It is May and it is Ehlers-Danlos Syndromes month

It is May and it is Ehlers-Danlos Syndromes awareness month!

A10B020D-0F35-4A15-8364-C96EAFEF18EA.jpeg

Seems that growing awareness greatly pushes things forward in terms of medical conferences around the world, research and a new classification of the Ehlers-Danlos Syndromes. Not to mention an ultra generous donation of 1,000,000 by an anonymous donor! Our deepest gratitude and appreciation to them whoever they are!
https://www.ehlers-danlos.com/ehlers-danlos-society-receives-transformational-gift-accelerate-genomic-research-hypermobile-eds/

The Ehlers-Danlos Syndromes are a group of connective tissue disorders due to defective collagen. This causes hypermobility, flexible, fragile and permeable tissues and affects the whole body, from joints to muscles, to skin, to organs, to blood vessels. It is frequently followed by other comorbidities such as Postural Orthostatic Tachycardia, Dysautonomia and Mast Cell Activation Disorder.

One of the best places to find all the information you need about all the latest news about the research results so far and not only is the Ehlers-Danlos Society at: https://www.ehlers-danlos.com
Having said that I cannot leave out the Ehlers-Danlos UK at: https://www.ehlers-danlos.org nor the Hypermobility Syndromes Association at: http://hypermobility.org or the Dysautonomia International at: http://www.dysautonomiainternational.org since the latter comes almost piece and parcel with EDS.
Another useful link about the relation of Mast Cell Activation Disorder with EDS can be found here: https://www.ehlers-danlos.com/2017-eds-classification-non-experts/mast-cell-disorders-ehlers-danlos-syndrome-2/  as research is finding out an all the more tighter connection between the two disorders.
Finally an interesting connection is that of the common occurrence of Autistic spectrum traits in EDSrs, and here is an interesting read about it: https://www.ehlers-danlos.com/why-i-love-knowing-i-have-high-functioning-autism/

Now that you got your reading for the month, I hope you will get a better understanding about this complicated and multifaceted disorder, the details of which I could not even begin to describe in a short blog post, or even longer for that matter. 

My wish and dream is that more people whose voice is widely heard would advocate and spread awareness for the Ehlers-Danlos Syndromes. That includes anyone famous, acknowledged and respected for their expertise, well known for their humanitarian work and in general anyone who can make waves with their presence and actions.

You know who you are! 
Please join your voice with ours to make the invisible visible. To grow awareness for EDS, to promotes research, to find a cure!

 

 

 

 

Open heart

There are those moments when we are facing particularly critical or difficult times that something shifts inside us, something gives way and we become at some level united with the world around us. Our hearts wide open, fully receptive in our complete vulnerability. Some might call it an altered state of consciousness, others may call it brief glimpses of enlightenment. Whatever it is, it feels blissful, sweet and tender. It warms our heart and makes us feel fully connected with all that is.

08C4D85E-591B-4483-B4A7-6ED2BB5341A8.jpeg

One day before going in hospital for a critical  operation, scared out of my wits, we went to the restaurant with my late husband to have something to eat. We sat on the outdoor patio close to the pavement. As we were waiting to be served, this little Gypsy girl – not more than 8 or 9 years old- approached us. Her eyes had locked into mine from the moment I first saw her walking on the street. She walked straight to me, stopped for a brief moment - all the while looking at me straight in the eyes - saying nothing, then bend over and gave me a kiss and a little flower she was holding.

A cynic might have thought “Nice touch!”  for her begging technique. Certainly that was what the restaurant owner must have thought as he quickly chased her away. Yet for me at that very moment whether that kiss was real or fake, spontaneous or calculated didn’t matter in the least. The eye communication without uttering a word, our little intimate conversation between souls,  is what I chose to perceive it as. I didn’t care if she did it to gain some money. What counted for me at that moment was what I felt and that had been a brief, beautiful moment of openness and bliss.

A brief moment that filled my heart with warmth and peace, that stopped my mind in its tracks from all the gruesome thoughts, the fear, the sadness, the desperation. It felt like time stopped for a little while and the sun shone brighter and warmer. The gentle breeze felt like a tender caress on my body, the scents of Spring all around me emanated strong and sweet. I felt a blissful, warm buzz all over and inside the depths of my core.

Am not saying it is OK to fool ourselves, to live in illusion and delusion. All am saying is that there are certain moments and circumstances in life where we can take things either way. It is not the actual event that matters so much but the way we choose to perceive it. In times of extreme hardship or difficulty we are indeed exceptionally vulnerable. We are in so much need for comfort and relief that we may easily fall prey to predators out there.

Having said that we may still be able to enjoy the beauty of life and love and turn it to our advantage, to feed our souls and then gently let go. No expectations, no hopes, no judgment. Simply experience and enjoy, be fully in the moment. When engaged in the present moment and in experiencing yet observant mode, there is little space for lies and falsity. 

I knew the little girl was out for money, I knew her mother was probably lurking somewhere around. I also knew that our gaze did lock for a few brief moments in a soulful communication. That the innocent child inside her did feel it too. I did feel her brief hesitation before she kissed me,  one part of her which knew she was doing something wrong and her other part that was still innocent and pure, spontaneous and playful. Yet I chose to allow my heart to remain fully  open, to feel everything as deeply as could be, to bask in the comfort and relief of that blessed, heart warming moment. 

Such moments do not come by very often. We need the contrast of life and the threat of death to be at work for them to happen. It is then that time stops and the doors of the soul open. When we can experience the beauty of our world ever so intensely and feel soothingly enveloped in it while at the same time being in a blissful state of awe. It is a most delightful and sacred ‘high’. One that helps us feel connected, part of everything that exists. Feeling as being one with the world.

I came out of surgery having survived the risk of hemorrhage. The pain came a few hours later and it was excruciating. I felt drowsy and confused, bewildered and exhausted. The epidural pain relief didn’t work, the needle would slip out, the night shift anesthetist got fed up, they knocked me out with oral pain medications. The next week in hospital was a daze of pain, exhaustion and the will to heal and get out. I just wanted to get out and feel the sun on my skin, the fragrant Spring breeze in my hair. The reassurance of home, the familiar, the known, my family.

I remembered the little Gypsy girl, felt grateful and thrilled to be alive. The rehabilitation was tough, the pain lasted a long while, no pain killers. It was hard to walk, took it step by step a day at a time. At first indoors, then outside enjoying the sunshine and the flowers, the coolness of the shade of the trees, the freshness of the grass. My heart was wide open to the beauty all around me, to a soft spoken word, a gentle touch, a smile, a laughter, an arm to rest on, my dog’s wet nose. Life is good and what we make it to be.

 

"Beyond this point..."

It made me laugh when I first saw it yet simultaneously triggered some thoughts. Are we always aware of what our ‘Beyond this point’ is and what that means for us? Do we see it when we reach it or do we realize it only once we are in the water? What does it take for us to reach that point? What makes us realize we are there?

Resilience - Trait or learned behavior?

Many of us go through a lot in our lives and for some of us the hardships even begin in early childhood. Be that with the divorce or death of one of our parents, sexual or mental abuse, bullying, frequent and unpleasant changes of environment, alienation, sickness, anxiety or depression.

Journaling through difficult times

There is great value in putting our thoughts down on paper. It helps us express our feelings, thoughts, state of mind. Get clarity on things, think, ponder, brainstorm, find solutions. However we usually tend to do so more when distressed, when undergoing difficult times but reduce our entries when feeling well and happy. The result is we end up with a lot of written material about our dark times and very little if any about our good times. That means that when we open that journal it is but a collection of gloom and doom and little if anything to lighten up our spirit.

Jennifer Aniston’s home

12CB8AEB-1DE6-4357-810E-A7951E394FA7.jpeg

https://twitter.com/inner_dream/status/961260175049949184

Absolutely love the mood of this home and wanted to share it with you!

The blue walls feel softly enveloping, the dark floors feel soothing and grounding, the leather armchairs comforting. The contrasting light colored carpets give it a sense of lightness and cheerfulness. The gourmet dark turquoise accents satisfy the senses. 

Overall what I see on these pictures give me a sense of peace and tranquility, stability, groundedness and reassurance. The blues with the browns feel warm and inviting. A soothing feeling abounds in this environment. It is next to impossible not to feel relaxed and wind down in this space.

Wish, Hope and Try

These are the three words that you need to remove from your vocabulary!
Why? Because if you ‘wish’ or ‘hope’ for something it means that you are not certain that you will make it happen. If you say you will ‘try’  to do something it means that you are not 1000% committed and determined to do it. As Yoda says:

“Do or do not, there is no try”

Speaking of boundaries

There are times, or rather periods of time in our lives where lessons hit us left and right with dizzying speed! As if life, exasperated by our not ‘getting it’ is throwing at us a bunch of events, signs and symbols hoping it will eventually sink in…

When it doesn’t, we usually wake up one morning, feeling bad, stressed out of our minds or lingering in the depths of depression, wondering why we feel this way since we were ‘just fine’ the day before! We are shocked by our astonishing lack of self awareness and the mere realization causes us even more stress. “How on earth did I not see this coming?”

How to carve out Personal Space

Everywhere you look you see articles and books beginning with ‘How to’ do X, Y, Z thing, yet not everything can be turned into a recipe of success for everyone, especially for subjects related to the human psyche. Unlike food recipes or step-by-step guides on how to make or do something specific, things pertaining to anything to do with personality, personal preferences and feelings cannot be constricted to a ‘How To’ recipe.

The notion and concept of Space is already vague and abstract enough, defining just about anything that surrounds us. The idea of personal space can be even more complex and depends on the person’s perception, mental schema, values and beliefs together with their personal needs and goals.

Invisible physical disabilities talk

How do you find the strength to get yourself up and going when suffering from a chronic, rare or genetic disease/disorder that is little known or has no cure? One that causes pain, weakness, exhaustion, depression, dislocations, nausea, dizziness, migraines, to name but a few?

Tell me my future

I want to know

Knowing what the future will bring is a wish as ancient as mankind. From the ancient oracle of Delphi, to the astrologers of Babylon and Egypt to Seers all over the world to today’s psychics and fortune tellers, people’s need to consult them remains as strong as ever.

Design your New Year using the learning of the last one.

It is that time of year again where we are hoping for a better future, pondering on our new resolutions, plans and dreams. The thing is experience has shown that more often than not, New Year resolutions don’t work. Either we don’t follow up on them, commit strongly enough or get out of steam pretty quick. So what if instead of looking eagerly to what the new year will bring, we took a good look behind us at the year that is heading out the door?

Last minute Christmas Decorations

K38.jpg

Christmas is nearly there and I haven’t come round to doing any decoration yet. I know…

In case you haven’t either, I will share with you one of my favorite Interior Design blogs: Belgian Pearls. Greet Lefevre is sharing her Christmas decoration with us here  It is simple, elegant, beautiful and easy.

You can downgrade or upgrade as you wish, the whole point is to create beauty and surround yourself, your home, your guests, with what you truly love and makes your smile.

A little touch here, a little there, love is in the details. It doesn’t need to be perfect, please everyone or need a lot of effort. It does need to be soulful, mindful and make you feel joyful and happy!

Whether you have a family or are on your own, take a little time to create beauty and honor love. Relax on the couch, cuddle in your favorite blankie, drink that hot chocolate, savor those biscuits, enjoy your loved ones, have lots of laughs, have fun, open your heart, share the love!

Merry Christmas!

“Am not happy with my home and I don’t know why. Can you help?”

Martha had a nice looking home in a great neighborhood but wasn’t quite happy with the interior of her house. Even though she was living there for the last four years, she could still not feel ‘at home’ in it. The house was quite large,  bright and airy but still looked like a great looking ‘staged’ home, neutral and devoid of character and personality. As if it’s purpose was still to appeal to as many people as possible but not designed for anyone in particular.

Upper cabinet free kitchen design - Can you feel the freedom?

The picture is from the wonderful Henrybuilt kitchen collection, a company with many international awards based out of Seattle WA, with over 4,000 completed projects in every state of the US, Canada, Mexico and the Caribbean. You can learn all about it HERE

The 'One wall storage' system - as I call it - is a kitchen design where all or most of the worktop areas are upper-cabinet-free and all the storage cabinetry is usually placed either on one or two adjacent walls from top to bottom. The appliances are usually built in either in the counter-top in the case of the elements, or the wall unit in the case of the oven and fridge.

We are but little animals

What mean little animals we can be at times! Ego puffed feathers and all. Being dismissive, arrogant and disrespectful of one another. For what? Because of fear? Feeling threatened? Or simply to enjoy moments of ego boosting satisfaction of having put someone down and stepping on their necks verbally with a smile?

THE PSYCHOLOGY OF FENG SHUI

Adapted version from my upcoming book: Your Life & Space Redesigned

-  Noooo! For goodness’ sake, don’t put the fish tank in your evil 2 corner, and especially in         your bedroom!

-  Huh!? What are you talking about? I love my fish! I relax looking at them before I go to sleep!

-  Fine! Do as you wish, but you have been warned.

-  …

Funny as it may seem, this is what Feng Shui conversations may sound like sometimes and the reason why so many of us in the West have come to consider Feng Shui as an incomprehensible, exotic, superstitious nonsense. A series of do and don’t rules to be followed blindly no matter how strange or absurd they may sound to the recipient of advice.