Buzz for Bravehearts
I pledged to grow a deadlocked testament to silent suffering, and then shave it off for charity and awareness.
To represent people who, on the inside carried unseen pain, whether from trauma or from illness.
To give a voice to those who suffer silently.
I did just that, but when my dreads were only half matured I was bedridden with a spinal injury.
They became dishevelled and unruly.
A true representation of my own condition, as well as my mission.
Through the course of many months my condition was investigated, I hit many dead ends and road blocks, but it was finally discovered that I had a hole in my dura (the sack that holds the fluid around the brain and spinal fluid.
Along the way it was also discovered that my incredible debilitating daily body pain was caused by the same root problem.
Faulty connective tissue!
Ehlers-Danlos syndrome
I have all my life experience muscular skeletal pain. I thought having pain somewhere in the body all the time was normal.
Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.
Running a three hundred kilometre event such as the one I did last year, is not recommended.
While many people experienced injuries, mine have proven to be longer lasting.
There are many different types of EDS and also other related connective tissue disorders.
Connective tissue makes up 90% of the body.
Therefore it can cause a variety of problems. Individuals can experience different symptoms, and involve multiple systems.
Some forms of EDS are quite rare.
It is considered a rare disease, but in truth it is more accurate described as misdiagnosed, misunderstood and mismanaged.
In my country there is no specific specialist.
In the past months I have consulted general practitioners, neurologists, endocrinologists, rheumatologists, gastroenterologists, geneticists, pain specialists, physiotherapists, dietetics and rehabilitation specialists.
How lucky am I to have access to these people.
But I digress. Back to my Do.
My team hit their target
This year's Bravehearts777 runner and good friend of mine Belinda, did the honours.
Today the team will gather for the last time ahead of this year's Bravehearts777 marathon series.
7 marathons 7 consecutive days 7 states.
EDS info source ehlers-danlos.com
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I should have come on here more often the last few months. You are as always an inspiration and a strong kind woman. Love and hugs and look after that back.
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You are doing an amazing job. I hope you will feel much better soon. I know how hard it is when the body is not functioning the way it used too. I hope you will feel better soon.
The pure beauty of all of this is the compassion and kindness that just shines out of you. What a great cause and a powerful way to show you care. I'm sure that will be a great conversation starter and don't worry you are putting Demi Moore to shame. Still lovely.
You are too kind. I have been out for one coffee and since my spinal repair (not counting hydrotherapy with grannies). On my way to the fundraiser now, feeling like I need a Nana nap.
What a very touching and inspiring story. Loved the video. I have MS so know what it's like to be in constant pain.
Great cause too.
Upvoted and followed
I participated in the MS megaswim a couple of years ago. I was in a Relay Team that swam for 24 hrs at Sydney Olympic Park aquatic Centre. It's a tough condition, but seems to create warriors too. I think that one event raised a quarter of a million dollars, for people living with MS. One of my goals for next year is to do it again.
Thanks for your message. Following.
Wow, that's fantastic!
Thank you for following @girlbeforemirror
Gentle hugs to you! Well done for staying strong. We need more optimism in our community to lead us to more answers and better recovery!
Wow you had a dig into some old posts. Thank you.
I can't believe it has been 7 months. I buzzed it off a few more times, I couldn't face that between stage. I am in it now actually. I have a few new nicknames from my teenager bear-hair, haircut, toilet brush (or in authentic Australian dunny brush)
It's about 3 inches and stands straight up . Because of my headaches I can't stand anything on my head for very long, so I am trying some different products, and resisting the urge to shave it all off again.
I appreciate you checking out my posts
Your gentle hugs tipped me off. EDS ZEBRA WORRIOR. SISTER. XX DROP ME YOUR POSTS ALWAYS PLEASE FOR UP VOTE AND RESTEEM. XXX
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