Fear and loathing in Las Loungeroom.

(Loving my new The Walking Dead mug. Suits my state of mind perfectly.)

I've had a bit on an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it's difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.

I've noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk it's really rubbed me the wrong way. I've found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.

I'm all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.

I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don't exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong, is another level of guilt to bear.

Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.

Say it's tough and you might as well have said, "on my weekends I enjoy sacrificing small furry kittens to Beelzebub". That is where the crazy lives. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it's not okay in the face of the overwhelming positive brigade.

Sometimes what you need is one safe place to say it's not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don't need solutions. We don't need to be told that we should stop being so negative. That we shouldn't share. That we should always try to find the positive. Some days you simply can't, AND THAT'S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same head space as we are.

In psychology there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or it's lack, can make or break a support group.

We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.

Positivity has it's place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don't need. We have a range of emotions for a reason and each have their place. We are all in different places in this illness journey and we can't expect that everyone will be as sanguine as we are in a particular moment.

This past week I felt fear. Something I haven't experienced in a long time. My bradycardia was the worst it's been in....well, to be honest it was probably the worst it has ever been. I experienced all the crazy scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabalised somewhat I realised I was over it. Really over it. I've been sick a long time. I've had enough.

There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn't scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone or crazy. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it's place. Today I can laugh and smile again. I made it through. Today's emotion losses much of it's salience if it's not seen alongside the darkness of last week.

Living with illness is a crazy ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don't exist or minimising another's experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that's one burden we can change.

Michelle

I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.

Love this cover of Tears for Fears, Mad World. Plus it was featured in Donnie Darko one of my all time favourite movies.

40 is the new whatever.

(source)

Today is the last day of my 30's. Exciting, no? I'm sure I'm excited. Really I am. Well people keep telling me that I should be excited, or depressed, or that today should be seen as a last hurrah. But I seem to have a bad case of the meh.

40 seemed so old when I was a kid. Now it just seems like, well, I'm not sure. It just is. Yet another day on the calendar. Another year done and dusted. I just don't get the hype. I don't feel older. Well my body does, but in my mind I'm still 20, or 12 (fart jokes still crack me up). Apparently, I'm supposed to be hitting my sexual prime. Okay, I can't even type that with a straight face. And if all my years of Oprah viewing taught me anything it was that I am now supposed to have some epiphany and come into my own as a woman. Bwahahahahaha.

Don't get me wrong. I'm not upset or depressed either. And it is better than the alternative. It just doesn't feel like that big a deal in the scheme of things.

The lack of care factor could be partially due to the fact that the last week or so has been more a hello 80 than hello 40 moment.

Last week I was officially confirmed as disabled. Bonus. Yesterday was spent checking out tilting wheelchairs named Karma (obviously I kicked A LOT of kittens in a previous life if that's my karma). YAY. This morning I was mocked by my dosette box and granny compression stockings. And to top it all off I found a new breast lump. Woo Hoo! Celebrate good times. Come On!

Though in truth I've been pretty meh about the whole 40 issue for quite a while. I don't like fuss. I particularly don't like fuss about me. And these days, well fuss is just plain exhausting.

Part of me would like to party like it's 1999. In 1999 I was throwing back rocket fuel shooters in a dodgy karaoke bar in Middle-of-Nowhere, Vietnam. Surrounded by drunk Asian businessmen whilst singing a fabulous, if I do say so myself, version of Fame. Now those were good times.

In reality I'd be happy with a nice meal, chooks and a goat. Yep chooks and a goat. Don't tell me I don't know how to party. Though now we are moving my chook and goat plan has gone on the back burner till we get to the new house at the end of the year.

My 30's have made me re-evaluate what's important. Not out of any deliberate attempt on my behalf to find myself or any other such psycho-babble. But when life hits you upside the head and throws you flailing into the abyss you are forced to really examine all your beliefs and what makes life worthwhile. And frankly arbitrary time measurements and socially expected celebrations aren't up there for me. Good friends, the love of your family and learning that happiness is a gift you can give yourself are where it's at for me.

So goodbye 30, hello 40. Or as it really feels, hello another day of breathing with a potential for macarons.

Cheers
Michelle :)

If you do want to celebrate for me, give out 40 smiles tomorrow. Give them to family, friends or strangers. Or give them to yourself. You just might make someone's day, or even your own. xx

Because I am a child of the 80's and I really can't get excited about tomorrow.

Confirmation of Disability

My fun world of denial hit a snag this week. A big slap-up-side-the-head, marching band, Vegas lights and feather clad showgirls, snag. You see there's this weird little lie I've been telling myself. Although I've been sick for 7 years, although I use shower chairs, a walking stick and on occasion bring out he big guns in the form of Bernice, my wheelchair, and her new, much comfier, replacement Vera to go to a shopping centre or comedy festival, I have somehow managed to overlook the fact that I may be disabled.

You see denial is amazing. It's up there with fingers in my ears, closing my eyes, and saying “I can't hear you. I can't hear you”. Although at some level I knew that I was actually, shall we say, less-functional, than before 2006 and even less functional again in the last year. Despite the fact I have difficulty with my stairs, that I can't stand for long, drop things, walk with either a catch-my-toes shuffle or wide uncoordinated gait that would do a drunken sailor proud (my body likes to mix it up) I have managed to compartmentalise, deny, or at least use a meh attitude to get by.

I have managed to make it this long without the word “disabled” being written in my file. Not that I necessarily have a problem with the word or the concept. It's not that I even object to it being applied to me. Well at least not in my logical, practical moments. But, and because I am a long-term resident of Crazytown, part of me said if it wasn't written in my file, then it wasn't really true. I've said it before and I'll say it again, I should be studied.

As of two days ago it all became fact. Unequivocal, signed off by a doctor, fact. Now if I was a wearer of big girl undies or had eaten a can of Harden up, Princess for breakfast then I would probably be able to just see it as another point in the road that I had to cross. I'd recognise that the piece of paper currently burning a hole in my handbag will allow me access to mobility aides and other help that I would otherwise not be able to afford. I'd be all matter of fact, practical, glass half full, blah, blah, blah. Unfortunately I am not that girl, and am currently in a wee bit of a funk about the whole situation.

Logic is not my friend in this matter although I am sure that at some point that will kick in, but hissy fits, weeping into cornflakes, pouting and the consumption of large amounts of baked goods must occur, before that point is reached.

The OT who I have been seeing has been using gentle encouragement and that “come on now Michelle, time to put those big girl undies on” look to get me to this point. In truth she has gotten me further in the last few weeks than anyone else has in the last 7 years which makes her a bit of a rockstar OT. She has organised my paperwork, had me trying out wheelchairs and basically giving me a reality check, for which I both love and want to stick my tongue out at her. Between her and my physio it has been a hard lesson to digest that I am worse than I had allowed myself to believe. In my mind I was managing pretty well, it was only after assessment that I realised that my idea of managing well, made me the illness equivalent of one of those deluded individuals who firmly believe they are the next American Idol, but are completely unaware that they are tone deaf and have the rhythm of a brick.

So I sat in my GP's office on Monday and handed her the sheets entitled Confirmation of Disability and Disabled Parking Permit and watched her sign away my delusions of still being an able-bodied member of society. Again I was subjected to another example of how clear it is to others, even those who see me sporadically, like my GP.

Now that it's done my family have come out to say “about time, dumbarse”, (okay not everyone one added the “dumbarse” part, but the tone left little doubt that it was implied). It seems I was the only one left who had delusions of my ableness. My ideas that “others need it more”, or “others are worse than me”, was apparently total malarky. It's amazing how completely blind you can be to your own situation. How you can tell yourself lies and believe them completely. How the picture of me I constructed in my head was more fairytale than reality. Denial is a very warm and enticing place. I was quite happy living there.

So I sit here in the hospital sucking down my saline and digesting my new existence. I'm still the exact same person I was Monday morning before the forms were signed. I'm trying to focus on the access it will give me more than the title. As it is I have at least 18mths to adjust to the whole idea before I even have a chance at a newfangled wheelchair. As my OT pointed out (placated me), if I have a miraculous recovery in that time, I can always say no to my new wheels.

It's time to put on my practical hat and be all mature and grown up. But part of me is tempted to just get up quickly and walk at a regular pace from the recliner chair I am sitting in, to the loo round the corner without my cane, just to prove them wrong. Taking a walk on the wild side, baby! It may all end in tears, but damn it would feel good to give it a go.

I'll grow up tomorrow. Promise.

Cheers

Michelle :)

When I grow up – Garbage

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 mad 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 donnas 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 crazy 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.