Just How Do I Define Invisible Illness…….I Do It By #lightingtheflame 🔥

So how do I define invisible illness; I could say it’s an illness or disability that is hidden or not apparent, but that doesn’t even begin to define what some of these illnesses really are, or how they impact the many millions that live with them everyday. You see, some people with sight or hearing disabilities may not wear glasses or hearing aids, BUT they are invisibly disabled.  Someone that may have to sit day in, day out because they have chronic back or joint problems sitting, can be categorised as having a invisible impairment. Invisible disability/ illness creates so many challenges for the people that live with them. There are so many more examples that I could give to define a invisible disability. The reality of invisible illness or disability, is that they can be so difficult for others to recognise or acknowledge. This makes it  difficult to understand the cause of the problem or problems, because they can’t see evidence of it in a visible way. So these invisible conditions have been captured under an umbrella term that captures the whole spectrum of hidden disabilities, known as ‘invisible illnesses’. Having so many illnesses and conditions under the one umbrella, means it is so hard to decipher and diagnose what is actually happening to a person that presents with unseen symptoms.

People with invisible illnesses can find it difficult to  make others understand how their  symptoms of such things as extreme fatigue, dizziness, pain, can be so debilitating.  This misunderstanding, will in many cases be met with hostility, judgement and stigma by the bigger community and world.

People living with invisible illnesses and chronic pain are often accused of faking or imagining their disabilities. These symptoms are real, they can occur due to bouts of chronic illness, chronic pain, injury, birth disorders, they can even just come out of the blue and most importantly are not always obvious to the onlooker.

 Many millions of people around the world, have a medical condition which could be considered a type of invisible illness or disability. Let me explain it this way, there are many that have a chronic medical condition of one kind or another, some of these people are not considered to be disabled, as their medical conditions do not impair their normal everyday activities. These people do not use an assistive device and most look and act healthy. So I’ve explained one side of illness invisibility, this is the other side, the side that causes and increases what can be debilitating physical or mental impairment that can lessen one or more major life activity.  

It saddens me that when somebody sees a person in a wheelchair, wearing a hearing aid, or carrying a white cane, it tells us a person is impaired in some way. But for people living with invisible illness and/or disability living is a bit more difficult for many people in the world to acknowledge. 

Invisible illness and disability can and do significantly impair normal activities of daily living.
Examples of Invisible illness Disability vary, here are just a few;

• Chronic Pain can be the cause from a variety of conditions. A few reasons for chronic pain may be because of back problems, bone disease, physical injuries, and many more reasons. Chronic pain may not be clear to people who do not understand the specific medical condition.
• Chronic Fatigue is a type of disability that refers to an individual who constantly feels tired. This can be extremely debilitating and affect every aspect of a persons every day life. It is totally invisible to the greater community.
• Mental Illness is a term for many illnesses of the mind. Examples are depression, attention deficit disorder, schizophrenia, agoraphobia, bipolar and the list goes on. These illnesses can also be completely debilitating to the person suffering and can make performing everyday tasks extremely difficult, if not impossible.
• Chronic Dizziness is often associated with problems of the inner ear, chronic dizziness can lead to impairment when walking, driving, working, sleeping, and other common tasks.

I hope you are beginning to see that being invisibly ill, effects many areas of health which effects many areas of life. Many people living with a hidden physical or mental challenge are still able to be active in their hobbies, work and even be active in sports, but their are others that struggle just to get through their day and cannot work at all. 

I want us all to be able to come together in understanding the true level of invisible illness and disability. Because, when we do we will truly begin to see awareness and support bringing better research and thus treatments. 

I will finish today with a list of invisible illnesses that I’ve been creating to show the world just how wide the umbrella is…….but even I may have forgotten some. If I have, please let me know and I will add your illness/disability to the list;

INVISIBLE ILLNESSES 

ADHD

Anxiety disorders

Allergies

Arachnoiditis

Asperger Syndrome

Asthma

Autism

Bipolar disorder

Brain injuries

Chronic fatigue syndrome

Chronic pain

Chromosome Duplication

Chromosome Triplication

Coeliac Disease

Conversion Disorder 

Crohn’s disease

Depression

Diabetes

Ehlers Danlos Syndrome

Endometreosis

Epilepsy

Fibromyalgia

Food allergies

Fructose malabsorption

Functional Neurological Disorder 

Hypoglycemia

Inflammatory bowel disease

Interstitial cystitis

Irritable Bowel Syndrome

Lactose Intolerance

Lupus

Lyme Disease

Major depression

Metabolic syndrome

Migraines

Multiple Sclerosis

Multiple Chemical Sensitivity

Myasthenia Gravis

Narcolepsy

Personality disorders

Primary immunodeficiency

Psychiatric disabilities

Reflex Sympathetic Dystrophy

Repetitive stress injuries

Rheumatoid arthritis

Sarcoidosis 

Schnitzler’s Syndrome

Schizophrenia

Scleroderma

Seizures 

Sjogren’s syndrome

Transverse Myelitis

Ulcerative Colitis

Invisible illness and/or disability creates challenges for the people who have them. I’ve said it before and I will say it again and again, the reality of these conditions can be difficult for others to recognise or acknowledge. You may not even understand the cause of the problems, because you cannot see evidence of it in a visible way. So, I say to you – YES, YOU out there in the big wide world, if you can’t see something, how can you judge it! Let’s begin walking together supporting those that are impacted by the many forms of invisible illness. Let’s raise awareness and bring about more real life research so better information and treatments can be formulated to change the way we all see and relate to invisible illness and disability.

If you’ve liked this post, please let me know and if we haven’t connected on social media, let’s do so here;

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Much love to you all
TBG 💋

That’s The Thing About Pain….It Demands To Be Felt 🙏🏻

People who suffer from severe, chronic pain and illness know how it can change life. It is so very cruel making it hard to enjoy even the most simple daily tasks. Chronic pain as illness is still not that well understood. The medical industry used to believe that pain was a underlying injury or disease. With these thought patterns doctors focused on treating the underlying cause of the pain, with the belief that once the injury or disease was cured the chronic pain or illness would also disappear. If doctors found no underlying cause  for the illness or pain, then the patient was told that very few treatments would be available, or worse, “the pain must be in your head.” It’s sad to say, but some doctors still practice these thoughts , having no appreciation for the unique problem of newer theories about chronic pain and illness.

Luckily there is a new community starting to understand that if pain or illness is no longer a function of a healthy nervous system then the chronic illness/pain itself becomes the problem and needs to be treated as the primary point of call.

We the chronic pain and illness patients need to stand as one, to raise awareness so that more conversations are started and more research for information and treatments are given.
Do you walk through life with chronic pain or illness- if so please connect with me! If we all walk together, our global governments and health care departments will need to listen and make appropriate choices and changes.

Connect with me today on one of my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
Let’s walk together for our health

Lisa-Raie 💋
“Wandering Towards Wellness, Globally”

The Tingles In My Toes & That Burning In My Feet….

Oh wowzers- it was one of those nights! Yes the type of night, when tingles in my toes, feeling like the nerves in my feet were burning and then of course the leg twitches begin giving an extra amount of shooting pain. You see, this happens when my nervous system goes into major short circuit warfare. It’s occurance because I am one of many across the globe living with neuropathy. Neuropathy is nerve damage or some kind of internal disruption. That’s the simple definition BUT what’s not simple about neuropathy is the cure – THERE ISN’T ONE !

If you are a person who isn’t affected by this hideous condition then you will have absolutely no idea about what life is like, living an average day or night. So let me try and explain. Most people have little or any knowledge of how their nerves work and how vital they are to daily life anyway and so when the nervous system breakdowns they find it impossible to understand. I as a neuropathy sufferer have faced the difficult task of explaining my weird symptoms to doctors, friends and family for a long time. The description of my pain as spoken about at the beginning of this blog, has left me feeling frustrated and not taken seriously on many occasions. But what is happening is damage to the nerves itself and particularly the lining that protects the nerve. What is occurring to neuropathy sufferers like me, are a number of confusing, functional breakdowns which send out wrong signals, or no signals at all. It really can be compared to a short circuit in a domestic electrical system but the resulting feelings and sensations are pretty unique to the condition and every sufferer. It’s important to remember that neuropathy affects all sorts of people from all areas of society across the globe. Just as their are many people like me that suffer with neuropathy, there are also over 100 causes and over 100 types of neuropathy, so pinning down exactly how someone feels with their condition really depends on where the nerve damage is happening and what part of your body is being affected. 

So, where will neuropathy strike and how do you recognise it? That is the biggest problem for all neuropathy sufferers! Generally speaking though, it’s in the feet first. The best way to explain this to you, is as I had it explained to me. Feet are at the end of the nerve pathways and the furthest away from the central nervous system. So perhaps logical that problems happen there first. The nerves there are part of the peripheral nerve system. This is peripheral neuropathy and what my diagnosis is. The nervous system consists of the spinal cord leading to the brain which makes up the central nervous system – all the nerves radiating out from there are peripheral nerves. Back to the feet, where the signals of neuropathy usually begin! Let me tell you, that this pain is never an overnight happening,  it can take years to develop before you even notice anything which is why it is so difficult to diagnose and treat. My neuropathy has lead to my walking gait being strangely affected usually by losing my footing or miss stepping. I feel as though I am doing the right thing in order to make my feet move in the right direction but they do something completely out of order else which usually leads to falling. This collection of actions are because the wrong signals are being sent out, through a communication breakdown between my brain and my feet. Not only do the feet feel odd and painful but my legs can feel like they are becoming weaker. Climbing stairs and the simple action of walking can feel like an fitness boot camp , as I constantly now trip over or stumble when I least expect it. I now use a 4 wheeler walker as assistance with balance and security when I walk. Because of the nerve damage in my feet now when I walk , I will clench my feet in order to get a better grip on the ground beneath me. Obviously this leads to loss of relaxation and then muscular cramping of the feet occurs. So yes, balance becomes a major issue when chronically affected by neuropathy and i often feel like I’m walking around like I am drunk. Feelings and sensations like what I experience in my feet, also affects my hands and arms. When these instances occur, i can lose control of my grip usually causing me to drop things. This is where, you cannot even imagine the effect this has on me or others effected. What happens is a total loss of trust and confidence in our own actions leaving you frightened and confused as to what is happening and that isn’t taking into account neuropathy pain!

The pain neuropathy brings – OMG, where do I start! The most difficult thing for friends and family  to understand is the pain neuropathy can bring. It’s like nothing else you’ve ever experienced. My introduction was just the tip of the iceberg. It can range from mild tingling or burning, to pain that can leave you crying in agony, especially at night (the reason I was up, writing this). It can feel as though the affected areas are on fire and burning sensations are perhaps the commonest after tingling. Tingling sounds innocent enough but it can be so severe that it’s extremely painful and then you long for the numbness that I initially began with. I often feel like what feels like electric shock symptoms. It’s little wonder that opiates are my only course of action but even they have their limitations, leading to increased doses and other debilitating symptoms occurring and of course addiction to those medications. So with all of those weird feelings and sensations, I need to be especially careful with hot water as to me it can feel cold or vice versa leading to cases of burning myself. The same goes for my urinary problems and digestive malfunction. It’s very difficult to relate these to nerve damage but they are also common symptoms of neuropathy. The nerves to blood vessels, intestines and bladder are damaged by this condition and give out faulty signals leading to abnormal behaviour in functions which most take for granted. What happens is that i feel bloated after eating only very small portions or I will have difficulty emptying my full bladder yet the brain tells me that my bladder is empty. This has left me permanently disabled and now needing to self catheterise daily. This sort of thing leads to infections and instances of diarrhoea and constipation.

So do you see why trying to explain this, unless you have experienced it, is so very difficult! If you don’t live with neuropathy, you just don’t understand what it’s like. But hopefully I have given you a better insight of what it’s really like to have neuropathy in your life. It’s a horrible condition because it’s unpredictability. Some people go for years with only mild discomforts with only a little tingling here and a little numbness there – while others like myself suffer dreadfully and need to be at times on the heaviest of opiate medications to control the symptoms. All i ask is that if you know anyone that has neuropathy, PLEASE offer sympathy and understanding because their lives are difficult. Chronic pain is a feature of this condition but the chronic pain of neuropathy is possibly one of the meanest of them all and not to be underestimated.

If you have resonated with this, please let me know or perhaps connect with me on one of my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
Much love and kindness 

Lisa-Raie 💋
“Wandering Towards Wellness, Globally”

We Don’t Have A Opioid Epidemic – We Have A Chronic Pain & Illness Epidemic – HELP US don’t HURT US!

I’ve been rewriting this blog over and over again, and to be blunt there is no other way to write it,  but to get straight to the point – so here I go.

Living with intense and constant chronic pain and illnesses are challenging, to say the least but it’s a way of life every day for myself and millions of people all around the world. Being ill in this way is living with the unknown. Every day is different, and it’s really hard to plan when you have no idea how you will feel when you wake up or actually not knowing whether you will feel ok to live the life that you dream about and love and so it is so very hard not to feel anxious, depressed or even completely lost living with one huge question mark hanging over your life’s existence.There are a million and more constant questions and often no answers. 

So to be clear nobody really knows how to deal with chronic pain and illness, and that includes us as the people who have them, the loved ones that surround us and even the doctors trying to treat us. There is no guidebook for chronically lifelong illnesses and no way to answer all the questions that I have previously mentioned before, because every journey is so personal and there are so many illnesses categorised and labeled this way. So you see, when you have these types of illnesses your body is literally fighting against itself. The physical side of it is all throughout your body – you are living in daily pain, fatigue, with aches, food intolerances, medications along with hospital trips, surgeries, treatments, etc. It is, at times, too much to bear leaving us physically, mentally and emotionally devastated. 

So medication is being trialled all the time and this is where the journey of living with chronic pain and illness becomes scary as much of this medication is pain relief based consisting of opioid ingredients.

More and more there are scary headlines crossing all forms of media globally with such things as; “THE WORLD IS ADDICTED TO OPIOIDS” or perhaps  “THE OPIOID EPIDEMIC IS HERE”. The media is obsessed with the idea of the “opioid epidemic” taking over the world and affecting millions of people and ruining life as we know it. We regularly see on TV telling viewers about how pain killers are the worst things ever invented, and only people with cancer should be allowed to have them. So where does this leave the invisible chronically ill and in pain patients?? Because of these scare tactics, even some doctors can be found ducking and weaving, telling their patients that they now have to get over their pain alone. Some doctors are still sympathetic, but they are also being harassed by their own medical boards so they really have no choice to lessen use of prescription pain killers. This is all because the media says there is an opioid epidemic. The world talks about a supposed epidemic however there are millions of  people living with chronic pain and illness globally.

In my opinion, yes there are too many painkillers being prescribed but has anyone stopped to ask why this is? I believe its because millions of people are in constant and chronic pain with more modern day illnesses caused by the stress and pressure on life in general and also that the medical alternatives which are great treatments to pain killers like for example, massage,physical therapy, chiropractic care, acupuncture and the list goes on, are way to expensive and pricey and financially out of reach for the average pain ridden patient.

Understand this that, we the patients so riddled with chronic pain and illness daily are very likely unable to work. If we cannot work, finances are lessened and alternative treatments out of reach at present.  If the natural alternatives to pain killers were able to be bulk billed or at least have their payments part covered by the Government in some way, then people ill and in pain could have some other avenues to treatment besides painkiller medication or perhaps building a balance between their painkillers and the alternatives. Yes, there are overdose deaths related to pain killers, but there are also deaths related to chronic pain and illness and these may appear to be linked together. There isn’t always a way to tell whether someone died of an accidental overdose or if someone committed suicide by overdose because they were too overwhelmed by their illness and pain. I believe, there is a notion that we are more concerned about the overdose deaths caused from painkillers than the millions of people who are living in chronic pain and illness that maybe at risk of suicide. It seems that we are far more concerned for people after they are dead than when they are alive. If people are alive and in chronic pain and illness, it appears it’s not the medico’s problems until they die and then it looks bad.

Globally there is a chronic pain and illness problem, not an opioid problem. So let’s talk about how to deal with chronic pain and illness instead of just taking away medication that makes us look bad. 

So let me get to the actual addiction problem, and how we are handling it? We’re handling it by taking away pain killers from those that need them without considering that people might then turn to harder and illegal drugs to ease their pain or their addiction. Taking away pain pills from patients isn’t going to help anyone. The honest pain patients will live in agony and lose their quality of life, and the addicts will turn to the back street accessible harder ones. Let’s treat the actual problem because It’s not the people in chronic daily pain and long term health complexities who are the problem here. 

I don’t pretend that my little blog post can fully summarise the global problem of chronic pain, illness and the supposed “opioid epidemic” however it does draw out a simple understanding and this is why I am left feeling that only chronic pain patients like myself seem to understand the real scope of this problem and this is the reason for my blog topic. You see, I had to complete a survey for an upcoming pain management consult. The survey did nothing to really assist in building better and alternative bridges to overcome my chronic health and pain levels, instead just labelled me as a patient with a opioid addiction. Yes, I take numerous prescription and pharmacy bought painkiller medication but it’s because I have no other alternative. I have tried to live painkiller free, only to end in hospital frequently, being given hospital strength painkillers which contain opioids on a higher level.

The fact is that if there was more research, awareness and assistance for chronic pain and health patients we would not be alone in our fight for pain and illness management. I ask the politicians to stand up and help us the people in pain, I ask the doctors to please support and assist the rights of us as patients and I ask the media in all categories to please help and not scare the world in regards to this extremely important topic for the millions living with chronic pain and illness because at the moment we are a world that should be ashamed.

I hope that you are still reading my post at this point and hope that you may help me get my message out to the greater world by sharing this blog with your friends and family because it’s so much better to walk together than to tear each other down.

💋

Introducing Myself…

Hello & Welcome to my blog,

I’m just a goddess wandering the globes shores barefoot looking for life free from health complexities which include, invisible illness, chronic pain, anxiety & depression.
You will find me at my happiest, sitting by the ocean with my journal, pen, yarn, crochet hook, vegan food and meditation cushion.
💋