Putting the Patient Voice into Chronic Pain Policy
“We have talked with many people in the last year who have been telling us the same thing-people in pain and their caregivers were not given a big enough voice in developing pain treatment.”
I am not going to waste your time by going through all the things you can do to help shift a cold because let’s face it, the information is out there in plentiful supply. If you need a bit…
This week’s Fibro Tip comes from Katarina at Skillfully Well and Painfully Aware https://skillfullywell.com/2017/09/06/289/ who is Living skillfully well with chronic conditions. She has…
There’s a patient in my office, crying. He is also shouting. He can’t get his pain medications. His primary care doctor has told him, “I’m not allowed to write these medications for you any…
The most frustrating thing about chronic illness is the spontaneous occurrence of another random symptom that doesn’t fit into the puzzle you already have. I have been getting these…
5 Spoonie Survival Essentials! | Katie Cupcake – Life With ME
Hi guys – welcome to my new readers, and welcome back if you’ve been here before! When I first started this blog, it was to talk about my chronic illnesses. Then my love for makeup and…
Let’s establish a foundation to the development of a healthy mindset. Living with the many ways chronic illness changes your life, places stress on your life, making you feel damaged,…
This question is simple, the answer is quite complexed. Especially, to those in the chronic illness community.
Let’s establish a foundation to the development of a healthy mindset. Living with the many ways chronic illness changes your life, places stress on your life, making you feel damaged, weakened, and even broken. As people go through life they develop active or passive attitudes depending on comfort and/or feeling in control of that situation. Often, chronic illness forces us into a self-protective, subconscious reaction by taking control of our emotional and physical surroundings.
To achieve this, we develop aFixed Mindset.
FIXED MINDSET
A Fixed Mindset is when you need to look smart and in control while internally feeling weak and out of control. In order to achieve this, you develop a Fixed Mindset and you:
Avoid Challenges
Give Up Easily
See Effort As Fruitless Or Worse
Ignore Useful Negative Feedback
Feel Threatened By The Success Of Others
This Fixed Mindset obviously leads to stagnation and the feeling of being physically and emotionally stuck.
You want to change your life and so you have to do the opposite. Our starting point is Changing YOUR Mindset.
The key to any successful life change is a Positive Growth Mindset.
POSITIVE MINDSET
The very first and most important step is, change your thought patterns. If you are thinking negatively about life and all the things around, then you should change your thoughts.
To really change your life, you need aPositive Growth Mindset.
GROWTH MINDSET
Having a Growth Mindset you can change anything in your life. The view you adopt in your life changes the way you lead your life.
Having a growth mindset means:
Seeing Effort As Path To Mastery
Learning From Criticism
Finding Lessons Of Inspiration In The Success Of Others
Embracing Challenges
Persisting In The Face Of Setbacks
The result is a better sense of free will. You create a life that YOU desire.
POSITIVE GROWTH MINDSET
Keep a Positive Growth Mindset.
Dive deep into it and urge yourself to ask even more questions.
Every person is unique,
Every person is connected with everyone
Each person needs to develop his/her personal reality.
That should be based on what is real, valid, no matter the time, place, circumstances. Then, you can develop methods, explanations, perception suitable to your uniqueness, and compatible with the rest of the universe.
If you really want to change your life, watch for my next post“The 2 Minute Rule”
You CAN Train Your Body To Know When It’s Time To Sleep
When you go to bed, and when you get up, is the cornerstone to perfectly restful and totally refreshing sleep. Learn to sync your biological clock, so your body will know when to sleep and when to be alert.
Wake At The Same Time Every Day
A good night’s sleep actually starts in the morning. From the very first moment you open your eyes, light begins a brisk morning run down the optic path and arrives at the brain – the body’s biological clock. There it stimulates the creation of a morning buffet of hormones regulating growth and reproduction. This cerebral chemical brunch controls patterns of eating, sleeping, thinking, and even memory.
Sunlight Activates The Brain
Activating your brain at the same time every morning synchronizes your body’s biological clock. Your body then has a clear direction that at midnight it’s supposed to be asleep – at noon it’s supposed to be awake. Wake up at a different time every day and your biological clock stays out of sync. You feel groggy and hungover for hours. Even when you start to feel alert after that first jolt of hot morning Java, you still never achieve the mental edge you’re capable of.
Hit the Sheets Only When You’re Sleepy
Only go to bed when you’re SLEEPY, not just tired. Sleepy, as in your eyes are droopy and you keep losing track of what people are saying to you.
Get Up! Don’t Just Toss and Turn!
Sleeping from 11:00 PM until 2:30 AM, then tossing and turning until 4, before finally sleeping until 6, will give you eight hours in bed but only 4-1/2 hours of real sleep. That can actually inhibit your sleep drive and cause insomnia. To prevent that sleep issue, when you wake at 2:30 AM, get up and go into the living room and read a book. Being up increases your sleep drive desire, and make you sleepy enough to actually fall asleep when you return to bed.
A VERY Important Point
If you can’t sleep, DON’T stay in bed. A part of your mind will begin to associate the bed with being awake rather than sleeping. That can turn on a nasty “I’m-not-sleeping!” anxiety. This kind of anxiety can “rev your engines” when you get into bed. It’s one of the most insidious – and potent – causes of chronic insomnia.
Give Yourself at LEAST One Hour
Take one hour right before bed to prepare to sleep. You need this hour to wind down, prepare your mind, and transition from the one-who-can-do-everything into the one-who-can-sleep. Unfortunately, most people do not give themselves any sleep preparation time.
According to a 2007 poll, during the hour before bed 60 percent of us do household chores, 37 percent take care of children, 36 percent do activities with other family members, 36 percent are on the Internet, and 21 percent do work related to their jobs.
DANGER – Sunday Night Insomnia
Staying up late on Friday and Saturday nights and sleeping in on Saturday and Sunday mornings is frequently the reward we give ourselves after a hard week at work. Yet that little gift – even as small as it is – is enough to upset your biological clock. When you go to bed early on Sunday – your body clock is out of sync – you will not be ready to sleep. As a result you will not be the rested, smiling, happy camper that your co-workers expect Monday morning.
Follow these simple guidelines and “Sync Your Body’s Clock – Sleep Like A Baby!”
Millions of people live with chronic pain every day in the US, and they struggle to do basic day-to-day things like getting dressed and going to the shop. Despite their constant pain, their voices are rarely heard by the media because they look ‘normal’ and it is difficult to see the cause of their pain.
Here are 20 things that people in chronic pain can relate to:
We try very hard to look ‘normal’
People often say to us that we don’t look sick, but it takes a lot of effort to look normal. We often have to nap before going out to deal with the exhaustion, and we normally take pain meds before meeting up with people.
The pain won’t pass in a few days or weeks
This isn’t a cold or the flu, and it won’t go away in a few weeks – we may live with the pain for our whole lifetime.
It’s not all in our heads
[Tweet “We are not hypochondriac’s; just because you can’t see the cause of our pain doesn’t mean it isn’t there.”]
We have dreams and goals
Just like anyone else, we have passions and dreams that we would like to achieve in our lives. We are not defined by our illness.
We are not making a big deal for no reason
We are probably in more pain that you think we are in. It can be pretty difficult to understand chronic pain, and we don’t need your sympathy – we just want to know that you understand our situation.
Sometimes it is impossible to get out of bed in the morning
Some days the pain is too bad to get out of bed, but we don’t let that get us down. In fact, we will probably Skype our friends or partners so we can have a giggle to take our mind off the pain.
We hate being called lazy
Every job is twice as hard if you’re experiencing chronic pain, so we don’t feel lazy – we feel super accomplished for getting dressed and going to the shops. Everyone experiences different challenges in life.
Chronic pain doesn’t become less painful with time
Pain doesn’t become less painful over time, but you become better at dealing with the pain. I am still in pain; I’m just not letting it rule my whole life.We don’t always have enough spoons Christine Miserandino, a woman with lupus, created the ‘spoons’ analogy to describe living with invisible pain.
When you have chronic pain, you start each day with a certain amount of spoons.
Every task, like making a sandwich, takes a spoon away from you. Once you have run out of spoons for the day, you cannot complete any more activities – your pain is too much. This analogy helps us to complete our tasks without exerting ourselves too much. [Tweet “PLEASE take the time to read “The Spoon Theory” by Christine Miserandino this is probably the BEST essay to help you understand chronic pain!”]
If we don’t work, it is because we can’t
We don’t shy away from work; in fact, we would do anything to be healthy and able to work full-time. Sadly for some chronic pain sufferers, this just isn’t an option.
Just standing in queues is uncomfortable and painful
Having to hold your body in a certain place for even a few minutes can be extremely tiring and painful, and sometimes we have to ask our friends and families for help.
Good days do happen
Some days we wake up feeling better than normal, and we get super excited! Normally we will try to be productive and social on these days, because we don’t know when the next good day will be.
So do bad days
Some days are very painful, and on these days even going to the bathroom is a difficult task. On a day like this, brushing your teeth is a huge accomplishment!
We feel guilty about not always replying to our friends
Pain can be mentally exhausting, and sometimes it means we feel too tired and ill to reply to our friends. This makes us feel bad – we love our friends and we hate not replying, but thankfully our friends don’t take it personally when this happens.
We are so thankful for the friends and family who are there for us
Often we have to ask our loved ones for help with tasks like cooking and shopping, and we are so grateful for the help. Our friends are more than just friends; they are lifelines and saviours.
Medical help can be frustrating
It can take years to diagnose chronic pain due to a lack of training, and when we find an understanding doctor, we try to keep them in our lives for as long as possible.
We don’t seek drugs – we seek pain relief
Sometimes chronic pain is treated with medical marijuana and opioids, but that doesn’t mean we seek drugs. We seek anything that will help us to control and manage our pain.
We don’t need advice (unless you have chronic pain yourself)
We really appreciate people who are trying to be helpful, but it can be mentally draining to repeatedly discuss the same pain-management methods. We always look out for ways to help manage the pain, so the likelihood is that we have already tried most suggestions.
We hope to heal one day
We don’t want to live our whole lives in pain – we want to heal and get better. We will always look out for answers and cures that could change our lives
Love and support helps us to keep going
From strangers and co-workers, the little gestures like offering to help with our bags can really help to make our lives easier.
Medical searches on Google
When you do a Google search for certain medical conditions, you can learn about their symptoms and treatments. This includes information from medical doctors about how common a condition is, whether it’s critical or contagious, the ages it usually affects, and more.
Think Less: You procrastinate less and this eases the stress that hinders our positive view of life. Feel More: Our instincts tend to lead us in the right direction. We go in the wrong direction typically because we defy those instincts.
Frown Less: Hopefully we frown less because we are happier but if not, then frown less so you don’t admit emotional defeat knowing that you can turn that frown upside down (there is hope). Smile More: When we smile more because of the positives we experience, we focus on and as a result magnify those positives.
Talk Less and Listen More: We learn more when we listen because either we change or reinforce our positions. If there is a reason to change, then be open to it and if our ideals are reinforced, then we must be thankful for the wisdom we have.
Judge Less: We do not know a person’s heart nor “their” perspective on their situation. People do not know ours so we shouldn’t judge. Accept More: Don’t fixate on what you cannot fix; accept it and move on.
Watch Less and Do More: Again, don’t fixate. If you can fix it, then do! The opportunity to “do” may pass you by if you don’t.
Complain Less and Appreciate More: Much like “frowning less and smiling more”, we must focus on the positives.
Fear Less and Love More: In this context, fearing less and loving more is about focusing on the positive “what ifs?” as opposed to the negative ones. There is always a possible downside to things but that should not keep us from exploring with a view to the potential positives. We should look at the situation, weigh the two, and then make an informed decision. If the negative results, remember, “Accept More”!
nas·cent/ˈnāsənt/ Adjective: Just coming into existence and beginning to display signs of future potential; not yet fully developed.
Three nascent sciences, gene therapy, stem cell use and nanotechnology, will come of age in the next 20 years.
Each of these sciences are in their own right pregnant with the seeds of revolutionary change, and when combined they hold the promise of curing nearly every thinkable illness. Whereas these treatments are experimental and expensive today, 20 years from now, they will be common and affordable.It’s difficult to say exactly how these technologies will converge, but combinations of any or all of these could become panaceas before long.
Stem Cells
Stem cells are like blank slates. They’re cells that don’t yet have an identity, a role. But we can assign roles to stem cells, and tell them whether to become a skin cell, a brain cell or a part of any organ we want. Granted, we’re only beginning to learn how to do this, but we’ve already grown functioning livers, bladders, ears, and lungs in laboratories by dripping little drops of stem cells onto molds. So stem cells can be used to repair damages in organs and tissue, or to simply replace faltering organs altogether. They will soon obviate the need for organ donors. We’ll instead have organ factories that make hearts, eyes, kidneys; you name it, on demand and off the shelf. Read about one man who was cured of AIDS using stem cells
Nanotechnology
Ray Kurzweil has said that computers that used to take up a whole room in the sixties, now fit in his pocket, and that these same computing powers will fit inside a blood cell within a generation. When processors are so small that they can be injected into your blood stream, you can send in billions of them to repair and regenerate tissue as it degenerates, enabling a continuous rejuvenation of all organs. If a malignant tumor is discovered somewhere in your body, a billion strong army of well trained nanobots could be deployed to defeat it. Nanotech will also enable the implantation of microchips in our brains, where they have already cured depression and anxiety disorders in test patients.
Gene Therapy
And then, of course, there is gene manipulation, which can take both a proactive and a preventative nature. Through accurate alterations in a fetus’ or baby’s genetic makeup, hereditary diseases would be precluded from ever causing any trouble in the first place. If, upon analyzing your child’s DNA, your doctor finds it predisposed to Down’s syndrome, bipolar disorder, or ADHD for instance, he will have the ability to change or fix the relevant chromosomes. One man was cured of a blood disease through gene therapy.
Which diseases will we cure?
Diseases that in 20 years will either be eliminated or that people will be able to live with via treatments:
Most cancers
Alzheimer’s
Parkinson’s
Blindness
Multiple Sclerosis
Alcoholism/Addiction
Depression
Anxiety disorders
Heart disease
Arthritis
This list is by no means exhaustive, and when looking back in 2030, it could be much, much longer.
Obstacles
Social Darwinists, religious fundamentalists and other skeptics towards game changing science will do their part to decelerate this progress, as they did with in-vitro fertilization (which continues to give the joy of parenthood to millions), gene modified crops (which continues make food increasingly affordable to the hungry masses without the prophesized side effects) and on countless other accounts.
But in the end, reason and compassion will prevail, as it always does in time.
Disease eradication goes hand in hand with prosperity. Many poverty stricken populations, notably in sub-Saharan Africa, suffer needless deaths from Malaria, AIDS and Polio. Those are all perfectly treatable diseases (indeed most HIV positive patients from the industrialized world are now able to live full lives), yet, without the most important prerequisite for medical progress – wealth – many Africans remain defenseless in the face of for instance Malaria. They can’t afford to keep their cattle in barns, they have no houses with sealed windows behind which to hide at dusk and dawn, and they can’t afford treatment once infected. Africa will be the last continent to reach economic prosperity, and subsequently the last to enjoy the health benefits that accompany affluence.
But that day too will come – in our lifetime.
EDITORS NOTE: As a futurist, I make predictions of what I think will happen based on my research. These are predictions I hope I will live to see. There is a good chance that these treatments will extend my life long enough to allow me to see my predictions come true!
The guy who jumps onto subway tracks to save a stranger with a train approach
The clerk who chases down a robber,
A passerby stops at an accident site to save victims:
When you hear stories of incredible acts of courage,
Do you wonder, would I do the same?
Some scientists say those risk takers are wired differently, Studies show genetics play a significant role in the willingness to take risks. Recent research finds environmental factors and emotions greatly influence risk-taking behavior too. Other scientists look to brain mechanisms for answers:
“The best things in life are on the other side of fear!” – Will Smith
A great example of this situation is explained by Will Smith when he went skydiving. He explained this “The concept of fear” is only present up until the point where he took action.Immediately afterward he was in the moment – after he left the airplane it was pure bliss.
Courage and muscle have a lot in common.
The more they are used them the stronger they become. Neglected they slowly become frail, weak, and atrophied.
Make a list, a long list of everything thing that scares you and slowly tackle each one by one. Start small and build up. Just like exercising a muscle – exercise your courage. The more often you do so the stronger it will get and the more confidence you will build to tackle bigger and bigger challenges.
Let’s look at some easy ones you can try.
The Coffee Shop Challenge – Go to your area coffee shop, place your coffee order, and when you’re ready to pay – Ask them for a 10% discount.
The Eye Contact Challenge – While walking in public, make eye contact with the people you pass. Keep eye contact until one of you break it. It’s important that you keep an open/warm/positive expression on your face (you don’t want to look scary or crazy).
The Laying Down Challenge – Walk into a crowded place and lay down for 15 – 20 seconds. Do not select a place where you will be a nuisance. If someone asks what you’re doing, just tell them you’re taking a break and collecting your thoughts.
The Cold Shower Challenge – This is one of my best discoveries: The last 2 minutes of my shower I turn off all the hot water and blast the cold. It’s something that I do because I feel great afterward. I do it instinctively now, without hesitation or thinking of it, but when I got started I would get really nervous before doing it. On a lesser scale, it’s like that skydiving example – it’s scary before you do it, it’s intense while the cold water is flowing, it’s amazing afterward.
“Courage is not the absence of fear, but the capacity to act despite our fears.” – John McCain
Public Speaking Challenge – There the old saying that people are more afraid of public speaking than they are of dying. There are many sources of information across the internet. Why? Because almost everyone has a fear of public speaking.Toast Masters is a great way to practice!
You should definitely find things that make you so nervous that you feel it in the pit of your stomach. The more you practice, the stronger you will become!
There are many different kinds of courage required in life, and you will hardly find one person who has them all.
Some people are fearless when approaching girls/guys or standing up to bullies. Going to the gym as an overweight person, the safety of a steady salary to become an entrepreneur, quitting an addiction, ending toxic relationships, chasing your dreams etc.l
Courage isn’t a habit you can form, but a choice you must make that doesn’t get easier each time.
Now that your path becomes more organized and clear
You will begin to like you.When you begin to like you, you will do what you like.
[Tweet “When you begin to like you, you will do what you like.”]
If you believe in being brave, you will be brave.Just believe and become. But first have a clear mind to focus, remove the things pulling you back.
Scientists don’t know for sure if being courageous is something you’re born with; they also don’t know whether we can target the parts of the brain active in overcoming certain fears. What experts do know is that many different behaviors and traits define a courageous act, some of which can be learned.
[Tweet “Big challenges produce big courage!”]
Practice courage often. Display it by doing and trying different things. Things Like being unique, or facing a fear. Big challenges produce big courage but small ones every so often maintain its strength.
Do what scares you. Quieting your fear of is putting yourself in the thick of it. Plus, by choosing to face your fear, it gives you a feeling of control. Believe in your own ability to achieve a goal and a component of courageous acts.
Plan to be brave. Being prepared may help you draw on that reservoir of courage; the moment of indecisiveness is when your emotions come in.”
Remember the why. Courage is more than just facing fear; it involves taking risks for a noble or good cause. Focus on the reason you wanted to take an action to help boost confidence. When that reason is important or morally right, it may be the most encouraging of all.
I have been listening to a Dr. Jeffrey Thompson music album entitled “Insight and Intuition,” one his many works that I appreciate almost every single day.
Here are some of the reasons why I love his music:
His music includes brainwave entrainment.
Brainwave entrainment is any procedure that causes the brainwave frequencies of a person to synchronize with a periodic stimulus, such as a sound or vibration, having a frequency corresponding to the intended brain-state.
The various brainwaves include gamma, beta, alpha, theta, and delta.
Gamma waves correspond to heightened perception. Beta corresponds to wakefulness. Alpha corresponds to relaxation, daydreaming, and meditation. Theta corresponds to deep meditation and dreaming. And delta corresponds to deep sleep.
FIXED MINDSET
POSITIVE MINDSET
POSITIVE GROWTH MINDSET 
You CAN Train Your Body To Know When It’s Time To Sleep
Staying up late on Friday and Saturday nights and sleeping in on Saturday and Sunday mornings is frequently the reward we give ourselves after a hard week at work. Yet that little gift – even as small as it is – is enough to upset your biological clock. When you go to bed early on Sunday – your body clock is out of sync – you will not be ready to sleep. As a result you will not be the rested, smiling, happy camper that your co-workers expect Monday morning.
Three nascent sciences, gene therapy, stem cell use and nanotechnology, will come of age in the next 20 years.
Ray Kurzweil has said that computers that used to take up a whole room in the sixties, now fit in his pocket, and that these same computing powers will fit inside a blood cell within a generation. When processors are so small that they can be injected into your blood stream, you can send in billions of them to repair and regenerate tissue as it degenerates, enabling a continuous rejuvenation of all organs. If a malignant tumor is discovered somewhere in your body, a billion strong army of well trained nanobots could be deployed to defeat it. Nanotech will also enable the implantation of microchips in our brains, where they have already cured depression and anxiety disorders in test patients.
And then, of course, there is gene manipulation, which can take both a proactive and a preventative nature. Through accurate alterations in a fetus’ or baby’s genetic makeup, hereditary diseases would be precluded from ever causing any trouble in the first place. If, upon analyzing your child’s DNA, your doctor finds it predisposed to Down’s syndrome, bipolar disorder, or ADHD for instance, he will have the ability to change or fix the relevant chromosomes. One man was cured of a blood disease through gene therapy.
Disease eradication goes hand in hand with prosperity. Many poverty stricken populations, notably in sub-Saharan Africa, suffer needless deaths from Malaria, AIDS and Polio. Those are all perfectly treatable diseases (indeed most HIV positive patients from the industrialized world are now able to live full lives), yet, without the most important prerequisite for medical progress – wealth – many Africans remain defenseless in the face of for instance Malaria. They can’t afford to keep their cattle in barns, they have no houses with sealed windows behind which to hide at dusk and dawn, and they can’t afford treatment once infected. Africa will be the last continent to reach economic prosperity, and subsequently the last to enjoy the health benefits that accompany affluence.
