Try and Cry Again… 

This is the third time I have tried an Immune Suppressing Therapy and, sadly, it will be the third time I have failed one. 

I can’t quite explain all my emotions as I write this piece because there is no way to truly describe the way it feels to have your hopes shattered so painfully and on such a deeply personal way.  

I had hoped that this time it would be different. I had prepared myself emotionally and physically for all possible outcomes, but I really only wanted one outcome. Relief. 

As the days passed by after my first injection it wasn’t long before the pain started and the side effects started to overwhelm me. 

It seems that I am one of those people who experience difficult side effects to these biologic therapies. These therapies are used in the hope of treating and controling Autoimmune Diseases by suppressing the bodies Immune system. Some people find them “life changing” and that is why I have kept trying them. Again and again. 

I had scoured the internet and read all the success stories where people had found relief from pain and been able to stabilize their disease activity. I let myself become excited. I imagined myself sleeping and moving with much more ease. It was a wonderful fantasy. 

But then the reality took over. 

For some reason, unknown to me, I am very sensitive to drugs and medications. All medications in fact, but some more than others. It doesn’t take long before my stomach starts to become agonizingly painful and then nausea and fevers take over. Although I have bad migraines and balance issues already, they become much worse the moment these drugs are introduced. 

Ironically, although the DMDs (Immune Suppressants) are supposed to relieve pain and symptoms, one of the worst side effects is that my joint pains are so much worse. Torturously worse! 

I still don’t understand why. 

In fact, as I searched the literature that comes with the drug kit – which includes a very long list of possible side effects which is truly shocking. As well as a cold storage pack, injectable pens, carry bag, nurse, med wipes and leaflets. You are also informed of a long list of side effects that you may encounter including joint pain, heart failure, breathing difficulties, liver damage, leukemia, tumors and various other cancers. 

But I accepted all these risks in the hope, yes hope, of pain releif and slowing down the diseases that are eroding away my body and its organs. 

So I have tried and I have cried again because now I must face the fact that my body is experiencing so many side effects that my quality of life is much worse with the therapy than without it; and that is significant enough. 

We are always told that these therapies are not cures. I understood it isn’t a cure for what is happening inside my body, but I hoped it would help and bring relief. So now I have to inform my specialists that I can’t carry on and I want to suspend this treatment. I am dreading saying the words out loud. I don’t want to have to say them again. I fear it will be a tearful admission met with awkward silence again. But that is the reality for many like me. 

And so now I must begin the grieving process of having tried another therapy and failed it. 

I am sad because it hasn’t helped me and it also hasn’t helped my carer/husband who must also go through this grieving with me. 

If you happen to be starting a new therapy yourself, I truly hope you have the very best of outcomes. I truly do! I love reading success stories of people who have gained improvements and relief… I just wish I was one too. 

Gentle hugs, 


My Dream

I searched for the type of love that can reach across the continents, 

Hear words that are never spoken,

And has a strength that can reach inside a burning star. 
I ached for a love that speaks all languages and has a music that can sooth a broken heart or deepest despair,

And can crush everything in its path, 

But chooses to flow like water between the rocks, 

navigating fear and pain effortlessly. 
I burned for a love that has no past but keeps creating itself with every new day and in every new dream

and with each kiss. 
I yearned for the type of love that makes you both strong and weak in its presence; That promises everything but guarantees nothing more the touch of flesh 

and the hope to go on. 
I dreamed of a love that is endless and yet shines in the darkest times like the constellations, 

with wonder and no limits, 

To travel through this world and to discover new places. 

I wanted all this. 
And so did you. 


We are powerless in the midst of forces beyond our knowledge. fragile and impermanent,

Weak and vulnerable, 

Creators and destroyers, 

Sad and soulful, 

Forever searching amongst riddles too strong for our pale, tired minds and fleshy bodies. 
We must bare witness to all the greatness and majesty that will live on eternal, 

Beyond us,

In spite of us,

And yet, somehow find a home for our souls, where they can try to feel and appreciate what is taking place all around. 
And then… let go… forever. 

The Prize … #poem #truth #love 

To those who travel far and wide 

 In search of riches never heard 

I see such riches everyday 

In a tender touch and loving word
And to those who reach out to the stars 

To place their name on history’s page 

I feel this same pride and wonder still

Whenever I speak my lovers name
All worldly achievements can not compare, 

To the one precious thing this life can give 

For those who know life’s greatest truth

To be loved, is to have truly lived. 
– Trish Dyne, 07.05.2017. 

For The Record…

What surprises me the most these days is the fact that very few people will take the opportunity to ask me, or someone in a similar position as me, what we might  have learned from our struggles…

It’s almost like it’s not allowed to acknowledge that those who have illness might have gained some insights that others may never have. We may have an illness or disease but we are not morally weak, stupid and irrelevant merely because we had the misfortune of getting sick. 

Yet people have asked me the most probing, intimate  questions about my diet, my meds, my exercise regime, my toilet habits and so on… it seems ridiculous to me at times. 

At some point some people seem to think I became my physical disability and illness rather than still being an intellectual and evolving being. I wonder how many others like me feel the same? 

IF I had been asked, and for the record, I would have shared some the following observations of life…

1. No. I don’t like my personal space and choices questioned. They are still mine. 

2. If I were well again I wouldn’t judge or see a lot of things as I have done. Life is life. Everyone is different. 

3. I see more now than I ever saw before. My vision has changed. I notice a lot more. I am saddened by a lot of what I see and I probably didn’t notice these things while I was so busy working. 

4. I hate almost all politicians. None of them seem to care about the people and the things that they should care about. Politicians will slowly and systemically tear down society so that we hate and doubt each other. Or maybe even worse. 

5. I don’t watch or listen to the news. It serves very little role in my life and I don’t need to be told what to think, like, fear, hate or care about; or what to buy. 

6. Family is a commonly used word but I think it should also be a feeling. Very few people feel that they have a family especially when it most useful. Family can also mean many different people and things. 

7. Stepping outside the main stream is hard. If you ever sit outside of what everyone else is doing and thinking you can feel very, very alone and yet it can also be very fulfilling. 

8. It’s not what people say that can hurt the most. It’s what they don’t say. 

9. No one wants to be wrong or make a mistake. It surprises me how hard it is for people to admit a mistake because we all make them. It’s how we learn. 

10. It’s not what you do but how much of you that you put into what you do. Being present matters. 

11.  If you are doing a job or role that you don’t enjoy or appreciate. Leave. Time is too limited. 

12. The only things you remember when things are hard are the things you love. Spend more time loving. It makes hard times barable. 

13.  Don’t people please. It’s a hard habit that only hurts you you and robs you of life.  It’s the hardest habit to break. 

14. As hard as it is, put up good healthy boundaries. It takes some of us a lifetime to learn how. It is still something I am learning. PS people won’t like me it when it conflicts with what they want. But that is their story. 

15. Life hurts and it’s unfair. People hurt and are unfair. 

16. If I had my time again I wouldn’t let people use my weaknesses or personality against me or make me feel inferior for it. A soft heart is often an easy target. 

17. Don’t believe what people say about you. Get to know yourself and then no one will be able to confuse you. 

19. Love is rare. True love is extremely precious. It’s irreplaceable. It’s not a game. It’s not a race. Cherish it. 

20. Take the time to go take the emotional journey through your life, your mistakes, your relationships and pick through it all for the lessons. It’s worth it. 

21. Follow your heart. In the end you will die one day so you may as well live this life your way. 

22. Stop complaining about your car, your boss, your wrinkles, your ass, your hair, your home, your clothes. They are completely irrelevant to the bigger picture. 

23.  Illness does change you but it doesn’t automatically mean we are dumber, useless, unworthy, morbid, boring, morose, unsympathetic, liars, malingerers, attention seekers and unimportant. Sadly, we often have to remind the ignorant of this fact. 

24. It really is the little things that matter. 

25. Stop making life about achievement and wealth. Just stop it!

Gentle hugs, 


For D… 

This week has been hard. And I don’t mean everyday hard. I mean effing hard! 

I have started another immune supressant therapy. I hoped this one would be the one. We both did. 

A week earlier: 

I told my husband many times how scared I was that the new treatment might end up the way the others did. Painful. Soul destroying. Heartbreaking. Failure. 

But we agreed that despite these fears we should try one more time. 

So he called the nurse and arranged a time. She arrived and administered it. She left. We waited… 

And I hoped. 


After being up all night in bone aching, agony, fever, nausea and crippling, scream-out-loud stomach pain, midday has come and D has been up all night with me. We are completely tired and won’t know when this might end. We can’t afford to think about it. It’s a mind game as well as a test of endurance. 

After taking buscopan and OxyContin he arranged some heat packs on my joints and stomach and moved in to comfort me… again. 

If only I had a dollar for every time we were here…But the money would never reimburse us for what we have been through and lost. Ever. 

As I lay exhausted beside him I began to study him and quietly admired him. No other man has ever done what this man has done for me. Nor would they. 

You see, my blog has been a diary of all the things and challenges that have encountered over the past 10 years. Maybe someone will read and understand. Maybe no one will read it or ever understand. Regardless. It is the world seen through my eyes and my heart… but I also realize I am not here alone

He has been here too. Listening.  Helping. Consoling. Advocating. Nursing. Injecting. Crying. Hoping. 

I will often try and post pics of our little adventures and the happy times on social media, so people can see that I am trying to hang on and hang in there. That I am being as brave as I can be. Always…But so is he. 

People rarely or never see what he sees. Not even doctors. He has a front row seat for the worst things and the hardest things that happen to me and to us. 

This blog is dedicated to him. 

The pics he helps me take. The selfies he has helped prepare me for, they are often completely out of context with the experiences and realities that he has. The experiences and reality we both have. 

I read an article recently about an actress and her struggle with domestic violence. She had provided pictures of the evidence of her experiences to the magazine and in one picture she shared her bruises and scratches with the world, so they might see and appreciate. Her bruises were faded and her eyes were red from crying. Whatever people may think of the article, it occurred to me that it takes a lot to show yourself at your worst. At your most human and vulnerable. Women especially. 

We are rarely willing to let ourselves be truly seen and possibly judged by the world. 

Everyone wants to be perfect. Or as close as we can get. 

But D has seen the real me. Everyday. Every heartaching moment. And some how he still sees me as the beautiful and wonderful partner he married. It’s a true miracle. 

And that is why I had to write this FOR D. 

This is what HE sees everyday and somehow he still loves me… it’s because of his strength that I want to find the strength to show what he sees and go completely outside my comfort zone. To honour what he does and all the amazing husbands/partners/wives/carers in the world… thank you. Thank you. Thank you. 

For D,

Love you always… 


The Search For Life…

Many years ago now, as a young child, I used to dream of leaving my humble and rural roots and living an exciting and adventurous life. 

It’s ironic to me, as I lay here in pain, that I would give everything to have a normal life. Or even something resembling a life. 

This doesn’t feel at all like life to me, it feels more like existing. 

I can’t speak for other chronic sufferers but I feel certain I am not alone. 

Isn’t it strange how we go through stages where we want things to be quieter, less stressed, more fun, more predictable, less predictable, more money, less responsibility… and on it goes. 

I was like that once. Always wanting something, and to be someone, that I felt I couldn’t achieve. Now I feel so foolish and wasteful about those times because they were amazing compared to now

Now I feel the daily pressure and pain bearing down on my constantly aging body. I know that there will be a time when I won’t be able to distinguish between the pain that chronic illness and Autoimmune diseases have given me and what is the result of old age. The hands that ache to type this will no doubt weaken further as I age. What will be a flare and what will be aging decline?

Sometimes it is extremely sad and sobering  for me to think that I will have spent most of my life as a pained, aged and decrepit person, instead of enjoying every wonderous decade. They have been taken from me. I don’t mind saying that I feel cheated. Very cheated. 

I am sure there must be others who feel similar. 

So, coming to the realization that the interesting and amazing life that I had yearned for is vanishing before me, I must admit that I am struggling to make some sense of it all and salvage some useful and sage like wisdom from it. 

I can’t press the rewind button. 

I can’t press the refresh button. 

I can’t wave a magic wand. 

And that’s where I sit. Waiting for my answers and my yogi like wisdom to appear. Always very aware that the clock is ticking and time is disappearing before me. How many doors have closed? Never to open again. 

I watch my husband age and wish that I was more of a partner for him. Perhaps that’s really the hardest regret of all, not just the life that I could have had for myself, but the life I would have liked to give others. 

Some people may read this and feel that these are the words of depression and darkeness, however few will realize that they are the very sober and truthful admissions of someone who is doing their best to be realistic and honest. But some people will understand. 

I am sure there must be others who feel similar. 

Gentle hugs,