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.

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.

Let’s talk about karma

I had an interesting revelation recently about karma. See, for the longest time I thought that karma wasn’t on my side because of the chronic illness I suffer from. I figured things surely weren’t going my way especially if I was in constant suffering from this terminal disease. I’d hear other people complaining about their lives and I admit that it really frustrated me. Not because they aren’t deserving of complaints, no judgments here, but because they sounded so minor in my mind to what I was feeling. And that’s of course wrong. I shouldn’t judge others lives as much as they shouldn’t judge mine. I wasn’t mad at them, I was mad at my disease. 

I guess for a long time I felt cheated by life. Cheated by the world, for having this incurable pain that I had no control over. But then I had this great epiphany a couple of weeks ago. It was just after receiving an amazing gift from a friend. I had unfortunately just cracked one of my teeth, while eating boneless chicken, no less. I was desolate because I knew I didn’t have enough money to go to the dentist, let alone go and get a root canal and a crown, which surely would’ve been the case. I was super depressed and had posted on Facebook how frustrated I was that I was too broke to go to a dentist. And amazingly an acquaintance of mine reached out through a personal message and offered to pay for a dental visit for me. 

I was floored. Having only one other time experienced such generosity, I was shocked. 

Despite my protests, my friend insisted I go to the dentist the next day, which I did. And very unhappily came to find that it was not one tooth, but two! Could the news be any worse? Yes. It would cost close to $4000 to fix my teeth. I was even more depressed by that point. So I told the dental assistant to call my friend, whom would be paying for the consultation, and he would give her a credit card over the phone. While she went off to collect her few hundred, I sat trying to comprehend how I could come up with all that money for a problem that was a pretty big issue. They were my front bottom teeth, and it wasn’t something I could ignore. Imagine my giant surprise when the dental assistant returned and told me my friend had not only paid for the consultation, but also for my two root canals AND crowns. Almost $4000 in dental surgery and reconstruction!

I was speechless. After agreeing to come back later that afternoon for the dental surgery, I contacted my friend, worried at how much money he had spent. But he was so nice! Told me he was glad to help me, having known how much I needed it. Not only did he know I would never be able to pay him back, he didn’t even ask for me to. I could not believe the generosity of someone I didn’t know that well.

That  night, as I rested at home with a swollen and numb jaw, I also remembered the generosity of another person. Someone who had read my blog and sought me out because of it. A very generous person who treated my mom and I to an amazing meal at their restaurant, just as a way to say “I care”. Two people who barely knew me, but understood my struggle, my pain, had reached out and given amazing support in ways I didn’t know could happen to people like me.

And of course I have received support in many other ways, from many other people as well. Friends who have bought me groceries when I’ve run out of food stamps, or couldnt get to the store. Friends who’ve paid my phone bill because all I could afford was rent. People who didn’t even know me and donated to my fund to help me have a home. Family members who have helped get me to the er and the doctors office. Family that took care of my cats when I was ill or away. As well as two military families that took me in after I couldn’t work anymore. And all of this done selflessly, with no expectation of payback, or strings.

I have been very very lucky.  I realize this now. All this time I thought I had bad karma because of my disease. That I was being punished for any wrong doings I’ve done in my life. No. How very wrong I was. My karma is outstanding. How else to explain why so many amazing  people do amazing things for me in my life? How else to explain what wonderful people I have around me, who dedicate themselves to supporting and loving me? If I were a bad person, people would not help me as they do. You don’t give your generosity to someone you think isn’t worthy of it. Not generosity like I’ve received. 

Silly me. Bad karma? No no no.

My karma is outstanding. What a wonderful thing to behold. And thank you to all of the people in my life who helped me realize this.

Good Morning Pain

Good morning Pain, Did you sleep well?

Yes? Well, not me. The humidity was a nightmare.  The sticky heat enveloped my body making it impossible to get comfortable enough to fall asleep. Waking up every hour covered in a slick film of sweat, finding no relief in the fan pointed towards you, or having every window in the apartment open. Feeling so hot from inside my body that it felt like I was choking on nothing.

Good morning Pain, Did you hurt in the night?

Yes? You made every single one of the joints inflame and seize up, didn’t you? Watched as the skin around the bones grew tight and shiny, almost like there’s not enough skin to cover the affected area. My left knee swollen and enlarged, squishy to the touch, you can feel where the infected water around the joints is camping out.

Good morning Pain, Would you like some coffee or tea to start your day?

Well, you’ll have to get it yourself. My hands won’t grip anything today. I have to use dictation just to write my blogs or send a simple good morning text to my mom. I’d love to be able to pull the Keurig down from on top of the fridge, but you’ve taken the strength from my hands. They shake as I pick up something as light as my medication bottle. I’d love a strong cup of Irish Tea, but to fill my hot water jug I need filtered water from the fridge, and I don’t have strength to open the door.

Good morning Pain, Would you like some breakfast?

Well, you’ll have to skip it again today. The cereal and milk are both in the fridge I can’t open. We have canned fruit in the pantry, but my hands are too weak to open the pop top. I guess I don’t need to eat this morning.

Good morning Pain, Would you like to take a shower and get dressed?

I’m sure it will take you no time at all, for me it’s a different story. I struggle with turning the nobs to hot and cold, it’s an old building and I suspect they are a bit rusty. I must slowly and carefully climb into the shower, bending my knees are difficult, and I don’t want to slip. After getting shampoo/conditioner/shower gel out of the bottles then it’s the next task of administering them. It’s hard to lather my hair up when my hands are flat, and my arms don’t want to raise above my torso. It takes time. Shower gel on a loofah is so much easier, at least I can use something else to lather. After 15-20 mins under the cool water (hot flashes mean only cool to cold showers are acceptable) I also clean and can attempt the worst part of my day, getting dressed.

I still don’t have clean clothes, Pain. I haven’t been able to do my laundry. No summer dresses to don easily. I don’t have to leave the house today, so maybe I can find something lightweight and comfortable. Underwear first. I sit on the bed, and then must painfully maneuver one leg into each hole. This requires some bending and stooping, and I’m quite exhausted after it. I really need low maintenance clothing today. Gaucho pants in the drawer catch my eye, perfect! Loose tank top and I’m ready for my day. Which thanks to you, Pain, will just be a series of events I try to live through without hurting.

Good morning Pain, Would you like to take a walk?

You know I hurt everywhere, but my Dr says exercise is important, I must remain  mobile. I can’t seem to get my shoes on today, my feet are too swollen to fit inside my specialty stretch Skechers that’s bought for this very reason. Touche, Pain. You’re trying to win. Don’t you see how you’ve thwarted every step I’ve taken since waking? Can you let me have just one thing to enjoy today?

Okay, it has started to rain, so I will wait on my walk. I will limp (my knees won’t bend) into my living room and bypass my seemingly useless kitchen, and deliberate on the couch on what to do today. Netflix it is. I look at my body and sigh. Everything is swollen thanks to you, Pain. I won’t have a very productive day because of you, Pain. But hopefully the swelling in my hands will go down so I can hold my colored pencils and do my artwork today. Hopefully you will let me have something to hold onto in my life, Pain.

Just let me have something.



If you would like to help, please visit my campaign page where I am still accepting donations to pay for my rent and medical bills:

Christine Lilley’s Life Fund


My Sympathies

I tend to find that a lot of people don’t really know what to say to me concerning my disease. I know they want to be supportive or encouraging, but often it comes out misconstrued, and sometimes condescending. I get it. It’s hard talking to the sick. I never know what to say when I come across others. You want to say “Get better soon”, but in many cases that isn’t going to happen as they have long term illnesses. You want to say “You’re looking great”, but it’s hard to get out when you’re looking at the pale and sickly version of their former selves. Even “I know you’ll get through this” can come out really thin, because you really have no idea if they will, and they don’t need a reminder of that.

I think some people definitely handle it better than others. Those that have been dealing with friends or family whom are ill will obviously have a better grip on it. They will be less likely to break the record of shoving their foot far into their mouths. At the end of the day, however, I’d much more prefer an honest comment than a forced lie. If I’m having a bad pain day, and I know I don’t look well, press do not attempt to cheer me up with a “Wow, you’re looking great”. Or even worse, a “You don’t even look sick”. While I’m sure your heart is in the right place, comments like these can be really difficult to hear when we are already feeling terrible, and know we look it too.

You know that old saying “If you can’t say something nice, don’t say anything at all”? Well, in the case of being chronically ill, that phrase is reversed. Please don’t force a good word. I would prefer silence rather than an uncomfortable compliment that I don’t feel fits me or the situation. And I sympathize with you, really I do. It must be incredibly awkward and difficult to make small talk with me when I’m feeling like crap. When you have to watch me cross a room at the pace of a snail, and lowering myself into a chair so slowly that you can hear each individual joint click. Yikes. That must be a nightmare.

I feel the worst for my mom. Parents should never have to watch their kids go through extreme pain, illness. When you retire, I imagine your ideas of the next few years are filled with trips to see exciting places, hobbies and crafts, in Hawaii there’s definitely trips to the beach, and other fun sun filled activities with very little stress and hardships. Those long hard days are behind you once you retire. Right?

This morning I read a great article on Rheumatoid Arthritis.net written through the perspective of a husband whose wife has had Rheumatoid Disease since she was two. He wrote how difficult it is for him to watch friends, family, and society treat his wife like she is broken, and even worse, that her disease is an inconvenience. My sympathies go out to that man, having to deal with the hardships that his wife’s disease brings daily. But he seemed to be handling it extraordinarily well. Patience. That’s key.

My mom has a lot of that. After a full life of working grueling 9 to 5’s, two huge international moves, raising a daughter basically on her own with very little financial help, attempts to date and have relationships, while also maintaining her own individuality, she has always been one of my role models. If I can have a life half as full as hers I’d consider it a life well lived.

But then I got sick. My life derailed, and so did hers.

Her friends, family, and relationships can hide their heads in the sand as long as they please, but at the end of the day… my mom knows we are in this together. And unlike other people in my life I know that I can count on her to help me get through this. We have had some really tough times. My disease is scary. I won’t lie, there have been several occasions where she has had to watch me sob helplessly when I haven’t been able to keep it together. She has stood by me when my medications take over my body and mind, and mean and grumpy things come out of my mouth. She understands when I say I’m in pain. All I have to do is say “Mom,I’m in pain”, and instantly she understands what I need, or don’t need. She can look at me and know exactly how exhausted I am, or if I need to eat something, or if I need a hug.

My sympathies go out to her, because just like that husband, my mom goes through my disease with me. It’s not the retired life she wanted. And sure, she could walk away at any moment and decide I’m on my own, just as others in my life have. But she hasn’t, and she won’t. Because we are in this together.

Every chemotherapy treatment where I’m lying in that cold hospital bed with an IV in my arm, she’s there. In the waiting room while I give blood for the six thousandth time, she’s there. Sitting bedside while I wake from surgeries, she’s there. Handing me a glass of water while I take handfuls of pills when I visit her, she’s there. Holding my hand in the doctors office as I receive more and more bad news, she’s there. And she doesn’t put a limit on her help. She goes to every appointment and treatment with no exceptions. She doesn’t care if anyone else is there, because she’s there for me. No restraints hold back her love for me. She stands up for me no matter what. That’s real family. 

And my sympathies go out to her. Because she does whatever it takes to be with me, to help me. Because we are in this together.

If you would like to help support me, and help me gain my financial independence back, please make a donation:

Christine Lilley’s Life Fund

Showing Love For All The Right Reasons

Today I received my fourth donation from an unknown person. I knew some friends and family would be willing to help me out, but I never thought strangers would reach out and help me.

While it may seem like it’s not that different than donating a few bucks at the grocery store checkout counter, or throwing a few coins in the Salvation Army Santa’s bucket, it is to me. Receiving $100 from someone who doesn’t know me, or my life, brings tears to my eyes.

The fact that they asked for nothing in return, no favor, no debt paid back, no strings, and just gave that money out of the goodness of their hearts… it’s beautiful. They didn’t tell me I had to “earn” their respect, their love, their support. They gave it freely, knowing they will likely never meet me, or even talk to me. They gave it to be supportive, because they saw someone who needed help.

And of course I’m not saying that any of the other people that have very generously donated asked for anything in return either. It makes me so happy to see that there are people out there that are so generous and supportive of me and my struggle. It makes me feel like they all are sharing the journey with me. And more importantly, that they want to.

I guess today I am just overwhelmed by the generosity of people. Of my friends who have graciously donated; of my mom’s friends who have reached out to help their friends daughter, some of them having never met me either; to my family members, near and far, some even on different continents; and to the strangers who gave so openly.

Thank you.

Thank you for showing your love for all the right reasons, and for never asking me to earn it from you.

For those who’d like to donate and haven’t yet:

Christine Lilley’s Life Fund