IV therapy. On Demand. But only if you're hung over, a celebrity or wealthy.

Some days you see a news story and it is hard to not end up angry. A while ago on my local news there was a story about The Remedy Room. This spa in New Orleans is offering IV treatments for the hung over, or those who just want a boost. This isn't the first time I've heard of one of these clinics in the US. I've also heard of them in other countries as well. Individuals can walk in and be hooked up for a reasonable price of US$149. You can top up with pain relievers and a variety of vitamin concoctions.

In one centre in the US if you come in with a hangover you can have IV Zofran (Ondansteron) an antinausea drug, added to your drip. Others offer a travelling service that will come to you. Whilst another sits in a bus outside nightclubs in Las Vegas.

Every time I see one of these stories my blood boils.

Why am I angry? As a patient with Dysautonomia I, and many of my fellow patients, have to beg to be given a litre of saline, despite dehydration and hypovolemia. Despite it known to be an effective treatment. We are told it's dangerous. That your body can become reliant on saline infusions. That our veins will give out. Presentation at an emergency room following a collapse is not a guarantee of IV saline and many patients can attest to being sent home as dehydrated and symptomatic as when they were wheeled in through the automatic front door.

It took 3mths of frustration and searching, for my GP to find a clinic for me to obtain regular IV Saline infusions, despite a medical need. Many patients simply give up on sourcing saline as they simply don't have the energy to fight the system. Ondesrerone is incredibly expensive here in Australia, especially if you have to take it multiple times a day. Yet have a hangover and it's popped right in. In the US there is an IV saline shortage. As pointed out by Was This In the Plan? there is also a shortage of the ingredients that are used to make life sustaining TPN and yet this too can be purchased.

But in these spas, and many others, you can walk in and be hooked up, if you have the funds.

It is not only the US. The UK and Australia also have IV spas. A quick check on Google brings up multiple spas or wellness centres in Australia where you can organise vitamin infused IV therapy.

If you're after "Energising vitality" they can help you out. If you have cold or are simply stressed, others are happy to help. Others speak about a range of health issues from migraine to immune deficiencies, but again price is a factor placing them out of range for many consumers. These products are seen as a saleable commodity, on top of any therapeutic use. With single infusions up for offer for a casual few hundred dollars.

And yesterday this photo came up in my timeline.

(source)

Ryan Phillipe and Paulina Slagter lounging around having a casual IV treatment. To say that I am an angry may be an understatement. They are the picture of self-indulgent wank. A culture that mocks and trivialise those who need such treatments, but are unable to access them either through a lack of funds, lack of physical resources (the shortages described above), or medical opposition.

The repugnant Hangover Heaven bus even sells merchandise to commemorate your experience.

IV therapy isn't the latest trend of celebrities. For so many it is a necessary, and life sustaining therapy. Having been in the position of having to nearly beg for a bag of saline in a hospital emergency room, despite severe dehydration, I can not feel anything but anger. My need is not because of a night spent partying, or because I need a cool pick me up, but because my body refuses to hold oral fluids even with pharmacological help. Because I become so dehydrated I can't stand. I can't speak. I can't lift my hand or function.

People like Mr Phillipe and these spas, trivialise what many patients around the world are going through simply to function at a basic level. They trivialise the struggle to access care. And they show once more that money is the key to healthcare.

They minimise the risks that are associated with these procedures such as infiltration, collapsing veins, infection and vitamin toxicity.

They minimise and make mockery of the many patients who cannot access care.

They minimise and make mockery of the many patients who would love to never see another IV needle again.

They also take financial advantage of patients who in desperation turn to these services for help.

The further commodification of medical therapies thanks to celebrities and spas promoting these therapies as fashionable or trending, mean that they will be placed even further out of the reach of the patients that require them to function or sustain life. And that is unacceptable.

Michelle.

Please head on over to Was This in the Plan? and read:
They choose vanity. We choose life.

Reclamation.

(Picasso, Woman at the Mirror, 1932, oil on canvas, Museum of Modern Art, NY) 

Mother.

Daughter.

Wife.

Sister.

Purveyor of sandwiches.

And bandager of knees.

She is the girl who wears green jumpers.

She is the girl with red shoes.

The girl who writes.

The girl who eats brown sugar straight from the jar.

The sick girl.
The quiet girl.

The good girl.

She is the construct of the perceptions of others.

She is all of these things.

She is none of these things.

She pulls the flesh from her body.

Slowly at first.

Then faster and faster.

Until all that remains is an amorphous pile of flesh and bones.

She surveys the pile.

She pokes and pushes.

Lifts and twirls.

Each fragment inspected in detail.

A lengthy process of selection and exclusion.

Understanding is reached.

A decision is made.

Excitement builds.

She begins building herself anew.

Piece by piece.

She selects what she wants.

What has meaning.

What feels true.

The pieces that are her.

Slowly the pieces coalesce.

They shudder and strain.

They intertwine and weave.

A portrait of herself of her choosing.

Others see the new her and shy away.

This is not the girl they saw.

The girl they knew.

The girl they were comfortable with.

This is something new.

Strange.

Wild.

Untamed.

The new her jars.

The new her challenges.

The new her blinds those who cannot see.

She walks tall.

She dances as she moves.

Her body fluid and right.

She has found her at last.

Her voice is present in every movement.

In every action.

In every word.

In the angle of her head.

And the song in each breath.

She stores the other pieces.

She reworks some.

She sees potential in others.

She stores them for later use.

For future changes and new possibilities.

She was always there.

Under the layers forced upon her by others.

But now she can finally feel and see and hear and know the lightness of her essence.

The lightness of being.

The lightness of reclamation.

The lightness of her.

Michelle

I found this bit of writing in an old notebook. I used to write whilst I sat in the car waiting for my boys to finish various after school activities. I have a collection of pieces of paper and notebooks with all my scrawled half-formed ideas. 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

This week I rocked because.... Episode 9

(I picked up the rock on the right from some land we looked at when we first moved. 

It had rained and the wet surface of the rock shone a deep red, so naturally I had to pocket it.)

There have been highlights and lowlights the last two weeks. Post-event malaise, aka kitchen face-planting, does tend to take the shine off life. But once the self-pity and drool is wiped away I can reflect on some of the good times that have peppered that same time.

I have had some highlights where I pulled a rock star performance from my nether regions to shine for an hour or three.

This week I rocked because....

• I had my first piece of writing (the same one I performed at the Emerging Writers Festival) put up on the Writers Victoria website. That it was also entitled FUBAR just makes it all the more special. As they say, start as you mean to go on.
• I managed to frock up, Dorothy shoes on, for my neurology appointment this week. Despite the mehness of the appointment, I had sushi and saw a guy full steampunk, long black leather jacket, top hat and aviator goggles, at the hospital. If that doesn't bring a smile to your face nothing will.
• I managed to brave the teenage boy funk of the youngest's bedroom and wash his sheets and remake his bed. 
• I squirted cleaner at the mold in the shower. It may not have worked but I still squirted.
• I have been able to keep up with my #lookingup sundown photos each day despite decreptitude. May have resorted to taking one out my toilet window. But at least I took it!

So tell me, how have you rocked this week?

• Feel free to share with anyone else who you think may benefit from recognising and celebrating, just how much they've rocked this past week.

Cheers
Michelle :)

And a little chipper Van Morrison to start the day.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

It was only cordial.

As I lay with my cheek against the cold tiles in my kitchen, it dawned on me that perhaps it was time to clean the kick boards. You never really notice these things until you are eye-to-eye with the miscellaneous splatter. You also never notice those little sticky patches that pepper the floor. Invisible to the naked eye, but very tangible to my cheek as I peel it from the pale tile. If there was any doubt about my tactile senses, the accompanying sticky crackle as my skin slowly separates from the floor, confirms the presence of a little spot of ick. I convince myself that it's an errant drop of cordial rather than a spot of bin juice from a leaky garbage bag. 

Please be cordial.

Slowly I manoeuvre myself into what my yoga teacher always called the child's pose. Edging my way little by little, as every movement brings a threatening wave of darkness. Every millimeter a deafening roar in my ears and a greying of vision. I swallow down the vomit that threatens and continue my cautious choreography. All the while repeating my mantra. 

It was only cordial. It was only cordial.

Bent in half. Forehead on tiles. Arms folded back at my sides. Bum elegantly stuck up in the air. It is only now that I realise that somewhere between sliding down the kitchen cabinets and waking with my cheek superglued to the floor, I have wrenched my neck and shoulder. Focus on the pain not on all the potential sources of kitchen stickiness.

It's only cordial anyway.

I take a deep breath and examine my inverted world. Time to vacuum, that's for sure. And mop. Oh how it needs a mop. Between the inadvertent remnants of cooking and a Great Dane who seems intent on shedding her body weight in hair each week thanks to our fickle weather, the floor is in desperate need of a scrub. As I lie there trying not to breathe in a canine furball, I am once more hit by my desire for a H2O Steam Mop. Because that's what comes to mind when you are trying to avoid thinking about the fact that you have just passed out in the kitchen. Too much morning TV. Those annoying infommercials do their work, despite the irritating pathological excitement of the presenters.

Did you know it'll dissolve the crayon off your vinyl tiles? It'd make short work of that patch of cordial.

Slowly I unwind. A desire to be far away from sticky tiles and dog detritus is a potent incentive to movement. Not that my body wants to comply. It seems to have blinkers on when it comes to domestic hygiene and would happily remain horizontal no matter how repulsive the state of the surface it lies upon. Not that my neck and shoulder don't offer up their own protest. Pursed lips and gritted teeth are all I have left to argue my determination to return to the vertical.

Far away from that patch of cordial. It was most definitely cordial.

Head hanging down I grab the front of the cupboards and will myself up. I walk my way upwards. The rest of the word retreats to the periphery as my focus narrows to the necessities of each movement. The slow release and placement of each hand all that matters. The texture of the laminate under my fingers anchors. Finally I am standing. Legs wide apart. Feet planted firmly. Taking root in the tiles. Head still hanging. I sway before the cabinets breathing slowly, as another wave of fainting threatens.

But at least I am away from that pesky patch of cordial.

I wipe my cheek and feel my fingers stick. Sometimes all you can do is take a deep breath and stumble to the sink to wash away what you have now convinced yourself could only possibly be cordial. Of course it's cordial. It could only be cordial. That's all. Phew. Dodged a bullet there.

Please don't be bin juice.

Michelle

NB I had to remove the option for Anonymous comments as I was being overwhelmed with spam despite my best efforts.  

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

It's been a long day so I need a bit of a pick me up song.

Six months in Chronic Illness

(Sick person going to Lourdes, France to take in the water, source)

3 x GP appointment

2 x Neurologist appointment

1 x Cardiologist appointment

4 x Emergency Department visits

1 x Ambulance call

5 x Blood tests

1 x MRI Brain and Spine

1 x Ultrasound Abdominal

1 x Ultrasound Pelvic

1 x Evoked Potentials bilateral leg

1 x Electromyogram bilateral leg

1 x Nerve Conduction Study bilateral leg
1 x Wheelchair and mobility aids visit 

It's only when I start thinking about the last six months that I begin to realise just how much of that time has been spent in the medical system. It's not even a complete list, only what I can recall off the top of my head as I sit out in my backyard enjoying a few moments of Winter sun. And doesn't mention all the sundry medical interactions. For example all the pharmacy visits for my medications, which are too many to recall accurately. The stack of medication scripts that are stuffed in my big box of pills are a good indicator. The list of new scripts I will have to get from my neurologist on Tuesday an even better reminder. Every week when I fill my pill box there's always one or more meds that I have run out of that must be fetched from my local chemist.

If I had followed up all recommendations from my doctors, the list would be longer. But medical fatigue means that I have let things slide. There is only so much you can take. You have to have life outside of medicine and illness. And each interaction takes it's toll. I should have followed up on physiotherapy. I do need to follow up on my appointment for the autonomic gastroenterologist. But some days I am simply over it. Not necessarily the brightest of moves, but every now and then you have to simply forget it all and sit outside in the garden and smell the roses.

If I included all the times I probably should have gone to the GP or to the Emergency Department it would be longer. But you get used to riding out symptoms. You get used to minimising the day-to-day pain, fatigue and illness. You get used to living in a permanent state of  '000'. And, as the doctor at the ER doctor pointed out the other week, they are happy to help me when I am in acute pain or crisis, but there is nothing more than can do for me in my country town. They can slap on a bandaid, but the wound remains unaltered.

If I included the threats of admission that I have talked my way out of, it would be longer again.

No the pain's much better. 

I'll be fine at home.

Oooo look, I can speak now.

I could get an Oscar for my performance.

If I included the weeks of recovery required from each trip to the city. When I couldn't lift my head off the pillow. When I couldn't keep food down or stand up. Simply because I had to go to see a specialist or have a particular test, which can only be done in the city 3hrs away thanks to my complexity and rareness. Then the list would be longer.

Life is set out as follows:

Prepare for trip to hospital/medical clinic/specialist/test

Make it through appointment/travel to and from/emotional rollercoaster of bad news-no news 

Recover from trip to hospital/medical clinic/specialist/test

Prepare for next trip to doctor/medical clinic/specialist/test

....ad infinitum

The reality is that most of this isn't known outside of our immediate family. The reality is my life and other lives like it, are hidden from the wider world. Forgotten or simply unknown. It's not until you explain your situation to someone and see the horror on their face that you yourself realise how abnormal your life has become.

You collapsed twice at home?

Yes.

But you didn't come in?

No. It happens pretty frequently.

So how do you normally manage the pain?

I just try and ride it out. It always decreases eventually. If I can't walk Mr Grumpy carries me. You learn to manage.

*look of horror and incredulity*

Anything becomes normal after a while.

The term Chronic Illness fails to capture the essence of life living with perpetual illness. Chronic means every day, day after day, week after week, month after month, year after year. It means the pain doesn't go away. It means it doesn't get better. It means that the fatigue and nausea and weakness and all the other symptoms are not going anywhere. It means that even on the good days, the underlying illness is still there and can raise it's head at any time. It means for me and many others that cure isn't an option. It means that management is key. It means no matter how many positive memes, ill advised medical advice or well meaning suggestions you throw at me, it won't fix my medical issues.

That list at the beginning of this post is me working my damnedest to get better, maintain my health and deal with the challenges my body throws my way. It combines with diet, exercise and meditation to try and keep me functioning. It is a full-time job. It's comparative shortness also indicates my need for balance. For maintaining some level of life and joy in the face of constant illness. When the choice is battling through medical red tape to access limited resources or lying out in my backyard looking up at the clouds, the choice isn't hard. Even if it isn't always medically responsible.

Sometimes I have more visits or less, depending on the state of my body. The type of interaction also changes as my symptoms and needs change. But overall this is pretty typical. A small glimpse into my life.

This is the reality of complex chronic illness. This is the reality of my last eight years. It is the reality for many other patients living this life. And my reality is a cakewalk compared to many others. But we get up and we do it again and again.

Let the next six months begin.

Michelle

NB I had to remove the option for Anonymous comments as I was being overwhelmed with spam despite my best efforts.  

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

When the demons whisper.

(source)

I still apologise. I don't know why. Or maybe I do. I'm not sure I want to confront the reasons why. I'm not sure if I want to strip myself bare. And truly examine my internal dialogue.

Yesterday I found myself once again apologising. Whilst bent in two and hoping against hope that I could hold on long enough to find a public loo. Trying not to put extra pressure on my husband as he tried to both press through the traffic as quickly as possible whilst also adhering to road laws. I didn't see much of the trip as my head was on my knees and all my energy was turned towards avoiding vomiting in the car. As he wheeled me into the shopping centre I was still apologising. When I finally made it out I apologised again.

I heard his reply.

You don't have to apologise.

I heard it each time. Yet I kept on apologising.

There's a part of me that feels like I've failed him. That I'm not the woman he married. That our life isn't what he expected.

I mentioned the other day that he was my carer. He hadn't even thought of our relationship that way.

But I had.

Burden.

That's the word that flashes into my head on the days where again I am begging for him to find a toilet, or when I say we have to go because I can feel my body slowly collapse, or I send him to a BBQ alone while I lie on the tiles of our bathroom.

I don't need for him to say it. I feel it everyday. I feel it every cancelled event. I feel it every day I can't prepare a meal. I feel it everyday another medical bill comes through. I feel it when the great unsaid raises it's head. Our finances are screwed over by my illness and all it has drained from us over the last eight years. I feel it every time I have to say

Not tonight.

I apologise because I feel he deserves better. I apologise because I am so reliant. I apologise because I can't be the wife I want to be.

I apologise for the distance that takes up residence on the days where dealing with the challenges of my body over-ride every other aspect of life.

I apologise for changing our life.

I apologise for broken promises.

I apologise for not being good enough.

I apologise for being.

The issue is mine I know. But I don't know how to change it. I want more for him. He deserves more.

So I'll apologise again.

And again.

And again.

Michelle

These boots were made for walking, unless you have Dysautonomia and require a wheelchair, in which case these boots were made for rolling!

"You were't doing anything important were you? No. 

Okay I'll just sniff and try to lick your face then"

After the massive expenditure of spoons yesterday to simply get to the shoe store I thought it only fitting that I dedicate a post to the boots I purchased. I pulled myself together and put on some reasonable clothes, grabbed the boots, and convinced Mr Grumpy to take some photos. I may have forgotten until back inside that I had left my lipstick on the bathroom sink and not put any on my actual lips. And the earrings I was going to wear were next to the lipstick. But hey you get that. 

Trying to get photos was somewhat hampered by a photo bombing Great Dane by the name of Freyja. She has a sixth sense for the camera. Plus standing was out of the question today, so all shots were sitting. 

"Why don't I just lie my head on your legs."

"Oh you were taking photos. Let me sit in front."

I have been looking for a pair of green boots like these for ages. 

Pretty flat so I can walk a bit with my cane.

And they look quite groovy with my compression stockings.

And, after the effort of getting them on, really quite comfortable.

The change over was exhausting. 

Who's mad idea was it to get dressed and try on two pairs of boots? 

Who forgot they had weak hands with no fine motor skills? 

Why that'd be me. 

Half and hour later they were on.

"Don't mind me I'll just lie down in front" 

It's only in photos that I realise how big she is. 

When you live with a Great Dane every day they just look normal size. 

This pair have a wedge heel. I can walk slowly in them with assistance, 

but they are more for when I am in my chair so not walking.

I may also be starting to fad a little by now. 

Groovy stockings and cute grey ankle boots for the win!

I do like the pattern on the toe.

Oh and a cute necklace with robins. 

Remembered that, if not the earrings. 

Top: Lazybones. Can't recall price as a while ago.

Skirt: Rivers AU$10

Stockings: Juzo Soft tie-dye in Scarlet, Thigh High 20-30mmHg AU$90+

Flat-heel lace-up khaki boots: Rivers AU$25

Wedge-heel dove grey ankle boots: Rivers AU$25

Necklace: Rare Rabbit Gift.

Done. Now for a nanna nap/coma sleep. And dreams of pretty boots!

Michelle :)

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

This week I rocked because..... Episode 8

Okay so it's been a while. Life, illness, and the like all got in the way of maintaining a regular segment on the blog. But I feel like now really is the time to bring it back. With my health still swirling around the drain and the current political discourse in our country, it is easy to feel overwhelmed with a wave of ennui, or frustrated, murderous rage, that is thwarted by your body of patheticness (used to be just 'arms of patheticness' but as it's spread I think the use of 'body' is far more apt).

Regular blog readers or FB followers will know that my health is, well...really there are no nice words to describe it of late. The fact that Mr Grumpy forced me (literally drove me into the carpark to make the appointment not telling me what he had planned) to go try out a powered wheelchair, suggest he may have seen through my carefully concealed decline. So it is time to focus on some of the small victories that have been swamped by the blargh.

Despite the decrptitude, I have had some highlights where I pulled a rock star performance from my nether regions to shine for an hour or three.

This week I rocked because....

• I baked bread from scratch. Spelt, walnut and oat. Yum. Sure there was payback, but the smell of that loaf baking in the oven was worth every minute of ugh.
• I managed a 2 blog posts. When I've had days doing more mouth breathing than conscious though this past week, that's worthy of excitement.
• I tidied my bedside table. All my pills are in their boxes. The empty packets in the bin. The 78 hair bands back in the bathroom draw. Even my puke bag is neatly compacted on the table. 
• I have managed my lawn laps 3 days in a row. Admittedly there were stops. Half way through I may have thought I was a crazy woman for trying to make my limbs move whilst swallowing down mini-voms. But I did it. 
• I have made myself go out and look at the sunset. To just appreciate the beauty of the sky. Looking up is kinda nice. 

So tell me, how have you rocked this week?

• Feel free to share with anyone else who you think may benefit from recognising and celebrating, just how much they've rocked this past week.

Cheers
Michelle :)

Sing it Pharrell!

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Them and Us.

The world has been turned into the domain of black and white. It is Us and Them. It is worthy and not worthy. Good vs Bad. Once upon a time there was grey. Once upon a time we realised that the world wasn't quite so simple. That the land between good and bad was peppered with infinite variety. We understood that most of the people we encountered, most of the issues in society were to be understood on a scale of grey. But the grey is now gone.

Society has put on it's blinkers to avoid the complexity that surrounds and inhabits. We want our information in 140 characters. Short. Simple. And to the point. We don't want to think. We don't want to question. We don't want to consider that perhaps the slogans of our politicians and public commentators aren't actually true. It is much easier to understand the world through the lens of Them and Us.

Them are evil, lazy, illegal, undeserving, unworthy.

Us are good and virtuous.

Us are nothing like Them.

We don't want to see Them as people. We give them titles instead. Disabled, Poor, Boat People, Homeless. Scum, Illegals, Bludgers, Scroungers, Slackers. Sometimes we simply give them numbers. Them become dot points on graphs and statistics trotted out by our politicians day-after-day-after-day. Say it enough and we believe. We dehumanise. Labels allow us to distance ourselves from Them. We can sit back and say that'd never happen to Us. We're not like that. Labels and numbers allow us to say and do things we would never say or do to someone when face-to-face. We can forget. It's not our problem. Why should We have to care about Them?

Instead, we must protect Us against Them. We must punish Them for their wicked ways. Or ignore Them. Or call Them names. We can scape-goat Them for everything and anything. We can blame Them for our ills.We can blame Them for their own ills. We can blame Them for our treatment of Them.

We have lost the grey and we have lost our humanity in the process. We refuse to acknowledge that it simple isn't that clear cut. We refuse to believe that one day we could become one of Them.

I am tired of hearing about Them. I am tired of how we can simply ignore others because we can't relate to Them, because we believe that they are so unlike Us. That they are so Other. And therefore deserving of their circumstance.

We have drunk the Kool-Aid. We went back for a second round, and sucked it down with glee. Because that is easy. That is safe.

We have been sold a lie for political expediency and self-protection.

But there is no Them and Us. There is simply Us. Simply humanity in all it's infinite variety. And that humanity is shared even though there may be difference in look, or voice, or ability.

We need to re-embrace all people as Us. Only then can we reclaim compassion. Only then will we attempt to understand. Only then will we act. Only then can we truly move forward as the society that we claim we want to be.

Only then can we leave a world fit for our children to inhabit.

Only then can we leave children who are fit to inhabit the world.

Michelle

Blood Pressure and Heart Rate: How often do you measure?

Today I am answering another question I am commonly asked. How often you measure your blood pressure and heart rate is dependent on a number of features which will be unique to each patient. Here are my tips based on my own experience. No doubt my fogginess has missed some I will think of later. But if anyone has any others please feel free to add them in the comments.

I should add I'm not advocating a particular brand or device. It's worth working out a) what you can afford, b) having a chat with your doctor as to what they recommend, c) reading up on some online reviews, and d) asking on forums for what brands and styles others have found useful.

(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 macarons and salty chips, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)

When I first became ill I was having rapid drops in blood pressure and both it and my heart rate were oscillating continuously. I had no idea what my body was doing and Dysautonomia was simply a word on a page. With months between specialist appointments I had no one to ask if what I was experiencing was a normal part of the disorder or if I was actually about to die. It was a scary time. I'll admit I became a bit paranoid and hypersensitive to every little fluctuation or twitch I felt.

What was that?

Oh crap!

Mr Grumpy, come and feel my pulse!

This doesn't feel right.

Arghhhhhh.....

One day I was in my local chemist and I spotted a blood pressure machine sitting next to bench where I was waiting for my Florinef. It had a large Come in Michelle sign, as Mr Grumpy calls a sale sign. I ummed and ahhed. Wanting to pick it up but not wanting to admit that I wanted to pick it up. The pharmacist came out with my pills and caught my checking it out.

Do you want to have a look? They are a good machine.

Okay. I guess.

Is it for your grandmother? 

Ah, no. It's for me?

Really?

*Insert confused look*

Yet again I was faced with the fact that I was living in a world where my lack of blue rinse and hip replacement made me the odd, younger woman, out. After a quick demonstration, I grabbed the box in shaking hands and sheepishly took my purchase to the check out at the front of the store and headed home.

The family of course thought it was a hilarious new toy and everyone took turns trying it out. In truth it was probably good for my kids. They would take my readings in the middle of doing my exercises.

Hey, Mum. You have the heart rate of an elite athlete. 

And then they would fall down holding their stomachs and laughing, thoroughly impressed at their amazing joke. 

Those early days I took my blood pressure and heart rate frequently. I was so worried about my what my body was doing and back then information was quite limited. So I lived in a perpetual state of hypervigilance accompanied by the frequent whir of my blood pressure machine as the cuff inflated. Soon I was developing a bruise on my upper arm and had multiple long lines down my bicep where my flesh was being squished each time. But taking those readings helped me to feel in control of my situation and I was happy to live with the collection of marks on that poor arm. What I didn't realise was that I was becoming so focused on readings it was making my anxiety worse.

Looking at my dusty machine sitting next to my bed today it's hard to believe how I could have gone from one extreme to another. Continual monitoring to rarely monitoring. Every 3 seconds to once in a blue moon. When I speak to other long term patients it tends to be a bit of theme. Those early days are so fraught with fear from the unknown and all these years later I can't even be bothered all that often. It's too much effort to go into my bedroom and grab it so I just ride out whatever symptom prompted the idea to get it in the first place.

It is easy to become obsessed with readings (puts hand up) especially if you don't have a good support team, medically and personally, around you. Anything for control and understanding. Anything to make sense of the weirdness that your body throws at you. But at some point that focus can be destructive. Constantly focusing on numbers, especially when they don't correlate to what we are feeling can leave us more worried and confused. We are fed so much misinformation, or no information, from doctors who are unfamiliar with dysautonomia, that we often feel we can't trust when they say the classics.

It wont kill you

You're heart is sound.

That reading is impossible.

*The last is my all time favourite. I have been told that my readings aren't possible, only to find them entirely accurate during an arterial bp and on continual cardiac monitoring. Our normal is often frequently abnormal. And not everyone can wrap their head around that.*

Often this is also accompanied by that little voice that resides in our mind and whispers,

What if this time it is a problem?

Who says illness isn't fun?

Am I saying you shouldn't check your readings? No. But it is about balance. Readings can be very helpful in certain situations. In others not so much. 

So when do I take it?

• Initially it is important to establish your normal. And that normal can be very different to other patients. Working out your normal will help in establishing when you need to worry. If you normally run with a bp of 90/70, 110/70 (which technically falls in the normal range) may be high and leave you feeling worse. The same goes for hr and even temperature. If for a month or two you take some frequent readings eg morning, noon and night, lying, sitting, standing. It will give you an idea of what your particular form of normal is. 
• Take that information to your doctor. This will give your doctor more of an idea of what is going on. If you graph it, and there are many apps that will do this, it also makes it easier for you and your doctor to investigate patterns. For example, mornings are hard for many and they can wake with very low blood pressure. Knowing this is a common theme can mean that you implement some techniques to try and alleviate this. If afternoons seem to be your worst time you may instigate a different plan to address that time.
• Before going to a standard appointment. When I have an appointment coming up I still tend to take some readings just so I can give my cardiologist a baseline of how I've been going. It is nice to have readings/data to fall back on, instead of trying to simply explain what is going on.
• Starting a medication. Even now when I start a new medication I take a week of pre-starting and measure for a week after. This can give you and your doctor an idea of whether or not a medication is working, or even becoming problematic. For example, when I started Clonidine I felt off. I was exhausted and my mood dropped. When I rang my cardiologist to say what was happening I had a set of data to show that my blood pressure was dropping lower and lower and more rapidly with every dose. The combination of that data and my self-report meant that my doctor was happy for me to stop immediately.
• If I feel really out of sorts. This is something that I'll do periodically if my symptoms are either far worse than normal or abnormal even for me. This was really helpful when my heart moved into bradycardia. Not only did I feel like death, my heart rate revealed that. Again it was data that I could send to my doctor and led to a quick response. 
• But for the most part I rely on how I feel. If I feel sick, I feel sick. Whatever my reading it doesn't change how I feel. For me relying on how I feel as opposed to any  numbers on a machine has been freeing. Months can go past in between readings. I tend to know when I need more fluids or more salt, or some extra Florinef etc based upon how I feel. If I am just feeling normal sick measuring doesn't even come to mind.

Tips:

• Often with dysautonomia, blood pressure and heart rate are not reflective of how we feel. 
• Some of this is due to the fact that our cerebral blood pressure can be different to that measured by an arm reading. 
• Part can be attributed to the frequently oscillating blood pressure which many patients experience and can only be caught on continuous monitoring. Which means it can be pot luck if we catch an accurate reading. 
• Alternately, if you have particularly low pulse pressure some commercially models will simply read ERROR as they are unable to pick up such a faint pulse. 
• And programs that rely on a finger reading (often available via a PulseOx or Smart Phones) are unreliable as they register movement, or if you have poor peripheral perfusion fail to even register that you have a finger (I set PulseOxs beeping in hospital every time and one physio joked that I looked really good for someone who the PulseOx said was dead).  
• You get what you pay for. Like compression stockings, the more you spend the better the quality. When buying a machine the more expensive the more accurate and often the more options are offered (eg keeping a record of readings, compensating for arrhythmias). 
• Make sure you have the correct cuff size. For example, I am a paediatric to small cuff size. My arm was measured to ensure I had the right size as wrong sizing can lead to incorrect readings.
• Learn the correct way to put on the cuff. There are online instructions (eg here) for taking an accurate blood pressure. Incorrectly placed cuffs will give you no reading or incorrect readings.

• Take your machine into your next doctor appointment to ensure it is correctly calibrated. Not all machines are accurate, even when you pay good money. It is simple to take it into your doctor's office and compare it to their manual and automated readings. You can also ask to be shown the correct way to take a blood pressure.
• Get you machine serviced every year. This is something I didn't know until recently. Most companies or medical supply companies can provide this service for a small fee. You should also get your cuff checked as they can develop small holes as can the tube. 

So those are my basic tips. As always, follow your doctor's instructions as every case is different and your doctor may wish for you to monitor your blood pressure and heart rate for a range of reasons specific to your case.

But overall, my tip would be to not let it consume you. The more we worry the more we stress and the worse our symptoms. Dysautonomia is a chronic condition, which means that we'll be living with this for quite some time if not for the rest of our lives. Finding ways to balance our medical necessities with quality of life is so very important.

Michelle :)