#HAWMC Day 6: Letters

Topic: Write a letter to an older you (tell us what age you are writing to!) what do you want to ask yourself? What lesson do you want to remember? 

(source)

Dear 80-year-old Michelle,

First up I want to say “Go You” making it all the way to 80. Who knew you'd make it that far? Not me. Not most of our doctors. Though in reality they really didn't have a clue as to our prognosis and were winging it a lot of the time. Remember the good ones actually felt bad about that. The crap ones just blamed us and put us in the too hard basket. Here's hoping the good ones are rocking on and the bad ones? Well, is it wrong to wish for them liver spots the size of actual livers, bowling ball sized haemorrhoids and dentures that never fit properly and fall out when they go to pee? Does that make us a bad person? Perhaps. After all Billy Joel did say, “only the good die young”, and here we are still having fun storming the castle at 80.

Please tell me we are a completely irreverent granny, complete with bright hair and feather boa pinching the bums of all the young doctors and health care workers who come within reach. If you're not playing AC/DC loudly in your room and doing wheelies in your chair up the hallways of your assisted living facility, I'll be sadly disappointed.

Here's hoping Weirdtown is a choice and not a biological imposition. Lets face it dementia was rife in Dad's family so the odds aren't exactly in our favour. Though if we've managed 80 without a heart attack or stroke thanks to Mum's genes, I'll be pretty stoked.

So the big question. Can we still toilet alone? You and I both know this was always the bridge too far. Can't wipe my own bum, well that was never on our bucket list was it? Mind you if we are at that stage I do hope we have managed to maintain our dignity and snarky sense of humour. We'll need it. And really a bridge too far has become a bridge you crossed with style, over-sharing, and revelling in the discomfort of others, time and again over the years. No doubt you'll offer up your nethers to the wiping staff while telling a bawdy joke or three.

Remember that old guy at work who threw a handful of fragrant bodily offerings our way? Let's not do that, mkay? And unlike the old lady who unbeknownst to us, had removed her highly absorbent underwear and left a less than pleasant trail that splashed up our legs as we walked her down the hallway, lets always keep our lady parts well and truly covered by adult nappy or granny undies. Really, that's just a win for all involved.

Has the neuropathy spread as far as we always feared? Can we still walk? Did all those pharmaceuticals end up ruining our liver and kidneys? We never admitted that one to ourselves did we? We knew the risks but sometimes the benefits such as being able to function, stay upright or just make it through the day were worth it. Surely, by now the country has grown up and brought in compulsory/opt out organ donation so if we need it we wont have to wait years for a replacement.

And what about bionic bodies? If I can't be Wonder Woman I want to be all Bionic Woman, hopefully wearing the same 70's velour tracksuits as Jamie Sommers. Gosh that would solve a lot of our problems. Not so much the cerebral autoregulation issues we have but hey at least it'd be a start. Or have they gone the way of Futurama with heads in a jar. That'd be kinda cool though I'm not sure how my rampant claustrophobia would go with the whole confined in a jar idea. Not to mention the sea sickness from all that slopping around in the jar. Or maybe by then I can Borg it up. It certainly would make an aging Mr Grumpy's day if he ended up with a version of Seven of Nine on his arm.

Really whatever our physical or mental state I just hope we are still living life to the full, finding joy and happiness every day. And don't look back with regret on our life. Yes we were sick. Yes it took a lot and demanded a lot. It challenged us in ways we could never have imagined. But we kept kicking. You and I both know that was partly to spite our body. We were never going to let that sucker get the best of us no matter what it threw our way. We always gave it the best “screw you” we could and I hope we still do.

We learnt a long time ago that strength isn't easy to define. It isn't always about slaying dragons and running into burning buildings.

It's keeping going when you're exhausted and begging for relief.
It's keeping going when the medical system throws up their hands and the answers simply aren't there.
It's keeping going when we feel that all that we are is being lost or changed.
It's keeping going when we are scared and crying into our pillows at night.
It's finding and embracing a moment of joy in the middle of the storm.
It's finding unexpected freedom in what you thought was unending destruction.
It's realising in every end there really is a beginning and new possibilities abound.
It's realising that your old dreams pre-sick were limited by a lack of imagination and self-imposed boundaries.
That living a little or a lot, left of centre can be the most empowering and rewarding gift you can give yourself.
We did all that and more.

And I hope you kept on that path, because it was the right one for us.

And we made it to 80. 80! That's something to be proud of. Keep wearing those Dorothy Slippers and kicking your heels up (just be careful not to do a hip, because you and I both know all these years of Florinef have left us a little short on the whole bone density side of the ledger). Though if you do here's hoping you finally get a Dr Kovac, we are way overdue for a TV-hot doctor to feel us up.

So 80-year-old me I hope you are having a ball and that Mr Grumpy is still the silver fox that rocks your world and that the boys have had a bucket load of kids who you can terrorise when they are forced to visit weird yet cool grandma on the weekend.

Remember that you are only as old as the man that you feel. So get that hug from young hot Dr Kovac as he feels up your busted hip. Slip some tequila in your IV, slip on your fluro support hose and bust out some rocking tunes from your ipod equivalent. If you made it this far you deserve to party like it's (our pre-sick) 1999.

Just remember to be more Betty White and Mirka Morra and less Clint Eastwood in Gran Torino or Tommy Lee Jones in real life, and it should all be good.

Cheers

Your almost-40 self.

#HAWMC Day 3: Wordless Wednesday: Balancing Act

Topic: Post a picture that symbolises your condition and your experiences.

Cheers
Michelle :)

#HAWMC Day 2: Helpful Posts

Topic: Share 3-5 of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed.

When you are newly diagnosed or in the diagnostic process it can be easy to end up overwhelmed by the whole process. Initially you are excited and relieved to finally have a diagnosis. Especially with something like Dysautonomia. In the seven years since I first became ill the story has rarely changed.

Most patients are faced with dismissal and sometimes outright contempt by some medicos. It's all in our heads. How dare we ask for a particular test? We found out about a diagnosis on the Internet? What a joke? Dysautonomia is notoriously difficult to diagnose and few doctors can put the pieces together. Often even following diagnosis there we are faced with doctors that have never heard of the condition or are sceptical of the specialist's conclusion.

Patient's are left feeling adrift and confused and the post-diagnostic high starts to lose some of it's gloss. Being ill, often for a protracted period, with a confusing and complex illness can leave a patient feeling overwhelmed. I know it was the case for me. There have been many ups and downs over the last seven years most of which I have documented here on the blog over the last almost-four years. I tired to think of the things that may have been most helpful for me back then and this is the list I came up with.

5 Tips for the Newly Diagnosed Dysautonomia Patient

Sometimes you just want to know that 1) you're not crazy, 2) you're not alone, 3) it can be scary at times, 4) it's okay to say it sucks, and 5) you're going to be okay.

"....Being ill sucks. Being chronically ill sucks donkey balls. It's hard. It's unglamourous. It stops you from doing all you want to do and changes who you are as a person. I am generally a happy person. I find the funny in the most unfunny of circumstances, but there are times where I just want to look up at the sky and say "WTH Universe?" As humans we have a range of emotions for a reason. Permanently perky is just as destructive as permanently pessimistic. In both cases you are stuffing down your emotions. We are all going to have bad days. The important part is to acknowledge what you are feeling, work through it and move on. If you keep stuffing it down you will reach a point where you explode and find yourself hysterically crying and screaming at your husband because he brought the wrong toilet paper. Which is totally disproportionate to the non-issue of the toilet paper (though in my an unnamed wife's defence, some brands are like sand paper and you really don't want sandpaper going anywhere near your tender parts). But you can only stuff down those emotions so long before they begin to eat you up inside.  It sometimes takes more courage to say it's hard, than to put on a false veneer of happiness....." (3rd October 2012)

Dysautonomia: what you need to know in 5 minutes or less.

Explaining what you've been diagnosed with can be difficult when you don't quite understand it yourself. Sometimes it's handy to have a quick guide to refer to and give to people. This guide also includes a list of organisations that specialise in support, research and awareness of autonomic conditions.

".....Like symptoms and causes, long term outcomes vary. Some patients will recover, especially if younger and if their symptoms began after a virus. Some patients, will have a stable but chronic pattern. Some will have a relapsing remitting profile similar to MS. And yet others will progress over time....." (21th october 2012)

My life with Bob: The ravings of one slightly deranged woman in her mid-thirties living with chronic illness - composed over several long months.

This is my first post. I wrote it back before I started the blog. It chronicles a lot of my early experiences from getting sick, to diagnosis, leaving work, and the all the emotional ups and downs that accompanied those early days all in one neat post.

".....For the most part you can be ill in private but every now and then Bob raises his ugly head in public. I dread these moments. When you’re trying not to throw up or pass out in the local ice cream shop the last thing you need is a gaggle of people asking you if you’re ok. Of course I’m not ok! I’m pasty and sweaty, my head is between my legs and my face is an inch away from an old bandaid, a piece of used chewing gum and a decidedly iffy short curly black hair. I’m using every ounce of concentration not to throw up on your shoes so don’t ask me questions or you’ll wear it. I live in a relatively small community and privacy is a rare privilege. Everyone soon knows you as that weird, pasty, angry woman from the ice cream shop who nearly threw up on their shoes...." (19th July 2009)

Waiting for the storm

One of the hardest parts of this illness is it's unpredictable nature. It can leave you always waiting for the next bad patch and leaving little time for appreciating the good times. This post explains a lot of my philosophy on how to make the most of those good times no matter how big or small they are.

"....You take on the role of plate spinner in a bizarre circus troop.  Constant alert, waiting for the first plate to show a sign of the shakes.  Never knowing which  will be the first to fall.  Rushing from spike to spike in a desperate attempt to keep all in a state of equilibrium.  Failing time and time again, no matter how hard you try or how closely you adhere to the rules.   Fear becomes your permanent state, only the degree ever varies...." (11th August 2010)

Acceptance is not giving up.

This is a hard concept for many. It is often a state of mind that doesn't happen for a long time. There are times where you fight 24/7 and there are times where it is okay to sit back and take a breather. There comes a time where illness can rule your every waking thought and when it can be dealt with, put in it's place so you can move on and enjoy the life you have. Living life is just as important as fighting whatever illness you have otherwise you can miss so much that is good in life.

"....Acceptance is a dirty word for many. But I find it quite liberating. It gives me much needed balance, and I am certainly happier for it. It doesn't mean I've given up, in many ways it means the opposite. It means I have chosen to fight for me. And damn it, I'm worth it...." (17th January 2013) 

So there you go that's my Top 5. I'd be interested to know if these are the 5 posts that my regular and long term readers would pick or if there were others that stood out as being really helpful.

Cheers
Michelle :)

#HAWMC Day 1: Why Do I Write?

About a month ago I had a moment of insanity and signed up for another month of 30 blogs in 30 days for Wegohealth's Health Activist Writer's Month Challenge (HAWMC). Somehow I forgot that last year I exhausted myself as my anal, "You can't beat me!" side came to the fore. I'm starting to think that it's a little like the blogging version of childbirth, where despite the pain, being coated in your own bodily fluids and having the whole class of trainee midwives come in to watch your lady bits be sewn up (okay that last bit may have just been my experience) you still go back for a second child thanks to the meth/hormones that is the new baby high. Or in this case, the satisfaction that I did manage to complete so many blog posts in the last challenge despite a rather rough health patch. It would seem that a dissociative fugue is not always my friend.

So hear I am again, ready to embrace my crazy and my tendency towards masochism, only a couple of days and brain cells, late. Luckily Wegohealth have added that you can pop in some old blogs if you've done it before and some Wordless Wednesday's which do give some breathing room this time around.

So first up (and because I am running late) I'm going to link you up to the post I wrote last year that explains why I write this blog and share my experiences both here and on my Facebook page.

".......Blogging about my health in those early days was about rediscovering and taking ownership, of my voice and my experience. When it comes down to it, if you don't write your story no one else will. And there is no one who knows your story as well as you. Being a patient and being ill can be very disempowering. A paternalistic medical system and a body that seems out of control can rob you of your sense of self. Sometimes, it can be down right scary. But every word I wrote in those early days was another step back on the road to reclaiming me. The very act of sharing my voice with the world was equal parts empowering and pee-in-your-pants scary. Some of those thoughts that go through your mind when you are alone in the dark at 3 am, make you feel like a crazy person. But when you share them you suddenly find that there are others out there having the exact same thoughts and they become far less scary. It's then that you realise that you are in fact a rather normal person living a rather abnormal life........." (1st Novemeber 2012)

Full link can be found at: National Health Blog Post Month: It Begins. Why I write About my health.

I do recommend blogging or at least writing as a means of working through so much of what we go through. It helps to clarify what you are thinking and feeling. And it gives you a chance to share your voice whilst reclaiming your experience. Too often others speak for us. Sometimes this is because we are physically or emotionally unable to advocate for ourselves and sometimes because there is still a paternalistic element in society that infantilises the ill, and speaks for, instead of with, us. You don't have to show anyone what you write. But writing can be an amazing cathartic experience and I can't recommend it highly enough.

Cheers
Michelle :)

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!

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