Double Standards

Double Standards

MARCH 14, 2020

Perhaps one of the most distressing things to come out of the recent CoronaVirus pandemic is the enormous double standards that are now becoming clearly visible in society and playing out in front of our very eyes.

I shall explain.

For the past decade I (like many other people with Autoimmune diseases) have been battling serious illnesses and painful disabilities whilst much of the world has shunned us or told us that we are exaggerating our health struggles. We struggle to get medicines, assistance, support and compassion and are often treated with suspicion because our symptoms can be invisible or not easily recognisable by the average person on the street …much like this current virus.

However when there is the slightest chance that healthier people might suffer flu like symptoms and have the slightest possibility of inconvenience or intrusion into their everyday lives we are faced with a human outcry and a world gone mad with panic!

The difference is mystifying.

From scenes like the hordes of people buying up toilet paper and hand sanitizer to those fighting to get groceries and everything in between, it has made many of us with health challenges scratch our heads at the terrible double standards and discrimination which exists in this world today.

For those of us who have struggled with stigma and terrible disability for such a long time it is very hard to take it all in.

The simple truth is that unless health problems are happening, or has even the slightest threat of happening, to a healthier person than they really just don’t care about all the ‘other’ people out there.

Regardless of the fact that ten percent of the population suffer from Autoimmune diseases (when you work out how much 10% of 7 billion people are you get a picture of the numbers involved!) they don’t seem to matter compared to the chances that a healthy person might come in to contact with a virus that most likely won’t effect them for longer than several weeks!

“But this is a mass health risk!” [They] say. Yet it is actually much less likely than the risk to a persons health that Autoimmune diseases are and these disease currently affect one in ten people (mostly women) worldwide.

“But there is a possibly of deaths!” They say. whilst scientists, doctors and the world health Organisation are indeed suggesting that a small percentage of ‘at risk’ people (the sick and the elderly) may face the risk of death this is still far less than the risk of death from Complications of Autoimmune diseases and their treatments that sufferers face every day!

Furthermore, whilst governments are trying to do all they can to help the currently healthy general public deal with this virus and all the questions they may have about it, not one organisation (including hospitals) that already know about me being one of those “at risk” people and whom also know that I take a number of immune suppressing drugs have been in contact to help or assure me. None. Even though statistically I am more likely to die from this virus than all those currently clambering for toilet paper and supplies.

More care is being directed to assisting the mob mentality and assure those healthier people out there than people like me and many other Autoimmunes who are far more at risk. Very few (if any) of those who are genuinely at risk of this virus have been rushing grocery stores, fighting in the shopping malls or trying to cause mass panic which again highlights another big difference between those with illnesses and health challenges and the general public.

Strangely enough people are far more willing to accept the invisible nature of these diseases (viruses) but have been far less willing to accept that many of the painful and difficult symptoms that autoimmune sufferers battle daily are often not always visible to naked eye which suggests that it was never a conceptual barrier to understanding but rather a compassion barrier all along.

Whilst many People have been deeply shocked and angered by being inconvenienced by the COVID, and it’s impact on their daily lives, they are also the same people that will tell Autoimmunes to “get over it…push through it…stop being so dramatic… get a grip… and stop pretending!”

The additional factor that there is currently no cure or vaccine for this virus is behind a lot of the fears and panic for those that have not yet even been affected by it, yet those same people will not understand the worries and pain of those who actually have to live with real health problems and challenge and the real limitations placed on our every day lives … yet we still have had no cures or vaccines for many decades, even centuries, now.

The countdown is now on and all efforts are being made to fund, find cures and develop vaccines for a virus that seems to primarily cause limited fevers, limited pain and a few weeks bed rest for the majority of those who are affected. Billions of dollars are being called upon and offered up by countries the world over but I have not seen this same level of care, funding and awareness being turned towards many other diseases that are truly life changing illnesses and even permanently disabling.

Everyone knows about and have all heard of this virus by now however many of my friends and family still have no knowledge or interest in the diseases that affect every moment of my life and the lives of so many millions more; One on ten people on this earth. How can this possibly be a fair standard of care and interest?

People seem to thrive on fads, novelty, popularity and panic but will quickly turn their backs at the long term problems and issues that exist in healthcare today unless it directly affects or interests them. Healthcare has been a political issue for so many decades now and universal health care has been looked down upon by many political parties the world over …until … yes, you guessed it, it may possibly affects them directly!

After many years now of being on chemo therapy drugs and immune suppressing medications I have long had to isolate myself and be careful where I go and what I expose myself to and I have felt the ridicule and scorn from a number of people out there yet now we are seeing everyday people hiding away and cancelling worldwide and expensive events and erring on the side of caution and somehow they are all being praised for it! Double standards? One group is praised while the other is looked down upon? Why?!

Sometimes the double standards that exist and have been affecting (and hurting) those with Autoimmune diseases are so heartbreaking and cruel that it defies comprehension and reason but hopefully when things like the Corona Virus comes along it can possibly finally illustrate to the average person out there just what it might be like to have to face genuine and real health battles and fears everyday of your life and a gar more uncertain future and prognosis.

Gentle hugs,

Trish

Only those who truly care

I have been writing and sharing information for a decade now about the struggle of so many autoimmunes out there and some of the daily battles they face but I have also learned a very valuable lesson in the process, which is;

Only people who really care about you and want to understand what you are going through will read what you share or want to listen to your struggles.

You will have to face the painful fact that there are those in your life, no matter if they are related, former close friends or even partners, who will not want to know anything and simply want you to just stop talking about your life.

It’s heartbreaking but true.

They will often construct some strange rationale about why they are choosing to remain ignorant like … you are really just depressed, pretending, overacting, lazy, deceitful, moody, or something else along these lines.

The truth is they just don’t want to know and it really does reflect on how much they care about you. That is probably one of the most painful realities of this life.

They are also the ones that won’t even ask how you are doing or coping and will avoid all references to and attempts to understand your life.

If you are faced with these people as a result of your illnesses and health struggles then what can you do?

Well aside from the obvious fact that we must accept what people choose to do and how they choose to act, we can realize that we do still have some choices and power left within us. At least that is how I choose to see the situation.

Even though I didn’t choose this life, and I feel at my body’s mercy, I have chosen to take the attitude that I am at nobody else’s mercy as far as they intend to treat me or speak to me. … Nobody!

I decided some time ago that I no longer have to explain myself to those who don’t respect my fight or struggle. I don’t have to apologize for what these diseases may do or rob me of. I don’t have to talk to or interact with people who show no regard for the person I am and what I must contend with.

I don’t have to be friendly or kind to those who don’t show me the same respect, no matter how few friends I may have left. I don’t have to beg for someone’s tolerance and consideration as though I have done something wrong. I don’t have to push my body and pain limits to show someone I am worthy of their love and/or friendship.

I have found ways to honour the person I am inside despite how people may see me or how much ignorance they choose to be in about my life.

How did I reach this place?

Well it’s been a deep down feeling that has remained steadfast inside me despite some of the cruel and unthinking things I have been dealt. Perhaps my mother did teach me a little bit about accepting yourself? She certainly displayed this in all she did. She never looked down on herself or ever doubted herself for longer than a moment. Her ego always resurfaced and I admired it so much.

I recently found myself replaying in my mind all that I had had to contend with, cope with, manage and suffer in one year and I found myself simply amazed at myself and how I had somehow continued to go on! I contrasted that to many others whom I have known who have not coped with life’s experiences and who have fallen at hurdles that I can only dream of having today!

As I contrasted the different depths of experiences and the stamina and resilience I have shown I began to realize that the person I am now is not a second class citizen or one to be looked down on or disrespected, but rather I consider the person that has endured all these things, and yet kept trying to be there for my loved ones and friends, and all the while managing to achieve some real goals and milestones (even if that has been to do some small things for myself) as being one of the most strongest, kindest, caring, sincere, loving and authentic people there is.

With this in mind I can accept that there are people in the world that will never know what I go through or even care, but that’s okay, it only reflects on them and not me.

The other day I spoke to someone who was telling me some of the difficulties that they encountered as a single mum. I listened and engaged with interest and respect. Despite the fact that I had been sitting the whole time in a leg brace, with a tremor and in terrible pain and with vision problems, I truly wanted to know all about their life. The fact that she didn’t want to know anything about mine will remain a testimony to who she is and not about my value in this world.

I truly hope that my fellow autoimmunes who read this will have a renewed sense of self worth, self belief and self love and to those who care about us enough to want to understand what we go through, I want them to know how much we truly appreciate them. Always.

Gentle hugs,

Trish.

Lost In Time

For many years now I have enjoyed reading about historical findings and developments in the archeological world. I have always enjoyed history and looking back on the way civilization have evolved (or devolved) over time.

I recall standing at the Grand Canyon and looking down upon billions of years being shown with each layer of the rocks and then thinking, there are so many things we can not know that can not be seen inside those layers and is therefore lost in time.

Time itself is such an enormously complex concept and even when we look at the events that have taken place or the changes that we have seen in our own brief time it becomes even more amazing when try stretching those timelines over centuries and even millennium.

Whilst I struggle with the type of timelines that exist in the universe I also admit that I can also struggle with the changes that a mere year or decade can bring. Perhaps it is part of the human condition that we all struggle with issues of time? Perhaps I am not different from everyone else on this planet? I see how elderly people can constantly look back and talk about their youth and I think that in many ways they choose to live in a time long gone and that never to return.

As I approach my 50s (even writing this number seems incredibly strange to me) I realize that I am approached a crossroads where the things that were commonplace in my youth have changed significantly today and the possibilities of further change can be strangle and daunting, despite the fact that I will have to deal with them regardless.

I am considered neither young or old at this time and I am therefore labeled ‘middle aged’. What exactly I am in the middle of can be very confusing at times.

As my husband spoke to me about the costs of things I marveled at how he constantly seems shocked about the price or cost of things today. It’s like a constant assault on his sensibilities. He quickly proclaims what $5 was once worth to him in his early years and how every decade seems to add an extra zero to the cost of something. What was once $10 now costs $100s and to do any small repair or fix around the house will often be a multiple of $1000!

It really is quite shocking for those of us who remember what things used to be. For those that know no better it is simply the way things are. Hence the feeling of being trapped in the middle of the past and the future.

As I thought over these things and then later began talking to my husband again it became very clear to me that there are a lot of people that knew the younger me, the person I was 10 years ago, 20 years ago and maybe even 40 years ago but aside from a hand full of things I realize I am not that person anymore.

Sadly they are simply excavating a body that is long gone and lost in time… Metaphorically speaking.

Very few people know the person I am today and, furthermore, very few people will. No matter how much I write, how much I share and how much someone might assume, they can never truly know and that is simply the reality of it. I belong to a very small percentage of the population whose experiences will never truly be understood or comprehended by the rest of the world.

It is for this reason that I find myself not really describing my day to day or sharing personal details with anyone other than my husband. He is the only person who will ever know the truth of who I am and one day he will be gone too.

Yet I felt a strange comfortableness with this. After nearly a decade of living with these declining and progressing illnesses I find that they have advanced beyond the point of even defining them now. They are incomprehensibly complex now and simply beyond definition. No one else can possibly understand what I am speaking about unless it was happening to them too… but my husband knows.

Today I heard him trying to describe the difficulty that a holiday or trip would present to someone who was painfully ignorant of it all and, worse still, unwilling to comprehend, so my husband just stopped. And that pretty much sums up what happens now. We simply just stop explaining. We have gone quiet forever.

I told him that not only do we struggle to explain to people now but we should also remind ourselves that we don’t have to explain it to people any longer. It’s not our duty. He agreed. This ultimately felt like a huge burden had been lifted.

I told my husband how many years ago I wanted to leave a mark on this world. Some sort of legacy or something that said “I was here…” but now I feel as though that doesn’t really matter to me any longer. It seems like a sad and narcissistic thing human beings try to do and create for themselves. A monument to themselves either through having children or by some other manner.

If my writing remains on the internet or if my personal belongings are found after I am gone it doesn’t really matter to me any longer. The real achievements I feel I have made in my life has been that I have endured these past years and I continue to keep going despite the pain and incredible difficulty of it all.

Despite the losses. Despite the tears. Despite the setbacks. Despite the heartbreaking futility of it all at times… and always in the knowledge that it will slowly but surely worsen.

All of this though is unknown and will be unknowable to the rest of the world. There will be no evidence of it or memory of it in time. Despite any of the businesses, the deals, the ideas, the projects or anything else I may undertake or do in the remainder of my time on this earth, the most amazing achievement in my eyes will be how my husband and I have managed to continue and somehow persist in circumstances that many will never know or be able to comprehend.

When I sit back and think how has this even been possible I realize without a moments hesitation that it has all been possible through love and devotion. I look around me at my husband reading beside me and the furry little companions asleep on my bed and think that even more mysterious and incomprehensible as the depths of time and space are the depths of love which we have created and built, moment by moment.

However, unlike a historian unearthing an old grave site and finding the bones and finery of whomever lived and died there, my greatest achievements and accomplishment will leave no evidence of having ever existing.

Love and commitment is beyond the naked eye and has no form to show it existed and can not be exhumed from the hearts we leave behind when we die. But as I look back on all the things I wanted to do and the things I dreamed of as a child I clearly recall that chief amongst my goals and constant hopes were to find love, companionship and loyalty in another human being and to that end I believe I have reached the highest achievement that I could ever have possibly imagined, regardless of whether it becomes lost in time or never remembered again.

Gentle hugs,

Trish

Why Write?

Sometimes people have asked me why I write and what I am hoping for in my writing…

The first things that I have always wanted everyone to know is that I am not looking for pity or sympathy, I am looking for awareness, equality and justice.

My Type Of Friend

My Type Of Friend

FEBRUARY 20, 2020

The other day I was reading an article on the list of things a real friend can and should do, and aside from one or two things on the list I would be deemed by the writer as a bad friend.

Which got me to thinking.

This ableist writer has no idea of the different types of people out there, or of any other reality other than their own, so they perpetuate this flawed narrative about friendships that can have long lasting effects; Especially for those who have health and physical challenges.

They wrote that a real friend shows up when needed. Great! This means that I can never be a good friend to anyone?! That just feeds my self esteem completely. Not!

The fact is that even though I can’t physically show up for people all the time (in fact, almost never) this should not be a measure of my intrinsic worth.

They wrote that a good friend spends time with you. Many people imagine friends shopping, driving, dining, partying, water skiing etc but nobody imagines two friends sitting and talking or watching a movie at home. This able bodied ideal doesn’t include those who don’t have the strength or abilities to do much more than be companionship!

A good friend, they write, always has positive energy and lifts you up. Sounds like a mechanical hoist and not a real person to me! Some of the best friendships I know have simply been good ears and open hearts. Someone that cares when the world seems to not care. Someone listens to the things we don’t know how to say. Someone they can trust completely.

When I was healthier and busier I was accused of not being emotionally available or too busy with life and now as I am house bound I am no longer enough fun or too boring for many people to consider interesting!

These days my world can revolve around one house, one room or one backyard but I can honestly say that no two days have ever been exactly the same.

I once read that only boring people get bored and therefore by that definition I am not at all boring and don’t think I ever will be. Despite the fact that I must face the same physical challenges over and over, day after day, I have always found new ideas, new projects, new dreams, new thoughts, new feelings and new concepts to explore. Something that these dreadful diseases can never take away.

The only friendships that I have lost were the ones based on physical abilities, friendships that took more than they gave or had very limited ability to grow and survive. Sadly, that was almost all the friendships that I had made in the 30+ years of life.

Ask yourself how many friends you would have if you couldn’t move? If you had no money? If you had nothing to offer but your honesty?

Recently an old friend had travelled from far away and although I assumed that they would not really want to spend time together or that they would find my company difficult, boring or uninteresting, they completely surprised me by spending much of their time with me! Yes. Me.

We sat on my bed mostly, talking, laughing, reminiscing, joking, consoling and simply being two human beings, together. It was wonderful.

I return to the article I read about a good friend being reliable. Well I have very different thoughts on this topic than this writer and I don’t think reliable is simply confined to turning up at events or doing some heavy lifting when moving home! Reliable can mean that no matter what day, time or circumstance you know without hesitation that you can turn to a person who will be there emotionally for you and allow you to be yourself. Completely.

Reliable can mean that no matter what you might be facing there is someone who is there and cares for you as much as they care for themselves. Someone who will be there for the dark, hard, soul crushing hours when the world is too busy or doesn’t care.

I was often this person for many of the friendships of my past. The go to person for pain, loss, struggle, misfortune and disappointment but I didn’t ensure that this was there for me too. A good friend is a two way street.

My closest friend today is someone who fights hard with their diseases and understands the day in and day out, soul crushing battle our physical bodies put us through whilst nurtures the fragile, kind, pained, loving, charming, funny, childlike, intelligent person that resides inside these shells. A friendship based on real love, loyalty, kindness, compassion and honesty. Unlike anything I have had as an able bodied person.

It is almost unfathomable to me that at this stage of my life that I see how the world looks out into the sea of humanity and it always overlooks and dismisses those with illnesses, disability or chronic struggles as being those who are simply beyond repair or the human flotsam and jetsam thrown across life’s shores. No longer wanted and cast aside. Dismissed from the landscape.

However I have come to learn that there are greater treasures which have been throw and tossed aside than can ever be found amongst the ordinary and everyday.

I have found people with endless spirit, forgiveness, creativity, coping, imagination, inspiration, fragility, kindness, true love, sincerity and hope that I have never found in everyday life. It is amongst the pained, the sacrifices, the losses, the hardship and the overlooked that you find real character and humility.

I wish I didn’t have to join the ranks of the struggling to understand what real friendships were but here I am.

As far as those people who who write about friendships and those who espouse authority on human relationships are concerned I can guarantee they know very little of what real friendships are made of and they have never had to make a life out of pain and suffering.

Real friendships are often hard to define, hard to find, and impossible to replace. But when you find one you will never know a truer thing on this earth.

Gentle hugs,

Trish.

My Furry Heart

One of the most important tools to survival with these diseases is having the right support and love with you as you battle the hardest fights that few people will ever appreciate. It is no surprise then that almost all autoimmunes have at least one companion animal, as they are some of the best sources of love and devotion on this planet.

I write this piece in recognition of all the little furry companions that I have ever had in my lifetime, but especially those I have had in my life since becoming deeply ill and disabled.

Their love, devotion, companionship, humour, loyalty, empathy and kindness has been beyond measure. They have given me reason to get up in the morning and reason to keep going year to year, more than anyone else on the planet; with the exception of my husband.

I really don’t know why the Autoimmune soul connects so deeply to our furry children but the answers must surely include the fact that no matter what we do, what we look like or how useless our bodies may feel to us, these furry angels never criticise, judge or stop loving us.

In my pain I have grumbled at them, ignored them and even cried my heart out in front of them but one look in their eyes and I can see that I am still loved by them just as I am; Unlike anyone else on the planet.

I often feel like such a failure as a fur mother because I can not run with them, play with them, exercise with them, groom them or provide them with anything close to a predictable day without the help of others, but from me they will get my last breath and my last penny and I hope that will be enough.

Many of us who are confined to beds or housebound would have very little companionship without the love and devotion of these angels, when almost all human beings have gone and given up on us these little darlings would never leave our side… Perhaps maybe for a moment to look out the window at the postman going past!

Their natures far exceeds that of human beings and I will freely admit that they are far better than I could ever even hope to be. Even when they steal my food or drink my tea!

The way they see the world and look at my husband and I reminds me of how we should all be; inquisitive and genuine.

The one down side to loving these angels is the complete and utter despair of losing them. I don’t think I shall ever overcome the pain of their lose and I don’t think I want to. I close my eyes and recall with absolute clarity each and every fur child I have had and lost. The pain winds it’s way through ever cell in my body. I have never grieved any human being as much as I have grieved these furry angels.

As a child they were my only companions, they were my siblings, they were my confidants. They were my allies and heroes. The period of my life without a companion animal were some of the hardest and loneliest times of my life. It is for this reason that I am adamant that I will never be placed in a care facility where animals are not welcome. Ever.

The current laws about the treatment and recognition of animals are grossly inadequate and I am sickened by a lot of what I see on the internet. However, I am also a member of dozens of animals lovers sites and not a day goes by when I don’t post some picture of my furries on social media and I am sure that all those who know me are well acquainted with my particular brand of animal madness.

My friends are treated to constant pictures or stories of my furries and I am sure even the most loyal friend is well and truly tired of my stories and endless references to my furry tribe. I don’t blame them.

However, like any true animal lover we are unapologetic and will freely admit that we love our furkids more than anything in this world. And it’s true. These are not just expressions or comical statements, I would absolutely die for anyone of them, Much the same way a mother would for her human child. They ARE my children and always will be. The only difference in my eyes is that unlike many other mothers out there I have had to mourn the loss of many of my children and be prepared to take pain of more in my lifetime.

One of my main goals and reasons for living at this point in my life is to be of service and to provide my husband and fur kids with whatever I can for as long as I can. This has seen me go through the hardest of times and the darkest of hours for over a decade now. I shower them with as much love and indulge them as much as I can without hesitation.

Thankfully this is a particular trait or characteristic I shared with my mother and at this time of my life I can recall how we both agreed that little animals give more than they take. I am glad that someone understood me on this level and it came as no surprise to me when she would not go on holidays for fear of leaving her little darlings or when she never left the house without her devoted pup beside her.

I find myself unwilling to entertain the mere idea of going to hospital and leaving my furry ones and even going for a short drive means a car load of furry faces and wagging tails. Even moving towards the door will result in an eruption of barking, crying, tail wagging and panicked dives at the door… which is more than this heart can bear.

My husband has embraced my particular brand of insanity and he is now a card waving member of the furry parent club and has even called home to say hello to the fur kids when out and about. He sleeps with at least three or four fur kids on top of him or curled up beside him and he is a deft hand at retrieving all sorts of objects from mouths and claws. We can even tell who is doing what when we are not in the room!

They have filled my life and renewed my hope more than any job, project, object, career or anything else ever could, and I am more grateful than these few words could ever hope to express. Many people have shaken their heads at me over the years, considered me completely insane and even given up on me as a lost cause when it comes to my love of my fur companions, and animals in general, but I can honestly say, without fear or hesitation, that I couldn’t care less or be less apologetic about anything in my entire life.

If made to choose between someone or something and my fur companions I will choose my fur kids any day, and twice on Sunday. And I encourage anyone else out there who shares a similar disposition to come out and let your flag fly unashamedly. It is only when we do this that animal recognition and rights can be advanced and the world can open its eyes more and more to what an important role they play to human beings, especially those of us who have lost so much through illness and disease.

Companion animals have stepped in where many people have abandoned us and for that reason they are true heroes and always will be.

Gentle hugs,

Trish

By Choice.

There are quite a few people whom I have long given up trying to explain some important concepts because of their inability to understand and, more importantly, their inability to put aside their own agendas in an effort to better understand me or my life.

To those people I simply just nod and say no more. It really is no longer worth my time, effort and any side effects that result.

To the rest of the world I can but try to explain as best I can in the spirit of understanding and in the hope of educating others to better respect and empathise.

If you ask those of us with these diseases what some of the hardest realities to accept are I feel quite certain that chief amongst them are the loss of control of our bodies and the loss of choice in what we can and can’t do. At no time is this more profound than when it pertains to events and socialising.

I have missed out on so many special and important events in the past decade or more simply because I have not had the health or strength to do so. Whilst I freely acknowledge how difficult that must be to the person that I have had to cancel, postpone or turn down it is by far more devastating on me. I say this without malice, selfishness or intended slight.

Being the one who does not get to share a happy moment, event or make a special memory is truly and utterly heartbreaking!

As I look back on the past decade there are so many occasions that I have missed out on that I try not to think about it too often to do so can cause the most intense pain imaginable.

Missing out on weddings, birthdays, graduations, births and celebrations is a far greater loss to me than it is to the person who will still have a happy and wonderful time regardless of whether I am there or not. Therefore it is simply cruel to use such a thing to try and make me feel worse about not attending. It is for this reason that I have always not understood people’s reactions and anger when I have not been able to attend.

I have been told that “… it must be your choice…” not to attend and that ultimately it is because I “… didn’t really want to go…” that I have canceled or declined. I simply won’t respond to these accusations anymore to as it shows the complete lack of understanding of the situation and a lack of perspective.

There is a huge part of me, the inner me, the once able me, who would dearly love to travel, dance, rejoice, celebrate and be present at so many things that now suffers as a direct result of losing the ability to choose or have command of my own body and it’s capabilities.

I can no longer rely on or predict what this shell of a body can do, or will do, and this has led to feelings of ultimate betrayal and inner suffering the likes that most people can not even Fathom!

As I look back on cancelled tickets, lost money, unrefundable events, missed friendships, hurt loved ones and deep disappointments I can no longer even calculate the emotional toll that they have.

I have often called upon my husband to be the one to call and cancel as it has become an all too familiar pain for me and I simply can no longer bring myself to do it. Is this a cop out? Yes, Probably But it is a very justified one.

As a result I must keep reminding myself that I can only live for today and in the moment and this is the only way my mind and heart can find some peace in this life. Trying to plan for the future can be a disaster waiting to happen and has the potential to throw me once again into despair.

Reminding myself that I can only do what I can and by assuring myself that “… I am enough…” has been my mantra for over a decade.

Do I wish things were different? Absolutely! Do I wish my body was more reliable? Every day! Have I really tried to do things or plan things? Indeed! But nothing (nothing!) removes the fact that what will happen is beyond my control or predictable, no matter how much I may want something to happen.

As I result I have not been on holiday for nearly a decade, I haven’t had a birthday party or gone out for dinner in years. The last few years have seen health challenges increase so even the shortest outing in the car can be taxing. This does not make for many joyous events or outings and it can feel incredibly heavy and daunting.

A quick look at social media and I am inundated with concerts, weddings, birthdays and holidays that I would dearly love to have for myself too. I have had to turn away or develop a completely altruistic outlook on the world and be happy for everyone else or perish in the pain and torment.

The able bodied world is so steeped in the ideals of free choice and personal control that it is almost pointless trying to suggest otherwise, particularly if they are deeply committed to their narrow view of the world, and attempts to explain anything that contradicts them is quickly rejected. Thus I have had to develop extremely thick skin and robust principles of my own. Today those principles are best described as ” ..I can not invest in the assumptions and appraisals that others make of my life, my abilities and who I am, but rather become deeply committed and confident to my own truth, strengths and self belief…”.

Ultimately when it comes down to the freedom of choice than I must always choose to believe in me.

Gentle hugs,

Trish

Guest Work

Another painful part about this life is the difficulty trying to resolve entertaining people at home and yet struggling to do so; especially those wonderful people I would like to see and be around.

Over the past decade the number of visitors and guests we have had in our home have declined considerably such that it is rare to see anyone come to our home aside from the postman and door to door advertisers.

It is hard to explain to people, especially people that you love, that most days it is a real struggle to even move let alone entertain friends and loved ones. I often don’t want to be seen at my worst because of the embarrassment I feel about many of the physical issues I live with. I know I shouldn’t and that only makes me feel worse because I do.

It would be wonderful if people who visited me were instantly comfortable enough that they could fix themselves a drink, lounge around beside me, and look after themselves whilst we spent some precious time together but it is highly unlikely that people will do this, and I don’t blame them at all. However I often don’t have the strength or ability to fetch refreshments, keep conversations lively and stimulating, and entertain people as I would dearly like to.

The truth is that with these illnesses you either have a small group of amazing people who will make themselves at home and become in tune to your physical abilities or you live a life of isolation and loneliness.

Today I have a handful of people whom I can rely upon to feel completely at ease and have this amazing ability to gauge “the room” and know exactly when to chat at length or cut short their visit and let me rest. They are not shocked by tremors, tears, aches, blindness, facial droop, slurred speech, fatigue or general malaise. They don’t care if I am in my best dress or in my pyjamas. They don’t care if I talk a little or if I just listen. And they don’t care if we are sitting in the garden or holding hands while I lay in my bed.

Those few people are just pure gold to me.

There is no handbook whereby people can learn how to visit with an autoimmune friend and so I never blame people for feeling awkward and opting out of visiting altogether. I think it’s often best to not visit if you are not really committed to understanding their situation a little better. For the purposes of helping both parties I thought I might write down a few handy tips and suggestions.

1. Call first. This is essential. There is no point in dropping in on a chronically ill friend/loved one unless you both want to be disappointed. Call first and be comfortable with a “sorry, not now” response. Better still, text the person so they don’t have to speak if they are not up to talking or if they feel awkward about saying no. The truth is that your chronically ill friend really does miss you and it hurts them to have to say no, I guarantee it!

2. Intend on keeping your visit short unless your friend can manage more time with you. It is very hard for healthy people to understand that speaking, listening, concentrating and participating uses a lot of energy and this is something that most chronically ill people have very little of. Almost none. After half an hour of Interacting it can start to take a real toll on the person and pain and fatigue can start to overrun them.

3. Be comfortable at making yourself at home. Often it is beyond the abilities of the ill person to fetch and carry drinks, snacks and showing people around, therefore it is so important to just try to make yourself at home as much as possible and be self catering. Your sick friend will be immensely appreciative; more than you can ever know.

4. Don’t feel as though you need to talk about illness or anything health related. We live all our lives with these challenges and struggles and for a short time we would like a break from discussing them. A polite “how are you feeling today?” Is sufficient and a good way to gauge the time you may have together. I for one hate retelling my health struggle over and over so I much prefer to just not think about it for awhile and just hear all about another persons reality and news. That’s my personal preference anyway.

4. Don’t make future plans with the person as often times they can become things that can break the persons heart if health is not going their way on the day. I can’t tell you how many times I cried from breaking plans with somebody and then took months to get over the pain of it. Such things can trigger depression and feelings of inadequacy in a second. Simply say something like … “it would be nice to go to the movies one day when you are up to it,” … this is more likely to make the person feel included and valued.

5. Check in regularly to see if the person is coping during the visit. A quick “are you feeling tired?” Is the best way to gauge how your visit is going. If your friend says “yes, I do feel tired now” don’t take this personally or consider it a rejection. Half an hour with you is probably a treasure that your friend will not forget in the days (months) to come and you may even be what keeps them going through the most painful times in their struggle. It may be just a visit to you but it can mean the world to them.

6. Learn to be completely honest with your ill friend. Speak honestly and openly about your friendship, your challenges, your lack of understanding, your life, anything. Openness is the tool that will ultimately help you navigate these times. Illnesses which change a persons life forever are not for the faint hearted and take a lot of courage and honesty to get through. I have found that I must always be honest and I can no longer tippy toe around subjects or issues anymore. I simply don’t have the strength or energy. This can either solidify a friendship or break it depending on the bonds you share and only time will tell you both which way it will go. I, personally, have lost a lot of friendships and relationships that I thought were stronger and deeper but I have learned over time to simply let it go and try to find peace at each stage.

7. Try to find the value in your chronically ill friends other abilities other than their physical ones. Constantly needing your friend to be physical, do things for you, go places, and measuring them against a physical standard is a painful and cruel thing to do to someone with disability and struggles. It is kinder to simply let the relationship dissolve than to require things they can not give anymore. As a society we tend to overlook the other aspects of a person outside of their physical abilities or attributes and illness hold a microscope to this very quickly. Friendships with the chronically ill must be based on deeper things like personality, empathy, feelings and appreciation beyond what they can or can not do.

8. Remember that a visit with a friend can mean they will need days to recover. Every little action and interaction has a physical toll. Every action. Every day. If your chronically ill friend or loved one is prepared to hurt, suffer or struggle just so they can spend time with you please, please, please see this as the great honour and act of love that it is. You simply can not put a price on this kind of gesture. It is worth more than a hundred visits with healthier friends.

9. There is nothing better than laying in bed with a friend and watching a movie or documentary with someone when you are chronically ill. If this is your idea of heaven too then make friends with an autoimmune fighter and you will have a friend for life.

10. Even if you don’t see your friend very much anymore always remember that they are missing you as much as you are missing them too. Sometimes more.

I hope these simple suggestions will be helpful the next time you have a chance to visit with your chronically ill friend and I wish someone had told my friends and loved ones these things over the past decade or more.

It is hard to have your friendships and relationships change when you have a chronic illness and it is always very hard losing friends but it is worth more than words can say to have the right kind of friendships that will last through all the ups and downs and make the struggle a little easier.

Gentle hugs,

Trish

Reaching Out

As a child in the 70s, and born into a rural family, I was raised to believe that if you were feeling sad or upset due then you needed to go off alone and ‘deal with it’. My parents would either ignore me or quarantine me until I was able to act in a way that they approved of and made them feel comfortable; with minimal disruption to their lives.

I was also taught that I had to deal with my own problems and concerns and not to ‘bother‘ other people. Visibly showing pain, worry, sadness or any emotion was not acceptable and seen as a sign of weakness therefore I had to do such things behind closed doors.

For those who share a similar upbringing as mine we would tend to grow up and internalize all the pain and stressors in life because we are taught that ‘sharing‘ or asking for support is weak, inappropriate and a sign of failure.

It is little wonder that so many of my generation can drown in stress and depression, and as adults we have struggled to ever share our burdens or ask for help, even from those closest to us.

Men were quite susceptible to these difficulties as society has long told males that it is unmanly to seek help or to confide in others. This has caused so many difficulties with intimacy and relationships that many just do not survive this hurdle.

However, it has been my long held belief that when we are struggling, or when we have pain and emotions which are hard to deal with, that is exactly the time that our loved ones need to be present in our lives and by our sides. We need to know that support is there when we need it most and it is not going to walk away or dessert us.

No child should ever have to feel alone in pain or should ever feel that their struggles are a sign of weakness or failure. Those children grow up to be struggling adults with a string of broken or superficial relationships in their wake.

As an adult I have been in far too many relationships where one or both of us struggled to reach out and be a support to the other during hard times, and this was a major factor in the ultimate demise of those relationships.

Speaking for myself I just didn’t have the experience and practice of speaking out and sharing early on in life. I had been taught to build walls and barriers to my pain and emotions and I learned not to trust anyone or rely on anyone.

The message that I was not good enough to help or to support became the backdrop of my relationships and helped me choose partners that were not worthy of me.

If we can’t trust our family with our emotional support when we are growing up then who can we trust? If we can’t rely on our primary care givers as children then who can we rely on as adults?

Having our emotional needs shunned at an early age can also lead to fear of rejection and depression later in life. These are very dangerous burdens to carry around through life.

Many of my generation still struggle with these deep seated issues and it is a very hard road to travel in your adult life, and even harder to try and correct.

But it can be done.

The relationship I have now, despite the fact that I have health challenges, has been tested and I have forced myself to open up and talk about my struggles. I required my partner to do the same so that we were prepared to take the same risks and be the same refuge/shelter for each other… despite being incredibly hard it has also turned out to be incredibly rewarding.

Taking these emotional risks has enabled us to take strides forward and also helps us navigate the difficulties that life constantly throws our way. A true partnership.

It seems strange to me now that this is what I have always looked for but I didn’t realize how truly life changing it could be. I have often said that I never needed a perfect partner/ spouse in life but I did need someone I could open up to and share anything with, and they have that from me in return.

Reaching out is the hardest thing I have ever had to learn how to do and it is far harder than living with these diseases I have but I believe it is probably the most important thing I may ever do in my life.

Gentle hugs,

Trish

Where Are They Now?

Where Are They Now?

One of the hardest realities to come to terms with as a chronically ill person is the decline and disappearance of people from your life, especially those whom you may have been there for and helped in the past with love, support and money.

I discussed this with a friend just recently in a very sincere and meaningful way in order to try and make sense of it all.

Being an empathic person has always predisposed me to wanting to help others whenever and however I can. Whether they were friends, family or strangers, I always wanted to make a positive difference in some way. Perhaps I didn’t always choose the right way of helping, and I am certainly not suggesting that I am some sort of saint either. However I do believe that I have endeavored to be a kind and generous person in the course of my lifetime.

I also believe that my kindness and generosity developed from out of my own challenges and struggles and my understanding of what it is like to endure difficulties on my own. Kindness can be such a rare commodity when you are going through hard times of your own. Thus I began to want to be one of those people that offered a safe place during the storms of life.

It didn’t always go so well despite my best intentions.

Regardless though I found myself somehow finding my feet again after a difficult encounter or being taken advantage of, determined to believe that there would be some people that would prove their worthiness one day and justify my hopes and efforts.

I don’t believe I ever did anything with the expectation of being owed some kind of debt by the person. I didn’t want money or praise in return. I only hoped that my selfless acts might one day lead to good karma and the sense that I lived a good life and helped my fellow man in times of need. I hoped that it would somehow contribute to the overall betterment of the world and society.

I have to admit that I feel quite disappointed and disillusioned today.

As I look back and remember the many times I have given my time, heart, feelings, money, efforts, assistance and strength to many of the people in my life I am forced to ask myself the hardest question of all … where are they now?

The simple truth is that they are not in my life now and they don’t bother to check in or be a shoulder for me in my own times of need… There isn’t even the occasional greeting or casual enquiry from any of them.

Did my efforts mean so little in the grand scheme of things? It really does seem so.

As I look over the things of the past I am determined to learn from these experiences and that is the only reason I think of them now. I don’t intend to become older and bitter by these experiences but I do hope to become wiser and, hopefully, more at peace.

As I spoke to my friend she agreed emphatically with much of what I had said and had had some similar experiences of her own.

This actually made me feel even more disappointed.

I said to my friend that I didn’t see myself as having a finite amount of love, kindness, care and empathy or that I was ultimately going to run out of these resources; despite having given so much of these things away in the past. I knew on a very real level that their actions would not rob me of these things from my life entirely. Even the large amounts of money that I had given in the past did not mean that I was waiting for a reimbursement or Cheque to appear magically in the mail.

Money had always seemed to me like such a transient and unstable commodity during a lifetime anyway because we can never tell what is waiting just around the corner. It is also true that money can’t buy you the type of things we truly need in life like love, respect and acceptance.

I shared with her the times that my acts of charity and setting up charitable groups had even resulted in ridicule and betrayal. Not at all the outcome I could have ever imagined!

So what was to be learned and what should I take away from all of this? …because to me learning and wisdom are the most important outcomes of all.

I have to admit that today I have become far more introverted than ever and have withdrawn myself to a great extent. I am even more self reliant than I ever was and I am determined to not go through the pain and disappointments of the past. Although I am comfortable with the concept that life is struggle and that this truly is the underlying message of the human experience, but I also believe that we owe it to ourselves to not make the struggles even harder for ourselves so we must endeavor to learn the lessons as we travel through our lives.

Today I find that I have had to build higher boundaries around my precious and loving resources. My husband has been a grounding and guiding force in my life and has shown me how to stem my generous impulses, which in itself is an inner battle to override my own nature. I rely on him as a sounding board for so many of my decisions now as he has had to be there so many times in the past to help pick up the painful pieces and heal the emotional scars.

One of the largest breakthroughs that I made in comprehending all of these lessons is when I realized that not everyone has the heart, feelings, depth, kindness or spirit as I do and therefore to assume that they will treasure or appreciate the things I do is an incredibly large mistake and illogical and incredibly naive on my part.

Assuming that people are as loyal and loving as me may even be narcissistic in some way? … I don’t know.

Alternatively I have had to learn how to love myself and use that generosity and kindness on myself in positive ways and protect myself far more.

Learning how to do that at this stage of my life, whilst battling some of the most painful and frightening physical challenges, has been incredibly difficult and there are many days I wonder if I can ever really do it. Whenever I find myself asking if I can actually achieve this goal I am also reminded that I simply have no choice.

At this point on my life I have come to realize that there are a staggering amount of things in life that we have absolutely no choice over, despite all the positivist slogans out there insisting that we are in control of everything. Learning how to live more peaceful seems to be one of the things that we do have some choices and control over.

My aim from here on is not to carry around sadness, hurt, confusion and pain for all those who have disappointed me and disrespected what I have done, but rather the goal now is to let go of all of that baggage, release the confusion, lean into recognizing the depth I have and the soul I possess (despite it all), being proud of all that I have endured and, finally, being inspired to learn from the past.

I am truly, deeply and forever grateful for those handful of people who are in my life now and who continue to stand by me, no matter what. Those that have lost me or walked away could never truly have really valued me in the first place, and therefore I see myself as ultimately far better off.

Gentle hugs,

Trish