Awareness

 

I #TiedOneOn is a campaign to bring awareness to a rare disease called Dysautonomia.  October is known for breast cancer month, but less known is that it's also Dysautonomia awareness month.  It means that we are trying to bring awareness to the medical field.  Yes, you read correctly, many doctors and nurses are not educated in diagnosing and treating the many forms of  Dysautonomia.  We need to change that.

Of course it's also important to bring awareness to the public as well, as it's called the "invisible disease".  People affected with Dysautonomia often look fine on the outside but are really ill on the inside.  To hear people say:  "but you look fine", is common.  For the person struggling it can be hurtful to hear, and it can feel like they are not being taken seriously.

So what is Dysautonomia? It is a dysfunction of the autonomic nervous system (ANS) in the body.  The ANS controls your heart rate, breathing, blood pressure, digestion, excretion, body temperature, and other involuntary bodily functions.  In other words; ANS controls everything we take for granted, everything within the body that should function without us thinking about it.  All its functions should be automatic, and it's nothing we can control. There lies the hardest part.

We want to be in control of our own body. When the ANS fails to function it differs from person to person which symptoms are most profound. It can range in severity from mild to fatal.

So yesterday I #TiedOneOn for my son Christopher, our friends Claire & Bella, myself and everyone else who is fighting any form of  Dysautonomia.

My son is proof to that there is hope.  After three years of being critically ill, he was able to fully recover due to excellent treatment, support and time.  He is a true miracle!

I believe there are more people who will recover sooner with awareness and education. This illness will take many different forms and is played out differently for every person. A few things are the same though: it is real, it is difficult, and it is a battle.  For some it will last a couple of years, and for others it can last a lifetime.

There needs to be more research done, and more awareness among the medical community.  That is what this month's campaign is about.  But the fight doesn't end with the last of October.  It is a fight 24/7, and you must fight for a better tomorrow!  Never ever give up fighting the battle!!

I'm trying my best in fighting this illness.  To try your best is all you can do.

Please join me!

www.dysautonomiafoundation.org

Without connection

I just spent a few days without cable tv, computer, cell phone or regular phone.  Wrong, I had them all within reach.  None of them working though.  The internet was down, there was no cell reception, and even our land line was dead,  All due to a brief local power outage the other day that managed to blow out our service.  Our service to connect with the outside world. I didn't mind being without internet.  It felt healthy to take a break from checking e-mails, Facebook, Instagram etc.  It felt strange at first I have to admit, to not reach for my phone every so often to check the status of the outside world.  I realized it was like breaking a bad habit.  It was really hard the first day, got a little easier the second, and by the third day I felt it was a relief.

I didn't check what was happening on Facebook or on any other social media, not only because I couldn't but by now I didn't have the need to reach for my phone throughout the day.  I used those moments in real life instead, and it was refreshing.  The family spent time talking, and enjoying each others company more.  I read and listen to music a lot.  Something I don't take enough time to do when I am able to be connected with the outside world, or lost in a tv show.  One day was spent hiking and swimming together with a friend.  I was IN the present, and it felt amazing.

There was one thing though that I did miss during those days.  The regular telephone service.  What if someone actually needed to reach me?  One of my sons was out-of-town, I have family abroad, and what if something would happen to them?  What if something happened in our house and I needed to call?  What if there was an emergency?  All my what if's were unfounded.  Nothing happened.  All my loved ones were safe after the few days of no connection.

Actually, one thing did happen.  I now choose to turn my gadgets off more often.  I don't need to be available 24/7 and I don't need to check in with other people constantly either.  I can live a life in the here and now instead.  Now it's up to me when I want to use the modern services that we do have.  It is always easier when you have a choice.  Now I choose to write to connect with the outside world, with You who are reading.  I still want to be a part of the modern world.

Only sometimes I now pretend that it is still the 80's.  All I have on those days is a land line to make and receive phone calls, and a pen and paper to write an actual letter.  A nostalgic thought more than a reality.  I do love the new technology after all, as long as it doesn't consume me.  From now on, I won't let it.  How about You?

The Old New Me

I was in a funk this morning.  Nothing felt right.

I am still experiencing jet lag and my sleep was restless, or was it because of the Super Moon and its pull?  I had a family issue to handle that was making my heart ache.  My own health issues were as present as ever.  I also longed for a loved one with every cell in my body.

After a workout that I thought would fix it all, I only felt like my body was made out of lead.  The list of my so-called burdens started to get longer in my head, but I cut myself off to continue to add more to my "pity list".

What do I really have to complain about?  Absolutely nothing was my conclusion.  My misery was pale compared to a lot of other people and their more serious problems.  With that answer I knew I needed to do something different from the day before.  Something that would make my heart sing.

I felt that my world was upside down, so I turned myself upside down into a handstand.  For many years that was something that I did on most days.  Gymnastic was a big part of my childhood, and it also brought me the most joy for many years.

I admit that I was a little rusty today after some thirty years since my last handstand.  My form could have been better, but my body had at least some muscle memory.  I could still do it.  I wasn't searching for perfection, I was after something more important.

Like my muscles remembered how to do a handstand, my heart remembered how it felt to be upside down.  My heart was beating with pure joy, and that was the important part.

Sometimes the smallest shift in behavior can have the biggest impact.  For the rest of the day my world turned around for the better just by being upside down for a while.  Why?  Because I did something that used to bring me joy, and I found out that it still does.  That joy spilled over to all other areas in my life.

So take five minutes and do something that used to bring you joy but that you have not done for a long time.  It can be singing, dancing, painting, meditating, or simply anything.  It doesn't matter what you do as long as your heart starts to soar.

You are worth those five minutes, and the after-effect will last a lot longer than those minutes.

By turning my body upside down today, my life fell in to place.  At least for now.  I might have to do another handstand tomorrow, who knows.  But I won't mind.

Falling in Love

I'm day by day falling in love with my home town again.  It's been a few years since I was able to appreciate the beauty that surrounds the city.  All the history that breathes from the architecture is part of my own history.  The water everywhere enlightens my soul.  My family and friends are all warming my heart. I feel the blood rushing when I step outside and I know that I've fallen again.  I've fallen in love with Stockholm once more.

Washing my worries away

 

Yesterday I had a lot on my mind, and I was worrying over a particular situation.  Intellectually I know that worrying doesn't solve anything, but sometimes I'm a real expert in doing it anyway. That said, one thing that takes all the worrying in the world away for me is to be  engulfed by water.  So that is what I made possible yesterday.

As soon as my body was embraced by the cool water, all the worries were literally washed away.  I was in the now, and my mind was clear.  With every stroke I emptied myself of all worrisome thoughts.  My heart opened up, and I felt free.  Free from unwanted thoughts and feelings.  I was free to breathe with ease again.  The water is my healing source for both mind, body and soul.  What is yours?