stopping peeing altogether or ending up with fluid around my heart. And like every other med, you just don't know how you'll react. Plus there are pesky issues like having to stop drinking 2hrs before taking it and drinking no more than a few sips of water for 8hrs post dose. Which of course all sounds counter-intuitive for Bob, especially when hypovolemia is an issue.

But after taking a big can of harden up I took my first dose before bed, and......

......I'm in love.

I know, crazy lady in the house. But damn it. If Desmopressin was a guy I would totally snog him silly right now.

A whole night and no peeing. None. Not a drop. I'm pretty sure I heard a choir of angels singing when it dawned on me that I hadn't gone to the loo once during the night. And even more excitedly, there was a therapeutic lag. By lunchtime I'd only been twice!. TWICE!!!!! Do you have any idea what that is like? Okay for the regular non-Bob effected readers, you'll be all, "calm down strange lady with a pee fixation. You only went twice, whoopdidoo". But for Bobette's around the world there will be a collective "WHOA". For those of us in the pee like a race horse camp this is akin to solving the Riemann hypothesis. It's damn exciting.

Even stranger, my hr has been stable. None of this tachycardia business. I've been sitting around 55bpm, with maybe a 70 when I stand. After having increasing tachycardia over the last 6-12mths this is quite amazing. Since I've been ill I've also had a headache 24/7. From the moment I wake up to the moment I go to bed there has been head pain, it's unrelenting. But from the morning after that first dose it is dulled. DULLED.

On a practical level, I even managed to get up yesterday morning and make a batch of hotcross buns. I baked. In a hot kitchen. In the morning. This just doesn't happen. mornings have been my worst time of day from the start. Usually, my mornings involve a rigorous program of moaning, lying on the couch and trying not to vomit or pass out. Only punctuated by struggling to lift a pathetic arm to bring the coffee or my tablets to my mouth.

Oh how I love you, little foul tasting wafer of druggy goodness.

Now many aspects of Bob remain unchanged, eg my oscillating blood pressure. And my internal thermostat has been reset to permanent Sahara, with a side of surface of the sun, once more. But I'll take what I can get. And for once in this shit fight of a life, I have had a win.

The question then arises, how much was I peeing out? I mean I knew it was a lot, but I had no idea just how much or that it was making such a huge contribution to my hypovolemia. Given that I am already on a blood volume expander, I must have been filling at least an Olympic sized swimming pool each day with my watery offerings.

So far so good. No noticeable side effects. And if my bloods come back okay I'll continue taking it.

So put that one in the Win Column. Suck it Bob. Suck it!

Michelle :)

Why yes, Desmopressin I think I love you.

* Henry V, Act III, Shakespeare, 1598.

Why do I blog about my health? Wego Health Challenge Day 4

Well as per usual I am behind the 8 ball. This topic was actually Day 4 of the WEGO Health Challenge. And technically it is the 6th here in Oz today. But I'm all about breaking the rules. Walking on the wild side and all that jazz. Or perhaps I'm brain fogged, lazy, and generally apathetic. I'll let you decide.

Day 4 I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping.  (15-20 minute purging of my disorganised and currently pestilence infested mind could be interesting)

The reason I blog about my health changes day-to-day and has definitely fluctuated over time. Initially it was definitely a very egocentric decision. I was out of work, sick as a dog, my life was a mess and I was under a wee bit of stress. Whilst, these days I am much more zen about the whole chronic illness business (well apart from the days I am sobbing into my pillow, cursing the universe and binging on mealy chocolate chips I found up the back of the fridge) initially I was a bit of mess. I know. Shocking right? Because I seem so cool calm and collected these days. Pinup girl for 'Keep Calm and Carry On' and all that.

But no, initially I felt voiceless. As cliche as it sounds, I really had lost me. Chronic illness can do that to you. It can drain you and beat you, until you know longer recognise the person you see in the mirror.

Writing has always been a big part of my life and should have been the natural progression in dealing with what I was facing. But I'd lost so much of myself, in the mire of doctors and tests and ill health, that I hadn't even considered writing as an option. Slowly, and with the encouragement of a fabulous social worker, I started writing once more.

I was very self-conscious about what I wrote. It was a secret. I wrote exactly what I was feeling. No censoring. I had the fear which I think many people experience, that if others saw exactly what I was feeling I would be judged. That they would see me as somehow less. But instead what I found when I shared my initial writing, was support and understanding. And perhaps most importantly, that I wasn't alone. To this day it remains one of my most popular posts, and the one people still email me about at least once a week.

With my blog I found my voice again. I realised it was possible to reach not only other patients, but those who weren't sick. I learnt that my experience is, the experience of not just those with Dysautonomia, but chronic illness in general. Theoretically I knew that from when I was still practising. But now it is a tangible thing and I finally realise the power of the written word to cut down barriers. To illuminate and educate. To create connection and help heal broken spirits. It's one of the ways that social media can truly rock.

One thing I do remember from my working days is that too often we keep thoughts, experiences and emotions to ourselves for fear others will see us as weak or crazy. Patients and their carers would come in and finally 'confess' their big dark secret, fear etched on their faces and screaming in their body language. And without fail it would be something I had heard a thousand times before, and was a completely normal reaction to an abnormal and stressful situation. To tell them that what they felt or experienced was normal brought such a relief. You could see the burden lifting before your eyes.

I think blogging openly about my health has that same result for many.

What we are told by our doctors is often clinical and depersonalised. "You have such and such a diagnosis". "You take these pills". "They may have these effects". "See you in 6 months". What they don't discuss is how not being able to attend your child's football match makes you feel. Or how the indignity of discussing your bowels to all and sundry can leave you feeling drained to your core. They don't tell you about the joy of vomiting in public. Or lying on the floor of a department store till your head stops spinning, and your vision comes back.

They don't tell you how illness feels. And I don't mean the physical sensations of being ill, although they often gloss over that (ie the classic "this will be uncomfortable", which is doctor speak for "it will hurt like hell"). I mean the emotional and psychological consequences of being ill. My bp numbers mean little in the big scheme of things. The fact that they leave me bent of the loo vomiting is what matters. That this will mean I can't go out to coffee with my best friend once more is what matters. That my social life is slowly decaying just like my body is what matters. These are the things that matter to those living with various chronic illnesses. And these are the things that are not often discussed.

For many, we go to speak about these issues and we are told, "to not give up", "to have hope", "at least it's not.....". Those who aren't sick mistake the voicing of the negative as somehow giving up. That we need to be fixed. That somehow our thoughts are wrong. When in reality we are just venting. We are not asking for solutions. Just a compassionate ear to listen. A moment of your time to say "gee that is shit".

Here on the blog it's my forum to discuss the undiscussable. I write it, put it out there and walk away. I don't have to listen to those who don't understand, and frankly I don't care to. And for those who do understand only too well, they know they are not alone. That at least one other person in the world gets it.

And if when I blog and I am sarcastic and snarky, and tell jokes about poo and mention all the unmentionables, and break all the rules, and that makes one person laugh, then it's all worth it. To make that next procedure or doctors visit more bearable. To bring a smile when life is so damn hard, makes every keystroke worth the often considerable effort it takes to create.

For me awareness and education are in many ways secondary to making the journey a little lighter for someone else.

That is why I blog about my health, the good, the bad and the downright ugly.

Michelle :)

Every time I hear this it makes me think about running into my old pre-sick/pre-blog self.


Update: and I got a mention in the Week 1 HAWMC Roundup!

Source: Uploaded by user via WEGO on Pinterest

Dear Body

Dear Body,

Can you please get your shit together? You see I had a plan. Well many plans, actually. More than I can count really and you seem hell bent on laying a huge steaming nard on all of them, even the most mundane.

You see after my last little break I was going to get my shit together and come back to blogging all revitalised. Body rested. Mind rested. Soul and spirit put back together with a blob of used Blu-tack and some strategically placed duct tape. (If you've ever watched Myth Busters you know that'll fix it).

But instead of returning triumphant astride my trusty stead, head of my slain dragon held high in my hand, I am bed bound once more. Taken out by a bug that refuses to die. This was not part of the plan, body. And I am not happy with this situation.

You see the regular crap I can handle. Well sort of. Okay, I can rock denial with the best of them. But added crap seems a tad unfair. And added crap in the form of atomic mucus, hacking coughs and sweat that smells like the distilled essence of a thousand gym socks, is really not fair. Or sexy. Poor Mr Grumpy.

The whole mind over matter really doesn't seem to be working too well. I have been using my limited, though hard working, neurons to try and get you back in line and you just keep giving me the middle finger at every opportunity.

I would very much appreciate it if you could stop being a pratt and let me live life, even a little. We don't really have to like each other, but we can still work together. It might even turn out to be mutually advantageous. It's not much to ask really. So please body, can we give peace a chance?

Yours sincerely
Me