It was quiet when my eyes were closed. It was when I could be at peace despite my world falling to pieces. I could be in the middle of a crowded room, or in busy store, or even now, as I lay on this cold bed in the middle of the local emergency room… With my eyes closed, I could shut the ugliness of the world out, maybe even pretend I was well again.
Not even a week had passed of 2018, and here I was with an IV in my arm, my mom sleeping next to me in a cold hospital chair. As per usual, no one had any idea what was wrong with me. A fate I had grown accustomed to. Leaving five hours later with a prescription for painkillers I’d never fill, and a suggestion to “get some rest”.
My problem is I can never get enough rest. Not if I want to attempt to have a life by any standards. I can’t sleep my life away afterall.
So in that hospital bed I lay with my eyes closed, waiting for no news. And in that quietness I fell asleep, mulling over a dream. A dream I’ve had many times. One that I know now will unlikely come true. Not so much a dream, but more of a memory…
The last memory of my other life.
The life I had before this was all I knew.
A life that wasn’t filled with medications, cold hospital rooms, and the constant threat of more pain, more fatigue, and a new diagnosis every six months.
Furthermore, a life where I would find someone who loved me for me. Where they wouldn’t look at me and see broken. Where they would marry me no matter how many years we may have together. A life with choices, and maybe children.
It was a good dream. But eventually I woke up and opened my eyes… Back to the cold hospital bed, to the doctor telling me she could do no more. Back to my reality.
I slept for a long while that day, once I had climbed back into my own bed, and my mom departed for the long trip home. I was used to this aftermath of hospital visits. Used to the bed rest, dehydration, and exhaustion that inevitably followed. Used to the loneliness, the unbearable loneliness that came with my disease.
But this time something new followed, I was not so alone. He came with food, and hugs, and the support I needed to get through it without falling apart. And in the days that followed, I realised his love allowed me to mull over a new dream.
I’ve been doing a lot of inner reflection lately, and it seems to me that those of us living with chronic illness do a lot of destructive thinking. I don’t think it’s on purpose either. I’m not talking about the inevitable depression and grief that comes with living with chronic disease, that’s a whole other can of worms… I’m talking about the depression we let ourselves slip into.
Rheumatoid Disease is shitty enough on its own, without having added Osteoporosis, Lupus, and Lung Disease to the mix. While I have accepted each of these as they have come, and deal with my diagnosis the best way I know how (smiles and realistic expectations), I find myself under a rain cloud. But it’s a rain cloud of my own conjuring.
There is a point that I think we all go through where we have had enough. The pain has become too great, or we lose support, or medical help, or all of these things, and we start to feel like we want to give up. I’m not talking about ending our lives, but more of an acceptance of defeat. At one point in our illness we accept that it can’t or won’t get better. It seems easier to accept that our disease has won, not only by conquering our body, but also our will.
I realise that recently I have let myself get to this point. And I really do mean I let myself. At some point my loneliness joined forces with the disease destroying my body, and they decided to get married. And instead of dealing with my illness while trying to stay positive, I let myself slip into depression.
See, most people think we (the chronically ill) keep to ourselves because we want to be alone. When most of the time the reality is that we just don’t want to bring anyone down with us. We keep our feelings, pain, and sadness within, convincing ourselves that it’s better this way. In my case, I like to take it a step further by emotionally cutting myself off from others. I guess my logic is that I don’t want anyone feeling sorry for me, or treating me like I’m broken. But in doing that I end up putting up walls, especially around my heart.
I haven’t been in a romantic relationship in a long time. I’m talking years. Wanna know why?
I wouldn’t let myself.
In hindsight I now see that my logic was really flawed. Because in keeping people at arm’s length, I not only hurt myself, but others around me as well. I started to use my disease as an excuse to not live my life. Not in the giving up sense, but I did throw away opportunities to have meaningful relationships with some great people because I justified to myself that I was saving them from dealing with my health issues. In truth, I was just building my own personal purgatory.
It’s taken me a few years, but I’ve recently seen the light. Maybe not the light at the end of the tunnel, but at least a flashlight that will help me find my way. I realise now that letting people in is important. Sharing how I feel is important. It may not always get you the results you want, but it sure as hell is better than keeping it bottled up inside. I need to not let my disease define me as a person, and I have to remember thank don’t have to walk in this life alone.
No matter how many days I have left, mine is a life meant to be shared. I will climb out of the purgatory of my own making. I will remember I am strong, beautiful, and worthy of happiness.
About forty-five minutes ago I was standing in an aisle of Whole Foods trying to grasp why they stocked my Tazo Chai concentrate with the cereal. Twenty-five minutes ago when my productive day turned into something else.
It was as I was grabbing a carton from the lower shelf that an old, short Chinese woman came out of nowhere, pushing her cart with the ferocity of one of the four horsemen of the apocalypse. She drove her cart through the aisle not caring who or what was in her path, pushing aside a younger man who was presumably reading an ingredient list, before descending upon me. Apparently no one was allowed to be in her vicinity as she too reached for a carton of tea, and in doing so rammed the front right wheel of her grocery cart into my right foot. The same foot that my Podiatrist earlier this week told me I had a torn tendon in. Ow! And about 10 other swear words that I won’t repeat.
Enraged, I look at the woman incredulously, waiting for what I could only imagine would be a profuse apology. Unfortunately, I’d be waiting awhile. Despite my painful howls, and under the breath obscenities, the woman was oblivious to the damage she had caused. Another patron walked over and asked if I was alright and if I needed anything. I loudly exclaimed that an apology would be great while pointedly looking upon my grocery cart attacker, and still, nothing. I was shocked as I watched the woman put carton after carton into her cart, and when it was clear that she needed to grab more which was blocked by my apparently inconvenient placement she finally looked up at me and said, “Hey you move”.
Wow. Just wow.
Needless to say, I didn’t move. I, as well as the good Samaritan that took the time to help me, just stood in her way, staring her down. By this point, the other people the woman had pushed past had gathered a bit, all clearly wondering what her problem was. I’m sure some figured she was perhaps a tourist, who spoke little English, and clearly lacked manners. But I think most of us knew better. This was just one of those people, oblivious to those around them, in a big hurry for no good reason.
I cleared my throat, spoke clear and concise, and said “Excuse me, you just rammed your cart into my foot, which by the way is already hurt. See the bandage?”
The woman frowned at me, looked at my foot, took a hold of her cart, and started to walk away!
FLOORED! SHOCKED! HOW F***ING RUDE!
The good Samaritan, went to stop her by putting his hand on her cart and demanded she apologize to me. She looked at me with a smirk, pushed his hand off her cart, and took off down the aisle, presumably to meet back up with the other horsemen. Bitch. The four other people in the aisle and I just looked at each other. Wow.
I mean I’ve faced rude people before, but this seemed extreme. What is the big rush? Everyone is in such a hurry these days, and it appears like it’s getting worse. People speed in the streets, even if it’s just to get to the next traffic light. Customers drive their carts through stores like their on crack, just to rush home for what? What is so important that they give up safety, manners, and common decency? It’s sad, really.
Now after this unfortunate moment had ended, and I limped to the register to pay, I realized I had a real predicament. My already aching foot was now throbbing painfully. Geez, I hope she didn’t break it. And what a depressing thought it was that the bus stop now seemed so far away. Ugh.
And then I remembered it! Uber! My life saver! I pulled out my phone, went into the Uber app and requested a ride. 5 mins later I was in a nice guy’s Toyota Tacoma halfway home, already daydreaming about my foot bath and chocolate ice cream.
So despite my near brush with death, or maybe just amputation by crazy Chinese lady, my day was to be salvaged. Uber saved my day, for the low and affordable price of just $4.76.
It’s not genetic.
That’s what they tell me.
So this didn’t come from someone in the family. I can’t lay blame on an old relative that died years ago from an unknown anomaly that was probably arthritis.
So then where? I don’t understand how one morning when I was 27, I suddenly woke up with this debilitatin))g, chronic disease. I don’t understand how it gets worse with every passing day.
I don’t understand how some days I can wake up and look and feel normal, free. Where does the pain go on those days? Where does it hide? Is there a secret spot in my body where it lays dormant? And how do I banish it there forever?
Yesterday I was at a functioning 5/10. That’s what my life breaks down to these days, numbers and scales. How I’m feeling, how I’m functioning, one out of ten. However, lately it’s more like 15-20/10. My doctors say it’s can’t be like that. That the worst is always just 10. Well, no I’m sorry, that’s incorrect. Because what 10 was yesterday, is now only a 6 compared to today’s pain. It’s not accurate for me to call it 10. They don’t understand that yesterday’s 10, even last week’s 10, is not even close.
I’m just wish people could feel my pain, only for a moment, and understand what I’m dealing with. The excruciating pain in my knees as I try to climb out of bed… I never get used to how terribly bad it is. The involuntary yelp that escapes my mouth as the flesh around my knees and feet burn with pain. The quick second of relief I feel as I lean my head against the wall, a moment to rest before moving on.
I had a migraine early on last night. My head throbbed as I lay in my darkened bedroom with the fan on, willing it to dissipate. Luckily, I fell asleep just after 7, the migraine fading with the approach of zzzz’s. But then I woke up just after midnight with a new onslaught of pain.
I’ve been awake ever since. Every single joint on my body is inflamed, puffy, red. Every movement causes horrible pain. My bones feel broken. My muscles and flesh burn with searing pain. Everything hurts everywhere. Moving is brutal. I’ve been crying for hours. You say my pain must be 10/10, Doctor? Wrong. It’s 20/10. Deal with it. 10/10 would be a walk in the park. I’d love a 10/10 just this once!
I especially don’t understand how my doctor told me today that the next month is only going to get worse. You’re my Rheumatologist, please just this once, fix me. Give me something that will keep me from being bedridden. Do something for me, PLEASE. Stop this pain, I beg you. Fix me. Fix this. Make it go away. Make it tolerable.
I don’t want to be in pain anymore. Give it to someone else, I beg you.
Why me? Why?
My cats are meowing. I can’t see them because my eyes are still closed, but I can hear them. Please, please, please don’t be a bug. I open my eyes at the exact moment that my body registers the pain.
OMG. This is a 15/10 at least.
Damn, I need to pee. This is going to suck.
I push the bed covers off with the back of my hand. My fingers are swollen and stuck in the position of a claw. They look deformed and I shudder at the thought that those days are fast approaching. I push off the bed and cry out in pain as my knees scream. I hobble to the bathroom and take two deep breaths in before sitting on the toilet seat. My knees are purple and huge. It takes me ten minutes to psyche myself into standing up again. The tears fall as I hobble back to bed.
I’m going to take my morning meds now. Maybe they will kick in while I finish sleeping and I’ll wake feeling good. Maybe.
Aureus is on the bed next to my head, meowing. He wants his morning can of wet food I assume. I open my eyes and the pain is still there. Sorry Kitty, Mom isn’t getting up for that just yet.
I need to pee again. Damn it. Pain is still bad, maybe a 13/10. Why haven’t my morning meds kicked in yet?
I stumble to the bathroom, crying out in pain as I sit on the seat. This time though, I can’t get up. The pain is too strong. I sit there for several minutes, breathing in and out, in and out. I try to stand up and come crashing down.
I lean my forehead against the wall, taking deeper breaths, knowing I’m just going to have to get up, no matter how bad the pain is.
I stand. I scream.
God I hope my neighbors didn’t hear.
This time I hobble to the kitchen and plug the cats water fountain in. I fill their bowl with dry kitty food and hobble back to bed. I fall in, not bothering to cover myself and pass out in exhausted pain.
My body must know I can call my Rheumatologist now, his office opens at 8. I must see him today. Only he can tell me how to get through this pain.
The nurse on the phone tells me he has no availability to see me. I ask what to do and she says she doesn’t know.
Well, thanks, that’s very helpful. She says I can come next week. Well, gee, I hope I’m still alive next week. Because at this moment it feels like my body is shutting down.
I take another 2.5mg of Prednisone. I just need to be able to move. Please, please kick in soon.
I’m so thirsty. I hobble to the kitchen but I can’t open the fridge door. The magnet is too strong. Instead I attempt to open a bottle of water from on top my fridge instead. I can’t. I have no strength in my fingers. Shit.
I go for the fridge again. Screaming in pain and frustration I get it open. With two hands I pull the carton of milk out, praying it doesn’t slip between my grasp. I pour a glass of milk and get a straw to drink it with.
Finally. Thirst quenched.
God I’m hot. And itchy. I wonder if ill be able to wash my hair in the shower today. My hands still stuck like claws. It’s hard to squeeze the shampoo bottle on days like this.
I must have fallen asleep again. Why does everything hurt so much? I have to pee again. My knees are so mad at me.
My cats meow at me from the floor. I try to stand but fall back down on the toilet seat again.
I need help.
This is too much pain for me to handle.
I need help.
If you’d like to help me, please visit my campaign page at:
Christine Lilley’s Life Fund
When we were sick as children there was always that one person who could make us feel better. Or at least help us get through our qualms faster. It could have been a favorite aunt, a grandparent, or an older sibling, but for me as an only child, it was my mom. And when I was really sick (with a bad cold, or the flu, or maybe belly aches,) she became ‘Mommy’, and Mommy could do no wrong. She anticipated when I needed hot tea, another warm blanket, help to the bathroom, or sometimes just a hug and a channel change (our first cable box in the 80s didn’t have a remote). When we were young these relatives that helped us were more like superheroes, they could do no wrong, and they cured our ailments with a well timed cup of hot chocolate.
I miss those days. The days of waking up and only needing to holler down the hallway for help, and in flies Super Mom to the rescue. But those days are long gone.
I didn’t even have to open my eyes this morning to know it was a bad day. Every inch of my body was silently screaming. The trek to the bathroom was child’s play compared to the excruciating job of getting up off the toilet once finished. My knees said no. My hands and wrists said no. My arms and shoulders, feeling like broken bones flopping around inside my skin, said no. If only Mommy had been there to help. To soothe me with soft words and French toast.
Everything hurts. My hands are the size of baseballs, my fingers won’t bend. Crying does nothing to help soothe except bring my confused cats into the room with pleading meows to feed them more. Oh the joys of motherhood.
I want some hot tea. I want to watch Cartoon Express on USA. I want hot oatmeal and another blanket. But no one comes when I holler down these halls. The pain stays.
Gone are the days where our knights in shining armor are here to make us well. Gone are the days of walking into a kitchen to a ready made breakfast. Gone are the days that a hug makes all the difference.
Gone are the days of Mommy making it feel better. I hurt all over. And no one is here to fix me.
If you would like to help me, please visit my donation campaign at Christine Lilley’s Life Fund
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: