What I Have Learned From A Bed

As much as I still hate it, the fact is that my health has confined me to my bed more often than I could ever have imagined. Even after all these years I am still the worlds worst at being confined to a bedroom, and I am not proud to admit that I do not make it easy on myself or my partner. It is my sincere hope that I will become better or make a peace with it eventually.

Being confined to a bed is not the cozy, peaceful, fun, lazy or self indulgent image that many healthier people like to imagine. Far from it. I suspect that it is what they imagine because that is what they know. I only wish that it was how bed confinement was. Truly. But it’s not at all like that for me.

When I find myself confined to the bed and surrounded by the four walls of my bedroom it doesn’t take long for my spirits to drop and my emotions to become unstable. Pure frustration is added to the pain and suffering I am already going through. It makes for a truly difficult time for me and my partner.

When I find myself confined to a bed I tend to do two things a lot; suffering and thinking. When I am not struggling with the pain of the circumstances I will spend a lot of time in deep thought. This has proven to be my greatest achievement and my darkest demon.

I can spend far too much time thinking backwards and remembering things I once could do and things that I wish I could still do now. It’s the worst torture imaginable! I have learned that it is best to distract myself when I feel myself sliding too deeply into the ‘what was‘ or it will only hurt me emotionally; but it is so easy to do!

Recently I remembered myself back in my career and the countless hours I had spent doing planning, meetings and managing, all from my confines of my desk. I worked very long hours and, more often than not, I would work 7 days a week. I can remember I rarely had time for entertainment and relaxation because of the workload and my responsibilities at the time. This got me thinking about my current circumstances and doing some deeper soul searching.

I have recently been training myself to see these current times as being more like my new job and my new working environment. Instead of spending many hours at a desk and computer in the middle of the city I am now shackled to my bed and room working every bit as hard, if not harder! This has become my current workspace. Every day that I would spend at my desk I endeavored to make the most of my time and the best use of my skills. That was my focus then and it is still my focus now. This is what I try to do everyday with every little bit of my strength and ability.

In this sense I have always asked myself what things can I do and how can I make the most of my time, and ultimately my life. When I am crippled in pain or fighting some other debilitating symptoms I am invariably thinking and planning what I can do next. I am writing my blog in my mind or planning the next grocery list or project. I am even be scheduling visits to the vet or listing all the things that need to be done around the home.

As well as planning I am also problem solving issues or difficulties that my partner and I may be facing in our lives and with the outside world. The problem solving and creating that I once did for other companies I now do for us from my home office. My bed.

When physically able to I will fold washing, iron, peal vegetables, order groceries online, design home renovations, write business plans and develop ideas and suggestions which could make our lives better, more secure or more livable.

I have never believed that it has never stopped being my job to contribute in any way I can.

When I look at my time spent in bed as being doing my job to aid my body, and yet still do whatever I can to aid our lives, I feel less distressed when I have to face days, weeks or months without being able to leave my room. In fact it’s the only way I can bear it!

From the confines of this bed I have managed to do, and to organize, things that I could never have dreamed possible and to achieve things that have even surprised myself. In fact even bedridden I am working harder than I ever worked before. It’s an endless job with never ending challenges and I can never know when I will ever get a break. Ever.

If I am not writhing in pain and doing what I can to help this struggling body I am doing all I can to help my family, my relationship, my loved ones, my friends, my autoimmune community and myself.

I know many people will never truly understand what I have described, and it is not easy to explain to people in general, but living outside the norm is never an easy thing to do and many struggle to do so.

My job is not an easy one, it’s the hardest thing there is in the world to do, but I have always tried to do the best job I can every day.

Gentle hugs,

Trish

Below The Surface

A common misnomer is that chronically ill people lead boring, easy, relaxed, idle and dull lives. I guess to the untrained and uninitiated it will certainly be a life beyond their comprehension but it is never idle.

It may seem dull that we no longer do many of the fun things that able bodied people can do, or as often, but it doesn’t mean that all of life’s inspirations, emotions, struggles and complexities magically disappear from us. The reality is that we now have to find different ways to do what everyone else takes for granted.

To give this a little more context I will use my own journey as an example. Over a decade ago things became increasingly difficult health wise and seemingly overnight I found myself blind in one eye, weak, numb, unable to move, balance gone and suffering excruciating joint pain, however I was still a project manager for a multinational I.T. Company and I had many daily tasks to perform. I simply had to try and manage them as best I could and from the confines of my bed and I endeavored to do this for as long as I physically could.

Each morning began at 6 am with preparations, status updates and then on to calls all over the world and meetings with staff and customers.

For years I oversaw international projects and roll outs from my home base and since my husband and I were strangers to the city we were now living in, we had to do everything on our own. Cooking, cleaning, shopping, working, caring for our family, and everything else in between, these things still had to be done. There was never a dull moment and still hasn’t been to this very day!

As the years have passed by there has never been a day in which I (or my husband) have idly sat by and squandered the hours away. The reality is that somehow you have to make room for everything whilst still suffering and struggling.

Sadly this means it has been many many years since either of us have been on holiday and the opportunities to frolic and laze are few and far between. Despite what impression that people have of the chronically ill or disabled the reality is for people like us that we never have days off. Ever.

We are always working hard at coping, surviving, maintaining and trying to make the most out of every moment of our lives.

I often find myself unable to, and unwilling to, go into details of how we carry out our lives because it always seems that to most people (even those who should know better) it is beyond their experiences and comprehension.

I have rarely explained the daily challenges and routines we face, or how they can often become even more painful or complicated in an instant, because it is very rarely truly understood. This has always caused us a great deal of communication obstacles with the outside world and is precisely why we don’t really tell anyone what we have faced together over the years. It can feel like trying to explain Greek philosophy to a newborn giraffe.

I don’t bother detailing how we have tried to order and stabilize our lives and yet somehow still managed to renovate our home, build charities, start businesses and care for rescued animals… all whilst facing excruciating daily pain and hurdles. Sometimes I don’t even understand how we have managed so far!

But these are the types of reality that many autoimmune sufferers face all day everyday and very few people have any idea of what it is like, and many more don’t want to know.

There are so many individuals and families out there who are struggling with these diseases and have somehow still managing circumstances that would boggle the mind of the most skilled and talented entrepreneur!

My husband and I have amazed even ourselves when we look back and realize the skills that we have had to acquire, the strength that we have had to find, the perseverance we have clung to, the patience we have exercised, the determination we cultivated and the love we continue to show in our daily battles. I could never have imagined such things were ever possible and achievable by two individuals. Yet hundreds of millions of people around the world have had to find a way, we don’t have a choice.

Today was a real moment of reflection as I have looked back on all that my husband and I have faced and accomplished and I am truly lost for words. We have worked so hard to continue our daily lives and create a strong future for ourselves without anyone ever really knowing all that we have done and all we continue to do.

From the outside it may indeed look like we have boring, house bound lives that most people may consider dull and uninteresting but just like someone standing on a beach and looking out to sea, they can never truly comprehend all that lies beneath the surface of these mighty oceans and all the mysterious that lie within.

One thing for sure though, it is never dull!

Gentle hugs,

Trish

Change Of Life

One of the things I could never have imagined as being a product of health challenges and disabilities is the way in which I handle day to day inconveniences and dramas. I have so much more resilience and ability to prioritize issues that it amazes even me.

Years ago I would worry about what people thought about me or what they said to me. Petty things that people said to me would see me investing far too much time and emotions. I worked hard to please people and I was often in the most destructive relationship, but not anymore.

Today the things that people, even people I consider friends or closer, might say or do to cause annoyance or drama simply doesn’t make it through my emotional filter anymore. At most it might give me cause to shake my head at the trivial nature of those actions but then I quickly refocus.

How is it possible?

Over the past years it has become profoundly clear to me that many of the actions and emotions out there are just not worthy of my time or investment. It only serves to sadden or irritate and generally has no real purpose or long term value. I now value more meaningful and useful exchanges so I set a high filter for most of the minutia out there.

I no longer need a large group of social interactions or the approval of many people so I can take much more from life on my own terms. I could never have guessed that illness would offer me this type of remittance as it is not something you could imagine from such difficult circumstances.

When you are placed in these unique circumstances and under such extreme difficulties you can never see everyday things and experience as you once did and the way that many others still see them.

For example many people my age are still trying very hard to appear in control, appear well off, appear smarter, appear more successful and appear better looking than their friends, relatives and peers. They can still be invested in appearing this way, and in competition with others around them, regardless of their age and circumstances. These things no longer have such meaning once you have faced with real life challenges.

Illness redefines how you see yourself and how you see everything around you forever.

Although I would never have wanted to obtain these attitudes, skills and knowledge through these painful and awful diseases but I am amazed by how much I have learned and gained.

Comments on social media, passing remarks from strangers, social interactions and phone conversations are no longer processed the same way anymore, and they never will be. I don’t see the daily problems and issues the same as most people anymore because I compare them to a completely different set of criteria than most people do. I view everything through an entirely different filter now and I can never go back.

What people think of me and how they value me has become meaningless compared to how I will battle on through each day and how I will manage some of the hardest challenges most people will ever face, daily.

I also see and feel injustices and hardships in much deeper ways than I once did. I empathize with other people’s real pain and loss profoundly and have enormous respect for those facing such challenges, even if I am not close to them personally. I have also put real effort and action into the things I believe in rather than simply offer lip service or try to look concerned.

Sadly, it can easily draw upon too much of my limited resources when I put myself to helping and aiding people, and causes, that I feel deeply for. Because of the price I will pay I am forced to choose carefully what things I commit to and who I put myself to pain for. However I don’t believe I could be my true self without trying to give my best, and all that I can, to those things I deeply care about.

It will always be overlooked the real toll and sacrifice that the disabled and health challenged endure when giving their resources and emotions to people and causes, therefore we have to form a thick skin to people’s comments, expectations and actions. Although this is never fully understood by the outside world. For example people will happily say my kids come first with fear of backlash but the disabled or the health challenged are never given the same respect for choosing to care for their disability or their precious peace.

I look back at all the things I have undertaken and tried to do for others since I have been so ill and I remember clearly the price I have paid. Whether it was fatigue, pain, loss of vision and balance, muscle strain, spasticity or any number of other physical challenges, they are all the real costs to the quality of my life (and my partners) even if it is never known to anyone else. I have had to endure the ignorance and cruelty of some who never appreciated the sacrifices but I have used those times as a lesson in my future endeavors.

I never give of myself for any other reason other than to help in some way so I have never told anyone of the pain I may have endured, in this way I know I am always doing things for the right reasons. It is also how I retain my right to say no when I must. There will always be more things that I wish I could do to help than I will ever be able to do.

The changes in life experienced by me (and many like me) are far more profound than most people will ever have to face or can ever truly comprehend but I am grateful for the ability to see through life and through much of the noise and unimportant everyday comments (and actions). Truthfully I would never want to lose this precious and life changing knowledge even though it has come at such a terrible cost.

Even today I could quickly reflect on dozens of comments, actions, thoughtless words or annoying behaviors that I have encountered and yet I can quickly sift through them all to recognize what is truly important and what will add to my life and what is completely and ultimately meaningless.

One of the biggest misconceptions that I have discovered since entering this world of autoimmune diseases and disabilities is that most able bodied people will often ostracize sufferers fearing that they will ask too much or be needy of help and assistance from able bodied and healthier people when the reality is the complete opposite. I have worked hard over the past decade to never impose or ask anything of anyone and to always do for myself!

Many sufferers are proud and amazing people who have clawed our way through the most painful and soul destroying times of life and had to do so much on our own and for ourselves. It becomes a way of life and few people really know the battles, pains, anguish and fears that we have come to face to face with … and it is truly life changing!

It is for this reason we don’t see the world, the petty words, the competitive behaviors and the cruel and thoughtless actions of others in the same way we once did because we are always facing far more important challenges every moment of the day.

Gentle hugs,

Trish

Invisible (A Poem)

Invisible

(Poem by Trish Dyne)

As I sat aching and numb with my tears

My eyes showing pain

after all of these years

What will happen? What lies ahead?

My heart beating loudly with the fears in my head

Will I recover? Is my life at an end?

She touched my hand gently

and then softly she said

What lies ahead we can’t know for sure

We don’t have answers

and we don’t have cures.

The pain can be endless,

so much will be changed.

But as you can see

there are worse things than pain.

some diseases are accepted

But with some it’s quite clear

With ‘these’ awful diseases

you will slowly disappear

In time you are forgotten

and in time you will see

That all you have worked for

or may have wanted to be

May be taken from you,

although no one may know

How painful it is

Because you can’t let it show

To talk about invisible diseases today

Is seen as lying and failure,

So you may be forced to go away

there is no medicine to help ‘others’

be kinder or try

To accept that there are things

that can’t be seen with the eye

And while there are many questions

one thing remains true

It’s not the disease that is invisible

Its your suffering.

It’s you.

This Friend Of Mine…

A friend of mine is currently supporting their family member through a very difficult health time, which also includes being newly diagnosed with an autoimmune disease. He is doing an amazing job but he is filled with the worries and questions that many good supportive family members have for their loved ones.

I would dearly like to provide all the answers he desperately seeks but there are so many challenges in doing so that I feel as though my help may be proving just as difficult as the disease/diagnosis itself.

Here are some of the hurdles to helping this dear friend.

Firstly, and mostly importantly, is the fact that I am not a doctor and so in any case of someone struggling with symptoms and terrible challenges, although I may identify deeply with the person, I can never assume the role of a doctor. Although I may relate to many of the experiences that someone else is going through ultimately I know that my advice is not the as important as that of a certified doctor.

Secondly, no matter how many autoimmune fighters you will speak to (assuming that you would try) you would discover we all have our own unique variations on our symptoms, our circumstances, our treatments, our results, our disease progression, our attitudes, our supports and our coping. There are no two sufferers who have exactly the same history and life with their autoimmune disease/s. None.

What this means can be very difficult to understand for the casual observer and for sufferers alike as we dearly want to find someone we whom we identify with completely, someone we can learn from and someone that we can share all our struggles with. Over the years I have learned to accept that whilst I may never find someone with the same history, circumstances, journey and diagnosis as me, I am grateful for anyone who can truly empathize with me and understand the struggles we both share.

This, however, isn’t always exactly what the newly diagnosed, or their support network, want to hear. They will often want definitive answers and someone to tell them what to do and how to do it.

Because each sufferer is unique we have to find out early on and for ourselves how to follow our own inner voice and to prioritize what we need and when we need it. Often this can be incredibly overwhelming and conflicting but that is the essence of these diseases in a nutshell. There never seems to be simple answers or easy choices. Ever.

Often we simply do what we have to do and not what we would like to do. This is the daily struggle with Autoimmune diseases.

Like first time parents who are now in charge of a screaming, demanding, challenging and life long commitment, autoimmune sufferers are in for the long haul. Whilst we all start out with the best intentions and the desire to be the poster child for autoimmune disease fighters, it can quickly become evident that it isn’t that easy and the reality can be agonizingly different from the picture in our minds.

Using the same analogy there will be times that you feel overwhelmed and close to giving up but there will also be times when you are proud of your parenting (coping) skills and feel like you have made monumental strides in your progress. Only time will ever tell.

Whilst my friend and his family member (the autoimmune sufferer) are starting out at the beginning I can’t help but feel so deeply for them about what lays ahead. But I also know that there is a great amount that I can’t prepare them for and they will need to find out for themselves.

The hardest part for so many sufferers is that it always comes down to ‘watchful waiting‘ with these diseases. How long will this last? Why is this happening? When will this pain stop? What will happen to my career now? What will happen to my family now? What will happen to my life now? Is this going to last forever? Is this the new me? What medications are going to help me? What is to become of me?… the hardest part of all this is that the answers are always the same in that only time will can ever answer the millions of questions we have.

Time.

Diseases like autoimmune illnesses take time from their sufferers and time is always our most precious commodity in life. We have to learn to give over control and time to these diseases and learn to live inside the unknown and never knowing what tomorrow will give.

Perhaps the only things I can really offer my friend and his family member at this difficult time is my patience, my empathy and the reassurance that, no matter whatever happens in the future, they can make it through with lots of love, endless commitment to each other and always believing in themselves.

Gentle hugs,

Trish

Emotionally Vulnerable

I have given much though to this over many years and I am still surprised by how chronic illnesses and health struggles can make us so emotionally vulnerable.

I seem to feel everything so much more deeply since becoming ill that I have had to work hard to build up barriers in order to handle things better. It’s truly difficult to describe how this feels to most people, and sometimes it’s hard to accept myself. Conversely I am actually pleased by how being emotionally open has helped my marriage (and some of my closer friendships). It has given me the ability to offer so much more, and for those precious few, they are able to truly know and see me.

However it is not without its difficulties.

It feels as though my naturally empathic nature had been dialed up a million fold, bought on by the years of pain and struggle that I (and my husband) have had to endure. People’s actions and attitudes can leave deep impressions on my emotional skin now. Enough of these wounds and the skin becomes very inflamed. This is not easy to deal with when it becomes so pained so it is much wiser to try and protect the emotional sides of us more vigilantly.

Nowadays I am very careful who “I let in” and who I offer my precious resources to. I have to be because I know that I am weakened vessel now, with a very low battery life. So I want to give my best to those that appreciate my efforts and I also want to give some to myself; that’s always much harder.

It only takes approximately 10 minutes on social media or talking to some stranger on the phone to make me feel exhausted and depleted emotionally. I remember life twenty years ago and it seemed so completely different in my memory. I do miss some of those strengths of yesterday but today is a new day.

I believe that being ill and feeling so helpless physically has a huge toll on our emotional well being. More than I could have ever realized or thought possible. I reason that most people out there have no idea how they affect the ill or health challenged. They are oblivious to what they give off and the deep effect they can have.

For this reason many of the chronically ill retire from the world and have to cocoon themselves in a manner that they can feel stable again. Feel able again. As able as we can be.

My life now has to have a filter on people, events, social media, commercials and politics and anything that can disturb the precarious balance I try to reach each day. I have had to cut off contact or interaction with those energy feeders and provokers. Those that constantly feed off the fruits of happiness and self esteem that you have been carefully growing and tending. They can drain you entirely in a matter of moments or with an unthinking word.

Being emotionally vulnerable was something that was condemned growing up and where I grew up. It was preyed upon and used as sport by those I should have been able to trust and respect. We start out life emotionally vulnerable because we are young and inexperienced and we are trying to grow. It’s ironic that later in life I feel I have returned to this state as I try to find new growth whilst I am in these weakened legs again.

My list of friends and contacts dwindle each year as I have learned to weed out the meaningful from the superficial. Although I may know thousands of people (even related to a considerable amount) yet it doesn’t necessarily follow that they will ever really know anything about me or appreciate the things I contend with. So I let them go. I only have room for a select group of peace loving devotees.

I realize that my natural state, and the mood to which I am most at home, is a peaceful yet humorous and creative one. One were I can admire a loved garden, a little bird busying himself in a tree and the warm breeze blowing over me while I create in my mind or remember some humour and enjoyable events. That’s me and that is what I try to protect at all costs.

I have learned to let go of a lot! I have had to! I have let go of a lot of mistakes, wrong doing, regrets, dreams, goals, people, stereotypes, prejudices, judgements and needs that previously ruled my life. There is no easy way to do this but to buckle in for some extreme soul searching.

The fact is that as of today I realize that I still cry a lot about things I can’t control and I do still hurt deeply from the painful things people say and do, even if they don’t mean it. So I know I have a ways to go on my emotional journey but as I look back I am proud of some of the milestones I have achieved in this area and I have hope for what I may be able to achieve.

Gentle hugs,

Trish

In The Beginning.

Recently a dear friend contacted me because their family member had been diagnosed with an Autoimmune disease and they wanted me to help them to understand more.

I felt both saddened to learn that their family member was going to have to deal with these challenging diseases but I also felt so amazed that he had bothered to learn more for the sake of his family.

Despite having so many emotions of my own I did all I could to help and I still am doing so. I have made myself available to assist him if or when he ever needs it. That’s what I believe we can and should do for our autoimmune family out there, without question.

After nearly a decade of writing and advocating about autoimmune illnesses many of the things I have written may have made some people annoyed, uncomfortable, resentful and displeased but if what I do can help just one person with these illnesses than that is all that matters to me. If it helps improve the life for even just one person (and the way they will be supported) it means everything to me.

I told my friend from the beginning that I am not a doctor and I can never give diagnosis or medical instruction, and that each sufferer will differ greatly in their own way regarding their symptoms, their progression, their circumstances and their personality. There is also no single one blue print about how our lives with these illnesses will play out.

He asked me if these illnesses can kill and this has always been the hardest question that I get asked because I never lie about these illnesses and what they can do. I have always answered anyone in the same way “…just because a disease can kill us doesn’t mean it will. We can never know how thing will happen.

It’s as simple and honest as that.

I was taken back to when my own battles started and how things played out in my life. I have never wanted anyone to go through that and I wanted to what I could to spare someone from all that happened to me and my husband. It was enough to drive me to writing these blogs and to fuel my work ever since.

Despite losing many friends and fellow fighters to these diseases there are still so many alive and fighting and that this really is the best way for me to feel that I have done something positive. I never think about whether my own illnesses will worsen or if they will kill me and I don’t focus on this in my daily fight.

During my conversation with my friend I was very focused on assuring him that there really are many people who will happily sign on to help support him (as a relative) and his autoimmune family member, it also became clear that there is still such a lot of misinformation and prejudice out there when it comes to these diseases so I would dearly love to know I have done all I can to set him in the right direction and not let him become influenced by ignorance and lies.

He asked questions like… “what has caused this? Is there a cure? Will just changing diet fix it? Can I catch it? How long will this (flare) last? Will there be operations and medications?…”

It is normal to feel overwhelmed when these things are diagnosed and it seems so amazing that everyone always wants to solve the riddle of autoimmunity. We all think we can and we all spend many years trying to prove we can. We try diets, supplements, exercise, medication, alternative therapies etc all in the belief we will cure ourselves, because at the end of the day the one thing we all want to do, whether we are sufferers or loved ones, is to cure these diseases.

It’s only after many years that we come to the conclusion that we can only learn how to live as well as we can with them until greater minds than ours find the ultimate answers. Believe me, I have spent millions of research hours and have tried every cure being waved around the Internet! But it doesn’t stop us craving a cure and wanting to end to the struggles we face, especially during terrible time of flares or progression.

Is it like cancer? I was asked. “No. It’s not a cancer,” I replied “but there are many ways in which our immune system can misbehave and many ways our blood cells can go awry…” A damaged body is not an easy proposition to face and to cope with. A body that is continually and progressively harming itself can become a full time battle. Often it does.

Will [they] need surgery? Can [they] remove the damaged part of the body? “…Since I am not a doctor and I don’t have a full picture of where and how your beloved family member has suffered there are no cookie cutter answers for all our bodies…” A great many autoimmune sufferers have never had to have surgery to remove areas damaged by our rogue immune systems. We don’t all need wheelchairs. We don’t all have metal joints. We don’t all need donor organs. We don’t all have catheters and aids… But some of us do. Many of us may. And it’s not a competition.

The hardest thing to impress upon a newly diagnosed sufferer or their supportive loved ones is this…

each day will be a moment by moment scenario. You must learn to see it as a never ending processes of mini steps and battles and never as one final push.

I also encourage any caring and supportive members to see their own roles in these situations and to get the help and support they may need too. Family/friends/partners will need to think carefully about the roles they have in the lives of the autoimmune fighter and the sooner they realize that they are not there to dictate the terms of this illnesses or the lives of their loved ones then the better and healthier everyone will be.

Sadly the typical cycle for most sufferers is that initially you may feel a satisfying amount of encouragement and understanding but this can change as the years progress. Once kind and respectful people can become unkind, demanding, doubting and cruel hurdles for the autoimmune fighter. I am not sure why such things happen but I do believe that it is completely unnecessary and should not be laid at the feet of those may be already struggling to have a fulfilling life!

For a moment I wondered what would happen to this newest member of the autoimmune family and what awaits them as they enter such a long and winding road ahead, but I took heart in the hope that this family member cared enough to learn more and perhaps that is all we can ask in the beginning.

To this day I don’t believe these battles can ever be fought in isolation, despite the fact that many of us are pushed into fighting alone and suffering in silence. I do all I can to appeal to the world at large to open their hearts and minds and connect with their loved ones. I keep writing with the hope every day. I am only too aware of the debt I owe those that have stood by me and how I can never repay them for their support and love.

This is the perhaps time he most human of all realizations.

I hope that this family will remember the love and will appreciate each other in the darker times ahead and even when they may feel their most lost and confused may they always appreciate they are not alone. Hundreds of millions of sufferers and their families/friends/partners/loved ones are out there and the more we connect the stronger we can become.

Gentle hugs,

Trish