Sick In A Strange Land…

This piece may resonate with some of you out there and I hope it gives pause to some others who might be contemplating a similar situation… 

I am referring to the fact that my fiancé and I had just moved to a new city when my ongoing health issues decided crash land me into Autoimmune hell. We knew absolutely no one. We had no close friends and family around us and no familiarity with our new geography. We didn’t even know where the doctors were!

Being sick in a strange place is hard. Very hard!

Try to picture an episode of survivor and then imagine things are 100 times worse. 

Today it has become a matter of just pushing on and coping on our own, but that was not easy for either of us. Besides me, my husband had no help whatsoever or offers of help. 
We are lucky that we eventually located a few services, medical practitioners, made some local contacts and some online support groups to help us through, but it took years to discover all this and years more to acclimatize. 

Would I recommend this to other chronic people? No.

Sometimes it can be important to be around some supportive groups and connections when these life events happen, especially at the beginning. However I realize everyone is different. 

If I knew then what I know now I would not have wanted to be a stranger with an debilitating illness, trying to navigate everything. It can be so overwhelming. 

Finding your feet can take years. Even though the odds are that you face losing a lot of friends and family support anyway, you may benefit from their availability in the beginning. Especially if there are work / life factors involved. Moral support in the early stages is a blessing If it’s administered properly and respectfully. 

On the flip side it could also mean you will start this new phase exactly how you will end up… on your own. You become accustom to coping and improvising. It really just depends on what skills and strengths you may have. What past experiences you may have in your favour. 

Personally we found complete strangers just as, if not more, understanding and encouraging and this was a revelation indeed. 

Knowing where you are and what is around you is definitely an advantage because no matter who you are or how clever you may think you are having a very challenging health situation is like landing on Mars! You can’t know what you will face until in happens and everywhere you turn is a huge challenge. 

If you are in a supportive and familiar place then I would encourage you not to rush into a move or relocation lightly. There is some truth in the saying better the devil you know… Of course there is always exceptions to the rule. 

I have played the what if game many times over the past decade but in our case being sick in a strange land has not damaged our relationship or coping. We have worked damn hard to make it and it has really highlighted what is important in life and who is important in life. I feel proud of what we have achieved given the hurdles we faced, especially when I know healthier people who haven’t coped with a fraction of the hurdles we have managed. 

Whatever you decide to do when it comes to relocation I truly hope it will be a step in the right direction for you. 

Gentle hugs, 


Pay Day 

Years ago Pay Day was the most wonderful days of the year. I would wait all week, all fortnight or all month for this day… and it was gone too quickly. 

Today Pay Day means something completely different to me and always will. 

It’s not the happy event I wait for. Far from it. It’s the days, weeks or months that I dread. 

Pay Day is what I call the days where I pay for something I might have done for myself or somewhere I might have gone to enjoy this life. There is never a time I don’t pay for these things. 

Today is Pay Day  I don’t know how long it will last  but it hurts and I can’t do anything but endure it. It has become such a very well know event for me and so it is almost not even worth mentioning anymore… although I still hate it. 

what did I do to earn my Pay Day? I spent the last few days in the garden enjoying some unusually pleasant weather. I loved it. The feel of the warmth and sunlight. The flowers. The wind blowing through the plants and trees. Breathtaking!… And now I will pay for it. 

Fatigue. Pain. Tremor. Spasm. Vision issues. They all turned up with enthusiasm last night. 

Cha Ching! … it’s Pay Day! 

My mother once said to me …

No good deed goes unpunished! 

She was right. She didn’t intend it to describe this situation obviously, but it is so apt. 

Every Autoimmune knows what I am talking about but very few others do. Even some health professionals have no idea how long and how heavy the toll can be. And you can’t avoid it. Ever. 

I am writing this for those who may be having a pay day today and for those who have no idea what a pay day is. May we all be united in understanding and support one day. 

Gentle hugs, 


A Simple Message

I wanted to take this opportunity to thank the readers and supporters of Autoimmunitygirl, and me personally, for all the support and kindness over the years. You have truly been  wonderful and a blessing. All of you. 

You have seen / read me through so many different events and challenges from out there in the ether and I am deeply grateful. Like throwing out a little message in a bottle into an unknown sea of people, it has been an act of hope and belief on my part and I am so pleased that these little notes have been found and read by some of the most amazing souls. 

When I started Autoimmunitygirl I wondered  which way I should take this little blog. What do I write? What should I share? What will be useful? 

Since there is already so much out there about medications and treatments, positive slogans and so many different Autoimmune sufferers, what could I offer? 

I didn’t feel it was my place to suggest anything about medications. I am not a doctor and, most importantly, I am also not the same as everyone out there who will have their own reactions and results. Although I am grateful for those who have assured me that my experiences are not unique! 

I didn’t want to talk about just Autoimmune issues like neuralgia or inflammation, surgery or blood results. People will have their own stories and experiences of these too. I am not the blue print for what will happen and some diseases take decades to diagnose. 

So I chose to write about day to day life. Thinking. Feeling. Realities. All the many things that happen when your body starts telling you that something is wrong. 

I realize I probably started out much more positive and now have become a mixture of pragmatism, hope, love, frustration, confusion and many other things as well. I don’t apologize for this and I believe I owe it to myself, and those readers who take the time to read my blogs, to always be authentic. And that’s what they get. 

So… I wanted to thank you. 

I appreciate you all coming on this journey with me and sharing your own thoughts and feedback. 

I hope that it does some little bit of good to help share with others who have no idea what life with unpredictable and chronic illnesses can be like, I hope I encourage others (and myself) to hold our heads high, even in our darkest times. And I hope this little site builds connections and understanding. 

You have become my friends and my family when my friends and family drifted away. You became my colleagues and peers when my own career was taken away. You also help me see things in different ways when you share your own insights and I truly appreciate it. 

I guess all I have ever wanted to do was to help make a small difference, time will tell if that has happened, but what I want to acknowledge and express is my thanks to you all for your support and honesty over the years. 

Gentle hugs, 



It’s not just the illness…

After ten years of fighting these illnesses and pain I realized something so astounding today that it left me speechless. I don’t really know why it didn’t occur to me sooner. Perhaps I am blindly naive at times. 

I realized that; 

It’s not the illnesses that have been the hardest battles, but everything else in life that can wear you down and break chronic fighters. 

By that I mean … as hard as these painful and debilitating illnesses can be, the worst parts for me have been,

1. The way others can treat you, label you, desert you, reject you, attack you and abandon you. Friends and family can disappear overnight and cause terrible emotional wounds that never heal. 

2. The way the medical profession seems completely unable to understand, cope and assist chronic illnesses. Some are even ambivalent to your suffering. It’s the last thing you expect from the caring profession. 

3. The way the world responds to you and dehumanizes you. 

4.  Medications are not as advanced as I had hoped or expected and the side effects can be devastating. 

5. Governments have no interest or compassion for those with long term illnesses or health issues. You are considered a burden and expendable. 

6.  You are invisible to society and not seen as courageous, brave, useful, wise, skilled, valued or important. 

7. Insurance companies treat loss and misfortune as opportunities. They have no care for people and their suffering. They make money from that suffering and you must fight long and hard for any financial assistance. 

8.  People’s expectations and demands on you. People expect a lot and give little. You are not valued like other human beings.  

You must contend with so much pain and disappointment from the outside world that it makes the illness itself pale by comparison. 

I have learned what it is like to writhe in pain all night and even be thrown into complete wretchedness, unending physical suffering and attack, but that is still nothing compared to the hurt and heartbreak that awaits you from almost every place outside these four walls. 

That has become the place where real pain, disappointment and devastation lies.

And I dearly wish it wasn’t so. Perhaps one day…

Gentle hugs, 


Dare To Share 

This is how I shared my autoimmune struggles on my Facebook and Social Media spaces. Perhaps you can relate? ————–

There have been many times over the past decade in which I debated about sharing the realities of illness and challenges with the people in my life because years ago I worried about what reactions would be. I had some very sad and disappointing reactions in the past … but I don’t agonize anymore. 
Today I see those hardships and struggles as part of my reality and my life and so I refuse to hide or be ashamed. Ever. There are some that will always react with negativity about things like health but that says more about them than me. 
My illnesses don’t define me but they are part of who I am and what I go through every day and therefore I am just as proud of myself for what I have managed as someone might be for achieving a PB at the gym, climbing a mountain or some other act of physical and mental strength. I refuse to look down upon my battles and I am in awe of those who have grown and learned WITH me. Who have stood by me and believed in me. They are every bit as remarkable over these many years. 
Illnesses no more define my life than my career defined me or my relationships defined me but they are ALL part of who I am today. I reject the stigma that I shouldn’t ‘talk about it’ as it may not be popular or ‘pretty’. That is more an indictment of society not me. 
Those who love me and care for me will do so regardless of my health status. Regardless of my financial status or any other ‘status’. That is how I choose the people in my life today… underneath all my relationships today I look for love and respect. 
I believe I don’t have to ONLY talk about the good, the pretty and popular things in life. Although I freely share them also with those I love and call friends. It’s all life. It’s all the reality of living. 

That’s how I see it and that is how I will always share it 😃
Love always 


Tried And Tired 

If I read one more article telling me how to beat my fatigue I swear I am going to scream! Honesty. 

I just marvel how these so called experts dispense their advice and opinions without ever actually having an Autoimmune disease, let alone several! But [they] will dispense the most erroneous and harmful information that can have the most disastrous and painful results. Physically and emotionally! 

I shake my head because what [they] will write or say the average nonsufferer tends to believe, even all the misinformation and conjecture. And what [they] write makes sufferers feel more and more demonized, confused and rejected. 

The type of fatigue that I experience does not respond to exercise. How do I know? I tried!!!!!

Everyday that I tried to push myself my body has punished me for it. The more you kick these diseases the more they kick back. And they kick back hard. Harder than anything I have ever encountered. Ever. 

I have tried everything from swimming, yoga, Pilates, weights, stretching, walking, recumbent cycles … and so on. Nothing has worked to stop this symptoms progression or this feeling of drowning and lead weights tied to my entire body! 

And then they will start talking about diet…! 

Oh my god don’t get me started!

Do people honestly think that an intelligent, dynamic, career orientated, educated and outgoing woman like me would not have tried anything and everything? Really?? 

Gluten free? Tick. Paleo? Tick. Dairy free? Yep. Juicing? Yep. Low carb? Yep. FODMAP? Yes. Supplements? I think you can guess what I am about to say… 

And NO I don’t drink or smoke! 

This type of fatigue is crushing and everyday I am reduced to tears as I crawl my way to the shower after sleeping for 10 hours, and then  needing to go back to sleep for another 2 hours. A far cry from the woman that slept for merely 4 hours a night and worked over 120 hours a week!

Today I haven’t been out socially for months or taken a holiday in almost a decade. 

Each day I have a window of maybe 6 hours in which to love my husband, hug my furries and maybe sit in my garden before the fog engulfs me again; like quicksand 

For those who still have relatively good control of their fatigue then I suggest you cherish this closely. I hope you can keep it and I hope it never leaves you like this. I truly do! 

For those who may be in a similar place as me where you have to measure what you do each day carefully, including showering, eating, dressing etc than you will have some idea of what I am writing about. And you also have my sincerest respect. 

We can not afford to listen to the noises of those who have no idea of what this is like, no matter how convincing they may seem, don’t let them get in your heads or hearts! Don’t let them tell you you must be depressed or some other diagnosis simply because they don’t understand this symptom better. We need to be strong and teach them. They must listen to us if they are ever going to be of use in solving this. 

In the meantime our focus must be carefully aimed at managing the life we have and the few chances we have to get something from living. That is all I try to do now. My precious time can not be wasted. Not a second. 

Fatigue is a grossly underrated part of autoimmune life and I would gladly live with more pain if I could trade in the fatigue that haunts every waking moment of my life. I would even live without a limb to be rid of this insidious life taker. 

I try to keep doing all the things I know people in my position should do like eating healthily, drinking enough water, avoiding stressful things and drama, doing whatever movement and physical thing I can and trying not to look down on myself and my disabilities. 

I take my meds. I take my supplements. I don’t smoke. I don’t drink. I meditate. I think of others. And I refuse to let people tell me things that only I can truly know for sure… like what life is truly like for me and how hard I try every day of my life. 

Gentle hugs, 


Realistic Expecations 

Time doesn’t heal anything but it teaches us how to live with pain and recognize the pain in others. 

These days it seems anything that isn’t overly positive, fun or inspirational is considered a four letter word and simply unacceptable. People have come to rely on regular fixes of optimism, validation, and excitement like an addict needs heroine… 

but why? 

Why is accepting that life can be repetitive, painful, losses, unpredictability, responsibility, anguish and struggle so unacceptable? 

Before illness I lived life like most people who are fixated on cliches, memes and absorbing every trite little platitude, believing that doing so would somehow make me happier, better and more successful. I saw people struggle around me and thought it must be caused by something  inherently wrong with them… But life kept doing what it will always do until I found myself in a position where I had to finally face some hardships for myself. It helped open my eyes to the true realities of this life!

It was my denial of life that was causing me such torment and constant confusion. 

I believe that a great deal of the hardships I have encountered in life were made worse by my constant need to always cling to happiness and never allow myself to face things like pain and grief face to face. I tried to avoid a painful or difficult time by constantly going around it or avoiding it altogether. 

Becoming ill allowed my eyes to finally open. 

The truth is life is not meant to be all rainbows, sparkles and bliss. Sometimes it can be full of very hard challenges. 

Life is mostly froth and bubble,

Two things stand like stone.

Kindness in another’s trouble,

Courage in your own.

Adam Lindsay Gordon

While we are so obsessed with constantly chasing the next pleasurable moment, the next victory and inspirational high we are forgetting that some of life’s truest and greatest messages and lessons are hidden amongst the troubles and challenges of life and some of the most wisest and most balanced souls are those that live in the hardest of circumstances and yet allow themselves to grow within it. 

It is so true that we can not understand what light is without the darkness? Nor happiness without grief and sadness? What companionship  is without experiencing isolation and lonlieness? They are meaningless concepts that can never be truly appreciated unless we go through it and let ourselves be vulnerable and learn. They are normal life experiences and not a sign of a worthless person or a meaningless life. 

It is our obsession with not wanting to face reality or feel and experience the painful, awful, grueling and horror of what can happen in this world which has caused many of our addictions, suffering, isolation, greed and inability to empathize with others. 

Distraction, instant gratification and self indulgence are the byproducts of refusing to accept some of the harsher and darker aspects of  living and our human natures, and this can also rob us of our abilities to learn, cope and grow. 

More importantly, it prevents us from seeing and discovering the world around us and form any possible solutions, understanding or answers. 

Years ago I couldn’t really understand notions like pain, loss, grief, humanity, fragility and suffering because I was taught to believe they were signs of a weak spirit and untrained mind. A mind not always reaching for the stars or success. I see those same ideals everywhere around me now and I truly believe that it has diminished us a species rather than made us stronger. 

We refuse to see the pollution, the cruelty, the violence, the inequalities, the discrimination and the devastation around us, believing these things to be negative, unnecessary or annoying, however if we only opened our eyes and minds it might enable us to try to do something about these realities.  

I believe that remaining distracted, numb and ignorant or by relying so heavily on the media, entertainment industry and politicians to distract us while we continue to pursue only the pleasures, comforts and materialistic objects in life we can not evolve and move forward as a species. 

A balanced mind and heart requires both imagination and reality. Empathy and knowledge through experience and understanding. 

Living a valuable life does not mean always having the best of everything and only seeing the best in life. Being able to accept, adapt, change and absorb what life is truly showing us then maybe we can see the full picture and the lessons around us. 

knowing some of these harsher realities of life and the human experience could help us appreciate and respect each other better. 

Although I hate the endless pain of chronic illness and I hate the challenges and hardships that I am forced to endure day after day, I have also come to accept that this is not a reflection of my weakness or my failure in life but it is merely a reality of life and living. A reality I share with other sufferers all over the world. Grief, loss and struggle are all aspects of the randomness and chaos that underlines our lives and existence. 

Realities like illness, disease, poverty, abuse, violence and addictions are realities of this world that we have created and endure. Perhaps as we experience we may also learn to empathize with each other, rather than ignore and devalue each other. Maybe we could form better relationships with each other and with the natural world around us. 

As I have experienced more of the hardships of this life I believe I have learned to value things more and set more realistic expectations of myself and those around me. This has far more meaning to me than life did when I was constantly struggling to always be happy, successful and positive every moment of my life. 

Perhaps others may agree too. 

Gentle hugs,