I Am Ariel

Today was the first day of spring break.

People are venturing to far off lands. I’m trying to venture out of bed. I have spent the last of my days in my princess bed feeling like there are a thousand peas.

It’s okay. You will be okay.

My mums words are a constant echo that this all comes with the territory.

I get bad days, weeks, just like the rest of us and that is okay.

The worst part of it all is how the world doesn’t stop turning when you can’t keep up.

You miss out on the big important parts of peoples lives. You miss out on the little things that are so often taken for granted.  They forget that all you want is to be apart of their world.

I am Ariel.

I want to be where the people are.

I long to know about their days. I yearn to know more then these four walls.

but we are conditioned to move as fast as possible; to keep a pace of a hare and not a tortoise. How can I expect people to take a seat next me? To let me in and not left chasing behind.

The endless solitude outweighs the physical burden.

I am Ariel, patiently  waiting to get back on my feet.

 

 

 

 

 

 

 

This Is Not A Public Service Announcment

Chronic illness is sleeping with a pharmacy worth of pills that you can pop if things go downhill.

Chronic illness is being stuck in bed for days on end.

Chronic illness is having your family rework their lives to make sure you are okay, constantly serving your needs.

Chronic illness is your mum driving all over town getting you food you think you can stomach.

Chronic illness is exhausting for everyone involved.

Chronic illness is isolating yourself so that others don’t worry.

Chronic illness is feeling isolated by your inactivity.

Chronic illness is watching the world pass by, feeling trapped by your own body.

Chronic illness isn’t glamourous. It isn’t a PSA. Chronic illness is gut wrenching  and hidden from the world.

Chronic illness is only making it a few steps past your bedroom door before collapsing from pain and frailty — trying to make it back to bed like a baby sea turtle rushes to the sea.

Tears streaming.

Chronic illness is knowing there is nothing anyone can do.

So you sit, you wait, and you contemplate everything.

Above all, it’s knowing that something good will come from this — The joy that is coming cannot compare to the pain in this moment.

 

 

Choosing To Sit Down

Since I got sick, getting me to function normally has been a priority. I have spent years trying to gain independence. I  have learnt to walk more then once and while my legs aren’t my best attribute they are ones I am very proud of. I am proud that each and everyday I stand up and put my best foot forward.

I’m 18 and I wish this wasn’t a choice I had to make.

I wish this didn’t feel like a failure. I now see that putting the amount of worth I did in my ability to walk, even one that is  based out of pride, is damaging to someone with lowering physical abilities. It feels as though everything I have always strived for I am loosing. So much of who I am was comprised of  the girl who learnt to walk so many times and despite everything stood back up.

I’m choosing to sit down.

I’m choosing to see that being able to do more with my life, a higher quality of life, outweighs the expectations I put on myself. I choose to get an AFO years ago for the same reason. I choose a handicap placard.

I know that if I want the chance to be independent, which I do, I need assistance. I know that going to University has been something people have believed is out of my capabilities but I got into every school I applied for. I am smart and capable. My body isn’t quite as capable. My body is atrophying, chronically fatigued, and unbalanced. Life has been doable with people to support me but getting around a campus on my own isn’t going to work unless I lessen the burden on my body.

I am really struggling with the stigma. I don’t want to be a girl in a wheelchair. I don’t want to be separated, and potentially isolated. I don’t see myself sitting, in my mind I am running free in fields of wildflowers. I guess my expectations for myself have never lowered and I haven’t yet decided if that is a good thing.

I know that so many people are disappointed that this is a choice I am making. I know those in my prior medical team would not be okay with this. This isn’t he first choice ive made that would make them feel that way.

I hate that I am seeing this as a negative,  but I don’t feel good about this. I don’t understand God’s plan right now and I’m trying to be okay with this confusion; That not understanding His plan is not the same as not knowing that there is a plan.

So I will start the process of getting fitted and working with Occupational Therapy.

Sometimes chronic illness isn’t a series of rosses sometimes its tearstained pillows and disappointment.

 

 

Cake Mix and Balloons

Today was World Rare Disease Day. The day dedicated to increasing awareness, and subsequently funding, for the varying rare diseases out there.

Talking about it with my friend I had mentioned baking a cake and getting a balloon to celebrate. A party of one.  There is a lot to be proud of.

She talked about how she was baking with a mutual friend of ours and that they would bring the party to me. Not reading much into it, I went on with my day until I got a text message from each of them.

Can we come to your house to bake a cake?

Yes.

When I was younger my parents worked tirelessly to make sure all of my needs were met. Isolation was something we needed to combat. My parents started hosting dinner parties for my friends and I, Interactive Food Night. This concept worked because we had control over the environment I was placed into and it was an activity we could all do, eat. On those nights we would try out hand at making something new; Fondue, ravioli, sushi we did it all.

when the girls showed up with eggs and cake mix in hand they had two balloons.

She had taken time out of her day to get me balloons. She had remembered me saying I wanted balloons but probably wouldn’t feel well enough to go and get them.

The day became so little about these diseases I fight each and every day and all about livng. Living life surrounded by good people. Now, our cake may not have been a masterpiece by any means but i think today painted a beautiful picture.

As chronic illness sufferers, relationships can be tough. It had to find people who are understanding to the fact that you have a different set of needs that often change in an instant. Find those who will show up at your door without hesitation because i promise they are out there. I promise they are more than worth the wait.

Today was a rose.