The Relief of Belief

For my fellow comrades who have lived through the trials and tribulations of trying to make the world see us as we truly are, sick and in need of help, you understand more than anyone how hard this life is.

We didn’t choose it. Chronic pain is not something we asked for. Invisible illness isn’t something we wanted. Autoimmune diseases are not a life choice. And yet everyday we are treated like this is our fault. Like we brought these horrendous ailments on ourselves because of our diets, our amount or lack of exercise, our unwillingness to just “get over it”. We are judged, shamed, treated with prejudices, mocked, and generally frowned upon because of one simple fact: we are sick.

There is not one day that goes by where I am not asked why I’m not doing more to help myself. I cannot explain the depth of my exhaustion and exasperation at the ineptitude and rudeness of these individuals. I do not know how much longer I can continue to be polite and forgiving towards those who push their unsolicited “advice” on me. I have been sick for over three years now with this incurable disease, and in this time have met less than three people who share it with me. These three people are the only people, besides my doctors and others with similar chronic ailments, that are permitted to give me advice on how I should take care of my body.

As I’ve stated countless times before, having experienced a migraine is not the same as experiencing daily chronic pain. Neither is being tired after a long day at work, the same as being too exhausted by your disease to get out of bed. That being said, No, I don’t feel lucky that I get to take a lot of naps. I am happy that your cousin’s best friend cured their cancer with herbal tea, but I’m sorry, that’s really not the same thing as what I’m going through. I also understand how much You hate BigPharma, and how they are ruining the world with their drugs and high price points, but you have to understand that I can’t just stop taking my medications. I could die. Seriously.

 Is that fact something you can at least wrap your mind around? Or is my life less important than your beliefs?

Speaking of beliefs..

When I first filed for Social Security I had to live off the belief that there was someone out there that would see me for who I am, and what has happened to me, and help me. Little did I know how hard that concept would be for people. How cold hard facts placed right in front of someone’s face could still be pushed aside, ignored.

Initially, not only was my disease not taken seriously by the Social Security Department, but also by friends and family who could see my ailments first hand. How could anyone dispute what their own eyes could see? My swollen fingers weren’t supposed to be the shade of eggplants. A healthy woman in her early thirties shouldn’t cringe when she stands up from a chair. And even if the physical sight wasn’t enough, shouldn’t the fact that trained professionals were prescribing me STRONG medications be a clue??

Two years of chronic pain, heavy medications, failed treatments,  and sweat and tears… And in those two years I was denied by the Social Security Administration three times for “insufficient evidence of disability”. Ridiculous. Three pointless denials before I broke down and hired a lawyer to save my own sanity. And still another year followed slowly before I was even given a chance to plead my case to a live person, and not a stack of papers.

And tell me why my illness, my disease, is looked at by one person, and that person decides if I’m sick or not? The system scares me, to be honest. Three years of agony, and my financial and medical future is decided on by one person whom I’ve never met before. Someone who hasn’t seen my daily struggle, can’t see me when I’m in the ER every month, isn’t with me as I take my thrice daily handful of pills, and wasn’t by my side in March when I lay on the bathroom floor unable to move.

The idea that something so important is based on a decision of one person is scary. But all I needed was one person to believe me. Just one. One person would seal my fate, no matter what.

On May 11th, 2016 a letter was written to me. It’s contents were the decisions of one man, and one man only. My hands shook as I opened the envelope, and I can honestly say that I’ve never felt such paralyzing fear in my entire life. Three years of waiting. Three years of wondering why people could not see what was happening to me. Wasn’t it as painfully obvious to the world as it was to me?

Letter in hand, I read the text. And then I read it again. And then again. Tears spilled over my lower lids, and I hastily brushed them away, only at that moment realizing my very public placement inside my favorite coffee shop.

Notice of Decision: Fully Favorable

Three years. Three years for one person to finally look at me and decide I needed help. No, not decide. Know.

And following this statement of decision was a declaration of why this one person came to the conclusion they did. It’s a very long declaration, so I won’t be quoting the whole thing. But there are a few lines that really spoke to me, and led me to greatly respect the person who wrote them…

“I give great weight to these findings as supported with the overall medical record and findings of the claimant’s Rheumatologist, and agree completely with the testimonials given by (said) doctors.”

Finally. After three years of appeals, and chasing down doctors notes, labs, and medical records, there is one person in the Social Security Administration that sees how sick I am. And not only sees, but understands what I’ve been through. The relief of that acknowledgement was immeasurable. And to make it even better, (not that it was necessary to, but gosh was it wonderful anyways) a personal testimony of how my case was wrongly denied.

“….the State agency consultants did not adequately consider the claimant’s impairments, and rendered their opinions prior to completion of the medical record…”

Upon completion of the letter I initially thought I’d be angry at the fact I’d been wrongly denied for three years prior to my approval. But I found instead that I was only elated that I had finally found peace. Peace through the fact that the one person that I needed on my side, came through for me. I cannot quite put into words what it feels like to finally be believed. To say it’s a relief would be a gross understatement, but for now, it will have to do. 

Three years for someone to believe I was truly sick and truly needed the help. They made their choice based on extensive medical record and the testimony of my doctors and myself. That’s what they needed to determine their ruling. What is it, do you think, that my friends and family need to make theirs?

To be clear, I am extremely grateful that after three years a judge has finally ruled in my favor regarding Social Security benefits and Medicare. I will however not be receiving said benefits for quite some time as told to me by the administration. I am lucky to have gotten them, yes, and now get to play the new waiting game of When do my benefits start? I’ve been told I can look forward to them in the next six months. Phew, long time! And because of this extensive waiting period, my donation page is still open for financial help and support. I thank everyone who has been a part of my journey for Social Security Disability help!

For financial support: http://www.gofundme.com/sixthousandsteps

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Marking Time

I often find myself thinking a lot about time. Not time in the sense of watches and clocks, but more as how it relates to me, and how it passes. For someone with an illness or a disease, time can mean a lot of different things. Time can mark minutes til your next medication feeding, days until another doctors appointment, weeks between ER visits, or years left on your life clock. I’ve been thinking about how precious my time is. And how limited it can truly be.

I marvel at how my time is perceived by different people around me. A family member made a comment to me the other day about how well they thought I’d been doing in the last six months. I found it to be such a strange observation, as I felt the last six months had been fairly brutal on my body and mind. Since January I had been in the ER five times, broken three ribs, had one particular episode where I was very close to almost dying, and had sustained a lot of mental stress surrounding my filing for Social Security Disability Benefits. How did that appear as doing well?

I guess it all depends on everyone’s perception of time. For the person who thought I was doing A-OK, well, I guess that was to be expected since they only saw me on my good days. No one wants to visit or support during the bad days, so most of my family and friends only see me on manageable, low-pain days. And if there were more of those days in their memory, then I guess a lot of time had been spent with me on good days. At least they were showing their support, however, by wanting to see me. They may have had a different perception of how I was actually doing, but at least they made time to see me often enough to draw that conclusion.

For my mom, who is my primary caretaker, my time has been marked as not so well. She sees the good, the bad, and the ugly. Now, in saying this I’m not inferring that my last six months has been a torturous journey. I have certainly had my good days, maybe even good weeks. But for us, the time marked is seen through a different pair of lenses. While this part in her life was definitely not chosen, my mom has done extraordinarily well in her role. I may not have even made it through to this time and place if it were not for her. My mom always has time for me. She understands more than anyone what I’m going through and does everything in her power to help and support me.

A friend of mine was recently saddened by a situation involving some of her close friends. It was made known to her, and apparently not in a nice manner, that  her presence was unwanted at a social gathering. Understandably, she was devestated by this. But upon comments from concerned friends, she lamented that while their behaviors were unsatisfactory, the people in question were still her close friends. I understood exactly where she was coming from regarding letting bad behavior slip by when it concerns people your known a long time. While having not dealt with the exact same scenario, I have on many occasions let people walk all over me, or treat me unfairly, only because of our history and the time spent knowing them.

The whole ordeal gave me a lot to think about, and actually plagued me with thoughts on it for a few days. My time, more so now than ever before, is precious. Because of this, I want to surround myself with people who want to spend time with me. Not because they have to, or because they feel obligated, and especially not if they feel guilty. But real time spent because of love, friendship, and support.

My lens, much like an hourglass, views my time like grains of sand, slipping through my fingers at the beach. I see it in front of me, clear as day, and yet there is nothing I can do to stall or slow it. And one day, the sand will all be gone, along with my pain.

 I have an old friend who works extremely long hours, with little to no breaks, and often for weeks at a time without a day off. She is very dedicated to her work, so her full schedule while hard, is not a deterrent. Because of this, and the fact that she travels a lot for work, we rarely see each other, often going months between visits. However, she always commits to making time to see me and catch up whenever she can, sometimes sacrificing her only day off in weeks to drive to my side of the island to take me to lunch. And when I object, which I often do as I’m concerned she doesn’t rest enough, she always tells me that

“You make time for the important people in your life, Christine. Actions speak louder than words.”

I cannot agree more with that statement.

I’ve always been a big ‘people person’. I have a lot of friends, a lot of acquaintances, and I’m constantly meeting new people. And while my disease has changed my life a lot, and I’m unable to make as much time as before to accommodate seeing all my friends, I make a pretty good effort. I’m pretty good at keeping to my social engagements, and even if I’m ill and have to cancel due to a pain flare or last minute doctor’s appointment, I almost always reschedule for the next day or the closest next time available.

I have someone else in my life, whom unfortunately does not make time for me, despite their insistence of how important I am to them. They make plans with me often, and yet there is always a last minute cancellation, with apologies all around, though sometimes there’s no explanation at all. As much as the world is in a rush, there is always time to make a quick call, apologies can take a few sentences at the most. Hell, they can even be texted. Anyone who says they don’t have the time is lying.This person often makes it very clear that I am to drop everything to accomodate them when their schedules clear, however if I ever have a request or an invite, they have no time for me. Frustrating… I can’t stand flakiness..

Actions speak louder than words.

Here’s where marking time becomes important. Whether you’re like me and have a debilitating disease, or you’re a regular Joe Schmo, your time is important. Your life is important. So the people you give your time to are also important. Why do we give our time to so many people who make it clear that it’s not as important as them and theirs? Why are we wasting our efforts on people who don’t return our love and support?

Is it because they’ve been around a long time? Does length of friendship or family history make it ok for others to walk all over us, or hurt our feelings? The answer is no. Family and friendship mean nothing if love and respect don’t go hand in hand.

Time is important no matter where you are in your life journey. We respect time, and in turn we should respect the time of others as well as ourselves. I realize that while my time may be limited, and my life span will unfortunately be cut shorter than others of my generation, my time is still important. So I need to surround myself only with those who want to play an active role in my life. If you truly believe you are an important person in my life, well… Prove it.


 

 

 

Thanks to all those who continue to read my blog and have supported me throughout my journey with Rheumatoid Disease. If you like to help support me on a final basis please visit my page at http://www.gofundme.com/sixthousandsteps

Mahalo

Me, Myself, and I

As someone who has a lot of time on their hands, I find myself on social media quite a bit. It’s easy as pie to just tap my phone to see what’s been posted on Facebook or Twitter, or to have a quick laugh on Reddit. Quite honestly, I probably check my Facebook status anywhere from 15-30 times a day. A bit excessive yes I know, but be honest with yourselves, you do it too! Seriously, why don’t you go ahead and count sometime… I bet you’ll be surprised at how often you do it.

I think it’s part of human nature, the incessant desire to never miss out on anything. We want to be a part of everything and anything, and we feel let down if we aren’t “in the know”. This could pertain to anything too, be it sports scores, which celebrity is shagging another, your own friends relationship status updates, or how many potato chips the girl who’s dieting in the cubicle next to yours just ate. We have to know each other’s business, secrets, feelings, happiness, and pain. It’s just the way it is. We are obsessed with information.

My own personal vice is Who has read my blog?

I constantly check my stats on WordPress and Facebook. Has anyone new read them? Did they like what I wrote, did they leave a comment? Do people understand what I’m feeling? Am I making sense? Do they connect with the words on a spiritual level, or a physical one? Or do they even read them at all?

Have you ever noticed that you can post something online like a really long status update that’s a few paragraphs, or a blog, or an article, and people click like within seconds of you posting it? What exactly is it that they are liking? Cause it’s not your post, there’s no way they read it hat quick. So basically they like that you posted anything at all. And then you have no frame of reference on whether someone truly liked what you posted because they are just obsessive “clickers”. Someone posts something and hey are compelled to immediately react to it. Drives me nuts.

But why am I really annoyed by this? I mean, I don’t write my blog for anyone but me. Seriously. I may say that I love checking my stats and enjoy reading comments left, but at the end of the day, my blogs are for me, myself, and I. They are a way for me to express my darkest thoughts and feelings. Because in a way, they don’t feel read until I put pen to paper, or in this case-stylus to kindle. When I see my words, my feelings, my thoughts, well, that’s when they become real. It’s like saying something out loud makes it real for some people, well, writing it down makes it real for me.

It helps catalogue my thoughts, wishes, and dreams. I can always go back through them and remember exactly how I felt on that one day. Just like a diary, my blog is an extension of who I really am on the inside. So maybe my obsession with stats checking is really more about wanting to validate that people around me understand how I’m feeling.

In my last blog I talked about realizing my fears. Actualizing them and understanding how they affect my life and how in reality they have made me who I am today. Before writing that blog I lived in the fear of people knowing what I’m really feeling. I was saving their feelings and making them comfortable by not sharing my truths. And for what? So they don’t have to feel bad about my disease. What a senseless waste of time that was. Why should I hide what was really going on? Why were others comforts more important to me than my own? I guess I realized I was people pleasing, something that I’ve given up in recent days. I learned through putting my feelings out there that I was doing more damage than good. Mind blown.

Life is a journey. We learn new things every day, especially about ourselves. It took me three years to learn to put myself first. That time frame sounds ridiculous when I think about it, but that was my reality. But then I put my feelings into words and made the necessary changes. That’s what my blog helps me do. Realize what needs to change, how I can grow, and make it happen through actions.

Todays life lesson and realization is that social media does nothing for us if we aren’t commiting to being real and being ourselves. You’re not doing anyone any favors by liking every single thing that’s posted, or checking statuses every two minutes. You’re just feeding a compulsion to know information that isn’t necessary for your life. What we should really be focusing on is OURSELVES. What helps us move forward and grow. My life isn’t going to change drastically if I have more followers on Twitter or WordPress. The only thing that should matter is me, myself, and I. How I live, how I learn, how I grow. Everything else is just  fodder. It’s time to remember that I am here for me.

 

 

If you would like to help support me, please visit my page here to learn more about my journey. Thank you.

Should I or Shouldn’t I? A Dilemma of My Disease

When I opened my email inbox this morning I had a new article from Psychology Today, an online magazine that I subscribe to. The title of the article was “Should I or Shouldn’t I?” The Dilemmas of Chronic Illness, written by Toni Bernhard, a fellow victim of a chronic disease. The entire article was like an insight into my brain,  basically discussing the day to day difficulty we chronic illness patients go through trying to keep up with the rest of the world. I’ve personally dealt with these questions in my own l life several times, so I’ve taken the same questions Toni addressed personally in her article, and have answered them with my own opinions/feelings here. Perhaps it will provide insight into my life and actions that friends and family have wondered about..

 

Do I accept an invitation from a friend to get together or do I refuse it?

For me, this really depends on how far out the invite was received. If it’s weeks in advance I tend to tell the person that I’m interested in spending time with them, however I don’t know how I’ll feel that day so let’s make the plan tentative. I don’t want to flat out refuse an invite in case that person writes me off, and I don’t receive further invites. But at the same time, I hate being flaky. I would prefer a plan be tentative so if I’m not feeling well it was already suggested that I may not be able to attend. To be clear, I love spending time with family and friends, I just don’t always know how I’m going to feel.

 

Do I tell family and friends how I’m faring with my health or do I keep it to myself?

Sometimes, I feel if I talk about myself I’m worried they are tired of hearing it. My chronic disease is is a large part of my life, so the reality is if someone asks me how I’m doing, they are asking about my health. I worry about sounding like a broken record, but if I don’t talk about it, I’m isolating myself from others. My pain therapist often stresses how important it is to talk with friends and family about what I’m going through so I don’t risk getting depressed or bottling things in. Though, even with his advice, I find myself couching it a lot. Not telling people the true extent of what’s going on because I don’t want to sound like a complainer.

 

Do I try to look my best when I’m around other people or do I let my looks reflect how I’m really feeling?

If I try to look my best, I’m concerned that people will misinterpret the state of my health. I’ve always been really into makeup and fashions, and since becoming sick I don’t have the opportunity to dress up much anymore. So on days where I feel even remotely energized enough to make the effort, I tend to want to put makeup and a cute outfit on. But is this sending a message that I feel totally fine? Because there is never a day or even an hour where I’m not in pain, and or feeling the affects of my disease.

But if I let my looks reflect how I’m feeling, it usually brings my spirits down. I hate leaving the comfort of my home feeling dowdy and unkempt. Sure, I look exactly how I feel, but that means I look like crap. It brings my morale down and opens me up to more unwanted criticism, such as “Wow, you don’t look so good”, or “How come you don’t put some makeup on to hide those dark circles?” Vicious cycle.

 

If a special opportunity arises, do I go beyond what I know my body can  comfortably handle or do I play it safe?

If I participate, I could wind up stressing my body or becoming too exhausted, landing me in bed for days. If I don’t participate, I could be missing out on fun or uplifting life experiences that can keep my morale up.

I was recently invited to a fashion show style event, that some friends were running. It was planned weeks in advance and I was a tentative guest, not knowing how I would feel on the night in question, so I didn’t say yes definitively. I knew the event would be a lot of fun, many of my friends were going, and there was a lot of excitement surrounding it. However, I also knew the event would be a high energy affair, and be a late night. Even throughout the morning of the day of I was on the fence on whether I should go, but leaning towards yes, as I had been feeling quite isolated.  Unfortunately that day I had a lot of doctors appointments as well as clinical testing, and I was exhausted by late afternoon. I knew I could probably take a nap and still really and go to the event if I really wanted to. But knowing me, and knowing my body, it would have been a mistake. One that I may have had to pay for days on end. So I didn’t go. Was I said that I missed a fabulous opportunity to see a great show and socialize with friends I hadn’t seen in awhile? Of course! But health comes first, and I have to trust my instincts.

 

Do I try a new treatment someone is urging on me or do I take a pass?

I’ve talked several times about how often people urge me to try new diet schemes or anti-inflammatory treatments that they swear worked for their best friends hairdresser’s accountant and could for me too. It is very frustrating to have things like that constantly pushed in my face, especially when the person in question isn’t sick themselves or haven’t done the so-called miracle cure diet.

So usually in this case I take everything with a grain of salt. Sometimes I’ll do research of my own, looking through various websites and articles and reviews to see if these treatments really do work. However, I have to constantly remind these people who mean well that just because a treatment or diet plan worked for one person, it doesn’t mean it works for everyone. I mean if that were the case, our country wouldn’t have an obesity epidemic, because everyone would know the one and only diet that works.

I appreciate the sentiment and wanting to help me with my health, and my chronic pain, and my weight gain. But I’d prefer if everyone would just let my doctors do their jobs, and keep the “helpful suggestions” to themselves.

 

Do I pursue a new interest even though it exacerbates my symptoms or do I stick to my old routine?

If I pursue it I could be opening myself up to new interests and entertainments that can enrich my life. It could boost my morale, lower my depression, and have an overall positive impact on my mental health. However, depending on what it is, I could be causing myself more physical pain and exhaustion in the long run. Which in turn means days of bed rest where I’m exacerbating my symptoms, prolonging the pain and denying myself fresh air and movement.

If I choose not to pursue it then I could be cutting myself off from a healthy lifestyle change, that could be good for me long term. I’d also be passing up the chance to focus on something other than my health for a change, which in turn raises morale. It’s a slippery slope.

A great example of this is my adult coloring. Last year I was introduced to the now very popular phenomena of adult coloring. They now make hundreds of beautiful coloring books for adults with intricate pages of all sorts of designs. I lean towards the paisley and mandala varieties. I started out slowly, with just one book and a small box of colored pencils. But I loved it! And started doing it more and more, obtaining more books, a larger pencil set, and electric sharpener. I now have a coloring box that sits next to my couch, filled with 5 books of different designs, two boxes filled with a variety of colors, and two binders filled with completed pages. The coloring, while a great distraction from my disease, also calms me and is very therapeutic.

However, there is a downside. I have a chronic pain disease that mainly affects my hands and feet. And after an hour or so, my hands get too cramped to color anymore. But I love my hobby so much that sometimes I ignore the pain and discomfort and push through until I literally can’t move my fingers anymore, and blisters have formed at my knuckles. Every time I do this I know I should stop and just color another day. But my ocd pushes me to finish the page, and it’s so nice to do something so enjoyable.

I guess it’s different for everyone. But I’ll admit that I do cause some of the pain I contend with myself, just so that I may enjoy some creature comforts.

 

I understand that everyone deals with their disease differently, some things being harder than others, and it can be a challenge. Life is a challenge. I know that I just have to take one day at a time, step by step, and that I’ll find my footing and my path eventually.

 

If you’d like to help support me in my path and journey please visit my website here. Thank you for reading and sharing me experiences.

Invisible

Three years ago I used to think I could stand to lose a few pounds. Maybe just off my belly or hips. I wasn’t fat, not even close. I had a beautiful curvy body, with perky boobs, and (what I now realize) a great butt.
But, society pushes images of model thin women on us. Also there’s that constant reminder at the checkout line at the grocery store that we should be buying health food magazines, and basically everyone should just be a vegan hippie if you want the perfect beach bod. The need to be skinny swirls around us every day. So, back then, with societal peer pressures, I was convinced I’d be truly beautiful if I could knock off the slight muffin top thing I had going on.
Gosh, how stupid I was. I look at pictures of me then and realize how beautiful I already was. I didn’t need to change one thing about myself.

Fast forward three years and I look in the mirror to find a stranger staring back. I never knew I could look like this person invading my body. Who is she?
Three years of prednisone has caused my body to double in size. The doctors say it’s water weight, but if that’s the case then someone needs to take a needle to this balloon. This isn’t my stomach, this round thing protruding out in front of me. I look pregnant.
My breasts have tripled in size, but not in a sexy, voluptuous way. They are heavy and hang, and now I deal with breast sweat and the rash of pimples that comes along with it. Gross.
But I could deal with the fat body had I at least still looked like myself. I don’t though. My doctors call it ‘Cushingoid’, but prednisone users more commonly refer to it as having ‘Moonface’. The face in the mirror is not my own. It’s round and flat, my eyes and once beautifully defined cheekbones have become lost in the excess skin. I don’t like her. She’s ugly, and I want her gone from my life.
Three years have past since I started this journey of illness, pain, and suffering. I’ve lost so much of who I used to be. And the only thing I’ve gained is more pain and 70 pounds of “water weight”.

But you can’t see my suffering when you look at me.
You don’t see the holes in my bones that look like the bones of an 80yr old woman, and not those of a 34yr old.
You can’t see all the fractures that Osteoporosis has given me, the tiny breaks that cause monumental pain.
You see me limping or walking with my cane and figure I probably had an accident, not that this will only get worse and in a few years I’ll be in a wheelchair.

My disease is invisible.

You see all this disgusting weight and think I must over-indulge, binge eat, or just can’t say no to food. You don’t know that I fill my days with fruits and vegetables. That I’ve cut out coffee, soda, sugar, and fast food. That my life is full of dieting and exercise and yet as long as I’m on prednisone I will continue to have this round lumpy body. And that there is absolutely NOTHING I can do about it.

I move slowly because the flesh around my joints are inflamed and infected. If you took the time to look closely you could see the swelling in my knees, how fat and puffy they are. You could see that my hands seem abnormally large due to the inflammation. That my knuckles are discolored and squishy. That my feet look like football’s with more swelling.
If you took the time to see how slowly I have to move. That every step I take is calculated to ensure I don’t hurt myself. If you watch my face closely you will see the pain there that I try desperately to hide. That every single movement is like a butter knife slowly being pushed into a bone.
But most people don’t see that.

Because my disease is invisible.

People only see what they want to see.
A fat girl.
A pregnant girl.
Too lazy to walk quickly.
Using a cane for attention.

My disease is invisible.

They don’t see my reality.
The excruciating pain of my day to day life.
Wrestling with myself to do daily tasks.
Willing myself to stand up without crying out.
Not being able to dress myself on the bad days.
Needing help to shampoo my hair.
Crying in my bedroom when the pain and suffering becomes unbearable.

My disease is invisible.

I am invisible.

If you would like to help support my illness financially please feel free to make a donation:
Christine Lilley’s Life Fund
Thank you.

My disease is invisible.

Why me?

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?

Faking It

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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