Dear Doctors.

Dear Doctors,

A young patient presents at your ER/clinic/rooms, with unexplained symptoms of chest pain and fainting.

What is you first response?

I'd hope that you'd investigate.

I'd hope that you would take it seriously.

I'd hope that you'd reassure your patient that you believe them, and will do your best to help them.

But sadly, this response seems to be the exception, and not the rule.

"You're just anxious."

"You're just depressed."

"You're too young for [insert illness of choice]."

"You just need to get out more."

"You're wasting our time."

This is what far too many patients encounter.

Do you know that your response in that moment can influence that patient's relationship with the medical system for years to come?

Do you know that your response can make or break that person's sense of self?

Do you know we come to you because we are scared?

Do you know we come to you because we trust that you can help us?

Do you know that you can crush that trust with an uncaring word or flippant attitude?

Do you know that rare, doesn't mean non-existent?

Do you know the tears we cry and anger we feel when we are casually and sometimes callously dismissed because you could not find the problem after some basic bloods and a quick check of our vitals?

Do you know how we second guess ourselves and avoid seeking medical care in the years to come because maybe you are right, and it is in our heads?

Do you know we now no longer trust the medical system because you, the expert, you who we imbue with hope and power, told us we were crazy or wasting their time?

Do you know many will fail to get the treatment they need because you made them feel like a hypochondriac?

Do you know many will lose jobs, relationships, lives, because they will no longer seek care for their symptoms for fear of dismissal or ridicule?

Do you know that even when we find a doctor who can put the pieces together, we are hampered by that one exchange we had with you?

Do you know that we mistrust the compassion and understanding we receive from that doctor because our trust was dashed by your indifference and disregard?

Do you know that we will spend years trying to overcome the damage you created in that one exchange?

Do you realise the power you have?

We come to you scared.

We come to you with trust.

We come to you with hope.

We want to believe.

We want to feel better.

You may not understand our condition.

You may be frustrated by a lack of clear results.

You may be overworked and tired.

But do not forget your power.

Do not forget that you promised to first do no harm.

Do not forget you are dealing with a person, not a bed number.

Do not forget that in that moment we are vulnerable.

A kind word.

Genuine concern.

A simple admission that you don't know.

Will build trust.

Will build hope.

See us as people.

See that there are real world, long-term consequences to how you interact with those who seek your care.

You have the power to make or break a person's entire experience with the medical system.

Remember that before you speak with your next patient and use your power well.

Michelle

(I've woken up to a bunch of emails asking if people can print this post out and give to their local doctors, hospitals, medical schools etc. Rather than reply to all and because I am time and energy poor at the moment, the answer is YES feel free to copy and share. All I ask is that there is a link back to the blog URL and authorship noted.)

A mantra for living with chronic illness.

(Being a little left of centre does help in dealing with chronic illness. 

Source)

I'm always being asked what are my main tips for coping with a chronic illness? It's hard to really verbalise them all as they are still developing. I know if asked in another month they would be more refined and would reflect whatever I had encountered in the intervening period.

But tonight, as I spend yet another exciting Saturday night lying here in bed trying to distract myself from the razor blades that I apparently ate for dinner, and I wait for the pain meds to kick in, I thought I would try and sum it up. My mantra goes a little something like this.

Embrace life. Focus on living. Focus on joy. Don't restrict yourself to old ideals and images. Your world has changed, it may or may not change back. Just embrace it and let it show you new paths and new possibilities. 

Know you have the strength to survive the ups and downs. You've done it before and you'll do it again. You cannot always change your circumstances but you can change your reactions to what happens. 

I wont lie, it's hard work some days. There will be tears and there will be times where it feels overwhelming and hopeless. But those times will pass. There will be the moment of respite when you can finally breathe again. It's remembering to grasp those moments with both hands and to let yourself believe and rejoice in them, whether they last a few months or a few minutes. 

It's knowing it's okay to let others give us their strength when your well has run dry. And that above all, you are not alone in this, no matter the lies your illnesses tell you. There is someone, somewhere going through what you are going through and feeling what you are feeling. 

You're not weird or weak or any of the things you tell yourself in the darkness that is 3am. You are beautiful and glorious and strong. You are Boadicea in comfy pjs and slippers. Show yourself compassion and love, and know you are worthy. Remember that, and you'll make it through today, and tomorrow, and the next day, and the day after that. 

You define who you are, not your illness. You just need to believe in yourself. Because that you is magnificent. And that you is unstoppable. 

Michelle :)

IV Saline Weeks 2 & 3.

(Well, who doesn't do a hospital loo selfie? It's a looooong day.)

Well here I am back at the Day Procedures Unit (DPU) for my next hit of juice (IV Saline). I'm a wee bit tired and washed out today so looking forward to that precious litre of fluids. I think I've been trying to make the most of any benefit from the IV and pushed a little too far. But you get that. At least no one can accuse me of not being motivated.

As promised my update as to how it's all going. The big question being “is it worth it?” Worth it for the hassle of finding a doctor who'll prescribe the procedure.? Worth the hassle of finding a place willing to do it? Worth the four-plus, hours it takes to be infused? Worth that long day spent in the hospital? Worth being exposed to the Petrie dish that is the hospital, when your immune system is not exactly in great shape? Worth being jabbed with a needle weekly as I'm not a candidate for PICC or port?

So far, for me, the answer is yes.

I wont say it's not an exhausting day. And there is the pre-prep the day before and the morning of. Tuesday is spent making sure I try and rest up and am anal about my diet so to manage my gastric issues as best as possible for the next day. Wednesday is all about trying to get myself together in the morning, when morning is always my worst time of the day. Organising transport to and from the hospital; taxis are hit and miss where I live in the boonies outside Melbourne. Though this week the taxi driver was not only on time, but also opened the door for me, helped me with my bags, and was an all round friendly guy. Which is always nice. Though nearly $13 for a 5min trip still makes me gasp. These are all factors to be considered as they take a substantial amount of energy. I usually leave home around 10:30 and get home around 5pm. So it all makes for a really long day.

(Me and all my friends in the waiting room.)

(Either it's a quiet day in the DPU, or my BO's gotten really bad.)

(Today's infusion ensemble includes violet compression stockings and new boots.)

Today I encountered what will no doubt be an ongoing issue. The fun game of find-the-vein. After searching around I am back with old faithful in the crook of my right arm. It seems all the others have fled. Sadly, old faithful is getting a bit sore as he's also the one that tends to be used for my monthly bloods. But the lovely nurse managed to get that little sucker in there and I am juiced up once more.

(Old faithful was a tad sore by the end.)

My bp has been swinging a bit the last two infusions, although the width of the swing is far smaller than normal. First time there was little swing and a pleasant 120/69 hr 65 for most of the infusion. Now I am doing the old 115/79 hr 69 to 97/56 hr 65 to 138/90, hr 68. Much smaller swings than I am used to where it can normally be anything from 70/50 to 165/115 minute to minute. I'm pretty stoked with my pulse pressures which mean that even at 97/56 I still feel pretty great. Though the staff keep asking if I am dizzy. It's strange to see them get worried as it's so much a normal part of life. But it does mean I get to raise a bit more awareness as I explain the joys of Dysautonomia. My hr has remained decent so I'm pretty happy and I've had minimal bradycardia during the intervening days between infusions.

I've been doing physio and OT the two days immediately post infusion to capitalise on any feelings of wellness I have thanks to a more stable bp and hr. Last week was a bit of a shamozzel as in my brain fog I booked OT and physio on the same day, with OT at 9am. Sometimes my own stupidity amazes me. Needless to say the OT and physio took pity on my patheticness. Plans to watch me cook and garden were shelved for the day in favour of sitting down upper limb exercises to hopefully improve my arms of patheticness and discussions on pacing, appropriate mobility aides and of course the look of “what the?” when I mentioned I didn't have a disabled parking permit. I have to see my GP at the one month mark for review so I'll add that to my list of things to discuss. It would definitely make Mr Grumpy happy if I did get one as I'm always getting lectures on my stubbornness about the issue. Tomorrow at the reasonable hour of 1:30pm I will be making hotcross buns under the watchful eye of my lovely OT whilst she points out all the ways I make it hard on myself thanks to stubbornness. 

Physio was the eye opener. Deep down you know how much you've declined but you delude yourself that you're not really that bad. Then after assessment you are handed a program which only allows for 2x30sec bursts on the minicycle, with no resistance, and you realise just how bad your physical abilities have become. And the reality is, as much as I want to believe otherwise, she is completely right. By the time I do her program twice a day and the OT upper limb program 3 times a day I am beyond exhausted. I am rocking a program that overall is less than what we used to give my elderly patients back when I was working in rehab. Once more I am confronted with the knowledge that Frank and Beryl my old grey-haired nemeses from my original physio class could still kick my arse, hip replacement and triple-bypass be damned.

And my body is protesting my attempts at improvement at every opportunity. The bone pain and zapping in my left leg have gone up about 80%. I am in pretty constant pain now, even my right wrist feels like it has been broken. All from exercises a new born kitten could do with ease. That's a little confronting when you're not quite 40. Once more it's the good old rock and a hard place. So when I see my OT and PT over the next two days I guess we'll be reviewing things again. At this rate breathing and forcing a fart will be about the only exercise I am capable of.

I am still feeling better overall since I started the regular infusions. The last two days before the next infusion are still rough though. My kids and Mr Grumpy just look at me and shake their heads as stroke face hits and my body goes into cascade failure once more. But those first couple of days post IV are quite golden compared to my norm. As my kids told me last week I actually have colour in my face and more importantly I am less grumpy and can take the piss better. I've also managed to do a couple of things around the house that I've been putting off due to my health. My reading corner is finally done and I am quite stoked. Once more that may not be quite the variables my doctors are interested in, but from a quality of life perspective it's pretty good.

I did note this morning as I sat in the chair waiting for my infusion that stroke face was beginning once more as my left eye and left side of my mouth began to droop. Now over half way through my bag of juice it's beginning to lift and go back to normal. Surely that means something. I do wonder about the connection between my neurological and blood volume issues, especially the difference I feel in the facial paraesthesia after the infusion. It seems hypoperfusion is a bit more of a pesky problem than I have previously realised.

(Pre (L) and post (R) IV saline. Pre: stroke-face beginning, I always notice my left eye more but my mouth was also starting to drop, was feeling a tad worse for wear. Post: stroke face mostly gone though still looking pretty tired. At least I can open my eyes fully.)

Once more I'll have to say the whole process is made much easier by great and friendly staff at both the Day Surgery Unit and the Community Rehab Program. It makes such a difference when the staff are nice. Having been to other hospitals where I was confronted with nursing staff who were more akin to Nurse Ratched from One Flew Over the Cuckoo's Nest, I really appreciate the staff at my local hospital. As most patients quickly discover bedside manner can make or break an experience, especially when you are really unwell or distressed. There are a few hospitals around town who could take a leaf out of my local DSU and CRPs book.

So there you go, that's how it's all going. Pretty tired right about now. Once I've finished writing this I think I might take a little nanna nap in my recliner whilst the last 200mls drips into my arm.

Cheers

Michelle :)

A little bit of my relax mix that gets me through the 4hrs. One of my favourites from PJ Harvey and Tom Yorke, This mess we're in.

#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.

Perspective courtesy of the Naked Mole-Rat and an ever so helpful email.

Well yes lovely emailer, 

Thank you for reminding me to get some perspective and that it really could be much worse. Your witty and elegant reminder has changed my whole perspective on life. When I next fall into my self-pitying ways I will remind myself that others do indeed have it worse. I mean at least I am not a Naked Mole Rat. Now that would indeed be much worse than my present situation. Phew. Dodged a bullet right there. I will now rejoice in my blessed and fortunate existence. Thanks again for helping me to pull my head out of my arse. 

You're tops 
Michelle xx

Pain Pain Go Away: Lyrica

(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.)

Pain has been my constant companion for many years now. It took me a while to work that out as over my last almost-40 years it became the white noise of my life. But of late the pain, or my ability to shut it out, has become worse. And neuropathic pain in particular has asserted itself.

Last year after my week long in-hospital investigations I was given low dose EnDep to try. At that point I was being tasered in my left foot nearly constantly, with the occasional super shock that would make me jump and cry out in pain.

“Have a sural nerve biopsy” they said. “It'll be fine”, they said. “We do it every day”, they said. “Sure there are some risks involved, but that's sooo rare”, they said. Pity that Rare is my middle name. Just like Special, Unique, Confounding and Intriguing.

Now six months later the good old sural nerve biopsy has left me with a traumatic neuroma (again not a common occurrence, but who wants to be like everyone else?). This little fella adds constant burning pain at the site of the incision and below to my mix. I am told that part of this is phantom pain (just like when a limb is removed) as the nerve itself has actually been removed. Pity the trauma of the surgery, subsequent infections, repeatedly splitting wound etc all got together to create new pain pathways in my brain. Fun times. Trying to undo or quiet these pathways is going to be my new goal.

To give you an idea of the level of pain for those who are lucky enough to not experience neuropathic pain. If you were to get road rash, dip the area in lava and then rub broken glass into the wound. That would come sort of close.

Luckily, I do have some variation in the intensity of the pain so it's not always at that level. But there are many a days that the breeze from a fan can bring a tear to my eye. Unfortunately, this isn't my only patch of burning or zapping, just one of the more recent additions. I remember a few years back when it started in my right toes. My now deceased cat sat next to me with her soft fur touching the tips of my toes and it brought tears to my eyes and a faint whimper to my lips. Not a lot has changed since that time, although the house no longer smells like cat pee since Monty went to the big cat scratcher in the sky. (I loved her but incontinence and dementia in a cat are not exactly endearing attributes.)

Along with distraction and desensitisation techniques (more painting and blogging and rubbing moisturiser into the site whilst trying not to scream) I am going to be trying Lyrica (Pregabalin). Luckily this year Lyrica came on the Pharmaceutical Benefits Scheme (PBS) here in Australia and I was a) finally able to afford it and b) my neurologist was finally happy for me to try it at a low dose with an option to increase (I am a sensitive soul when it comes to medications). 

Lyrica is an anticonvulsant used in the treatment of epilepsy, but is also used in the treatment of neuropathic pain with quite a lot of success. It's been around here in Australia for a while, but the cost has been prohibitive till now.

Like all medications Lyrica has side effects (fun things like suicidal ideation get a lot of paragraphs devoted to them on the MIMS sheet that came from my pharmacist. Not disconcerting in the slightest, no, no way, no how, hmmmmm......). I'm however, choosing to focus on the two that get the most air time on the patient forums: weight gain and drowsiness, which I am really hoping to experience. So far no dice with either but I am able to increase my dose so I am hoping that I'll soon get the magical trifecta of:

Pain Management,

Weight Gain, and

Sleep.

Wouldn't that be lovely?

(NB: I did check in the mirror again tonight and still my thighs refuse to touch. Maybe it's time to also double my dose of hotcross buns and Lindt bunnies. Come on weight gain!) 

Recently I read an article where a patient with Guillain-Barre' Syndrome (GBS) and consequent severe Dysautonomia was given Lyrica (six times my starter dose, though) and it attenuated all her Dysautonomia symptoms. How fabulous would that be for an outcome? Now I'm not going to get greedy or overly optimistic and add this to my list of potentials but lets just say if that were to occur I would be one happy little camper.

So here's hoping.

It would also be kinda nice if the the zaps up my legs, the bone pain in my left leg and right hip, the patch that feels like raw flesh on my back or the burning on my thighs would finally be controlled. Or if when Mr Grumpy touches me I don't grimace or wince. 'Cause that's kinda a passion killer.

It's not that much to ask really.

So fingers crossed. Besides as one of my old work friends suggested, if all else fails the name Lyrica does bring to mind some sort of Dysautonomia musical. So I could always write one of those. Purple compression stockings  and jazz hands would, of course, be compulsory. And there may be some spirit fingers action. And some sort of fan dance for our heat intolerant bodies. And a salty sea shanty. And......

Cheers

Michelle :)

How could I go past some classic Johnny Cougar/John Mellancamp/John Cougar Mellancamp/John whateverhislatestincarnation, on a post about pain.

#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 :)

IV Saline Update: It's happening!!!!!!!!

So much can change in a few days. One minute you're busy hating on the injustices of the medical system, the universe and the idiots who cancelled Firefly after one season (okay, that may have been a while ago but some grudges are worth keeping). And the next you are sitting in the Day Procedures Unit at your local hospital with an IV stuck in your arm sucking down some sweet, sweet saline.

Last Monday I was busy pouting and stamping my feet when I had a phone call from my GP. I could tell from the outset that something was up as she was clearly excited. You see, after much hard work on her behalf, including three months of phone calls and searching, she'd finally organised weekly IV Saline through my local hospital. And not only that. She had also managed to get me back into the Community Rehabilitation Program who are happy to come to my house for physiotherapy and occupational therapy each week on the day after my infusion. That's what I call "Winning!"

Now I was rather excited by this news to say the least. But a part of me was also sceptical as I had no tangible paperwork to prove that it was true, just my GP's phone call. Too often over the last seven years  I have allowed myself to get excited about a potential treatment or appointment only to have it ripped away at the last minute, or end up stuck in a maze of soul destroying red tape and inevitable disappointment. Yet, Tuesday there was a call from the Day Procedures Unit to say they were expecting me Wednesday morning. Could it really be true?

Wednesday morning rocked around 36C and blustery, and I was of course sick as a dog, having travelled into town to see my neurologist the day before. But I wasn't going to let my recalcitrant body get in the way. So I sat there on the loo clutching my puke bag willing my body into submission. I managed to get dressed and organize a taxi and drag my protesting body into the hospital.

Of course in my brain fogged, vomit-suppressing, cheek-clenching state I managed to get the taxi driver to drop me off at the wrong entrance. Which of course meant that I had to walk/stumble uphill in the heat to the next entrance. Thanks to all those people who just stared at me, or whispered to their companions, rather than offering assistance or even asking if I was okay, as I shuffled and weaved my way up the steep driveway with my cane. Go community spirit!

But by 11am I was there in the blessed cool AC of the hospital, filling in the 28 million page form which of course never has enough space for all my meds. Whilst the couple across from me who were apparently there for hearing tests, let their bub scream hysterically in a pusher for 20 minutes, whilst the rest of us clutched our ears and sent death stares in their direction.

And then I was in.

 Sparkly silver shoes and bright red compression stockings are a must for heading to hospital.

I was excited, exhausted, nauseous and desperately in need of toilet break. 

But I wasn't moving till that sucker was stuck in my arm.

They even managed to find me some pretty blue cohesive bandage so no issues with adhesives. There was much merriment that it is also the tape they use on racehorses and that my lovely nurse stole it from another ward. Yep, me, horses and petty larceny, what more could you want.

Hello my pretty.

 The only way to spend 4hrs hooked up to an IV. 

I am keeping the season finale for tomorrow's session so no spoilers please.

2hrs in I was rather excited by my IV. A bp of 120/69 and hr 75 and 

no facial paraesthesia, will do that for you. 

4hrs in I was a tad over sitting in a seat. Amazing how tired you can feel after just sitting around. Plus there was the fact of having to use the share toilet 45 times whilst I was there. People are foul.

But the weird thing was that as much as I was tired and over it, I still felt better than I have in months. When my eldest rocked up at 5pm (with my favourite sushi in hand, he's a good boy) I was ready for a nanna nap, but still whistling a happy tune.

So what was the result?

• The 48hrs post IV I was able to do more than I normally can. My bp stayed relatively stable for the 48hrs something I haven't had for the years. Amazing how much of a difference that makes. Apparently I was also brighter and had colour in my cheeks. 

• By Day 3 it was starting to wain. My bp was starting to do it's usual frantic oscillations but I still felt less of the general malaise I have felt since day one. For those who don't have Dysautonomia, it's kinda like the general crappiness you get when you have the flu, but I'm lucky enough to feel it 24/7 365 days a year. 

• By Day 4 the honeymoon was over and I was pretty much back to my normal. I still tried to push through (or as Mr Grumpy so eloquently put it, I was a "dumbarse"). It wasn't pretty.

• By Day 5 I was a mess and ended up coma sleeping the day away. I am hoping that my crashes will get less with time as this was worse than I've had in a while.

So tomorrow, Wednesday, I head back for another session of IV saline. And Thursday my physio and OT are coming to my house for a session. The plan is two months of weekly infusions followed by rehab the next day to maximise any bonus I get from the saline. All in the hope it can dig me out of the physical hole my body has been digging the past year.

I've never had saline when I wasn't already in crisis so I really had no idea how much of a difference it would make. It's been a pleasant surprise. Using it as a prophylaxis is not the norm here in Australia. It is a first for my specialists, my GP and the physician at the hospital that agreed to let me come in and try. I am hopeful that the combination of weekly saline and rehab will combine to start me on the path to some improvement. I am also hopeful that if I have a good outcome that it may be used as a case to support regular IV saline as an adjunct therapy here in Australia, or at the very least, here in Melbourne.

I am also continuing all my usual treatments (medications, diet, external aides, meditation, etc) so IV saline is not a replacement therapy for me, just another weapon to add to my arsenal.

I'm going to add a caveat here. Regular IV saline is not going to be appropriate for every patient and you should always consult your treating doctor to discuss the specifics of your presentation before making any treatment decisions. There are risks involved with IV saline, such as damage to your veins, clots and infection. Different risks again if you have a Port or PICC line introduced to the mix. However, like every treatment option it comes down to risk-benefit analysis which we all must assess at a personal level. All patients have a responsibility to be as informed as possible about whatever option they choose.

Having said, that I am pretty stoked at the moment and looking forward to my infusion tomorrow. I'll let you know how it goes over time.

Cheers
Michelle :)

Huge shout out to my fabulous GP without whom this wouldn't have happened. I've never had a doctor persevere like that before. Also to the lovely staff at the Day Procedure Unit who couldn't have been nicer and the physician from the unit who took a chance on, what for them, is an out of left field idea.


This song really doesn't have much to do with this post except that it just makes me happy and I love it more every time I watch. Plus, I want to dance like this one day. Maybe I can put that as one of my rehab goals?