Guest Work

Another painful part about this life is the difficulty trying to resolve entertaining people at home and yet struggling to do so; especially those wonderful people I would like to see and be around.

Over the past decade the number of visitors and guests we have had in our home have declined considerably such that it is rare to see anyone come to our home aside from the postman and door to door advertisers.

It is hard to explain to people, especially people that you love, that most days it is a real struggle to even move let alone entertain friends and loved ones. I often don’t want to be seen at my worst because of the embarrassment I feel about many of the physical issues I live with. I know I shouldn’t and that only makes me feel worse because I do.

It would be wonderful if people who visited me were instantly comfortable enough that they could fix themselves a drink, lounge around beside me, and look after themselves whilst we spent some precious time together but it is highly unlikely that people will do this, and I don’t blame them at all. However I often don’t have the strength or ability to fetch refreshments, keep conversations lively and stimulating, and entertain people as I would dearly like to.

The truth is that with these illnesses you either have a small group of amazing people who will make themselves at home and become in tune to your physical abilities or you live a life of isolation and loneliness.

Today I have a handful of people whom I can rely upon to feel completely at ease and have this amazing ability to gauge “the room” and know exactly when to chat at length or cut short their visit and let me rest. They are not shocked by tremors, tears, aches, blindness, facial droop, slurred speech, fatigue or general malaise. They don’t care if I am in my best dress or in my pyjamas. They don’t care if I talk a little or if I just listen. And they don’t care if we are sitting in the garden or holding hands while I lay in my bed.

Those few people are just pure gold to me.

There is no handbook whereby people can learn how to visit with an autoimmune friend and so I never blame people for feeling awkward and opting out of visiting altogether. I think it’s often best to not visit if you are not really committed to understanding their situation a little better. For the purposes of helping both parties I thought I might write down a few handy tips and suggestions.

1. Call first. This is essential. There is no point in dropping in on a chronically ill friend/loved one unless you both want to be disappointed. Call first and be comfortable with a “sorry, not now” response. Better still, text the person so they don’t have to speak if they are not up to talking or if they feel awkward about saying no. The truth is that your chronically ill friend really does miss you and it hurts them to have to say no, I guarantee it!

2. Intend on keeping your visit short unless your friend can manage more time with you. It is very hard for healthy people to understand that speaking, listening, concentrating and participating uses a lot of energy and this is something that most chronically ill people have very little of. Almost none. After half an hour of Interacting it can start to take a real toll on the person and pain and fatigue can start to overrun them.

3. Be comfortable at making yourself at home. Often it is beyond the abilities of the ill person to fetch and carry drinks, snacks and showing people around, therefore it is so important to just try to make yourself at home as much as possible and be self catering. Your sick friend will be immensely appreciative; more than you can ever know.

4. Don’t feel as though you need to talk about illness or anything health related. We live all our lives with these challenges and struggles and for a short time we would like a break from discussing them. A polite “how are you feeling today?” Is sufficient and a good way to gauge the time you may have together. I for one hate retelling my health struggle over and over so I much prefer to just not think about it for awhile and just hear all about another persons reality and news. That’s my personal preference anyway.

4. Don’t make future plans with the person as often times they can become things that can break the persons heart if health is not going their way on the day. I can’t tell you how many times I cried from breaking plans with somebody and then took months to get over the pain of it. Such things can trigger depression and feelings of inadequacy in a second. Simply say something like … “it would be nice to go to the movies one day when you are up to it,” … this is more likely to make the person feel included and valued.

5. Check in regularly to see if the person is coping during the visit. A quick “are you feeling tired?” Is the best way to gauge how your visit is going. If your friend says “yes, I do feel tired now” don’t take this personally or consider it a rejection. Half an hour with you is probably a treasure that your friend will not forget in the days (months) to come and you may even be what keeps them going through the most painful times in their struggle. It may be just a visit to you but it can mean the world to them.

6. Learn to be completely honest with your ill friend. Speak honestly and openly about your friendship, your challenges, your lack of understanding, your life, anything. Openness is the tool that will ultimately help you navigate these times. Illnesses which change a persons life forever are not for the faint hearted and take a lot of courage and honesty to get through. I have found that I must always be honest and I can no longer tippy toe around subjects or issues anymore. I simply don’t have the strength or energy. This can either solidify a friendship or break it depending on the bonds you share and only time will tell you both which way it will go. I, personally, have lost a lot of friendships and relationships that I thought were stronger and deeper but I have learned over time to simply let it go and try to find peace at each stage.

7. Try to find the value in your chronically ill friends other abilities other than their physical ones. Constantly needing your friend to be physical, do things for you, go places, and measuring them against a physical standard is a painful and cruel thing to do to someone with disability and struggles. It is kinder to simply let the relationship dissolve than to require things they can not give anymore. As a society we tend to overlook the other aspects of a person outside of their physical abilities or attributes and illness hold a microscope to this very quickly. Friendships with the chronically ill must be based on deeper things like personality, empathy, feelings and appreciation beyond what they can or can not do.

8. Remember that a visit with a friend can mean they will need days to recover. Every little action and interaction has a physical toll. Every action. Every day. If your chronically ill friend or loved one is prepared to hurt, suffer or struggle just so they can spend time with you please, please, please see this as the great honour and act of love that it is. You simply can not put a price on this kind of gesture. It is worth more than a hundred visits with healthier friends.

9. There is nothing better than laying in bed with a friend and watching a movie or documentary with someone when you are chronically ill. If this is your idea of heaven too then make friends with an autoimmune fighter and you will have a friend for life.

10. Even if you don’t see your friend very much anymore always remember that they are missing you as much as you are missing them too. Sometimes more.

I hope these simple suggestions will be helpful the next time you have a chance to visit with your chronically ill friend and I wish someone had told my friends and loved ones these things over the past decade or more.

It is hard to have your friendships and relationships change when you have a chronic illness and it is always very hard losing friends but it is worth more than words can say to have the right kind of friendships that will last through all the ups and downs and make the struggle a little easier.

Gentle hugs,


Reaching Out

As a child in the 70s, and born into a rural family, I was raised to believe that if you were feeling sad or upset due then you needed to go off alone and ‘deal with it’. My parents would either ignore me or quarantine me until I was able to act in a way that they approved of and made them feel comfortable; with minimal disruption to their lives.

I was also taught that I had to deal with my own problems and concerns and not to ‘bother‘ other people. Visibly showing pain, worry, sadness or any emotion was not acceptable and seen as a sign of weakness therefore I had to do such things behind closed doors.

For those who share a similar upbringing as mine we would tend to grow up and internalize all the pain and stressors in life because we are taught that ‘sharing‘ or asking for support is weak, inappropriate and a sign of failure.

It is little wonder that so many of my generation can drown in stress and depression, and as adults we have struggled to ever share our burdens or ask for help, even from those closest to us.

Men were quite susceptible to these difficulties as society has long told males that it is unmanly to seek help or to confide in others. This has caused so many difficulties with intimacy and relationships that many just do not survive this hurdle.

However, it has been my long held belief that when we are struggling, or when we have pain and emotions which are hard to deal with, that is exactly the time that our loved ones need to be present in our lives and by our sides. We need to know that support is there when we need it most and it is not going to walk away or dessert us.

No child should ever have to feel alone in pain or should ever feel that their struggles are a sign of weakness or failure. Those children grow up to be struggling adults with a string of broken or superficial relationships in their wake.

As an adult I have been in far too many relationships where one or both of us struggled to reach out and be a support to the other during hard times, and this was a major factor in the ultimate demise of those relationships.

Speaking for myself I just didn’t have the experience and practice of speaking out and sharing early on in life. I had been taught to build walls and barriers to my pain and emotions and I learned not to trust anyone or rely on anyone.

The message that I was not good enough to help or to support became the backdrop of my relationships and helped me choose partners that were not worthy of me.

If we can’t trust our family with our emotional support when we are growing up then who can we trust? If we can’t rely on our primary care givers as children then who can we rely on as adults?

Having our emotional needs shunned at an early age can also lead to fear of rejection and depression later in life. These are very dangerous burdens to carry around through life.

Many of my generation still struggle with these deep seated issues and it is a very hard road to travel in your adult life, and even harder to try and correct.

But it can be done.

The relationship I have now, despite the fact that I have health challenges, has been tested and I have forced myself to open up and talk about my struggles. I required my partner to do the same so that we were prepared to take the same risks and be the same refuge/shelter for each other… despite being incredibly hard it has also turned out to be incredibly rewarding.

Taking these emotional risks has enabled us to take strides forward and also helps us navigate the difficulties that life constantly throws our way. A true partnership.

It seems strange to me now that this is what I have always looked for but I didn’t realize how truly life changing it could be. I have often said that I never needed a perfect partner/ spouse in life but I did need someone I could open up to and share anything with, and they have that from me in return.

Reaching out is the hardest thing I have ever had to learn how to do and it is far harder than living with these diseases I have but I believe it is probably the most important thing I may ever do in my life.

Gentle hugs,


Where Are They Now?

Where Are They Now?

One of the hardest realities to come to terms with as a chronically ill person is the decline and disappearance of people from your life, especially those whom you may have been there for and helped in the past with love, support and money.

I discussed this with a friend just recently in a very sincere and meaningful way in order to try and make sense of it all.

Being an empathic person has always predisposed me to wanting to help others whenever and however I can. Whether they were friends, family or strangers, I always wanted to make a positive difference in some way. Perhaps I didn’t always choose the right way of helping, and I am certainly not suggesting that I am some sort of saint either. However I do believe that I have endeavored to be a kind and generous person in the course of my lifetime.

I also believe that my kindness and generosity developed from out of my own challenges and struggles and my understanding of what it is like to endure difficulties on my own. Kindness can be such a rare commodity when you are going through hard times of your own. Thus I began to want to be one of those people that offered a safe place during the storms of life.

It didn’t always go so well despite my best intentions.

Regardless though I found myself somehow finding my feet again after a difficult encounter or being taken advantage of, determined to believe that there would be some people that would prove their worthiness one day and justify my hopes and efforts.

I don’t believe I ever did anything with the expectation of being owed some kind of debt by the person. I didn’t want money or praise in return. I only hoped that my selfless acts might one day lead to good karma and the sense that I lived a good life and helped my fellow man in times of need. I hoped that it would somehow contribute to the overall betterment of the world and society.

I have to admit that I feel quite disappointed and disillusioned today.

As I look back and remember the many times I have given my time, heart, feelings, money, efforts, assistance and strength to many of the people in my life I am forced to ask myself the hardest question of all … where are they now?

The simple truth is that they are not in my life now and they don’t bother to check in or be a shoulder for me in my own times of need… There isn’t even the occasional greeting or casual enquiry from any of them.

Did my efforts mean so little in the grand scheme of things? It really does seem so.

As I look over the things of the past I am determined to learn from these experiences and that is the only reason I think of them now. I don’t intend to become older and bitter by these experiences but I do hope to become wiser and, hopefully, more at peace.

As I spoke to my friend she agreed emphatically with much of what I had said and had had some similar experiences of her own.

This actually made me feel even more disappointed.

I said to my friend that I didn’t see myself as having a finite amount of love, kindness, care and empathy or that I was ultimately going to run out of these resources; despite having given so much of these things away in the past. I knew on a very real level that their actions would not rob me of these things from my life entirely. Even the large amounts of money that I had given in the past did not mean that I was waiting for a reimbursement or Cheque to appear magically in the mail.

Money had always seemed to me like such a transient and unstable commodity during a lifetime anyway because we can never tell what is waiting just around the corner. It is also true that money can’t buy you the type of things we truly need in life like love, respect and acceptance.

I shared with her the times that my acts of charity and setting up charitable groups had even resulted in ridicule and betrayal. Not at all the outcome I could have ever imagined!

So what was to be learned and what should I take away from all of this? …because to me learning and wisdom are the most important outcomes of all.

I have to admit that today I have become far more introverted than ever and have withdrawn myself to a great extent. I am even more self reliant than I ever was and I am determined to not go through the pain and disappointments of the past. Although I am comfortable with the concept that life is struggle and that this truly is the underlying message of the human experience, but I also believe that we owe it to ourselves to not make the struggles even harder for ourselves so we must endeavor to learn the lessons as we travel through our lives.

Today I find that I have had to build higher boundaries around my precious and loving resources. My husband has been a grounding and guiding force in my life and has shown me how to stem my generous impulses, which in itself is an inner battle to override my own nature. I rely on him as a sounding board for so many of my decisions now as he has had to be there so many times in the past to help pick up the painful pieces and heal the emotional scars.

One of the largest breakthroughs that I made in comprehending all of these lessons is when I realized that not everyone has the heart, feelings, depth, kindness or spirit as I do and therefore to assume that they will treasure or appreciate the things I do is an incredibly large mistake and illogical and incredibly naive on my part.

Assuming that people are as loyal and loving as me may even be narcissistic in some way? … I don’t know.

Alternatively I have had to learn how to love myself and use that generosity and kindness on myself in positive ways and protect myself far more.

Learning how to do that at this stage of my life, whilst battling some of the most painful and frightening physical challenges, has been incredibly difficult and there are many days I wonder if I can ever really do it. Whenever I find myself asking if I can actually achieve this goal I am also reminded that I simply have no choice.

At this point on my life I have come to realize that there are a staggering amount of things in life that we have absolutely no choice over, despite all the positivist slogans out there insisting that we are in control of everything. Learning how to live more peaceful seems to be one of the things that we do have some choices and control over.

My aim from here on is not to carry around sadness, hurt, confusion and pain for all those who have disappointed me and disrespected what I have done, but rather the goal now is to let go of all of that baggage, release the confusion, lean into recognizing the depth I have and the soul I possess (despite it all), being proud of all that I have endured and, finally, being inspired to learn from the past.

I am truly, deeply and forever grateful for those handful of people who are in my life now and who continue to stand by me, no matter what. Those that have lost me or walked away could never truly have really valued me in the first place, and therefore I see myself as ultimately far better off.

Gentle hugs,


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,


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,