Am I sick enough for you?

Today I read another "but you don't look sick" comment, and it really got my goat (fainting goat of course). The comment wasn't directed at me personally. Although I've heard it enough times over the last seven years, that it raised my hackles once more and had me yelling at the computer screen in defence of the person being attacked.

I'm still perplexed as to what sick looks like. Or what the threshold is as to when you're allowed to say you're sick? And who is the final judge? Are Randy, Keith, Nicki and Mariah going to come to my house and judge my performance? Will Nicki give me a bizarre nickname? Will Randy call me "Dawg".

The fact is that not all illnesses are visible. You can't see diabetes or asthma. You can't always see cancer. A person's suffering cannot be judged by appearance or even diagnosis. Each presentation is unique to that person. As is how it impacts on their life. A twitter friend recently mentioned the hierarchy crap that goes on in cancer support groups. What the hell is wrong with these people? Though I strongly suspect that patients who devalue another patient's experience would be arseholes even if they weren't ill. Having seen similar issues in the Dysautonomia and EDS community at times, it is clear that being ill does not inoculate everyone against developing a bad case of, Being a Dick. 

I am told not to dwell on my illness and conversely that I need to educate people so that they may better understand my experience.

I am told to get out more and conversely that if I'm out and about I can't be that bad after all.

I am told to brush my hair and put on some lippy to feel better and conversely told that I don't look sick.

I can't win.

Should I post only sick photos on this blog or Facebook page? I could do that.

 Oooo look I'm in hospital. Unbrushed hair, sexy hospital gown, 

and slightly deranged look. I must be sick.

Would that convince you?

Or maybe a picture in of me in my wheelchair, Bernice.

FUBAR? 

OMG inappropriate sick person, be more dignified and inspirational.

Are you convinced now?

Some days my outside belies the dysfunction that is occurring within.

Ooo look I'm dressed, my hair is brushed and I have put on lippy. I must be fine. 

Should I have to carry a portfolio of sick photos on those good days to convince you?

Should I have a handy list that describes all my symptoms, medications and the way it all impacts on my, and my family's, life. Bullet points so you can assess my worthiness at a quick glance.

The reality is I have disorder that isn't always easy to spot by others.

I'm sorry if that offends your sensibilities.

I'm sorry that for the 10 minutes you spend with me I don't meet your expectations of sick.

Illness is part of my life. A big part. But I don't have to carry a placard to announce it to the world just to appease your limited thinking skills.

Does that clear up the confusion?

Stupid me for not wearing my incapacity on my sleeve.

And then I am hit with an attack from the flank.

Yes I write a blog about my health and the experience of being ill.

Yes I have a Facebook page dedicated to this blog where I can chat with the community that has sprung up and post inane jokes and take the piss about my experiences.

For some that means I concentrate too much on my illness. Again I can't win.

And yet I do have a life outside of illness.

I paint. I cook. I garden. I love scifi. I am addicted to The Walking Dead. I love music. I have a family. I am a sad dog person. I love sarcastic jokes and black humour. I enjoy a good laugh even when it ends with my passing out. I have watched Zombieland so often that I can quote large sections of the movie by heart. I love vintage fashion. I love re-purposing furniture. I am team Dean. I love hanging out with my best friend, singing 80's ballads and solving the world's problems. I love the smell of books, the real deal, none of that Kindle crap. I want a farm and a chook house. I eat brown sugar out of the jar and have been known to pick out and eat all the the white marshmallows in the bag.

One train of thought tells me if I do all that, I can't really be sick.

One train of thought tells me if I don't embrace all that, I am dwelling in my illness.

Damned if you, and damned if you don't.

NEWSFLASH

I don't care if you think I am sick enough.

I don't care if you think I dwell on my illness too much.

You don't know me or my experience.

You have a glimpse into my life nothing more.

There is no face of illness. There is no look you can pick out in a crowd.

The pictures above represent aspects of my illness and life. But are hardly representative of me as a whole.

The underlying disorder is still there, it's just that sometimes the packaging changes.

It's not my fault that you can't understand that.

And it's not my job to educate you.

That you can't understand says more about your lack of imagination than it does my life.

That you need to judge me says far more about your lack of compassion than it does me.

Imagine what you could achieve if you re-directed all that energy into simply being a decent human being? Or perhaps, shockingly, focusing on your own life.

You may not be able to spot my illness, but I can spot your lack of character at 100 paces.

You may not like how I live my life and deal with my illness. But. Well. Frankly, I couldn't care less.

Now excuse me whilst I go and continue living my life.

There are wheelchairs to be bedazzled, and Daryls to be sighed at.

Michelle

IV Saline Update Weeks 4 & 5

My new boyfriend, sorry Mr Grumpy. I love you IV Saline.

Well here I am already at the halfway mark of my two month trial of IV fluids and rehabilitation. How time flies when you're being poked with needles once a week. As my lovely nurse said today I'm looking a little druggie at the moment with my track marks. But so far my veins have been found and fluids have been infused so I can put up with looking like an extra from Trainspotting. It's a small price to pay for feeling semi-human once a week.

Surprisingly my veins are still hanging in there. Last week the one in my left arm was super painful. It felt like the doctor had put the cannula in a nerve rather than in my vein. Couldn't even use my arm whilst it was in and it ached for hours after. That was frustrating. But I sucked it up and just concentrated on the sweet sweet saline fix I was getting. Today my favourite nurse put it straight in, pain free. Love her. Always amazed at how some seem to have a natural talent for putting the cannula in and others do it like they are playing Pin the Tail on the Donkey, complete with blindfold, spinning and after downing a keg.

My blood pressure continues to be more stable whilst I am having the infusion and for about 48 hours after. It's not quite as stable as it was the first time I was infused which is a pity, but I'll take what I can get. And at this point it's still far more stable than what I was used to pre-infusions.

Last week I did have a bad patch of bradycardia during infusion which I hadn't experienced previously. Luckily it was still 40bpm so for me that was fine as it has gone lower and for far longer at times. But it did freak out the nursing staff a bit. It's always strange what you get used to with this disorder. My ANS has been unstable for so long that much of what goes on has become white noise. It's only when others point it out, that you realise it really isn't that normal.

Case in point: today my temperature has been jumping around: 38.2C when I first came in, 35.5C a couple of hours later. Poor new nurse wasn't used to my body so we had to try a few different thermometers to test my temperature. All of which came back in the 35C range. In the end she threw up her hands, agreed it must be right and walked off shaking her head. By the end I was back up to a reasonable 36.6C. Personally, I think that whole homoeostasis thing is over-rated, but my lack of it continues to be confounding to others.

The fact that my heart rate, blood pressure and body temperature are constantly oscillating, whilst annoying and exhausting, seem so normal to me now is probably a problem. I've talked before about losing sight of just how sick weare when you're sick 24/7. It's really only at times like this or when I was assessed by my Occupational Therapist and Physiotherapist that I realise just how much my health has deteriorated. And just how far from normal my body now resides. In one way it's refreshing to see the look of horror on the faces of the medical staff when they realise just what is going on in my body, ("I know it could be worse, but OHMYGOD" was one reaction from today when I went through my story again) especially with so many not understanding or believing over the years. But as much as that understanding is good, still it is very much a case of sucking it up, not dwelling, and getting on with life. As we all know there's not a lot of options out there.

I'm still noticing that for those first few days that I am mentally sharper. Even writing a basic blog post which will normally take me around a day is now a couple of hours and maybe 2-3 drafts, vs 6-10. Whilst I wouldn't say I'm even close to what I was before becoming unwell, I am still far better than the vagueness that I have become so used to over the last seven years.

The only real sticking point for me is the fatigue. My stamina is still poor. If my body or schedule get even slightly out of whack then the fatigue hits like a tonne of bricks. With infusion days requiring an early morning start, which doesn't allow for the meds to kick in, or for me to get my usual morning ritual of communing with my porcelain lover for an hour or two out of the way, the day is already off to a bad start. I've also been finding that simply sitting in the chair for those 4-5 hrs plus a lot of conversation and being poked and prodded is exhausting. The Day Procedure Unit where I have my infusion is quiet and less hectic than other hospitals I've been in, but still I find that all the stimulation is overwhelming and tiring. In a way, the very process involved in accessing IV Saline absorbs some of the benefit. I often wonder if I could do it at home in my quiet house over the evening if I would see more of a benefit. Not that I have that as an option unfortunately, but I do wonder if others who can self-administer at home have noticed the difference.

And I continue to suck down my oral fluids from my smelly hospital jug. 

I still think it looks way too much like a pee bottle.

I did manage to get out of the house for the first time in nearly a year last Thursday after I had the infusion and I know I would have been unable to do that before. A long drive for a late night in the city at the Melbourne International Comedy Festival ticks all the wrong boxes for my body and would generally be something I'd avoid. But I made it through and had fun. I didn't even get home until 11:30pm which is unheard of for me. Full disclosure says I was feeling like death warmed up for the next few days and completely non-functioning, but actually going out has been beyond me for a long time. So high fives to that litre bag of juice.

My physio and OT have been scaled back a little thanks to my protesting body but I am still doing three lots of OT arm exercises and two of physio a day. I think there is a difference but it is hard to tell. Last week I popped my right hip just before the physio came and then had a bad intention tremor for most of the session which put a dampner on things. But I am trying to crawl my way back. I'm determined to do as much as I can but it is a slow process when you are starting from less than zero.

Today as tired as I am, I've had a lovely reading of 112/68 hr 66. It doesn't seem real but there it was on the screen and I saw the nurse write it down on my file, so it has to be real. Amazing what your body can do when it has adequate blood volume. I love you little bag of saline.

Air kisses to the machine that pumps the juice into my veins.

And even bigger air kisses for the magical bag of juice itself.

I should add that my final reading was 95/68 because I'm weird like that. As the perplexed nurse said “but you've just had a litre of fluids it shouldn't drop”. Oh well, if she comes back in 5mins I'm sure it'll be back up. It is actually nice to have the obs to back up what I am saying to them. So often you try to explain what our bodies do and you're told it's not possible or it can't be as bad as you say and for five weeks now they've been able to document every up and down of my wildly swinging ANS. I've answered more questions about Dysautonomia in the last five weeks than I have in the last few years. Actually this whole process has been an education and awareness raising bonanza, from nursing to allied health. And whilst my main focus has been simply getting fluids that has been an added bonus to the whole process.

So as things stand at the end of Week 5, the pros and cons are as follows:

Pros

• Reduced facial paraesthesia.
• Reducing/halting facial droop aka stroke face.
• Colour in my face.
• Blood Pressure more stable for at least 48hrs. Still fluctuates but the range is dramatically reduced.
• I have Pulse Pressure (Systolic minus Diastolic eg a bp of 120/80 has a pulse pressure of 40). No single digit pulse pressures since I started IV Saline.
• Heart Rate more in normal range, far less bradycardia overall, no episodes of tachycardia in 5 weeks.
• Improved mental acuity in the 48hr window.
• General malaise/flu feeling improved for 3-4days.
• Ability to participate in Physio and OT next day.
• Went out at night for the first time in nearly a year.
• Have been able to do a few jobs around the house that I had been putting off due to my health.

Cons

• Logistics of getting to hospital weekly and day long procedure.
• Fatigue from hospital day.
• Did catch a bug from hospital.
• Veins getting weaker from multiple needle sticks.
• Big crash on last few days (not sure if it's worse because I am feeling better and therefore doing more which leads to a bigger crash.)
• Real benefit only for 48hrs

Michelle :)

You are Just the Thing, IV Saline.

Music Therapy

This post is dedicated to my dear friend, Autumn. A  fellow patient and Foo Fighters fan who's doing it tough right now. Send her some love. I hope things pick up for you my friend and you find some relief. xx

(My old battered copy of, One by One. Well used and well loved.)

I've been having another rough patch over the last few days. Just another trough in the usual roller-coaster ride that is Dysautonomia. Fun times. I have been perfecting the art of woe-is-me, hidden under the bed covers. Going for gold, people. None of this half-arsed whinging for me. In between moments of dramatic self-pity and swooning, I have also been playing my 'feel better' playlist on loop. All in the hope it'll pick me up and start me on the road back to normal levels of crap health. It's not the classic 'feel better' list, filled with touchy feely, treacle tunes, that most expect. Whilst I do have a typical emo list that I can sob away to at need (and lets face it ,we all need to do that at times), most of my 'feel better' list is far more rocky.

Music plays a huge part in my life as it does the lives of many. And my musical tastes are eclectic to say the least. I have a variety of playlists and artists that I follow, all of whom fit my differing moods. Some days you need a bit of alternative acoustic or jazz classics and yet other days you need to lose yourself in an 80s power ballad or some kickarse rock tune. In amongst all these tunes I have a small select collection of songs that rise above the others. Songs that have resonated with me from the first time I heard them played. There is something in the lyric, or the rise and fall of the melody, that just connects. I couldn't necessarily tell you why. But that song was there at just the right time. That magical moment when mood, need and music collide.

I often wonder if artists truly realise the impact their songs can have on the lives of those who listen to them. People who they will likely never meet, but are truly grateful that they took the time to pen those particular words and then, to share them with the world. That the three or four minutes of cracking beats and well-crafted words they create, can help people through the toughest and best times of their lives. I hope so.

Does it matter that what I find in the song may be different from the intent, or inspiring event, of the artist? Or does the fact it stirs something in me, something personal and visceral, fill the artist's intent? In turn emphasising the power and gift of both song and song writer? To be able to create something that stirs other people and resonates years after it is written is a gift and one I hope the artists know we cherish.

What stirs me may mean nothing to others. Similarly, what stirs others may remain a mystery to me. That is the power of music. We all have a need to be lifted up when times get tough and there is always a tune somewhere that'll be up to the task. An artist who speaks to your heart in just the right way.

One of my favourites came up on my newsfeed today and I immediately had to click play. You see when any of those central pick me up songs, comes up in my newsfeed, or I hear a snippet in a shop, or on the radio, I find myself reflexively singing along. Mostly under my breath or when I am having one of those completely oblivious days, singing out loud no matter who's around. And always that same feeling is evoked and everything just feels better. Just like smells can bring back memories, music for me can bring back a whole range of emotions.

Times like these, by the Foo Fighters came up today, and it is one of my seminal songs. Actually, I have a few Foo Fighters' songs in my list, Best of You and Walk are also known to be played loud when I am having a shocker of a day. But today it was Times Like These and I found myself singing along before the video even began.

   

I love the rockier version, but this acoustic version brings the words to life for me.

I've loved this song from the first time I heard it in my pre-sick days. And now that I am ill it has become a staple of my collection, and one to which I always come back.

I am a one way motorway

I'm the road that drives away

then follows you back home

I am a streetlight shining

I'm a white light blinding bright

burning off and on.

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again.

I am a new day rising

I'm a brand new sky

to hang the stars upon tonight

I am a little divided 

do I stay or run away

and leave it all behind?

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again.

The chorus just rings true for me. "it's times like these you learn to live again". Being sick it is easy to feel helpless and hopeless. But it can also be a time to relearn and reinvent yourself.

I didn't plan on being so ill. I didn't expect to spend my 30's as a medical guinea pig. I didn't expect to require a wheelchair or cane or a gigantic dosette box to house my ever increasing pill collection. For a long time I let that weight bear down on my shoulders at will, and felt defeated.

But I sit here almost 40 and realise that I have learnt to live again. Not just live, but enjoy life and all aspects of it. I don't enjoy it despite the painful and darker parts. I enjoy it because of them. Those harder aspects of life make the good parts shine even brighter. They serve a definite purpose in my life in that I now have an appreciation for the little things that make me happy. Things that I would have missed before. They forced me to re-evaluate my life and my perceptions and to realise that enjoying life is a choice, not defined by my life circumstances.

And all of that is captured in that one song.

I have no idea if that was what Dave Grohl or the Foo Fighters had in mind when this song was recorded, but it is what I take from the lyrics. Those words and the music they are so carefully wrapped in, hold all that and more for me. I don't care if anyone else can understand that. This is my song. You can have yours. I know that Dave Grohl will never know how much his words mean to me. That this slightly strange woman from Australia, sitting on her couch surrounded by dogs and coffee mugs, hears that song and it works like a panacea for the soul during those tough times. He will never know, but I am still thankful that he wrote them.

Cheers
Michelle :)

Are you a Foo Fighters fan? Or do your tastes run in different directions? What are some of your favourite pick me up songs?

Hard

This is a stream of consciousness (or mind purge as I like to think of it) piece, unedited.

There's tired and then there's tired. Today is one of those days where tired requires italicises, bold font, underlines, asterixes the works. Before getting sick in 2006 I thought I knew what tired was, but now I realise just how clueless I was. It's one of those days where every molecule of vitality has been wrung from my body. Where nothing remains. Where breathing is arduous and if I catch myself thinking about it I lose the rhythm  How that's possible I don't know. Yet every time I think about my breath I lose it. It comes up short, or the rhythm is completely lost until it resembles some discombobulated Morse code that even my body cannot understand. And words, what are words, They flow through my mind a fleeting moment of clarity and then....nothing. I know I had a thought. It was coherent but now 3 seconds later it is gone. Lost to the ether as if it had never existed in the first place. Not even an echo remains  Speech is beyond me. To coordinate standing, breathing, being, with words, with responses and meaning becomes a......I don't know. An analogy is beyond me. Ask me tomorrow or the next day and I'll give you a cracker but now I am stuck with four letter words. HARD. Thinking is hard. Breathing is hard. Being is hard. There is no word in the English language that is sufficient to express the fatigue illness brings. I'm sure the Germans have a good one, or maybe the French, but I can't even be bothered Googling to find out. The tired of chronic illness is not like any other. One night out and pay for a day, a week, a month. Pay with exhaustion that renders the soul. The Ferryman has his due and I lay here on the bed typing with fingers that seem intent on their own path across the keys. I will them towards the keys of my choice. I beg and plead. But there is a disconnect. The fingers are not my own. Nor are my arms, my legs, my heart, my lungs. I am a being of discordant parts. And the tiredness is impenetrable  the tiredness conquers. I am wrong  Every part is wrong. But fatigue mutes my response. To move, to readjust or reposition is more than I am capable. So I lie incapable of movement, of speech, of thought, or anything. Everything is too much. My taxed body can take no more sound, or sight or touch. No more. A fractured person held together only by a heavy blanketing fatigue that will not lift for days. Bound and enduring. The weight of my body increases exponentially and time seems to stretch incalculable as my mind collapses under the weight of fatigue and I drift back into oblivion. Last thoughts longing to wake with the worst of it past. Last thoughts more feeling than words. Muted feelings. Too hard to think too hard to feel. To hard to be. Wake me tomorrow or the tomorrow after that when the worst is passed and my old normal re-establishes itself. The old normal which I bemoan and disparage but at times like this shines golden. Sometimes it's these steps back that make us appreciate what we do have. But for now I'll bury myself under doonas and blankets and pillows and form unintelligibly cries in my mind more a jumble of feelings and images than words. And just focus on being on surviving till I emerge once more. Till the pieces connect again and unity is once more established. Till I can breathe and stand. And stand and talk. And move in the tiny realm I inhabit. And live. Till the next time I dare venture into the world and am lost once more.

Michelle

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?