Defining Moments

Having read a lot of articles written by, and for, the chronically ill and disabled I have noticed a lot of apologetic speech regarding our disabilities / illnesses and pushing the idea that we must not allow them to define us.

Memes constantly reminding us and disparaging us when we talk about [it] or include our illness in conversations, and acknowledging [them] as part of who we are… For to make reference to it is allowing it to define us!

It keeps cropping up everywhere… “My illness doesn’t define me…” as though we have something to be embarrassed of or must allay any fears that we need consideration for how much our lives may have changed.

I can’t speak for any other chronically ill or disabled sufferers but I find this particularly annoying and bordering on downright insulting.

I am aware that many chronically ill like to use such words and thinking. We are all different and I acknowledge everyone’s right to speak and feel about their lives in their own terms.

I am only speaking about my own thoughts on the topic.

For example, when I find my friends always talking about their jobs or their children or their studies, I don’t feel I should interrupt them or constantly remind them they should not be defined by these roles or circumstances or allow them to define them. That would be rude. In fact if I did say that I am sure I would, and should, be reminded of my need for manners and courtesy. So why isn’t it ok to speak about life as a chronically ill person and the challenges it brings with it? Apparently some roles are more tolerable than others!

I wonder why?

If something happens in our life, an event or role, that affects us so profoundly and takes a lot of our effort, emotion and energy, why is it not ok to acknowledge it or speak about it?

When I find my abilities and life so profoundly changed AND changing I feel insulted and offended when someone suggests I shouldn’t let it define me!!

I don’t see people who have served in wars or suffered losses in tragedies or crimes as being publicly rebuked for having undergone such events. They are not shamed for identifying as being veterans or survivors. Nor should they!

I have never heard of parents speaking about parenthood in a way to demean or minimize themselves. We reward people for trying to be good parents and doing their best while parenting. We don’t expect them to not talk about it or pretend it hasn’t happened. It is a part of their life that is a constant, it is ongoing and it doesn’t have an expiration time. It is a lifetime scenario.

Parenting comes with challenges, difficulties, disappointments and emotional struggles but it is far more socially acceptable to talk about or identify as, whilst these same attributes about chronic illness is something society wants us to downplay, not talk about or hide.

I really don’t understand.

Just because one is seen as far more acceptable than the other.

In fact, I would further argue that jobs, titles and parenthood are all things that people have a choice in and can choose, however chronic illness (especially debilitating illnesses) are rarely something anyone chooses.

Let me consider the word define;

define

dɪˈfʌɪn/

verb

verb: define; 3rd person present: defines; past tense: defined; past participle: defined; gerund or present participle: defining

1 1. state or describe exactly the nature, scope, or meaning of.”the contract will seek to define the client’s obligations”

2 synonyms:

3 explain, expound, interpret, elucidate, explicate, describe, clarify; Moregive the meaning of, state precisely, spell out, put into words, express in words
“the dictionary defines it as a type of pasture”
4 ◦ give the meaning of (a word or phrase), especially in a dictionary.”the dictionary defines it as ‘a type of pasture’”
◦ make up or establish the character or essence of.”for some, the football club defines their identity

There is nothing that suggests that speaking about illness or describing your experiences is derogatory in any way.

Like anyone else, many of us who are chronically ill would see ourselves in many different ways. Mothers. Fathers. Wives. Husbands. Creative. Intelligent. Loyal. Humorous. Loving. Musical. Artistic. Fun. Talkative. Deep. However there should be no shame in acknowledging how much we are shaped and changed by our illnesses and circumstances, and we should never be made to feel less because of it.

I identify as someone who has life changing illnesses AND many other attributes and I should feel no shame over any of them, and neither should any of my chronically ill brothers and sisters.

Gentle hugs,

Trish.

Being Strong.

If you are reading this post with the hope of finding more positivity and ableist guff than please look away now. Let me save you the heartache. But if you are willing to briefly explore and examine some of the underlying messages hidden behind the current phenomenon of what I call strongism and a diatribe on why I believe it is unhealthy then read on…

There are a lot of memes and an awful lot of talk these days about the strong women ideal. But what is it really? Am I the only one that isn’t sure of some of the hidden messages lurking beneath all this noise?

It seems to me that this recent phenomena, where there are a lot of slogans touting about being a strong woman suggests that such a thing is a recent movement belonging to this generation or moment in time… But I don’t believe it is a recent event at all.

I believe that strong women have existed since there were even women, and that it has been a cultural and generational perception that has hidden this fact. I can honestly say I have never met a weak woman in my entire life. I have met real women, wonderful women, beautifully imperfect women, authentic women, evolving and learning women … and I am one too.

But now I would like to examine the hidden dangers of the strong women rhetoric in the context of chronic illness.

There is this perception that only weak people develop chronic illnesses and that if you are unfortunate to identify as having a chronic illness / autoimmune disease then you are forever required to be stronger than any other person alive to compensate for this lack of health, as though it were somehow linked to a lack of character.

It is this thinking that holds many sufferers back and dehumanizes them. I say dehumanize because no living human being can be strong and happy all the time. It is not a character flaw to have an illness or disability. No woman. or man, has the power to be happy and strong all the time, or should ever be expected to be!

I believe that telling someone with a chronic illness to simply stay strong is dismissive and over simplifies the real struggle of chronic illnesses. I would rather someone say that they can’t imagine what it must be like… because they can’t!

I don’t consider myself a weak person, I don’t consider myself to be without character or intellect, so it is not a poor indictment on myself when I say I have all the range of emotions and difficulties that anyone else would if they were in my position.

Some days I hate this life. Some days I can’t bear the burdens I carry. Some days I cry constantly. Some days I don’t want to go on. Some days I want to end it all. Some days I fear what lies ahead. Some days I feel I have been dealt a terrible hand in life. Does that make me a weak person? Not even close!!!

It makes me human.

I feel as though anyone else would if they woke up one day, in the prime of their life, to the worst hangover they have ever known, plus the worst flu they had ever had and without any control over their bodily functions or health AND … they never got better. And may remain this way perhaps until they die.

But I am strong. And so is everyone else with chronic illness. And we keep trying to keep going against these odds and hardships. Everyday. Every moment of the day.

We all have strong moments where we manage to do things we never thought we could do. I do them all the time. And I have weak moments where I feel close to breaking.

I don’t have to be silent about my pain to prove I am a strong person and that is what I want the world, and my fellow chronic brothers and sisters to embrace and remember.

Gentle hugs.

Trish.

A New Compass

For the past 10 years I have marveled at what each year has bought us. I have always tended to reflect on these things and wonder how and why they happen. But then it dawned on me…

With each new year we will never know what is coming or who will enter our lives, for better or worse. There is no end to the possibilities of what can and will happen. That’s just life.

This year a challenging and difficult person and situation reminded me what, at this age, I was willing to endure and accept. It surprised me some of the answers that came to me and how quickly they came. Especially now.

Despite being ill and having a decreased circle of friends, I realized I didn’t have to accept just anyone or anything. In fact I feel even more confident that I would prefer to have very few people in my life and yet have more quality relationships.

I had thought for awhile that I needed to accept anything that came my way because my health and abilities were compromised. I realize how ridiculous this logic is and how detrimental it is.

The longer I have been ill the more I have come to value the peace and enjoyment I can get from quality relationships with people and myself. How important it is that relationships aren’t feeling like a burden or one sided.

If I start to doubt where I stand, feel the pressure of demands and requirements on my time and health, feel stressed or not valued then alarm bells will start to sound off. That is my inner voice telling me it’s time to let go. And I listen.

There really is no way of knowing what will happen from year to year. Some years we have struggled financially. Some years we have struggled physically. Some years we have struggled emotionally. Unforeseen things come along to test us and make us work harder to cope and this will never stop until we die.

If we are waiting for life to improve or become less taxing we run the risk of missing life entirely. I once read that life is complete chaos. I agree it is almost completely chaotic but there are some other important things too, like love, peace, laughter, inspiration, creativity, learning and joy.

Those moments are precious no matter how healthy, rich, smart and able we may be.

I feel like life has always tested my coping skills and most times I felt I was failing. But when I look back on what I have coped with, endured and learned from I can’t help but marvel.

I have known a lot of people who, when I speak to them, will spend almost the entire time talking and focusing on themselves and their needs, never really interested in what I may think or have experienced, I used to put up with those people but now I don’t feel the requirement to do so.

I used to feel disappointments, injustices and rudeness so deeply and for a long time, now I am far more resilient. They come and then they go just as quickly. I used to feel the constant pressure to be perfect or be better and better at everything… now I realize that I don’t have to conform and chase such unrealistic ideals anymore.

Has all this growth and understanding come because I have been so ill? I like to think it has been instrumental in me being able to master these things. It has certainly contributed a great deal. There always seems to be some good in almost every situation.

My relationship with myself and my husband has grown and strengthened during the years that my autoimmune diseases have taken over a lot of my life and abilities, and I am more surprised and grateful than I can ever express.

At this time of my life I am better able to see what really matters and use that as a compass for coping with whatever and whoever comes along, and that is something that I am most proud of.

Gentle hugs,

Trish.

The Flow On Effect

Not many people out there will understand what it is like to manage to do things when you have Autoimmune disease/s, except other fighters.

When we get sick or our health declines (slowly or quickly) it doesn’t take away our will to do things with it. That can even grow stronger inside us.

It is one of the hardest facts, and the most common thing that healthy people will almost always take for granted, which is that we want so desperately to be able to achieve things and accomplish goals.

Some of the most talented, creative, motivated and intelligent people I know battle these diseases and yet it is rarely recognized, the tremendous difficulties we face each day; even by health care professions.

Everything we do, or try to do, has a price and a toll. We rarely ever tell people these facts and we do our best to hide and conceal it from the world.

I recently connected with a talented interior designer and artist who also has Sjogrens and SLE. Like many of us who are creative, she battles the fatigue and the pain to do the things she loves. But undoubtedly there is a price to pay for doing these beautiful things and she pays that price.

My artwork and blogging causes pain and vision problems. My gardening causes pain and sun exposure, which in turn takes a long time to recover from. But the alternative is painful too.

Everything that you can imagine doing causes a flow on effect which ordinary people will not be able to conceive let alone appreciate. Most people don’t want to know.

Our renovations, which has been a huge undertaking for us, has also been some of the hardest times for so many different reasons.

In order to change the kitchen so that I will be able to move around it more easily we have had to pack the entire kitchen into boxes that have been piling up in the house. This in turn means that I can’t move my walker or wheelchair around the house, which means that I have been confined to one area of the house. This has been the situation for over a month now and it has been so hard. Moving around boxes has meant the back pain that I had recently undergone spinal injections for has returned, which means I spent another birthday in awful pain. It’s been heartbreaking. Everything has a price. The flow on

Just like a small stream can lead to a mighty river!

Delays in painting has seen me attempting to do some painting myself from the chair and this has been excruciatingly painful to my hands, hips, back and vision. But I just can’t let my husband do it all himself, so I try to push through, and then return to bed in tears, pain, tremor and spasms. One day like this means I will suffer all day and night for weeks, which means extra pressure on every other daily activity, like showering.

Everything has a price. A very high price.

Recently an autoimmune friend spent a day at the beach with her precious family which caused her a week of pain and suffering, but I have no doubt she did it all for the family she loves and for a moment to feel alive. This is why we do it. To feel some life and a little pleasure that so many people take for granted, and we also do it for the people we love so desperately.

My husband and I have often discussed the terrible price I pay for doing even the simplest of things, perhaps we will always have this discussion and debate about how to pace myself better. It is always a difficult topic as the line keeps moving everyday and is so unpredictable.

However much I suffer and struggle, however much I may cry and battle, the truth is at the end of the day I am the type of person who always looks back and regrets the things I didn’t do rather than the things I did do.

Perhaps this is a fatal flaw in my personality and reasoning, and also one of my hardest battles with chronic illness?

I hope that one day I shall find an answer it all, in the meantime I am so grateful for the fact I am not alone.

Gentle hugs.

Trish.

The Project – Part two

When I started out to change and redecorate the house I did so with the best of intentions. It’s important for me to remember this now as things are getting so very difficult, and at times stressful and heartbreaking.

It’s easy to want to give up.

I often think back to my career as a project manager and I have reflected on how much things have changed in such a relatively short period of time since I was a professional career woman. …Tradesmen and contractors have most certainly changed!

I always knew that it was going to be a case of planning, managing and imaging all that would be happening and yet still try to cope with a very difficult and unpredictable body, but I naively didn’t think it was going to be this difficult.

Thankfully we do still have a roof over our heads so there is nothing that can’t be postponed or rearranged when I am at my worst. We don’t have pressing deadlines to meet. Thank goodness!

Although I have found this period to be a highly creative time and even has an element of excitement about what the finished product will look and feel like, it has also been incredibly demanding and stressful.

Why? In one word. People.

I guess I was all too aware of how the caring professions had changed over the past decade but the changes in customer services, trades and supply have certainly changed so much too.

We have encountered the most unprofessional behaviors and mystifying attitudes that I have ever witnessed and as a result we have had to attempt to take on a lot more things ourselves. Things we didn’t imagine having to do.

I have to say that being placed back in the world of people again has been a strange experience. I have felt even more different, disconnected and removed from the outside world, which is a very unexpected result. Especially to this degree.

There appears to be no more customer focus, work ethic or motivation out there anymore. Sadly. Tradesman continually never turned up, not organized themselves, not consulted with us, not listened, not shown any respect or courtesy, but, always demanded payment up front and on time… It’s unexplainable.

There is this pervading sense of entitlement in almost every sector now. At this time it is like you must do everything to please everyone, regardless of the personal costs. It seems things have grown much worse out there, overnight.

Each day that we have had to deal with the most appalling standards of behavior I have also settled in each night to check social media only to read how the chronically ill should be more positive, more motivational and much less needy!

I am truly lost for words.

The irony is that those with less painful burdens and challenges are often the most self absorbed, self involved and entitled. But why?

I have been left with such a mixture of feelings from these experiences but I also know I have learned a lot too… I should say I am learning a lot.

A quick look around has shown me that those of us with chronic illness have nothing to be ashamed of and we do an amazing job at coping and rarely burden ourselves on others or take others for granted; certainly not as much as the average person out there does anyway.

We have nothing to apologize for and certainly don’t deserve the labels that many out there have imposed upon us.

A quick look around at the world at large has helped relieve me from this impression that we do work just as hard, if not harder, than the average person on the street, and I am prouder than ever of my chronically ill and Autoimmune brothers and sisters… More than words could say.

When the house is finished people may see the changes that have taken place, but they will never know the true cost and hardships encountered to make even the smallest of changes. The real hard work and suffering will only be visible to my husband and I, and it reminds me yet again of the ordeals those with illnesses go through to achieve anything in this life.

I am so proud of you all!

Gentle hugs,

Trish

The End in FriENDships

We never forge a friendship thinking that it has an expiration date, but sadly many do.

I don’t think anyone ever thinks about endings or we couldn’t truly put in the time, effort and emotions needed to become a friend. However, sometimes they can run their course and fizzle out, and sometimes they end under sudden and sadder circumstances.

However I believe that they should always be mutually beneficial and satisfying or else they can not and will not survive.

Which ever way a friendship ends it isn’t a nice experience… so how do we survive a friendship ending?

Firstly, I don’t care what age you are, it’s never nice or pleasant ending a friendship, especially one which hasn’t been as rewarding as you had hoped.

Today as I sit here I realize that the only way I have been able to end a friendship is in a way that is true to my nature. Ie. As a caring person, I will be inclined to let go with the intension of making life better for both parties… I wish the other person well, and I will try to remember the good and happier events. I truly hope that they will find happiness in their future.

Often it isn’t even necessary to say goodbye to some friendships as it can just seem as though it trickles out of its own accord.

I favour the method that has the least amount of drama these days because I just don’t have the energy to spare.

I have become better at not doubting myself and questioning my worth as I once did when friendships ended. I now tend to see it is as another life event and if it was truly meant to be it would still be thriving.

I guess it’s more of a “it is what it is…” mentality… We can and will go on!

Oddly enough, as I grow older the friendships that were made as a younger person have seemed to endure longer and are still alive compared to those made more recently. I guess older friendships have had far more opportunities to weather storms and to develop.

I also find that I no longer equate my value by how many friends I have and how popular I am. I find now that a handful of true friends are far more rewarding than the constant attention and validation of a multitude of people.

Friendships are never meant to be a popularity contest but rather a true appreciation of who we truly are. Including our flaws and challenges too!

As I have learned to truly accept and appreciate myself I no longer need others to fill that gap. Their endorsements are no longer required but a mutual respect and connection is now the foundation of a stronger and longer lasting bond.

When I first became unwell It was easy to feel that my friendship was no longer worthwhile and valuable and I felt I would have to accept anything that was offered, but since my confidence has begun to slowly return, I have been able to better gauge my own worth, probably now more than ever before!

In the past I felt as though I was always giving and trying to please others, but when you find yourself struggling to manage every moment of your life you are far less inclined to cater to everybody’s demands and expectations.

I am reminded that it is truly possible to make friends as a chronically ill person, and we don’t have to settle simply because we have unpredictable and challenging bodies.

I believe that if I had to end my life with only one true friend, then I would be completely happy and appreciative of that one special person. Always.

Gentle hugs,

Trish