Dear Life……

Dear Life,

Am I doing this right?

 I want you to see me tonight (because I’m struggling) and I need you to hold my  hand tight showing me the way through this next wander through the chronic illness jungle with functional neurological disorder. 

She (FND) is a bitch and she comes and pushes me over just when things are looking up, but I am a survivor and I know dear life you will bring my feet back to the fresh ground of earth and what’s real and what’s true. 

Dear Life, please hear me tonight.

Love the little barefoot FND goddess

💋

My Walk With Invisible Illness…..

We are in the middle of Invisible Illness Awareness Week, so i’ve been thinking of a way to talk about what it actually is and how it affects me.

So to define invisible illness;

Invisible illnesses are chronic illnesses and conditions that significantly impair normal activities of daily living. 

The definition, tells us what it does but their are so many different spectrums of invisible illness, that everyone’s experience is different. My journey with invisible illness involves a complex list of illnesses, which include; fibromyalgia, mixed connective tissue disease including lupus SLE and Wegeners Granulomatosis, Ulcerative Colitis, anxiety, depression and functional neurological disorder. Each one of my illnesses joined together mix a chronic cocktail to significantly impair my life walk.

So, I’ve defined invisible illness and what it is to me, now what does a average day look like. This, is difficult to describe because everyday can be so very different to everyone that lives with these most chronic and varied conditions. So let me tell you a little bit about of how invisible illness can affect me, on any given day. My invisible illnesses leave me feeling so exhausted, that I feel like I am clinging to the edge of life but because nobody can see what and how I’m feeling, many times people judge me and tell me that what I’m feeling is not real, other times that I’m just a failure and many times,” oh Lisa Raie you are looking so well” but seriously I may be having one really bad day. Having people say these type of things, makes living with such chronic and complex invisible illnesses oh so, very lonely as I get so tired of having to prove my illnesses. I have infact lost many people along my journey. For the ones that I still call family, friends and colleagues they know that plans may need to be changed or postponed when pain and illness cause immense problems.  

Every day  I do the best I can, if I need to sleep, I now sleep, if I need to change booked commitments, I will change or cancel and if I’m told that I’ve let someone down – I just have to deal with it. It is hard to take when people get angry or upset, but I know that as much as I try and make them understand they can’t – why because unless you live with these chronically hidden illnesses, you can never feel what I am feeling. Many times, I’ve felt like saying – ” I wish you could feel what I feel ” but seriously I would never want anyone to feel what I live with.

Living with such invisible illnesses has taught me to be strong at times when I thought that my time maybe up. I’ve learnt what never giving up really means and it’s why I’m now wandering the globe talking and sharing my experiences so that those uneducated and ignorant to invisible illness become aware. When we can all walk together, it is my hope that further help, assistance and change can be given to all the invisible illness warriors and goddesses.
If you’ve resonated with my words, please connect with me over on my social media channels because we all walk as one and it would be great to walk as one together rather than tearing each other apart.

💋

http://www.facebook.com/iamfndaware

http://www.twitter.com/FND_Goddess

http://www.instagram.com:fnd_goddess

SnapChat – simply_lisaraie

You Don’t Need To Be Perfect To Make A Difference 🙏🏻

Sitting here writing for myself and for this world that I live in I realise that, I’m not a perfect person, I make a lot of mistakes but still, I love those people who stay with me after knowing how I really am. And this my friends is why despite my limitations and challenges, I will succeed in making such a difference to the way this world treats and sees #chronicillness. Because I am a barefoot goddess and a survivor.

This is life and it’s about walking together NOT about tearing each other apart. 💋

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.

❤️ 

My Message….My Truth 💋

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If I have one message for this world it’s this one – “Let’s not tear each other down, it’s all about walking together”. ❤️

Will you walk with me for a greater understanding of chronic & invisible illness. 

💋

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.

💋