Don't cry over the past
It's gone
Don't stress about the future
It hasn't
Arrived yet
Live in the present
And make it
Beautiful
You are VERY
Special 💐🌺🥀🌹
Today is what we have.
💞🐶🐾
#Makeitcount #Bekind #BeBrave #loveyourself #Anxiety #Snoopy #Beauty #Lovenhugs #checkonyourneighbours #Kindness #Positivity #ChronicIllness #ChronicPain #RareDisease #zebrastong
As the sun gets ready to set here in Atlanta, I am so excited about tomorrow night! I am going to a concert with my little brother. We are going to see Tyler, the creator along with Jaden Smith and Goldlink, some of favorite artists in music. So as I prepare for tomorrow, I am preserving my energy. This will be my first time going to a concert with my brother and the first time going to a big event with massive people in a big arena as an EDSer. As much as I am excited... I'm SUPER nervous too. I called the arena to see if I needed to bring anything extra or how will I get along with my wheelchair. I learned a lot from the friendly customer service agent I spoke to. I learned that when I get to the gate I can ask for wheelchair assistance to and from our seats. I was able to map out our seats and know how to move about in the arena. I have all my essentials in my clear bag and my emergency meds for just in case. I'm ready to have some fun because I deserve it! Keep fighting!! #EhlersDanlosSyndrome #Anxiety #zebrastong #keepfighting #Concerts #WheelchairUsers #Restisnecessary #preservingenergy #ideservealifetoo
Saw this at my hospital #EDS #ChronicIllness #zebrastong
Have nearly killed myself in the process but vacuumed and mopped vigorously and bleached everything I could, rearranged things in kitchen, cleaned bathrooms, done some shopping and marinated meat for dinner. This is the first time in over a year, since my decompression and cranial cervical fusion surgery that I’ve been able to mop and vacuum let alone do other stuff on top of that. I refuse to let EDS take me down, I will probably be bedridden for the rest of the week, but at least I can feel I’ve accomplished something big for me today and can hold onto that. So difficult to mop floors when your head is fixed in one position...but I did it 💪🏼 Makes my heart happy that my family get to come home to a clean and shiny house that I have cleaned. Now to sit down with coffee and try put my dislocated shoulder back into place 😜 #lifewitheds #canliterallytastebleach #everyisclean
One of my biggest sadnesses in getting ill has been the process of grief that I’ve experienced in grieving who I was and what I can do. This last year has taken me to the darkest places, places I never thought I would go to, accepting a different way of life has been a hard pill to swallow. I wrote a poem about my feelings on this. I’m not a person who likes to share my emotions, it’s really hard for me to be so raw and vulnerable, but here it is. I hope it can help someone who is feeling like I have over this past year. Feel free to share it, if you want. Enjoy 💜 #zebrastong #ChiariMalformation #ehlersdanlosayndrome #cranialcervicalinstabilty #thrombocytopenia #NewBeginnings #MightyPoets #ehlersdanlosdyndrome #zebrastrong #ChiariMalformation
A new carved road
Standing in this desolate place,
A life once known,
Ended,
Not knowing where to turn my face.
Trying desperately to walk my usual path,
The road is closed,
I cannot move ahead,
Maybe it would just be easier if I were dead?
Forced to change direction,
Not of my own free will,
How does one carve a new life?
I don’t know how to feel.
Looking out into what seems to be so dark,
An area of loneliness and fear,
I’m screaming inside,
Can anyone hear?
Staring at the ground in front of me,
Hard and dry,
How do I penetrate it when all I want to do is die?
The faces of loved ones swim around my head,
The worry on their faces,
Every time my illnesses force me to my bed.
Laying there, my body burning with pain,
The feeling of failure,
I feel so ashamed.
The anger consumes me, burning inside,
I never wanted to drink from this bitter cup,
I’m clinging to my life,
I cannot give up.
Staring back into that desolate place,
I notice a crack in the ground,
I tentatively try to dig,
Is this new hope that I’ve found?
Day by day I scrape and dig,
A new way starts to form,
My old path getting further away,
But I still feel so torn.
Torn between what was and what is to come,
My body betraying me,
I’m trying hard not to become undone.
Chipping away at this path,
The ground seems looser than before,
I start to see a glimpse of new direction,
I’m dragging myself from the floor.
My plans and hopes of old,
They are dead and gone,
It’s the acceptance of change,
I’m holding on.
Carving a new way,
It fills me with fears,
Yet, I’m starting making headway,
I’m wiping away those tears.
Not knowing what’s ahead,
But, honestly did I know that before?
A new path untrodden,
New experiences in store.
How this new carved path will take shape,
I have no idea,
A life uncertain I cannot manoeuvre and steer,
Rolling with the punches,
More than most,
My vulnerability completely exposed.
Accepting my new journey was the biggest step,
Thwart with complication,
I’m walking forward,
Taking steps with trepidation.
I’m seeing a future,
I’m seeing a way,
Moving ahead one step at a time,
Though I’m walking blindly,
I will purpose not to look behind.
Laura Martin 31/1/19
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