Missing Time.

(source)

Sometimes the world moves past furiously, while I sit here in one place. Me in my little glass fishbowl of illness. The rest of the world buzzing by with plans and destinations.

I look around me, face pressed against the glass, and people are living. They are going to work, to parties, planning weekend BBQs and trips overseas. They bemoan sporting events and school plays. Not another work do? Two parties on the same night? What to do? They are renovating and undertaking garden makeovers. The Internet is abuzz with posts about planning school holiday trips and Christmas vacations.

(source)

Me?

I'm working out how many specialist appointments I have before Christmas. Working out how I can arrange transport to get my long overdue monthly blood work drawn.

I'm trying to list what meds I need to buy this pay day. How many referral letters and re-prescriptions I need to organise at my next GP appointment.

I'm planning my next trip to see a doctor. Do I have my med to stop vomiting, the one to stop me peeing, the one to stop the trotts, the extra salt and the bottle of water? Do I have my puke bag? The loo paper? Have I taken my pain meds in time? Do I have their number so I can ring and say I am running late because I am stuck in the bathroom of a 7/11 crying at the indignity of having to throw up yet again in foulness of the communal bathroom?

I'm waiting on wheelchairs and working out how to pay for another pair of compression stockings. I'm working out my plan for fire season and how to pack my medicines that need refrigeration. I'm making sure my medical records are in one place, next to my photos and my laptop.

My plans aren't like other plans. Nor are my destinations and goals.

It feels like there are two streams co-existing side-by-side. Never meeting. One looking longingly at the other. The other going on, oblivious to the first. My personal little version of the multi-verse. My alternate reality.

(source)

The days flow by, the weeks, the months. All of a sudden it's almost October and I wonder how I got here. The days merge and time is no longer measured as it once was. All temporal bets are off. Some days fly by. The week gone before I had even realised it began. Some days are excruciatingly long. They drag by, seemingly infinite, tearing at my nerves. I can feel the stress of those long days in the roots of my hair, at the base of my fingernails. I feel it in my viscera. I beg for them to end. And yet...

...to those living in the other stream,

it's just another 24hr period. 

I am set adrift by insomnia, coma sleeps, exhaustion so deep it renders the rest of the world non-existent. I have no boundaries, no schedules, no timelines to imbue my world with direction and structure. I am simply here, floating from hour to hour. Night and day have no meaning when sleep is so elusive and so contrary. I measure time in pain, in fatigue, in nausea, in weakness, and that word my doctors seem so fond of, malaise. I measure time in medication. In when to eat and how much I can drink before a trip. I measure time in the number of trips to the loo to empty my body from one end or the other. I measure time in how many hours till sunrise as I lie looking up at the ceiling in that special darkness that only exists at 3am. I measure how long I have to stand at the chemist counter. How long till I have to cook dinner. I measure time in pieces. Unconnected chunks of time that clash and flow unevenly.

I lose time. I lose a sense of connection to the real world.

I am left behind. Stuck in my glass bowl.

The disorganised time of illness overwhelms and I have to make my escape.

So I go and I sit in my garden. I feel the sun on my face and the earth beneath my feet. I dig them deep. Squishing the loamy earth up between my toes. I breath in the comforting smell of freshly turned soil. I marvel at the tiny creatures that live and work in the darkness. The hint of future life and possibilities that it contains.

I run my hand through the herbs. The mint growing up through the brick work, the rosemary in an old concrete pot I found under a pile of ivy behind the shed, the thyme and the sage. The waft of perfume strong and rich. I cover my face with my hands and inhale the traces of fragrant oils. Let it infuse my being.

I concentrate on the sounds around me. The bees meandering through the upright stalks of the lavender. Legs laden with pollen. Bringing life. Buzzing with the joy of the abundance around them. The tiny skinks lounging on the rocks that create the garden edging. Basking in the sun. Enjoying the warmth no matter the risks of being out in the open. The birds singing of hope from the branches above. Hope for new mates. Hope for new life. Hope.

And I lose time in the embrace of the life that surrounds me.

I open my eyes and find myself a step closer to being whole. I breathe in the energy and life around me. Allow myself to become a part of that world, the cusp of Spring, the cusp of possibility after the cold of Winter. And take a little of the hope for myself.

(The heart of my glass bowl)

My glass bowl may be small. But it is filled with life. An abundance, if I choose to find it. Choose to let myself embrace it. Choose to hope. To dare myself into believing that this new life has worth. And I fill my bowl with light and life. With gardens and beauty. I am happy to lose time in that world. To accept that time runs differently in the bowl. That it isn't a static, defined constant. That, instead, it is a wild creature living to it's own tune. That tune, is my tune. My time.

Maybe my time isn't missing. 

Maybe it's always been there. 

Maybe I just need to see it.

My time is different. 

But my time is perfect.

If I allow it to be.

Michelle :)

Perfect words from Talking Heads.

"And she was looking at herself 

And things were looking like a movie 

She had a pleasant elevation 

She's moving out in all directions.... 

....Joining the world of missing persons (and she was) 

Missing enough to feel alright (and she was)"

This week I rocked because..... Episode 7.

How does Friday come around so quickly? I swear it sneaks up on me each week. Mind you, no longer working and a week punctuated with coma sleep will mess with your ability to keep up with the space-time continuum. So probably not all that surprising. Plus being easily surprised does make life a wee bit more interesting. Ooo look it's Friday! Ooo look the coffee grinder is full! Ooo look.....!

The old brain hasn't been working on all four cylinders this week as evidenced by the fact that I have a stock of "I Rock" pictures sitting, waiting in a specific folder for today's posts, yet forgot entirely. Instead I had a "Oh shit! I need a photo for today's post" moment and headed out to the backyard with my phone, a pen and some sticky labels to hunt down a long suffering Thor for today's picture. The dumb is strong today.

Despite this, 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 wrote a Saturday post last week. I have no idea why I did this as Saturday is not known for it's huge reader numbers. But it went off on the forums and over over on FB. Seems a lot of us have difficulties with talking. Who knew?
• I cleared off a garden path so that I can now safely make it down the slope we live on, to pick lemons from my lemon tree. This was something that has been annoying me for months. Every time I would head out to grab a lemon and I would be thwarted by the overgrown path of doom that required a machete and Indiana Jones to navigate. I swear I heard the onion grass mocking me from the centre of the path. Take that onion grass!
• I made a batch of bone shaped biscuits, or Puppy 'crack' biscuits as I like to call them, for the mutts. There's not much Thor and Freyja wont do for a taste of those savoury titbits of China white.
• I also made a batch of hotcrossless buns. I have no idea where the baking mojo came from, or why I thought my protesting body would agree to me making them. But I managed them and just embraced the following coma sleep, rather than ruing it's existence. 

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 :)

Thanks to everyone who has been participating in TWIRB over the past 7 weeks. It's been great to see so many people celebrating the victories big and small over the week. So important to remember them in light of the day-to-day living with chronic illness.

I have had some messages from people saying they have trouble commenting on the blog. I'm not sure why, but it seems that commenting from a phone is playing up the most. I did have someone suggest logging in using Safari as an option. Not that I know how you log in using Safari. or what Safari is exactly, other than the go look at lions and giraffes version. But hey if you do, give it a go and see what happens. :)

This song by C2C featuring D Martin is one of my favourite pick me up/rock/celebrating songs. How can you not feel happy listening to this? And the dancing is just amazing. 

Speak words hard: Conversations with Dysautonomia.

(source)

Talk. Talk. Talk. My working life revolved around talking. I talked with patients. I talked with patients' families. I talked with other staff. I talked in team meetings. On the phone to GPs. On the phone to various rehabilitation and care agencies. I presented Grand Rounds and gave regular inservices. I said my piece in working groups and at length of stay meetings. I spoke with lawyers and tribunal members. Over the years I won awards for my case study and conference presentations. Even back in my school days, I was always picked to read aloud in class and was HD all the way for oral reports. Frankly, if there was an event for talking at the Olympics, I'd have pretty much been going for Gold.

But now.

For someone who was so highly verbal before I became ill, I am pretty much mute.

Talking is exhausting. Physically and mentally.

And I avoid it like the plague.

Back in my working days I understood this, at least in the way it related to my patients. When patients came in who'd suffered a severe brain injury we would minimise visitors, sometimes down to one person each day, for only a couple of minutes at a time. Everything would be done in short, sharp bursts. It was recognised that excessive stimulation, even from well intentioned loved ones, was too much. Requiring a patient to respond to simple questions such as "do you want a drink?", or "are you in pain?" could be too much and set them back for days.

Sometimes, even months after an injury, I would help patients and their families, structure interactions to minimise how much they'd be required to talk. Even my sessions would be restricted to 5 or 10 minutes depending on the patient's limits. And you could see as a session went on, the patient would begin to fade (and not just thanks to my scintillating conversational skills). Their shoulders would start to slump. Their eyes would get heavy, they'd begin to glaze over. Even their facial muscles would start to droop.

I often wonder if that is how I now look?

The level of exhaustion from simply conversing can be overwhelming. It can drain you to the very core. To the point where you don't even have the energy or wherewithal to say, "STOP".

I realise now, even the best, and most well intentioned clinicians, cannot fully understand this and other illness related issues, unless they too have experienced them. Fatigue, is just a word. A descriptor used in rehabilitation and medical settings. Intellectually you can understand it. You can write it down in a file or in a report and other clinicians understand what you are talking about. You can identify triggers and design a protocol to help a patient manage. You can even conduct an education session for ward staff on the topic. But you can never fully understand what it feels like to live with it, day-in and day-out. That's not a criticism. It's just a simple fact. And something that I now appreciate having been on both sides of the desk.

The physical exhaustion associated with speaking is ironically hard to articulate, and often even harder for others to understand. That what they still take for granted, is just so difficult for us now.

Long conversations. Conversations with more than one person. Conversations in loud or busy places. Conversations standing up. Conversations whilst I am trying to do something else. Or, the dreaded phone call. All can leave me exhausted.

Physically, I now find my facial muscles tire easily. They become sore and uncoordinated, even on a good day. I end up slurring my words, or having to stop and physically force my muscles to coordinate. I have trouble maintaining my gaze and have to repeatedly look away, which I know must come across as rude, or at least a tad weird. And afterwards, my face hurts from the strain of making the movements.

And mentally. Good or bad day, the only difference is how long I can last. Actively listening and communicating is difficult at the best of times. My attention span is short and the amount of time I can concentrate and the amount of information I can process, is substantially reduced, thanks to that pesky cerebral perfusion issue. Trying to make sense of what a person is actually saying or asking, and then forming a coherent answer in response, is up there with String Theory some days. I have difficulties finding the words I want, or I say wrong words. Or if I am truly exhausted it can be complete nonsense or a seemingly complete hodgepodge of words, that is known as word salad. Trying to simultaneously integrate body language and facial expression, and it is almost as if the whole that is normal communication, is broken down into its disparate parts and I am continually trying to sew it all back together, only to have the initial thread start to come loose again.

Believe you me. You haven't felt like an absolute top parent until you've yelled repeatedly at your son for bringing you a spoon, when you keep asking him to bring you a fork, only to suddenly realise you've been saying spoon all along.

Then there is the fun of trying to tune out competing information in the form of other people or background noise, eg a TV, yelling kids, or other people talking, which can be not only challenging, but once again exhausting.

And if you add in fatigue, medication effects, anxiety (because you get stressed knowing that you will have to talk and may stuff it up), if you are more ill than normal, or dealing with the flu etc talking becomes yet another Herculean task in the day.

And the phone. Don't get me started on the phone. I am not sure what it is, but it is one of the hardest forms of communication for me. Maybe it's the lack of social cues, the lack of anchoring and context (ie it's just words in isolation), the fact that it strips bare the one area where I am most self-conscious. I'm not sure. But I am sure I hate it and avoid it at all costs.

And my inability to communicate.

My inability to do the simplest of tasks.

A task which was once my forte.

Frustrates me no end.

And,

I feel embarrassed.

Give me writing any day. No one sees my first drafts, my uncoordinated sausage fingers, or the initial lack of joining words and punctuation. I can revise and edit to my hearts content. Or until I get too exhausted, have minimised my grammatical and spelling abominations to a manageable level and am pretty much meh about it all. But talk? I'd rather have a rectal exam by that meth-addled lemur on a unicycle.

Speak words hard. Mowf truffles bad.

Cheers
Michelle :)

I couldn't go past a little Bee Jees, for today's musical interlude.

This week I rocked because.....Episode 6.

Well it's that time of week again. Time to bask in the awesomeness that is you, and all you have achieved this past week. Things have been a bit up and down this week here at Chateau Rusty (I seem to be saying that a lot lately), but I have been able to achieve some bits and pieces in between the moaning and pity parties for one.

This week I rocked because:

• I managed to wash my hair not once, but twice! "Whoa, Crazy Lady", I hear you say. But hey. It was nice to have clean hair for an entire week.
• I managed to get some crafting going on and am in the process of immortalising some of my old work material into and art piece. Has been quite therapeutic.
• I cooked my eldest a sticky date pudding and made the toffee sauce from scratch as well. He's been great taking me to all my appointments and generally caring for his decrepit old mum, so it was the least I could do.
• After somewhat of a post-new diagnosis melt down, I went and sat out in my garden, felt the soil between my toes and just let myself breathe. Didn't even beat myself up for it (well mostly) afterwards.
• I even shared a short video of the difficulties I'm having with my facial muscles at present over on FB, not pretty by any stretch of the imagination. I ummed and ahhed about it, but glad I did now as it led me to a great support page and some truly lovely fellow patients/friends who shared their stories with me. Which is what this whole awareness, unmasking of illness malarky is all about.

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 :)

I've been listening to a bit of Sia this week and these lyrics seems to have stuck out. 

"I'm bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won't fall
I am titanium
You shoot me down but I won't fall
I am titanium"

16 points to consider when reading medical research.

I love the picture above. It sums up everything that irks me with media reporting of medical information and research studies. How many times have you seen the headline "New hope for cancer sufferers. Coffee the key to cure. Full story at 9." Everyone gets excited. Family members run to text patients. News feeds fill with retweets and shares. It's then picked up by multiple news outlets who lead their news hour with the same headline. Only to find with a few moments Googling, that this headline is based on a pilot study involving 3 rats at an obscure lab in Dusseldorf, that the researchers are still trying to work out exactly what levels of coffee are required for the effect, if the coffee brand they fed their tiny white cohort was what caused the death of the other 2 rats, and if any other intervening factors affected their results. In the meantime, desperate patients are chugging down their double espressos with wild abandon, thanks to a shoddy news report.

If you want to take control of your health and you want the best care for your condition you need to be able to sort through all this information and determine what is reputable, what is flawed, or in some cases, what is totally fraudulent. Being an informed patient increases your odds of a better health outcome. And, although often a dry and arduous task, understanding the information available about our varied disorders is worth the effort. The knowledge and skills required to interpret this information is what is known as health literacy.

Interpreting medical information, in all its forms, is not something we are all equipped to do. But in this, the first of 2 posts on the topic, I will give you some basic tips you can use to begin navigating the quagmire that is medical research and reporting.

1. Check your own biases: this is probably not the point you expected me to start with, but it is very important all the same. We all have biases. Some we are well aware of, and others that are more unconscious. Some have an inherent distrust of pharmaceutical companies or the medical establishment. Some have a unassailable belief in a particular treatment. Yet others have an unwavering confidence in a particular researcher, or research organisation. Rightly or wrongly, we need to acknowledge these before we can objectively interpret any medical information from the news media, websites, or well known medical journals. Time and again I've seen people read the same information, or watch the same documentary, and come out enthused by the support for their particular position. Positions which just happen to be the polar opposite of each other. As human beings we naturally drift towards information that is salient to us and our belief system. And we are more inclined to pick out that which reinforces our existing position. If we don't check these natural instincts, we may be doing ourselves, and our health, a disservice. 
2. Be sceptical: a healthy dose of scepticism is good for everyone. If something sounds too good to be true it probably is. If someone is touting a cure, especially one that only they know of, but they are willing to share with you for the price of your left kidney or your first born, run and run fast. If someone has a product or treatment that cures everything from halitosis to Alzheimer's disease, run even faster. There are also less than reputable medical, health, and alternative practitioners, who add in just enough medical and authoritative jargon to their claims, that it can make it hard to discern fact from fiction. Even if the information comes from a well known and reputable medical source be sceptical until they can show you the evidence that backs their claims. Remember that a good researcher will be his or her best critic, because they can see the limitations of their work and the areas requiring further research. 
3. Not all research gets published: Research studies that find no evidence for a particular theory or are neutral, rarely get published. For example, a recent BMJ article found that 29% of registered trials completed prior to 2009 were never published, with a higher rate (32%) of unpublished trials in industry funded research. With 78% of the unpublished trials not having their data available on ClinicalTrials.com. For every paper that finds support for particular theory/treatment, there may be a dozen with no or neutral findings that will never see the light of day, something that became readily apparent in the high pressure, research machine of my doctoral days. As such, we are already consuming inherently biased information.
4. Patient testimonies and anecdotal evidence: Often we hear personal testimonies/anecdotal evidence regarding particular treatments. These can be interesting from a patient perspective; I know I love to hear real experiences from other patients. However, alone they cannot be used to prove or disprove a claim, and are often more reflective of what is salient to that patient, rather than an objective review of the treatment. Clinics who use this type of information to sell their theory or treatment, are highly unlikely to put up negative testimonials on their sites. Thus once again you are being given biased information. Anecdotal evidence can become a motivator for needed systematic scientific studies, especially when organised patient groups can demonstrate a large volume of patients experiencing the same outcome. An interesting move of late are pharmaceutical reviews that scour the Internet (a process known as data mining) for patient reports of previously unknown side-effects. This has been successfully used for a number of medications leading to further research. 
5. Who is funding the research?: Researchers are required to disclose their funding sources and any conflicts of interest. Are they an employee, stock holder or board member of the company who owns the treatment they are researching? Does their membership of other competing organisations impact on the way they review a medication or therapy? These factors are not always an instant negative. There is nothing inherently wrong with researchers earning money from their discovery and the reality is that without pharmaceutical companies and big business, a lot of research would never be funded, but it is still an important factor to have in the back of your mind when you examine their research. Always question, does the researcher or media representative, have a vested interest in the treatment they are supporting? Are they independent and/or does the quality of their research override any potential conflicts?
6. PR machines: Some researchers know how to use PR and marketing far better than others, irrespective of their actual expertise. The same faces are seen on television or in newspapers, and they are touted as the go-to experts in their field. Patients and their families are more likely to be drawn to their research by their level of familiarity and legitimacy conferred by their frequent interviews. Others know how to use social media to sell their treatment or theory. Sheer volume of exposure will bring them to mind when you think of particular issues. There are many well respected researchers working behind the scenes, whose conclusions are just as valid or scientifically sound yet never really see the light of day except when uncovered by highly-caffinated and half-starved doctoral students doing the hard yards on PubMed late at night rather than sleeping. Even researchers associations with particular well-respected organisations will also lead to greater media exposure and give their work an inherent elevated legitimacy, regardless of the quality of their work.
7. It is possible to create the results you want: I will go into more detail about this issue in the next post, but it is an important fact to keep in mind. Researchers can, sometimes intentionally, sometimes unintentionally, set up their study in such a manner as to create the result they are looking for (eg through the inclusion/exclusion criteria they use to select participants). All studies have a theory or treatment they are wishing to test, and through a review of the available literature studies are designed in a manner to reflect this knowledge. However, depending on quality of the researcher, the design of the study may mean that only one result, the one wished for, is possible.
8. Research is rarely simple: News media, and some groups, will cherry pick the information they want to share (often to support a particular position) and share little in the way of detail (for example, the recent media reports linking salt to autoimmune conditions, many of which did not offer information on even the basics such as how excessive salt intake was defined for the purpose of the study). Often if you read the original research paper you will find that it is not as simple as first described in the media release. Life, humans and illness are complex, multi-factorial entities. Often it is more a case of, if a person has variable 1 and variable 2, and factor 3 is accounted for, then treatment A may lead to outcome B. Good researchers recognise the grey inherent in their research and spell out their constraints and need for further research. This however, does not make for a punchy sound bite. This follows onto the next point.
9. Find the original source: wherever possible find the original source article. This at least gives you the best starting point to evaluate the validity of a particular finding or claim. Do not rely on medical reporting or social media to give you an accurate portrayal of a research study. If in doubt contact the researcher. Every research paper will have contact details listed and many researchers love nothing better than to discuss their work with truly interested parties. 
10. Not all research results are generalisable to a wider patient population: For practical purposes, research is often conducted on a limited number of people, within a limited age range, often single sex, limited ethnicity etc. Time and financial constraints as well as protocols for particular forms of research eg drug trials, necessitate these limitations, but these factors can also limit what can be inferred from any results. Whilst certain research advances may be promising, if they are only based upon 10 non-smoking, non-drinking, vegan, left-handed, Caucasian women, aged 18-20, all named Bertha, with no other medical issues than the one in question, any conclusions must be tempered by the limited subset (these are often, but not always, pilot studies, which are used to test out a research study prior to the implementation of larger-scale studies). This is particularly important when a patient population is extensive. A subset of 10 cannot be used to make sweeping generalisations about a patient population in the millions. Similarly, results from a female only study may not always be applicable to men. Always look at the characteristics of the participants involved in a study to see if the conclusions reached reflect the wider patient population or a more discreet Bertha-specific subgroup.
11. Results or treatment that are only being promoted by a single researcher: this should raise a red flag, but, and it is a big but, it is not an instant disqualification. Some now commonly acknowledged theories and treatments were widely dismissed and criticised, with the researchers involved ostracised, prior to being found to be correct. For example, the work relating to H.pylori and stomach ulcers was initially met with hostility within the medical community, but is now commonly acknowledged as correct. However, until these theories have been replicated and thoroughly investigated through longitudinal and large sample studies, by multiple research groups, it is important to keep them in mind, but with a critical eye until the evidence is in. This is particularly the case when a treatment is either risky or expensive.
12. Keep up to date: theories come and go. Scientific research is constantly questioning it's own findings and is rarely static. What may have been set in stone 10 years ago may be completely revised by current research. Yet there are many websites relying on outdated information to support their theory. A good example of this is Fructose Malabsorption. Safe and unsafe foods change frequently as research continues and more foods are tested using newer, more accurate devices. Unless a website creator is continually on top of the issue, their information may be outdated, incorrect and, in some cases, dangerous.
13. Organisational bias: there are many health sites on the web. It is important to understand and be aware of the biases that are held by those sharing the information. Be it traditional medicine or alternative therapies, there are sites which only share information that supports their position, be that a study that shows their treatment/theory is correct or that another treatment/theory are is completely incorrect or dangerous. Know your information sources.
14. Not all research is equal: The scientific method is rigorous. There are ethics committees, reviews of methodology and conclusions, and research must follow an objective stringent set of rules. It is often staged eg the phases for drug trials, and must be able to be replicated by other researchers. This is why there is often a lag, sometimes measured in decades, between the findings from those 3 over-caffeinated rats in Dusseldorf, and new therapies. Articles in peer-reviewed journals are just that, peer-reviewed. If research is shoddy it is highly unlikely to get through to publication. (I'll add a caveat here. There is some less than stellar research in some peer-reviewed journals, but the peer-review system does increase the odds of finding reputable information.) Whether you are looking at information relating to a pharmaceutical product or a natural therapy, look for appropriate, rigorous research.
15. Just because everyone is saying it, doesn't make it true: the advent of social media means that information is shared rapidly, and often without critical review. People click share or retweet reflexively and soon what was seen by one person in an obscure, fringe, e-magazine from Lichtenstein, is doing the rounds of various forums. Repeated often enough, it is easy to begin to believe what you are reading is fact. Remember Point 9. Where possible, always seek out and read the original article, so you know what you are forwarding.
16. Don't Despair: All of these points can seem overwhelming, but the more you research, and the more you apply them, the more they will become commonplace. 

These points can be applied to any type of health information, be it news media, website, medical journal or research organisation. Out of all of them I would say apply Points 1 and 2 to any health information you come across, keep your biases in check and know that scepticism is healthy. Sometimes you will find your scepticism was well placed, and other times you will find that the researcher or media outlet's claims were indeed correct. But at least you have done your due diligence.

I have nothing but admiration for those doing the hard yards, in a largely unglamorous environment, with little thanks or recognition for their efforts. You don't go into medical research for the money or for the glitz. I know this from being both a research assistant and researcher. There is simply nothing glamorous about driving around town with an esky filled with saliva samples by your side, or the collecting of those samples. But you do it in the hope that your research will help others. There are unscrupulous researchers, but they are the minority, not the majority. However, it is important to be aware that even the best researchers can be foiled by the ways in which their information is disseminated through a highly competitive 24-hour news cycle, a society that demands their information in 140 characters or less, and the way others re-interpret their results to suit their particular position. 

It's your health, and your life. Understanding, and being able to critically review the vast amounts of medical information available, allows you to take control of your care.

Cheers

Michelle :)

This week I rocked because.....Episode 5

(source)

It's that time of the week again and despite it being Friday the 13th I know there are a bazillion ways you rocked this past week. Things have been a little stressed over here at Chateau Rusty, hence my brain purge post yesterday. But I have not been deterred. In between moments of stress induced insanity, and a body that has decided that weakness is fun, I have managed to rock on and off. I put on my red glittery slippers and pulled out some rockstar moves. Because you can't keep a red glittered girl down.

This week I rocked because....

• I managed vacuuming again. I know, I know, it's an exciting life I lead.
• I had a shower, brushed my hair, and got dressed to see my neuro. All this was achieved despite feeling that I was really to keel over on the couch.
• Mr Grumpy gave me two bunches of lovely flowers, one red roses and one Autumn toned ranunculi. I divided them into a number of smaller bunches and spread colour throughout the house. So lovely and they have lasted a full week.
• I ordered a vintage styled magazine, Frankie, that I've wanted to subscribe to for ages. The first one arrived today and I am rather excited to sit down with a cuppa and read.
• I have upped my pain meds with no side-effects except that I can stand on my feet without wanting to cry now. Woo Hoo!

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 bit of music to inspire you whilst you think of all the way you rocked this week. I'm back baby, no matter what my body throws at me!

Develop all the symptoms!

I saw the above picture over on Carrie, from Just Mildly Medicated's, Facebook page today and thought it couldn't be more perfect for my current situation. If you follow me over on Facebook you know that despite Jeri's (my pacemaker) best efforts I've still had a dive in my symptoms. This is not to say that Jeri isn't doing her job. She's been a trooper, and I haven't had a collapse since she went in. Funny how a regular heart beat helps. But alas even Jeri is just not equipped to fully deal with my body.

I've had a step-wise progression. Ie I deteriorate for a while, then that stops, I become kind of stable for a while, and then I start to deteriorate again, until the next plateau, and on it goes, ad infinitum. It's been my regular pattern the past 7 years. But something definitely changed back in May. Not only did my heart decide to become a couch potato, but a host of other symptoms popped up, some new and some with an increase in frequency. As I said, "I think I may be in the "fall screaming" stage before I hit the next step plateau."

Luckily, I also had a neurology appointment coming up. Instead of my normal 'Take in my 3 Top problems', philosophy for medical appointments, I ended up with 7. Then as my appointment progressed and she started asking the right questions (because she's an ace neurologist) and Eunice (my last remaining, and thoroughly over taxed, brain cell) finally looked up from her latest edition of Woman's Day, more problems came to mind. 

Thankfully, instead of relying on my inadequate descriptive skills I also came armed with a host of photos and videos to show what my body does in these bad patches. Even more thankfully, my lovely neurologist was stoked that I had a multimedia display worked out for her, on top of my nicely set out, dot point, list in my notebook. (We may just share a love of organisation and structure.)

Thankfully again, or not depending on how I am reacting to the news in a particular hour of the day, she actually had an pretty clear idea as to why I can't walk periodically, and why the left side of my face (not unlike my boobs and sad derrière) heads south, and why my breathing gets difficult periodically, and why my meds are getting stuck in my throat, and why I can no longer squish a lemon, even with 2 hands, and..... 

You see not only do I have, as she put it on my referral for a biopsy of one of my facial nerves (that's right, they are going to cut another fricken nerve out of my body), "a very rare autonomic disorder" (so rare it doesn't even rate it's own name, though I did suggest FUBAR to her again. I do hope it takes off.) I have also developed another rare, this time neuromuscular, disorder. Because one just wasn't enough. No way, no how, baby. I'm gunna get me all the symptoms! Oh, and did I mention they are going to CUT INTO MY FACE. 

The culprit this time being Myaesthenia Gravis, or grave muscle weakness, for the less Latin-minded. Well at least that's the odds on favourite. The Black Caviar of all the potential neuromuscular junction disorders. I'll let the interested read up on it in their own time, as really I can't be arsed facing it enough to write about it in detail at the moment.

And after a a quick squizz of Medline the likelihood of having either of those rare disorders is indeed very rare. But to have them both together, to have The Universe insert the pointy end of the pineapple in my nether regions once more, and with great vigor, is pretty much rare to the power of infinity. Damn you body and your anal tendencies to do everything 110%! 

So now I am waiting on the confirmation from antibody testing and await the joy that will be the facial nerve biopsy. Admittedly there are a range of treatments, none of which are pleasant, (Mestinon and I did not part of good terms after our short-lived daliance) but it is manageable. YAY another no cure, progressive diagnosis. Just what every girl wants to hear.

And all my autonomic symptoms, small fibre, and now large fibre neuropathies are spreading/multiplying like randy little rabbits all over this sack of meat I call, my body (or Arsewipe, depending on the level of maturity of my coping skills at the time).

Oh and did I mention they are going to CUT INTO MY FACE!

Michelle :)

But I did get to up my pain meds. And my neurologist said I looked pretty, and she liked my skirt. And now every time Mr Grumpy moans about something I simply yell "WELL AT LEAST THEY'RE NOT CUTTING A NERVE OUT OF YOUR FACE", which frankly is the best come back EVER. So you know it wasn't all bad.

PS Go on over and visit Carrie over on Just Mildly Medicated, love her. She's a woman after my own heart. Taking the piss out of illness. Cracking sense of humour. And she understands and shares my love of both Game of Thrones and The Walking Dead. Oh, and she has a cape!

Florinef, I think I love you.

(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.)

I've been meaning to write this post for ages. Like many plans, appointments, ability to spell my name, it all went into the sieve that is my brain, and fell straight out again. Memory, I had one of those once. I think. Maybe. What was I doing? 

I keep repeating the same tips on various forums. You'd think given that each time I write the same info I think "I should write a blog post about this", it would spark me into action. But no. Damn those bright shiny objects! 

So here it is, finally. My tips for starting/considering Florinef. These are based on my personal experience over the last 6 years, and as stated above always check with your doctor. I have been taking Florinef since 2007. It's my longest standing medication, and the one that was the game-changer in my treatment. 

Florinef (aka fludrocortisone acetate). Ah, you sexy little white tablet, you. You are my favourite pharmaceutical of them all. You let me almost have a life, rather than being stuck in bed or frequenting the carpeting or linoleum of various clothing stores. For that I'll always love you. 

Now, I'm not advocating that all Dysautonomia patients run out and try Florinef. Nor am I being paid in cash, or macarons, by it's manufacturer, Bristol-Meyers Squibb Company.  Any medication should only be taking in consultation with your doctor. The reality with Dysautonomia is that not all medications will work for all patients. It depends on your underlying cause. It depends on your tolerance levels and side-effects. It depends on your other medications. It depends on your other disorders. Some days, I swear it depends on whether Saturn is in retrograde, or if the wind is blowing from the North-East. Often the only way to know if a medication may or may not work is to take the plunge and see what happens. Even if you see an improvement, trying to find the right dose can also be problematic.

But back to the medication in question. 

The most common concern seems to be that Florinef is a steroid, and we are all rightly concerned about the long-term side-effects of continuous steroid use. Florinef is a steroid, but it is not like it's traditional cousins. No shrinking testicles for the guys, and no five o'clock shadow for those of us of the fairer sex. It will not lead to a generation of Dysautonomia patients sporting the physique of a 1980's Eastern block female Olympic athlete. It is what is known as a mineral corticosteroid. Corticosteroids are a combination of corticosteroid hormones, cortisol and aldesterone that are produced by the adrenal glands. Amongst all their varied roles in the body, they help to regulate the water/salt balance, something of importance for many Dysautonomia patients.

At it's most basic Florinef works by helping the body hold onto salt, which in turn holds more water in the body. These two processes combines to increase blood pressure and in turn reduce the reflexive reaction of our bodies to deal with the low blood pressure, tachycardia. Clear as mud, right? If you are hypovolemic, which a large percentage of patients are, or your aldesterone levels are low, it will help to increase your blood volume. 

So what are my main tips for starting and taking this medication?

• Start low: start too high and you are more likely to encounter side-effects. Titrating (going up incrementally) your dose over a few weeks can make it far easier to tolerate. For example, if your doctor prescribes .1mg, start at 1/4 or 1/2, tablet for two weeks. At the end of the two weeks, and if tolerated, add an additional 1/4 or 1/2 tablet. Repeat until your prescribed dose is reached. I have seen many patients prescribed doses such as .2mg who start on the full dose and discontinue within the first few days as the side-effects are to severe. The simple trick of titrating your dose can save a lot of pain and mean that you can take a potentially helpful medication.
• Side-effects length: the worst of the side-effects tend to last about two weeks. If you are titrating your dose be aware that you need to allow about two weeks for your body to accommodate each change. For most long-term users these side-effects become quite minimal over time.
• Side-effect types: These are many and varied. Some of the most common are: gastric distress (nausea, cramps, diarrhoea), increase in headaches, weight gain/increased appetite, fluid retention, thinning/dry skin, easy bruising, visual changes, and decrease in your immune system. I found that I had pain in my joints, particularly my hands, with the increase in fluid. A small percentage of patients will experience psychiatric symptoms when taking Florinef. If you or your family, notice a change in your mood or suicidal ideation contact your doctor and seek medical help immediately. Hypokalemia (low potassium) is a particularly serious side-effect and I'll discuss it in more detail further down.
• Break dose in two: I haven't had this issue, but I know many patients report a slump in the afternoon as the effects of Florinef wear off and blood pressure starts to crash again. It is possible to break the dose in two to maintain a more even blood concentration throughout the day. Warning: Florinef can cause or worsen insomnia. If taken later in the day it may impact on your sleeping.
• Storage: Florinef should be stored in the fridge. Update: have just found out there are some brands (Global Pharmaceuticals, Division of Impax Laboratories, Inc.) who make a form of Florinef that can be stored at room temperature. Double check with your pharmacy if that is an option. Much easier if you could get a room temp version and keep all your medications in one place. Thanks Allisone :)
• Eat before taking: one of the most common side-effects, even after long-term use is gastric distress, eg cramps, nausea or diarrhoea. If you eat something small, even a slice of toast it lines the stomach and minimises the gastric problems. 
• Hypokalemia/Low Potassium: this is an important issue for all patients taking Florinef. Florinef depletes the body's supply of potassium. Unchecked this can lead to hypokalemia, which if untreated can lead to heart attack. I am amazed at the number of patients prescribed Florinef who are not also given a prescription for a potassium supplement eg Slow K or Dura K (note most over the counter potassium supplements do not have the needed concentrations), or told to eat a high potassium diet. Many patients have ended up in the ER thanks to hypokalemia, and although it can be treated with IV potassium, this is an unpleasant experience (it can feel like you veins are burning). Maintaining potassium levels (amongst others) can be difficult for many Dysautonomia patients irrespective of Florinef, so it is important to keep an eye on your levels. A blood test before beginning and one week post-starting can be useful to see how your body reacts. After that, 3 monthly bloods are generally adequate to monitor your levels. (Some also recommend that sodium levels are also checked, but both tests are usually included in a basic blood panel.) Drops in potassium can occur rapidly as I found out. Having run out of my Slow K and thinking 1 day wouldn't matter I started to have quite severe heart palpitations and weakness. An emergency Slow K run to my local chemist and these symptoms disappeared shortly after taking 2 tablets. 
• Water and salt: Florinef's main mechanism is to help the body hold onto salt which in turn holds more water in the body. It is important to maintain a high salt and water/fluid intake for the medication to work. Without it Florinef will not work properly.
• Blood pressure: monitor your blood pressure, especially when starting. Florinef is used to raise blood pressure in those with hypovolemia. It can be a fine line between a normal blood pressure and high blood pressure. It can also take time to find the balance between dosage and healthy blood pressure. Due to changes in your underlying disorder or your body's tolerance to the medication you may need to either reduce or increase your dosage over time. If you are starting to get more headaches or you have a history of conditions such as benign intercranial hypertension, check you blood pressure to ensure you are not developing hypertension. 
• Osteoporosis/Osteopenia: Long-term users should get a DEXA scan to check their bone density as this is a risk factor for some. Especially if you are also less mobile, not outside as much or have a family history. It's no where near the same level of concern as traditional steroids, but like everything just keep it in the back of your mind.  
• Moisturise: Florinef can make your skin very dry, especially if you have been on it for a long time. Invest in a good quality moisturiser, eg one with a high percentage of shea butter and slather it on. I have noticed that as a result of drying out my skin is also more sensitive to a range of products.
• Do NOT stop taking it suddenly: this can cause a rebounding of symptoms. As was recommended for starting Florinef, titrate down especially if you are on a higher dose. For example: I recently developed supine hypertension and my cardiologist recommended a decease in my Florinef to hopefully ameliorate the change. My first attempt at a decrease by 1/2 tablet ended with rebound migraines and more frequent blood pressure drops. I reworked my titration rate and both have settled for the most part, 2 months later.

With all of these tips ALWAYS check with your doctor before implementing. 

As with all medications it is a question not only of if it works, but the risk/side-effect/benefit issue that must be balanced. This will be different for each of us. Side-effects I can tolerate may be unbearable for others and efficacy will differ amongst patients (eg Midodrine made me feel like I was going to either stroke out or have a heart attack, and yet for others it is their most useful medication.) As such, to start taking, or continue with, Florinef will be a very personal decision.

There are no doubt other tips that I will think of after I push, Publish. I will update if I do. But until then I hope these tips are helpful.

Cheers

Michelle :)

There is a lot of information about Florinef on the Internet. 

A simple guide can be found here.
A more comprehensive explanation of the pharmacotherpy behind Florinef can be found here.

This week I rocked because.....Episode 4.

(source)

Well it's that time of week again. Time to bask in the awesomeness that is you, and all you have achieved this past week. Things have been a bit up and down this week here at Chateau Rusty, but I have been able to achieve some bits and pieces in between the swooning and general whimpering in a corner.

This week I rocked because:

• I managed to do 15 minutes on the Wii Fit, the basic yoga, for four days straight. 
• I continued to shred some more of my old work notes and forms. Very cathartic.
• I vacumed 3 rooms in the house.
• I planted a group of tiny geranium cuttings in some pots.

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 :)

Sick? You're doing it wrong.

If one more person tells me how to be sick, or, more specifically, how I'm doing it wrong, I may just....Well, I really don't know what I'll do as I have all the get up and go of a soggy tissue. But I'll think up some really snappy Looney Tunes-type scenarios, complete with over-sized anvils from the Acme company, that I'll replay over and over in my head.

(source)

Why, people? Why?

Why do you care how I deal with my illness?

Why do you think you are more of an expert about my experience than me?

Why do you instantly think I am doing it wrong?

Ugh.

There are numerous books that purport to tell me how to be sick correctly. Talk shows and magazines have interview after interview of people doing sick correctly. Family, friends, acquaintances, and strangers, fellow patients and healthy folk alike, are all lining up to tell me how to be sick correctly.

There are the "if only" brigade. If only: I ate better, prayed more, exercised every day, went to their homeopath, checked out my chakras, saw another doctor, stopped seeing so many doctors, took this medication etc.

There are also the outright rude brigade. I have been called a "fool" or an "idiot" on more than one occasion.

There are the amateur psychologists . You're depressed, you're anxious, you want to be sick, if you were more positive you'd be well etc. All decided after a two minute chat.

The "my second-cousin twice-removed's next-door neighbour's uncle's dog-sitter's dental-hygienist, had what you had and they're better now" brigade.

The list goes on. But all drive me barmy.


I've had a clanger running around my head for a while now:

"Are you depressed? Don't become one of those depressed, chronically ill people." 

One of those people.  

God forbid I should feel a wee bit down about my situation. You know the whole life-changing illness malarkey. Daily pain. Daily vomiting. Daily lack of functioning. How dare I? Damn you, Michelle. Pick yourself up woman. Don't go down that road. Next thing you know you'll be hanging out with politicians, and people who kick kittens. You know, those people.

Because feeling down, or dealing with Depression, when you are chronically ill is apparently wrong.

I have been stewing over this comment for a few months now. At the time I mumbled my way through an incoherent set of words that could have been essentially summed up as a simple, "No". After the fact, I beat myself up for all the things I wish I'd said, instead of being foiled by a combination of shock and brain fog. And then I got angry. I may have ranted at the long-suffering Mr Grumpy for a while and let off a few exasperated, FFSs. But I always wish I had the guts to ring back and say my piece. Instead, I took the less confrontational road of spending my nights ruminating on all I wish I'd said.

I've been trying to think why it affected me so deeply. I think I have finally boiled it down to 4 main points.

1. As Mr Grumpy pointed out at the time, I have more than enough reasons to be depressed. The last seven years have sucked. I have had seven years of pain, loss and increasing disability. I have pretty much earned the right to be sad, or angry, or a generally pissy person if I wanted to be. I am not, and have never been, the kind of person who cries into their cornflakes over piddly things, eg because they don't have the latest iPhone.

2. Depression isn't a weakness, or a failing of character. It isn't a choice. It is an illness and it effects millions in society. Depression is incredibly common in chronic illness communities, with an estimated "28% of people with a chronic physical condition also [having] a mental disorder". Even irrespective of developing a chronic illness, it is estimated that 1 in 5 women,, and 1 in 8 men will experience depression during their life. So is it really that unrealistic to expect that a person with a chronic illness may also be dealing with depression? If, for example, a person with Dysatuonomia also had diabetes would we go around saying, "don't become one of those diabetic chronically ill people"? Perhaps instead of criticism, there could be support? Or maybe a simple, "how can I help?" Such a negative attitude is a sure fire way to get a person to hide what they are thinking and feeling, for fear of judgement.

3. So called 'negative' emotions like sadness or grief aren't inherently bad. They are a normal reaction to what is often an abnormal or stressful situation. We have a range of emotions for a reason and some are more appropriate to certain situations than others. Being permanently perky can be just as unhealthy as permanently pessimistic. For example, laughing with happiness at a sombre funeral, not exactly appropriate. Laughing with happiness at a comedy club, pretty appropriate. If I were to stuff down my sadness every time it reared it's head, how would I ever process it and move on? Saying I'm over being sick, does not instantly make me depressed. Should I say I am absolutely stoked to be sick? Don't shut me down, with a flippant comment about not becoming one of those people.

4. I have worked damn hard to not be depressed. I had counselling for a year when I first left work and I felt like my life was crumbling. I took the steps I needed at that time. I now manage my stress and my general mental health, as I once managed my career. I am an inherently positive person, but I also work every day to find the joy in life and to keep myself moving forward. And I work double-time when this illness throws another curve ball my way. I have bad days but they are far outweighed by the good. To have all my hard work dismissed without even taking the time to find out how I am coping, is just rude. How about a high five for how well I am managing, despite a bucket load of obstacles?


I am always astonished when someone enters my life for 5 minutes and they not only have to  judge how I am managing, but tell me after that same 5 minutes, all the ways I am doing it wrong.

I have lived with serious chronic illness 24 hours a day, 7 days a week, for 7 years. I'm still laughing and putting one foot in front of the other. That simple fact says I must be doing something right. Please respect that.

Ask, don't assume.

As they say, that just makes an Ass out of U, but in this case, not so much, out of and Me.

Cheers
Michelle

Sing it, Frank!