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,


Invisible (A Poem)


(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.


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,


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,


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,


Social Media

As a blogger every time I press the publish button or write a piece of work I know that it will invariably invoke some sort of reaction from the reader. I can never be sure what that reaction will be but I can decide how much credence I give it.

Putting yourself out there will always mean you are also subject to who is out there. Whether they are friend or foe, they will have open access to read and comment about your work and your life. The only thing that can vary will be how much I engage with others comments and how much I let it mean to me.

My soul reason for taking up blogging was to add a voice, and hopefully some context, to the awful misconception and lack of information regarding autoimmune diseases and chronic illnesses around today. There was so much patient shaming and disrespect out there that I thought the balance needed to be redressed. Although I write openly about my own experiences it is my hope that people will realize that it is ok for us to come out and speak up about how we feel and what we experience and that we are not social pariahs the world would like to believe.

So much misinformation and prejudice existed a decade ago, and still does, that it was my sincere hope that some education and sharing could help make a difference. I still hope this. I couldn’t do what I do without believing in this fundamental belief. So I keep on writing and I keep on hoping.

I never cared about who liked my writing or how many followers I had but I felt truly touched when someone felt a connection or a sense of empathy when they read something that they related to.

I notice today that there are growing numbers of people out there who are also coming out and sharing their stories. It is incredibly satisfying to see. Sufferers seem to be realizing that their difficulties and their challenges need not make them feel unwanted and invalidated in this perfection obsessed world.

When I first started speaking out I was truly shocked my the number of people who would say, “oh wow! My (insert name) has an autoimmune disease too,” or “I have battled lupus for years now…”. It was amazing to connect with so many others that it was no longer important to me who didn’t like me or who was trying to devalue me or my experiences. I felt released. I still do.

No find today that I am no longer dependent on the judgements and validations of the world at large, my voice has given me strength and my strength has given me more voice.

However, the downside to speaking out about anything these days is the number of people who will retaliate. It has become clear that expressing an opinion today or sharing a view is a dangerous thing to do and it seems like everyone (whether they know you or not) can (and will) feel entitled to fire back. It surprises me and disappointments me greatly because without open and respectful discussion no civilization has ever grown or flourished. Ancient Greeks recognized the need for their people to have a voice and the need for their people to think.

Since when did having an opinion or voice become such a blood sport?

The fact is that without sharing our thoughts and experiences, and feeling able to do so, we never learn. We never get to hear other sides of a story. We never get to see a bigger picture. Regardless of whether we are right or wrong.

I have many friendships and rewarding relationships with people that I couldn’t be more different from if I tried but I still enjoy their friendships nonetheless. Furthermore I don’t always have to be right all the time, I believe that I just have to be me and this is what I value from others. Authenticity.

But these days you it feels as though we can’t speak, write, post or show anything about yourself without someone trying to besmirch you or your entire being! I am also aware there is a social phenomena called virtue signaling where people feel better about themselves by holding themselves out to be more virtuous and better than someone else!

It has become unacceptable in society today for someone to disagree with you without trying to attack your entire character or worth. Why? The need to be right all the time, to be the best, to be special or to feel superior to others only causes more social problems than it could possibly solve.

It has even become common place for anger and vitriol to erupt in our personal spaces with people feeling it is necessary to become angry mobs rather than exercise respect and dignity. I am deeply saddened by this.

Whenever I write something I now know that someone will 1. Like it. 2. Hate it 3. Agree with it. 4. Ignore it. 5. Troll what I have written… and every other possible variation. None of this, however, alters the fact that I am writing about my own personal experience and my life and I am entitled to do so. I am no better or no worse than anyone else.

Although after years of living my life and fighting these illnesses it would be wonderful if people read my work and felt like maybe they understand a little more but I can never guarantee that this will happen. I can never predict or expect that something positive will come as a result but I can only hope.

I don’t ever write for the purpose that I will garner sympathy or popularity for myself because my life and my personal value exists completely independently of such things. I have found value in myself first and foremost and I also encourage all those with chronic illness to spend every ability and every ounce of energy you have in doing this. It is by far the most important thing that we can ever do during our life with illness! More important than medications or anything else because the fact is that we have to value ourselves or nothing we ever do will be worth it. Nothing.

This is essentially why I continue to write what I write and do what I do, regardless of what people have said or will say. I believe I have the right to think, believe and develop as I go through this life, My life, and I am not afraid to be wrong or to learn from my mistakes along the way. I have only ever been afraid of losing the desire to keep fighting my fights and finding no meaning in being the person I am today.

This is how and why Autoimmunitygirl came into being but from this little blog site I also became a stronger and more complete me.

Gentle hugs,


In The Shadows

With his permission I am writing this post on how illness and diseases have changed my husbands life forever, despite the fact that he doesn’t actually have them. He is my full time carer now but he never imagined that this could possibly have happened to him or to us and I marvel at the way it has transformed him and who he is today.

When we first started dating I was most definitely the more assertive, confident and the more outgoing. Because of the roles I had carried out in my life I was used to being a manager and a facilitator. I was all about a strong mental attitude and a positive approach. That was who I was then and I can only assume that was some of the things he most liked about me.

I have since learned that he also liked my intelligence and my loyal and loving devotion to those I cared for. I hope that this will always be how he sees me and how others will see me too. However time does change us and illnesses will change us completely!

Back then my husband was an academic, a geologist, an historian, a teacher and a published scientist. He was an admirer of Charles Darwin, and many other great minds over the centuries, and he shared his thoughts on their lives and works with me whilst we were getting to know each other. Neither of us could have ever known what was waiting for us and our own evolution which was waiting to happen in the most brutal manner possible.

Unlike the theory of evolution that Darwin suggested our own evolution and changes had to happen dramatically and far more quickly than the time frames for life on this planet. Ours had to happen almost overnight, and we only had each other to make it possible.

In my other blogs I have always written about life from the perspective of my experiences of chronic illnesses, and although this piece will also be a continuation on that theme, however it’s prime focus will be about the changes these illnesses have had on my partner and husband.

In the past decade or so I have seen my husband and partner transform from being a quiet, detached and retiring academic to one who now must carry out all the interactions and be the decision maker for our day to day lives. He answers all the phone calls, talks to anyone and everyone that comes along and takes care of all the financial transactions and bill paying. I used to do the lions share of all these things myself in the early days of our relationship and so it was a huge challenge for both of us to swap roles. Although we still discuss and plan our lives together collaboratively, the fact is that I no longer have the ability to carry out most of the day to day activities and have needed someone to oversee almost all that happens on a daily basis.

It is for these reasons that I have watched and witnessed how my husband has needed to become more open, more outspoken, more assertive, more disciplined and more organized; and we have both had to mature so much more than most people since autoimmune diseases took over my physical life. It has been incredibly hard for someone with my husband’s nature to take on all he has done and I am in awe of many of the ways in which he has endeavored to meet all these challenges.

Looking back on my former life and relationships I had seen how every time circumstances became hard or difficult other partners had either left, walked off or become bitter and destructive. I was expecting the same result from my husband as things started to unravel.

Thankfully I was wrong.

I remember one morning, after him being up all night with me in pain and struggling, watching him quietly dressing for work in the dark because he didn’t want to wake me. I cried with guilt knowing that he would have to endure a thirteen hour day before he would be able to return home and repeat the same nightly routine of house keeping and caring for me. Words can’t describe how we both felt during those years until we made the difficult decision of leaving his paid roles and income to become my full time carer. But even this was to bring fresh new struggles for him.

He has been irrevocably changed by our battles and struggles with illnesses and there is no way now that we could ever revert to who we were. Although some amazing qualities and abilities have been uncovered there have also been some darker things emerge that he (we) must now deal with. He has terrible anxiety issues, panic attacks, high blood pressure, migraines, insomnia, reactive depression, IBS and back and knee damage from lifting me and carrying me when I can not move myself.

I have watched him age overnight and yet I marvel at the dignity he shows despite all the challenges he faces. I have also seen him reach a point in his life where he no longer feels the pressures to conform with the stereotypical man that exists in society. He has evolved beyond this to show a nurturing side, an emotional side, an honesty and exposing his and gentle side which I thought I may never reach in any man, let alone in this man.

He owns his failures and mistakes with more dignity than many I have seen and he shows such love and devotion than I could ever ask for.

Years ago we both struggled to talk about some topics that were deeply personal and possibly embarrassing but today we talk openly and authentically about any and all topics. Nothing embarrasses or frightens us anymore! Nothing. We offer judgement free discussion to each other however difficult the topic may be. We have even tackled topics like our own deaths in a respectful and honest manner.

He has become a more resilient, funny, open, honest, trusting and beautifully flawed man in my eyes and our lives have had to take on entirely different meanings and directions.

Although today we rarely leave our home and we have become reclusive to a large extent there has never been a day in which we have felt intruded on or claustrophobic of each other’s presence. This is perhaps the most amazing thing of all! We are still able to set healthy boundaries and allow each other space within the confines of our own home.

Over the years he has been able to balance a lot of my feelings, thoughts, attitudes and thinking and I have helped him in these same ways too. Whilst I am sure there are many things that he would dearly wish were not a part of our lives and our circumstances today he is also quick to remind me that he wouldn’t want to be with anyone else. Those words alone mean more than any other words I have ever heard in my entire life. This has also been the hardest thing for me to understand but he has never given me a moment to doubt it.

Not even for a moment.

The most surprising things about him have been his constant devotion and commitment to our lives together, no matter what. Whilst so many others have turned away and disappeared, including friends and family, he has never once looked like leaving, although I have given him many opportunities to go. Many times I wondered how he could want to stay but his love has been unwavering.

Although such illnesses can impact on your physical abilities and sex life I have seen our level of intimacy grow and deepen like I have could never have imagined and we have looked at life’s hurdles in completely new ways.

Sadly, he has found it hard to find people he can relate to now and who can understand and empathize with him. He feels outside of the realm of other men his age. His peers don’t understand what his life is like and so he doesn’t hear from or interact with any. I can’t quite understand this because I only see someone whom I would want to know and have in my life due to how much he has learned and what he has to offer as a human being.

Despite all the hurdles that these diseases have placed in front of my husband I have been amazed and thankful for how he has risen to each one and although I would never have wished these things on him, and despite the fact they have taken us both to the edge, he has emerged from the flames time and time again in a new form.

Today we see life in completely different ways than almost everyone else does and our beliefs, ideals, behaviors, goals, personality, understanding and feelings have been forever changed by illnesses and diseases, but despite all this we still find ways to laugh, hold each other and smile everyday because, despite all that life has thrown at us, we have somehow survived it all together.

Gentle hugs,