The Voice.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Gentle hugs,

Trish.

Different views

I recently watched an interesting and informative video about parents who were raising an Autistic child. They explained that in order to best help their son they had to look at the world from his perspective.

They went on to say that by seeing the world through his eyes they had a better appreciation for his challenges and were able to help him more. It also made them more grateful for their roles and helped them understand how important their behavior was when they were around him. They also said how rewarding it was to have him in their lives.

People watching these videos, including myself, get a profound sense of admiration and appreciation for this family and we feel it opens our hearts and minds when we watch such informative videos. I felt like I had grown in many ways.

We see a family joined by love and appreciating every moment and every little thing together… and then I ask, why doesn’t the world see people with autoimmune diseases and invisible illnesses the same way?

After I watched the video and was touched by the plight of this family it occurred to me that there are no videos of family and friends doing or saying the same of their chronically ill loved ones.

Why?

If we replaced the child in this scenario with someone with MS or Lupus (or any chronic illness) would it still be acceptable?

Would anyone listen as a man said how he felt like a better person when he spent time helping his sick wife or marvel as a woman explained how seeing the world through her (autoimmune) brothers eyes had given her new insights and love? Would anyone be interested in watching such a video? … I wonder.

And then I ask why wouldn’t anyone want to see the world through the eyes of someone who fights hard and faces challenges that are so difficult, despite being unseen? Why wouldn’t anyone admire their loved ones for fighting on and facing difficult hurdles and pain? Why wouldn’t someone feel blessed knowing that despite everything their friend/ loved one goes through that they still keep doing their best to part of the world, in whatever way they can be?

It is for these reasons that I blog about autoimmune diseases and advocate for respect and dignity for sufferers… because we deserve nothing less.

Gentle hugs,

Trish

A Case Of Realism

It is generally regarded that we have only two options available to us when it comes to attitude, that being pessimism or optimism. For a long time now I have rejected this duality as I believe we are far more complex creatures and that life is never simply black and white.

In fact I have always found it incredibly uncomfortable being around people with black and white thinking as they tend to have some sort of god complex, a very narrow view of life and often are very inexperienced about the world and the many different people in it.

Over the years I have developed an increasing awareness and appreciation for being a realist.

To my mind realists are rare creatures that can bring a brand of reasoning to a situation where they are not tainted by the constant need to be positive or negative. They are arbiters of impartial thinking and reasoning; Especially in this positivity obsessed world.

Realism allows us to draw from our experiences and understanding, whilst still reminding us that we can’t know all the answers in life and that some things are beyond our understanding. I like to use realistic thinking when it comes to people and situations as it has aided me much more than either optimism or pessimism has. It also allows me to build better plans for the future.

Proponents of realistic thinking have gained the unnecessary label of being buzz kills by society and tend to be rejected by both the optimists and the pessimists due to not following either paths. However I find the benefits far outweigh the drawbacks when it comes to living a fuller life.

realism is also the peaceful and less emotional option that people find hard to embrace. For example, pessimists must constantly endure living life with drama and sadness by their side. They seem to live in constant fear and disappointment in life events and people. Conversely, optimism requires large amounts of energy and enthusiasm to constantly put them in a state of joy and positivity. I have no doubt that this type of elated state taps even the most stoic optimist and then what? What if life doesn’t always make you the winner or the most enjoyable person at the table or the Centre of attention?

Depression and existential crisis must constantly loom for the optimist and they probably have to fight harder than most people when those feeling come along.

Which is why I thoroughly enjoy the benefits of looking at this life in a peaceful and thoughtful way. Realism offers far more comfort than any other branch of thinking for me. It is especially helpful as someone who is health challenged too! I don’t have to constantly coerce myself into fitting in with everyone else, or show that I am trying to reject all my boundaries or challenges with a sunny disposition that is pleasing to everyone else. No. I can navigate my life in a peaceful way knowing I only have to take one step at a time to be valid.

It helps me prepare for the future in ways that more optimistic people never seem to achieve. I don’t have to cling to the best case scenarios or worst case scenarios. I am free to take things one day at a time. I get to say things like “I really don’t know, I can only wait and see. ”

In short, I don’t have to burden myself with unhelpful thinking or expectations.

Being a realist has made a huge difference to relationships. I no longer cling to one sided or difficult relationships anymore. I also don’t have to make excuses for my behavior or for others. I don’t have to create a narrative of my life which conforms to what people expect or want because I am firmly ensconced with various facts and realities.

The downside is that many optimists and everyday people can make the wrongful assumption that realists are just pessimists in disguise. Even doctors can be quick to think you must be depressed simply because you reject their appraisal on your life or your treatment and favor a more realistic approach. Being a realistic patient and an advocate for your own life may find you having to face a lot of unnecessary ignorance and bias but because I take the position of a realist it helps that I don’t have to expend vast amounts of emotional or physical energy defending my own position or beliefs because I find being a realist is far more peaceful.

Also, I don’t need people to agree with me or my thinking thus I don’t feel validated or disappointed with how people respond. Realistically people can respond in countless different ways that really has more to do with them than it has to do with me. Realists can see behaviors more clearly and without ego or narcissistic views distorting our experiences.

We can judge less and learn more.

Peace and acceptance is at the core of my realistic perspective and it allows me to continue through my life in ways that are not governed by emotions or stressful thoughts. There is an old saying that every day is a gift and I believe a person who is comfortable at living life moment to moment without emotional projection or bias allows us to enjoy those moments for what they truly are.

Gentle hugs,

Trish

The Story So Far …

It’s early into the year and although it’s been a mixed bag already somethings feel very different. I feel like there have been some real fundamental shifts and I am really very pleased.

What is different?

Well for a start I really feel such peace despite some of the challenges that still remain from past years. Despite my health still being up and down, and not where I would like to be, I don’t feel anywhere near as disappointed or stressed as I might once have been. I feel quite calm in fact. I have even been laughing a lot, which is much more in line with my true self. My previous self.

I am really pleased.

I can only attribute much of this current mood and attitude to the lessons learned from last year. A long talk with my husband about how I have taken the events from last year and processed them has made us both feel a lot stronger. It’s been a shift in both of us really.

I spoke with my husband about how I feel far less annoyed and frustrated by my harder days and I now simply do what is needed with a lighter heart… and far less self punishment. I haven’t looked down upon my body’s aches and pains as often as I normally do.

Could this be real progress?

I told my husband about my new confidence in being able to say no more and take being told no in a much more peaceful way. I am far less anxious about time lines and when things can be be done! This new patience is quite a milestone for me.

I talked about the things I wanted to achieve this year and the way I hoped to achieve them. It feels like I am being far more kinder on myself and my expectations. I also explained how I intend to view the part that my husband plays more differently. In the past I felt constant guilt at having to ask him to take on certain tasks and roles but for some reason I don’t feel that so deeply anymore. Progress!

After all these years I feel like I am no longer over thinking how to try and correct my body and what it’s doing. I am not going through my usual loop of 1. Should I change diet again? 2. Should I add a supplement again? 3. Should I do more research about new therapies? 4. Should I worry about what is going on internally? Or the constant worry of … 5, Am I doing enough?

Nope. All those thoughts have almost completely disappeared and I am living differently from moment to moment and it feels good.

I am also almost completely disinterested in other people’s opinions and judgements of my life and this too feels completely amazing.

The way I am dressing has changed. The way I look at things has changed significantly. And the way I intend to move forward through this year has changed.

It’s not just a case of ‘new year, new me‘ it’s far more significant than that, It’s real!

For example, the other day I missed a call from a friend and in the past it would have triggered a whole painful inner dialogue about how bad I felt not being able to talk to them. I once worried that they would think me rude. I once worried about how long it had been since we spoke and how the person might give up on our friendship, despite my deep affection for them. I once worried about how or when I could return the call in order to reassure them and let them know I care for them and so on and so forth… Not anymore. Now I simply smiled at the idea that after all these years we still care and think of each other. It felt good. And that’s all I thought about that. Peace.

Last year both my husband and I noticed the very real effects of time on our bodies and how our age was now much more visible. We look older. We have more grey hairs. We have extra weight. We have wrinkles. But we both feel completely okay with it. Truly. It actually feels as though this is real milestone for us both. A weight has been removed from our shoulders. Unlike many of our older friends and associates who have thrown themselves into gyms, beauticians, plastic surgeries, therapies and various other inspirational searching and life overhauls, we actually feel like we are truly at peace with our changing bodies, changing lives and changing goals. Peace.

Granted, we have decided to make some diet changes in the amount of meats and foods we eat, and have both agreed we don’t want to have official mealtimes per se but rather to have healthier and more frequent snacks throughout the day, this however motivated more by environmental thinking and our wish to do constructive things for the planet.

Another huge change has been the way I used to constantly try to fit in with the rest of the worlds living and sleeping patterns. I have finally given up on this constant guilt and struggle. My health has constantly put me at odds with the worlds clock and I have spent so many years beating myself up about it all. Trying to sleep 8 hours every night between the hours of 10 pm and 6 am just doesn’t work for me and I have finally accepted this. It’s a real break through for me and for us. I won’t feel guilty about not meeting others time scale or clocks. I am at peace at existing outside this.

Many times I can’t sleep for pain, I have interrupted sleep due to pain and various other symptoms, or I have such fatigue that I can scarcely move and therefore must sleep as often as I can. I don’t have a regular pattern despite the world (and doctors) constantly harping on about it. I really think it just shows complete lack of understanding on their part. I no longer want to feel guilty and angry at myself (and my life), so I don’t!

Now I sleep when I can and when I have to. I am resigned to not beat myself up endlessly. End of story. And it feels good.

These factors have all combined to put me in a new place this year. Unlike last year when I was project driven and desperately making timetables, I may still have goals for this year but regard them in very different ways. Good ways. Healthy ways.

It feels good.

It also has reminded me that despite being different from almost everyone else now, despite living differently from almost everyone else and despite seeing the world far more differently than many others out there, we are still able to feel good about ourselves and feel peace in ways that almost every other person who doesn’t have constant health challenges may ever understand or achieve… and it feels good!

Gentle hugs,

Trish

Super Spoon Merchandise

Years ago I decided I wanted to do something to try and raise money for research and support for those fighting Autoimmune diseases.

Thus Super Spoonie was born!

I would like to take this opportunity to once again promote the site and hope that people will take it to their hearts as all profits will be donated.

I enlisted the help of an amazing fellow fighter to put the site together and she has done amazing things.

Take the time to check it out for yourself and if you can, please spread the word.

http://superspoonie.mymerchstore.com.au/

Many thanks!

Trish

Selling The Drama

Almost anything and everything can make life difficult these days and so it becomes very important where you invest your time and energy, especially when you don’t have much to spare.

Years ago I found myself inviting or allowing more drama into my life than I needed. I became embroiled in peoples private and public dramas which invariably had a price to pay. These days I have built an inner radar for such things so I can detect such dramas beforehand. An early warning system.

As we get older, and especially when we have health challenges, it becomes very clear what is important in life and what really matters. At least it did to me. I truly believe that there is a lot of unnecessary drama and junk floating around these days and particularly in social media.

In my case I have put a high priority on peace and coping. I work very hard to ensure that this is my goal in everything I do and all those I interact with. I consciously aim to give myself the gift of peace and confidence in my daily life as this is the best gift I can give my health and my life.

Although I freely admit there is a percentage of stress and challenge that we simply can’t avoid in life, I also believe there is a lot we can avoid. People and places that I know to be potentially stressful, challenging or prone to drama I simply avoid like the plague! No matter who they are.

For example, if there is a doctor that just causes so much tension or unease I will find another doctor. If it is a friend that takes more than they give I simply choose to step out of that relationship. If it’s a family member that just enjoys competing, arguing and guilting then it’s time to let that one go too. I just don’t have anytime for it anymore. Nor does my body.

I have been aware that often when it comes to bringing drama and stress into life, those that bring it generally don’t have the slightest concern or regard for how it impacts me (or any person who is health challenged). They simply spread their unease, guilt, mind games, anger, passive aggressive behaviors and angst (to name but a few) and then they casually move on and leave you to pick up the bill. I believe that someone who truly cares for you and your relationship would want to work hard with you to make sure the relationship supported both of you and helped make each other stronger by observing and being aware of the way you both interact and work through issues together. Less caring people will generally not consider the affect they have or the impact they make on your life. They won’t even give it a second thought.

So now I have a list of people that I give my time and energy to and I completely give them my love and support.. I don’t buy in to the guff and waste my loyalty to friends and family members if all you have to show for it is a list of difficult times and stressful exchanges.

I simply move on.

When moving on, however, I ensure that I do so with the most sincere and respectful intentions. I seek to genuinely wish them well and to not talk or think ill of them again. It’s done. It’s a releasing with positive wishes as opposed to holding a grudge or unresolved feelings forever. To hold grudges and bad blood is another form of wasted energy that I simply can’t and won’t afford.

At this time of life I no longer invite drama and I think carefully before becoming involved in someone else’s drama. If a friend/family member appears to have a genuine struggle and needs support and encouragement from me, then I will give them all that I have to spare. I will do all I can for that person and for that relationship. Generally such deserving people have done quite a lot for themselves in order to tackle the problem and I honour them and their challenges with my unwavering support and loyalty. These are the essential criteria now.

I also look for patterns in behaviors. For example if it appears that one person (friend or family) continually seems to have the same recurring issues and drama or always needs attention and assistance for their predicaments then I start to suspect that my help and investment will not be appreciated or productive. I also assess whether this is a one sided situation and if support or assistance goes in one direction and not the other! That is a definite deal breaker for me now.

Perhaps in the past these things made me feel wanted or helpful in some respects but my eyes have been opened to some of the real effects and results of such behaviors. The fact is that I am loyal, useful, helpful and loving and I need to take care of how I utilize these qualities.

I have also had to accept that although there are many causes in the world it stands to reason that I will not be able to cure or solve them all. No one can. I shouldn’t place that burden on myself. Such thinking can spark off a emotional crisis in me and I begin to feel defeated and ineffectual. I no longer think that this is helpful and I acknowledge that I am not a super human being or martyr for every social problem out there. I have my limits and I respect them.

Today I pick my battles. I show some discretion in what I want to put my emotions and time into. I prioritize my battles according to my abilities and health. The result of this is that instead of being drained and frustrated I can start to feel a little better about myself and what I can bring to each situation.

I recognize that these days there is just no avoiding some problems and stresses but I also am better at recognizing my own limitations and issues which I really don’t need to invest in or get hung up on.

I see this now as a form of self care and self love and no longer consider it a failing in me.

Being a very caring and empathic person can make you feel like you carry a target of your back and that you are an open wound for the troubles of the world. It is a real effort to push back and to choose more wisely where to spread that precious love and energy.

Ironically, in my circumstances, it took becoming increasingly ill and struggling myself to learn how best to show support and show my concern for others. A lesson I am constantly grateful for.

Gentle hugs,

Trish

Seasonal Changes

Summer has historically been the hardest for me my entire life and today I was thinking back on how my struggles with this season has changed over the years.

It used to be a time when I simply loathed the searing heat and the inability to spend anytime out in the sun without burning and melting, these days the heat brings with it so many more challenges!

Although, summer does mean an improvement in the torturous joint aches which comes from the cold and damp of winter, the fact is that heat is also a powerful enemy now too.

There is a range of temperatures and conditions where I can have my best chances of relief from the effects of these illnesses but once that range is exceeded then things start to go downhill, fast.

Arguably one of the more difficult effects of the heat is that it now causes me to quickly lose my vision and things start to become little more than a blur. It can be extremely frightening but I have learned that this is just the way it goes, my vision will slowly improve as I cool down and rest but it always frightens me. Always.

I will also start to lose control over my limbs and they will feel more like awkward, clumsy, heavy weights and I consider them little more than painful tripping hazards. I start to walk like I am wearing flippers and my muscles feel like they are filled hot, painful cement… And they ache terribly! They take hours of resting and sleeping, sometimes days, before they will give me some release and before I can move again.

Too much heat and I will struggle with my balance even more. It will be completely gone and I will feel like I am being spun around and free falling, even when I am lying down.

Too much heat and the fatigue I experience is the most wretched imaginable. It is often the hardest and worst symptom of all! I described it recently as though you have been dumped in the middle of an angry ocean and left to tread water for a month. The fatigue you are fighting is constantly dragging you down and threatening to drown you unless you fight through it. It becomes hard to breathe. Hard to lift your limbs. Hard to swallow. Hard to move. Sleeping and resting becomes the only things I can do, and no amount of sleep or rest will ever restore me to strength. It simply sustains me.

Summer also means headaches and migraines. Cluster headaches are more painful than most people can comprehend. They are not the things where a mild pain killer and a cup of tea can fix. Far from it. They are like knives and picks buried deep into your skull and threatening to rip your brain apart. Nauseating and unrelenting.

Although summer is traditionally a time of holidays, parties, celebrating and activity for many, the truth is that summer isn’t kind for many and I am one of them.

Don’t get me wrong, I love many of the joys that come from bright and sunny days. The flowers, the clear skies, the hive of activity everywhere. It’s wonderful. I only wish I could take part in it much more! But I also grab hold of my better days and do all I can to enjoy every second of them! I feel like a child on Christmas Day on those better days!

Summer sunshine always tends to lift the spirits and make life seem brighter and I find that it is definitely true for me too. People tend to smile a lot more and just feel a lightness when we look out the window and see a bright and clear day staring back at you. I still love looking out the windows and being greeted with bright and warm sunshine. I am lucky that my house has numerous big windows and skylights! I can bathe in the brightness from anywhere in the house but I also have air conditioning blowing much needed relief to keep the temperatures within a manageable range. When the climate control breaks down or we have electricity faults then I brace myself for the worst!

The other day I experienced one of my better days and so I seized the chance to go outside and take in the air and wonderful breeze from the ocean. It was pure happiness. The flowers were glowing and my furry companions were out investigating every corner of our garden. This is my idea of bliss. I sat in my swing shaded by my native plants and I soaked every moment in. Pure bliss.

Every season means something different for people like me and what we will have to cope with and endure. From the cold and damp to the heat and exhaustion, I feel vulnerable to the elements, but I have also learned to try not to dwell on what I can’t change. There is nowhere on earth that offers the optimum climate for Autoimmune illnesses throughout the entire year. Nowhere. And sadly the medical profession seems to not understand the extent to which climate and weather affects our daily challenges. They don’t comprehend

Because, regrettably, I have a list of autoimmune illnesses and various other health struggles, I feel like the battles are many and incredibly complicated as well as being poorly understood. But I have also reached a point that I feel less inclined to explain my battles and I rather try to use my energy to endure them.

Don’t get me wrong, every chance I get I laugh, smile, enjoy, create, live and try to be part of this world. It will always be my constant focus and goal, to live a life I am proud of. I am sure that this is what binds us all. Every autoimmune and chronic sufferer out there, no matter what the season or circumstance! We want to taste life and not simply exist.

No matter what the season there will always be a battle which comes along with the weather and seasonal changes. Sometimes during the hardest of times in summer I will think of the joy that Autumn may have in store and the possibilities of relief from some of these challenges, however I also don’t want to spend my life always waiting for another season to come along and rescue me.

Winter will have its own painful battles in store and I will be forced to look out on cold, damp and dark days again and feeling every joint and muscle crying out in hot searing pain.

It seems to me that life is made up of many changing seasons and the challenges and events that come along with them. Although they may be far more difficult to manage and cope with when you have chronic health and pain, nevertheless we have no choice but to face them as best we can.

I am always painfully aware that we have limited numbers of seasons for which we have to make a life from. I can’t deny that there is a great deal of me that feels particularly saddened by the knowledge that most seasons of my life will be filled with battles and struggles that most people my age will never comprehend, almost as though so much life will been taken away from me. Snatched away. So many days I feel Ike a prisoner behind windows and inside a tortuous body, it is in those times I must force myself to remember the happy moments from each season and some of the lessons learned in each of the years.

Looking back I have seen quite a few summers and winters now, and I don’t know how many I may have to come, but I have to be able to make peace with my best days and my hardest and that is one thing that never changes no matter what the season.

Gentle hugs,

Trish.