The Shopping List…

The other day I was preparing for my eye exam and looking forward to getting some new glasses and better vision, and as I waited for my appointment the sales assistant bought me a form to fill out, and there on this form were the two little ubiquitous words that I dread so much these days. 

Medical Conditons:
Oh how I hate that question! 

I remember a time when it barely even raised an eyebrow and I simply left it blank, but now that feels like such a long time ago now. A life time ago now. Now these words are a sad reminder of these constant struggles. 

As I finished waiting for the optometrist I started to contemplate the following ideas…

Whenever I would prepare to go grocery shopping I would always find myself writing a shopping list. I used to enjoy grocery shopping, but most of all I enjoyed writing lists; I guess it is par of the course when you are a Type A personality. However well prepared you may try to be the fact remains that when you do finally reach the grocery store you will often find ancillary items that will be added to your list and when you get home there will often be times you will have forgotten of will need to get at a later time. 

My shopping list of illnesses has become sadly similar. 

The list has been steadily growing over the years. There are some illnesses I have yet to have diagnosed, and then there are the ones that may be waiting their turn to make a surprise appearance. 

Nowadays I must ask for another piece of paper to complete my list and to complete the list of Medications that appears further on down the form. 

I find it perversely humorous that I am now at a point where I have been prescribed medications that even doctors have not heard of, for conditions that they were previously not aware of. EPI is a good example of this. 

I remember the days when even I hadn’t heard of these illnesses and diseases. I lived in joyful ignorance of them all, despite the fact that they may have been percolating inside me for decades. Ignorance can truly be bliss. 

Nowadays I carry the list with me everywhere I go. 

I remember conversations with my elderly relatives where I would listen as they would say how their arthritis and lumbago were acting up whilst swallowing blood pressure tablets and cholesterol medications. I thought to myself how I would hate to reach that point in my life. These are somber recollections to me now. 

However much you may dread returning home with your bags of shopping, you must still unpack them all and turn them into meals or use them in your everyday life. They are yours and you must use them in the best way you can. 

No matter how long my list grows I must still make the best life I can and do my best with what I have. It is for this reason that a have rarely referred to the list to my friends and family and don’t make a habit of listing them all. I simply called myself Autoimmunitygirl and left it there. One word to encompass many experiences and struggles. 

Listing all the autoimmune diseases and ancillary illnesses that I have collected would only serve to dampen my spirits and make me feel the emotional weight that these labels can carry. So I try not. Often I will hand the form to my husband who will take on the task of completing it and I am eternally grateful that he does. 

I know that not referring to the list and explaining each illness will cause a gap in how many people may be able to understand what I may have to contend with and the extent to which I must struggle each day but I believe in my heart that no one can ever truly understand unless it was happening to them. 

 Underneath the shopping list of illnesses and diseases remains a person who is determined to have the best life I can in spite of the physical limits that are being placed on me.  

Gentle hugs, 


Coming Out …

We often associate the term Coming Out with a milestones within the gay and lesbian community. Coming out as a gay person, I believe, is a very big step and is probably filled with many emotional challenges. 

I am mindful of how difficult that coming out must be for a gay/lesbian person and I can only imagine what reactions they encounter from their friends and loved ones. I won’t pretend that I know personally. 

I like to believe that friends and loved ones would want to know and want to share their support for their gay/lesbian loved ones, but I know that the reality can be vastly different. 

After centuries of discrimination and oppression the homosexual community still have many struggles and still fight for basic human rights. Sometimes I find it difficult to believe and even harder to accept that this is where we are as a society. Still. 

However, this piece is not about the plight and the rights of these brave and wonderful people; although I do hope I live to see sweeping changes in my life time. This piece endeavors to draw tenuous similarities between how people feel that they must hide their realities from main stream society. 

In the case of the chronically ill, rarely will we make our struggles known or publish pictures of ourselves when we are sick or suffering with chronic challenges. Even with other chronically ill fighters. 

I can only speak for myself, but it feels as though it’s not allowed. There seems to be  an unspoken rule about showing anyone your truth; so I don’t. 

If I post a picture of myself on Facebook or social media I will endeavor to show myself at my best, even if my best lasts only for an hour before the meds wear off and I am in tears and pain again. Even if my best requires assistance from my husband/carer and strong drug cocktails. 

Sometimes a forced smile and an outing is too much to manage, despite how much I yearn for them. But I feel that sharing my pain and reality with the rest of the world will somehow make me even less acceptable and label me as a whinger or seeking sympathy; So I don’t. 

The truth is that the last thing I want is sympathy. Sympathy doesn’t change or help things. However I would like people to know that there are reasons that I am not the person I was and hope that it might help them understand a few things through my eyes and reality. After all, we become close to others my getting to know who they are and their experiences of life. It’s how lasting bonds are made and sustained. 

Sometimes I have posted a picture on Facebook of a swollen joint or a painful spasm and I may get a comment from a few fellow chronic fighters wishing me good luck and comforting thoughts, but rarely from healthy friends / family. Rarely do they make comments so it makes me feel like it’s not acceptable and that I should keep my realities to myself; Despite leaving comments about their children’s party, their last meal, their holiday antics or their smashed up cars. 

Those of my friends or family who have had children and have shared the difficulties of sleep deprivation and various other child raising issues seem to get a lot of support and appreciation from their social networks, but that same appreciation  doesn’t seem to extend for those of us with chronic issues. Why? 

Coming out as chronically ill person who must deal with pain, progression, a myriad of symptoms, fatigue and isolation, it becomes a huge decision and carries with it great risk and consequences . 

You stand to lose friends, family, employment and many other opportunities, through no fault of your own! It’s incredibly unfair and indescribably painful! 

It is also worth mentioning that there are even some chronically ill people that may feel the urge to judge you as well. Perhaps this is where the chronically ill and the gay community differ, I hope that they don’t judge or criticize each other for coming out or sharing the realities of their everyday life. 

I have been forced to think that my reality might seem very boring or uneventful to many people so I try to edit my life accordingly. 

I long for the day when sharing a recent struggle or painful event is acceptable for public consumption and will not cause  embarrassment or labeling from friends and family. 

I often shake my head when I think that this is a time where it’s normal to share naked selfies, sexting, and pictures of drunken exploits but shameful and self indulgent to show the cruel effects of life with diseases. 

It seems that even today in 2017 the rules of dont ask, don’t tell apply to many different groups and many different situations … and almost always hurts those who least deserve it. 

But I will always live in the  hope that things can, and will, change. 

Gentle hugs, 


To Treat Or Retreat?

I am at a point in my journey where the past years have seen me do many tests, take lots of drugs, visited many specialists and receive more diagnosed diseases… 

I find myself asking “how much is enough?”

Rather than continue down this road of unearthing more issues and starting new drugs for diseases that have no cure, I now wonder whether I may be better off simply spending the time coping and finding a little place in the country to simply live out my days as best I can. 

This is incredibly inviting to me at this time since there doesn’t seem to be any way of avoiding or curing the pain and disability that I now live with, so maybe the time I have left can be better spent and more enjoyable living the simple life. The life of a country recluse. 

I have been looking at tiny country cottages and imagining a life even more removed than I already am. 

What could possibly be wrong with such a plan? 

Even the stress of suburban life, city traffic, constant specialist appointments and urban sprawl is too much for me now. I yearn for even more simplicity. 

I feel now that I really don’t need much in terms of luxurious accommodations, a simple ‘disability friendly’ home is all that is needed. A garden to sit in. Room for my furry children to roam, living within  driving distance to stores and supplies, and within safe distance of a hospital in the event of a medical emergency. 

It is tugging hard on my heart strings! 

I guess I really won’t know if it will work unless I try and perhaps there is a way of ‘dipping my toes’ into such a life first? 

While the questions have been swirling around my mind and heart I keep asking myself “… should I continue to treat or plan my retreat?” 

At least I can say without hesitation that after 10 long and exhausting years I have certainly done an enormous amount of treating and now I should consider giving myself a chance at the alternative. 

… to be continued 

Gentle hugs, 


Dark Pools

Some people are like dark pools of water. Irresistible and mesmerizing. Drawing you in and filling you up. 
A soothing bath. Warm. Surrounding. Penetrating. 
Deep with unseen knowledge and emotions. 
And you will never want to leave, 

and you can never forget. 




You don’t marry the person that never hurts you but the person who stays to help clean up the pain for as long as it takes. 
You don’t marry the person that is easy to be with, only to live as two friends and nothing deeper. You marry the person that you can’t live without. That you can’t stop thinking about and feeling them moving inside you. 
You don’t marry the person that offers you wealth and comforts so you have nice trinkets and a fat bank account. You marry the person that offers you room to grow and things to work on. 
You don’t marry someone because it’s your time. It’s your duty. Because your scared of losing your chance. Because all your friends are married. You marry someone because your heart is ready for challenges you can’t possibly imagine and a journey with no destination. You’re ready to let go control of your heart to the person who wants to protect it with their life. 
You don’t marry someone with a plan of what to do if it doesn’t go your way or when it gets hard. With an exit strategy. You marry someone by diving into the unknown with your entire being, so you must fight for it, knowing there are no safety nets but the ones you make together. 
Marriage is not about vows and words, but actions and feelings. 
It’s not about gifts or titles, it’s about promises and dreams. 
It’s an invisible connection binding your hearts and directing you like a compass, with the strength of an orbiting planet. An unstoppable force. 
Marriage is the fertile ground where everything grows and flourishes and where beauty is everywhere, even in the darkness. 
It’s a smell that can’t be bottled. A feeling that can’t be explained. A place that can’t be found on a map. It’s an unbearable pain and unspeakable beauty. 
Marriage is more than love. Love is only an ingredient. A mere sound in the opera. A colour in an endless colour pallets …
but love is the spark. 

The beginning. 

The smell before the rain. 

The first leaf of Autumn. 

The belief. 

The hope. 

The reason. 
… Until death do us part