Finding Happy

If only there was a formula that worked for everyone and one which could see us through every difficult moment and painful time. But we are all so different that I really don’t know if one exists, or could exist.

What helps me may not mean much to the next person, and so on, but I thought it might be helpful to break things down in this short piece. Hopefully it may help.

I get lots of private messages from beautiful readers who tell me I am inspirational and brave but if you believe nothing else that I write please believe this I don’t feel inspirational and brave. Ever. I feel quite the opposite most days.

Getting through some days is really a matter of feeling as though I have no choice so I must simply go on. When I call out to my husband for assistance to move or shower, or whatever it is, I feel both incredibly grateful and incredibly guilty at exactly the same time. It’s a constant battle of the two. I try not to ask too much of him without lingering too long without assistance. And that is the way each day goes. A delicate balance of the two.

The fact is that it isn’t until I open my eyes each day that I can assess whether this is going to be a very difficult day or one that can afford me some extra abilities (like drawing or a short drive). I assume many of you may do the same. I can never know for sure.

In 2019 Australia will introduce euthanasia laws allowing people without any quality of life to make the choice to end their suffering. I personally support this law and see it as a law of dignity and respect, but I don’t assume everyone agrees. For me it means that should I ever deteriorate to a level where there is constant pain and no ability to enjoy life on any level then I will be able to make the choice of whether or not I will go on. At this time I don’t have that luxury or necessity, so I continue as best I can.

Finding reasons to go on can be so varying and so personal that there is almost no one answer, however I can only speak for myself when I say that love has a great deal to do with it.

I used to think going on required love from many sources and validation from many sources but I have learned that this is far from the truth and I had misused my time and energy trying to find strength in these ways. Today I realize that love can be as simple as a healthy self love and validation can come from within, and should.

Ironically as my relationships and connections outside my home dwindled my emotions somehow became calmer and much more stronger. My belief system strengthened. I don’t look for others to validate my life or existence and it is very empowering indeed.

I recall the peace and calm my grandparents exuded from their little homes and their seemingly smaller lives. It surprises me now that I was looking at back then I was looking at some of the answers that I spent many years searching for and didn’t even know it.

The simple act of being in my garden and smelling flowers can make the losses of yesterday seem much less important. Watching my pets play can bring much more joy than I have known in many other environments. Simplicity is the key to much of my current happiness and is far more lasting.

The ability to let go of yesterday is also a major part of coping. If yesterday was a bad day I have to be prepared to let it go and release it. Even dwelling on times when I could do more is a dangerous place to go. It is the past and that is where it let it live. I try to focus on this moment and this moment alone. Doing whatever I can and all that I can in this moment is all that I can care about and often allows me to feel clearer in my mind.

Simplicity.

Pushing myself means that I ask myself what I can do and can try to do now and not what I could do in the past.

I also find great peace and power from being completely authentic and speaking my truth; Regardless of what people may choose to think or react. This has been a huge part of the strength needed to go on. It also means that I have the ability to let my thoughts and feelings be heard and spoken. Too much pain and suffering has been caused by me holding on to my beliefs and feelings in the past. Those who are in my life now are truly aware of where I stand and how I feel. I believe suppressing ourselves or silencing our inner thoughts is too great a waste of time and energy. Much better to let it out and live in your reality and truth. No matter what others think or say.

Simplicity.

I have long been aware that material things and titles are meaningless. Perhaps as a result of life being reduced to painful degrees and abilities, nowadays nothing someone can possess or claim to know means anything to me; I am neither impressed or envious of assets and achievements. Perhaps I should be? I don’t know. All I know is that I feel much more impressed by a persons character and depth than any other part of their lives and I focus on the same for myself. The ability to express yourself and be yourself is a huge part of coping. Character is all we have and all we will take with us.

Simplicity.

Each day I try to think of something that I would like to plan for tomorrow, regardless of how small. For example planting a rose in a corner of my garden will give me something to look forward to. It’s these little things that give me some inspiration to keep going, despite the painful realities of life, they are vital to me. I make smaller and more achievable goals for myself that make me focus on them from day to day.

It is a sad fact but I can no longer remember a day that wasn’t filled by pain or physical challenges. Looking back to when that wasn’t the case is futile and emotionally dangerous. But trying to plan how I could do something within the limitations I have is now the inspiration to go on. For example, my husband had a birthday and I got to research, find and order a cake for him. It felt good. It was an achievement and a honour to do it.

Simplicity.

Learning to truly like myself is another huge breakthrough for me. Not just liking what I can do for others, or liking what other people see, but me liking me. For better or worse. In sickness and in health.

It took much longer to get to this place because the seed to not like myself was planted a long time ago and by others, but the past decade has seen me take back a lot of my own power. Liking myself more means valuing myself more, as I truly am and as I currently am. No frills or pretentiousness. However there are many occasions and people that come along to test that and jeopardize it. We will constantly be tested to make sure we really have learned to love and accept ourselves. But the more we have the less other people will control our feelings of worth and the more we will be able to endure and go on.

Simplicity.

True love. Sounds cliched but it is such a powerful tool to sustaining life. If you find yourself in relationships that ebb and flow and dwindle over time (and by what you can do for the other person) or you never really know how they feel towards you then it’s clear that you don’t share a deeper love with those people. I tend not to focus on them these days. I only treasure the connections I have that don’t fluctuate or where I don’t have to wonder how they feel towards me. No time to waste anymore. I have no energy for misdirected love and loyalty anymore. Even though it may reduce the number of people I love to a handful (if that) it is the depth of that love that sustains me in the darkest times.

Simplicity.

Finding happy isn’t easy but when you remove the layers of burdens and rubble that buries happiness and hides it then we get closer to happy. Despite waking today with such pain and struggling to see or breathe, my dogs playing at the end of my bed meant real happiness to me. It was worth seeing and it was worth living for.

Simplicity.

Gentle hugs,

Trish

The Unknown Fire

If you have been chronically ill or have Autoimmune illnesses you will more than likely have a slew of symptoms and challenges that have been undiagnosed for years and May remain that way.

No matter how much we search, or no matter how many doctors we speak to, we often have to face the fact that we may never find answers or relief. It’s one of the hardest facts to accept!

So many of us have faced some very painful and difficult symptoms that we have no answers for and we may have even began to doubt our own sanity. Why are answers so important? Because originally I thought that finding a name would help find relief. But after all these years I have found that answers to don’t come easy and more often than not do not come at all.

Many of my fellow Autoimmunes have been to many specialists in search of answers and have been frustrated and left feeling crushed. It’s the worst torture of all as we have to endure the pain of searching and the pain of being left without any answers for all our efforts and energy. A tortuous limbo.

Perhaps because there is so much unknown to specialists and so much is still left to learn about autoimmune diseases? Even diagnosis is a long and tedious process taking many years and many doctors. Read the literature and you will see the complex and unreliable testing standards for each of the autoimmune diseases and there are still so many contradictory tests results leaving many undiagnosed and suffering. It can also mean that many will suffer years of pain and advanced disease progression until finally some answers begin to filter through.

However even once a diagnosis can be reached it is far from the end of struggle. Many of the current treatments do not address or remedy all the symptoms and struggles we face. Many doctors do not even understand the struggles we face!

Many years ago I began experiencing burning and painfully red skin on my face, ears and neck. I never knew what it was or why it happened. It was episodic, unpredictable and very, very painful. I felt foolish so I suffered many years alone. When I told various doctors they simply stared at me in disbelief. Since then I have asked other sufferers if they had experienced similar symptoms and the feedback has been extensive and confusing. I have been told that I may have Lupus, steroid reactions and even blood pressure problems. Many different opinions but no conclusive answers. Nothing conclusive. Today I spoke to a new Rheumatologist and she offered yet another diagnosis. She seemed quite confident as she announced that I have Erythromelalgia. I was dumbfounded. Is this the answer? I really don’t know and I believe I may never know. I am learning how to make a peace now with it but it’s hard.

I recall the stories of many fellow chronic fighters that have spoken to dozens of doctors and have suffered for so many years only to still have no answers for all they have gone through. It’s heartbreaking. Without answers it also means that many still are denied medications that might help relieve these pain. I feel so deeply for their plight. For all of our plights.

Chronic struggles are so many and can affect so many different parts of our bodies in many painful ways that we may never know all that is happening and why, perhaps future generations may know more and I truly hope they do, however for those of us struggling now we may have to take comfort in each other’s understanding and support. Confiding in each other means we don’t have to feel entirely lost and abandoned. Finding each other means we that, even without answers, we don’t have to feel lost and alone.

It is a long road to accepting that many of the things we endure may have no answers or diagnosis and that we are often at the mercy of a painfully unsympathetic and I knowledgeable system.

I have had to change my own expectations on many things. I have had to accept the things that remain undiagnosed and incurable and focus on making room for them in the life I have. No matter how painful they are.

This burning condition I mentioned before has plagued me for many years and it interferes with so much, even preventing me from sleep as my face can not touch a pillow as I can not stop the red, burning and heat emitted from my skin. I can’t be touched until it settles. Whenever that may be. This is just one of the several challenging symptoms that I have and I have had to learn to live with. I could continue to search more and more doctors or I can simply add the symptoms to the long list of challenges and try to learn how to find some peace and quality of life despite them all.

I choose the later.

Even if diagnosed the reality is that autoimmune diseases and many other peripheral pains can not be cured and are simply managed as well as possible. The reality is that many ancillary symptoms can rarely be contained and medications have greatly varying results. As my burning increases and other difficulties deepen I will always be focused on living a life with some happiness and with love. I believe it’s what we prioritize as survivors that defines our daily struggles and what we try to achieve within our struggles will be far more important.

I have reasoned that if these pains and struggles haven’t taken me then I must use whatever I can to endure them and make room for them all in every day life. I don’t really have a choice.

If this latest diagnosis is correct than the damaged nerves and autonomic dysfunction at the heart of the burning can not be undone. I have to learn to cope and stand strong; No matter what. It must be added to the long list of daily battles and struggles that very few people will ever comprehend; Not even close.

I also believe that by becoming a community we can be so much stronger together. Our pains (physical and emotional) do not have to go unheard or unsupported and within the chronic community we can hold more knowledge, help and acceptance than many medical professions can offer.

Everything I write and everything I do is in the hope of making this community a stronger place and better understood by those who have not had to face the many challenges, pains and uncertainty that many of us do.

Gentle hugs,

Trish.

The Growing

Some of my fellow chronic fighters may identify with this piece, at the very least I hope it connects with some of you out there. It is something extremely personal and has taken many years for me to mentally and emotionally process. It has not been easy and it has been devastating at times.

Here goes …

When I became unwell, or started to suffer and deteriorate, so did many of my relationships. For a long time (too long) I blamed myself. I blamed myself for everything and I blamed myself for far too much than I should have.

It must have been my fault. Right? After all, it was me who got sick. It was me that couldn’t do anything or everything asked of me. It was me who became unreliable. It was me who couldn’t do everything people wanted. It was me who changed. It was me who wasn’t good enough. I was so wrong and selfish to prioritize my health when others expected me to do things that they wanted. Right?

Wrong!

A once close friend whom I always made time for and was always supportive of started disappearing and making constant excuses for not being there or showing up for me emotionally. I blamed myself. The friend even tried to make me feel guilty for expecting kindness and support in return. Always excuses. Always their own selfish view on the relationship and never any regard for my feelings and circumstances. It took a long time to see that the problem wasn’t my illness, It was them. Their character was coming out as mine was being overhauled too and life was highlighting exactly who they were as a person. After all relationships are a two way street!!

I had gotten so used to blaming myself for all the things that people did and said that I forgot something very important. I forgot to examine their behaviors!

Often we become so used to blaming ourselves and hating ourselves for what has happened to our health that we forget to look carefully at the behaviors and responsibilities of others. I forgot to or perhaps I never really knew how to; it’s hard to say.

I had gotten so used to blaming myself and hating myself that when someone was rude, someone said it was all in my head, someone said I was attention seeking, someone said I was boring, someone said I was pathetic, someone talked down about me or someone said I was embarrassing I simply accepted it. Sometimes I may have even believed it! … It is something I will never do again.

Thanks to being kicked and tested so often I started to let myself question their behaviors and make them accountable for themselves. I realized that it was them that had a lot to answer to; if they ever would admit it or own up to it. Regardless though, it made a huge difference to my life and my future.

I now believe that a real friend would no sooner abandon you than walk to the moon and back. A real loved one would stand strong and remember the love they have for you. A person with real character would realize that life has many challenges and tests and accept that we all have our struggles without retreating or disrespecting you.

The shift made a huge difference to me and how I see and value things. When I stopped being so focused on looking down on myself I could see the relationships from many different angles.

I then started asking myself if the person could be cruel, unsupportive, selfish and judgmental do I really want or need them in my life? The answer was a resounding no! Even if my health was better I still wouldn’t want that type of person in my life. Ever. No matter who they were.

The types of relationships I treasure and value now are completely different. Even the relationship I have with myself is changed forever.

I even handle the end of relationships and letting go in a much more, dare I say it, peaceful manner! I no longer feel stressed or broken. It is incredibly empowering.

The moment you take the power from someone to dehumanize you, devalue you or control your feelings you become a person with new meaning and purpose… even if you are chronically ill or disabled. And you can begin to grow.

Gentle hugs,

Trish.

Breaking Up

If you have been chronically ill for some time it is doubtless that you have seen more specialists than you care to count! I certainly have. The sad fact is that we are led to believe that they are always right and that one size fits all. They aren’t. And they don’t!

Growing up we are taught that the medical profession is the most infallible one there is. They cure people don’t they? They must be always right. Right?

Wrong!

The sad reality is that they are just as wrong as anyone else can be, despite whatever training and teaching they may have had. They are human in that way. They get things wrong and are prone to bias and inaccuracies. Learning to forgive them for this is an important step on the path to acceptance and coping with chronic illnesses.

Remember the old saying;

You have to kiss a lot of frogs to find your Prince Charming …

it is just as true when it comes to doctors and health care professionals!!

I have learned that it is not just illnesses we have to learn to accept and forgive but it is also the failings of others in their ability to care for us and support us.

I now look at finding specialists with whom I can work with in managing my life and my quality of life. I no longer give them the impression that I am at their mercy or not part of the equation. Often specialists can feel quite empowered and forget that they are there to assist us, not rule us.

The power differential has to be worked on and balanced.

It is a sad fact that it can take many different referrals and attempts to find the right fit for a specialist, regardless of the profession. It’s a fact that we won’t know until we are there and have met a number of different doctors.

General Practitioners and Primary carers don’t understand this but it is an important lesson to learn and can change the entire course of your management plan.

I shall explain further.

Take for example the workplace or our careers, we can’t always work well with everyone and every different personality out there, therefore we must be prepared to find the right personalities to make a successful team when it comes to our health. Sometimes even a once working team can change over time too!

Just like when we are looking for a partner and dating we won’t connect with everyone. It’s a specific person we are looking for. This is actually a good analogy for our health too! Imagine you are looking for someone to team up with to help negotiate your health and future, we have to find someone caring, someone who listens and someone you click with. The same is true for medical practitioners and specialists!

I now look (and keep looking) for the right fit for me and someone I can work with. No matter how long that takes! That was the hardest part. We think it’s a failing on our part because we couldn’t work with someone or perhaps we didn’t feel we had an equal standing in our treatment. But it’s not our failing it is simply the reality of the health care system. I have had to come to this conclusion the hard way. The painful way.

Sadly it is one of the hardest, most frustrating and, at times, heartbreaking realities of life with chronic health problems in that we won’t and can’t work with all specialists and we have to keep looking until we find the ones we can work with.

Just like we are all different people, there are all different doctors. Some work better with others and some don’t work at all.

If we accept that this is just a fact, and not a personal failing on either part, we can get closer to coping with our health challenges better.

I used to beat myself up. I used to let myself be spoken down to. I used to let my concerns be ignored. I used to believe it was all my fault. I used to feel so horribly depressed and worthless when I had to keep searching or didn’t like the care or support I was getting… it has taken years of hard knocks to learn how to process it all and keep going.

Now I look for doctors that care. Doctors that listen. Doctors who understand that I am the best source of information about what is going on with me and how I feel. I appreciate someone who says and acts as though I matter and they are prepared to work with me.

I need them to understand from the get go that I am only there because something is wrong, something is painful, something isn’t working and I am asking for help and support to negotiate my life. I am not asking for miracles. If it’s bad enough for me to be in this room and office, then it better be a priority to them too! Or I go. I move on. I have no other choice.

I don’t go to doctors for things I can cope with myself, or for things I can learn how to negotiate myself. No matter what they are. That has always been the way I look at it. For example, if my hand hurts I will do anything and everything I can for myself before I go to a doctor. That is just me and who I am as a person. If I can solve something for myself I will. When I can’t I expect someone to help put together a plan with me for what to do next…

The best thing we can do as patients is to hold our heads up and be prepared to advocate for ourselves… It’s hard. It’s frightening. It’s frustrating. But it is one of the most important things we can do for our health and our lives.

Be prepared to end a bad relationship and break up with your doctor that doesn’t have a future or no longer works. No matter how many doctors that takes.

… Remember you are worth it!

Gentle hugs,

Trish.

A heavy secret.

The only reason I write the deeply personal things I do is in the hope that if I say them out loud it might help someone who struggles with thinking these things and it may help them feel less alone.

That’s my hope anyway…

Many times (too many than I care to admit) I feel enormous guilt for the life I have placed on my marriage. I feel lower than a bottomless pit for what my illnesses has done. I look at my husband and I feel so much pain for all that he goes through that I swear it’s hard to breathe. He deserves more. So. Much. More.

I became very ill even before we married. I could barely walk and I was little more than a body on a bed and so I told him to leave me. I yelled at him to leave me and I told him how I didn’t want his pity or blind devotion. But he still stayed.

I have done this many more times since we got married and when my flares are at their worse (like now), and he still stays. Sometimes I am torn between wanting him to have a normal life with someone else who can dance, drive, run, play and live but also feeling completely devastated if he was to go and I would have to cope with all this alone… as well as missing him. My closest and dearest friend. I grieve the life we could of had everyday of my marriage. It’s cruel.

There seems to be no right answer. Not one I can choose anyway. I am damned either way.

I have to comfort myself with the fact that I assure him he is free to choose for himself, although I am sure he is probably facing a similar dilemma if I put myself in his shoes. He must face the pain of going and the pain of staying too! … But he always answers me by saying he wants to be here. He even says it instantly, without needing time to think it over. Perhaps he already has? I will never know. I can never know how he reaches his answers I just have to believe.

Perhaps that’s the most confusing thing about it all.

Who would want to be here for this? For the tears? For the endless pain? The 2 am crying? The falls? The depressing struggles? The humiliating symptoms? The doctors appointments? The lack of answers sometimes? The zombie like existence?? the helplessness? Who would want to be around for all that? Not even family want to have anything to do with it!

But this person does. This one person out of seven billion on the planet. And I don’t think I will ever understand it.

Today I asked again. I couldn’t help myself. Is it reassurance? I don’t know. But I asked again. I try not to frustrate things by adding additional problems and worries, but I asked anyway…

Will this be enough for you? I asked. He said yes. I cried.

Will it happen again? Probably. When flares like this happen and life is little more than a blur of pain, fatigue and sadness then it is almost guaranteed that I will ask again. I don’t want to live my life out of pity. I don’t want to be the sorry tale that people whisper amongst themselves or the stuff of hallmark movies. I don’t want that! I don’t want to be someone’s cautionary tale or sad footnote to life. …But still he stays!

Maybe on some level I think if this life is enough for him than maybe it can be enough for me too? Maybe?

I try to force myself to look around my bedroom and think none of this would be possible without love and strength. None of it. None of this would exist or be here without the love, strength and devotion we share.

I am reminded of so many marriages that have failed for so many reasons, and none of them even touch the surface of what a marriage with someone with chronic illness are forced to deal with! The Taj Mahal stands as a testimony to the love between two people, two healthy people capable of normal lives together, yet no monument could possibly embody the love, devotion, care, patience, persistence and courage needed to be with someone who struggles everyday of their lives and with whom you can not have a conventional marriage. Nothing. But those who are in such marriages don’t need a statue or a palace. Our little home will be the only thing we leave for the rest of the world and no one will ever know the incredible battles and struggles that take place every day inside its walls.

I hope this deeply personal revelation helps someone else out there. I hope you read this and feel not so alone. Because these challenges are the loneliest things on earth.

Gentle hugs,

Trish.

Enough Already!

Everyday my email is jammed full of inspirational stories from all corners of the world, and for every illness known, but it has always occurred to me that these daily offerings seem completely redundant and I find myself asking who is really in need of these daily inspirational servings? Who are they benefiting? And Who have they really assisted?

Stories of how someone has travelled abroad or started a new hobby or even competed internationally, despite having a chronic illness does little to inspire me. I already try and do things everyday and I would love to travel the world if I could! I don’t need inspiration I simply need the ability.

Comparing myself to someone who has more physical abilities or reliability is completely pointless and unproductive. It’s not a case of one size fits all. It isn’t a case of just add inspiration and all your problems are solved and you are capable again. It is dangerous to keep implying that it is!

I simply delete these emails and patiently await more useful information like a cure for autoimmune disease has been found, or the world has become much more educated and supportive of chronic illnesses… those are the headlines I want to read. I am sure many others do too.

Everyday that someone struggles to their feet to do anything, or lives some semblance of a life is inspirational enough in my book, we don’t need to be told to be even more inspirational or made to feel like we aren’t trying hard enough!

Almost everyone I know with chronic illness has done everything they know how to to either get better or live a life, despite the painful barriers they face. Truthfully we have no choice! We have only two choices really, we either keep trying or give up. It’s as simple as that. If you are chronically ill and are reading this than chances are you have already faced your darkest times and some of your worst nightmares. Congratulations… No more is required of you! You are an inspiration to yourself and all those who know you.

Whoever is writing these inspirational emails and sending them off to people who have enough to carry should ask themselves (and their readers) whether or not they are actually adding anything useful to the plight of the chronically ill. Instead of trying to convince sufferers to be more inspirational perhaps they could do more to show the rest of the world just how truly amazing we already are! …just a suggestion.

Gentle hugs,

Trish.

Gratitude

Almost every autoimmune group and every social media post constantly reminds those with chronic illnesses to be grateful. It becomes the throw away comment which is used to silence a sufferer up by shaming them into feeling ungrateful during the struggles they face.

I contrast this to people who enjoy better health and how they communicate their lives and struggles. Those who share stories like ‘…lost my job today…’ or ‘…work is so damn busy I have no time to go to (insert event)…’ Those people are usually consoled, empathized with, encouraged but rarely rebuked for not being more grateful.

Why the double standard?

Ironically it is those who struggle with their health on a daily basis that know precisely the value of real care, love, support and kindness that we may be offered; much more than most people I warrant. Yet we face a wall of condemnation every time we try to share a struggle or challenge.

Why?

I have also observed that those with better health tend to express their gratitude more frequently during times when they are celebrating an event or person. For example, it is common for those in better health to post or write about how grateful they are at their weddings or on occasions when they achieve an award or something similarly gratifying. Listen to any award speech and you will witness an outpouring of gratitude but are those same people expected to constantly give thanks and gratitude every other day, and especially during difficulties?

People with health struggles are Constantly expected to be quiet and grateful and I believe it is not a fair requirement.

Gratitude, like any other emotion, only has meaning when it is genuine and rarely do we feel grateful for everything, everyday. We are given a range of emotions and experiences in life that we must face and often some emotions are important to work through in order to cope or grow from them, for example grief requires that we express and experience pain and a sense of loss in order to better manage and cope with these losses.

Gratitude is one emotion amongst a myriad of emotions we have as normal human beings but it is the one that tends to be used as a whipping stick for those who have difficult health struggles and often used to suppress and silence them. I believe gratitude was never meant for this purpose and is misused when it’s purpose is to shame or silence the chronically ill.

During my history with health struggles I have indeed felt such profound gratitude that it is often hard to express and it has been the counterweight by which I have balanced myself in some of the hardest and loneliest of times. I would go so far as to say that I experience gratitude much more deeply at this time of my life than I ever did as a healthier person. It carries far more meaning to me now.

I suggest that many people battling illness will also experience gratitude in new ways than ever before. It is the type of appreciation that can only be achieved in times of true suffering and struggle. I feel confident that most people with chronic illnesses are only too familiar with gratitude and rarely need reminding of those things that they should be grateful for.

Society seems intent on using concepts like gratitude to silence and mask the plight of those with chronic struggles. It has been used more often as a tool than a virtue. Memes are constantly being poured upon the ill about being grateful, thankful, joyful and strong in the face of their hardships, so much so that it becomes almost meaningless.

Even fellow sufferers are leveling such trite expressions at each other as though we have been trained to do so like one of Pavlov subjects. The moment we feel sad we must ring the bell of gratitude to quieten and silence each other. We simply become an extension of societies reactions to us and only achieve in silencing each other.

I have always considered myself an advocate for better understanding and appreciation of chronic sufferers and of Autoimmune issues, and I write what I do in the hope of inspiring respect and empathy for an ever growing number of fighters out there. I don’t pretend to speak for anyone else but my commitment has been to raising awareness for all and encouraging others to speak out too.

It is my honest opinion that chronic sufferers do not lack gratitude in their everyday lives but we require more appreciation, kindness, respect and empathy for the difficulties we face. Only then will we experience the lives and the love that we can be even more grateful for.

Gentle hugs,

Trish