Self Manage 


At some point in my health journey I have reached a place where I no longer want to go to doctors and trial new drugs. I have become tired of the revolving door and no real advancements. The painful merry-go-round. 

Its heartbreaking and tedious! 

And although I possibly should see a doctor when flares happen or my conditions changes, or worsens, I don’t! 

I call it self managing while others may wish to call it something else. Either way I feel I am no better off no matter which way I go. 

I have several drugs at my disposal that I increase or decrease myself and I have become my own caretaker.  I have been to enough rodeos with these diseases that I know how they go… I know what the falls and kicks are like. Nothing frightens me anymore! 

I have told my husband that if I was on my last gasp I would rather take my last breath as a free woman than tied to a hospital bed and alone. That’s how I truly feel now and I hope that he would respect my wishes. In the meantime I will live and suffer all I can. Alone. That’s my choice. 

This may be quite contradictory to many of my fellow fighters and I do not offer this as medical advice, but I believe we reach a point where we must decide for ourselves how we wish to proceed. 

Apart from my blog, I rarely share my reality and my thoughts about my autoimmune battles anymore. This is the last vestige of my journey. Only my husband and I may ever really know what it’s like. 

I know that many have tired of my sharing so I have decided not to anymore. 

My current mind set is that after many years of doctors, tests, meds, trials, tears and anguish I have had my share of opinions, trials and errors, so I would rather take what’s coming on my own terms. It has not been an overnight decision!

Only someone who has knowledge of these challenges may ever really understand some of the obstacles I have faced, while others will simply wish to ignore and turn their backs. It no longer matters to me which camp people belong to. I don’t judge. 

There is a freedom in that too! 

I think the difficulty in trying to be an advocate is becoming tired and burnt out from trying to make a difference and facing a wall of indifference. I suspect I may have hit that wall. Hard. 

Even the greatest and strongest walls will crumble in time. 

As a project manager I spent enough of my career trouble shooting and trying to solve issues but I never imagined that I would be my last project! The longest and hardest project of my life!! … and I have had some nightmare projects, trust me. 

So I Self Manage now. I do my best. I manage the moments and I surrender to whatever awaits me and I hope that I will have enough to face it everyday. 

Gentle hugs, 

Trish. 

Finding Happy


Finding the chance and ability to be happy and joyful when faced with terrible pain and challenges is so hard. Sometimes I feel as though it is almost impossible. 

I won’t pretend that I am an expert or that I find it any easier than anyone else. I feel particularly disappointed in myself when I remember how light hearted and happy I once was. I was always laughing and joking, nothing could stop me … But that was when my life was a lot lighter and far less difficult! 

It feels like that person was taken away from me and replaced with constant pain and challenges. It feels so unfair at times. Like a crime was committed, a murder or something violent, but it doesn’t count, not in this world anyway. 

It isn’t easy to go from one time being a presence, a functioning being, leading teams from all over the world and thriving on energy and excitement to being unable to use the bathroom on your own or struggle to swallow. It’s souls destroying! 

I think a lot of my grief is for the old me that I want back and I fear what will become of this new me… I fear a lot of things now. 

I fear the pain of each new hour. I fear what the next day may bring. I fear progressing further. I fear becoming nothing more than a body on a bed. I fear my darling furries being taken from me if I couldn’t care for them alone. I fear being alone and having to try and take care of myself. I fear having to have a stranger in charge of my care and my body. I fear being institionized. I fear this life I have, this one life I have being pointless and wasted. I fear that most of all. 

Trying to find happy amidst all this is not easy. But I am faced with having no choice. This is what I have to work with. 

Happy can no longer be going out all night dancing. It can no longer mean drinking all night. It can no longer mean holidays to exotic locations and throwing caution to the wind. It can no longer mean whole days spent making love and intimacy. 

Happy has to be something as simple as looking at a garden in full bloom. Enjoying a moment of sunshine on my face. Watching the furries wrestle and play. Listening to my favourite concerto. Seeing a friend reach a milestone in their lives. Knowing my loved ones will be ok. 

Happy has become less of an emotion or physical experience or expression and more of a knowledge of something. A deeper knowledge and acceptance of something… I hope one day that I will learn how to make that be enough

Gentle hugs,

Trish. 

Chronic Behaviours 


It has become very clear to me that just because someone is chronically ill they don’t stop being human, and we still have all the human flaws and weaknesses that anyone else has in life. 

There is still a lot of difficult behaviors out there in the chronic world and you may even encounter them from time to time; for example… 

The chronic clique 

There are so many small support groups out there for the various illnesses and diseases that there begins to develop cliques which can often feel unwelcoming to strangers and exclusionary. Even those groups who share similar challenges and struggles. 

These cliques, once formed, can be impenetrable and can isolate people who are already struggling with feelings of rejection and isolation. 

Beware of the Chronic Cliques! 

Chronic Competitiveness 

This describes a person who views their illness or disease as a competiton and other chronics as potential competitors. They must always be sicker, have more pain, be on more medications or be in a worse position than all their peers. 

Even if they are genuinely in difficult positions and struggling, this behavior only achieves distance and helps to push others away. 

We may be competitive people by nature and it may have even helped us in our careers or sporting pursuits but does it have a place within chronic issues? Does it help those who are struggling and suffering? I don’t believe so. 

No matter how difficult or effected your life has become it is better to try not to turn it into a competition with other chronic fighters. We are all doing our best after all. 

I have seen some shocking online fights and shaming posts which does not reflect well on those people concerned or the entire chronic community. I always try to think the best of people and remember that they may have some other mental health issues as well as pain and discomfort, but there is never a good reason to expose the entire world to nasty or belittling comments. 

Chronic Overachieving 

We have all seen the pictures and heard the stories from the chronic overachiever. You know the ones that have climbed mountains, swam oceans, single handedly saved a small country, looks like a super model and should be on the cover of Time magazine as the “most accomplished chronic sufferer. Ever”

You can’t help but see these people and feel both happy for them and then completely wretched about yourself! 

… It can make others feel like they are failing at being chronically ill. 

I don’t believe that this is helpful to the overall community of it is deliberately flaunted or used in a negative way. Our achievements are special and mean a lot to us personally, but to strangers who don’t know our intentions it can feel very isolating and demoralizing. 

Perhaps when we interact with our chronic brothers and sisters we could be mindful of how they may interpret and feel when they are struggling? Do we need to remind the world of how accomplished we are all the time? Especially when others are having a difficult time? 

Chronic Incompatibility 

Just because you happen to have the same illness or similar diseases as someone else it still doesn’t mean you are well matched or destined to be BFFs. 

In life some people are just not meant to be friends or to bond. In fact, some people can even take a disliking to each other. It’s normal, it’s human and it isn’t anything to punish ourselves about. You just aren’t compatible. As in any other social situation it is best to be cordial and move on. 

We aren’t required to please everyone or be everyone’s friend, even if we are hoping to make some real connections. It is much easier to try to be respectful to others and enjoy those who you may find a deeper connection with. 

Even online it takes time to get to know someone and even longer to become close. There is no getting around this rule. However the loss of an online friend can still sting and hurt as much as a real friendship so try and be wise with your loyalty and feelings. It still takes time. 

Sometimes we try hard to make a lot of chronic friends quickly because we have lost so many healthier friends* (*able bodied friends) but friendships doesn’t always work like that. People are still people, health or not, and it is better to have a much smaller group of quality connections than cling to difficult and taxing ones. 

Chronic Misconceptions

Often we will meet chronic friends online since many of us are unable to physically interact with the world anymore. An important thing that I have learned to remember is that even though you may share a painful illness and have shared deeply personal and painful discussions with the group, the fact remains that they don’t really know you. That takes years and years. I am still discovering friendships I have had for over 30 years! 

You may share pictures, personal anecdotes and emotions but they still won’t know who you are when you turn your computer off or how your life really is. 

Therefore I advise caution when overinvesting in what an online person says or how they act towards you. Enjoy the connection for what it is. For what it truly is. 

They may also be depressed, they may have other issues that you are not aware of or other factors in their lives driving their feelings and actions. Things that you can’t know or may never know so we can’t always take things personally… other chronics are always experiencing  their own realities. 

As a blogger people may assume they know me or who I am based on something I have written, or they may even misinterpret my actions or words but that doesn’t mean they have the true and complete story of me. We are all deep and complex human beings. The only one who can ever truly know us is ourselves. 

Chronic Overuse 

This is a suggestion about putting too much time and investing too much of your life into any one chronic group or online community. Sometimes they can take too much energy and time that could be better used in other aspects of your physical and emotional wellbeing. For example, meditation, contemplation and relaxation.  

If you feel compelled or required to be engaged with groups and activities to the exclusion of everything else in life than perhaps it has become not as healthy or useful to your life. 

We are now a world of social media addiction and when you are bedridden and vulnerable we may tend to rely too heavily on social media to the exclusion of all other things. Music and reading and time spent alone is still as healthy as  viewing every post or picture that drifts across social media. We have other forms of validation available to us that should not be forgotten. 

When liking someone’s post becomes more important than liking yourself and your reality than perhaps we should reexamine our priorities. 

Gentle hugs, 

Trish. 

Mirror Mirror On The Wall


Mirror, mirror on the wall… why am I never happy with you at all? 

I wish I could take credit for all of this post but it took a friend to help me open my eyes wider and start opening up. Eyes that had been closed for so long. So very, very long. She has my thanks for the push but I know the hard work will have to be mine. 

I read a post today from a friend who had posted about how she felt about herself since she had become ill. Her body has changed and she wasn’t as happy with her looks anymore. What a brave soul she is! … So many of us think and feel it but few of us admit to it. Not publicly anyway. 

When illness steps in and takes over we will fight so hard to keep control. We don’t want everything stripped away and we feel so deeply hurt when we can’t stop everything that is happening to us. Especially the way we look and feel about ourselves. 

As I read her post I was immediately feeling for her and me at the same time. You could replace her words with my own. I admit that I dont really know all her story, but I do know mine. 

Even from a young age I was taught to never be happy with how I looked. I learned to shy from cameras and accept that I would never be thought of as attractive. So … to this day I have very few pictures of the first 30 years of my life! I can count all of them on one hand!! … Even including baby pictures. 

I was always told that I was too plain, too fat, too shy, too (insert adjective) … and therefore I had a very poor self esteem and body image. The only things I felt I had going for me was a good brain and a good sense of humour, so I clung to them to get me through my life. They have been my pillars. 

As I always enjoyed using my mind a lot, my studies and my work were filling a huge part of my life and I was pleasantly distracted with these pursuits to the point that my looks no longer occupied my thoughts, and my relationships were never really based on my physical appearance anyway; they tended to be more a connection of the mind and emotions, which is arguably a better basis anyway. 

However, I did all the usual things that women my age and generation are encouraged to do… exercise, do fad diets, change my hair, buy new clothes, and all the other usual things that women do to feel attractive, validated and appealing; but I always felt that it was never going to make me feel or look any better. 

In the decade leading up to what would be my health crash I was really enjoying myself and felt the most confident I had ever been with the direction of where my career and experiences were taking me. I left a lot of the people who made me feel my most unattractive behind me and I realized that there was a whole world out there! A world of different people and different experiences … and then the crash. 

Sadly, along with the crash in my health and abilities I rediscovered new negative feelings about my body… betrayal! It is heartbreaking. 

My body no longer moved the way I need it to. Feel the way I expected it to and so many things started to unravel that I can barely know where to begin describing it all. 

My weight yoyoed from putting on weight with medications and physical inability to losing weight from being unable to eat or digest foods. It’s painful and unpredictable. 

My skin has changed from the dryness of sjogrens and the bruises of steroids. My joints are becoming visibly changed and my eyes are sore and constantly painful. I am pale from the painful results of chemotherapies and unable to handle sunlight. My hair is brittle, dry and thinner. The damage to my nerves causes all sorts of issues that I wouldn’t wish upon another living soul, let alone someone who struggles with body image! 

I don’t see the person I thought I knew when I look in the mirror. I am aging but I mostly feel the years are being robbed from me! 

I force myself to take selfies to show those I love that I am still trying so hard to keep my emotional strength going through all that I do but I admit I don’t like taking pics of me in my wheelchair or walker. I try to make sure the pics are from the waist up! 

It’s clear that I am not the poster child for how someone should aim to be with disease, but when I set out on this journey of blogging I only ever wanted to be honest … not perfect. 

I want to face my demons and share my thoughts and hoped that by doing so someone out there would identify and maybe, just maybe, we would see that there are more like us around the world. 

Women are judged on their looks very harshly in this world but women who are also disabled or chronically ill are judged much, much more harshly! 

Perhaps together we can help each other make a peace and make a difference? 

Gentle hugs, 

Trish 

The Joy Of Isolation


When I was much younger, I thought that isolation was a sad and difficult place. A place no one would, or should, want to go. 

But that was many years ago and much has changed since then. 

Today I have a very different relationship with isolation and being alone. A very comfortable and intimate one. I would never have thought it possible. 

Today I feel most at peace when I am alone and I can work through whatever I have to deal with at my own pace and in my own time. I don’t have anyone to help or hinder. 

I enjoy the online community that is available and I can dip in and out when I am physically able. The key words being physically able. 

These days I don’t have as many physical abilities as I once had, so being alone means I don’t have to constantly perform for others. I can be relieved of a lot of the difficulties that having to constantly cater to, and taking care of many people brings. 

Isolation has become the new sanctuary for me and this life. 

I never really thought such a relationship with isolation would be possible when I was a young person. I was trying to experience as much as I could as quickly as I could. But that’s a life time ago. Much has changed. It’s funny what we are looking backwards! 

I think that having to face a lot of challenges and some very difficult places and emotions changes you. Completely. It certainly has for me. 

Things that would have bothered me once no longer bother me at all or bother me far less. Friends come and go like waves on the beach, opportunities change and perspectives alter. 

Isolation gives me the time I need to make sense and peace of it all. It is my nurse and my closest friend. 

Perhaps some of you out there have grown to appreciate being alone in new ways since becoming chronically ill? Perhaps some of you haven’t. We are all different and respond differently. 

It’s strange that years ago when I felt more independent physically, I was far more reliant on others emotionally … and now the opposite is true! 

I guess that is just life and even now it can still surprise me. 

Gentle hugs, 

Trish. 

Square One 


I am writing this whilst in the most awful and mind numbing pain, so forgive me if this is not my best work. 

After almost a decade of all this I thought I would be further down the track of understanding and acceptance. Perhaps I merely hoped I would be. Today reminded me of the very first time I felt pain and frustration, the first time I was so heartbreakingly sad by it all, so I had to ask myself today how far have I really come? 

Not far at all! In fact it feels more like square one again. 

I guess I always told myself that it would become easier and that I would simply make room for the pain and losses somehow, but today I realized I am not that serene and positive guru that I dearly wanted to be. Today I feel broken. 

I don’t know why I gave myself this high benchmark to reach. Perhaps because society expects that you just go away and quietly accept it all and because I don’t really know any other long term sufferers who have become masters in the art of Autoimmune Survival. I think there are many amazing survivors out there, millions in fact, but I just don’t think there is a hierarchy. There are simply chronic survivors and people who don’t have chronic illnesses. No other levels. 

I feel tired, tortured and sad because this is my life now. This pain is always with me. I can never escape it or have a day off. Not even one. I feel sad that I don’t have a different life and I have to just accept this one as my normal now. 

I wouldn’t call this a dark day as much as I would call this a reality day… and the reality is that these diseases are hard. They are cruel. And they take lives away and don’t apologize for one second. 

I am tearful today and I know that this is a natural reaction to a painful and sad situation. I might be tearful tomorrow too. But I hope there is a happier day in my future soon and I wish this for all of you survivors out there who are doing your best too. 

Gentle hugs,

Trish. 

Stay Strong! 


If I had a dollar for every time I heard these words (or read them)! 

As chronically ill fighters we are constantly being told to stay strong when we are struggling or exhausted by it all, but I wonder how many other people could actually do this over long periods of time … like months? Years? Decades? 

It has become a meaningless gesture made worse by its overuse and is now more a throwaway phrase.  
Simply put it isn’t human to be strong all the time! No one can be … telling people who are struggling to be strong is unlikely to be helpful when they need it the most. 

However people will still say this perhaps because they don’t know what else to say to people who are suffering, and will probably be suffering in some way for the rest of their lives… It’s quite unimaginable. 

The fact is that we are strong. If we weren’t we wouldn’t have made it this far! Probably stronger than anyone else has ever had to be for most of their lives! 

But no one, I repeat no one, is strong all the time. Telling someone to stay strong may convey the idea that they are not doing their best or being enough. 

Sometimes I am not going to be strong and that is ok. Sometimes others will not be strong and that is ok too. It’s the human condition. 

If I had told those people who had turned to me for donations, financial assistance, empathy, kindness and help over the years … it’s ok, just be strong! … I am sure I would not have been seen as helpful or understanding in anyway. 

What is strength, after all? 

Is it the ability to never fall or fail? Is it the ability to never need kindness and warmth from another person? Is it to never need anything for yourself? Is it the ability to never hurt or cry? I don’t think this is strength at all. I don’t think this is even human!

A lot of people may want you to be strong so that you don’t impose upon them, sadly that is becoming more true of society today, and therefore they disguise their true motives behind the statement… But it is not a reflection of the sufferers emotional or physical strength. 

Would it not be more important to assure the person that they are not alone in these times? Would it not be more helpful to assure them that their efforts do not go unnoticed? That their pain and suffering has shown what courage they have and what love they have? 

I would not be here today without the love, support, devotion, patience, forgiveness, belief, efforts, commitment, reassurance and hope from the ones I love and from myself. Strength is the product of all those things in combination and not one single entity on its own. 

Strength is the end result when all the other elements are present and working together, it is not the beginning

Gentle hugs, 

Trish.