Making Plans 


As a medically retired and disabled woman I have faced some very harsh realities over the past ten years and done my best to accept them and still keep going. 

There are so many difficult and challenging realities that I can’t avoid and so I try and take a practical attitude when addressing them; But I am far from perfect. 

It was extremely worrying when illnesses slowly started taking over my life and the plans I had made for my future. It takes a long time to accept and the grieving has been an ongoing process. But I can’t avoid it so I just do it as best as I can. 

My former career was that of a project manager and in that role I was extremely aware that life doesn’t always go according to our plans.  As a PM we spend countless hours devising plans for what to do if something should go wrong. It would be dangerous to proceed without contingencies, so we didn’t. 

When I could no longer walk as I once did, we had to develop a plan for how I could get around. When I couldn’t work we had to face some tough financial decisions. It was imperative or else our lives would be further jeopardized. It is because of these planning exercises that we have never had to ask for help or handouts from friends or family. We agreed that whatever was required we would have to do. If we had to sell everything and live much smaller and meager lives then we would just do it! No arguments and no exceptions. Swallow the pride and do what must be done knowing that we would still have each other. 

Whatever it takes

Whilst it is a well accepted truth that we can never predict what will happen to us and when, I personally think it is dangerous not to attempt to try and make a plan B. I am reminded of the immortal words of Monty Python no one expects the inquisition. And we don’t. We live for today but it is always wise to have a plan for when things go awry. When you become long term ill you have to constantly plan everything, including simple outings. 

Years ago I remember making suggestions to a friend for if  they couldn’t work any longer. My friend also has an Autoimmune disease. Sadly it was not recieved well and I was told not to be so negative or pessimistic. I resolved to not discuss such things again and reminded myself that in my eyes these suggestions where well intentioned and not from a negative place, but I respect those who prefer to not consider different possibilities. 

In my current situation if something was to happen to my husband not only would I be deeply emotionally wounded, I would also be physically in need of assistance and care. He plays a huge role in my life and although I dearly wished he didn’t need to, it is the reality of my life now. 

Thus I would be left alone and a huge void would need to be filled. I may even be institutionalized. Although this is extremely sad it is also one possibility and has been a very real outcome for many other chronically ill.  

In Australia today many people in their 40s face being placed in old age care facilities because they have no one who will care for them. It is an extremely sad fact and reality.  It deeply saddens me and I find it heartbreaking. 

I personally don’t have family or freinds who would want to care for me, or that I would want to burden. And my fur kids require caring for too. We are a package deal and so there is much to consider and try to plan for. 

My husband and I have had to have some extremely difficult discussions and ponder some serious scenarios and ask ourselves what if? 

Is this pessimistic? Is it negative? Is it unnecessary? … not to me or us. 

Therefore we have discussed my care on several occasions, and if ever he should need care too. We have taken out insurances. We have contacted people we trust to act as legal guardians and medical authorities on my behalf. We have taken some important legal and financial steps but we realise that there are still some things we dont have answers for but we are always trying to do our best. 

We have agreed on what I would want to do if I deteriorated beyond any quality of life. This was an important conversation to have. 

These difficult conversations where necessary for my peace of mind and although our plans are still not complete and fool proof, they act as an anchor for me when I worry or feel anxious about the future. I am only human after all. 

It is everyone’s personal choice whether to contemplate what if but I do not believe it is a morbid or pointless exercise. 

Just as it is wise to write a will, save for a rainy day or take out insurance policies, I believe it is also beneficial for us to plan for when life throws us more difficulties and challenges and if our health is ever changed or compromised. 

There may be many out there who may disagree and I have no issue with differing opinions. We are all free to plan, or not plan, our lives as we wish. 

If I could speak to my younger, healthier, self I would have encouraged her to plan for a life that doesn’t go as I planned and take steps to protect and provide for the things that matter most. I would have made myself aware of the effect that health plays in life. I encourage healthy people to have that conversation too. But that is just my opinion. 

Even the very act of openly discussing some unwanted and painful possible events has taken away a lot of its power to frighten and distress me. 

Of course I do not know what the future will bring for me and my progressing health issues, but I want to feel that whatever may happen, that I have tried to do what I can to plan for some of it. I owe it to myself and my husband. 

There is nothing easy about a life with chronic illnesses and incurable diseases. We face things that most people may never need to face. But each thing we try to do is an amazing achievement in itself and it can even serve to help us treasure more the little things in life and treasure the people we have even more than most people may ever do. 

Gentle hugs 

Trish. 

Let’s Go Shopping! 


Let’s go shopping!!! 
Either go to the ‘Super Spoonie’ face book group and press the shop button and you will be able to access this amazing store and have fun!!!
Or use the link below 
So exciting! 
# All profits to go to research and support!!! 
http://superspoonie.mymerchstore.com.au/
We are so proud of this milestone and we have hopes that the monies raised will go to helping the Autoimmune and chronic communities. 

May each little step bring us closer to awareness, connecting, support and cures. 

Gentle hugs

Trish 

I Have A Dream 


I can remember like it was yesterday the day I visited the Martin Luther King Memorial in Washington DC. It was breathtaking and such a humbling experience. 

He could not have imagined that some woman from the other side of the world would one day be standing in his memorial and feeling inspired by his immortal words. 

I was struck by the power of someone who could look beyond the pain, the suffering, the ignorance and the social norms to want to make a difference.

It takes a certain personality and a powerful dream… 

As humans we all tend to dream and sometimes we can imagine a goal or an idea so powerful that it has the strength to pull us along, even in the most difficult of circumstances. 

Dreams and ideas take on special meaning and significance to the health impaired, they become the lifeline which we anchor ourselves in this world. 

For a chronically ill mother the dream to be around for her children is a powerful one. For an Autoimmune man it may be the need to keep his family together. 

Sometimes the strongest goals are those made when we are placed in positions where we have nothing left to lose and any step forward will be significant. 

That’s where I found myself. That’s where my urge to be an advocate came from.

It became painfully clear to me that so little is known about Autoimmune diseases that something, anything, had to be done… 

Even from the initial diagnosis of these illnesses life is incredibly difficult and challenging. 

“Many people who have autoimmune disorders have a difficult time getting correct diagnosis. In some cases, people are mistakenly diagnosed with other conditions. Other times, doctors tell patients that their symptoms, which are often vague in the case of an autoimmune disorder, are just in their heads or are stress-related. The quest to find a doctor who can arrive at a proper diagnosis can be difficult.” – Mayo Clinic. 

Doctors are clearly not able to diagnose Autoimmune diseases in a timely manner and therefore leaving patients suffering, alone and isolated. Sometimes this means the diseases may have become systemic before anything is done. As was the case in my battle. 

Disgustingly, many sufferers are treated with painful rejection and attacks on their integrity. Women have faced the brunt of these types of behaviours. 

“Some 40% of women who eventually are found to have a serious autoimmune disease have been told by a physician that they are complainers.” – Los Angeles Times. 

After years of frustration, suffering, isolation and pain a diagnosis can come too late to prevent loss of relationships, careers and self esteem. 

Even in 2017 Autoimmune diseases remain incurable and people are only just becoming aware of how many sufferers there actually are. 

“In America alone there are more than 50 million sufferers officially registered… however there is reason to believe that there are many more than this still undiagnosed” – aarda 

It would be reasonable to assume that if 50 million are registered in the US alone than those figures could easily be over 100 million when considered globally. That is a huge amount of sufferers; both physically and emotionally. 

Furthermore. 

 NIH estimates over 50 million Americans* have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.

Yet…

NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).

many sufferers are left without adequate support from their families, the community and the medical system. Few people even take the time to read or research ADs even when their loved ones are affected! Perhaps because 75% of AD sufferers are women (aarda statistic)? I sincerely hope these serious diseases are not compounded by a sexist attitude. 

And yet sadly … 

Autoimmune disorders such as multiple sclerosis, rheumatoid arthritis, and type 1 diabetes are among the leading causes of death among women under age 65, according to a study published in a public health journal in America in 2000. It is safe to assume that our rates are similar in NZ and Australia.

My dream and the dream that has kept me going, and blogging, for years now is that this can and will change. 

My dream is that we will no longer suffer from some of the terrible physical, emotional, financial and awareness challenges that people like me currently face, and all my Autoimmune Brothers and sisters alike. 

Every little step counts. 

Gentle hugs, 

Trish. 

Trapped 


I saw this today and it instantly conjured up its own meaning for me. 

It is exactly how I feel. Trapped! 

Everyday I am trapped in this body and this reality, despite the many dreams and plans I may have. 

The challenge has always been how can I make any of those plans and dreams come true?

I believe it to be common amongst those of us facing similar physical barriers that in our hearts we want to do something but our bodies now struggle to cooperate. We ultimately need more help to do things and we have to ask for help many times. Sometimes help is not easy to find; regrettably. 

Sometimes I spend so much time trying to figure out how I can achieve some goals that it starts to feel too hard and so, sadly, I may give up. I like to think that most times I push harder than those times I give up. It depends on the day. Sometimes I must let some plans and dreams go. That is reality not weakness

The person I was before my health changed still lives on inside me and maybe as my body changed it has had to evolve.  Perhaps it has become more experienced. It has matured to survive. Still many things remain inside and trapped. 

It is sad that often the world overlooks the goals and achievements of those with physical challenges. Perhaps because they appear small? Perhaps because they don’t understand the struggles involved? Perhaps because they only care for things like money or celebrity now? Perhaps they have been taught to overlook? Who knows… 

If everyone was trapped inside an injured body they may all recognise the spirit and determination that goes into each and every achievement. 

Remembering how hard it was to do something with a bad flu or broken bones can sometimes remind people how hard even simple things can be.

No matter how trapped I feel or get I still dream, I still hope, I still feel and perhaps this is what will make a big difference for me in the life to come.  

Gentle hugs, 

Trish. 

People Stress 


Something that people fail to recognise and understand is the notion of stress, and what it does to the Autoimmune or chronically ill. 

Although it may be written in every piece of literature, on every website and in every medical journal nobody truly understands it and what it means… I hope that this may help. 

Most people think stress amounts to running a marathon, working hard at work one month or getting a divorce. For a healthier person this might be one definition but for many who are health compromised it is not the end of the list. Far from it. 

Noise. Anger. Lights. Fighting. Shouting. Traffic. All these are stressful events. In short, people can be incredibly stressful. 

Stress causes pain, flares, symptoms and complications. Stress causes suffering… Unnecessary suffering. 

Most of us who are chronically ill will avoid situations that may have a potential for stress; at all costs! 

Because some people can be so unpredictable and may not give any consideration to the suffering or pain of the chronically ill, it is for this reason that I have been very cautious about who I choose to be around. 

It is for these reasons that many chronically ill live in exile and as virtual recluses. I know I do!

I avoid people’s fights. I will avoid their demands, their remarks, their judgements and their expectations because ultimately it is me and my husband who have to pay the price, and nurse the pains that follow any stressful or taxing event. 

We have been carefully considering  moving into the country and becoming even more remote and distanced from the rest of the world… We still are considering the practicalities. 

I have since become aware that many people with similar health problems have also made similar changes and I understand completely. In fact many of you may even be nodding your heads now as you read. 

It seems ironic that years ago I was drawn to places like New York, London and Los Angeles, yet since becoming ill it has reversed my nature entirely. I crave quiet. I long for peace. And I nurture solitude. 

Recently a misunderstanding meant that I became embroiled in a heated exchange between several people. Something which I actively avoid. My system is so weak now that this relatively minor altercation made me tired, drained and my nervous system started making my muscles stiffen and strain. Later that night those muscles were painfully contracted and tremor. 

Long after everyone else has moved on their merry way, I am left to pick up the physical pieces. It can take a lot longer. 

When someone makes a cruel remark it is me who has to deal with the pain and hurtful fallout. I have been deprived of my former resilience. 

Thus I have had to work so hard to rebuild my self esteem over the past decade. This has been an enormous task which continues day to day, I can not risk this work to be attacked and undone by a heartless and unthinking person who has no idea how hard I have worked and what I have been through. Therefore people who do cause stress and unnecessary drama are quickly removed from the pool of people that I interact with. Very quickly indeed. 

As I get older and progress with these diseases I have had to make some very necessary and expedient decisions when it comes to the topic of people and stress. 

I can not, and will not, allow further pain and difficulties into my daily equation that I dont absolutely have to allow. Something’s I do still have some say and control over and I guard them zealously. 

I can’t control some stressful situations like finances, deaths, weather and the like. But. I can have some say on what people are allowed into my inner circle and daily contact. 

I don’t people very much anymore but I don’t think these diseases are very people friendly. Especially people who are not self aware or mindful of the affect they may have on others. Hence I don’t cultivate relationships with competitive people, aggressive people, angry people, sarcastic people and people that enjoy causing stress and creating panic and chaos. 

I am hoping that moving to the country I will enjoy even less noise and interactions. 

I can honestly say that I have never been this removed and isolated before, and I spent years on a cattle farm, but I have never had to share my life with such a difficult, painful and limiting diseases and body. It is because of this that I must consider how my body will react to situations and stressors, and try to prepare to manage and cope. 

I wonder how many other brothers and sisters out there may understand and identify? 

Gentle hugs 

Trish

Charity News 


Omg we are excited!! 
For a long time now D and I have been trying to put together a charity which would help raise funds for research and support… 
It’s been a long journey and has stalled sometimes due to many different factors…
But today we had a step forward and spoke to a wonderful lady about getting some merchandise together a ready for sale. 
All profits to go to the charity! 
This is a big thing for me personally as for as long as I have been sick I have also wanted to make a difference. Do something helpful. Make a small contribution rather than just suffer on. 
The blog Autoimmunitygirl, the support groups and this charity has all been part of that plan to make a difference. 
I am so grateful for the people I have met along the way, the ‘family’ I have connected with, and the small steps that have helped make a difference for people. Good people. Amazing people. People who work hard everyday to keep pushing on. 
‘Super spoonie’ is the next step and selling the tshirts will be one way we hope to raise some funds that will go back to the community. 
Thank you Allie Bruhn for your help going forward. And if you can help support this next step by buying a tshirt or spreading the word we would be so grateful!! ❤️

Please help if you can. Every little thing means something. 
https://m.facebook.com/SuperSpoonie/
“We are what we fight for and what we care about… we are what we do” – Dan Brown.