Real Strength

Growing up in a small country town I was taught that strength was being physically strong and also never showing your real feelings or pain. It took me many decades to realize nothing could be further from the truth!

Looking back it’s hard to distinguish who to blame for these incorrect notions, whether it was my family and others or society at large, although I can clearly see where my immediate environment deviated many times from social norms when it comes to the way it regarded physical pain and emotional pain. Regretfully my upbringing resulted in a very unrealistic understanding of pain, empathy, endurance, respect and coping.

However as I matured and experienced the world I realized that the forms of strength I was familiar with growing up have very little to do with the human strengths that I admire today.

The notion that personal strength means not speaking about painful things, not showing emotions, not showing love, not offering empathy and not being vulnerable seems completely ridiculous to me today. Especially now.

Although many of those I grew up with may still cling to the belief that being tough or strong means being silent and emotionless I feel much more able now to reject this notion and leave those people to their convictions and their fate.

I have been able to construct my own understanding of personal strength based on my experiences of life and the world, and I feel much more comfortable with doing this with each passing year.

It has been my experience that personal strength has almost nothing to do with physical abilities or emotional suppression, in fact the very notion seems absurd to me now. I can’t believe that I bought into such an idea for so long!

The types of personal strengths that I admire today are such things as daring to try new ideas and open our minds to alternative thoughts and experiences; even when they test our long held beliefs. There is true strength in continuing to keep going after many failures or mistakes and yet still determined to carry on regardless.

There is exceptional strength in revealing our real thoughts and feelings even though we don’t know how they will be received. Only those who have had felt the pain of rejection yet still choose to be a feeling and emotionally giving person will ever know the strength required.

There are incredible amounts of personal strength required when you face daily pain and struggle and yet you choose to keep going and keep living for the benefit of others, to help them rather than for any personal benefit. This is something very few people today can appreciate especially when society keeps sending messages about entitlements and personal power. Very few comprehend the notion of responsibility and living for altruistically.

There is enormous strength needed to forgive others for the deep pains they have caused us and even more strength to forgive ourselves for the pain we have caused. The ability to still believe in ourselves and find beauty in ourselves when the world turns its back or closes its mind is something so difficult that it levels any physical pain to obscurity.

In this era of disposable and replaceable living it is harder to hold on to things than to simply push them aside.

True emotional maturity and personal growth requires far more strength and commitment than does physical strength and muscle power. Time and time again I have seen people admire things which look impressive but lacks deeper substance and meaning.

Finally, it has been my experience that believing in yourself, your worth, your beauty and your truth takes Herculean strength that very few people posses or are taught to nurture.

Time and time again I have had my self worth and value questioned and my honesty and credibility challenged by friends, family, loved ones, society and by the medical profession simply because I have diseases that affect my physical abilities and capabilities! I can say without fear of contradiction that facing all this and yet still choosing to go on and hold on to self respect and dignity is the hardest thing anyone will ever do and those who continue to do this, day after day, are the strongest people you will ever meet in this world!

Gentle hugs,

Trish.

Two Things For Certain

After more than a decade of battling active autoimmune diseases I can honestly say two things with certainty 1. You will never truly know how much you can endure and suffer and 2. People will always want to blame you for your diseases.

Over the years I can’t count how many times I have uttered the words “I can’t take this anymore… I have had enough”. Many times I have begged for an end. Nobody wants to know this and they tend to look down on you for admitting that these diseases can take us to the edge of a physical and emotional abyss. But they do.

Even the strongest and most hardened survivor has begged for death and release more than once, of that I am completely positive. It’s not necessarily that we want to die but we want release and an end to suffering. I would never have imagined, years ago, that such diseases could exist and that they would take me to such depths of despair. Never. But they do. You will never know how much one body can take and how much you can endure until you have an autoimmune disease.

Autoimmune diseases changes the way you look back on your previous life and anything that you went through before. Old hurts and pains pale by comparison. Old struggles seem insignificant and past failures feel like mere child’s play things compared to the new daily realities. It also changes the way you interpret other people’s opinions and challenges.

I confess I don’t view the struggles of others in the same ways I did before these diseases. I have always listened respectfully as person A tells me about their difficulties at work or person B complains of their troublesome knee but my true thoughts are kept well hidden. It’s not that I lack affection or empathy for such people but the brutal and honest truth is that I would give anything to trade places with them. Anything.

Which brings me to the saddest realization over the past decade and that is that almost every person you will meet will always want to blame you for your condition and your suffering. They want to believe it so badly that they will construct any and every possible explanation they can in order to blame you for your situation and diseases. I have learned to train myself to simply look through these people or ignore them in the kindest way I know how; although it is a real test at times!

Even now I get messages about supplements, diets, religions, exercises, positive attitudes and so on and so forth, all supposedly about curing my diseases… As though I haven’t tried to do any of things for myself!

People who want to convince you that by simply dropping certain foods, or hopping on your left leg on alternate days, seem so convinced of their own diagnosis and perceptions that they will go so far as to besmirch your character if you don’t immediately follow their advice. They tell themselves that this is proof that you have caused your own illnesses and you don’t really want to get better.

I used to be deeply hurt and troubled by these persons but not any longer. When I put them in perspective and I look at all I must contend with on a daily level they are easy to assign the priority and significance that they deserve.

I will mention here that I believe that there is a small portion of these people that are truly well meaning and genuinely caring but those people are easy to recognize as they are there in many other ways and remain devoted, loyal friends and loved ones.

They don’t just appear out of nowhere with their opinions and instructions and then disappear again.

Those people that do want to blame you for your illnesses are not really part of the bigger picture of our lives as sufferers and so they must be given the attention and emotions that they deserve. Nowadays when faced with a person, opinion or a comment about my life and my battles I ask myself this simple question

will such people be present at your end or ever be around during your hardest moments?

If the answer is no than they must be given the status and attention they deserve.

Despite the certainties that I have explained above there is still so much uncertainty in my daily life and my future, but with each passing day and passing challenge I amaze myself and I find new ways of seeing life. Uncertainty becomes easier and putting things into real perspective becomes a talent that only the battle hardened can possess. I have new wisdom and insight that I would never have possessed and that is one more thing I know for certain!

Gentle hugs,

Trish

Progressive Achievement

You get to a point with progressive diseases where there are more and more struggle days than easier days and that is where I am currently. When once symptoms cycled around with intermissions and I experienced breaks of more manageable days this is sadly no longer the case.

It’s very hard to be positive about this and say positive things that people love to hear you say… things like I am not the victim, I am a survivor and I am not my diseases. It’s hard to live these sentiments when every day becomes harder and harder and you can do less and less.

Ableist attitudes are a hard and oppressive walls to climb.

I used to think my positive attitude and sense of humour would make me impregnable to these diseases but I realize it’s not a magic pill for reality even though it is an ally in the battles that take place every day.

Today my life is a far cry from the life I had many years ago and just living is a constant struggle but it I still haven’t stopped trying, although I had to stop lying about it to myself and telling people what they wanted to hear.

Since I am almost always home now I have been looking for useful things that I can do and how best to use the abilities I still cling on to. I am currently entering my artwork in another art show and preparing for that takes time and energy.

I try to continue my advocacy as best as I can and write as honestly as possible. That is also hard in its own way as many people who know me seem to have had enough of my openness and turned away, perhaps because they feel tired of my writing and advocacy and there is now a very clear lack of support and encouragement from many of those who know me.

I feel no animosity at all towards people and although it has been very disappointing I have accepted it as simply being a reality of diseases and the consequences for choosing to be authentic about autoimmune life. I asked myself whether I regret doing what I have done and I only have this to say…

If being acceptable, popular and more loved means that I would have to have been silent and invisible than I would rather be truthful and rejected. I am actually quite proud of the courage and determination I have shown even though it has meant being alone. Few people will show this level of bravery anymore in this world of popularity, success and attention seeking.

I do regret the rejection that my husband has endured though and the way his value has been pushed aside and overlooked. He is a wonderful man that many people will never truly recognize and see since people seem to only want to distance themselves from the chronically ill and their carers.

Some people are now taking the attitude that I am the cause of where I am at and I am at this point in my life because I lack inner strength, don’t drink enough herbal supplements, my diet was never right, I took too many western medications, I don’t push myself hard enough, I am not positive enough or I have developed a defeatist attitude or mental disorder. Whatever they have chosen to tell themselves I am convinced it is has been to salve their own minds and consciences rather than being a accurate appraisal of what is happening and I really can’t afford to buy into whatever narrative they are choosing as I must focus all my available energy and strength for each daily battle. Although I think it also helps [them] to disengage and distance themselves… perhaps this is just human nature when some people are faced with things that can’t be rectified, wished away or that seem too difficult to cope with.

Despite the difficult realities of autoimmune diseases most fighters are some of the most hardy, brave, stoic, trustworthy, respectful, empathic and committed people that you will ever find in the world. Although I often break down in tears from pain I rarely cry about my life and what has become of me. I rarely experience poor me moments and I don’t live in self pity, however I continue to search for self belief and self pride in all that I do.

In recent months I have had to acknowledge that progression is something that can and often does happen for autoimmunes and new symptoms and battles are never far off and I must find peace with this somehow. I focus my energies into having the type of character that I would be proud to have and look back on as I now believe that this will be my true accomplishment in life.

I take pride in not hating or becoming bitter to all those that have gone and turned their backs. I am proud that I haven’t become an angry and resentful person despite all that I battle every day. I am truly astounded that I have worked hard on remaining loving, peaceful, honest, kind and respectful despite how the world (and others) may have treated me.

I have even found dignity, confidence and self belief in the darkest of times and the harshest of circumstances imaginable and it makes me more surprised than words can say.

It’s easy to love yourself when you are doing well, looking good, achieving goals and feeling in control but it is stratospherically hard to achieve this when you are struggling, hurting, falling, shaking, in pain and alone.

To all those out there who keep their heads held as high as you can and nurture peace and love inside you as best as you can I salute you!

Gentle hugs,

Trish

Surviving The Pain

People have asked me what do I do to cope with pain and the only answer I have is quite simply anything and everything I can!

When deep agonizing pain strikes I will use everything I can to make it through each torturous moment. I am fortunate that pain meds are available to me and I use them as needed but often they merely scratch the surface. The deepest and unrelenting pain requires managing each moment as best as I can. Such times are physically and emotionally exhausting and after hours of pain it is usual for me to sleep spasmodically as my body just can’t physically continue.

You shut down rather than rest.

Usually sleeping through exhaustion will find me waking again in an hour or so to go through the exact same cycle again and again. I truly believe it is the equivalent of running an Olympic marathon on your own.

After many years I have become a seasoned pain fighter which means I have coped with the most indescribable pain levels but I never get used to it or find it less of a challenge. I don’t think anyone does. Not real pain at least.

People have asked me if I have had any other experiences of pain outside of autoimmune illnesses for which to gauge the pain levels and I have shared that I have;

    Broken my ankle
    Had a burst appendix
    Endured gallstones
    Suffered kidney stones
    Meningitis

And

  • Trigeminal Neuralgia

I don’t believe I am a stranger to physical pain and it’s not something that anyone should have to quantify.

Pain is pain.

Over the years I have tried many techniques to try and cope with pain and distraction has its merits but requires incredible self discipline. I usually find myself trying to visualize something happy or pleasant or reciting things that I learned many years ago, poems for example, over and over for hours on end.

Mindfulness has helped but does not pull me out of painful eruptions with any degree of efficacy or certainty.

My husband’s voice is a very helpful tool and also the presence of my furries can have a calming effect that I treasure, they seem acutely aware of my circumstances and have often lay beside me when I have needed them them most.

My husband has read to me during painful flares when I haven’t been able to move or eat and it has been like a breath of fresh air on the hottest summers day. Hot packs, sipping fluids, darkened rooms, gentle massage (feather soft), warm showers / baths and several pillows have all been employed to manage one moment to the next.

The thing about such terrible pain is that the sufferer is truly only able to think in terms of one moment to the next and it becomes a battle of inches and not miles. Days melt away and time becomes irrelevant in this battle. You fight until it’s done.

I have lost days, weeks and months to pain and I never know how long relief will last. Therefore I try to make the most of a better day and collect as much emotional strength as I can in the moments in between.

I have found that my battles with chronic pain have completely changed me and the way I look at world now. I didn’t foresee it having such a profound effect but it also irreversible. I find it impossible to comprehend those people who constantly say that pain doesn’t define them as I have seen pain change me more than almost any other life event.

It is also imperative that when you are battling chronic pain you can not allow taxing or draining people around you, not even for a moment. Many chronic fighters avoid people at all costs as it would mean disaster for their coping skills. Even a short phone conversation with an emotionally draining or self focused person is enough to break what little strength we have, so we avoid it at all costs. That doesn’t mean we don’t have affection for such people but their energy and requirements are just too much and has painful consequences.

I work very hard to ensure that pain does not mean that I forget the world around me but it has applied a permanent filter to the outside world that is both helpful and harmful. For instance I have become intuitive at recognizing pain in others and I am filled with empathy for those who know real pain and suffering, however it also makes me disinterested in petty worries and unnecessary drama.

Pain has taken away so many milestones, events, outings, opportunities and celebrations but it has also encouraged me to relish the little things. Sadly, those little things that I now cling to and treasure are looked down upon by most of society as inconsequential and uninteresting. Thus I have become boring and dull to almost all those that I once knew and spent time with.

There is no longer a day in which I am not battling varying degrees of pain but I can’t let myself think about it too deeply as it can drag me into depression thinking that this is how I will live out my life. I try not to talk about it or discuss it with anyone other than my husband who has been there for every painful moment. It is like a dark secret we try desperately to hide from the outside world.

I have seen my pain change my husband in ways I feel profoundly regretful for. He has become anxious, tired, saddened and depressed himself. He has been forced to age beyond his years and he also views the world in entirely different ways from before my health changed.

As compensations for these heavy burdens we have experienced love, inspiration, dedication, peace, humility and a deeper connection than either of us ever thought possible.

Prior to this stage of my life I could not fathom being able to live such a life as this but I marvel at how we have both endured through such painful times and such incomprehensible conditions.

I truly find myself unable to adequately describe the life we have today, the levels of pain we cope with and the ways in which we keep going. It is something that no other person can possibly comprehend, unless they themselves have struggled like this also. Thus it has become impossible for either of us to relate to almost every other person we encounter in our lives and we have to find the courage to live outside the realms of most people’s existence… This is incredibly painful too!

People assume that after decades of pain you must surely become used to it or master it and that tears and regrets become things of the past, to those people I can only speak for myself when I say that is completely untrue! You have no other choice but to make room for it and do everything and anything you can to survive it.

Gentle hugs,

Trish

Political Correctness

These days there seems to be a growing concern that people can no longer say what they think anymore for fear of being attacked or rebuffed but I have often asked myself if this is actually true.

From where I am positioned it feels as though this is a period of time where people are speaking their minds more and more than they ever did and are also being engaged by other points of view that have remained silent for a very long time.

Prior to this point in time many different experiences and perspectives were silenced for fear of speaking up or not having a platform for which to speak, which to me is not a balanced and inclusive picture at all, but it was the only one this society had for many generations.

A quick look back in time where people were persecuted and tortured for expressing their opinions and sharing their beliefs reminds me we are far better off than those cruel and brutal times.

In this time of social commentary and live footage from anyone with a recording device, our eyes on the world has grown exponentially. No longer are we reliant on the coverage of certain newspapers or politicians and we have access to a whole new dimension of coverage. We are more able to do our own thinking and accessing without being spoon fed information by those who would seek to use it for their own purposes.

People now have more of an opportunity to form their own opinions based on the collective stories on offer.

What people may be growing weary of is the trolling, abuse and uninformed opinions that are out there and ready to chime in at any moment. Sometimes the abuse can be vile and deplorable as keyboard vigilantes dole out the worst hate speech and poisonous rhetoric imaginable. Sadly, there is little we can do to stop such individuals other than to develop an inner filter for such people and accept that there will always be that sort of person out there in one form of another.

In the years that I have lived on this earth I have had my own ignorance, bias and beliefs tested by all those people out there who have bravely spoken out about their experiences or circumstances and I feel I have a better appreciation because of it.

Furthermore, today’s activists have achieved more than previous generations have ever been able to due to the access to media and their willingness to speak out.

The biggest losers to this new found platform, in my opinion, has been the archaic institutions that have dominated the landscape for centuries as they have felt some of their powers curtailed and their opinions questioned.

For everyday people like me I realize that I have the opportunities to express my opinions that I never had before and I, likewise, get to learn from people I may have never heard from before … I can’t help but feel that this is a good thing.

Don’t get me wrong, I have had my share of trollers and I accept that many people will not agree with what I believe or currently understand, but I am also at peace with that. Those that attack and use vile speech against me I have had to learn to block out, like I would any other annoying noise that has no use other than to cause hurt and pain. However, those that have bought information to me in a clear and respectful way I have truly valued from.

It is human nature that we can not know everything or experience everything the world has on offer. I don’t truly know what it’s like to be anyone else but me at any given stage of my life but I do have the capacity to learn and I relish the opportunity to see the world from different eyes.

What we ultimately decide to believe and how we choose to go forward is still within our control and that hasn’t changed, therefore I don’t truly believe that as a society we aren’t able to say what we think anymore. Perhaps the most remarkable change is that people seem more willing to challenge our beliefs and share their own thoughts on various topics.

I like to believe that everyone has a right to be heard however this is not always the case in many parts of this world. Perhaps for this reason I feel especially proud and protective of my right to do so.

I recall the now famous quote by Evelyn Beatrice Hall…

I disapprove of what you say, but I will defend to the death your right to say it.

This is precisely my thoughts on the matter and I will always allow someone the chance to say their opinions in the appropriate manner.

The major thing that has changed for me in this current environment is that I choose more carefully those comments I wish to take on board. I am more discriminating when people attack or use cruel or unwarranted language. I ignore those people that I don’t feel I need to respond to or when I don’t believe there is any real value from continuing to engage with them. My filter is stronger and resilient.

Within the era of self expression and social media I find myself more confident in who I am as a person and feel that rather than being alone in my feelings or struggles, I have felt the support and connection of many people the world over that I would never have heard from in generations gone by. I am incredibly appreciative of those people who have come along and helped me grow as a person and encouraged me in my fight to keep going.

Connecting with many voices means we hear things we wish we didn’t have to hear and things that may be incredibly painful to take but it also means we can also hear some of the kindest and most valuable voices in this constantly changing and challenging world.

Gentle hugs,

Trish

Emotionally aware

I was talking to my husband yesterday about how I sense that people are becoming more and more reticent about sharing their true feelings and thoughts. They no longer share what is truly on their minds.

I wondered why?

Have we lost the art of communication and expressing ourselves? Do we feel that most people don’t truly listen or care? Or is it both?

I find myself saying less and less these days and sharing less and less about my life in general as I am not sure how this information is received or used. Most of the time I have wondered if sharing my personal views on life, the world, politics, health or goals is really of interest to people. Sadly I have seen that most people simply switch off or talk over you. Regardless of the motives I don’t see this behavior as conducive to sharing.

I also noticed that this has become even more prominent since my health changed. People seem to stop listening if they know your chronically ill as though I have nothing relevant or valuable to share anymore. This always strikes me as odd as it is often those who have serious illnesses or battles that are able to see the world in very different ways and actually have so much to offer!

I dearly wished I had listened more to those who had battled illnesses and health when I was younger but it was not the social norm to seek out their advice or offer empathy to such people. We tried to avoid such confrontations for fear of having our behavior or beliefs questioned. We didn’t want to confront the possibility that there are things in this world worse than not getting that job or going on that holiday. We don’t want to know that there are things that are beyond our control and that life can be unfair and painful.

Often it is the opinion of healthier people that our thoughts and ideas are devalued because we are no longer like them. We have fallen through the cracks and, worse still, it is all our fault. Our health is interpreted as character weakness. People also seem to think that by spending any time or listening to the chronically ill it may mean that they have to offer empathy or help. It seems to discourage people from interacting, it certainly discouraged the people that are not predisposed to helping or caring.

The social and political landscape is not a kind place for the disabled and ill either as invariably we are demonized in public policy and labeled as expenses and leeches on society. However if you asked any able bodied person what they would want if they became suddenly and permanently ill they would all agree that they would want care and support… a bitter irony indeed.

Whenever I find myself in conversation with the able bodied world I find myself restricted to topics solely about them and their reality. How is their job? How was their holiday? How are they feeling? What are their experiences? It seems irrelevant now what my thoughts and experiences are, contrary to when I was a healthier version of myself.

When I was healthier people listened with interest and engaged with me. I felt far more heard and relevant than today, despite the fact that I feel far more mature and grown as a person. My experiences and challenges have given me far more knowledge and depth than I could have ever imagined. It has given me more feelings.

I recall explaining to my husband that life for me now is similar to the matrix movies of the nineties where the protagonist becomes unplugged from the world of the matrix and sees life in a much more aware way then all other inhabitants who are still locked inside their realities. It was an analogy we both appreciated and agreed on.

But why should it be so?

Communications these days seem to be far more directed at goals. People want to hear from and talk only to those that support their agendas or that can help them in some way. Today there is this need to be perpetually busy and people seem to focus all their attention on acquiring and obtaining rather than being and growing. Communication is limited to these pursuits and it doesn’t seem to have a qualitative substance to it. In short, there is far less emotion and feeling in communications today aside from those that the media will direct and design for us.

The less people are feeling and sharing the colder and more isolated we are becoming and I am convinced that this will impact even the most able bodies people and rises in mental illnesses as well as physical illnesses will ultimately result.

I feel confident in saying that I, like many other chronically ill survivors out there, prefer conversations with meaning and emotion (even joyful and calming) rather than much of what today has on offer, which is why I find myself talking and engaging less and less in the mainstream rhetoric.

I am careful with who gets my time, energy and emotions now as today the most precious thing that I feel I have to offer are my thoughts and feelings. Therefore I am committed to only sharing these with those who truly appreciate it and those who also offer emotional depth. I know that I can’t be alone in these standards and I commend all those out there that have placed similar value on their time and emotions, regardless of their health status.

I would much rather have fewer social interactions with real meaning than have numerous ones that are superficial and unfulfilling.

Gentle hugs,

Trish