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

Chronic Validation

This can be quite a difficult topic and filled with emotions for many fellow chronic sufferers, and for a long time it has been difficult for me too.

It seems ironic that from the first moment we experience symptoms and we suspect something isn’t right that we can often try so hard to ignore and hide what is happening to us… Until we can’t any longer. At least that’s what I did. As much as I could anyway.

It is almost incomprehensible that we should then have to spend so much more time and energy trying to convince other doctors and even specialists that something is terribly wrong.

Sadly this can take years!

The average time for diagnosis of an Autoimmune disease is a staggering 8 years! This simply isn’t good enough.

During this time we can experience the most awful and heartbreaking treatment from those around us, all questioning our honesty, integrity, credibility and character… as if we were not suffering enough!!

Waiting for validation and empathy can be an exercise in frustration and heartbreak because, in the end, we must ultimately ask ourselves do those who doubt and dismiss us really matter? Do we need the validation of those who would treat us in such a way in the first place?

It took me several years and quite a few tears to realize this brutal truth.

No, [They] don’t matter and they will not be part of our coping with the years and battles ahead.

So many people write to me and post in support groups about the heartbreak and frustration of being doubted, belittled, attacked, embarrassed and abandoned. It can be almost unbearable; but we must find a way to endure.

Our circles tend to shrink and this is a very critical time when we can start to develop the strength and self belief we need to go forward.

We have to learn how to accept and believe in ourselves, even if very few other people do. It is a real ‘trial by fire’. If we didn’t have very good self confidence and self esteem prior to this point in our lives than it can be the hardest challenge we may ever face. But it is critical that we do it in the best way we can.

After over a decade of being severely affected by my diseases I have changed so much, and I believe that self validation has been an area that has experienced the most change during this time, but it has also been the slowest.

It took a long time to start to rebuild my shattered self esteem and to plant the seeds of self belief, perhaps I never really had those skills before, but I am pleased to say that I have now made real inroads. How? I had to remind myself that I don’t require someone to believe in or experience my day to day reality in order to make it real. I already know it is. I live it every moment of every day.

I also realize that peoples perceptions and beliefs about me and who I am are their choices, it is not my job to change their minds or convince them to love and accept me. I don’t have to beg for people’s kindness and compassion… And I won’t. Not even from the medical profession.

People who don’t really know me and who I am are free to do and think what they will. But my life is only changed and improved by what I think and believe about myself.

And there it is.

Learning how we can validate ourselves can be the single most empowering thing we can do for our illnesses and for our lives in general.

I have also valued from my partners example in this area too. He has become a very stabilizing force of self belief and self acceptance. His confidence has grown as he began taking on these challenges with me and it has become a real team effort. I marvel how he has risen to his challenges too and has never once doubted my authenticity and character.

However we begin to work on this important area the main thing is that we do begin. Again and again, for as long as it takes, until our own voice and our own beliefs become stronger and louder than anyone else’s.

… I believe in you!

Gentle hugs.

Trish.