I have decided to write about issues outside of the usual Autoimmune wheelhouse more this year if for no other reason than I feel it my privilege as this is my own site and also that I am at an age where I owe it to myself now.

I don’t assume my readers will always agree or appreciate some of the topics I may write about but I am resilient enough, and at peace with myself enough, that I am always happy to agree to disagree and always willing to respect another’s point of view.

So with this in mind I will add my voice to some of the controversy surrounding that great plague of the 2000’s; COVID 19.

I feel there are many points being made in the current epidemic around lockdowns, masks, immunisations and the way in which many governments have handled things and the terrible confusion that is rife these days. Confusion and fear is often a precursor to anger and retaliation from the general population and we are witnessing this globally.

Protestors and demonstrators are gathering together and organising rallies in city streets to show their anger and frustration, and on some levels it is understandable. We are all frustrated, confused, concerned and wondering what the future will look like as it is increasingly likely that we will be living with a Covid culture for a long time to come.

One reason the protestors are using for their show of force is the concept of freedoms. I for one do believe in our right and freedoms and a right to free speech is one of those things. Many of us living in western society pride it as one of our most precious rights and we hope to always have this right and work hard to protect it.

I have read countless references to how our forefathers and grandfathers have fought in wars to secure our current freedoms. However, many are using this as a reason for why they are protesting and I have spent a lot of time pondering this.

I absolutely respect and honour our forefathers for all that they have fought for and sacrificed in the wars before but I also can’t help but think that many of the reasons they did what they did was also from the concept of sacrifice and responsibility to their country and to their fellow man also.

The notion that we all have inalienable rights seems to overshadow the fact that we also have just as much responsibility which we cannot forget or divest ourselves of. Responsibility to ourselves, our family, our community, our country and our world.

The notion of responsibility seems to be an ‘inconvenient truth’ these days in the rights based mentality but it is none the less important for the survival of us all.

This often means we are required to do things, give things, endure things, pay things and respect some things that aren’t always convenient, pleasant or enjoyable. We seem to be faced with many of those things currently as the pandemic continues to be the constant fear in the hearts and minds of the world.

I for one don’t love doing all the things being asked by our leading scientist, physicians and health organisations. They can be incredibly impacting on our daily lives; Absolutely. But as someone that has had to accept and deal with struggles and challenges for decades now, it is not at all uncommon for me.

For those who haven’t had the types of struggles and challenges that those of us with health issues face every day of our lives this is all very new. It must be quite daunting and it takes times to get the collective heads around it.

Whatever lays ahead in the Covid environment we should make our choices based not only on our individual rights but we should also have a commitment to the notion of our responsibility to each other and what we need to do to help, protect and serve the greater good. This is how we survive as a species and as well as our inalienable rights we also have a duty and responsibility to the rest of the world and this can require sacrifice, just like that of our forefathers.

Gentle hugs,

Trish

When we are born we never really know who we are or what we are going to be. Even when we are old. It seems like the minute you figure out what and who you are life comes along and changes you.

Being born in the seventies (yes, I am that old) it wasn’t ever told to me what being a woman would mean but occasionally a relative might utter “be a lady” or “that’s just what being a woman is”. Many things I rejected. Some I had to accept.

I have since met many women in my life time and I can honestly say they have all been different to me and I absolutely adore them for it!

Some women I have looked up to and some have helped make me who I am today. But they have all taught me that aside from some biological similarities we are all unique and amazing; Especially the Autoimmunes I have met along the way.

The first woman I ever met, my mother, taught me so much about defying female stereotypes that even today, after she has gone, her lessons are still living on and I see so much of her in myself. Her life lessons, pain, spirit, love and humour lives on in me day after day.

I have met and loved some very special women in my lifetime and it’s a different love from any man I have ever met. No one will love you like a woman. No one will stand by you like a woman. No one will heal you like a woman and no one will nurture your soul like a woman. We have such capacity to love, forgive, commit and hang on that is unsurpassed by men and we are there to pick up the pieces when things break… And they always do.

To be loved by a woman is the greatest thing that this world has to give and as I look over the people owe my life to now in this broken, painful and challenging battle, it is the women that have stuck by me that I am most grateful for.

I can’t explain all the things I have come to love, appreciate and cherish about the women I have met in my lifetime but my hope is that I will always be able to show them how much they mean to me. Even when I have little time, health or strength to give them back. The sisterhood is real. It is this invisible blanket that holds the world together and comforts us when we need it most. I have been lucky to have fallen in love with some special men in my life but I feel that loving the women in my life is every bit as special and meaningful to me too.

You know who you are. Your faces come to me now and everyday and always will. My life has been made by you all and I will never forget you. Thank you for being there, for being you and for loving me when I need it most.

Gentle hugs,

Trish

Social media. It is quite an odd term given to this global phenomenon, given that it rarely has any of the features or benefits of being ‘social’. Perhaps it is that I come from a very different time or generation, that predates the computer age and all it’s current trappings, that I remember a time when being social was very different as it is now.

Being social 30 years ago required that you arranged a meeting time and place with your friends and loved ones, you spent time together, interacted, shared and responded in very human and respectful ways. It would often become the memories that you cherished later in life.

I was no different to the rest of the world when I jumped on the social media wagon and dived in with curious hope of connecting to people in ways i had never experienced before. And it was certainly a different experience indeed.

I noticed some of the benefits of being able to ‘connect’ to people all over the world and people I would not have otherwise ‘met’. As a chronically Ill person it had many advantages for me as I was often unable to ‘meet with’ or ‘visit’ the people I loved and related to. It was a very powerful tool for those who had been isolated, alone, hurting and cut off from the rest of the world.

Until things started changing…

I started seeing some very disturbing and strange things growing from within social media, things that I haven’t been enjoying or benefitting from. Here are some of those things. 1. It became a new arena for competing with others and looking down on others. 2. It is a very manipulative tool which only shows the things that people WANT you to see or believe. 3. It has become a very powerful marketing tool with a captive audience and many ways to sell products and ideas. 4. Anyone with a keyboard became overnight experts, commentators, activists and moral adjudicators.

People have been looking to social media for validation of themselves instead of looking within themselves. It has become the case that if we couldn’t be happy or successful than at least we could be popular and liked. Likes and clicks replaced peace and self esteem… I have been extremely saddened by this particular aspect.

I am the first to admit I have contributed to all these things and checking my social media apps was the first thing I did in the morning and the last thing I did at night. I was it’s willing slave. Until recently.

Instant gratification and virtue signalling are the new designer drugs without the need to actually do something or earn something. while all the time we are losing our touch with each other and empathy with our fellow man (and woman).

During the pandemic I have been given pause to notice how reliant we have all become and how this is not going to change overnight; or maybe ever. I recognised how isolated, stressed, scared, depressed and disconnected we have become and how much we truly missed human contact. Our mental health and survival relies on many other aspects of social interaction and contact which can’t be replaced by a computer or phone.

We are not designed to live in isolation and without real connection with others. We have not evolved to become single entities. Our reliance on social media is testimony to how much we need each other. What I am horrified at is how we seem to be losing our empathy, understanding, kindness and respect for each other that can not be replaced by a screen or monitor.

Moreover the rise in online bullying, keyboard attacking and anonymous thought policing is a truly horrific aspect which should make us all concerned. I weep for the instances I have encountered and the effects it has on us all as human beings.

The amount of misinformation and manipulation is something we all need to be aware of and learn better ways to protect ourselves against. With every advancement in technology there are also dangers and challenges. I have decided to take time away from social media and focus on things that I believe I may have lost along the way in the past decade or more.

My aim now is to find balance between my online presence and my physical presence and to rekindle relationships in more meaningful ways. Relationships with myself and others. I want to know who I am and appreciate who I am in more ways than the current social media platforms allow and grow myself this year. I don’t dismiss the important tool that online communications are but as a person, a human being and a social creature I need the important things that only the outside world and others can truly provide. i want yo be free to experience, make up my own mind, feel and interact this world on my own terms without being caught in the World Wide Web.

Gentle hugs,

Trish.

Like many people around the world, 2021 was the worst year of my life… And that’s saying something! My only hope 2022 is that it isn’t as bad.

Speaking to many able bodied last year I was struck by the amount of fear, stress, confusion, anguish and uncertainty they were all feeling. it struck me that for the first time able bodied people seem to be feeling the same type of feelings that those of us with health issues have daily, only on a global scale.

It is regrettable that it takes a global pandemic for people to begin to comprehend what people like me must learn to live with every day of our lives. I truly wish it didn’t have to be so.

Things like worrying about the future, fearing what lays ahead, afraid and confused by all that’s happening. Anxious about going out into the world, feeling cut off and estranged from others, isolated and lonely. These are all the things that many autoimmune sufferers live with on a daily basis, and very rarely is it ever recognised.

Another common theme emerging from the past two years is that people have come to miss some of the most fundamental things to our human needs; the need to touch.

The importance and significance of being able to hug, hold, shake hands and touch each other is taken for granted until something like a global pandemic occurs and we are forced to keep our distance physically and emotionally.

It was one of the most painful things that I experienced when I first became so unwell. Not being able to interact with people and feeling isolated at home I missed hugging, holding and all the little things that human contact once provided as I was confined to my home and suffering in pain.

Many autoimmune sufferers are home alone while their partners and families must continue on. Our pain must be endured alone and our loneliness becomes palpable. As many people now have realised the harsh realities of mental illness, depression and anxiety in the time of pandemic, very few realised the effects that were being felt for many years around the world in the autoimmune and chronically Ill sufferers.

The backlash from society of retaliation, anger, fear, stress and frustration at being denied many of the things they have had access to throughout their lives are familiar feelings for the chronically Ill. our lives, abilities, freedoms are taken away by our health and it is no less difficult for us.

Around the world people have lost their businesses, jobs, livelihoods and concern for what will happen to them financially has driven people to such pain and suffering and loss. It is a harsh reality for those of us who lost the careers and financial stability we once had, only for us we may never be able to have these things again.

Many autoimmune sufferers, like me, take immune suppressing drugs, steroids, chemotherapy drugs and more which places us in constant risk whenever we go anywhere or do anything outside our homes. As governments emphasise the risks that people are under from the Covid virus it is not as accepted by the healthier population in the same way it impacts the lives of the chronically Ill. Any virus or illness is a threat and a greater risk to those of us who have very little immunity to withstand it.

The greatest toll this pandemic has taken has been on our elderly who have lowered immunity and the chronically Ill or immune suppressed but these numbers are not often regarded as significant by the able bodied. I am not suggesting that healthier people have not also suffered from Covid infections but I believe the mortality rates are much lesser than those who have compromised immune systems.

Feeling isolated, fearful, stressed, alone, confused and suffering is nothing new for autoimmune sufferers and it is immensely sad that it takes something like a global pandemic for healthier people to experience some of the difficulties that we have lived with for years and even decades. If some good can come from such things I hope that we as people will learn new empathy for the chronically Ill and gain insights into our daily battles that have never been seen before and perhaps the world will be able to appreciate the little things, the freedoms and the lives that they had been taking for granted for so long.

Gentle hugs,

Trish

Some of the most painful aspects of chronic illnesses are not just the physical pains we must endure but also the emotions around our sense of self and our ability to stay in control of our lives. It is a constant battle.

Little by little our illnesses can strip away the things we have spent our lives developing, building, enjoying and identifying with. Overnight our careers that we spent our lives training for, developing for, enjoying, focusing on and sacrificing for can be gone. Leaving the rest of our friends and loved ones still doing the things we can’t.

Our careers are also our financial security and part of our identity as people. How many times have you been asked “what do you do for a living?” and you quickly realize how significant it is to other people. Many people even have their self worth invested in their job title and their place on the corporate ladder. But what happens when all that is taken away?

It’s a huge identity crisis and made me feel absolutely worthless.

If you don’t have alternative financial stability then many of us become dependent on the welfare system or relatives/loved ones for support. We lose more dignity when we feel we are a burden on others and no longer in control of what we do and how we live. It’s humiliating at times.

Even doctors will treat you more differently than they do other able bodied people. I can clearly contrast the way doctors and health care workers treated me when I was a healthier, independent woman and when I became dependent on the system for my health and security. It can be incredibly dehumanizing.

As people around you become frustrated with your health and inabilities they can say things that hurt us deeply, even if it is unintended. They are particularly difficult wounds because they come from those people we love and rely upon for our strength and to keep going. A cruel, thoughtless or shaming word from them and the damage is utterly devastating.

Being reliant upon strangers, health care workers and administrators is particularly hard as they have so much control over your daily life and they are often completely disinterested in you and you are merely a number to them.

Losing abilities like driving and being able to go out in the world, unaided, is also devastating and all these things can become overwhelming to people such as myself who have always treasured freedom and independence.

As we have more and more tests done on us and our bodies probed and invaded, we feel the last shred of dignity slip from us. After many years of this most chronically ill would rather stay home and suffer then go to another appointment or see another doctor in the ever changing landscape that is the public healthcare system.

Able bodied people can plan holidays, parties, social activities, outings and make plans that we can simply no longer do without help and the strong possibility that we could be too sick to do them. when we can’t do them it hurts us much more deeply than the average person because it may have been something that we had been looking forward to or even living for!

I have had to learn how to accept these things and build a wall to protect myself and the dignity that I have left. I have had to let the unthinking words of friends and loved ones slide off my back and build strong boundaries about who I can let into my life and share a close connection with.

I have had to find a doctor that sees me as a person and beyond my physical symptoms, and this alone can take many many years to find! I have had to find friends who are both empathic and patient. I have had to work hard on my self talk and how I see myself. However, this is an ongoing battle for me and I have frequent relapses and times of utter despair and worthlessness. In those times I am reliant on my inner circle to help me back on my feet and keep going.

I am particularly careful to avoid those people who often try to compete with their “…oh that happens to me too!” Or “I have been in worse situations” when they interact with you. Especially when they are not living with illnesses and have not lost so much of their existence to diseases.

These little passive aggressive comments only serve to try and belittle or demean our daily struggles and rob us of our dignity. The fight for our self esteem, dignity and independence is a constant one and often we must fight ourselves and our emotions when stress, pain, flares, relapses and life events come along to derail us.

I am fortunate to have found a few chronic buddies that have become my world and we share our struggles and support each other the best ways we know how. We give more to each other than most able bodied friendships share because we keep each other alive and keep each other going in times that most people could never imagine.

My inner circle (no more than a handful of people) are tried and true. They love me and believe in me when I can’t do it myself. They hold me when I am drowning and they tell me how much I mean in their lives. Knowing that we are worth something to someone else when we feel like we don’t mean anything to ourselves is so important that I can not adequately describe with mere words.

Everyone needs dignity and support in life to cope with all that it throws at us but this is especially true of those who must fight for life every day and live a life that very few can imagine.

Gentle hugs,

Trish

For those who have had any experience with pain it is well accepted that it changes you. No matter who you are or how immutable you think you may be, after spending time living with pain it changes who you are at the core. No exceptions.

I have often marveled (even grieved) at how much I have been changed by my daily battles with pain, and various other challenges, I scarcely recognize the person I was compared to the person I am today. Even the most stoic amongst us will no doubt experience this, even if their challenges are not as noticeable or as great. It still changes us.

During times of flares and relapses the daily struggles are transformed into Herculean challenges which takes every bit of you emotionally, mentally, physically and financially to endure them. During these times I find myself feeling completely disconnected to my surroundings, my friends, my loved ones and even myself.

I have wondered if other Autoimmunes experience the same?

Like a soldier in the midst of war and completely engaged in battling the enemy, I am in the trenches for my health and fighting hard. The casualties are numerous and the first to be lost has always been my connection with my life.

Since it is so hard to explain to others what this war is like I simply don’t tell them. I have to disconnect myself from them as any explanation would be utterly lost on them. They simply can not understand what this is like for me and I can’t adequately inform them.

Much like a returning soldier who has experienced the horror of wars, there are no words to convey what it is truly like to those who have never fought, and it really only has meaning to other veterans, I can’t seem to convey this to friends and loved ones who may be curious as to how I am and so I simply say nothing. Disconnect.

After a flare or relapse settles down a little I find it very hard to resume the normal course of my days again and feel quite lost and emptied. It takes time for things to settle again and I feel completely disconnected to my normal life again.

For those that knew me prior to my illnesses taking over it is quite surreal for me to interact with them when they dearly want that the person I was to materialize and can not see that she is gone and deeply changed. They cling to those earlier memories of me which only serves to make me feel even more disconnected to them and myself.

It is often why I don’t have much interaction with them at all these days as it is unbearably sad for me at times to constantly mourn the person I was and lament the person I am now. Often the person they remember is still inside and has been in prisoned by this damaged physical shackle. I am disconnected from my past and present.

To try to reconcile the two is a mammoth task that I have not yet mastered but dearly hope to someday, if at all possible.

One way I have been able to cope through these times has come in the form of someone close to me who not only knows me on a very deep level, the woman I am deep inside, my hopes, character, personality and who also accepts my current persona and can help mend the rift and ground me when these two people (me) become disconnected internally.

When the war is raging and I become so lost I find myself free falling, spiraling, lost and without focus, like the earth is moving beneath my find and I am straining to stay upright. ]they] catch me and offer direction for which way to look. [they] reach in and grab hold of me when [they] can see that disconnection taking place and although [they] may not ever know what I am truly going through, [they] do know me.

Without this I would not be able to put the pieces back together and connect the dots alone. I just can’t do it. I hate that I can’t do this for myself but am also deeply grateful that I have someone who can in the meantime. My thanks and love for what [they] do many times must remain unspoken as there is no way to truly express it, but I also wonder if my fellow Autoimmunes experience these same things in their journey?

We all need someone to help put us back together emotionally and mentally when our physical selves are so damaged, uncontrollable and unpredictable and one of the hardest parts of these diseases is not only losing our bodies to them but also trying not to completely lose ourselves.

I hope you all have a person whomever they are. Someone who truly knows you and can help you reconnect and if you don’t have them currently I urge you to take the time to find them and give them the tools of truly knowing you on a deeper level so they can help you find your way home again even in the darkest of times.

Gentle hugs,

Trish

Thank you for your support and nominations.

It means a lot to think I have helped someone or connected with someone out there through my writing.

Whenever something difficult has happened in my life I have always been told by those I have turned to “you will be ok… you’re so strong”.

I have no doubt that they are well meaning and honest words when they are offered but the truth is that no matter how strong someone can be, we just aren’t strong all the time… And shouldn’t feel we have to be.

At my age I have encountered a lot of life events that have been difficult to cope with and although I have tried to do my best it is not possible to be a pillar of strength all the time.

My current circumstances has seen my inner strength and resolve ebb and wane constantly and with it my health has deteriorated rapidly due to the stress and uncertainty of it all.

Often times our friends and loved ones don’t realise that our Autoimmune diseases can be too much to carry already and then when traumatic events happen on top of that it can be devastating and too much to handle for anyone; even a strong person.

My mother was someone I considered a very strong, determined woman but I also saw how fragile she was and how much assistance she needed to cope with her own challenges in life. She was someone I admired for her sheer will power, unrelenting determination and courage, but like all things they have their limits and no matter who we are, what we have seen and what we have been through, we all need help.

What has surprised me during this period of my life is that the people I may have expected to help (as I have helped them in the past) have not stepped up and, conversely, the people I could not have ever imagined have offered kindness that has touched me deeply.

It occurs me that as human beings we are supposed to find strength from our connections to each other and our love for each other. We don’t have to be strong on our own. It is unreasonable to expect us to cope on our own and I don’t think we do ourselves or our loved ones any assistance by saying to them “you will be ok … you are strong”. It only compounds our feelings of helplessness and despair when we are struggling by suggesting that we are also weak for not being able to cope alone.

When I moved to this city I could never have predicted the enormous health issues I would face and the emotional, financial and physical challenges I would face. I moved for work and without knowing anyone or having family or loved ones here. This wasn’t as daunting when I was healthier, working, social and physically capable to take on all the demands that was placed on me. But with every new challenge, blow and life event it has been excruciating to deal with alone.

Human beings are social creatures and we need love, support, kindness, help, assistance, hope and care during many times in life. We rely on each other for those things and shouldn’t have to meet each challenge alone. As the world gets busier, colder, more isolated and disconnected I worry that we will lack the most vital thing we all need during tough times; each other.

Strength doesn’t come from being isolated, alone, and being told to deal with life events and suffering on our own. It comes from reaching out, helping each other, loving each other and giving to each other as much as possible.

After all, the strongest armies are made up of fellow fighters, comrades and those who will always have your back and that’s how they survive and fight on; together.

Gentle hugs,

Trish

I have always been the type to give help and support and never ask for it.

A dear friend has encouraged me to now ask for help and as difficult as this is I am going to do my best to overcome my lifelong battles and allow myself to be helped in return.

I don’t expect anything from my fellow fighters out there but will be humbled and thankful for anything you can spare.

With deepest thanks,

Trish

https://gofund.me/d5bdb354

It’s been awhile since I have written anything on my blog and it has prompted various responses from my readers and friends which has caused me a lot of reflection.

I have resolved to write something not because I want to but because I feel I should explain to those who have found my blog useful or could identify with the things I go through and feel.

Here goes.

For some time now my marriage has been breaking down and there have been many things that have taken place over the past several months that has been unbearable at times both physically and emotionally. Which is why I have not written or even told my closest friends and family.

Is this the right way to handle things? Probably not. But it is the only way I know how and what I have always done my whole life. So I am doing the best I can with what I know.

One of the things that has been difficult to come to terms with through all this is that when the chronically ill go through a marriage break down it means so much more than just a broken relationship, the spouse is also a carer, nurse and someone who knows your medical situation better than anyone else in the world.

This is what is happening to me now.

My partner was for many years someone who knew my medications, my doctors, my challenges, my symptoms and all the other things that my diseases have been in my life. Losing this is a very hard thing indeed and is even harder to bear than perhaps losing the love we once shared.

For me to turn to my closest connections and to tell all the things he has done and all that has happened may find my friends and loved ones shocked, hurt and angry but they will not completely understand the role that he has played in my life beyond that of a husband and therefore how hard it is to come to terms with.

I could never have predicted this happening to my husband and I, I had believed that we were a couple that defied the odds of illness and marital break downs. I hoped we would be able to overcome anything given what we have had to deal with. But that isn’t the case.

Does my illness play a role in all this? On a very real level, yes. It can’t not. The person I have become and how much my illnesses changed me and effects me has definitely had a part to play. Even if it in no way excuses many things that he has done. Even now I don’t feel the anger and resentment that many people would tell me that I should.

Perhaps my illnesses has even effected how I cope with this situation and how I cope life in general.

Certainly from one perspective my illness has made me see life very differently and people very differently. Chronics generally have had to accept loneliness and feelings of disconnection for most of their lives with illness. Dealing with things internally and on their own becomes the norm. That’s a large part of why I have been.

Very few of my friends and loved ones can truly comprehend what this is like for me given that each emotional hurdle also has a physical price to pay. My health has completely crumbled and I have also had to contend with the worst flares of my life on top of everything else. It also means that I have never felt more alone and broken in my entire life.

I also have been careful not to give way to self pity, desperation and futility, but it’s an extremely fine line and easy to fall into. Being my own counselor at this time and also navigate the breakdown of a marriage is so hard that I wouldn’t wish it upon anyone.

My self worth and identity has suffered too. When you have life changing illnesses you try very hard to rebuild some sort of identity again but it is never as easy and solid as when you are a healthier person. Thus this current event is very hard on my psyche and has changed how I see myself again and how I see my future.

I am not looking for pity from my readers and followers, as this has never been who I am. But I do hope that the honesty and willingness to share my experiences with fellow Autoimmunes is helpful in someway, even if there are never easy answers or solutions. Knowing that someone may connect and relate has been the main reason I began my blog all those years ago, and still is today.

Trying to, once again, pick up the pieces of my life and pull together something that can help me keep going on is incredibly hard, painful, heartbreaking and, at times, beyond my capacity is one of the hardest things to do as an autoimmune, and it’s only other autoimmunes that can possibly understand what that means.

Feelings of rejection, hurt, disappointment, betrayal, loneliness, fear, confusion and loss are all too familiar for those of us who have debilitating illnesses, but once again I find myself with no choice but to try and face it all as best I can and try to weather the storms of life … again.

Gentle hugs,

Trish