Airport Musings

I have always been a traveler. Partially because my Dad was a pilot, and flights were inexpensive in my youth. Mostly though, because I love to explore.

Before I got sick I had visited over half of the places on my “travel bucket list”. At 32 that was a pretty good feat. I’m not sure how many people that age could say the same. In fact, I was so grateful that I had, as traveling with chronic illness became less easy. Not so much the traveling with pain part (though it definitely factored in), but more because I couldn’t work anymore, so no money to explore the world.

These days most of my travel is around the country (New Zealand), to visit friends or take long weekend road trips. Once or twice a year I also go back home to Hawaii to visit the family remaining there. So while I don’t travel as much as I like, I still frequent airports.

Airports.

*sigh*

No one likes airports, let’s just say that right now. Crowded with people, long security lines, and overpriced mediocre food.

I dislike them even more now that I live with my disease. My pain isn’t usually visible, so I often don’t request wheelchairs when I really should. I push myself to walk the long halls to the gates, each step becoming more crippling, as I ignore the pain tweaks traveling up my spine. People scowl at me when I stop abruptly to stretch my sore limbs, not understanding why someone my age is clutching her back like that of an elder. They don’t understand the stress on my face when I finally get seated, muttering under my breath about the pain. But this has been my life for seven years now, and I’m used to treatment from others. My disease is invisible, and might as well not exist to those rushing past me to get to the gate, like a car speeding up to a red light.

Today I’ve luckily given myself ample time to get to my gate. I woke up with a terrible pain flare in my left knee/fibula. It has me walking with a limp, and I’m cursing myself for not bringing my cane, which sits uselessly in my closet at home. People have pushed past me in a hurry a couple times already, causing a few painful stumbles on my part. I see them now sitting at the same gate as I, annoyed at their rudeness.

*sigh*

In front of me is a wall with “Baggage Claim” posted on a sign with an arrow pointing westward. Amused, I wonder if that’s where I can find my illness insecurities. Perhaps they are making their rounds on the conveyor belt. Perhaps someone else will pick them up by mistake, maybe even take them home so I will be rid of them at last. How fortunate I would be.

I watch a hysterical child run around the gate like she’s been given candy to keep her quiet and it’s backfired. Her parents look tired and uninterested in her antics. As she repeatedly jumps up and down on the bag weigh machine, I pray it stops working so the anxiety of my bag being too heavy is alleviated, despite my knowledge of it being under already.

Airport anxiety + chronic illness = more pain. Hopefully it will cause me to pass out on the plane.

Advertisements

Why is support such a hard word to comprehend?

I’ve been thinking a lot about support recently.

We, the chronically ill, think about it all the time to be honest. We lay in our beds, or sit uncomfortably in our chairs, just wondering when we will have enough.

The ladies in my support groups get it. We can talk all day about the lack of support we get from our own doctors, friends, family members, even spouses. Some of us have been sick for many years, and yet we always are surprised by the painful sting of the lack of understanding around us.

And it’s not like our disease is uncommon. You can find a wealth of information online regarding the disease and its symptoms. Rheumatoid Disease is unfortunately common, I know at least four other people with varying stages of it. So, I find it fairly ridiculous when I’m faced with comments from people I know, saying “Oh I don’t really know much.” Yet, these are the same people that feel the need to lecture me on how I could be cured if I started yoga and went gluten free. *insert eye roll here*

Just for the record (in case you’re a new reader), I have tried so many diets, workout routines, and herbal treatments. I’ve tried acupuncture, CBD oil, vitamins, spiritual healing, magic moon rocks, I mean I could go on for ages…

When you are as sick as I am, trust me when I say this, you will do anything and try anything. I never asked to be sick, this wasn’t in my life plan. Do you think when I was young I dreamed about one day being 37 and unemployed? Do you think I imagined dealing with pain day to day that was so bad that most medications in the world don’t work for me? Do you think I hoped to have such a debilitating disease that it scared away most men in my life, leaving me often single and lonely?

No. The answer is no.

I have tried everything in my power to find something, anything, that would work. So, once again I am here pleading with people to not be bad friends to your sick friends. They don’t need your judgement. You will not and cannot ever understand what they go through day to day, unless you’ve experienced it yourself.

The best support is just being there. You promise to show up, then show up. If you promise to listen, then listen. Be supportive by understanding that what we are going through is something difficult for us. That we didn’t ask for this life, but that we struggle through it every day. And we want to be better.

A women in one of my support groups is realising that her husband is not the man she thought. He is very unsupportive of her struggle, and instead of trying to uunderstand, he checks out. This is not the support we want or need. Spouses and family members may have it the hardest, it’s true. They see us at our most vulnerable, at our weakest moments. The best way to support us through that is to just BE THERE. Don’t make it about yourself, your needs, why it affects you. We know it affects you. But we need you to be strong for us because sometimes we can’t be strong for ourselves.

This last month was a hard one for me. I was in the hospital for pneumonia, an ailment which I’m still recovering from. During the worst of it I cracked My ribs on both sides from all the coughing. It has been a hard month of pain on my body, and a very slow road to wellness.

Because of the multiple hospital stays I’ve had within the last six month, my mother and I decided to move in together. It seemed the best way to give support to each other. We move this weekend.

Now obviously I don’t have to tell you how painful it is to move with broken ribs. Packing has been a nightmare. The last two times I’ve moved I was in a romantic relationship. Now that I am single again I am reminded how hard it is to do things like this without the support of a partner.

So, I took to Facebook and asked if any friends could help me with the move.

I was shocked at the lack of response. During the best times I’ve always had close friends offer help if I need it. But when I call in that offer? Crickets…..

At the same time, a friend who I don’t know very well, stepped up. Not only offering her help, but also that of her partner. It’s times like these when I feel my faith in humanity gets restored bit by bit.

But I’m still disappointed.

I am a giver. I will give and give until I have nothing, if only to ensure the comfort and well being of others. I know this about myself and I know it has been overly taxing on me before. Especially in the midst of me living day to day with the illness that consumes me. But I will always offer help, and give whatever I can. That’s how I was raised.

It’s taken me many years to realise that not everyone is the same. Some people take. Some people are only present when it suits their needs. Some people are flaky. And honestly, some people just don’t care. And it can take you a while to really figure that out for yourself. I’m 37 years old and I still hold on to the hope that everyone cares the same degree that I do.

I’m an optimist, what can I say?

I guess the point to my litany is to be self aware. Be supportive to those who need it. Be a good friend, spouse, family member. Give what you can, not just take. Try to understand what it’s like to walk in the shoes of others. Listen. Care. Be.

Protect Life

There have been many moments across these years of sickness that I have wanted to give up.

They hit me especially hard when I am in hospital and feeling at a loss. There in the dark of night, bound by my illness to a hospital bed, the thoughts creep in. They ask if I’ve had enough. They wonder why I haven’t given up yet. They remind me how very tired I am.

I have looked back at the darkness countless times and felt so alone. It’s true, I tell the dark, I am so tired.

But I always find my way to the next morning and continue living with the illness, living with this disease.

Last week, I had one of those moments. Laying in a dark hospital room, tears streaming down my face as I looked into the darkness, asking why I had to go through such pain. But yet again, I saw myself through the dark and woke the next day, still sick, but determined to live through it.

I often get asked how I get through my life without being depressed, people confused by my cheery disposition. Please don’t make me out to be a hero. You have not seen me at my darkest moments when I have had enough. You haven’t heard my conversations with the dark when it pleads with me to let go. You don’t know what I go through on the inside so that you may see what you see on the outside.

I have moments where the cool and quiet dark looks so very tempting. A place void of pain.

But every single time I see what my life could look like one day when the light shines in. Maybe one day I will no longer know this pain. Maybe one day I can live a life I’ve dreamed of.

That is enough of a reason to protect life, even when your own body is out to destroy itself.

I protect my life to see my dreams one day come true.

A chance meeting

Today I went on what I perceived to be a new adventure. A music festival, that my now ex invited me to, those many months ago when we were still happy.

Despite our breakup I thought it prudent to still attend. I love music and freedoms, everything this festival was about.

But I didn’t expect to find what I did.

I thought I’d find myself again, something that in recent months I felt I’d lost. I give so much of myself in relationships. I give everything. And it’s not always reciprocated. In polyamory, it’s very often not reciprocated. But that’s who I am, and I refuse to stray from my truth. I will give until nothing is left, and I am often left alone when someone moves on to another they can receive more from.

I live with a chronic illness that many will never understand. It consumes me daily, and yet I am always optimistic that I have something extraordinary waiting for me out there. That maybe I was given this disease to prove how much I can handle, and maybe one day I will be given something lovely in return.

Tonight I felt sad. Overwhelming sadness that came out of the depths of my being and brought me to a stand still. So much so that in the middle of a festival I had to sit down and feel it moving through me.

And during this sadness, someone found me on that bench. I don’t know who he was. Maybe an empath, maybe a psychic, or maybe someone who just understood deeply my pain. He touched my hand and asked if I was ok. I said “sure”, not wanting to ruin anyone else’s mood.

But this man looked at me, and when he did it was like he looked inside my soul. He saw everything that was me and understood.

And he said, “I see your pain. And not the physical, though I know that also hurts you.”

I was confused, and thought he might be high or drunk.

He said, “You’ve met him, you knew him well, and he could have been your love. But he chose another, and thats on him, not you. You are exceptional.”

And with that, he got up and walked away.

I will never forget those words for as long as I live. This man who didn’t know me, saw inside my soul, inside the world.

He saw my sadness at the loss of love in my life, and though it wasn’t great news, it calmed me in a way I can’t explain. He took away my sadness. He took away my pains. And when I feel pain at the loss of love again, I will remember that I had it once.

I’ve lived a life worth living and loving.

I still don’t understand

I grew up with Disney, and fairytales, and romance. I grew up believing one day my prince would come and sweep me off my feet and save the day.

In my twenties I quickly learned how silly these concepts were. That Disney wasn’t real, that fairytales were rare, and that there was no prince waiting on a white horse.

In my early thirties, I woke up one day with Severe Rheumatoid Arthritis. In the six years that have passed since then I’ve learned that my body wasn’t made for romance, fairytales, and dreams come true.

I don’t know what the meaning of life is, or why we are here, and what we as humans are meant to do. But I’ve come to realize that I my body and mind were meant to endure colossal amounts of pain.

Pain from the diseases in my body that won’t quit multiplying. Pain from cancers that won’t give up. Pain from being destroyed from inside out. And the pain from being constantly let down by those who don’t stay.

If my body was meant to endure such stress and pain, why give me a heart and mind that is so vulnerable to the human condition?

Why let me know sadness and sorrow, heartache and loss? Was the physical endurance not enough for one person to take? Must I feel the destruction of everything inside on such a monumental level?

I don’t understand why I was made to experience so much pain. I don’t understand. I don’t understand.

No one can do what I do

Today I was on a video chat with my dad and he said something that has really stayed with me.
We were talking about my disease, “the gift that keeps on giving”, and how despite the odds I’m always optimistic.

Yesterday I got out of the hospital again. It was my second hospital stay in two months, not a great average for someone like me.
In September I was in the hospital for six days, with an esophagus complication that was never really resolved. In those six days I developed a cold that I still have, and blood clots in my arm from a perforated vein via IV insertion.
The cold is annoying yes, but the blood clots ended up being a real shit. I had plans to go to a friends wedding in California, just a few weeks later, which ended up not happening.
My dad has planned to pay for my tickets but the clots caused him unease and he reneged on our deal. (I later found out I couldn’t have gone anyways due to not being able to fly with clots in my arm.) Unseen problems that turned into a big mess. Fairly sure I lost a friend or two over it. The ongoing cost of a disease I didn’t ask for.

Early Monday morning I woke up with a sharp pain in my right thigh. It was a confusing place for pain in my body to be, as it wasn’t near a joint. Rheumatoid Arthritis attacks the flesh around your joints, but this felt like someone was slowly sawing off my thigh bone.
When the pain became unbearable I took myself back to the Emergency Department. This time, unbeknownst to me, I had a clot in my leg. A very large one, deep in my thigh, known as Deep Vein Thrombosis (DVT). This was a serious matter as if the clot broke it could travel to my lungs or brain and I could die instantly.
After many tests and overnight observation, it was concluded that I must take twelve days of self injections in the belly (ouch!), followed by three months of blood thinners. No flying for me anytime soon..

Now out of the hospital, and limping around on a cane, I’m packing up my room to move this weekend. An unfortunate overlap in my current reality. I took a break and called my Dad on What’s App to check in and update him on my status.
After I told him about my hospital stay, the medication options available, and my recovery time, he looked stricken. I told him not to worry, I’d dealt with bad before, I could do it again.
He said “You’re right. No one else could do what you do.”

Huh..

That statement has really stayed with me.
“No one else could do what you do.”

It reminds me of a conversation I had with my partner the other day about ‘reality’. (We’d been watching American Gods, a show about the unknown of our world, and the idea of creating your own reality, your own fate.) I asked him if that were true, then why would I create a reality in which I was always in pain? Seemed a bit strange for someone to want to go through that on purpose.
It was an odd show to be honest….

That conversation stays with me too. Coupled with the notion of “no one could do that but you”, I’m left wondering.

People have told me before that they didn’t know how I could get through the things I have. Didn’t know how I coped with the pain, the depression, the unknown fate of someone with an incurable disease.
And I think about it too.
I think about it a lot.

When I was a kid I was such a wimp. Paper cuts would end in tears, a scraped knee would be the end of the world. I couldn’t lift weights like others in high school during PE. I wasn’t a very physical person at all.

Now it’s been almost six years that I have lived through pain that most couldn’t conceive. Bearable pain that I live with daily would send most people to the Emergency Department. I live with things that I never imagined I would have to. I’ve been in hospital more times than I can count. I’ve experienced heart attacks, survived lymphoma, survived cervical cancer, and broken several bones from hugs.
I live with Rheumatoid Disease, Osteoporosis, Fibromyalgia, Lung Disease, and Lupus, daily.

“No one else could do what you do.”

Maybe he is right. Maybe they all are.
I may not have been ‘born for this’, but I live with it on a level that many could never conceive.
Because they will never see it on my face. I wear my Disease like a smile on my face. I stay optimistic, I stay positive. Because I have to.

No one else can do what I do.

little by little

I was looking through #quotestoliveby on Instagram tonight and came across three small words.

“little by little”

I’m sure that this is probably a mantra for many, as it could encompass so many aspects of life. It might have been written to encourage people to strive for their goals, to not give up. Maybe to save their pennies, and go for that dream vacation. Or keep chipping away at their education, until they’ve succeeded in their dreams.

I used to love seeing quotes like this. I’d save them to my quotes board on Pinterest. I even contemplated getting some of them as tattoos, so powerful a message they were, I wanted them as a permanent reminder.

But tonight I see these words and they don’t speak to me as they once might have. I see “little by little” as a reminder of my mortality. I see it as my disease chipping away slowly at my body from the inside out.

Little by little my bones grow brittle and break more often.

Little by little my fatigue consumes me to where I wonder if I can get out of bed again.

Little by little my hair falls to the floor.

Little by little the drugs fail and I wonder what will be next if I’ve already tried everything.

A lot of people have commented on how strong I am about my disease, how in control I seem, how optimistic. They don’t realise that this is the mask I must wear, my uniform. Because if I share how scary it is to not know when the end is, then I’m being “dramatic” or “looking for attention”. No one wants to hear when the chronically ill are suffering. It’s a nuisance, something that should be kept to themselves. So we do. We keep it in. We become experts at the “I’m ok”.

But there are days like today, moments where the gravity of everything collapses our resolve. It might be a song on the radio, or a comment someone made at dinner, or that moment when we look in the mirror while washing our hands. Everything we hide from everyone, including ourselves, shatters. We remember what we are going through and how bad it is.

So tonight, when I read those three words, I remembered that little by little my body is dying. And that just sucks.