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.
It recently occurred to me that a lot of my friends and family often belittle their own health issues in front of me out of guilt. I’ve done it in the past as well, so I recognize the action. You’re talking with someone who has a long term condition like diabetes or cancer, and maybe they experience constant migraines or something similar, and you start complaining about an awful headache you got the other day. Suddenly you clamp your hands over your mouth, mortified that you’re complaining about a headache to someone who not only experiences them all the time, but to an excruciating degree. It happens. We’ve all been there.
But only until I was the one in the chronic illness drivers seat did I realize that I shouldn’t have ever had to feel guilty for that headache, and neither should you. It’s not a competition, and I’m certainly not winning just because my illness is worse than yours.
Everyone who knows me, knows that I’m sick. And knows that I’ve been sick for quite a while now. I don’t hide my disease, nor my symptoms. Everyone knows that I suffer from chronic pain on a daily, if not hourly basis. Those closest to me know the severity of my disease and the toll it takes on my body. But just because I suffer, it doesn’t mean I think I’m the only one. I know there are hundreds of thousands of people out there that are sick, suffering, even dying. And you don’t have to be suffering or dying to want a little sympathy either.
Having a really bad cold, with stuffy sinuses and sneezing and coughing, sucks. Having a really bad headache sucks. Having a sore throat totally blows. Getting the flu is a nightmare. Cutting your hand or cardboard stings and is awful. I’ve had all these things happen to me and I know how shitty it can be. Life just hits us with a bus sometimes and it’s unavoidable.
So don’t feel like you have to hide your pains or illnesses from me because you think I get it worse. It’s not a competition on who feels more awful. Please don’t hide how you feel. Share your aches with me. Tell me about that awful paper cut. Let me support you, and make you a cup of tea for that terrible headache. We all get sick, and hurt, and feel crappy at times. You are not any less important because you don’t have a chronic illness and have 14 doctors on speed dial. A lot of you support me when I’m down and out, which is more often than not. Let me help you when you’re not feeling so hot either.
It’s not a competition. It’s just life.
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Today I was faced with a great realization of how many things in my life have changed that I may not have been aware of before. Little things that you would take for granted, that you wouldn’t even think of when you live a normal day to day life.
Sure I’ve been aware for some time that showering has become a real circus act. The different ways I’ve coaxed the shampoo and body wash out of their bottles should be immortalized on film. Washing my hair with my loofah, shaving my legs by holding my razor between my wrists, shivering through an air-dry, courtesy of my bedroom fan. The list goes on, and that’s just bathroom related!
My life has changed drastically in some areas. Although today I realized how much I miss being able to take a quick trip to the grocery store. Gosh, I miss those days where I could say “I’m popping out for milk”, and actually mean it. As in I leave and come back within a half hour hauling a carton of milk, and more often than not, a packet of Oreos. But the days of a ‘quick’ anything are gone. Now everything must be planned around my pain, fatigue, transportation etc.
Three years ago if I wanted to go to the grocery store I would have grabbed my purse and headed out the door. Back then I lived pretty close to where I am now, so it would have been a ten minute walk to the store. I’d have grabbed what I needed and either walked back home, or taken a taxi, depending on how much I had to carry. The whole ordeal would never have taken longer than 45 minutes to an hour.
And then there was today…
Around 12:30pm today I glanced at the clock and thought that maybe I should hit the grocery store, just as soon as I finished coloring the page I was working on.
At 1:12pm I opened my eyes to find I had dozed off at some point. Luckily this time I hadn’t accidentally drawn across the page since a pencil was still in my hand. I packed up my coloring things and went into my room to change out of my loose fitting lounge wear and into a pair of shorts. I sat on the bed and took my afternoon dose of medications, and then laid back on my pillow for a moment.
2:48pm was when I awoke the second time. Determined to not fall back asleep, I quickly got dressed, gathered my reusable grocery bags, brushed my teeth, and was out the door.
Gosh it was hot outside. The sun was really beaming down. My feet were slightly swollen but since the next bus down the street didn’t come for another 15 minutes I decided to walk it. After all, when was the last time I got my six thousand steps in? Not this week, that was for sure. I made it to my local shopping center in good time and the bus I could have taken rolled past as I entered the drugstore.
After waiting in a ten minute line to pick up my prescriptions, I perused the Red Box kiosk, got a free movie, and headed to the supermarket next door. God I love free Red Box!
Have you ever noticed that supermarkets don’t have anywhere to sit? With the exception of the Signature Cafe area at Safeway, chairs are scarce. I find that strange with so many senior citizens around. I’m sure they get tired and might like to rest a moment, I know I sure would. And by the time I’d reached the grocery store I had been on my feet for close to an hour and I was exhausted. A stool would have been so appreciated.
As I started to wander slowly down the aisles, my feet were indeed quite swollen now, I became so aware of my surroundings and the other shoppers, especially the elderly. While they used to bother me with their slowness in the past, I was now aware of their need to take their time. I needed it too. The more my sore and tired feet would ache, the slower I became, and the whole grocery shopping experience turned into this awful chore that I couldn’t wait to be done with. I used to love perusing the aisles, taking my time, looking at everything. Now I was all business. Except I couldn’t move quicker because everything hurt, and the freezing air they were pumping through the vents wasn’t making it any easier.
By the time I made it through the checkout and hobbled over to the bus stop to go home I was shocked at the time. It was 5:26pm! I’d left my house at 3! How could that much time have possibly passed? Had my movements really become that slow??
After waiting a few minutes I hopped on a bus and rode down 4 stops before ringing the bell and getting off at my street. Putting away my groceries was almost too much work. I was so tired. I could barely keep my eyes open. For once, it wasn’t pain that made me long for bed, but sheer and utter exhaustion. 6pm. Really? It takes three hours to pick up groceries? Ugh. Talk about feeling like an invalid.
What a great topic for a blog, I thought. So as soon as my groceries were put away I headed into my room, sat down on the bed and pulled out my tablet. I was able to turn it on and queue my website before fatigue gripped me and I passed out again.
7:15pm Is when I woke again and finished the account of my day. Man, this narcolepsy business is no joke.
8pm now and I’m hungry. I better make dinner and eat it before my next eyelid closure has me waking up on a different day…
The other day I read an interesting story on Arthritis.net about “faking symptoms”. Truth be told, at first I was a little annoyed that it sounded like someone was talking about exaggerating their symptoms because I feel like I face the stigma of that every day. People that I come into contact with are constantly second guessing what I tell them, not understanding the severity of my disease because of how I look on the outside. The constant annoyance of having an ‘invisible illness’, it’s exhausting. Everyday, even if I’m having a terrible, terrible pain flare, I look completely normal (besides the obvious Prednisone weight gain that is). The only way you could truly see if I was very ill is if I show you the pain on my face, or if I’m limping, or if you caught me during a bout of nausea.
Back to the online article.
So as I started to read this article on ‘faking it’s I realised my initial thoughts on it were wrong. The woman writing the story was indeed talking about something I find myself doing all the time, faking symptoms to make people thing I’m better than I am. I guess it stems from my pride, from not wanting to appear weak, or vulnerable, or small. But the woman was right, I do in fact fake it with family and friends all the time, just not in the way they’d think.
A good example of this is just the day before yesterday, Thanksgiving Day. I woke up that morning around 5am already crying. My pillow was wet with tears, and the second I tried to move I knew why. I was having an excruciating flare. I couldn’t even keep from crying out as I moved from my bed to the bathroom. Every step felt like my feet had been bashed in by a sledge hammer, Kathy Bates of Misery style. My shoulders felt dislocated, my hands crushed into a thousand pieces, my rib cage heavy and pained, as if the very bones were a cage for 50lbs weights that were tossed around as I attempted to move. I worried about how I was going to accomplish helping my sisters cook the big thanksgiving feast.
That’s when the faking it started. I cried while making myself a pot of tea, everything taking longer as it was agony to move at all. Then it occurred to me to make breakfast for my family since we had to get up so early. And sure, it took me quite a while to accomplish it as the pain was brutal, but an hour later Apple Croissants were packaged into Tupperware to take to my dad’s house. The mere act of that alone was agonisingly painful, and I’m not sure why I even put my body through it. The ordeal of trying to open the crescent roll tube was a sobbing matter. So why? Why didn’t I just stay in bed for an extra hour and rest and not aggravate my pained body?
Pride. I didn’t want to be seen as vulnerable or weak or pathetic. I wanted to be seen as strong and capable, someone who can overcome the odds of a severe and debilitating disease, someone who was winning.
Later at my family’s house I continued to push myself despite the pain. Swearing I could do the work even though every step, every movement, was agony. They asked how I was and I’d shrug it off with comments like “I’m fine” or “Don’t worry, I can push through”.
I took a nap in the early afternoon to regain composure for the coming evening celebration. As soon as the door was closed and locked I could be the real me again. Wipe the plastic smile from my face, let the exhaustion and pain show. I lay on the bed and slowly registered every pain, every feeling of brokenness, and continued to do so until the exhaustion took over and I passed out. But not even two hours of rest can expel the pain. Eventually I had to rise again, shower, change, and paint my face with a look that I hoped would convey “Everything is fine”.
It was only much much later, when I was home again and in bed, staring at the ceiling as silent tears slid down the curve of my cheeks, did I wonder why on earth I had put myself through that.
I’m not helping anyone, including myself, when I “fake it”. If anything, I am the cause of people thinking I’m faking it for real all those other times. My pride is damaging my credibility as a person with a severe illness. If people always see me smiling and saying everything is fine, well of course they will be suspicious of any real pain I experience. They won’t understand why I’m fine one minute and in pain the next. Because I’m showing them that it’s painful sometimes and other times it not. But that’s a lie. It’s always pain. I’m always in agony. I always hurt.
If I saw someone walking normally one day, and the very next I saw them limping and asked ‘hey what happened?’ and they told me that in fact both days they were in pain, but they were only showing the limp today, well I’d assume something fishy was going on. And that’s basically what I’ve been doing.
In my pride, I’ve not wanted people to see how truly sick I am. Last night as my mom and I discussed it, I came to the root of my problem. Yes, it does have to do with pride, and not wanting to constantly be seen as ‘sick’, but it’s also something else entirely. Something I hadn’t realized before, but was so painfully obvious.
I don’t want to be seen as the ‘sick person’ not just because it makes me weak, but also because it excludes me. Being labeled as ill automatically puts me into this group where I don’t get included anymore. Don’t fight me on this, because it’s totally true. I’ve received less invitations for group activities like beach days, bbqs, dinner parties etc. I rarely get asked out on dates anymore, which was never a problem in the past. I’m not the friend that people automatically turn to for a fun addition to an activity. And that always used to be me.
Once I realised this phenomena was taking place, I think that’s when my bout of ‘faking it’ really came to life. It was to counteract boredom. If I showed everyone I was better than I was then I would be included again. Sure enough, I was part of the laughs and stories and jokes in the kitchen on Thanksgiving. I’d been invited recently to more group social activities. I’ve even had a date recently. All because I tucked away my illness for no one to see. In a sense I hid the present me to bring back past me for everyone’s enjoyment. Everyone’s enjoyment but my own that is. Because it is exhausting hiding my pain. It’s painful hiding pain. What the hell Christine? What are you doing?
So now that I have come to terms with the stupidity of my actions… I’m stopping them. It’s time to just be me, pain and suffering and all. And if it’s confusing suddenly seeing me in a bad state all the time you can just tell yourself I was like this all along, that I hid it for your comfort but that those days have ended. I only work for myself now.
My exhaustion, my pain, my agony, will show on my face as I live it. As I experience it, so shall everyone experience me. The days of faking it have ended. I am thankful to that woman who wrote the article and brought my silly actions to light. The case of the Fake Christine has ended. Now what you see is what you get. Sorry if that’s depressing or hard to handle, but feel better in knowing it’s far less than what I deal with every minute of every day.
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Has anyone seen that movie Rat Race? It was one of those awful comedy attempts of the 2000s about a ‘Amazing Race’ style competition. One of the characters in it is a sweet man who has narcolepsy, played by Rowan Atkinson, whom I grew up knowing as Mr. Bean. He says always up playing those quirky comedic rules, and this one was no different.
For those of you who don’t know, Narcolepsy is a rare, chronic sleep disorder that causes overwhelming drowsiness. Basically that means that people with narcolepsy experience moments of extreme tiredness where they can suddenly, and without warning, fall asleep. It can last anywhere from a few seconds to several minutes. And when I say ‘without warning’ I mean it. They can be at work, school, reading, eating, mid-conversation, walking, and even more dangerously, driving.
In some cases it’s genetic, but mostly diagnosis of the brain disorder is sporadic. Most get diagnosed between 7 and 25 years of age, according to the National Institute of Neurological Disorders. But, in my particular case it’s brought on by my certain ‘medicine cocktail’ if you will. My doctor called it drug-induced Narcolepsy, which is rare, but can obviously happen in certain cases given the right mixture of chemicals.
And for me… my narcolepsy isn’t shy with rearing its ugly head at any and all opportunities. I’ve fallen asleep while riding in the car, walking, standing, and very often in mid-sentence with friends and family. It would be tolerable if falling asleep was all that it was, but of course it’s not. I fall asleep mid-sentence/mid-conversation and usually forget which conversation I was having. For example, I could be talking about the weather and climate changes, and then I doze off, but when I wake I launch right into a completely different conversation about lap top bags versus briefcases. The person I’m speaking with tends to be incredibly confused, having no idea what I’m going on about, and I have no idea that my mind has chanted the original topic of conversation. I end up being very embarrassed and mortified, and my conversation partner is dumbfounded.
But it’s not my fault! I can’t control it! And it drives me nuts! I never know when I’m going to doze. Sometimes I nod off and wake up without even realizing I was asleep. I’ve been told that when that happens I can be asleep for several minutes and not even realize. I open my eyes thinking that I closed them for merely a few seconds, when in reality it was more like 5 minutes.
Lucky for me, I don’t drive. So I’ve never been put in a really dangerous situation. Though on three occasions now I have spilt hot beverages on my lap, as I fell asleep while holding cups of coffee or chai. And I did fall asleep while standing once. I fell into a wall. It hurt.
They weren’t kidding when that said I was a “fall risk”. I should pay attention more when my doctor talks…
Mostly when others see me do this they won’t bring it up, or are polite enough to carry on talking. But there’s always that one person that just has to make a big deal about it, and usually loudly and in public. Yesterday it was a friend of a friend at a BBQ I went to.
To be fair to me, I was actually exhausted enough without having to deal with this sleeping disorder. I had been up late the night before to board a redeye flight from Honolulu to San Francisco. I’d had maybe 4 hours of sleep and it was a fairly warm day and late afternoon. A few of us were sitting in a circle of chairs on the deck, and I was holding an empty plastic cup in my hand. I woke up the second the cup dropped from my fingertips to the floor, as the noise woke me.
A few turned to look, and the woman to my left reached down to help me pick up the cup as I mumbled an apologetic “Sorry, dropped my cup”. Everything could have continued on as normal, with no pause in the conversation, except that the man sitting directly across from me said in a rather loud, obnoxious voice, “You dropped it because you fell asleep”. Prompting everyone to then turn and look at me with fresh eyes, wondering why this woman in her thirties was falling asleep mid-conversation during a late afternoon BBQ.
I know I could have said I had jetlag. It would have been a perfectly acceptable excuse, and a truthful one. But something in me snapped, I guess I was feeling snippy from the exhaustion. And so I gave him a loud matching response of
“Yeah, it’s my medication-induced narcolepsy.”
I may have even had a bit of defiance in my eye. I was hoping that statement would convey a myriad of things for me so that no more explanation was needed. Such as, yeah I’m sick enough to be taking enough medications that would cause that kind of disorder, and thanks for bringing it up here in front of a bunch of people I don’t know, kudos to you!
He didn’t get the hint. I got a raised eyebrow, and as he opened his mouth (I feared to ask an unwelcome question) I stood up and excused myself, walking away in search of nibbles and people who didn’t out me.
I guess the point of my story/rant is that we see these illnesses or disorders on tv and we laugh because Hollywood glamorizes everything. So we end up believing it’s not a big deal, or maybe it’s funny. But it’s not. It’s not a joke, and it’s real. It’s real, and it’s happening. And there’s no cure.
Another one bites the dust.
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