The Myth Of The Martyr

Today as I was facing a particularly challenging and painful moment, once again I tried desperately to distract myself. Sometimes during these moments I also have my most profound realizations, I made some more today.

Today I realized that I can’t live with constant difficulty and pain without questioning the meaning of life or the purpose of existing like this… it’s never been an easy question to answer.

After being sick for long enough your life changes in every possible way. Trying to accept those changes and make the most of them is one of the hardest things to do. At least it has been for me.

As I sat in deep pain I could feel the futility and and frustration rising again like a painful tide. It can engulf me sometimes if I am not careful.

I try and fight these times by trying to focus on something, anything. A mosaic of ideas and images to deflect me in my time of need.

Today I began another of my deeper conversations with my husband and, as always, he listened.

I started explaining to him how I desperately and earnestly try to avoid two things in this current life, they are, being considered either a victim or a martyr.

Both of these labels trouble and bother me and I don’t ever want to consider myself as either of them, nor do I want others to impose these roles on me.

In my lifetime I have met far too many people who wore these labels and I saw how it consumed them. It became their burden and their prison and it changed the way people treated them and remembered them. It’s not a legacy anyone would want; Although at this stage of my life I care more about how I see myself now and not how other people will remember me…

As a younger person I didn’t realize how these labels can come in so many different ways, and they can be impossible to manage or escape, so I work very hard to keep myself at a safe distance from them.

When I think about the many injustices that life can hand, including debilitating illnesses, it can be too easy to see all the cruelty of life. It’s easy to realize how deeply unfair life can be, but I can’t let myself give up all emotional power and become the constant victim of life. And I won’t.

It can be a very fine line between being compassionate and caring with ourselves but we can also find ourselves feeling angry and bitter about how cruel life may have been to us. Sometimes there are no limits to how much pain and loss we must endure. Life offers no guarantees. Ever.

Yet I want more for my life than to reduce it to feeling a victim of its pain and suffering, so I don’t think of myself in this way at all. As angry and as frustrated as I can feel at times I still don’t feel like the world is targeting only me. I am not the most burdened person, I am always aware of that, but it doesn’t mean that I have to be uncaring to my own plight or challenges. In fact I also believe that we owe it to ourselves to be kind to ourselves and advocate for ourselves too.

Ultimately I aim to see myself as no more or less valuable than anyone else. This is another way in which I fight labels.

It is also why I will not entertain the accusation or suggestion that I cultivate labels either. My suffering and challenges are real but I don’t blame anyone nor do I use these challenges as a means of recognition or validation from others.

Although there might be days where I think these illnesses and struggles are unbearably cruel and more than I can cope with, I don’t think I am special because of this.

I also don’t look at myself as a fighter or a survivor. These are terms I read about in the media or how certain celebrities and heroes are described, but I don’t feel these terms apply to me personally.

Some days I cope better than other days and so most of all I consider myself as simply being human.

Equally, when I keep my struggles and pain to myself, or find myself having to make many sacrifices that many others may not have to make (and I don’t want to have to make) I don’t assume the role of martyr either.

Because I am chronically ill and disabled I also don’t feel I have to be an inspiration, constantly positive or obliged to do more than any other human being. Therefore I don’t have to dedicate my life to charitable acts or in the service of others simply to distract myself from my struggles, or in order to make myself feel better about being alive. I am not a martyr or saint either. I still have the ability to choose some things for myself. Whatever I do for others should be an act of choice, like anyone else. I always want whateverI do to come from the heart and with genuine intent.

I recall being told several times that I should dedicate myself to helping others in order to make good use of my remaining time and abilities. I took exception to it because no one should ever have the right to tell others how they should spend their lives. Becoming ill does not mean we have lost all rights and worth. It doesn’t mean we should need to endear ourselves or ingratiate ourselves so that we will be considered worthy or useful… Charity or kindness is not a punishment.

In fact the longer I have been more physically impaired the more I have become determined to build a stronger personality and be more free from scrutiny or labels.

The reason I Blog now is as I became less able and was thrust into an entirely new identity and state of being I was not happy with many of the actions, treatments, perceptions and judgements made about people with illnesses, and out of ignorance. Respect and dignity are things that the ill have to fight much harder for and It’s not right or fair.

I hope my voice will be added to opening up a new conversation and perspective about autoimmune illnesses and chronic realities.

As altered as our bodies and lives may become we are still, and always will be worthy and deserving of respect.

Always.

Gentle hugs,

Trish

Just You And Me…

This year has been a strange one for many different reasons. Probably too many to list in this piece, but an emerging theme keeps coming up time and time again… and that is that it is just my husband and I now, and it may be this way for a very long time.

My declining abilities has seen me give up a lot of online groups which I participated in. It has also meant that I am fearful of making plans to meet with friends and acquaintances as I invariably have had to cancel. Friends have gone and living their lives. People forget when you aren’t always in their lives or doing things with them or for them, that’s just the normal and natural way… so now it’s just us.

It’s surprising how small life can get and how quickly people fall away, but I have come to see this as another part of the challenges of chronic life. I refuse to see it as a personal indictment on me. I prefer not to hold on to feelings of loss, sadness, disappointment or abandonment. It doesn’t help me and it doesn’t change what is happening in my life. When seen like this it doesn’t hurt or surprise me anymore.

If my current life is too boring and limited for others than I can look at this very objectively and calmly now. I am more able to resign myself to the realities of life without fear or blame.

I imagine that I could try to remedy some of this by doing online videos and expelling energy that I just don’t have In order to garner some interest and interaction, but I currently believe that true friendships and companions shouldn’t require more than we have to give. So for now I won’t be attempting such things. I use my energy to retain whatever small amount of independence and enjoyment I can.

The message has been clear for some time now that it will be just us for most of my remaining life now and so I am looking for ways to make sure that we approach this period in the healthiest ways possible.

By healthy I mean having healthy expectations and behaviors. It will be necessary for us to strive to be companions and yet still individuals.

Having our own pursuits, interests, me time, privacy and boundaries are important for us both. Often these lines can blur quickly when you share so much of your lives together.

Wearing different hats and being being able to change them regularly i.e. nurse to husband, friend to carer etc is extremely hard sometimes.

Sometimes I need his help to do the smallest of things and sometimes he needs my help. The scales move back and forth. We must allow for this whilst still having healthy boundaries.

The first thing I have had to acknowledge are my limitations. What I can’t do or what I can’t provide. And the same is true for him. For example I can’t give him a males perspective on issues or problems. I can’t be a peer as I am not in his same circumstances.

He can not, and will never, know what it’s truly like for me.

That is probably the strangest part of all. Especially in times when he appears to be having the most relaxed and peaceful experiences and I am riddled with pain and self doubt. To be so close to someone and yet not truly understand has been a difficult hurdle but an important one we still keep facing. The key is communication and honesty.

It’s just him and me…

years ago I couldn’t even imagine a scenario where this would be my reality. I was busy. I was working hard. I was independent. I was a helping and giving person. I was an active and confident woman. It’s remarkable how some things change us so profoundly.

My only hope for us, and anyone else who may be in this position, is that we face this and overcome our challenges in the best and most respectful way possible. If we need counseling than we must seek it. If we need time out than we must take it. If we need compromises than we must be prepared to find them… together.

Gentle hugs,

Trish.

M.I.A

I have noticed a growing number of chronically ill / Autoimmune sufferers and I share something in common as the years stretch on, and we have been battling for many years. The similarity is this … we slowly just stop going to doctors and specialists.

Now I am not going to tell people to follow in my footsteps or even to suggest that this is what you should do. This is not medical advise. I am simply being honest about what is happening to me and that’s what my readers have come to expect.

In my time I have gone to all the various specialists, taken most of the available treatments, done all the scans and tests and I am still not cured and still growing progressively worse. So I have decided to manage myself. I believe I would be no worse off.

I felt a growing frustration and futility when it came to the medical profession and my health so it seemed like I was no worse off by simply trying to manage on my own, so I have been.

I still take my meds and do all I can for myself (diet, exercise, mental health) and try as hard as I can to ignore what is happening to me physically.

I find it easier to do this if I am on my own and not around doctors and others. When I am around these people the differences between my abilities and pain levels is glaringly obvious. On my own, however, I am simply normal within my own frame of reference.

This year I started house renovations to distract myself from my day to day routine and struggle and to make my home more accessible. It has been wonderfully creative and very challenging but it has also been incredibly taxing. Next year I will attempt to find a new distraction. And so on and so forth for as long as I can.

I no longer see any real benefit from going to regular specialist appointments and taking the same tests over and over to see how much progression I have, or haven’t, made. The fact is that with each passing year something has worsened and most likely will continue to do so.

The drugs I take will have to see me through the worst pains and the worst times and I hope that they can. They will have to.

I have come to expect regular flares and they have taken longer and longer to recover from. And they still do.

I don’t expect miracles anymore and don’t try every new fad that drifts across the internet.

I have modified my home and have bought various aids and supports as are available for my needs. And I do my best. So does my husband and carer.

I have committed time and effort to try to spread awareness and respect for my fellow fighters and sufferers, and I hope my small contribution will count somehow, perhaps I will never know, but I can say I tried.

I rarely go to online support groups anymore as it is often more beneficial for those who are newly diagnosed and those with many questions that the medical profession just can’t answer or don’t know. I also find it incredibly difficult to stay up to date with so many different groups for each diagnosis and medical problem I have. It can be exhausting on its own. So I don’t push myself and harm myself more.

To many doctors and many online support groups I am what they might call missing in action. And I am completely ok with it.

If I found myself in desperate need of medical attention and close to death then I would take myself to the nearest A&E, but until then I would rather let fate play out as it always will.

I decided I could either spend my time going for my MRIs and regular blood checks or I could spend my time living (as much as I can) and so I chose living.

For many progressive diseases there are currently no medications, so I consider myself no worse off.

At home, in privacy, I can struggle as much as needed. I can fall, rest, shake, ache and cry without fear or hesitation, and I can pick myself up when I am able. No doctor or medication can teach this, so I do it alone.

Friends and loved ones quickly tire of hearing the same stories of struggles, so I don’t even bother telling them anymore. I have one or two trusted friends that I will occasionally share some details with, but for everyone else I stick to listening to their lives and problems.

In a life of difficulty and daily struggle, I have chosen to look for and find pleasure and peace whenever and wherever I can and I will continue to do so. No scan, no test, no doctor and no drug can ever provide that. So for that reason I have become missing in action.

And I don’t regret a moment.

Gentle hugs,

Trish.

Life Times.

I have often wondered whether others see their lives as a series of life cycles or whether it mostly pertains to people with illnesses? I don’t really know … but it often crosses my mind.

The notion of family has taken on many different meanings during the course of my life time.

Today i look back and it seems as though I was born into a group of people who I share some common memories with and similar DNA, but to whom I don’t seem to share many other things in common at all. We are strangers now. But strangers who wish each other well.

Growing up for me meant moving out and moving on as soon as I could.

A new family was made within the friends and connections I made over the years; some more lasting than others… Until the day I met my soulmate. Someone who wanted to stay and build a new family with me. Someone who never let go.

My husband and I have spent a great deal of time and effort to fill our lives with the types of things we both enjoy the character and qualities we both respect. Over the years time has revealed those qualities which we now prize and cherish.

With each new stage and each new family it is as though I have shed the skin of the past and we both moved on to the next us and our next family. The years seem to have distilled us and shaped us for the families we choose, which has been far different from the original family we were born to. In fact it is the polar opposite.

I realize that at this time of my life that biological family will eventually start to pass away. I will then be faced with some reminders of that person I once was, although that person has lived and died many, many times over in the time between then and now.

One day there will be little left of the original family except for some remaining memories. I quietly prepare myself for this happening whenever I see someone talking about their biological families or their happy childhood memories. I will cross that bridge when it comes and I hope I will do it with the necessary respect and contemplation.

Not having a close biological family does not mean that I don’t treasure my current family or the people I love now. Far from it. It has made me cherish them even more.

My understanding of love and my ability to love has continued to grow and mature and I am always amazed by how much it has deepened.

Sadly, there are many people who feel that they are not complete if they did not have the close love and affection of their biological family or if they still don’t have it. I felt this way for a long time until I realized I was sabotaging what I currently had and who I was becoming.

Today, living with illness and pain, I feel a strong connection to a greater and larger family of people who have all earned each other’s respect and acceptance by virtue of our greater struggles. A family who doesn’t judge me. A family who doesn’t look down upon or compete with me. A family that loves and cherishes me more than many others I have known.

Perhaps as a reader of this blog you understand?

Perhaps you too have your own chronic family made up of invisible and precious fellow fighters and advocates? Perhaps they are also all over the world but still deep in your heart? A family who has come to recognize and who understands what the true value of each other are, and what real strength and commitment means.

A truly amazing family indeed.

Gentle hugs,

Trish.

Pain Poker.

I now believe that there are as many different experiences of pain as there are people in the world. We all have our own pain and cope with it the best ways we know how.

This is why it has been so surprising to me that people need to rate or compare pain levels. What purposes can this have? Is there a winning hand you can hold? A pain flush?

I have been to the hospital emergency ward a few times in my life and will always be asked the same question… “please rate your pain?” the fact is that I wouldn’t be at the A&E if it was something I could avoid or something I didn’t have to do, so the pain had to be strong enough to make me go to A&E!

As someone who is a chronic pain sufferer I experience pain all day, every day, and I have never reached a point where I am happy about it or have accepted it as part of my life. I still don’t like it or want it. I have often wondered if I will ever learn how to accept it. Is it possible?

Strong pain medications make me so drowsy but it still doesn’t drown out the screaming pain inside … Often I simply fall asleep from exhaustion.

Living with chronic pain makes me feel like life just passes me by whilst I am struggling to do even the smallest of things. So I try and disconnect my mind from my body. Disconnect myself into not thinking about it by thinking of other things; if I can.

Surprisingly though, this is not the thing that I hate most of all about my pain. No, the thing I hate the most is that it changes me and I don’t feel in control of the changes.

Pain changes me to someone who has become a recluse. Pain changes me to someone who is prone to snap at my husband when it feels too much. Pain makes me cry when I used to just ignore things. Pain makes me a distant friend who can’t communicate as easily and as often as I once could, barely at all in fact. Pain has made me unable to do many of the things I loved doing. Pain has changed me and my relationships. And it’s hard to accept that.

I am told that the key to a long and happy life is accepting the things we can’t change, but I don’t know if the person who said that was feeling as though their body was being crushed and their skin felt like it was in fire?

Perhaps I will never know.

Even though I read and repeat this mantra periodically I still don’t seem to be able to master it. Perhaps trying is the most important thing. I hope so.

Pain has me writing this in the small hours of the morning while the rest of the neighborhood sleeps. While many of my friends are asleep. While my husband sleeps.

Pain makes you feel alone in so many ways.

I recall my doctor telling me to try and do things for others, she seemed unaware that I had been organizing a charity and trying to lobby for autoimmune art exhibitions… and although I have managed to get some of these things going I must say that it doesn’t lessen my pain, it can actually increase some of the forms of pain that I cope with.

These days I play pain poker with my days. Yep. Pain Poker. It’s where you bet your body, your sleep, your quality of life on something, like a trip to the movies for instance, and you either win that hand and get to go through it and suffer minimal cost or you lose and pay the price, sometimes meaning it will take days (even weeks) of not being able to move etc.

I suffer gamblers grief and remorse but I wind up back at the table and dealing the cards again. Even upping the ante at times!

Nowadays I have to choose who is worth losing for. If I gamble my body, and more precious time, who should be worth the risk? These days I have been doing this for the one person who has stuck by me and holds my hand and wipes my tears when I feel like I can’t go on. My husband.

To make him a meal, go to the movies, draw him some artwork or just go for a drive. This is often the pot I am playing for in the Poker game. I would dearly love to be able to play for my friends and loved ones too but these days the collateral damage is high and very personal. But it’s all I got.

Over the years I have tried many things to be able to increase the chances and the fortunes but as I sit here today I must accept that the pot is growing smaller and the wins are few and far between.

… But that’s what makes them so precious and memorable!

Gentle hugs,

Trish

Going Quiet

After several years of cancelling plans, prolonged flares, pains and medications our friends and loved ones can often start to grow tired of hearing the same news repeated; almost as tired as we are of repeating ourselves… so we go quiet.

I found it difficult to want to say the same things over and over. “No, I am not feeling better yet”. “No. The medications haven’t cured me”. “Yes, I am tired of all those doctors appointments”… and so on. In fact I have become so tired of saying these types of well used phrases that I avoid saying them by avoiding people.

The other alternative I have found is to never speak about myself in conversations and only ever discuss the other persons life. Only ever talking about their achievements and/ or problems. It feels as though I must become even more invisible in order to have any social contact whatsoever.

Describing my day to day life seems to be boring to healthier people and so I keep my daily challenges to myself. Aside from this blog no one would ever know what happens in my chronic illness battle and so my readers are privy to information that most of my friends and family don’t know, which is, what my life is really like and what I really think and feel.

It seems a common experience that many chronic sufferers start to go quieter and quieter with each new year and each new challenge. There are no doubt many different reasons why we do this but for me it’s because I feel this growing pressure to keep my struggles to myself and that people don’t want to hear what my life is like as it is not exciting to the average person.

As much as I can I try from time to time to do the things that other people may find interesting and entertaining, but it can come at a very high price for me and considerable pain. So fun and interesting things can be few and far between. Too far for most people, but incredibly precious to me.

Any mention of illnesses can be interpreted as whinging, negativity and whining by other people and so often we feel backed into a corner where we have nothing left that we can say about ourselves.

So I go quiet and become more invisible.

It has been almost a year since I have had the ability or opportunity to meet up with a friend in a social setting as I can’t predict when I will be able to manage to do anything, and I think it would be interpreted as rude to call them at short notice to do something. I wouldn’t want to do that to a friend.

So I go quiet.

I tend to email, text, message or Facebook people with little bits of information that I think they would find fun or interesting ie. A joke or a picture of my furries and hope that it is enough to keep in contact.

I have tried to keep relationships going by doing things like sending my artwork to people I care about so they know they are in my thoughts and heart. They never know how truly difficult those pieces can be to produce and the challenges I face in making them. But I do it in the hope that a picture may speak a thousand words while I remain quiet.

Sometimes I can’t help but think it’s a sad fact that many people consider the struggles and challenges that people like me face as being boring and inconsequential. It is also difficult to accept that they also may feel sorry for the carers/partners in our lives who spend a lot of their time taking care of us. We become a reality that no one wants to acknowledge or know about. They are just glad that it isn’t their reality.

It may come as a complete shock to many people, almost all people, but my life still has many of the emotional elements it once had. I still laugh when I can. I still joke when I can. I still dream when I can. I still hope. I still create. I still love. I keep trying to do these things as well as being ill, and despite being ill.

But people don’t know it and may never know it.

The people who do get to know more about me and my life now are made up of a select few who have withstood the test of time and have proven their loyalty and sincerity through genuinely listening and wanting to stay connected. No matter what I am going through. Those few people who truly care.

… everyone else gets my quiet.

Gentle hugs,

Trish.

Another Option.

When people talk about the attitude of those with chronic illness they tend to group us into positive attitudes or negative attitudes.

Once labeled we seem to forever struggle with these stereotypes and will often be treated differently depending on what someone chooses to label us.

For instance, if someone reads my blog, or various pieces, they may form the opinion that I am coming from a positive or negative place (especially if they are unfamiliar with my circumstances) and also assume I may be sad, whiny or difficult to be around.

I certainly don’t agree with this logic.

I can honestly say that over 99% of what I have written has been done so in a very peaceful way and in the calm hope of sharing some thoughts and insights and maybe connecting with others. I don’t want pity, fame, validation or anything. It’s simply my experiences and thoughts.

If something I write and share resonates with someone else than I am pleased. Human beings like to feel connected to others in some small way. I do too.

I don’t consider myself better than anyone or inferior to anyone sick or well. I am comfortable in my mediocrity and simple existence. I do wish, however, that I didn’t have illnesses but that is the hand that was dealt.

Life is pain and struggle and learning how to cope is a key life tool.

However I don’t like the current trend of labeling things as either positive or negative. I believe the human condition can encompass more than these two states. I like to think of myself as a realist!

My brand of realist is such that we accept that things can be good and bad. Can be positive, negative and indifferent. Things can be ok, even when they are at their most challenging, because that’s life.

I believe the current obsession towards extremes and labeling isn’t healthy. It tries to make us act in ways that we shouldn’t need to. It attempts to usurp our authenticity. It prevents us from knowing and accepting our truest selves and I don’t agree with it.

To that end I don’t believe I need to be shining beacon of inspiration and positivity for the world, someone who tries to hide my own reality in the hope that people will find me more useful and enjoyable. I feel as human beings we are able to laugh, cry, smile, grieve and love and I intend to make use of the entire spectrum of human emotions whenever necessary or appropriate to where life takes me.

There are more states of being than merely positive or negative human beings and I am glad there is!

Gentle hugs,

Trish