Money Matters

Probably one of the hardest conversations to have when you become very ill and disabled are those around money and finances.

When people first become sick and ill often their first thoughts will go to their jobs, careers, incomes and security. These are very important to being able to maintain and sustain our lives. It is vital that we try and support ourselves and it is often for these reasons that we feel the most vulnerable and alone.

I was extremely worried what would become of my health and my relationship when I first become very ill as I was the primary income earner. It was a truly terrifying prospect and my husband and I did our best to show courage and take things one step at a time.

It was quite surprising to me that when I spoke with friends and family back then their prime concern was for my financial situation more than my health prospects. I recall that it was both strange and sad to as I look back. I felt that my health and how I was feeling emotionally about all that was happening to me was far less important than how I was going to earn money or support myself.

Some people even started suggesting ideas of ways that I might be able to work from home and do some things from bed, this was even before they knew what limitations or symptoms I was experiencing. It was clear to me how society rated my worth and value.

As the months wore on some people asked me when I would be returning to work and what my plans were to earn a living. Sometimes someone would suggest welfare payments and how then caution me how difficult it would be to access such benefits. I recall that I began avoiding even speaking to people as it became extremely predictable what they would say despite the fact that they should have been aware of how painful and stressful these topics were.

Another interesting point during these times was that despite financial concerns being the prime topic of conversation to those who seemingly closest to me, not one offer of support or assistance was ever offered. Ever.

It was almost like people dreaded the idea that I could or would become dependent on their financial support despite the fact that I, myself, had given aid and assistance to many people during the course of my life.

All of these things made my husband and I even more determined to never seek help from anyone and never to discuss money to another living soul. We would do whatever we had to, sell whatever we had to and go through anything necessary to make a life on our own.

And to this day we have done just that!

Oddly enough that after several years of coping by ourselves, that a common remark from people was “how on earth do you manage?”. Their questions seemed far from that of genuine concern or admiration and were more about wanting to pick up some tips or ideas for themselves. Curiosity more than kindness.

As the years passed we were extremely proud of our own resilience and tenacity and how we had managed to solve many of our own struggles all on our own. Careful planning, budgeting, research and good choices were slowly paying off. We also reminded ourselves that if anything should ever change or tip the scales we would always be prepared to sell everything and live as meagerly as we had to. No exceptions.

It obviously was beneficial to our circumstances that neither of us drank or smoked. We rarely went anywhere. We didn’t eat out. We never went on holiday.

When you are facing the daily battles of moving, breathing, eating and basic functions like this it becomes no real sacrifice to forgo luxury homes, modern fashions and expensive holidays. It was surprisingly easier to imagine any adjustment that might be necessary as we became increasingly grateful for any and all the small things in our life. It was as though only the healthier and able bodied people were the ones who were more obsessed with such things and are always wanting more and more.

As an ill person I found I craved simplicity and minimalness. Achievements and validation became a deeply personal thing and whatever we did or whatever we succeeded in was now kept solely between us. We lived outside the understanding or comprehension of most human beings and it became easier and easier to adjust.

Although over the last decade we could never have anticipated the number of people who would come to us for assistance and accept our charity and support despite knowing our personal circumstances and health status! It was truly amazing.

Those that were disparaging and suspicious of us financially were now sharing their tales of woe and gladly taking the help that I felt compelled to offer as an empathic and caring person. Even those that had suggested to my husband to abandon me due to my health and perceived reliance on him were taking money, gifts, help and support from us; me in particular.

Through careful planning, some risk taking, restructuring and research we have managed to keep afloat and have never sought help from anyone. Especially anyone supposed to be closer to us. It is one thing that we are acutely proud of and protective of but also makes me incredibly sad that this is how the disabled and chronically ill can be treated.

Over the past decade I have read, seen and heard the way people describe the welfare and support of the sick and disabled. It is deeply disturbing the way we can be demonized and called leeches on the social purse after many of us having given and contributed in our taxes and insurances. Especially when we have done nothing to deserve such judgements.

Every disabled person and autoimmune who has been forced out of their careers and financial security would give anything to return to the work force. Anything. We go through endless pain, medications, suffering and side effects for the chance to have our old lives back and in return we face an epidemic of public scrutiny and name calling.

As more and more money is spent on politicians, arts, entertainment, sports and many other areas it is difficult to understand why human life and disability has been deemed the lowest of concerns and priorities. It seems society always needs to demonize those who are least able to fight back or stand up for themselves. It is sad to see the fate that awaits an aging population at a time when there are more and more incidences of mental health problems and widening social imbalances.

Even over the past decade my husband and I have donated, assisted, supported, bought gifts, funded and helped all those we can based on our caring natures, love and empathy. I have always considered people’s personal circumstances and done my best to give of myself even when I have had so little to give, physically. However there hasn’t been a moment that my husband and I have felt that same support in return or regard for our unique struggles or challenges and we know we never will.

Over the years we have come to realize that, as with all things in life, people never appreciate anything until it happens to them. As such we have weathered the scrutiny, comments, judgements, opinion and suspicions of others whilst taking comfort in the fact that we have always done our best and faced challenges many can never comprehend. These days we often have people coming to us for advice and support despite having never received it ourselves. A bitter irony to accept.

I write all this in the hope that one day this may assist my fellow Autoimmunes and chronic fighters and that we will be shown the consideration and respect we so richly deserve.

Even if it doesn’t happen in my life time, I hope one day people will appreciate and see the true worth and value that chronic lives have and not simply see us as an unnecessary cost or expense.

Gentle hugs,


A New Voice

I realized something very important about myself in the last several days and it is quite simply that for most of my life I have been judging myself too harshly and overlooking many things I should be proud of.

It seems such a simple thing that I should have been aware of and even been trying to stop myself from doing all this time. But never did I truly realize the extent to which I had been over criticizing myself and looking down on myself until my husband mentioned it in passing.

I also realized that these judgmental voices are simply those that were put in my head from my childhood and they grew to be powerful forces all my adult life… They are incredibly destructive ones to try and share a chronic life with!

As I was doing my daily browse across the social media platforms and unconsciously comparing myself unfavorably to all those who people who are working, holidaying, getting fit, going out and generally living their lives, I would always be left with the searing pain of always not feeling good enough and not achieving enough.

The voices of my youth were clear and loud.

It is the emotional equivalent of putting your hand to a flame and being burnt over and over again. Never really being able to stop yourself. Always going back for more.

I have always envied those who were constantly proud of their accomplishments and were perpetually pleased with everything they did and everything they were, no matter how small. Such self esteem! Such confidence! Such bliss!

The other night during the darkest hours of 2 a.m. I started returning to the emotional flame again and asking myself “what have I to be proud of? What can I ever enjoy about my life?”

At that time my husband woke and saw me laying there in my usual silence. He slowly sat up and we started to talk.

He reminded me of the day he met me and how I was this young 30 something trying to work full time and do a full time law degree at the same time!.. And I was passing!

Few people could fathom what an effort that requires; until it had became too much to juggle and my illnesses were stirring away in the background.

He reminded me of the way in which I travelled to another country on my own to holiday and explore. Few people would even consider doing such things, but I did it and enjoyed it. He reminded of the bravery needed to step on the plane and go to a large city, to a job I had never done before, to a company I had never worked in before, without a home, without knowing a soul and to take on a management role. No support. No safety net. No money. No margin for error.

And yet we made it.

He reminded me of the way in which we handled losing so many of our closest loved ones in one terrible year. Four of our closest loved ones gone and yet we kept on going and working. And how we also moved cities again and new jobs with only each other for support.

And yet we made it.

He reminded me that since becoming terribly ill and battling so many physical challenges I still managed to carry out international I.T. Projects, travel overseas (wheelchair and all), start my own blog and advocacy page, renovate our home, start support groups for fellow sufferers, develop my artwork and enter art shows, keep us financially stable despite not being able to return to work, imagine and develop businesses, write guest pieces for health journals, rescue many shelter animals, generously help and support friends and loved ones, despite suffering unimaginable pain on a daily basis.

He reminded me that the very fact that I was still fighting on after over a decade of pain, suffering, rejection, loss, cruel comments, judgements, medications, treatments and side effects that I was still here and I hadn’t given up, been institutionalized, suicided or become hardened and unloving. He said this was amongst the most amazing achievements he had ever known. That many people will ever know.

The voices in my head never let me see all this until now.

Chief amongst all these achievements, in my eyes, is that we have worked together to create a strong, happy, fulfilling, loving, supportive, rewarding home and marriage that has withstood hardships and challenges that many able bodied relationships rarely survive. Even stronger than the relationships I grew up with in my childhood. We have done so without a moments support, encouragement or mentoring.

We did it together.

Often as chronically ill or/and disabled fighters we see ourselves as who we aren’t and forget about the many things we are. It is for this reason I have decided that every day I will devote time to seeing things and honoring things about myself that I never did before, until the voices become quieter and hopefully a new voice will have a chance to be heard. Finally.

Gentle hugs,


Staying Connected

It may seem completely unimaginable to many able bodied people but talking on the phone is incredibly difficult for those of us with chronic illnesses. Many of us struggle so much with staying in touch that quite often friendships and relationships can be broken simply through this lack of understanding.

For many years now I, and many others like me, have had to rely on text messages and online chatting to keep in touch with those we care about because the physical challenges of taking and holding a phone is incredibly difficult.

Often times I face the challenges of mouth sores, tremor, hoarse voice, debilitating fatigue, shortness of breath, concentration issues and crippling pain which makes talking to someone a Herculean task. I rarely explain these things to the other person as it is rather like explaining trigonometry to a cat… It just doesn’t mean anything other than mere words.

Because most people can’t imagine this reality or how this can effect someone they will usually take the view that you are antisocial, rude, unfriendly, lying or exaggerating and this only leads to a further break down in friendships and relationships.

Many years ago I used to worry and stress about losing people and them forming the wrong opinion of me, but as time went on and challenges deepened I knew I had to care less about what they though and more on coping with my own challenges. I reasoned that whoever left due to these hurdles were not really meant to last the full distance of human experiences and difficulties. I believe true friendships and feelings are something much deeper and enduring.

I recall a scene when I was in hospital after surgery where the lady in the bed next to me had a friend seated beside her patiently and quietly. I studied her as the hours dragged by and despite the fact that they had said nothing to each other she sat patiently reading a book and occasionally holding her friends hand. The lady in the bed was awake but simply stared around the room and at towards her friend. The nurse finally came with some medications and asked “have you been having a nice visit?” And to my surprise the visitor smiled and said “Yes. Lovely.”

I often think of this scene and the amazing bond they shared. Today I am in awe of such things as life has shown me very different experiences from most of my peers. I see relationships in very different ways. Bonds and connections that surpass the physical limitations of doing things together and for doing things for other people.

I look down at my beloved fur kids as they happily curl up beside me without a word needing to be said. They know when I am suffering and too pained to move but they love me anyway. There are many different levels of communication and connection and I have come to appreciate them more over the years.

Whenever I talk on the phone now I have to limit myself as much as I can as it can be incredibly tiring and invariably it will begin to take over. I try to endure that I make the most of the time I have and try to listen more than talk so that I can conserve as much energy as possible and interact for longer.

The other challenge I have felt when taking to others is that I feel like there is not that much that I can share of interest anymore. It’s not socially acceptable to talk about your health or pain and struggles and I really don’t want to talk about it anyway since I have to live it every moment of my life. But as it takes up most of my life it leaves little room for topics like holidays, careers, fascinating people I might have met recently or places I went to wine and dine. These things are no longer part of my daily life and so I feel that this makes me boring to people.

The irony is that while others may worry about possibility having to talk to me about my illness or daily experiences, I too don’t want to discuss them either. It’s just as hard for me to have to talk about and discuss since it isn’t what I want for my life and it’s not the happiest topic but since it takes up a big part of my life so conversations will tend to circle around it. Sadly.

Talking to people can be such a difficult minefield these days that I literally have to prepare myself emotionally and physically for them, and it takes time to recover from even a relatively short conversation. It is for this reason that my husband will often answer phone calls that may come unexpectedly.

These days those people who truly care for me and want to really make the most of a conversation with me will text me first to see if I am up to chatting. This is the way I know that they have some empathy and respect for my physical health whilst also wanting to catch up. It’s these people who I appreciate the most and they are also the ones that I feel most comfortable talking to about my life now.

Gentle hugs,


How Does That Make You Feel?

How Does That Make You Feel?


Probably the most closely associated phrase with psychologists and therapists is the “… so how did that make you feel?…” phrase. The very mention of those words can elicit anything from an eye rolls to deep skepticism in those on the receiving end of such a question. Perhaps some of the challenges that such a request presents is that; 1. Answers are often incredibly complex and difficult to describe and 2. Most people don’t feel comfortable about sharing their thoughts and emotions with complete strangers.

Over the past several years I have started asking myself this question from within the comfort and safety of my own mind. How did that make me feel? When asked by myself I get the chance to deep dive into my true feelings and to try and understand them without having to filter and sensor myself.

Recently I asked myself this question when I was evaluating the people in my life and those that I stay in contact with. I have also asked this question with respect to people I have known for a great many years… How did they make me feel? It’s only by doing this that it reveals many surprising revelations.

For example, although my mother and I had a frustrating and difficult relationship at times, but it was during the last decades of our time together that we became much closer than I ever could imagine and whenever we spoke on the phone I would always hang up feeling like I had truly connected and that we deeply loved one another.

Only now, when I have compared this to the way I feel after speaking with various other family members, that it becomes clear that some conversations lack the depth, love, respect, kindness, empathy, support and honesty that I shared with my mother. It also becomes clearer to me which relationships were mutually valuable and where I should be putting my time and energy now.

The same litmus test can then be applied to all the conversations and interactions I have with various other people in my life. If they don’t have a positive and reciprocal basis then I no longer feel it is worth the investment of my time and energy.

Sadly, It has revealed to me that many of the relationships I have cultivated and cling to over the years had mostly been one sided and had taken more than they gave. I look back now and recognize that I must ultimately take ownership for this and it is also my responsibility to make changes for future.

That doesn’t mean it is easy to do though.

I have also realized that the relationships which I have fed and always given to often resist me wanting to change the dynamic and have even pushed back to try and make me return to their former ways. At this stage of my life though I realize that I absolutely can not afford to go backwards and so I have asked myself “what will losing this relationship mean in the big picture?” If it means that I am no longer constantly the one giving, propping up, providing, and providing the care and concern than ultimately it really is no loss to me at all.

No matter who that person may be in relation to me.

Over the past decade of being this unwell and debilitated it really has been the ultimate act of strength and self compassion to stand up for myself at a time when people may wish to look down upon me or judge me. Although at first I didn’t see it as strength and self respect, it has become clearer to me that by letting go of the toxic, and not scraping the barrel for love and kindness, I have shown more strength than I ever had as an able bodied person.

But it isn’t easy.

These days I will only interact with those I feel care equally for me and give back as much as they take. I am always asking myself how does this relationship make me feel? And if the answer is that it is not positive or enriching then I will have to make the decision to move on and to let go.

I now realize that this is ultimately an act of great kindness and self love. The more I have exercised this ability the more I have become better at doing so with respect and peace. Perhaps because chronic fighters face daily challenges that most people can never comprehend that we realize that we can’t afford to waste precious time or energy on things that will not sustain us in our daily struggles and that won’t add to our overall happiness in life.

I have learned to be kinder to myself as a chronic fighter than I ever did as abled bodied person and when I ask myself how does that make me feel I have to admit I makes me very pleased.

Gentle hugs,


There are many ways in which our childhood effects Our later life, but it’s only now that I am becoming more aware of how it has effected my life with chronic illness.

One example that comes to mind is as follows…

Growing up my parents were very focused on their own lives and dramas and not really focused on parenting. It was very much a low priority to them. Later on I learned that my mother never really wanted children, and it all made a great deal of sense to me.

Although we became much better friends in later life, it was not easy growing up amid such a multitude of issues and dysfunction.

As a result of not feeling as though I had a voice or a priority in the family it is easy to see why I always put other people’s needs and feelings ahead of my own in later life. Even now.

I would never want to put people out, make them uncomfortable, burden them with my challenges, or even ask for help when it was needed. It has been a life long habit of putting my emotions last.

It makes things difficult today when I don’t go to

The Veil

I have been wondering whether to write this piece as it can be hard to read for some and harder for many others to understand, but whenever I return to the question of intention I am convinced I am doing the right thing for the right reasons.

And here it is…

By now, after all these years, many of my friends and loved ones have all learned about my health challenges. It was just a mere concept to many people and a great many chose to simply ignore it. I really didn’t mind which way people chose to go as it was far more important for me to be able to accept what was happening and less important why they left.

Time went on…

For these and other reasons I rarely explained in detail the challenges I was facing and so my health simply drew a veil between me and the world that everyone else lives in. I could see out but no one can see in.

Many autoimmunes are forced into this kind of life and existence, tossed around by a sea of forces that no one ever really sees or recognizes. It’s mostly overlooked but nevertheless that’s how I live now. That’s how I exist now.

Occasionally someone will come along and dare to see the reality and look below the surface but they are rare and I have to be mindful of what the real intention is. Is it to appreciate or simply judge? At this point few people know the truth of day to day life and it is often usually only other autoimmunes that will see and understand the most.


One day an old friend contacted me out of the blue, feeling overwhelmed and confused that a close relative of his had suddenly been rushed to hospital facing a diagnosis of a very difficult autoimmune disease. My heart sank for him. My mind went back to my own decent into hell and panic. It’s not easy and there are so many more questions than there are answers. It can feel like the sky has fallen upon you as you slowly start to try and put some of the pieces back together.

As the months have drawn on and the realities are slowly lighting up like neon signs for this dear friend I can only do my best (based on my experiences) to console and support him. He aches and empathizes for the loved one going through it and although he doesn’t know it yet, he will be changed forever.

What he is witnessing is painful, soul crushing, maddening, frustrating, frightening, confusing and the ultimate cruelty, but the only consolation is that it is not happening to him. He is not personally facing the life sentence his loved one is. But it’s bad enough to have to bear witness to.

On that moment I realized that at last someone I know can have some idea what it’s like behind the veil. Although I dearly wish they didn’t have to. Things are not easy behind here and once you truly look inside you are changed forever.

For many who have been through, or continue to go through, some of the hardest things in the world to endure (pain, loss, trauma, torture) there are few people who will ever be able to comprehend what we go through. They may have smaller pieces that they try to compare them to, but it’s not even close to the full picture that many of us see.

Often times autoimmunes go silent because we no longer share a reality or speak a language most of the world can recognize. Because the world doesn’t understand we are often looked down on, pushed away and mocked.

I recall the reaction of one family member who claimed they were embarrassed by my illnesses and life. As I heard this I felt a strong emotion of shame, but not on myself. I felt shame for the lack of empathy and kindness for the family member in question. Who they were and how they acted revealed such deeply rooted issues that I never truly saw before.

After the initial disappointment though I felt nothing.

It is a sad truth that people never really appreciate something until it happens to them. As I became increasingly aware of this I realized the only thing to do was to quietly retire from interactions and further disappointments. So I did.

Now as I talk to my old friend I do my best to reassure him, comfort him and remind him that this will be a marathon and not a sprint. He will have his own set of unique challenges and pain from his own position, and this will need to be supported too.

My husband too has his own pain and challenges that he carries and no one sees. No one calls him offering support or an ear. He is on his own in many ways.

No one gets out unscathed.

There is never a time in which real love is so keenly revealed as it is when there is a health crisis. Those that love deeply will stay, no matter what; despite every impulse to leave. Despite their limitations and heavy pain they stay… that’s what love does.

I don’t blame or harbor any ill will towards those that have gone. Their choices do not make my days any less busy or challenged. I have to keep going with or without them. Thus we must choose carefully those we take along with us on this journey. They have to make for an effective team or they are simply dead weight.

My friend will, in time, see many things come to pass. The fear. The depression. The loss. People coming and going. The drug trials. The frustration. It will run the gamut of emotions and experiences for him and his relative.

  • All I can do is be there when he needs me. And I will, because that’s what the autoimmune community can do for our own, and we should do be able to do it well!
  • Gentle hugs



    There seems to me to be so many misconceptions around the concept of hope and how it exists within each of is that it is only at this stage of my life that I have had the time and ability to truly consider and address them.

    The common belief that hope springs eternal is no longer one I adhere to. Not even close. It is one of the most

    I personally believe that hope is like any other human emotion in that it ebbs and flows inside us like the tides on the beach. The time between losing faith and then feeling its return again is individual and can be highly variable.

    Human beings were never meant to survive entirely on their own reserves of hope, faith, love and all the other resources needed to sustain life, that’s why we have relationships, friendships, interactions and companionship, they act as a lifeline when our own reserves are gone.

    I believe that the function of hope is to sustain us during times when we really don’t know what is going to happen and what we will have to deal with. It’s our inner most desires trying to drag us through the constant day to day grind and anchoring us in times of hardships. I truly don’t know what will become of my life and my body as the years progress but I hope there will be a use and purpose for me. I hope. I must surrender to the unknown while holding on to something…

    Many years ago, after my first heartbreak, I was convinced that I would never love again, furthermore, I became increasingly convinced that I could never love again. I felt depleted and spent and I remained that way for many years. Alive but in some ways empty. Until the day that I started to slowly but surely develop feelings for someone new, only this time my feelings were tempered with the experiences of past wounds, but nevertheless it grew to become love. However despite the many years since I had felt that depth of love it had not stopped me from feeling it once again, despite it being somehow changed and perhaps even deeper. Love still arrived despite my lack of hope.

    Over the past decade there have been many people who have remarked to me that they have marveled at my strength to survive amid difficult circumstances and during some of my hardest struggles, but the honest truth is that I have never seen strength in what I have done or what I have faced, in fact if I was completely honest I don’t see strength at all in myself. I simply did what I could do and what I knew how to do. I am completely and utterly human in all aspects of my personality.

    There are many more times over the past decade that I have lost all hope in myself and my life, but I have still lived on despite of this. When I have been at my most empty I simply floated upon my husband’s reserves and it is his hope that has had to feed us both. It is also worth noting that love, hope and belief are things that undergo great transition and transformation over a lifetime and are very much dependent on our experiences to forge it and shape it.

    To try to clarify this I offer the example of someone about to go to university/ college. At the beginning of such an endeavor their hope might be to graduate with honors and then to find a worthy vocation. At the end of many years their hope may become to simply graduate and finish their studies and take whatever position they can find. The ability to accept either outcome, or an alternative, is the stuff of survival but is independent of what they might be hoping for. In my own case my illness was to ultimately prevent me completing my final year of study and also take away any career aspirations I once had. Wasted years and effort? Is it more important than where I am now and what I have today? Is there really an ultimate answer?

    Hope may not be eternal but it can be renewed.

    People may think that my partner and I just have this magical relationship that has never faltered and has endured all things but that wasn’t always the case at all. As I sit here today I can honestly say that both of us have doubted and questioned whether we could survive as a couple.

    Many of our close friends and family had urged us to separate for various reasons over the years, both of us have contemplated whether we could go on in marriage. Yet here we are. Was it hope? In most break ups it always seems like one person has lost hope more than the other, which what can make them all the more painful.

    Hope ebbs and flows and it can change without knowing when and how, but that is also the fundamental nature of life and the human condition which few can truly appreciate.

    Ironically, as a younger person I had many hopes but today my hopes are much fewer but deeper. I hope that writing these pieces that some people will feel a connection. I hope some people will see things they may not have seen before. I hope that some people might understand a new different way of living. This is amongst some of the few hopes I cling to today, along with the constant hope that tomorrow I will be able to do a little more or rest a little easier than today.

    I hope.

    Gentle hugs,


    Should I?

    Note: I saw a documentary recently in which I marveled at the flora that somehow have endured in the most difficult of climates and have even managed to bloom and reproduce. It led me to the following piece…

    I was pondering a heavy question recently, which I have to admit that I still haven’t reached a comfortable position on but I have continued to wrestle with it regardless. The question, put very simply, is ‘should I be grateful to those who have stayed in touch since I have become this ill and incapacitated?’

    Admittedly there have been very few that have actually chosen to stay in touch, but at this stage of my life and health I feel I can now be less inclined to ponder their motives or question their decisions. I feel I am far more able to just accept their choice in a detached way. There is an old adage that says “it is what it is” and I find myself using this constantly in life now.

    For the few that have stayed in touch I prefer to think that they do so for the right reasons, which to me are because they enjoy talking to me, they have a deeper appreciation of who I am and they understand me on a broader level outside of my illnesses. Despite the fact that my illnesses now control a lot of physical abilities and choices, there is still another version of me that exists simultaneously and on another level.

    We coexist as best we can.

    One of the first things that illnesses and disability teaches you is how many things you took for granted. It is this painful truth that I now live with on a daily basis and I can never outrun. I took so much for granted previously that I find it hard to now witness these actions in others, so I stay silent as best I can.

    A person who bemoans driving to the shops can never comprehend the devastation of losing your ability to drive and the independence that comes with it. A person who complains of having to walk too far in the parking lot can never understand the agony of not being able to walk at all. It is a different perception and a different reality.

    For many of my former friends and loved ones I imagine I am the living representation of some of the things no one wants to ever be confronted with. So they look away. They go away. And I can understand it. I am sure I have done it myself in the past.

    Which then brings me to realization that for those that have stayed on, endured and persisted with me, I marvel at our new reality and the interactions we have! They are built differently than those I have ever had before and this is an amazing treasure.

    I will try to explain …

    years ago meetings and outings with a friend may include discussions of recent events, activities, achievements, goals sprinkled with a few deeper moments discussing feelings and emotions about things. A recent holiday can be dissected and retold over and over, as can a failed relationship or financial concern. They were often a way of pinpointing how you were in relation to your peers. Thankfully this has changed for me now.

    Today I get to speak with those that I keep bonds with on a range of topics and about the things that matter more deeply to us both. A find this far more rewarding. Perhaps because there is an unspoken understanding that we must make the most of our time interacting before pain and fatigue overtake us?

    Those that have stuck by know that there is no need for pretense and feel that they can let down their guard around me and speak openly and honestly on a range of topics. It seems as though they recognize that I have wrestled with many demons and so they feel less inclined for hiding anything or concealing emotions, knowing there is now a depth and strength to the human condition.

    After all this time being unwell and declining has weeded out those who are far more superficial or only interested in what I might be able to do for them. Of this I am truly grateful.

    I have always marveled at how my husband transitioned into my illness better than I did. He once said that what he gets from me is far more relatable and understanding than when I was more physical and able bodied. He sees me with the facade of my external self stripped away. I hope that is what my current friends treasure too.

    Reliving old times is all very well and enjoyable but the reality is we just can’t live there. We are not those people anymore and unable to go back. What I desire more than anything from my current special circle is that we are able to accept and work within the new reality and this version of me in a way that is respectful, treasured, rewarding and healthy. I don’t want pity, duty, false praise or obligation. I only make room now for honest and sincere interaction and acceptance and appreciation of the now… After all, that’s all we really do have.

    I am glad of all those people who were present at each iteration of myself, but I especially treasure those that are here for this version and who hold on because of the love and happiness we share today.

    Gentle hugs,


    What I Have Learned From A Bed

    As much as I still hate it, the fact is that my health has confined me to my bed more often than I could ever have imagined. Even after all these years I am still the worlds worst at being confined to a bedroom, and I am not proud to admit that I do not make it easy on myself or my partner. It is my sincere hope that I will become better or make a peace with it eventually.

    Being confined to a bed is not the cozy, peaceful, fun, lazy or self indulgent image that many healthier people like to imagine. Far from it. I suspect that it is what they imagine because that is what they know. I only wish that it was how bed confinement was. Truly. But it’s not at all like that for me.

    When I find myself confined to the bed and surrounded by the four walls of my bedroom it doesn’t take long for my spirits to drop and my emotions to become unstable. Pure frustration is added to the pain and suffering I am already going through. It makes for a truly difficult time for me and my partner.

    When I find myself confined to a bed I tend to do two things a lot; suffering and thinking. When I am not struggling with the pain of the circumstances I will spend a lot of time in deep thought. This has proven to be my greatest achievement and my darkest demon.

    I can spend far too much time thinking backwards and remembering things I once could do and things that I wish I could still do now. It’s the worst torture imaginable! I have learned that it is best to distract myself when I feel myself sliding too deeply into the ‘what was‘ or it will only hurt me emotionally; but it is so easy to do!

    Recently I remembered myself back in my career and the countless hours I had spent doing planning, meetings and managing, all from my confines of my desk. I worked very long hours and, more often than not, I would work 7 days a week. I can remember I rarely had time for entertainment and relaxation because of the workload and my responsibilities at the time. This got me thinking about my current circumstances and doing some deeper soul searching.

    I have recently been training myself to see these current times as being more like my new job and my new working environment. Instead of spending many hours at a desk and computer in the middle of the city I am now shackled to my bed and room working every bit as hard, if not harder! This has become my current workspace. Every day that I would spend at my desk I endeavored to make the most of my time and the best use of my skills. That was my focus then and it is still my focus now. This is what I try to do everyday with every little bit of my strength and ability.

    In this sense I have always asked myself what things can I do and how can I make the most of my time, and ultimately my life. When I am crippled in pain or fighting some other debilitating symptoms I am invariably thinking and planning what I can do next. I am writing my blog in my mind or planning the next grocery list or project. I am even be scheduling visits to the vet or listing all the things that need to be done around the home.

    As well as planning I am also problem solving issues or difficulties that my partner and I may be facing in our lives and with the outside world. The problem solving and creating that I once did for other companies I now do for us from my home office. My bed.

    When physically able to I will fold washing, iron, peal vegetables, order groceries online, design home renovations, write business plans and develop ideas and suggestions which could make our lives better, more secure or more livable.

    I have never believed that it has never stopped being my job to contribute in any way I can.

    When I look at my time spent in bed as being doing my job to aid my body, and yet still do whatever I can to aid our lives, I feel less distressed when I have to face days, weeks or months without being able to leave my room. In fact it’s the only way I can bear it!

    From the confines of this bed I have managed to do, and to organize, things that I could never have dreamed possible and to achieve things that have even surprised myself. In fact even bedridden I am working harder than I ever worked before. It’s an endless job with never ending challenges and I can never know when I will ever get a break. Ever.

    If I am not writhing in pain and doing what I can to help this struggling body I am doing all I can to help my family, my relationship, my loved ones, my friends, my autoimmune community and myself.

    I know many people will never truly understand what I have described, and it is not easy to explain to people in general, but living outside the norm is never an easy thing to do and many struggle to do so.

    My job is not an easy one, it’s the hardest thing there is in the world to do, but I have always tried to do the best job I can every day.

    Gentle hugs,


    Below The Surface

    A common misnomer is that chronically ill people lead boring, easy, relaxed, idle and dull lives. I guess to the untrained and uninitiated it will certainly be a life beyond their comprehension but it is never idle.

    It may seem dull that we no longer do many of the fun things that able bodied people can do, or as often, but it doesn’t mean that all of life’s inspirations, emotions, struggles and complexities magically disappear from us. The reality is that we now have to find different ways to do what everyone else takes for granted.

    To give this a little more context I will use my own journey as an example. Over a decade ago things became increasingly difficult health wise and seemingly overnight I found myself blind in one eye, weak, numb, unable to move, balance gone and suffering excruciating joint pain, however I was still a project manager for a multinational I.T. Company and I had many daily tasks to perform. I simply had to try and manage them as best I could and from the confines of my bed and I endeavored to do this for as long as I physically could.

    Each morning began at 6 am with preparations, status updates and then on to calls all over the world and meetings with staff and customers.

    For years I oversaw international projects and roll outs from my home base and since my husband and I were strangers to the city we were now living in, we had to do everything on our own. Cooking, cleaning, shopping, working, caring for our family, and everything else in between, these things still had to be done. There was never a dull moment and still hasn’t been to this very day!

    As the years have passed by there has never been a day in which I (or my husband) have idly sat by and squandered the hours away. The reality is that somehow you have to make room for everything whilst still suffering and struggling.

    Sadly this means it has been many many years since either of us have been on holiday and the opportunities to frolic and laze are few and far between. Despite what impression that people have of the chronically ill or disabled the reality is for people like us that we never have days off. Ever.

    We are always working hard at coping, surviving, maintaining and trying to make the most out of every moment of our lives.

    I often find myself unable to, and unwilling to, go into details of how we carry out our lives because it always seems that to most people (even those who should know better) it is beyond their experiences and comprehension.

    I have rarely explained the daily challenges and routines we face, or how they can often become even more painful or complicated in an instant, because it is very rarely truly understood. This has always caused us a great deal of communication obstacles with the outside world and is precisely why we don’t really tell anyone what we have faced together over the years. It can feel like trying to explain Greek philosophy to a newborn giraffe.

    I don’t bother detailing how we have tried to order and stabilize our lives and yet somehow still managed to renovate our home, build charities, start businesses and care for rescued animals… all whilst facing excruciating daily pain and hurdles. Sometimes I don’t even understand how we have managed so far!

    But these are the types of reality that many autoimmune sufferers face all day everyday and very few people have any idea of what it is like, and many more don’t want to know.

    There are so many individuals and families out there who are struggling with these diseases and have somehow still managing circumstances that would boggle the mind of the most skilled and talented entrepreneur!

    My husband and I have amazed even ourselves when we look back and realize the skills that we have had to acquire, the strength that we have had to find, the perseverance we have clung to, the patience we have exercised, the determination we cultivated and the love we continue to show in our daily battles. I could never have imagined such things were ever possible and achievable by two individuals. Yet hundreds of millions of people around the world have had to find a way, we don’t have a choice.

    Today was a real moment of reflection as I have looked back on all that my husband and I have faced and accomplished and I am truly lost for words. We have worked so hard to continue our daily lives and create a strong future for ourselves without anyone ever really knowing all that we have done and all we continue to do.

    From the outside it may indeed look like we have boring, house bound lives that most people may consider dull and uninteresting but just like someone standing on a beach and looking out to sea, they can never truly comprehend all that lies beneath the surface of these mighty oceans and all the mysterious that lie within.

    One thing for sure though, it is never dull!

    Gentle hugs,