That’s The Thing About Pain….It Demands To Be Felt πŸ™πŸ»


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, β€œthe 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 πŸ’‹
“Wandering Towards Wellness, Globally”

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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 πŸ’‹
“Wandering Towards Wellness, Globally”

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.

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

πŸ’‹

Living With Chronic & Invisible Illness Is A Bitch………

Living with chronic & invisible illnessses are a bitch BUT you’ve gotta keep going, you’ve gotta keep striving! Why , because we that live with these illnesses are more, so much more than the pain and suffering. So everyday let us all get up , show up & never give up, raising awareness for our illnessses & diseases bringing hope that the future will bring better treatments & possibly cures. 

 πŸ’‹

Life’s little bus ride feeling every bump!

           #WeAreAllInThisTogether

You know those days – It’s called life!

Life is a journey-on a bus that hits some fucking big bumps and we all ride it . It hurts at times and it’s those biggest bumps that bring on suffering. In those moments of suffering, we can feel like an outcast, as if on the wrong bus – like there is another bus driving along a different road. This other bus, is filled with a tribe of passengers who are all healthy, happy, well dressed and well liked. They are positive people who shout out with harmonious energy,they never let anything bore or aggravate them and they certainly never jump on and ride the bumpy route of the journey of life. But alas, we all long to be on that bus – that’s the bus which is our vision, our passion, our dreams – what we sit on is, the bus of ‘impairment’ because we become stuck. This is the illusion that so many of us struggle with and is what sits us all alone in our weirdness, uncertainty and full of anxious fear, feeling like that lost person on the highway of life. Of course we don’t always feel like this. Sometimes is just a hiccup that washes over us BUT sometimes it feels like a full tidal wave-we sit, we slide, we fall and then suddenly we’re back connected to our tribe – suddenly we belong again!

These are the thoughts and feelings that happen to ME and I know they happen to YOU. It’s part of living lives online and in the modern world where we are connected more than ever, able to share it all, yet we are so very alone!

If you are feeling like you are standing at the wrong bus stop, or on that wrong bus – Stop, Remember who you really are & What your true purpose and message is – then take a moment to breathe and reflect before beginning to walk or ride that bus of life again!

If this resonates at any stage please let me know, either by liking , sharing or commenting.

Much love πŸ’‹