Tuesday, April 17, 2018

Managing Chronic Illness: 06 - Dealing with Medical Professionals (without killing them or yourself)



IMPORTANT: You Are The Client. You Are Paying For A Service

If you only read one line of this blog, I hope it is the one directly above this one.

Doctors are well paid. Even in Australia, where you personally don't pay much, they are being well paid. To the tune of hundreds of dollars and hour. They are being paid hundreds of dollars an hour to treat you and manage your health care needs, and if you let them get away with NOT doing those things, they are still getting paid. They are getting paid for doing nothing. For providing a terrible service. And its all tax payer money going to waste.

Put on your goddamn 'can I speak the manager' face. Make it very clear what the roles are. You are not a child, to be lectured. You are not 'lucky' to be seeing them. They are being paid A LOT OF MONEY to treat your medical conditions, and part of that is treating you with respect and dignity.

And if they fail on any of those counts, you are within your right to voice your complaints.
And you can voice those complaints to the Health Ombudsmen. For more info on that, go here:
http://www.abc.net.au/health/consumerguides/stories/2003/02/20/1837237.htm


Shop For A Better Doctor

Furthermore, if you are unhappy with your doctor, find another one. I know finding a new doctor is a pain, I know every time you meet a new doctor it is stressful, disheartening and often embarrassing. Its rare that chronic illness doesn't come with elements we don't really want to talk about. However, staying long term with a doctor who you dislike, who id disrespectful and makes you feel miserable, is going to have a long-term impact on your health. You'll avoid going to see them, even when you need to, and they will probably miss key diagnosis, that could prove fatal. Worst still, there may be a simple, safe treatment option you are never offered, because they didn't do the research.

I have some tips for finding a good doctor though.

1. Try a lot of them. If you decide one of the earlier ones needs another chance, or was the best of a bad bunch, go back to them.

2. Ask for recommendations, either from local chronically ill friends or online in chronic illness groups and forums.

3. Take a printed sheet that outlines everything clearly. This should include your current medications, any allergies, current symptoms and any previous diagnoses, along with a concise, but detailed medical history. Make sure to include any drugs you have tried in the past, and why you stopped taking them.

Ask them to scan it and put it in your medical file.

Its generally a good idea to keep an updated medical file like this at all times. On your computer, at least, or even printed on your person in case you end up in ER. It will be helpful for doctors, and it will also protect you in several ways. First, it will spare you from forgetting anything. And secondly, you have a printed record of what you have shown a doctor, and you have watch them read it. So, in the case of negligence, you can hold it up in court and say: "This is the print out they were given. It was scanned and is in their computer system."


Its Better To Go Away, Do Research, Then Come Back

If a doctor suggests a treatment plan, a new medication or any other long-term changes and it is not something you are already well educated on, its worth going away, researching it and coming back with questions when you are better educated on the topic. This is particularly relevant for medications that have dangers side effects, and any exercise or weight loss plans.

Doctors generally don't want to answer a lot of questions about these things, because they often haven't done the research themselves. This should be a huge red flag for you. Doctors should know what they are prescribing, and they should have read the research on success and failure rates before they suggest a course of action.


Know What Questions To Ask

Words are hard. I'm an author, my life is all about how hard words are. However, you'd be surprised what you find on google, if you know what to key words to search for. Try searches like:

'Things to ask your doctor about weight loss.' (About 33,300,000 results)
'Things to ask your doctor about diabetes.' (About 2,770,000 results)
'Things to ask your doctor about new prescriptions.' (About 3,980,000 results)

Make a list. Print that fucker out and leave space to write down their answers. Let them see you writing down their answers. Trust me, they really start paying attention and doing what they're supposed to when they see you taking notes.

Taking notes is also fantastic for when you have brain fog later and have no recollection whatsoever of what was said.


Have An Idea What You Want Before You Go In

You know those jokes about men being clueless to what women want? The sexist ones that infantilise men and allow them to get away with bad behaviour? Yeah, I hate those. But apply them to your doctor.

When to visit a doctor, state the problem you are having very clearly, but then also state the OUTCOME you want very clearly.

EG: Problem: "I have a terrible pain in my upper right abdomen."

Outcome: "I want this problem investigated until we have a definitive cause, however many tests that takes."
OR: "I believe it is X, but it is stopping me from achieving X. I want a pain management plan that addresses it, allowing me to do X."

Giving them a very specific goal to work toward is best for you and them. It tells them what you expect and that you aren't going to stop hounding them until the goal is achieved. It gives them a starting and an ending place for the issue.

If possible, gently encourage them to repeat the desired outcome, out loud. Say something like: "Just so we're on the same page, what is the desired outcome here?" If they can't repeat what you literally just said, rinse and repeat.


Don't Be Afraid To Remind Your Doctor To Do Their Damn Job

Once I described a problem I was having to my doctor.
Doctor: "Mm, yes, that does sound frustrating. I don't know what would cause that."
Me: "However its your job to find out what is causing it, so how are we going to go about that?"

He looked surprised. He ordered tests. You don't have to be rude or confrontational, in fact, I would say that would hinder you, but you do have to be firm and confident. This is their job. Their job is to make diagnoses and prescribe treatments that will fix or alleviate the health problem you are having. They are being paid a lot of money to do this.

If you hired a cleaner and they came to your house, played your CDs for a bit, and then left, you wouldn't pay them. So why are doctors getting paid for NOT DOING THEIR DAMN JOB?

Mostly, its because we feel inferior to our doctors and superior to our cleaners. And we are wrong to feel that way on both counts. In both cases, we are a client, hiring a professional to provide us with a service. We should treat them with equal respect and have equal expectations that they do the job they are being paid to do.

Doctors are not holy beings. They are not better than you. They are a professional, providing you with a service. And you have every right to receive the service you are paying for.


So that's it. My guide for dealing with medical professionals without killing them or yourself. I hope you got some tips from my many, MANY years dealing with hundreds of doctors. I have had some truly bad ones. From doctors who have been verbally abusive and negligent, to doctors who meant well, but almost killed me anyway.

Thankfully these days, using the tools and methods I have discussed, I have a great GP and a truly brilliant physician assisting me with my medical care. They're not saviours, I won't be throwing them a parade any time soon. They are professionals who do the job they are paid to do. I find them enjoyable to speak to, pleasant to be around and helpful when it comes to my frankly very difficult medical situation. I wouldn't ask for better.

I hope you can find the same.

Tuesday, April 10, 2018

Managing Chronic Illness: 05 - Socialisation, Time Management & Goal Setting.




The Important and Benefits of Socialisation.

Humans are highly gregarious and social isolation is cruel and damaging. What a shame then, that the most isolated people tend to be those who least deserve it. The elderly and the chronically ill.

Isolation is damaging to your mental and physical health, in contrast, people with strong, healthy community ties, live longer, are happier and are healthier. So, there is a lot of reasons to develop and maintain a healthy social community.

It is difficult when you are chronically ill, but not impossible. The internet means you can connect with others from your bedroom, from your bed. Even while you are on the toilet. I am sure most of us find face to face contact much more rewarding and stimulating. However online bonds can be just as close and deep as face to face ones.

Most of my friendships are maintained almost entirely online. One of my dearest friends, Annie, and I have been talking online for two hours, every day, for over fifteen years now. These days we usually skype—using voice chat while we play a video game together or even watch a movie together.


The Best Socialisation Tools for The Chronically Ill.

You are probably already aware of many of the tools available to the chronically ill. Twitter, facebook, skype, Instagram, tumblr, etc. These are online platforms that allow you to find a community and interact with people within that community.

However sometimes that can still be very isolating. As it seems like everyone else is out doing fantastic things and you aren't. I suggest you focus more on the connection aspects, than the feed aspects. Use these tools to have CONVERSATIONS not to look in on other people's lives.

Most days, I try and find the time to message one or two people to see how they are. Some are too busy to respond, some who are equally isolated will happily chat to me all day.


Time Management and Chronic Illness

Chronically ill people have to be time management experts. If you aren't, life becomes a complete and utter disaster. Its always a balancing act between commitments and spoons (Spoon theory: https://en.wikipedia.org/wiki/Spoon_theory) and when you are going to have the time and energy to get things done. I don't think I have ever met a chronically ill person who can do things spontaneously. There is no such thing as: 'Hey, are you free? Let's grab coffee.' Everything is organised weeks in advance and even then, commitments can be hard to stick to, because illness is always getting in the way.

Usually, for important commitments, you not only need to plan that day, but the days leading up to it in a way that you will have the energy to go out. There are enforced rest days, or at least, days you know you need to stay home and not do anything too exciting, so you are well enough to go out the day after. Then there is the knowledge that you will be useless the following days.

I think most chronically ill people do this out of necessity. However, if you are still fighting it, take my advice and stop. Get a day planner. Schedule in rest days before and after major outings. Let your day planner remember commitments for you. Accept you can only be spontaneous once a year. Its nothing to be ashamed of. People are impressed with highly organised people too, I promise.


How I Manage My Time

There are a lot of ways you can manage your time and you will know what is best for you. I'm not going to suggest my methods are best, or even good, for most people. However, they might give you some ideas to improve the system you already have in place. There are four main elements to my system and they are outlined below:

1. Primary Project

I have one long term goal that is my primary project. This is usually a book I am working on. So, it may be in first draft or editing stage. Rarely, it will be a website or cover art. Usually a primary project will take between a week and three months to complete, so it will be with me for a while. It is always in the most prominent slot in my day planner and I try and do a little bit on it every day, even if it's just one page or 100 words.


2. Secondary Project

Secondary projects are projects that can, ideally, be done in one day and are usually a single part of a larger project, or an ongoing responsibility. For example, planning all my upcoming tweets for the month might be a secondary project. Cleaning out my inboxes. Researching something. Feedback for another writer. These would all be classed as secondary projects. Ideally, after I have done a few hours of work on my primary project, I will also complete a secondary project, so that other areas of my life keep moving forward too.


3. Day planner.

I live and die by my day planner. If something isn't in the day planner, it isn't happening. I only buy day planners with a full day for each day of the week—no shared page for Sunday and Saturday. Every day I put a word, editing and kilometre tally at the bottom, which go up throughout the month. I list my primary and secondary project, then all the things I have to do every day. These include medication, cleaning the house and feeding the pets. I also have a list of things that I contribute a small amount too, such as blogging (200-1000 words a day), reading (a chapter or more), journaling and praying.

Of course, if there are any events or appointments, they get pride of place. I also write in the birthdays of people I am very fond of, so I don't forget them.


4. Habitica

Habitica is an online habit tracking platform. My set up actually has a lot of cross tracking with my day planner. There are three columns in habitica: Habits, Dailies and To Dos.

My dailies section mimics my day planner almost word for word, and I check things off there and on my day planner when they are done each day.

Habits is for things I want to do more of, but don't do every day. Things like gardening, messaging friends to socialise, brushing Charlie, drawing or painting, etc. You can also add habits you want to stop there, and punish yourself when you do them, if you want.

To-Do is where you add one off things that need to be done. Most of my 'Secondary Projects' are listed here. So, when I am choosing what to do for the day, this is my reference list. I prioritise the most important and add that to my day planner for the day.

Habitica also has a rewards column. Since you earn 'gold' for completing tasks, you can list rewards and 'buy' them when you earn enough. I have 'buy a book' for 1000 gold on my reward, which allows me to buy a few books a month on amazon.

You can set up your own habitica account here:


Setting Realistic Goals So You Don't Make Yourself Miserable

I am planning a happiness project with will delve into this further, but comparison is the heart of all misery. You are always going to get stressed and upset if you compare what you can do to what healthy people can do. You are always going to feel poor if you compare your house to the houses of billionaires.

When it comes to goal setting when you are chronically ill, you need to be able to classify actions properly. What do you NEED to do every day? EG: Eat, feed pets, take medication, drink, etc. What SHOULD you do every day? EG: Shower, exercise, tidy, etc. What is your biggest long-term goal? How can that goal be broken down into actionable chunks that are realistic for you to do every day.

For example, if your long-term goal is writing a novel, writing most days might be your actionable task. However, if you say you need to do 1000 words, you're more likely to do zero. Because its too hard, so there is no point trying. 100 words is doable. If you make 100 words your every day goal and everything after that a bonus, you're going to get much higher word counts than if you set your goal as 1000 words.

Reward yourself, don't punish yourself.

And don't compare what you can do to what other people are doing.


Next week, we conclude this series chronic illness series with the post: 'Dealing with medical professionals without killing them or yourself.'

Tuesday, April 3, 2018

Managing Chronic Illness: 04 - Medication And Exercise.


Oh, the catch 22 of exercise. Being fitter will make you healthier, but exercise itself makes you sicker. Is there any greater bane to the chronically ill? Possibly people saying: 'You would be healthier if you exercised more'.

How To Exercise When Chronically Ill:

First, you know better than anyone else what you are capable of. And if anything, most chronically ill people are prone to push themselves TOO hard and make it much worse for themselves. So be realistic about your goals and be realistic about how much you can do.

First, define why you want to exercise. For me, it is about promoting blood flow and keeping myself as physically able as possible. I don't want to get weak joins and I don't want my stamina to drop so low that I can't do things on the days I am well enough to go out. I'd also like to lose weight, but more about that later.

Secondly, once you have decided WHY you are exercising, you must choose exercises that are suitable for you, and suitable for your goals. It might be slow, low impact exercise like slow walking is best for you. Or maybe short bursts of high intensity. You know what is best for me? Swimming. Medium intensity, but most importantly, I can't overheat. Which is my biggest problem with exercise. You know what I don't have easy access to? A pool or the beach. I drive to the beach when I can, but that is much, much less often than I would like.

Thirdly, think outside the box. Can you lift cans of food while watching TV? That's exercise. Can you do leg lifts? Squats? If some parts of your body don't work, how can you isolate and exercise the other parts? What can you do in your living room with a small amount of space. Can you do a dance routine? I promise youtube has hundreds more exercise tutorials on it than you could ever complete if you dedicated your life to trying. You don't need fancy equipment or a trainer and you don't need to exercise the parts of you that don't work well.

Fourthly, did you do ten squats and give up? That's okay. Do ten squats tomorrow. Maybe build up to 11. Then 12. Move slowly. A tiny bit of exercise is still doing you good. Don't beat yourself up because you can't do what a 'healthy' person can. I hate to break this to you, but you aren't healthy.


When Your Doctor Wants You To Lose Weight:

I am going to talk about weight in this blog post, but there will be no fat shaming. And I hope most of you know me well enough that you thought this was a given.

The biggest problem with being overweight and chronically ill, is that doctors, nurses and random people with no right to an opinion will blame many of your symptoms on your weight. It is, of course, more likely that the reverse is true. Being chronically ill makes it almost impossible to eat as well as you want or exercise as much as you want. And in some cases, your illness may be the direct cause of your weight, particularly if you have POS or any kind of inflammation or sleep disorder, along with a lot of mental illnesses.

There are, however, some benefits to weight loss I want to talk about. Two of these, I don't WANT to be true, but however horrible, they are true and until society changes, we are going to have to live with them:

1. It's easier on your joints.
Carrying around a lot of excess weight, regardless of if the weight is part of you, or not (boxes, books etc) is hard on your joints. As is repetitive use of said joints. I know a lot of writers with bad hands and wrists, I know a lot of removalists or warehouse workers with shot backs and I know a good number of overweight people with shot knees. And, of course, if you have bad knees, it's going to be harder to move around and you will gain more weight, and the terrible cycle continues.

2. It's easier to exercise.
There are some amazing overweight athletes and all of my healthy overweight friends can run rings around me. However, it’s a lot easier to exercise when you are carrying less weight. At my heaviest I was over 90kgs and dragging myself up a hill was a nightmare. It still is, but with a 20kg back pack on, I probably wouldn't make it now.

3. It's easier to make doctors take you seriously.
Being fat could kill you. Not because of the fat, but because some asshole doctor is doing to blame your fatal condition on your weight. It happens ALL THE TIME. As in, daily. I have no stats on how many people die per day from treatable conditions that were misdiagnosed because they were overweight, but I do have enough stories just from friends to terrify me. Find a good doctor who isn't a fat-phob, warn people away from the fat-phob doctors you do meet. But also accept that in an ER, your great GP isn't going to save you.

4. I will relieve some psychological pressure.
It doesn't matter how much to love your curves, every time someone makes a negative comment, you probably die a little inside. I wish I could be there to punch every single negative person in the face before they speak, but I can't. And you're still going to be bombarded with skinny models and actors and advertising telling you to be ashamed and that you are only beautiful if you are thin. I know in this context losing weight is essentially 'giving up', conforming to make the bullying stop. And yes, that's exactly what it is. We live in a dystopian hell and sometimes you have to do whatever it takes to survive here. 


Medication Sucks

No one enjoys taking medication. Even addicts don't enjoy it, addicted or not, it something we do to cope. To hopefully make things a tiny bit better—either by keeping us alive or removing some symptom we suffer through.

It can be difficult to balance our medications, they can be dangerous, disruptive, and come with a lot of complicated feelings. Its hard to take pills of any kind without feeling there is something 'wrong' with you, even when logic argues that we need it.

Its up to you to use common sense when it comes to your medication. Logic should trump emotion. Take your pills when you should, and acknowledge your negative feelings about them. Journal about them, if it helps. Here are some other tips:


Question. Your. Medication.

At least once a year, I like to re-assess and re-trial all my medication. Depending on what medication you take, this may be dangerous, impossible or relatively easy. You can book a meeting with a pharmacist in Australia, who will meet with you and go over all your medications looking for potential clashes and interactions. They can also talk to you about side-effects you might be treating as symptoms. Symptoms evolve and change and if you have been taking a lot of medications for a long time, symtoms that are getting worse may be from the medication. EG: I took Panadol almost daily for 20 years. Recently when my headaches just would not ease, I spent a week with NO painkillers, not even Panadol. It was hell. Not going to lie. However, one of the new aspects of the migraines eased up, only to flare again when I tried the Panadol again. I can no longer tolerate Panadol and I have had to adjust my medication schedule accordingly. It used to be I couldn't take nurofen without throwing up, now I handle it just fine.

Likewise, an old migraine medication I took for ten years suddenly started giving me seizures. You change, your symptoms change and your reactions to medications change. Anything you are on long term needs to be re-assessed regularly to weed out illnesses-disguised-as-cures.

Research New And Alternative Medications.

I don't mean alternative therapies. Don't switch your Naltrexone for crystals.

Don't disregard vitamins and herbals just because they are 'simple'. Let's be honest, after years of chronic exhaustion, we would feel stupid if our condition was treatable by something as simple as a vitamin. Iron, or vitamin D, or Vitamin B. However, this is literally a best case scenario. Feeling better from taking a pill with no side effects, no prescription, no long term harm.

I'll tell you something else, a lot of 'hardcore' drugs are just complicated versions of simple things. Medications are just compounds of other things. Most of us know penicillin is derived from mould. All drugs are derived from something and sometimes the only reason a herbal supplement is not an expensive prescription drug is because pharmaceutical companies have not isolated the right compound yet.

Valerian root and turmeric are two fantastic examples. Valerian, when concentrated, is a better sleeping agent than any commercially available sleeping pills. But it also dangerous. So the valerian you get from blackmores is very mild. Because pharmaceutical companies don’t know WHY valerian makes people sleep, they can't turn it into a sleeping pill yet. But they are trying. Meanwhile, Valerian is not taken very seriously by anyone as a sleeping aid, even though we KNOW it is more effective.

Turmeric is the same. With pepper, it is proving very effective at treating certain conditions, just as Indian medicine has been saying for centuries. However, the active compound isn't known, so pharmaceutical companies have been releasing rather misleading studies claiming turmeric has no effect. Really, the specific compound in turmeric they tested had no effect. But in spreading these results, they drive people away from using turmeric and back to their other prescription products.


Remember Health Is The Goal.

Your goal is always to be healthier in the long and short term. We need to stay fit, flexible and strong enough that life doesn't become more difficult for us. But we also don't want to make ourselves sicker trying to overdo it.

Likewise, we want our pills to improve our situation, not make it worse, and that means a lot of trial, error, research and inconvenience, which can often leave us struggling in the short term, but is hopefully beneficial in the long term.

I'm not a big fan of doctors, but I hope you have one you can trust to speak to before you embark on any medication tests or exercise routines. Who knows, they might even have some good ideas.


Next week: Socialization, time management and goal setting!