How It Happened

It’s always so surprising what people will say, and how they will recall an event after it happened.

Generally they will tend to say something that will fit their own beliefs and narrative. But is it the truth? Is it what really happened?

Recently I read an article written about someone who had committed suicide and there were comments by various people about what led to the death of this person, as I sat and read about someone I don’t know it occurred to me what is the real truth behind the events? Does anyone really know? Can anyone really know?

Think for a moment about something that you might have done years ago, now remove your own knowledge of the event and assume that of a bystander. What could they have thought about your actions? How would they describe them, given that they know nothing about you and what you were thinking at the time? It may be a very different story and explanation entirely.

But that’s the human condition. Isn’t it?

Things we know nothing about happen all the time, and yet we try to form explanations of them based on our limited understanding of the world and humanity.

Last year we lost a fellow Autoimmune fighter due to complications caused by their disease. I didn’t know the person intimately, only online, but I was still saddened. I, like others, felt a sense of loss. This person had shared with the group of online strangers their daily physical and emotional challenges, because they knew that these strangers would understand more than anyone else would. More than their parents. More than their partner. More than their closest friend. More than their doctors. These invisible, unknown people had a better understanding of what life was like than those physically closer to them.

That struck me as very sad.

One day it will be my turn. One day I will pass away and I am sure that many people will have their own versions of what my life was like.

I am sure comments may be passed about my battle with long term chronic illness and depending on who the person is they will have formed their own opinions of what that meant for me and my life.

Some may say she didn’t try to get better. Some may say that they think it was the drugs that I took which caused problems. Some may say it was because she had isolated herself that caused my demise. Some may even believe ‘she was a hypochondriac and couldn’t possibly have been that sick’ and take comfort in the fact that they didn’t listen to my numerous calls for awareness.

Others may even believe it was because I didn’t eat enough kale or some other wonder food…

I have resigned myself to the fact that perhaps very few will ever accept the fact that many chronic sufferers will pass because of this one plain truth…

There is currently no cure for Autoimmune diseases.

People will believe and say what they want to, but I hope that in my lifetime I did my best to help remind the world that we need cures and not blind accusations.

Gentle hugs,


Putting Yourself Out There.

I believe this piece can easily apply to anyone these days, sick or well, and it isn’t an easy topic to tackle. But I will do my best, as always.

I find these days it is increasingly difficult for people to put themselves ‘out there’ due to the amount of people who seem to take offense and issue with every little thing we do or say.

What is happening to us as a society??

Each picture we share, each comment we make, each detail we reveal about ourselves seem to motivate people to not only form their own opinions (even if they don’t have a clue about all the facts or factors) and to direct them at you.

My husband and I discussed this in depth and he said he feels the same pressure and confusion every day now. Every single call, every single exchange and every single transaction is fraught with potential problems. He says he no longer wants to share anything with anyone anymore. It is that bad.

Friends, family, business interactions and the general public are hostile places and potentially painful experiences.

Sadly, I agree with him.

What has happened to us as a society that we feel entitled to pass judgement on each other’s every move and decisions?

My mother once told me that in order to stay sane in this world you have to be prepared to keep to yourself and let people’s comments slide off your back. Build a protective shell around yourself and be prepared to be alone for most of your life.

She lived a very isolated existence in her later years, avoiding social situations, businesses and the general public. But she was happy to plod along in her garden and on her farm, alone. She was content with fewer and fewer people in her life and I now understand why.

I didn’t want to believe her back then and what she told me about people in general, but I absolutely do now.

Things have gotten so bad that my husband and I agree that we should not share anything with anyone anymore and keep to ourselves; even more than we do already.

I can’t help feel a deep sadness that things like respect and encouragement are going and social interactions are becoming more and more like a blood sport.

The days where everyone feels entitled and empowered outweighs responsibility and compassion.

Time will tell if this way of interacting will be more peaceful, less stressful and far less disappointing for us, but I can’t help feeling sad that this is where we are at in 2018 and this is what we are forced into becoming.

Gentle hugs,



The last 12 months have been some of the hardest times in my battle so far. I felt like I was slowly losing so much ground and that progression was taking me down emotionally and physically.

It was becoming harder to watch the world go by and wonder where my downward spiral would lead me.

I had become more and more house bound and very rarely got out anymore. My home has been my refuge and my confinement.

I felt particularly saddened by the fact that other people’s lives where always changing and progressing yet mine seem to be the same four walls and the same routine over and over.

It was all becoming too much. I needed something to change. To change for the better. Any change might be helpful to where I was… but what?

The drugs hadn’t stopped things, the diet changes were not the cure, meditation and positive thinking was not giving me back the functionality I was hoping for. Doctors were not offering me reassuring words and things were becoming more and more complicated with each new specialist appointment. What could I do to change something for the better.

Answers were not jumping out at me.

My charity was operational and I had done all I could with it. My blog had been going for years and I even started questioning whether it was helping anyone or achieving what I set out to do…

Since I couldn’t seem to be able to control anything in my life and predict where anything was going I decided to look around me and I wondered what I might still be able to do.

As I sat in my bedroom one day I realized that I had seen the same walls, the same colours, the same floor and same lamp for nearly 10 years now… Perhaps I could change my environment?!

My imagination started to take flight and even though I was still in terrible pain and battling so many different things on a daily basis, I started to find some new joy again.

I went to work researching what I would like to do and what I could do, this soon turned into a complete redecorating project!

I became determined that my house would be transformed even if I couldn’t be transformed. It would be refreshed, renewed, revived and reloved!

The work began several weeks ago now and it has been giving me the ability to look forward to something. To be inspired and to feel different.

As I sit awake at night, body suffering and tortured, my mind is painting walls, hanging my art, and laying soft furnishings here and there. It is such a breath of fresh air in the midst of this battle.

The changes I need so desperately will become changes to my home, my nest, my sanctuary and my refuge. An improvement in the outside world, despite the fact that my physical body can’t seem to achieve it.

As I look through paint samples and seating options I feel an emotional lift that I have long needed. After years since retiring as a Project Manager I have a project again!

The scented candle burning beside me now is making me feel excited and although I have been too sick and in pain to see some of the changes taking place outside my bedroom, I feel excited about what it will all become.

Feeling excited is something I didn’t think I might feel again and I intend to savor every moment of it.

Gentle hugs,


Super Spoonie Entry 👚

I am SO moved by those of you who have written in and shared your stories in the t shirt giveaway!

I am amazed by our community out there and the wonderful way in which you have overcome obstacles and challenges.

The messages I have been receiving are just so awesome ❤️

A recent entrant for the giveaway also agreed to share their story (name withheld for privacy) and I am so honoured when you agree to share your experiences and support/encourage your fellow chronic fighters!

If you too would like the chance to have your own super t shirt. Please send in a message with your own experience of when you went through a challenging time and how you made it through! I may have to give some extra t shirts! 😘



Recent entry below.

(Shared with permission)

– – – – – – – – – – – –

This is my entry for the spoonie t-shirt competition. 🙂

I have fibromyalgia/CFS & severe depression. Just over 2 years ago I lost my job due to sudden onset of FM & was trying to juggle two girls & my abusive ex-husband. I got to the point I was in bed more than out of it. Then I got evicted because my little girl who was 9 became violent & damaged the house we were renting from my boss.

She lived downstairs from us. So job gone, house gone, up at the hospital with my daughter every weekend – and we were almost homeless. 2 days before we had to be out I found a rental for us. I couldn’t afford it mind you but it kept us off the streets. 2 years on we are in social housing & i’m still really sick. The girls are doing better – my 15 year old has a job at KFC, a traineeship & wants to be a vet nurse. My youngest at 12 is a beautiful “nerd” & wants to go to Uni. I’m still trying hard to recover – every day is a battle. But I know I’ll never give up. 🙂

Good luck to all the entrants & thanks for encouraging us spoonies to open up & share our stories. Xx

Thank you for calling me brave : that’s very kind of you & means a lot🙂:)

Different Stories.

There are so many different support groups and so many different sufferers and it always surprises me how different we all are.

Everyone who shares their story and struggles will either find someone who can relate to their situation or they will find someone who may be worse off, there is never any way to tell.

I can understand why able bodied people can become confused when they know person X who has an illness and yet they are working and holidaying and no one would even suspect they had that illness… and then there is person Y. Person Y is bedridden and rarely goes anywhere. They struggle to do the basic things … but they have the exact same disease!

How can this be true?!

Surely someone is lying and just trying to get attention?! … sadly that’s what most people think but they possibly don’t not say it. At least we hope they don’t say such ignorant things anyway, but often times a lot of people do say such things and this is one of the number one problem that the chronically ill face; Shaming and bullying.

However. Aside from the general public not knowing the truth and engaging in such hurtful speculation, it is also true that many sufferers don’t understand and struggle to accept why their illness has been more disabling than someone else’s.

It can be really hard to accept.

You see we all want to be as high functioning as we can. We all want to have the best mobility we can have and the best quality of life that these illness can allow. But we are all so different!

Rarely are two sufferers in the exact same place on the scale at any given time. Ever.

I spent a lot of time wanting so much to be in the higher end of the functioning scale. I struggled to understand why some others were able to do more and were in less pain. I felt a failure and I felt so alone.

What was I doing wrong?

I tried everything… And I do mean EVERYTHING!

I still see many of my fellow sufferers able to do so many more things than me and live with much more quality of life and I truly wish that was my story too. But it isn’t.

And then one day I met someone who had very similar symptoms to me and was struggling as much as me and it felt strangely… wonderful!

Like finding a long lost friend!

I wish we were not in a similar situation but I was also glad to have someone who finally understood some of how I felt. A real soul mate.

Why does this happen? Why are some people seemingly more affected than others? Why are some able to achieve remission? Why can some people walk and drive and work while others can barely move? No one knows. Not even doctors!

Some say it may be due to when they were diagnosed, or how quickly they got medications, or how old they were, their genes, their backgrounds … I believe it could be all of the above or none. Maybe it’s just dumb luck!

We all have a different story and we all have very different paths with these illnesses. There is no way of predicting which one you will be or where you will end up. So many different possibilities.

Whilst I wish I was so much more able and higher functioning I can not do anything but somehow try to work with what life has handed me.

I didn’t want one of these diseases and yet I have been diagnosed with several! It seems so unfair sometimes… And it is.

But that is how life goes.

Sometimes accepting that we all have different stories is as hard as accepting the illness in the first place.

All I know is that I don’t want to add the pain of comparing myself with other sufferers to my already difficult circumstances. I work very hard at being happy for those that are at a better end of the scale than me, and focusing on how I can still enjoy the life I have.

Gentle hugs,


What To Do?

I wish I knew the answers to some of these ever elusive questions. Truly.

What should I do now, or try, or read, or eat, or take? …

to date I have tried a dozen different diet changes from paleo to gluten free and everything in between.

To date I have attempted every exercise program from Pilates to hydro therapy. I even had my own home gym. But… here I am! Nothing stopped what was happening no matter how hard I pushed myself.

To date I have tried no less than 100 different supplements, from CoQ10 to Chinese herbs, and supplements based on a hair sample. Some I still take, some made me much worse. I no longer jump into meds and supplements without a great deal of caution and contemplation!

I have also tried three different biologic therapies and countless steroid injections and IV’s.

…As well as taking a dozen different medications and injections. Daily.


Simple. To get back some of the abilities I once had. To be some of what I was. To be more than just a body on a bed. To stop the endless pain that haunts every day and night. And to be in this world. To have a better quality of life. No matter how small an improvement it may be.

The world doesn’t have much patience and acceptance for people like me… But we still keep trying. They don’t often see how truly hard we try.

I know sufferers who have been diagnosed for 25 years or more (and no doubt suffered symptoms for a lot longer) who still wait for breakthroughs and volunteer themselves for experimental trials. With hope of improvements.

While it seems the world forms opinions about sufferers like me ranging from acceptance, compassion to complete disinterest and doubt, we still have no choice but to contemplate questions about what do we do now?

Where do we go from here and how do we learn better ways to deal with the challenges of everyday? Every. Single. Day.

It is some of the constant questions I ask myself. Over and over.

I keep asking myself to look for answers and better ways so that I can be more for those I love. How do I spare the ones I love from having to share this difficult road?

I know that people will choose their own actions too, regardless of what I try to do and attempt. In those cases I can only choose how to respond to the things I can’t change.

What to do?

The question isn’t an easy one when you don’t have as many abilities, capabilities and opportunities that so many other people have.

In the end someone will always judge us for what we did, what we didn’t do or what we tried to do… but how we judge ourselves is really the most important thing of all. I am learning this more and more each day. I am trying to make peace with this everyday.

In the end the only thing I can do is to do my best. Everyday. And in the end that will have to be enough.

Gentle hugs,