Listening To Yourself

From the moment we are born we are inundated with messages and instructions. What to do. When to do it. Who to please. How to live. What is important. What to buy. How to feel. How to live. It never stops.

We are groomed and shaped and moulded.

Our parents, our family, our peers, media, educators… we are constantly being told what we should be and how we should be. Sometimes we don’t even realize it. We wear so many masks for so many situations and people. It’s truly exhausting.

I know I did it for so long!

Until one day I became faced with situations that I could not understand and I was becoming someone I could not understand or stop. It was not what I wanted or anyone else wanted. I was so scared.

Firstly my employers didn’t want an ill employee. Then my family didn’t want an ill relative. Then everyone else seemed to form their own perceptions and expectations of me. It was heartbreaking and humiliating.

If I continued to listen to all of them I would be convinced I was meaningless, useless and embarrassing. Perhaps I did listen to them for awhile. Maybe far too long.

As the world fell away I was left with my own thoughts and voices and that’s when some very new messages started to take shape.

You aren’t useless. You aren’t embarrassing. You aren’t worthless. You are still a person. You still have value. You are worthy. You still deserve love. You didn’t do anything wrong!

All these thoughts started to slowly bubble up to the surface. Slowly. When I started listening to me.

Some of the hardest things about getting sick when you are adult is that you have to remake yourself. You have to rediscover yourself. And you have to listen to yourself first.

When I sit and really think about it I realize the negative messages I hear in my head were put there by someone else, not me. They are the voices of parents, family members, strangers and people who don’t really know the person I am inside or what I am going through.

My own voice is like my true nature, caring, compassionate, loving, intelligent, kind, empathic and good.

It’s not cruel and insensitive. It’s not competitive and demanding. It’s not self focused and rude. The real me is in here and trying to hold on to hope and love. It’s trying to cope and help. It’s trying to build a life and bring some self respect to all that is happening.

Listening to our true voice is one of the hardest skills to learn and nurture but no one will ever know us like we do and we owe it to ourselves to discover who we really are, even if we are sharing this life with some very difficult diseases.

Gentle hugs,


A Wish

If today finds you in pain, may you also find some small amount of peace within those 24 hours… No matter how small.

If your life feels cold and lonely may you know we are all here, all over the world, an invisible family standing beside you with arms ready to catch you.

When there are those that doubt you or ignore your struggle, please remember that their ignorance is not your story or your truth. Your worth goes much deeper than their lack of compassion.

If your body hurts so much that you feel empty and without hope, remember that your life has meaning and that you have equal importance as anyone else alive. We don’t get to choose some of our battles in life. But we can choose how we see ourselves.

When important events or days pass and you are not able to celebrate physically like you once did, celebrate emotionally. Connect with the most precious parts of you and honor yourself.

Remember that you have pushed, hurt, struggled, fought and suffered to stay part of this world and part of lives, more than almost anyone else alive does, or may ever have to, and that makes you remarkable not expendable. That makes you a fighter not a failure. That makes you amazing and not a burden.

You are a star against the darkest backdrop and times, but you shine amongst the vastness of humanity.

Gentle hugs,


Opened Eyes.

The last ten years have been a real revelation for me. I can barely find the words to describe all that I now see and feel since my life changed forever. Funny what being stripped down and turned upside down will do. Adversity is a powerful teacher.

I know many people who have faced near death experiences or tragedy and come away thinking that they need to spend the rest of their lives doing all they can for themselves but I disagree. I think this thinking is misleading and can be harmful in many ways.

Here is why.

I see people in completely different ways now and I can’t help but see the world in different ways too.

I am more aware of the suffering, the ignorance and the attitudes that dominate the social landscapes.

I have to admit that I don’t share a particularly high opinion of where the world is heading.., perhaps I am alone in this? I don’t think I am.

I have watched our political leaders and their social policies. I see the impacts we have made and the devastation we have wreaked on the earth. I see the everyday person becoming colder, more indifferent and self absorbed. It truly saddens me.

There is nothing like the eyes of the ill, hurt and disabled, we see what many cannot, but it comes at such a high price!

The social networks and familial bonds that we were told about and raised into are far more tenuous then we were led to believe, and the world as we know it is far more fragile and broken than we were ever shown or taught.

When we start looking with our own eyes and heart, and not through social media, tabloids and politics, we can easily see the world more clearly; if we dare.

It’s not a pretty sight.

I see people judging, competing, degrading, hurting and abandoning each other. I see a world changing rapidly and the part that humans play in its demise.

It’s hard to look at. It’s hard to watch. It’s hard to acknowledge… and it’s much harder to fix.

But I also believe that is our sole purpose as human beings in as much as we are the caretakers of the planet and each other… And we are failing miserably. All of us.

We have devised a million ways to assuage our feelings and to deny our responsibilities. We have constructed social personas and self absorbed goals to make it easier for us to look away. We hope we can find validation and credibility in being richer, thinner, stronger, faster, prettier, more popular, smarter, more famous and amassing things. But I believe all these things simply distract us from our true purpose in life. Caretaker for the world and each other.

If we haven’t tried to do something to leave this world a better place than when we entered it than what has been the point of our existence?

We all share this duty. It cannot be delegated. It can not be avoided. And it should be an honor.

As well as what we have done for our own advancement we should be asking ourselves what have I done done for this world and my fellow human beings.

History has a way of forgetting even the greatest rulers and even the most popular and wealthiest of our times, but the earth never forgets the effects of our actions and the impacts we leave. That is where our true signature lies.

We are all caretakers for this planet and each other and we can make a small difference every day … most importantly though we should make this our daily goal.

Gentle hugs,


The Fear

I remember as a younger person I was more inclined to put myself in situations that tested me and made me face a lot of my fears.

I even enjoyed it!

Was it because I didn’t think about the consequences? Possibly. But I also felt (perhaps naively) that I would be able cope with whatever resulted.

I look back on this now and ask why has so much changed? Why have I changed so much?

Today everything I do has a toll and a price to pay. The types of consequences that are very real, far reaching and painful. Therefore I am far more fearful of things now than I ever used to be. It has changed me completely!

As I lay here today I am reaping the pain and disabilities that an hour or two in the garden several days ago have bought on. My feet hurt from walking to the bathroom. My back aches from spasms, disc degeneration and nerve pain that I don’t even understand how this has happened. They are just more symptoms added to the pile.

Not only do my actions have consequences but there are things that are happening that I have no control over or influence on. I must pay for other people’s actions and choices also. I must endure it all regardless.

It teaches me to worry and to fear what lays ahead in almost every situation imaginable. It has robbed me of my former self confidence and independence.

I know that there are many out there who say that they do not worry about the future and things that they can’t foresee. It is wonderful advice and I truly wish I were more like that. Truly. Perhaps I can be one day. But I am not there now.

I have never felt ok about having to spend such huge amounts of my life in a bed or restrained by my body. Never.

I am sure I am not alone in this.

Even though I know it is going to cause terrible pain, weakness, burning, aching and discomfort I will still try to work the muscles I have left and use the joints that hurt constantly.

I fear the day I may need surgery!

I noticed how long it took for my bruises and gashes to heal from my last fall. They are still healing now! How long would a hip replacement or spinal fusion take?!

The system has been breaking down and I don’t want to put more load on it than I absolutely have to… this is not like the person I once was. I would have taken it in my stride.

I feel far more vulnerable and fragile. The emotional repercussions of these diseases can never truly be measured and are constantly overlooked and ignored.

But the fear is real.

On the positive side I no longer worry about the small and petty things in life. The realities of chronic life are far more scary than anyone could possible imagine; unless you are here too.

Mindfulness. Distraction. Meditation and nature are the main tools I use to help control these fears. I hope they will be enough to see me through whatever comes along. That’s all I can do for now.

Gentle hugs,


Pain Management

Many of us who are chronically ill have encountered the words pain management in every single support group and in every doctors office for so long now. But what is it really?

When I first started needing pain relief and stronger meds I was scared. I worried that I would begin down a path where I would need more and more relief and stronger and stronger drugs, thus making myself more unable to think clearly and function. It’s a hard decision to make and so many of us struggle making these choices… but sometimes it gets made for us.

Unless someone has faced real keep-you-up-all-night pain, and then had to do that every day over and over than you can’t know how hard these choices are!

I still don’t know whether we manage our pain or we manage to endure it. I think that we try to achieve a little of both and in the best ways we know how.

Pain management for me means trying to use every tool and technique I can! I use heat therapy in the form of warm showers, heat packs, rubbing and massage. I use TENS machines on various muscle groups and joints. I try physical therapy in the form of stretching and range of motion exercises (assisted). And of course I use pain medications.

I try to do as much movement as my body will physically allow me on any given day. That’s been the management plan for the past ten years and it hasn’t changed much for me. I do it because I need to be doing something to help myself for my own reassurance.

Most people will never know this type of pain and have to endure it; it’s both a blessing and a curse. I only wish that those who have no real understanding would be less inclined to judge or offer advice.

This year I have added a lot more mindfulness and breathing techniques to my toolkit. I have also had to increase my current pain medication dosage… We do what we must!

Will this be enough? I honestly don’t know but it has made me embrace even more solitude and quiet times. I can understand why animals will withdraw and hide in places when the pain is too much. It is instinctive amongst all living organisms.

The one thing I have discovered in all of these years is that when people say “oh I suffer terrible pain levels too and I just keep working despite of them…” they clearly have no understanding of the type of pain levels faced by these diseases. None at all. These pain levels are not something you simply keep working through. They are pain levels that require medications, rest, emotional strength, stoic resolve and sometimes hospitalization!

In short these are not simple topics when it comes to chronic pain management, and each person deserves enormous respect for coping with what they have to. Hopefully one day something will come and help change the endless suffering for so many out there.

Gentle hugs,


Breeding Unhappiness

Much of what we know and understand about happiness, respect and self worth is taught to us as children. The foundations for happiness and contentment are taught to us at an early age and have long reaching effects into our futures. Long before even media, our peers and life takes over, our homes are where the basics are being set.

I realize this very clearly now.

My parents were responsible for showing me how to be happy and respectful and they were constantly showing me by their example. I am a product of what they taught and what I have learned for myself.

I can’t help but notice that many of the children born in the last several decades seem to have been raised with the expectation that happiness comes from gifts, holidays, the best schools, constant validation, money, constant attention, being given the rights and opportunity as adults yet little responsibilities and consequences to accompany them… in short, we are breeding away the ability to know real life skills and happiness by the way we are parenting and raising future generations.

What will happen when these children become adults and realize that life is very different and happiness as they knew it does not happen as they expected or were instructed?

Probably the best gift my own childhood gave me is that happiness was my own responsibility and the product of my own endeavors. Not given through money, indulgence, parental adoration or being treated as though I was the centre of their universe.

Arguably this made it harder to establish my own self worth, but perhaps this comes through our experiences and failures? From life lessons?

Many parents today wish to adore and shower their children with the possessions and opportunities that they themselves never had, but does this produce respectful, happy, resilient, dedicated and hard working adults? In short, are we breeding unhappiness and unrealistic expectations for our young people and our future leaders?

What happens when tragedy or difficulties occur? What happens when we don’t get what we want or when life goes very differently from what we were told?

Nobody expects to grow up and become ill or disabled! No one is taught how to create happiness from these situations! But life never goes as planned and many, many people are affected by sickness and disability. Many, many millions!

No matter how hard we work or how much we give out to others it doesn’t mean we are guaranteed a pain free or successful life… it also doesn’t mean that we are unworthy or lesser human beings. Perhaps this is worth teaching the young minds of today too?

Gentle hugs,