Nobody Sees…..

Nobody sees me, nobody at all.

Nobody sees me at 3am when I should be asleep but the pain from the tip of my head to my toes is filled with pain.
Nobody sees me, nobody at all.

Nobody sees me,

trip and stumble

Nobody sees me,

put the TV remote control in the freezer

Nobody sees me,

put the house keys in peculiar places

again
and again.

Nobody sees 
when your so tired, that you can’t even take your bra off each night,

Nobody sees

when you are still in the same clothes, 3 – 5 days in a row….

It is such a glamorous life

being chronically & invisibly ill!
Nobody sees you

trying to stay calm…..CALM what the fuck is that,

when you are chronically and invisibly ill!

Nobody sees you
when you fix lunches or dinner

because you said, you were OK

AGAIN and again 

and again, EVERYDAY!

Nobody sees you

sitting over the sick bucket in the middle of the night

Nobody sees

your inner self  kicking, swearing and shouting,

trying desperately to hold it together
NO, nobody sees you

holding on, like you are a trapeze artist on a tightrope of chaos.

Nobody sees you 

getting up
and sitting down

then getting back up 

then falling to the floor

Nobody ever sees you when the days are so dark and gloomy!
No, nobody ever sees that you just didn’t leave the house for one whole week.
NO – Nobody FUCKING saw that !

Oh what a glamorous life,

to be chronically and invisibly ill!

Nobody sees

when you were so empty

but you still gave something

or  made something

and continually saying sorry for being cross, again and again!

NO nobody sees that real YOU!

Nobody sees all of the things that you do, or the ways that you manage, when REALLY you can’t manage at all!!!

and then there are those questions,

“you don’t look sick”

‘when are you going to go back to work?’

I can tell you, 

living with chronically and invisible illnesses 

are jobs in themselves 

and they are seriously one of the hardest jobs anyone can ever have to face

because you are simply reduced to sitting around at home
and nobody sees you , nobody sees that
But through all the torture 

there is something you are building 

sonething that  will never be torn down

– THAT SOMETHING IS INNER STRENGTH 

So remember 
When nobody saw how much you gave

every day

every night

every morning 

every afternoon 

and every moment.

Well let me tell you , I saw you and I felt you, 
 I think you are so wonderful , so BRAVE 

STAY STRONG because just because there are BAD days, it doesn’t mean it’s going to be a BAD life!

If you are chronically and invisibly ill and you resonate with this please like and share and if you haven’t connected please do so on my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
“Wandering Towards Wellness, Globally”

Chronic & Mental Illness Doesn’t Change Me From Whom I Was….So Please Don’t Stigmatise ME!!!

So as I lay here this warm summer evening in  Australia and I am thinking about the multiple chronic illnesses that I have. But there is one that stands out for all the wrong reasons! That health condition is Functional Neurological Disorder. It was a condition, that was not offered to me, but as many others it was given. The road wandered is hard! Some days it can feel like I am not really that sick, but then there are the najority of days that leave me wondering, why I have to be one of the small percentage of people around the globe that have to endure the most horrible pain and suffering that anyone has to deal with. 

Unfortunately, this is the hand I’ve been dealt , so let me get to , walking on and strong. It’s how I choose to use this hand throughout my life. This health condition which is Functional Neurological Disorder, will keep you down in such darkness or uplift you to such sunny skies. I can tell you that FND, can keep you tied down or it can you lift you up!  I have used so many different treatment plans and therapies. BUT , now I’ve found a path . It’s allowed me to walk past and through the ‘denial phase’ , where I just didn’t want to know. I am now in the ‘acceptance phase’ where I understand the difficulties that I face and that I will face.  

BUT , now all I want is to be the light, so that I can shine for others, through their phases  – initial and long term !  As we get ready to welcome the new year in, I will be launching two books, one about my own illness and life journeys and one filled with stories from my brothers & sistas  and their journeys. I have also created a storyline for my awareness documentary , a Ebook stepping the baby steps using yummy healthy vegan food..

If this resonates with you again , please connect and join my little tribe, because when we walk together, we simply the sun and our lives.

So if you broken, please know you are not alone and you definitely don’t need to stay broken, I am here and we are here together and we will become strong again.

Much love 

Lisa-Raie

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
“Wandering Towards Wellness Globally”

Suicide – Let’s Talk About It….(please)

Who the fuck am I? DO YOU EVER ASK YOURSELF THAT or am I just the crazy bitch that the doubters, naysayers and haters say I am!!!

Am I the goddess of truth, light & healing or am I the goddess of dark, illness & death……

I truly am wondering this at the moment. 
You see, I have a FUCKING big message to bring to the attention of the world and that seems to be the problem! 
My message is “SUICIDE” but as soon as even the word is mentioned, people turn on me and then they immediately switch off! It is still the one huge subject within the mental illness bubble of life. Suicide numbers are rising, globally. 
We have to talk about suicide, because to talk about it is about living and that to me, is what life is about! 

“SUICIDE IS THE ELEPHANT IN THE ROOM”
So to you that are still reading, suicide was brought into focus for me whilst I was living in Geelong. We were involved in two seperate sports clubs, cricket & football. We got really involved socially with all the fantastic people and within both instances hearing the news that 2 young men still with so much to live for , had taken their own lives was horrible to understand in every degree. The shock was devastating for their many friends, so to even understand what the families were going through- well you couldn’t. The only thought was that if only we knew the battle they were fighting. In the months afterwards I think there were many of us that knew these young men, going through a whole range of emotions, trying to make sense of the super situations;

• Guilt was definitely one – could I have changed the outcome had I been around?
• Anger- that they had selfishly taken the easy way out but, mostly, just an indelible sadness that we could never talk to them again.

But life goes on, however something is altered forever. I remember our family dealt with it particularly with regard to one of the boys because we were so close to him and like I’m sure many do, we didn’t talk about it properly and it was most definitely the elephant in the room.
SOME PEOPLE THINK SUICIDE IS SELFISH-THIS IS FAR FROM THE CASE!
In the years that followed my own health deteriorated and one after another, I was diagnosed with a multiple number of chronic illnesses. You, can never understand what the journey looks like, initially because you are so ill but the doctors can’t find what’s wrong with you- then they do and it’s a relief but then the journey keeps continuing to bring more pain. That physical pain really seriously puts pressure on your ability to cope and then suddenly without even knowing you are battling physical and mental health conditions. Throughout my own wandering with chronic health I’ve tried to stay strong by finding other mindfulness, treatments, people – anything that would allow me to keep the breath of life alive. In 2015 after a period of really good health, my health deteriorated seriously quickly. From about April of that year to September I was struggling to build the growing wellness centre that was my life force. My business ended and so did the energy to live, I was googling suicide and ways to die but I never did! 2016, arrived and a number of family circumstances caused me to spiral out of control, ended in hospital with pneumonia in March and then not long after I was back into hospital with chronic pain and illness. It was that admission and after a visit from one of my specialists that I knew I couldn’t keep going. I had to escape, I ventured out of the ward to take myself to the road so that I could kill myself. Obviously- I didn’t get their, but with the help of a most wonderful doctor I realised that my physical health complexities had caused my mental health to be critical and it was not normal to have suicidal thoughts. I spent three weeks in hospital organising medications and therapies to help my physical and mental health conditions. 
Suicide can be difficult to understand for anyone who hasn’t been suicidal. I thought about my mindset at the time of the young men of Geelong and their suicide, and I probably did consider it a selfish act. That is far from the case now. Some people also think suicide is a choice, again this is wrong. I actually think suicide is often due what people perceive as a lack of choice. I now know that the person who takes their own life OR EVEN TRIES IT, believes it is the only way to stop the pain.
I’ve promised myself, if I ever get to that place again, I will open up AND I guess it’s why I WANT THE DISCUSSION TO OPEN UP within the world more every day.
I want to try and explain what takes a person to the point where they cannot conceive of living any more. Despite having seen at first hand the devastation that suicide of a loved one, brings I was at the point where I genuinely believed that everyone who knew me would be better off if I wasn’t here anymore. When you are in such a dark place, all insight and rational thoughts are lost. It’s not necessarily that you want to die, you just don’t want to carry on living. There is just an never ending darkness in your mind, which you think will never end. You become very good at hiding it, putting on a mask.
Do what happens when you start to get treatment and clarity begins to return. Well seriously talking about my experience, I couldn’t quite believe I nearly came so close to putting my most loved ones through such a horrendous ordeal. Hopefully I won’t in the future. 
I’m in the best place I can be at the moment, even though I do stop at times like these moments because of my chronic physical illnesses. I am busy equipping myself with the tools to keep on top of my mental health, so that the physical health doesn’t tip me over. But I also know that if I ever do get to that place again, I need to open up to those around me before it’s too late and another reason why it’s my mission and message to get my loved ones and the wider community and world learning to talk about the subject.

There should be NO STIGMA in talking about SUICIDE.
I know that people are afraid of suicide because they don’t understand it, which is why it’s my role to help the world demystify it, and make it so that people are not uncomfortable expressing suicidal thoughts. 
SUICIDAL thoughts doesn’t make you selfish or weak, it’s just a symptom of an illness, and like other symptoms of other illnesses there should be no stigma or shame in talking about it, indeed, it should be encouraged.

My name is Lisa-Raie, I am the barefoot goddess of light and dark who wants to talk suicide with you. 

If you or anyone you know is feeling suicidal please find some phone numbers available for you within Australia, USA and the U.K;

Australia 

BeyondBlue

 Ph. 1300 22 4636

Lifeline 

Ph. 13 11 14

USA

1-800-SUICIDE
(1-800-784-2433)

or

1-800-273-TALK

(1-800-273-8255)

UK

Calm: 0800 585858, 

HopeLine UK – 0800 068 4141 
I want this message, my message spoken about and I would be so grateful if you, yes you would be kind enough to share it with your community. By sharing we begin to talk about it and that’s what is so important.

Please connect with me on my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

“Wandering Towards Wellness Globally”

Living On The Edge With Chronic Illness – A Step Into The Darkness Means Asking For Help…….

So today, my thoughts are going back to when everything was oh so dark and in despair and I felt like I could not keep going.  WHY – Because I want you reading this to know that you are not alone in your journey with chronic pain and debilitating invisible illnesses.

​​
You see, when you are chronically ill, apart from the everyday pain and illness you most probably will suffer from forms of depression, loss, loneliness and perhaps even  thoughts of suicide,  but you will rarely discuss these because you think you will be judged as weak. I want to speak to you, openly about the fact that these topics are ones that you don’t want to dismiss or ignore and I am speaking from personal experience. 
By speaking of my own journey, honestly and vulnerably , I hope that I may help you feel more comfortable about talking about your struggles with living with chronic illness everyday. I want to show you that by choosing to ignore these dark moments, only can make the problems that you are dealing with even bigger, scarier AND lonelier. Being honest opens up doors to your inner most private struggles and lets other people in to help.  

So let me explain a little bit of my experience. Obviously my physical health was caused by multiple chronic illnesses of autoimmune & neurological breakdowns but I also started to notice a  mental deterioration clearly by middle of 2015. I put it down to extra tiredness due to opening up my own business as a life coach and yoga teacher with my own studio. I know that my chronic illnesses are part of me and this business was my way of opening the journey up to the greater world. I wanted this so much, so I just told myself to keep pushing through the daily processes of life. 

Let me stop right here, now and explain that my living in silence with my pain and illness is an oh so clear example of how this modern world makes surviving chronic illness and is without a doubt, one of the hardest hurdles to overcome. 

Going back to the beginning……my health began to decline and initially , I approached it as though I had a bad flu. But that flu, never went away so off to the doctors, I wen to find the problem, so again I could be well. Right – oh no, not so! As months went on and one year turned into multiple years my pain and suffering weren’t getting better , in fact, they were worsening. I tried all the mainstream medical philosophies, I stepped into alternative therapies , which may I say allowed me to find a path through for a while but as life was seemingly moving, my thought process began to divert from those who surrounded me. I kept going to the doctor, many doctors actually and many times, over and over but that is where my original plan failed. The pain was from nerve damage, but that was where the understanding of my situation stopped. My body kept adding more and more  symptoms and the doctors seemed to have less understanding and compassion of my daily life . Particular autoimmune illnesses were diagnosed but confusion regarding what was impacting my health increased as did my pain and with each failed attempt at managing the pain or finding a diagnosis, my life  was falling through and into deeper levels of darkness .

I can tell you that as this journey of mine wandered further, I felt a thick disconnect from everything. Everyday became a blur and what was once important no longer seemed real.  I knew I was a part of the living world and I knew I had this passion and purpose but  from 2015 it felt more like I was watching it from a million years away than from reality. This life – my life it seemed so, so far away. I began to wonder if I would ever live that life that was so vividly clear in my visions and dreams. I had once planned to make world wide impact but my days consisted of lying in bed using  my electric blanket and medication or anything and everything I could think of to lessen the pain.  There would be days where I would sit up but I would still be taking high doses of pain medication and my trusty heated throw rug or sitting outside in 40 degree days just to feel well. That is NOT life. The thoughts of being well and free of these debilitating chronic illnesses were not even near being real and in that state, I just wanted  to decrease my breath into a life of living – YES, I wanted to die! I wanted relief, I wanted wellness , even just a minute. That obviously wasn’t to be, so thoughts of dying came more readily like we breathe our most magical visions and dreams had for so long. The only thing was  I thought was to go to sleep permanently- you see being in chronic pain and illness makes you so tired , so you sleep but then you wake up.  Even the short bursts of  sleep I was getting, only gave me short term relief, but my body’s pain  and suffering continued. So fast track to late 2015, early 2016 and I was done with this pain and these illnesses- some known about , others even doctors were left flabbergasted! SUICIDE was going to be my release from this world that became all too hard. I was angry, I was hurting and no one could help me.  I was in a very dark place that I could not get out of ! So I entered hospital early 2016 with pneumonia, which I believe spiralled me further into despair. I soon was discharged, with the doctors giving me the same scripted announcement- “you will need to rest , so that you can best recover because of all your other health complexities”. I was stuck in self destruct mode with such thoughts as “they’ll be sorry,” or “I’ll show them.” My pain and illness were my permanent and realistic nightmare everyday.  My  physical and mental health could not survive another spectrum of life with this level of suffering, death would be a relief, it would be an end to this awful pain and it would take me as the burden away from those closest to me. The only problem was my loved ones, as much as I wanted to leave the reality of death I didn’t want to leave them. I tried  making my husband and children realise that by killing myself it would be kindness .  I so much wanted them to understand this agony, that I was living, so that I could find relief. At this point, I was  only alive because of the people I loved, but then they left me the internal distress was at breaking point.

Come to March 2016, I was taking massive amounts of strong pain medication but just couldn’t get relief, so I went back to  hospital.  I was in a bad state, confused , in pain, in anguish , constantly falling over and even, hospital where I thought that these people would understand me  and help me were not!  I resented myself, everybody and everything – Noone really had any clue how much pain I was suffering . In that instance , I did something – I tried to kill myself. I tried to escape the hospital ward and take myself to the busy road outside and be hit by a truck. Obviously, it failed – I fell outside of the lift – but it brought me to the NOW to finding help that was there, being open to accept it. 

Being alive and living are two different things which I had forgotten after falling victim to my own health complexities, I got lost in the mist of extreme darkness and depression because, I was afraid to accept help. I thought if I accepted help, that I would be showing an even greater sign of weakness. How incorrect the thoughts (my thoughts) are when mental health disintegrates. Accepting help and building a team of health and personal support is the biggest mental and physical gain that I have given to myself. I now, know that all life needs when in these most anxious moments of life, is honest conversations regarding an understanding and  compassion. I am grateful, for my new doctor whilst in hospital as it was, he who made me realise that coming to hospital and accepting admission was the best and only option for me. It was probably my most loneliest hospital stay but also the most important 3 weeks of my life. It gave me new set of medications, treatments and a resilience to get me through the days living with chronic illness because we walk inseparable through life.

To conclude my experience, I have learnt that at this time in the modern day world, depression and suicide are as much a part of chronic illness as all the other invisible symptoms. The problem is that this world, ignores or perhaps more correctly chooses to avoid the subject. This then leaves the chronically ill like myselff, alone to cope with  the demons and darkness that nobody should have too live with. I believe if, i  had of found that new doctor months and possibly years earlier, who sat with me  and had the full non judgemental conversation,  my journey may not have  been so heavy and dark leaving me to progress like I am now. 

As I am writing this , this conversation still terrifies me but I also know talking about it helps ideas and perspectives make more space within the brain for new opportunities that life may not yet have offered. Always  remember to show kindness, compassion and understanding;to yourself  because our inner most  thoughts aren’t because of us, it’s because of the external journeys that we are living. I am now reteaching myself using mindfulness, journaling and talking about how to no longer hold on to my fear, my pain or my illnesses. For the remainder of my journey of life with chronic illness or not I want to feel alive . So by me being able to write and talk my experiences, I hope that this may help some of you and together we can begin to walk together and tear down the stigma of being vulnerable and out of reach of a life to be wandered towards wellness and wonderful experiences.

​​

Lisa-Raie

(AKA – The Barefoot Goddess) 💋

If this resonates anyway please let me know either here or on my other social media channels;

http://www.facebook.com/IAmFNDaware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Snapchat 👻- simply_lisaraie

My Husband, My Best Friend, My Lover & Most Importantly My Carer…

My husband is my best friend, lover and most importantly my carer, without his help I would not get through the day. There are some days which are better than others, where I don’t need his help as much. The deterioration of my chronically invisible illnesses have placed so many more limitations on me. It has been such a hard thing to accept not to be able to be independently doing things for myself and family. Over the 10+ years that I have had complex health problems my husband has been there through it all, but this year spiralling out of control into the dark depths of despair has been when when my husband has stepped in and started picking up the slack when I couldn’t. You see when health disappears and full time catheterisation needs to be performed daily, when balance disappears and falls occur at the drop of a hat and then when limbs become paralysed and so many other changes occur it makes us accept that our world has changed. The changes to life has been forever changing just as my chronic health will be.
An average day for my husband looks like this, (of course from my point of view.) Around 5.30am my husband arrived home from working 8 hours of night shift, he will sleep for 1-4 hours and then generally will go out with our youngest son doing garden maintenance . He will then come home and help with household chores and the like. He may get a couple more hours of rest/sleep before having to go to another 8 hour night shift He many travels kms everyday, some days are longer than others.He does all of this while also taking care of me. Reminding me to take my medication, letting me rest when all is to much, he is always checking I have eaten or had a drink and he keeps track of my medical appointments and he is there providing me with the emotional support when the days are just too hard. There have been times where my husband has had to take time off work to care for me and our youngest child to which I am so very and forever grateful.

Since my health has deteriorated we have had to research and apply for some Carer assistance as it becomes very difficult to survive when income decreases and it amazed me just how many carers go unsupported and unpaid, like my husband they do it because they care and want to make the life easier for those they love. I believe in Australia there are about 2.5 million unpaid carers. On average carers spend about 40 hours a week providing care for their loved ones. For me the carers are the inspirational ones, for without their dedication and support for people like myself, I doubt I would be able to continue to live life. They are the unsung heroes, the ones who get up everyday and face the challenge of caring for someone with chronic illness and/or disability. I thank my husband everyday for doing all that he does not just for me, but for our older children that have now moved out and for my youngest son still at home. 

My life is so much brighter because I have my wonderful man by my side, there to catch me whenever I fall (quite literally). Why am I writing this today, well it’s my husbands birthday and while we can’t celebrate wildly anymore I can still raise a toast for all that he does by shouting out massive buckets of gratitude. Happy Birthday my love, for everything you do, you make me strive to step forward and live that life that I love.

💋

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.

💋

The Lonely Walk With Chronic Illness ❤️

When you live with chronic illness you may experience an immense heartache because of  the loved ones who walk away. This is so for me, and I know so for many other people struggling to live with chronic pain and illness. It’s unfortunately inevitable that when you are chronically ill, they will affect relationships you have with friends and family, etc – it doesn’t really matter who it is because our chronic illnesses don’t care.

This is the sad reality, of chronic illness and it shows the true colors of the people that surround you at sometimes the most vulnerable. You become aware of just who actually cares enough to stick by your side when you and your health follow the long and winding roads of chronic illness. I can tell you, from personal experience It disappoints, shocks, sadden and even crushes me how some people will be during your most low times. Not all loved ones show support in the same ways, and again in my experience some do a five star job, but their are others that will wipe you completely. It’s just not very nice to see those loved ones walking away because we do not choose our illnesses and we definitely can’t change them. Appearances  and even attitudes can be changed but we can’t change our illnesses and when a loved one may walk away many of us that live with chronic illness struggle with deep and dark anxiety and depression that accompanies  our already harsh illnesses.
I often try to decipher what has wiped away some of my loved ones and  I know it is very hard for them to even fathom my life, my pain, my struggles. This journey has taught me that different people handle chronic illness very differently. Some are caring and supportive, some wipe you from their life, many talk behind your back, others are just left confused and then their are some that just tire of hearing about the journey. I know I get tired of wandering this journey that changes directions so many times and I am certain this is why people like me, try to tough out life with chronic illness, acting as normal as possible, saying we are ok, when really we feel simply horrible. 

Walking a life within and through chronic illness judged or doubted by loved ones is devastating. My pain is real. My illnesses are real and the reason why I wander globally telling my story is for awareness and to be a voice not only for myself but also for the many others also struggling to make sense if their journeys. 

Life is hard enough and I hope one day, cures can be found for our illnesses that consume us and when this happens, I can only hope too that  those loved ones who  judged and or walked away from us may see that we were the goddesses and warriors fighting such horrible battles and perhaps reunions may occur.

I hope if you have resonated or connected with similar journeys that time eases pain but know you are not alone. If you need somebody to see this please share.

 It’s these journeys that we need to remember clearly that it’s so important to walk together, not tear each other down.
💋

Asking For Help……

Asking for help, is the hardest thing when you are chronically ill……WHY???

Simply, because when we ask for help, it’s acknowledging that we can’t do things for ourselves anymore. Admitting that I required assistance for particular housekeeping chores was such a big thing for me – but I accepted it but I held back from accepting the personal care help, because by accepting that help was me becoming worthless. By knowing that I can not safely go into the bathroom and shower myself is heart wrenching. I’ve had to really search deep within myself to allow personal care to be ok and do you know, I think I am now comfortable with it because I know my safety is paramount with me being able to being able to still live and love the life that I am in.

So what is this home & personal care that I talk of?

Home & Personal care is provided by home care workers who visit people that are somehow incapacitated by illness or disability in their own homes and help them to live as independently as possible.
It’s about maintaining a person’s quality of life in their home – keeping them safe and comfortable, attending to their physical needs and supporting them with their daily activities of living. It’s also important for their social and emotional needs so that they can still enjoy life. As I mentioned earlier, these services help those ill or disabled or it might be for people getting older, who are chronically ill, or perhaps recovering from surgery or disability.

There are many reasons and times in life when someone might need help with daily activities, perhaps a family carer needs to get out of the house and a care worker can come in an provide a few hours of respite care, an adult child may have relocated house to another city or town and can’t help their elderly parent with tasks around the house anymore, a degenerative illness or disease may affect a persons ability to complete activities of daily living like meal preparation and daily grooming.

When the care worker comes to the home, they may need to help with the cleaning of certain areas of the home, making beds, mopping and/or vacuuming of floors. Personal care workers maybe called on to give assistance with showering, bathing, toileting, getting dressed, shaving, helping the particular person in moving around, or perhaps getting in or/and out of the bed and of perhaps medication reminders.

After having my home care workers now for a number of months I am so very grateful and I now look forward to my personal care workers coming to help me wash my hair and generally freshen up. 

Life is about now and I can’t push things away just because it may be icky or intrusive – if these workers can help us still live it’s worth taking a chance and that’s what life is all about. 

Carers help life continue for the chronic illness goddess/warrior and I for one stand in honouring them for all the work they do for us the chronically ill and disabled.

❤️ 

Walking, Talking And Sharing The Good, Bad & Indifferent of Chronic Illness……

It’s just going to be one of those weeks! Last weekend, I only did things that everyone else would do – go to the shopping centre, cafe and to my daughters to help her clean her flooded apartment! But yet – the last two days, I’ve been floored, seriously floored! As I lay on my sofa with my heated throw, hating that I have not even been able to participate in normal regular activities and this is the worst part about having a chronically invisible illness. It is a life sentence, and unless there is some miracle cure, its with me for forever, there is no getting better soon, no happy ending, there is no end in sight, there is no cure or end game.  It isn’t even the physical pain anymore for me thats the hardest thing to deal with, it’s the emotional and mental pain that goes along with it. The guilt, that I am a burden to those around me. Days , weeks like these feel like I’m  being crushed, that these illnesses are drowning me and swallowing up the person that I am, leaving only a shadow of the woman that I am and in place is a patient that is ill and weak. Its so hard to deal with.
How am I supposed to fight this emotional and mental choking when simply my illnesses are never going to leave me!  If was to have a ‘normal’ illness ( whatever ‘normal’ is) I would see my doctor, I would get a diagnosis, receive my treatment and get better. These illnesses just dont follow a schedule like that.  Oh no, my diagnosis were long winding and so very difficult as my symptoms intertwined like a tangled ball of yarn. It was frustrating and confusing for me and the many specialists and it still is.  Even as I’m scrambling these words in my journal it is so hard to truly describe this tiredness that never really goes away, or the numbness that fills my limbs, not to mention the twitches constantly moving my arms and legs. Being constantly ill like  this is like living in a dark hole of doom and I hate it because I know my true spirit is a positive free spirited goddess. I can’t plan anything as I  have no idea how i will feel when i wake up, or when I will go to sleep. It is so hard not to feel anxious and depressed when I live everyday in a life where there are more questions than answers.

People have no idea of how to deal with chronic illness, both the person who has it and the people around them. There is no textbook for living with these illnesses, so when I’m asked what do you want or can I help you –  I can’t answer their questions because I don’t usually really know myself.  You see when you have an illness or illnesses like these it’s your body, literally fighting against itself. The physical side of it is your  body living in constant aches and pains, tiredness,  toilet trips to self catheterise, medications, food intolerances along with many hospital appointments and stays…….and the list goes on. This is not normal living which really drains me mentally and emotionally.

What I’m trying to show you is that I feel like a failure, constantly feeling letdown by my own body.  I constantly feel guilty, like a burden to others. When my illnesses take hold like this I feel like im having life squashed out of me. A heavy weight hangs over me that my illness affects my husband and children ( and I’ve even lost some because of them) that I am not the wife he deserves or the mum they need. These stupid illnesses hold an embarrassment within me that my body is so broken.

Yes I’m rambling these words because it is a bad day and stepping towards a bad week, but I know that tomorrow or next week, it won’t feel so chronic and the good days, where I have less pain, fewer dizzy spells making it easier to move around with my walker and this will increase the higher positive energy in myself, I will again feel proud of myself, that I got through yet another bad patch and I will enjoy the life that I live in.

This is my life and i have to learn to live and love it. Ive certainly learnt that life does not always turn out to be the one that I hoped for, but it is the one i have and I can’t change that. Ive had to learn to embrace and enjoy the good days because seriously I don’t know when the next one will be but they will come again. I appreciate the smaller and more present things in life now. I have to take control of my own future and try everything i can to make health better, through simply walking, talking, sharing and living the good, bad and indifferent of chronic and invisible illness.

This is my life with chronic and invisible illness what is yours. 

‘Let’s not tear each other down, it’s about walking together’.

💋

Stand Strong, Stay Strong & Believe…….

Walking a journey with chronically invisible illnesses requires self belief!Why belief, well firstly, we need to know that our chronic illnesses are not in our heads. Ive learnt how critical how much being in the right mind and brain space plays a huge role in the steps with living the best possible life I can. Secondly, i can’t just think my way out of my illnesses. I or anyone can wish and hope for better days BUT very little comes from sitting, waiting and wishing. Nothing will change and actually wishing and hoping may actually make us feel more anxious, down and depressed.

When there is a sense of belief, with positive concentration, mindset and attitude, the drive for living despite the health challenges improves dramatically – yes my symptoms are still there but the actions let me walk taller through the challenges. So beliefs are oh so important for the chronic health walk of life. Our beliefs are formed from a state of mind that indicates what we are thinking is true. Beliefs form our behaviours. So when we form positive beliefs we can see how believing a certain way can affect us positively. Our behaviours absolutely need to support our beliefs because if we feel sad and depressed about our circumstances and situations, we will feel powerless and useless and we will most likely become closed in and shut off from life and our illness will dictate our paths and when this happens we become the identity of our illnesses. So stand true, stand strong to who we are, believe in ourselves, our message and our life purpose because when we believe that is true, we are so much more than our chronically invisible illnesses. When we believe in ourselves, we won’t feel like giving up even on those days that feel all too hard (and yes there are those days).

Let’s NOT tear each other down, it’s about walking together being strong and staying strong.

💋