A picture of normal

A picture of normal

Today I received a message from a fellow chronic fighter and it was a simple picture of her doing some everyday thing. It meant the world to me and made my day!

I realized in that split second that many other people may never know what that simple gesture can mean to those who live without much interaction and diversion. It really is everything.

I have been struggling again lately and because I don’t want to constantly talk or share difficult times with people, especially as they may grow tired of hearing such things, it remains a struggle to find things to share that people would want to hear or see. This doesn’t have to be a problem when taking with fellow fighters.

Often a fellow fighter has intimate knowledge of what you may be going through and so sharing a picture of their dog or hearing some little bit of news means everything because it helps us feel normal and connected. It’s like being told hey, You are still important to me!

Under normal circumstances it is likely that my friends / loved ones and I would visit, have coffee, meet up, go for a walk or do something very ordinary, but for many of us even the ordinary and mundane is beyond reach; At least that’s where I find myself most days. Therefore a picture of my friends and loved ones garden, their cat, their street, their party or their lazy moments by the pool are like catnip for those of us that desperately want to do more of these things in life.

Ironically, if I want a picture of an exciting journey, an epic celebration or an expensive car I can see millions of them on social media, but what we don’t have enough of is being able to share in the little moments of our loved ones lives… That is the hardest loss of all!

You see I have done a little traveling, seen a few museums, shopped, drank and ate at some amazing restaurants but I haven’t shared enough of the small and intimate moments with my friends and loved ones that I would like. I don’t think we ever really have enough of those things.

I want to see their silly moments, I want to see their difficult moments, I want to see their messy lives and messy moments just as much as I dearly want to see them happy! It’s all part of life and we often forget that every masterpiece has details in the background. Intricate, special, important and unique details.

I miss the smell of coffee from the kitchen in my old office. I miss the way the my colleagues would stumble into work. I miss the smell of rain as it hit the pavement in the city. I miss the way friends smile when tell them they look nice. I miss that hug goodbye when you leave after chatting with someone. I miss the way the sun comes shining through a shop window…

Many things are taken away from you when you have a chronic or limiting illness and sometimes the things we miss the most are the little things most people overlook all day, every day.

A little picture of something so mundane and yet an integral part of my friends and loved ones everyday life is more precious than gold to me and all it takes to make my day. So I encourage you all to share these things with a sick or ill friend and let them know you are still a presence in their lives and thoughts. Even the most little things will mean so much to them and you can change their day in an instant.

Gentle hugs,

Trish

The Last Romantic

And if your heart should break my love I will reach in and give you mine. Anything you need you can have. Take it.

I will take your pain and fears and hold back the world with my bare hands so you can find peace in my arms.

The years will never harm you or change the way I look at you. You are heaven to my teary eyes and my broken dreams.

Your voice is all that I will ever need and all that is truly good in this world.

I can feel whatever you are feeling, I can hear your thoughts and fears.

You will never know one moment of loneliness while I live and breathe. I will lay awake and listen to breathe and find comfort knowing you are sleeping and in peace.

And if it is possible to love you more after I am gone, I will do that my love. I will find a way to write my love for you in the stars so when you look up you will know I am there.

And I hope that we will find our way back to each other somehow because our love is stronger than the forces of the universe and longer than time itself.

– Autoimmunitygirl

As another Valentines Day approaches I thought it would be appropriate to think about the topics of love and romance and how it is quite ironic that for most of my life I had never really understood romance and intimacy at all, however I have never encountered real love and romance as closely as I have since my illnesses became far more invasive.

It seems so strange that as my body became less physically able yet my ability to experience closeness became so much deeper!

In the past love was simply words that were used in a sentence. A polite way of speaking to someone, or a phrase with no real meaning or substance attached. Until it slowly began to have real meaning and have real actions attached. I was sure that as soon as I could no longer be the giver and provider that my relationship would fall apart like all the others. Thankfully I was wrong.

Perhaps it was because of these terrible illnesses that I have been given the chance to see what real love and loyalty is? Perhaps I have been given far more time to ponder what love truly is, and so I have had many more opportunities to see real love in action? … Whatever the reason is I am very grateful that I have this knowledge to guide me through the hardest of times.

In the past love had always meant pain, confusion and rejection and therefore I had learned to put a wall between me and intimacy and to not trust people with my feelings or thoughts. This was possible whilst I was well enough to take care of myself and be independent enough and it seemed like a safe place to live; despite always feeling quite lonely and misunderstood.

Time went on and love became more of an ideal and a movie title than a real presence in my life. I also believed that most people must live in a similar manner with the odd bit of sentimentality thrown in. I heard words like love but I never felt it.

All that time I still hoped that there might be more to the story and that there may even be a wonderful revelation someday, but it always seemed to be more like a mirage. Meanwhile relationships were falling apart around me, even friendships seem to break under the slightest strain.

Sometimes I thought I had come close to finding love and true connections on a few occasions but I now understand that what I had really experienced were merely lessons. Lessons about love and intimacy are just as important to me as finding that deeper connection I looked for in life. Like clues to a puzzle.

I can honestly say that at a certain point I stopped looking or entertaining the thought that I would ever find what some people seemed to already possess. True love.

When I first met my husband I don’t believe that there were fireworks or lighting bolts of feelings, we simply started as friends. I honestly didn’t know that this was going to be true love. But slowly we shared ideas, thoughts, goals, likes, dislikes, questions, challenges and disappointments. Slowly we began to understand more about each other. It had become a warm and safe place from the world. It was our place.

True love feels to me like a place in many ways. A place far away from all that happens in the world around us. A private and precious place.

It’s strange how some great things can grow from tiny beginning, it always seems so cliched to say, but it’s nevertheless true in my case. Love had started to grow, but for me and it would take time and lots of tests to truly become strong.

I think a pivotal moment was when I realized that I trusted this person. I trusted him to care for us more than he cared for himself. I trusted him to respect me and my wishes, to respect us. I trusted him with my hopes and goals and I finally I trusted him with my feelings and failings!

This is love.

Finally, as my health declined I was so surprised that my value didn’t seem to alter to him. It was amazing! Almost everyone else I knew seemed to lose interest or value for me when I didn’t do things for them or help them in some way. It is strange how I only became aware of these behaviors only after I felt real love. It’s like living in the dark all your life and then someone turns a light on! So much is revealed.

Some of the hardest parts of illness is having to face your true self and your new limitations. With the aid of real love I have been able to slowly do this and yet still feel like more of a person and not less of a person.

It is truly life changing.

I believe that if you can accept and truly love yourself when you are not in your best physical circumstances or your least lovable than you can love yourself in any state possible! If you can look at yourself struggling and in pain and say I value and respect myself than no one can ever lessen you as a person or make you feel unworthy. You have made a stronger person and a deeper love despite whatever else has taken place inside your body.

Today, to my continual surprise, my husband never looks at me as though I am not worthy and he never speaks to me as if I were not his best friend. My body has weakened and changed but our relationship has deepened and strengthened. He never looks at me as what I should be or what I once was. I am always important and worthy, regardless of what life had done. I can’t say that about anyone else I have ever known.

I now look at magazines and news headlines with smiling couples on the covers and flashy headlines pronouncing love at last and I wonder to myself what kind of love have they truly found? Will it survive sadness, illness, pain, suffering, financial collapse and mistakes? Will it survive anything and everything and still manage to grow from the ashes? Only true love can do that. Only true love lasts.

Real Illness and disability doesn’t happen in isolation, not in the this society. With illness comes pain, hurt, doubt, financial stress, isolation, loss of identity, mistakes and confusion and so relationships and love are tested in more ways than any other relationship will ever be. In these times we learn how much our partners really love us, how much our friends really love us, how much our family really love us and how much we really love ourselves.

It is for all these reasons that I can say that it is because of these illnesses and diseases that I really have discovered true love and I have found romance and intimacy in a way that I never had before.

I take nothing for granted anymore and I find meaning in the smallest of things. I think that is what belies real romance in that it is what radiates from real love. Anything can be romantic when it comes from someone who really loves you!

Happy Valentines Day 💕

Gentle hugs,

Trish

Unimaginable

Growing up my understanding of illness and ailments was fairly generic and on par with almost everyone else in the community. We knew there were certain illnesses that people got whereby they either recovered with some antibiotics and/ or surgery or they died.

Cancer, measles and chickenpox was the most often mentioned illnesses in my youth and combined with a rudimentary understanding of human reproduction that was the limit to our combined knowledge of medicine and all that was ever needed. This is most likely why autoimmune diseases and invisible illnesses were rarely diagnosed and why many sufferers were mostly regarded as liars or malingers.

During the many decades in which I would experience bouts of illness or relapses I would become so scared and isolated as I had no idea what was going on inside me. I often wondered if I was going mad and my self esteem would ultimately plummet.

I was discussing my experiences with a fellow autoimmune sister the other day and I said to her “…I simply can’t fathom how these diseases affect our bodies… growing up I believed that if you had a fever you had would generally have some kind of infection and a dose of antibiotics would cure you, if you had broken something it would mend and that illnesses were straight forward and generally recognizable… never could I have imagined a situation were a person could lose sight in one eye, have no balance or that they would itch without any reason! These types of symptoms seems completely outrageous and incomprehensible to me… we were never told that such things even existed…”

She agreed.

I see now that we are a product of societies lack of knowledge and their blind disbelief. I also believe that some people even don’t want to believe such things actually exist. Especially some misguided people who may have some other motivation for their skepticism.

During my own research I read that even as recently as the mid 1900s their were many people who were tragically committed to asylums because people did not believe their symptoms and their invisible illnesses, later it was discovered that many of these patients were suffering from what is now known as multiple sclerosis. Truly tragic.

Multiple sclerosis is indeed a very difficult illness to understand, hard to treat and, sadly, can take many years to diagnose. During that time many people will be labeled as liars, attention seekers, malingerers or hypochondriacs. It was completely staggering to me that some of the earliest symptoms I encountered was that the vision in my left eye had become blurred and I could barley make out light and darkness through it. I was beside myself with worry however I feared losing my job more than losing my sight so I hid away at home and told no one but my husband. I put a patch over my eye and simply waited and hoped.

Seems ridiculous to me now.

Thankfully my sight was returned but never the same again. It was to be only the beginning of many unexplained symptoms which took many years to identify. Thankfully my current neurologist was much more understanding of multiple sclerosis and spectrum disorders. Optic neuritis is what caused my vision to do such a thing and even today when the temperature becomes too hot or I become overheated my vision will blur and fade without exception. Tell this to any person on the street and they will simply laugh or call you insane or a liar but tell another sufferer and they will instantly nod and understand your pain intimately.

That’s what knowledge and awareness can do.

So many of the symptoms we experience make no sense to doctors and even less sense to ourselves so we will often say nothing and learn to hide a lot of what is going on. For instance my arms and back can suddenly feel like ants are crawling all over my skin. I can scratch myself until I bleed but nothing can stop the itch and irritation I feel. I have bought creams, applied lotions, consulted dermatologists, changed soaps and everything imaginable but nothing would have ever made me suspect that it was the very nerves inside my body causing this sensation. It seems unfathomable!

Often stress can exacerbate the symptoms of MS and many other autoimmune diseases as it will often trigger our adrenals and internal defense mechanisms inside our bodies which once served to protect us, however autoimmune sufferers are attacked by these mechanisms and we will start hurting ourselves, internally. Why? No one knows. Not even doctors.

Many autoimmune sufferers who know what stress can do to our bodies will often avoid stressful situations and stressful people because we know the price we will pay for such incidents. The high price that we pay. This usually means we are labeled as hermits, unsociable, rude or uncaring. However nothing could be further from the truth. We simply can not risk exposing our health to those people who would trigger pain and relapses without a second thought and to those who would probably dismiss our suffering anyway.

Again. It seems unbelievable that such illnesses could exist! Why were we never told or warned? Why has there never been any advocacy about such diseases growing up? I knew more about ancient Egyptians and Black Plague then I knew about diseases which, as it turns out, makes up the top 10% of debilitating illnesses and has over 500 million suffers world wide!

Why?!

Because people don’t want to know unless it happens to them. Invisible also means ‘convenient to ignore’.

Systemic illnesses such as autoimmune diseases are completely unappreciated and doctors seem unable to comprehend how someone with RA can also have issues with their lungs and heart despite them reporting symptoms to their primary carer.

In one such example my rheumatologist did not know that my Sjogrens Syndrome could affect my pancreas and had damaged it until a GI confirmed it several years later! By then I had lost the ability to make certain enzymes in my body and now must take medications for this. I actually don’t blame my rheumatologist but it illustrates how poorly understood the systemic nature of autoimmune diseases are.

I probably understand my illnesses more than the average doctor and that is sad indeed as I have no medical Training whatsoever but I have decades of first hand knowledge and struggles. This is more information than most medical doctors have combined.

In short the sheer scale of these diseases and their insidious nature is almost beyond imagining and it astounds me that as a young person who loved driving and motorbikes could one day find herself unable to drive due to vision and balance issues that are invisible to the naked eye (Forgive the pun). This is little compensation for us as sufferers who find ourselves not only missing out on an enjoyable pastime or hobby but it is also a huge part of our identity and independence!

It is devastating.

Systemic diseases don’t just affect our physical health but they affect the emotional wellbeing and self worth of al those it affects. This is something that no one can possibly understand unless it happened to them and that is why I have learned not to put too much faith and trust I those who don’t also put a lot of faith and trust in me.

Gentle hugs,

Trish.

You Got To Have Friends?

It is quite strange to me that at this point of my life I am taking stock of my relationships and my understanding of what friendships are in order to try and build a plan for my future social interactions. I know it seems to be later in life but I am determined to draw some meaning and direction from my past experiences and use them to make the most of my future.

In truth I have always had a difficult history when it comes to understanding friendships and Relationships and I seem to have either not invested enough (been too introverted or focused on work / studies) or I have been guilty of giving and investing way too much of my time and resources! In those cases I have given seemingly endless amounts of time, energy and money only to be left empty handed and feeling taken for granted… its been such a puzzle for me to make sense of at times but I believe I have always done my best to try and forge healthy and long lasting relationships despite whatever has happened along the way. It is all useful information right?!

Since becoming this ill things definitely changed quickly and profoundly with many people drifting out of my life. While I have struggled to do even simple things around the house it became so much harder to do things with others: this makes me very undesirable to most people.

Many healthier people find it particularly difficult to understand this aspect of chronic life and most often they will cling to the picture in their minds of what you should be able to do for them as opposed to what you can now physically do for them and often they will want you to behave as you once did. They want you to be able to plan outings in advance and be available when needed (like you once did) however when you can longer meet these expectations they will often retaliate by growing very distant as you have become more and more unreliable to them.

Slowly invitations have dropped off and calls/texts/emails dwindle away. The saddest part is that it is through no fault of our own, but we will still pay the very real price for the worlds lack of appreciation and understanding. During conversations if we mention (or post) how we are doing healthwise the rest of the world tries to label you a whiner or attention seeker when you are merely trying to explain your circumstances and trying to educate them about your realities.

Often sufferers will have to pay people to be companions and to treat them as a real friend should.

Flashback:

Years ago I was speaking to my mother on the phone as we spoke regularly. I was always mystified by how much of a hermit she had become. She rarely went into town, she never socialized and no one visited her. She often went weeks on end without seeing anyone, despite the fact she could still drive, she was relatively healthy and she lived in a town of only a few thousand people that she knew quite well.

What puzzled me more was that she didn’t seem to care that she was mostly alone and she said she never missed company nor wanted to socialize… She was largely content on her own and I was speechless.

Over the years my mother and I had discussed my difficulties with friendships on several occasions and I had disclosed to her that I couldn’t understand human behaviors when I had done my best to be very loyal to people and very generous. She confided to me that “…I should not expect people to behave as I do and that a strong friendship takes many years and many many difficulties to develop….” She reminded me that true friendships were much less common and you could count them all on less than one hand; if you were lucky!

She was right.

She also reminded me that a good relationship started as a cautious relationship and should progress carefully and with strong boundaries.

We are currently taking care of our elderly neighbour and whilst we are checking in on her daily and helping her nurse her injured shoulder I found myself suddenly asking who could I call if I desperately needed help? I was stunned when I realized my answer and I And that it would be only my husband. Just one person after all these years.

I have since decided that I must look more deeply at all my current relationships, friendships and acquaintances.

I realize that as human beings we have several levels of relationships and amongst those levels I have a lot of acquaintances which I talk to if the occasion presented itself. There are hundreds of people that I consider to be acquaintances in fact! You might send them a birthday greeting (if remembered) or even speak once a year. Maybe.

There are also colleague relationships which we share with our work mates. This is more of a comrade relationship and tends to be confined to the work place. Since many chronically ill have been forced out of their careers it means that this social aspect is gone too. Sadly, It is certainly true in my case.

There has also been the explosion of internet friendships which can be both rewarding and yet also highly misleading. Rewarding because you can often meet people with similar interests or challenges and can it be an easier form of interaction for the sick and healthy alike. Chronically ill people however rely heavily on this form as often we simply can not physically meet face to face. It can be convenient and accessible but it can also be deceptive too.

Often we can invest emotions and time into our online relationships but we can also be misled because we miss out on all the visual and physical cues we get from closer proximity with others. It is also much more likely to be lied to by other people as you have no way of truly knowing what takes place on the other side of that screen.

Also… are we really that happy to exchange the closeness we get from human interactions for a lifeless and cold computer screen? Really?

I find that a Facebook message or social media validation does little to truly comfort us or support us when we are struggling. Hashtag responses and likes doesn’t replace a meaningful relationship for me any longer. I realized that out of the thousands of friends and followers I may have none of those people really know me or have any idea who I truly am.

It’s time to get real!

Despite being a handy and convenient form of keeping in touch social media no longer has the attraction it once held for me as it lacks more than it supplies. Don’t get me wrong, it’s still an enjoyable and easy way to share a picture of your food or see someone’s holiday or children but it doesn’t hold much beyond that and I am always reminded that it can also be quite toxic when we can be overly judged and competitive in our online environments.

The challenge for me now is to work out how to balance meaningful relationships with difficult physical hurdles?

I imagine that many other chronically ill and disabled people have this same painful dilemma and I dearly wish it were not the case. How do we build close and rewarding bonds with others when we can scarcely walk to the mailbox or brush our own hair?!

I have decided to take a step back and see who really wants to interact outside of Facebook and twitter. Who wants to take the time needed to get to know and understand each other? What existing friends / loved ones want to work at understanding and appreciating how to maintain relationships with someone who has health and physical challenges?

…Time will tell.

It isn’t easy to do such a thing as I am currently contemplating, especially when you realize that the outcome might be that you are more alone than you may have once thought, but I also have to believe that it is ultimately a healthier thing to do.

Like when you realize that a friendship or loved one has drifted away and you no longer have anything in common and you have outgrown each other, I find myself in a similar place as the realities of accepting who is really connected and who isn’t comes into focus.

However, I also know how brave I have had to be in the past, how much emotional and physical pain I have managed and coped with in the past and I now believe (like my mother) I am ready to embrace the realities of whatever lies ahead.

I will be doing everything I must to assure myself that I am still a worthy person and if it transpires that I become more alone than I must also believe that I will be in good company!

My heart and thoughts go out to all my fellow Autoimmunes who have been in this place and have navigated these difficult waters. It’s incredibly hard and emotionally straining. We want to have relationships who love us and treasure is no matter how our bodies behave. It also takes a lot of time and energy to grow such bonds, but these things are also things that we have so little of.

I know of many healthy people who feel isolated and depressed by their relationships despite being able to move around freely and having very few physical hurdles, so how are Autoimmunes supposed to cope?!

…So frustrating.

I am reminded of the old cliche my mother shared and it still stands true… ‘It is better to have one true friend than thousands of fake ones.’

That will have to be a number I can live with and treasure if necessary… We will see.

Gentle hugs,

Trish.

Furry Relief

Anyone who knows me will no doubt know what an animal lover I am and have always been. Years ago I found a joy and companionship in animals that I never found in other human beings and today that has only increased a thousandfold!

Animals have an innate ability to bring out the best in people and to show us all what we should aspire to be. Calm, relaxed, loving, authentic, loyal, devoted, affectionate and grateful for little thing. What mentors!

As my health has worsened, and in times of flares and terrible pain, there has been no relief and support to rival that of my furry little family. Ask any chronically ill person how they cope and ninety percent of the time you will hear the word pet mentioned repeatedly. They are almost synonymous the words chronic illness and companion animals.

I would never have made it this far without the love and devotion of my furry family and they have been my entire family during hard times and challenges.

The fact that they require us to look after them and take responsibility for their health and well-being means that we can never become lost in self pity. They also serve as a source of self esteem and self worth. Regardless of how the rest of the world may value us or regard us our pets see us as worthy and love us unconditionally, no matter how we look or function.

My darling furry family have often been the inspiration I needed to fight on when I had lost all hope, and are the reason I am still here today. Therefore it is my sincere hope that as society changes and evolves so too will the way that animals are treated (and the rights they have) will also evolve. Social policies and governances which recognized how important companion animals are would see them protected and cared for in a manner befitting their roles in society.

My first advice that I would give anyone who told me that they were chronically ill or have health challenges is to get a companion animal… get two! They are without doubt the strongest support, companionship and source of happiness you will ever find. They are also a powerful pain killer when you need it most.

The hardest part of having a pet in your life is facing life without them. Trust me. I have had the honour to care for many furry lives in my time and I can attest to all that I have stated above. I recognize that you don’t have to be sick or disabled to love your pet but the chronically ill experience having a pet in an entirely different way than most people. They have a far deeper role in our lives.

Our rescue pets have rescued me from more difficulty and pain than I care to remember and I pour my love on them in return. I confess that an active bigger dog will have more physical needs than many sufferers may be able to accommodate but I have no doubt that for every sufferer there is a dog, cat or other that can fill the space that the chronically ill may have. No matter their abilities.

I have never known a deeper or more enduring bond than that of a pet / companion animal and their human counterparts and I am happy to see that some countries have recognized this within their medical, transport and housing policies. Some countries even allow companion animals into their hospitals as they are well aware of the healing powers of their love.

As I write this piece I am surrounded by my furry family and they are sleeping soundly beside me, and on me. I never feel like I am not worthy, I never feel like I am not enough, I never feel rejected by these little souls and in my book that makes them better than all the human beings in this world.

Gentle hugs

(And pats)

Trish

Footnote: This piece focuses primarily on the role of the companion animal and is deliberately not intended to be a larger comment on animals and wildlife in general, but it is my opinion that there needs to be radical change in all areas and hopefully that will happen sooner rather than later.

The Devils Tic Tacs

Prednisone is a drug that is extremely misunderstood by many people both well and chronically ill and because of this I thought that after all these years it would finally be a good time to write something about it, so I am writing about my experiences.

About a decade ago I first encountered the drug prednisone in an attempt to address the inflammatory markers in my blood work, the pain in my joints and the various other symptoms I was experiencing. My doctor and I agreed to try a higher dose at first and then taper off so I started on a dose of 70 mg and then I would decrease it over time and according to a schedule.

Prednisone is not a drug to just take for a few days and then stop as there are several important medical reasons for this. I followed my doctors instructions closely and to my surprise my markers did in fact start dropping sharply and so did the agonizing pain I was in. It was indeed starting to be much more tolerable and manageable.

Thank goodness!

All of this did not happen over night and it took several days to even notice some differences in pain. It took much longer to notice substantial changes but it did happen. Not all of my symptoms were relieved but things were at least going in a better directions.

What could never be predicted however were all the side effects which came crashing into my life with great force. Like many side effects we never really know what’s going on until we are in the thick of them and fighting hard.

The first things I noticed was a hunger that I could not control. I was constantly hungry and no amount of eating would relieve it. Another incredibly difficult side effect were the sleeping disturbances. I couldn’t sleep and would find myself battling long bouts of insomnia. It was awful!

But the most upsetting of all was the impact the drug had on my emotions. My emotional state was in complete turmoil! I would go from being calm to utter panic and then the depths of despair. I cried constantly and found myself arguing and agitated with my husband over anything and everything. It was a rollercoaster of emotions and I felt wildly out of control. It was hell.

At some point my husband feared I was having a breakdown. We both did our best during this awful time like soldiers in the thick of battle.

My face had changed almost overnight too. I had developed the face of someone who resembled a chipmunk. Cheeks were round and my entire face looked like a dinner plate. I gained weight quickly and in places I never expected. I became shocked and depressed by the weight gain despite knowing that it was a side effect listed in all the literature.

But the drug was working!

The only worse thing than the hell of this period was the hell of tapering off the drug. It’s like chaos and nightmares mixed together in one long waking, miserable torture. I felt a weakness that can’t be described. My sugar levels fluctuated wildly. I could barely move an inch. I struggled ever more with dizziness and coordination. As I got down to under 15 mg I experienced what is known as adrenal crisis. An emergency call to my doctors and I was told to increase the dose again and drop even more slowly, even going down by .5 mg at a time. Yes, even by such a small amount. And I did.

It was over the course of the next year that I discovered that I could not go below 5 mg without intense pain, hot red joints and difficulties even breathing and brushing my teeth. Prior to prednisone even showering was agonizing and my hair and dressing needed my husband’s help to manage. Amongst many other things.

Fast forward to today, 10 years later, and I have been on a maintenance dose of 7 mg every day, I am unable to ever stop as my body is now fully dependent on the drug and my adrenals no longer work as they should.

It’s a hell of a drug!

My immune system is permanently compromised and I fear germs and infections constantly. I must choose carefully where I go, who I can be around and it even impacts on any surgery or procedures I undergo. Hence my teeth extraction required careful monitoring and signed permission from my specialists.

For people such as myself we have encountered this drug and an intravenous version called methyl prednisone which delivers a high dose of 1000 mg into our systems in order to pull us out of health nosedives. It is something that we don’t choose lightly! We have to be in such extreme pain and circumstances that we feel we have no choice but to sign up for a walk through Hell in order to get some relief.

Not many people understand the incredibly difficult nature of prednisone and it has been called the devils drug amongst the autoimmune community. Although many of us can have different experiences with this drug ranging from milder side effects to psychotic breaks (yes you read correctly!) there is one fact we all agree on … we wouldn’t wish it on our worst enemy… and that is saying something.

Having said that there are times which I confess that I would dearly love to have some healthier people truly know what it feels like to go through this; Especially some people who mock or deride us for our invisible illnesses. No one would do this without absolutely having to. It is the drug equivalent of chopping off your leg to stop the pain or jumping off a cliff in the hope it will help your body. But for some of us the reduction in pain and having control of my limbs and vision leaves me no choice.

Over the past fifty years there has been little changes in alternative drugs to prednisone and various other biological drugs which leaves many of us struggling with these drugs indefinitely.

Every time a spike or flare in my illnesses occurs it is often the drug my doctors will instruct me to increase and it is for that reason I will languish in pain and agony before even telling them. I have struggled for nearly eighteen months at times before surrendering and consulting a doctor because of the medical Russian roulette that gets played out with various drugs and side effects.

Naturally this piece is not aimed at telling fellow sufferers what drugs to take and when to consult your doctors. I assume my readers know all this and don’t refer to my blog for medical advise or diagnosis. It is simply an attempt to assure my fellow fighters that you are not alone in your experiences with these drugs and to try to educate the rest of the world what these drugs are like.

Many of my fellow fighters choose not to take this drug under any circumstances and some are even allergic to the drug. Some have no choice but to have regular infusions and therefore are veterans of the pain and awful backlash of the drug. Wherever you are on the spectrum we all understand and support your decisions. Truly. These battles are hard enough without unsolicited judgements made on your choices (or lack thereof).

It is a true tragedy that many of our healthier friends and loved ones will only want to see the weight gain, the weaknesses, the emotional struggles, the unpredictable behaviors and some of the awful side effects of these drugs but never comprehend the battle that is going on underneath the surface. It is a war that only other veterans can ever truly comprehend.

That is why this year I have dedicated much of my writing to hoping to raise the self respect and dignity for those who do fight on every day regardless of who appreciates our struggles.

Prednisone and such drugs are not for the faint hearted or weak of character and anyone who takes these drugs have my deepest admiration and respect. These drugs are the equivalent of dropping an atom bomb into our systems but it does mean we get to fight another day.

Gentle hugs,

Trish

The Voice.

It seems to me now that people will often reveal their true feelings and life experiences in the manner which they speak and act. Often times it pervades all we do and see, and the way we speak about them.

For example, I grew up around someone that was unhappy with their life and many of the events that had occurred, as a result his conversations were almost always about himself and his speech was marked by a monotone and heavy atmosphere. It was difficult to converse with him and I would often avoid try to avoid it.

Another person I knew had not liked many of the events in her life and she felt an underlying anger and resentment towards the hand that life had dealt her, as a result her conversations would generally be sarcastic, bitter and she enjoyed gossiping about others constantly. It was hard for me to be around her too.

Over the years I have noticed the changes in many of the conversations and the manner in which I, and those around me, speak. I notice the topics discussed more. I notice the inflections in voices more. I notice the cadence in our speech patterns and how often it belies how we are feeling and how we perceive our lives.

The other day I thought about my own conversations and how and what I talk about. I was surprised by what I interpreted from it.

Generally speaking I enjoy talking about ideas, plans and experiences. I have great enthusiasm for both deeper conversations and also humorous observations about life. I will ask questions and seek answers. I have never lost my joy for discovery and learning. Even now.

Despite having sadder days and painful events I can enjoy talking and my interactions, especially those which appeal to my sense of humor and curiosity. Thus I am very proud of the fact that I haven’t let the hardships of life fill me with morose thoughts and morbid conversations. I don’t believe that depression rules my existence despite all the things that could depress someone with health challenges.

Much of what we know about people can be revealed in our voices, our speech and our conversations. They are the silent cues to gauging our emotional temperatures.

One of the most significant changes to my conversations over the years has been my ability to show and express more emotions and authenticity. I now enjoy a much broader range of emotions. No longer do I feel limited to being a happy go lucky ‘yes man’ or a positivity Queen. I feel confident in being able to share laughter, curiosity, sadness, and love in my emotional repertoire. I now feel quite restricted by people who make it hard for me to enjoy this emotional range; I have tended to avoid those people or situations much more these days.

So many more topics and feelings are available to me now that I don’t wish to waste precious energy on unfulfilling dialogue or interactions; Especially as energy and opportunity is so much more limited these days.

Outside of these blogs and my advocacy work I rarely discuss my health and my daily challenges as I don’t want my interactions or my mind to be focused or based on these things. I believe my thoughts and feelings have the ability to live independently of my physical being, so I cultivate and nurture anything that can thrive despite chronic health battles. I love knowing that my personality and character is growing.

I strongly believe that my health challenges have given me the confidence, resilience and strength to live a more authentic and deeper life. It may sound quite strange to many out there but health challenges can really strengthen our inner voices and can make us take much more notice of what our inner voice is saying.

This is just one of the things that I have become most proudest of in my health journey and it is an important tool by which I gauge my own coping skills, based on what I talk about and how I talk about them.

There is so much that can be learned through our conversations with others that are both spoken and unspoken and there is so much we can learn from those coping with chronic illnesses if we would only just listen.

Gentle hugs,

Trish.