Sunday Breakfast Club: Lady Gaga and the Awareness Issue

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

So the Twitterverse, Bloggerverse, Facebookverse and probably any other major social network are in a frenzy with the news that Lady Gaga has been tested for lupus. Tested, mind you, not diagnosed with. There was an article on CNN which quoted this original article … here is what the Lupus Alliance released in response to the rumors.

I think the Lupus Alliance makes a good point about the issue of what information about lupus ends up being disseminated in such situations. It is definitely a significant problem. However, that isn’t the issue I would to discuss today. Instead I would like to focus on the tone of the chatter.

Obviously, when any major celebrity mentions lupus we are going to get all riled up. We all know that the more awareness there is in the community, the easier our lives will be. Besides, existed support and understanding aside, it’s a major illness that we suffer from, and it would just generally be nice if people knew it. Still, as I read these tweets I started getting a little worried about their implications. I mean, are we so excited that someone famous might be able to get the word out that we have forgotten how trying this illness is?

I, for one, hope Lady Gaga DOESN’T have lupus, regardless of how much awareness she can bring to the disease… and, I’m sure, many authors of said tweets would agree given a chance to explain themselves. It’s not like lupus doesn’t have a set of celebrities attached to it, but nobody on the lines of Lady Gaga. Still, the point that these days celebrities are one of the best ways to get awareness out for a disease is valid. Lou Gehrig for ALS and Michael J Fox for Parkinson’s are prime examples.

All the same, I’m not sure we’re being fair here. I know celebrities have a limited amount of privacy, but does that mean they’ve totally given up their right to it? Is it fair to demand that they release protected medical information in the name of the cause? I mean, I’m not even willing to provide my name out here in the community for fear of repercussions, so I can see why they wouldn’t want the entire world to know.

How can we do this without wishing the disease on anyone in the first place? How do we balance the need for increased awareness (especially of the level which can only be gained with celebrity help) and still respect their right to privacy?

Sunday Breakfast Club: Bones, S5E18, “The Predator in the Pool”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

I usually enjoy Bones, but this episode had me all riled up. (Yes, I realize that it was a few episodes ago, but I don’t find much time to keep up with my shows…) The premise of this episode was that a woman killed a self-help guru who promised he could take away pain (and effectively cure her fibromyaligia) when his methods didn’t work. The worst part? She claims her pain [miraculously] disappeared now that she had killed him, thereby justifying her actions. The implication was that her fibromyalgia was cured after she had exacted her revenge/frustration.

Now, to be fair, Bones is not a show that’s known for being incredibly politically correct, they often pick cases based on people who do not live within the realm of society’s norms. Recent episodes included witches and hoarders. Still, this one (quite likely due to my own personal interest in the topic) was particularly offensive and, I thought, in bad taste. Living with an illness that people don’t understand is hard enough without major TV shows portraying it so ridiculously! 

While, as far as I know, a complete definition for fibromyalgia is still pending, I think enough is known about it to negate the premise of the show. There was an article about it in the Journal of the American Medical Association (JAMA) as long ago as 1987 – over 20 years ago! Yet fibromyalgia continues to be a misunderstood (or hardly understood) disease.  Sufferers of fibromyalgia, their friends, families, and the doctors who believe them are constantly fighting to convince people that they are truly fighting a painful, debilitating illness not a psychological problem. Now I know that asking for an apology is too much effort for very unlikely return. Still, I wish someone would inform Bones’ viewers of how out of line this ending was.

Nevertheless, my dear readers, here is the question that I put forth this week. What do you think would be an informative way for fibromyalgia to be portrayed by the entertainment industry? I mean, I’m not sure that anyone would make it all the way through a portrayal of the daily aches and pains without getting bored. (Let’s face it – it would be a pretty uneventful show, right? I sure get bored with the tedium of it all.)

Also, if any of you have seen noted other references to fibromyalgia in the entertainment media please let me know. (I’m asking about both accurate or inaccurate – I’m just curious.) 

One Rough Week

Man, it has been one ROUGH week. I had a great weekend last weekend. I spent it with my cousins – their grandparents and aunt (and her son) were in town, so it was a full house. It was fantastic. Good food, the feeling of family, exceptional.

Then came Monday. I thought Monday would be good  - I had a great weekend with lots of sleep and healthy food. No such luck. Monday was brutal. I could only manage to crawl out of bed to use the bathroom – and that too only when I had to pee so badly I couldn’t hold it in anymore. Tuesday was not much better. The fibromyalgia pain seems to be getting worse and worse, it feels like every muscle is on fire but not on fire.. maybe pins? It’s hard to explain the pain. My joints – even the ones that aren’t very swollen from the lupus flare up – HURT. A lot. It just seems to get worse and worse.

The only reason I dragged myself out of bed on Wednesday was that it was a really bad day of school to miss. Some things can’t be made up, so I went. I ran into my doctor that day – he didn’t look pleased at the sight of my joints, but said he hoped the Lyrica (pregabalin) kicks in soon… but it ended up being a 12 hour day. And I hadn’t started studying for my test on Thursday. Which meant 3.30am bedtime and only 4 hrs of sleep. Then Thursday was another 12 hour day.

I COLLAPSED into bed. I slept for 8 hours, but then had a 3.5 hour class today – the kind where you’re watching a procedure and there was nowhere to sit down. I’m sure you can just imagine how much fun that was. My poor bed must be wondering why I never get into bed anymore. I just collapse onto it like my knees have buckled. I feel like someone beat me up with a baseball bat. And after 3.5 hours on my feet (plus the 15-20 min walk in the heat each way) I feel like I did before I slept for 8 hours. I feel like I didn’t sleep at all. Ughhhh.

I have lots of studying to do this weekend, but when will I catch up on sleep?! Sigh. I hope next week calms down a little, because this can’t continue…

A Letter to My Loved Ones

Thanks goes to Birdie Nelson at ChronicBabe Forum for sharing this letter.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit or call me on the ’phone sometimes I probably don't seem like much fun. But I'm still me - stuck inside a body which doesn’t work as it should.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick continuously for months now. I can't be miserable all the time - In fact, I work hard at not being miserable.

So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy! I am merely coping. I am sounding happy and trying to look normal.

Please understand that being able to eat normal food/sit down/walk sometimes doesn't necessarily mean that I can eat normal food/sit down/walk all the time. Just because I managed to eat normal food /sit down/walk yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. The same thing applies to time spent having a social life. Even more so for my ability to concentrate, as my brain gets foggy.

Please understand that a chronic health condition is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying or even thinking; "But you did it before!" or Oh, come on, I know you can do this! If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me a lot worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct - if I was capable of doing some things, any or all of the time, don't you know that I would? I am working with my doctor and I am doing everything I can to manage the situation.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic health conditions can affect the whole body, or as in my case be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense and long. You can't always read it on my face or in my body language. Also, chronic health conditions may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to stand up/sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. A chronic health condition does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. In all likelihood, if you've heard of it or tried it – then so have I! In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic health condition, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic illness. If something worked, we would KNOW. It's definitely not for lack of trying.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. A chronic health condition is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to travel ... You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss although I fully intend to undertake them again, just as soon as I am able.

Thank you for listening. It really does mean a lot.

Sunday Breakfast Club – Happiness is Taking Things as They Are

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

(image from Tumblr.com)

I wish I could remember where I came across this picture the first time. I saw it somewhere approximately a week ago and over the course of the week it got under my skin. It’s become my theme of the moment, a thought that gets me through the day.

There are things that I can’t change. I can’t change my diagnosis. I can’t change its symptoms or the side effects of its treatments. When I say side effects, I mean all the side effects not just the medical side effects like weight gain. I mean the life side effects too. The results of hours and hours spent in bed: the effects on my grades and my relationships. Hobbies I can no longer really engage in. Experiences I don’t know if/when I’ll ever be able to enjoy again – hikes and so on.

I realized that if I spend all my time wishing things were different, I’d never really be happy. There are a million things that I wish I could change but can’t. Of course, this shift in mindset doesn’t change in a day. So I set the picture on my desktop and phone backgrounds as a constant reminder.

On the flip side, is choosing to just accept these symptoms akin to giving up on fighting them? Maybe railing against the disease’s suppressive effects is a psychological boost that helps my body fight this monstrosity. (see related post)

Thoughts? 

Pain is a Funny Thing

Pain is a funny thing. It pervades our daily existence more than we might realize. We talk about physical aches and pains like headaches, stubbed toes, and paper cuts. We talk about the emotional pain that comes from unhappy life circumstances. Countless poems, plays, screenplays and books have been written about emotional pain related to love in particular. Make a trip to the self-help section of a bookstore looking for books about having a happy (read: painless or at least pain-minimized) emotional existence and you’re unlikely to come out empty-handed. Society is obsessed with dealing with emotional pain, because most humans understand these types of pain. We know what it feels like and we don’t like it one bit. Chronic pain is whole ‘nother ball game, but we’ll get back to that in a minute.

Overall we consider it a bad thing, right? If you hear someone is eliciting self-inflicted pain, the societally-programmed impulse is to worry – and to judge. We have medical specialities that specifically deal with minimizing pain. But pain has an incredibly important evolutionary role. Pain helps us to learn – especially as children – which things are dangerous and should therefore be avoided. The fact is, while we may all experience pain, science doesn’t really understand it. Sure, we can talk about certain types of nerve fibers and which parts of the brain are active when we’re in pain. From an emotional perspective we have psychology versus psychiatry – and, of course, all different camps of different theories within them.

Still, we know it’s important. Many medical professionals consider it one of the vital signs that should be collected from each patient. I once heard two professors debate whether the pain scale should be 0-10 or 1-10. On mics. In front of the class. (The argument being that doesn’t a score of 1 imply that you have some pain? So people with no pain should be able to rate their pain at 0.) And, yet, how can we understand what other people are going through when different people perceive the same pain-causing stimulus to cause different levels of pain? An 8 on the pain scale for me might be a 4 on the pain scale for you. We all perceive it differently, and then we deal with it differently too. And both perceptions and coping abilities adapt when we keep dealing with pain over and over. There’s no magical formula for it. What works for me probably won’t work for you and vice versa. But I think the key to learning to deal with the pain is to understand that while everyone might not be able to understand what it’s like to be in pain all the time, pain really does pervade our existence. We can’t escape it any more than we can escape ourselves.

So where, in all of this, does chronic pain fit in? Well, chronic pain - perhaps because of its inherent chronic nature – is both physical and emotional. To put up with chronic pain for so long is stressful on the mind. It’s a daily frustration, and most of the time people don’t even realize that you’re in pain. Even if they do realize that you’re in pain, they really can’t fathom what it’s like to always be in pain. Without that perception, they can’t gain full understanding.

So, to recap... First we deal with the constant physical pain. Then we deal with the emotional pain that it causes. Then we deal with the fact that nobody gets it. (Relax, I’ll spare you the what doesn’t kill you makes you stronger speech.) I think what it comes down to is realizing that pain has a purpose. How much pain my joints are in often tells me when I’m heading into a flare up or that I’ve been overdoing it lately. We can resent it all we want, but in a chronic illness it does occasionally have it’s moments of usefulness. Still, in learning to live with the pain, I think it’s the emotional pain that is hardest to deal with. But deal with it we must, because otherwise how would we have the emotional strength to deal with the physical pain?

Nevertheless, chronic pain doesn’t fit into any of those points, does it? It’s not serving an evolutionary purpose, it’s not a warning signal about health status, it’s not anything really useful at all. It’s just, well, PAINFUL.

Lupus, Me and the Fibromyalgia Makes 3.

I just got back from an appointment with my rheumatologist.

He advanced the prednisone taper a little. Yay! The rest of the news wasn’t as much fun to hear. He thinks the methotrexate just hasn’t had time to work yet, so he didn’t mess with that except to split the dosage over two days to try and relieve some of the dizziness I get with it.

Then he added pregabalin. He thought I might be developing fibromyalgia the last couple of appointments and even tested for the fibromyalagia points two weeks ago but only one was mildly tender. This time almost all the points he checked were very tender. He said a lot of people with SLE develop fibromyalgia. Apparently amitriptyline is also very effective for fibromyalgia pain (and much cheaper) but it takes much longer to kick in. Since it's developing so quickly, he said its better to give the pregabalin, because in his experience getting the fibromyalgia under control faster seems to lead to it going away as the flare up fades more often.  (As opposed to still having the fibromyalgia once the flare up clears up.) … so, fingers crossed!

Sigh. Will it never end?

Sunday Breakfast Club: Grey’s Anatomy, S6E21, “How Insensitive”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

Grey’s Anatomy has been a favorite guilty pleasure of mine since the show first aired, but lately I’ve been getting more and more bored with the show. So when I was told the latest episode was really worth watching, I obeyed but took the comments with a grain of salt. Turns out, my friends know me quite well.  The episode is about a bariatric patient who comes into the hospital, and they worked it around an underlying theme of patient sensitivity. There were some interesting comments made by the patient, his (thin) wife, and the doctors that are caring for him that got me thinking about perceptions…

The patient is always joking about his weight (calling himself a mountain and so on) and the implications it has for his care. Meanwhile, his wife is forever fighting by his side, insisting that he is just like everyone else. I loved the wife character - she was bold and quirky. Totally willing to put people in their place for being obviously inappropriate, rude, nosy and just plain mean: “It’s easy to make jokes about him. You didn’t know him before. You don’t know that inside all that is the man I’ve always known.”  “Joke with him. Make him feel like a person.”

How often do I try to tell people that while I might look different and no longer be able to do things I could before, I am still me somewhere inside a very sick body? I hate when people treat me like an invalid or act like I’m exaggerating how ill I am. This is me... it’s still the me that was in here before… I just don’t have the energy to show you that all the time …

An exchange between 2 doctors:

Dr. Shephard: [after saying they should send the patient a specialist center that’s set up for this type of patient] - instead of “spending our time and resources caring for someone who obviously doesn’t care for himself.”

Chief Webber: He has an illness that he can’t control… he needs help.

I mention this quote, because I think it’s a really key point that many of us have faced. People don’t always think we’re “trying” to get past our illness. They suggest that we pray more or differently, tell us about some remedy or another, or worst of all tell us to “just get past it, forget and move on already.”

Dr. Karev “[…] I’m sorry that we’ve been tiptoeing around you all day trying not to make jokes. But you’re the one that’s gotta stop. Stop calling yourself the fat guy. […] I know what it’s like to have life hand you so much crap that you just wanna sit on the couch and die. But you gotta look at what’s in front of you.  [reminds him that he has a wife that loves him and a baby on the way]”

This is the quote that I really wanted to fixate on. He tells the patient not to joke, but I don’t think moving past this stage into a healthier life should mean that he shouldn’t be able to joke around about his illnesses. Having a chronic illness isn’t an easy place to be, and sometimes you just have to laugh at yourself to get through it because there’s nothing else left to do.  That being said, I think the end of the quote made a point. There are definitely days when I think I just want to be done with it all, and that nothing is worth this… but there is always something in the future that reminds me that there are still things worth living for in this world. For me, it’s my family and the friends I rely on all over the world. And the reminder that I’m working towards a degree I’ve wanted since childhood – a central life goal. A lot has stood in my way, but I’m not going to let this illness stop me from something so near and dear to my heart.

So, readers, what think you? What keeps you going when life has you wanting to sit on the couch and die?

An Apology and a Thank You

You know, I spend a lot of time venting about the people out there who make rude comments out of ignorance (cases in point: rant 1 and rant 2). Still, it seems that the people who suffer from these experiences and my resulting mood swings are the people who support me day to day not the people who elicit the feelings in the first place.

Sometimes my frustration at my symptoms and the world’s treatment of me because of them leads to an outburst at someone I love. Someone who only means well, but inadvertently triggers the suppressed annoyance at a bazillion other things and people.

So today I wanted to tell them that I'm sorry that happens as often as it does and I’m truly thankful for all that they do: the supportive words … the check-ins … the meals cooked … rooms cleaned … loads of laundry done when I just couldn’t muster the energy … outbursts tolerated … and, most importantly in my mind, the time spent just being there – without needing to comfort and console.

Chronic illnesses often lead to lost friendships, but they show you who your real friends are. They are there when you need them. No matter who they are or how old they are. No matter where in the world they are. No matter whether you’ve ever actually met them.

xoxo

go for the threading, stay for the insults?

So I went to the salon yesterday. I wanted to get my eyebrows threaded. No big deal. <15 minutes in and out. I was excited. It was the first day in over a month that I had the energy – and the time – to go take care of it. I may not be able to control the weight gain, but at least I can keep up with these little things that keep me from feeling completely un-presentable. I know, I know, I need to get over the weight issues. I’m working on it, I promise.

The salonist (?), however, felt a need to comment not only on the fact that I’d let my eyebrows get unruly, but also on the fact that I should really be taking care of myself better, “[I mean] look how much weight you’ve gained. A girl your age shouldn’t be your size. You need a good figure to get around in this world […(I tuned her out here as I tried to count backwards from 10)].”

Counting backwards from 10 didn’t work. I was livid. I couldn’t figure out if I should cry or scream at her. Had I a more violent disposition, I probably would have been inclined to slap her. It was just so RUDE! I was well aware of how my eyebrows looked, and that comment was directly related to why I was there. To her, I’m sure it seemed like I couldn’t take a quick 15 minute trip, so OK, fine, make a comment. After all, her money comes from how often people visit right?

Still, there was really no excuse for the weight comment. It was not directly related to any services they provide. Moreover, it was unnecessary. I didn’t come in for a weight consult or a beauty consult of any kind. It’s not like I don’t know that I’ve gained weight, or how our society views fit people versus out-of-shape people, after all. I realize that perhaps it’s my own fault for thinking I could separate the concept of vain beauty in terms of things like eyebrows from body image issues … but she could have kept her opinion to herself, right?

Finally, I let loose with a (tone-controlled) ear-lashing. I informed her in no unclear words that I am, in fact, quite ill and I come here as often as I can work up the energy to do so, but frankly my health is more important than my eyebrows. I told her that she should try being so ill that she can’t get out of bed some days, then add on a boatload of meds that all cause her to gain weight and see how what kind of shape she’s in. She looked confused, but apologized profusely.

I left the salon with the realization that while I could elicit an apology, and, perhaps, some more polite behaviour in the future, I couldn’t really make her understand why I was so upset because it was so far outside the realm of her own experiences. On the other hand, would it have been better to leave well enough alone and just assume she wouldn’t get it anyway? 

“Home Sick” is NOT the Same As “Vacation Day” !!!! (gack.)

So it’s spring break week. The entire point of spring break is to go out and have fun and relax right? Not for me. I get to spend my spring break making up all the exams that I missed. It sucks. I mean, what could I possibly need more than a week of rest and recuperation? (Well, other than a cure, of course.) Still, it makes sense to take them spread out over this break, since this way I can focus on just one exam at a time instead of trying to review the material for the makeup exam and learn the new information for the next one at the same time…

I’ve been working hard to try and keep people’s insensitive comments from getting to me. I really have. Sometimes I just can’t manage it though. This is a chat convo with a classmate from earlier today. The only thing I edited was to take out the names:

Classmate: hey! hows your break going?

Me: not too bad. trying to catch up on sleep – and exams i missed… hows yours been?

Classmate: ohhh, youre making up exams?

Me: yeah. missed a few when i was out sick, so im taking them over break. kinda sucks to be studying over break, but oh well…

Classmate: but you already got the days off that you were sick! so those were vacation days and these are class days! LOL!

Me: ummm, actually, i was home *sick* so those weren’t vacation days

Classmate: but vacation is for sleeping. and you slept on days you were home sick right? so that’s vacation.

Me: so you would say sleeping in on spring break day is the same as being sick with the flu?

Classmate: well, no, not for ME.. but you spend so many days in bed it’s the same thing right?

At that point I sent my classmate the link to the Spoon Theory, and said that I hoped it would help explain better. Who knows if my classmate will read it, but hey it was worth a try.  I feel like it was kind of a cop out versus explaining, but I was seeing red rage and I didn’t want to say something offensive that I’d regret. I guess maybe ill try to follow up on it again after break and try to explain myself. It’s hard enough to miss class without people thinking that I’m not here because I’m on vacation… 

Sorry, Sir, “Damsel in Distress” Just Isn’t Working for Me Anymore

[This post was featured in ChronicBabe Blog Carnival #3: Learning to Live With Pain.]


If you walk into the hospital room of a child with cancer, I’m sure you’d see all the things you would expect to be there – IVs, medical charts, beloved toys and evidence of amazing caretakers who rarely leave the child’s side. You might breeze over the drawings on the wall – after all, a child living in the hospital doesn’t have a fridge to proudly display them all. You’d be amiss in not taking a closer look. Look for a monster or some other unrecognizable creature amongst the pictures of houses and family and friends and pets. Look for the picture of the cancer.

Children are often taught to visualize their diseases, to draw a picture and stick it on the wall so they have a mental image of the enemy they’re fighting. I don’t know why they don’t tell adults to do this. Maybe they think we’ll be offended that it’s too juvenile. Maybe they assume that we’re old enough to deal with our pain on our own, I don’t know. I, for one, think it’s a very useful tool.

To me, my illness, and my pain, is like a dragon. The kind of irritating one in fairy tales that is always defeated but never killed. The kind that invariably returns to torment the village again another day. The kind that nobody can seem to get rid of. The problem with a chronic illness, I’ve found, is that after you’ve been fighting that dragon over and over and over and over ... it’s the same battle and it’s gotten old. How many times can you fight the same battle? After all, it’s not like you’ve got a new weapons arsenal or some gloriously juicy intel on the dragon’s inner workings to use against it.

It’s so easy to get frustrated with fighting the dragon that we go, "ok fine, I’m just going to sit back and let somebody figure out how to get rid of this monstrous thing and come save me from it’s evil ways." It’s often easy to fall into a damsel in distress type syndrome. I sure did.

... but I’ve come to realize that this doesn’t really make sense. After all, it’s me against my disease. My dragon isn’t attacking from some cave somewhere – it lives inside my own walls, it turns my own best defences against me.  Damsel in distress makes for a good fairy tale (who wouldn’t want to be the beautiful princess without the moon face and weight gain courtesy of our favorite champion of choice, Sir Prednisone himself), but it doesn’t make for a good reality. If we stop fighting, the dragon wins. Because we’ve forgotten that there’s one thing the dragon can’t touch – and that’s our emotional state. We can fight the physical attack with the physical medications, but our mind is our own and therein lies our advantage.

So I’ve decided that I’m not the damsel in distress in my fairy tale. Instead, I get to be the noble, marauding knight in shining armour. Historical clichéd roles be damned, this is MY fantasy! So off I go, mental shield up, sword at the ready (well maybe a plastic one, because I think trying to swing around the heavy metal ones would probably make my joints pretty angry) to fight the dragon that pervades my existence.