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.

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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.

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.

Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

A Letter To My Disease

Dear Rheumatoid Disease,

This letter has been a long time coming. I’ve wanted to write for so long, but there were things stopping me. It’s not just that I couldn’t find the right words, or that I was compiling my thoughts and that took time. If it was just that I could have written one letter, and then another, and then another, until everything that needed to be said was on paper. It’s that I’ve been so lost, I haven’t wanted to write at all. Not my blog, not my journal, in fact the only thing I have been doing is coloring. That didn’t need words, or emotions. I could sit there for hours with my books and pencils, watching the colors, deciding what they meant to me, what they represented on that paper, and in my life. Zoning out, hour after hour, day after day. Colors.

 

Sometimes though, the colors aren’t enough, and they can’t take the pain from my mind, they can’t save me from you. I often fantasize what I would say if you were standing right in front of me. If you could be a physical being, what I would say to make you listen. What I would do to you to make to feel what you have done to me. Would I hit you? Would I scream and shout? Or would I be vengeful? Would I do to you what you’ve done to me?

If you were a person for a day I’d make you be me. A taste of your own destruction. I’d make you feel the pain of getting up in the morning knowing that there is no cure for what you have done. Make you feel the humiliation of not being able to open a carton of milk, like you used to be able to do not three years ago. I wonder if you wanted me to feel small and insignificant on purpose, if that was part of your game. I’d make you then bathe, and cry out in pain and shame when you couldn’t squeeze the shampoo bottle, or lift your hands to your head to lather in the bar of soap you were forced to use instead. I wonder if you even care how hard you have made my once simple life. Would you understand my anger when you couldn’t get dressed without screaming, or pull items from the fridge to feed yourself? Or would you laugh at me, at yourself, because this was your design, and what you wanted. Would you smile at the people on the street that will never understand my pain, will you feel happy that your work was a success?

Some days I stand looking in the mirror, hoping to talk to you. Hoping to ask you why, why did you choose me? Was it my body, was it an experiment? Was my body more resilient than others, were you hoping to see something different in me? How did you come to this choice, this body, this severity? And how much longer are you staying? Months? Years? Are you planning to die with me? Or maybe when I go you just move to someone else, another body for you to destroy piece by piece.

 

I wonder…. If I begged, if I pleaded with you to stop… could you? Would you? If I cried for you, showed you how much I don’t want to die… Maybe then you would ease up?

 

No of course you wouldn’t. I see your smile every time one of my bones cracks. I see your joy in the swelling of my joints, and the discoloration of my skin. I feel your content when I can’t find clothes that fit due to my growing body, a side effect of a drug that barely touches you, but causes me great discomfort and shame. What will it take to bring your smugness down? What can I do to destroy you like you’ve destroyed me? Maybe the only way is when this ends, when I take you down kicking and screaming. When you’ve broken everything and all that’s left is the long sleep.

I always sit and wonder what to say to you. How to make you see how wrong you’ve been, how unfair. Why did you do this to me. What are your goals in all of this? If it’s to ruin me, you’re done, you can stop. My bones are brittle like English toffee, my blood poisoned with you, my body exhausted and worn. Every inch of my flesh is crying. Is that enough for you? Have you had enough yet? How much more can I give, how much more do you want?

 

I’m tired. Please, please, please let my body go. Find another. I wont be much entertainment soon. My body is falling apart. Find another. Please. Please. Please.

 

 

 

 

***If you would like to help me financially/medically please visit my page and make a donation: Christine Lilley’s Life Fund