Chronic Burnout

I believe that at some point in your fight for life with chronic illness you will encounter feelings of “burn out” where everything feels heavy, futile, exhausting and you have had enough. No matter how positive you have been, and try to be, the fact is that you can’t sustain constant enthusiasm and optimism indefinitely.

And you shouldn’t have to.

For nearly a decade I was filled with positivity, dedication, optimism and I wanted to spread hope and advocate for all those who shared my struggles. I set about making changes and raising awareness with stoic determination until the constant battles with illnesses and people started to slowly erode me.

My idealistic bubble began to burst with the harsh realities of life. My efforts began to feel futile and I felt that fellow sufferers either appreciated my efforts, were indifferent of my efforts, were critical of my efforts or even attacked my efforts. Nothing went the way I had imagined it.

Healthier people would sometimes welcome the insights I was offering but generally they ignore or feel indifferent (even annoyed) by my efforts. The backlash has been quieter and concealed but strongly felt nonetheless; like running into a brick wall.

Political correctness might have made some impact in quieting people’s public voices but it has not changed their thinking or emotions towards chronic sufferers or Autoimmune warriors. We are still regarded with suspicion and as attention seekers by the majority of healthier people.

It’s easy to give up hope.

I have left a lot of autoimmune support groups, even those that I was instrumental at building, due to my declining health and feelings of futility and disillusionment. The same worried questions and painful feelings keep coming up time and time again from within the support groups which only feeds the feelings of helplessness and frustration.

It all feels so overwhelming and unfair.

The hopes that I once had of fighting for justice and changing the world for those of us with these debilitating diseases and physical challenges have all but vanished. It feels as though I have been very naive and foolish and have had to face the harsh realities of life and the world.

I can now see that this world is willing to embrace and accept the plight of childhood illnesses and those with cancer and critical care needs but has very little empathy or compassion for those with long term or chronic illnesses, despite the global trend towards chronic diseases and illnesses.

I still don’t really understand why.

I have come to see these feelings and this phase of my life as “burnout” from battling constant pain, endless symptoms and struggles that I have emotionally “resigned” myself to a place of quiet acceptance and retreat. I want to avoid deeper and more painful feelings of hopelessness by “looking away” and retreating further and further into myself.

I feel silenced yet pleasantly numb at this point and use all my willpower and strength to ignore a lot of what goes on inside me now. Yet even this can be incredibly taxing. I have decided to only consult with my specialists in life or death circumstances as all my efforts and trials of medications have not been able to stop my steady decline over the years. Although many doctors would label me a “bad” patient the reality is that I am simply a “tired” patient.

I know on a very real level that all of these feelings are normal and valid for someone who has fought pain and disability for a decade now and I am sure I am not the only one. I see my husband and carer looking and feeling very similar as me. Long and sleepless nights have taken their toll on him too. Seemingly overnight he and I have aged dramatically and in desperate need of relief and levity.

I can’t help but feel responsible for the impact I have made on my husband’s life and health but he has always assured me that his love has only deepened over the years, and for that I am truly grateful. He is the only man I have ever known that has given more than he has taken and with a great capacity for love and devotion.

I have certainly gathered a lot of emotions, learning, maturity, empathy, understanding and wisdom over these past years that I am doing my best to now put into some order and utilize as best as I can and I feel as though this is all I can do, and will do, for now. I have decided to still write and document all this in my blog for my own benefit as well as a sincere wish that it may help someone else going through the similar experiences as me.

Like a forest which has been devastated and decimated by a fire I must now regrow, renew and rebuild what little I have left and hope that I can return to a stronger place again. What that can and will look like will be a matter of time but I will do my best and in the end that all we can ever do…

Gentle hugs,

Trish

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,

Trish

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,

Trish.

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,

Trish

How Does That Make You Feel?

How Does That Make You Feel?

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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,

Trish

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.

Until.

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

    Trish