Seven Daily Habits

7 daily habits, that will change your life;
1 – wake up 
2 – complain less
3 – teach others
4 – roll with change
5 – be on time
6 – practice kindness
7 – stay positive

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;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

Much love to you all
TBG 💋

Chronic Pain & Illness Deserve Respect and Research Too…….

CHRONIC PAIN & ILLNESS DESERVE THE SAME AMOUNT OF RESPECT and RESEARCH AS CANCERS……please read & share doing so you support your friends wandering a lonely path towards finding wellness……..

I WANT THESE WORDS, SHARED ACROSS OUR GLOBE, SO THAT CONVERSATIONS CAN BE BEGUN TO HELP AND SUPPORT CHRONIC PAIN & ILLNESS PATIENTS . It starts with one and if just one other person then shares this, then another, then another-before long we will have a global conversation and greater awareness of the importance for better healthcare for chronic and invisible illness.
THIS IS MY FIRST AWARENESS CHALLENGE-PLEASE HELP ME SHARE MY MESSAGE GLOBALLY……and this is why;

More work needs to be done for chronic pain and illness. The numbers of people globally feeling that they have no way out of their chronic pain and illness is growing at scary rates. 
Our Governments need to wake up and give this the same attention it gives to cancer. One day of the year, for “RUOK” day, that spotlights mental illness and depression doesn’t cut it and the effects that these invisible illnesses have on the individuals, families and friends is devastating.

I can say this, because I breathe, walk and talk the journey everyday. It’s my mission to open up more discussion and conversation for myself and many others. WHY, because we all deserve a life that we love. 

I WANT THESE WORDS, SHARED ACROSS OUR GLOBE, SO THAT CONVERSATIONS CAN BE BEGUN TO HELP AND SUPPORT CHRONIC PAIN & ILLNESS PATIENTS .
Let’s send this viral and start walking, talking and wandering towards a life of wellness.

Breathing Through Chronic Illness With Meditation 🙏🏻

If you are like me, I don’t have to tell you that living with chronic illness can be at times unbearable. I know I do everything I can to get through days and nights – I try moving but that hurts, I rest but that hurts, so I do nothing but that hurts more! So by the end of each day, I’ve taken the maximum dose of painkillers that I could but the ache is overwhelming and consuming every breath. It’s a vicious circle that rotates endlessly.
But, as I’m having to deal with the chronic pain and endless number of physical symptoms that hurt – it’s also my mind that is also hurting . Questions, questions, many questions consistently overload my brain with such things of being unable to deal and cope with the ongoing pain and illness and all I’m asking is that I just want it to stop – I JUST WANT IT TO ALL GO AWAY – but it doesn’t!
This has been my constant thoughts and feelings over many years but I find of recent weeks it’s back with a vengeance! Pain insomnia wreaks havoc on living, so the only thing that I can do is to fight back against these moments of excessive chronic pain and illness so that I don’t fall back into a spiralling doom of despair.
Last night, I switched off from social media and connected back into a mindful space with meditation. A number of years ago, I found yoga and meditation and I found that it reduced my chronic pain and illness immensely and I was able to learn the principles and I began actually teaching it. However, as I stepped up the energy levels, my chronic illnesses stopped me in my tracks again. I could no longer do or teach yoga because of paralysis and weakness and so meditation fell by the wayside too. Being in a zone with insomnia for over a fortnight, has lead me to think about ways of not falling backwards-the breath of mindfulness has come back. I know very well that this mindful action soothes my mental and physical angst. I have no idea if I can bring myself back to being able to no longer feel pain with the intensity that I am, but if I bring back my focus to the breath just possibly I can help untangle the thick fog that insomnia lands me in.

So back to meditation i go. What meditation does is focus on different parts of my body simply using my breath.  It allows me to see my mind and body in action and to feel the pain sensations as they rise within my body and then let go of them using calming deep breaths. I did not think I would have success straight away, but I was amazed by the difference. Last night, has been my best night for about a fortnight. You see, just by bringing my calming breath back into play my chronic pain insomnia and intolerable nerve pain and twitches began to melt and I was able to rest and was able to sleep – YES SLEEP.

I know my pain arises from my multiple chronic illnesses and the damage to my bodies nervous system and what is like a speaker in my brain leading the intensity of mind and body suffering. From studying different forms of mindfulness and from my personal health experiences, I’ve learnt that my mind does not simply feel pain, it also processes all the information that it holds. Its like my mind, zooms in on my pain looking for away to take it away but instead what my mind is doing is causing my pain and or hurting to be louder. Before long I’m in periods of excessive pain and illness and insomnia is causing me more hurting. I know, if I don’t do something I will end up being consumed again by my excessive anxieties, stresses and worries as well as my physical pain.  As I spoke earlier about in an instant the vicious circle of downward spiralling is with me again, which hurts and  impairs my healing process and leads to even more hurting.

So it is time to again, step into handling my pain and hurting differently to how I currently am. I need to lay my hands open to the powerful effect of mindfulness so that I can better control my pain. I know personally when focused, that mindfulness does turn my volume control down on pain. It also lessens my anxiety, stress and the depression that it has brought me. Using mindfulness, my mind and body can again truly relax and perhaps in conjunction with my medication and other problems which include my memory loss may improve as well as my mental and physical energy. As I’m writing this I’m wondering – WHY THE HELL, DID I GIVE UP MY MEDITATION!

So come forward – I’ve found a wonderful app called “InsightTimer” – you may want to have a look at http://www.insighttimer.com . This app, has over 2000 different meditations- I regularly search the different rest, relaxation and sleep meditations and I’ve again found that stepping into following the guided sessions I can use mindful activity as a powerful painkiller in conjunction with my other medications to assist my steps walking forward.
If you would like to give meditation a go, I would suggest looking for the app I spoke of but also practising getting your mind and body to relax. This is an activity I use and its best practiced in a quiet area. Don’t worry if your mind wanders. Mine does, so don’t get mad with yourself. When it happens, just bring the awareness back to your breath and concentrate on the part of the body  where your mind wandered. As you focus on each part of the body, listen to how your body is feeling.

So let’s begin the practise;

I will generally Lie on the floor, my bed or my sofa, letting my legs lay relaxed and slightly apart. I place my hands on my tummy (presently I have a paralysed right arm so I place that hand under my left, so it stays in place. I will close my eyes and sink myself into the floor. Next I focus on my breath – listening and feeling as it flows in and out of my body. I will just lay still noticing how my breath is, feeling the rhythm of each breath in and out with as much detail as i can – doing this allows me to really connect inward. I will start at my toes and work up – spending a few minutes with each area of my body feeling how it feels in temperature and with pain. As you breathe in, hold your breath and then slowly exhale in each breath, I use the count of 4 and then again to the count of 4, I exhale. I will often spend more time on particular areas of my body that are feeling worse pain. Once I’ve listened I will move my awareness to the next area of my body. I will stop and observe what i find for a minute. So basically it’s about breathing deeply in, holding your breath and then exhaling observing from your toes up all the way to the top of my head. Once I’ve reached my head I will spend a couple of minutes observing my whole body breathing as one. Slowly I will open my eyes and bring myself back to my surroundings. What I find, is that there is a calmness across my body, I may still have pain but my body is in a state of awareness that allows me to either continue with my day or settle into a restful space for night.

I hope that this post has been of help for you, if you’ve been thinking of trying to incorporate mindfulness and meditation into your life and chronic illness journey. If it resonates with you or perhaps you want to know more about my journey, please don’t hesitate to connect with me here or across on my social media channels.

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Much love

LR – The Barefoot Goddess 💋

 

Living With Chronic Illness – Part 1 – Functional Neurological Disorder.

Living with debilitating chronic and invisible illnesses are so very hard. This is why I share my story, so that greater awareness can be brought to the world. Today I share what will be a series of blogs about the different illnesses that I live with. 

The  illness I am beginning with is (FND) Functional Neurological Disorder and below is what it involves and the many symptoms that I suffer with – at times all at the same time, and other times seperately. (FND) or Functional Neurological Disorder occurs as a result of a problem with my central nervous system and my brain failing to send or receive messages correctly. 

The list of symptoms is very long and many of them can be very disabling. Living with FND, sees me experience a number of symptoms at the same time or  perhaps just living with one or two symptoms at a time as I spoke about earlier. Just as with my other chronic illness and autoimmunity, I can find frequency and severity in my symptoms. Also a lot of these symptoms are also found in the diagnosis of MS & Parkinson’s Disease making it high level debilitating, life changing and hard to diagnose.

Below I list the particular groups of symptoms that are commonly found in FND and to which I live with;

Motor & Movement Symptoms;

  • Shaking, mostly found in my arms or legs 
  • Uncontrollable and perhaps painful muscle spasms usually in my hands or feet. 
  • Uncontrollable movements such as jerks and twitches.
  • Problems with walking such as dragging my leg and uneven steps causing many falls.
  •  Limb weakness within my arms or legs where it doesn’t feel normal or I can’t hold any weight through them.
  • Paralysis with an inability to move any part of the body, usually on one side only but not always, which lasts a period of hours, days or longer. At present I have paralysis in the right side of my body which has been with me for many months.
  • Swallowing difficulties where I  can lose the ability to swallow or a it may feel like i have a lump in my throat.
  • Difficulties with my speech when my words may become slurred, stuttered or even maybe lost temporarily altogether.
  • Bladder and bowel problems which may include loss of sensation leading to incontinence and some kind of catheterisation.

Sensory symptoms;

  • Dizziness is the feeling of being lightheaded and not in balance and sometimes feels like my surroundings are spinning.
  • Being sensitive to light, sound, smell, touch or taste is a ongoing familiar symptom.
  • Nerve pain often feels like my skin is crawling with bugs and sometimes gives me electric shock sensations.

Brain Symptoms;

  • Memory difficulties and/or loss.
  • Poor concentration.
  • Word finding difficulty.

Other areas that can be associated with FND can be;

  • Chronicpain
  • Migraine
  • Fibromyalgia
  • Stress
  • Anxiety
  • Depression
  • Seizures

This is life as I know it and at present there is little known about FND, so my medications and treatment plans are very much being trialled. It is very much invidualised to my particular journey. It is my mission to raise awareness and funds so that more research can be done to help myself and so many others find a way to live free of functional neurological disorder.

I would love to connect with you, if you or someone you know, also lives with FND. Please connect with me here or perhaps on one of my social media accounts.

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Much love

LR The barefoot goddess

💋