“‘Good’ Bad Day: Descriptive phrase denoting a day of higher than usual pain/symptomatic levels, but one in which the Spoonie is still able to enjoy oneself.”
*note: this is my definition; yours may differ*
These days are sometimes the unicorns of my chronic illness world; few and far between to the point that sometimes in between them, I wonder if they really happened or I’ve imagined them–normally higher symptomatic levels mean misery and less activity or being stuck in bed for me.
Such days are often take-a-break-from-life days imposed by my body and its limits or by me ignoring my body and its limits (we all do it sometimes despite our best intentions)…and more and more often since I had to give up meds and treatment due to losing medical coverage, they are non-days where I may or may not be even minimally functional.
But occasionally, the heavens shine on me and grant me a day that even though I feel exceptionally terrible on, I’m able to interact either online or in person and just plain enjoy myself, pain or not.
Yesterday was a “good” bad day.
Yesterday, many in the migraine community were caught up in Shades for Migraine and having so much fun with it that I felt better mentally just watching their stories and posts and new graphics inspired by the big day. It was contagious; I found myself constantly pulled back in; I had a storm of inspiration for new graphics and created a social media profile pic frame. A few friends asked me to add it to their pics, and a few strangers did, too, which naturally thrilled me; few things make an artist happier than people who appreciate his/her work, but I also enjoyed connecting with new people in the migraine community.
Before I knew it, it was midnight and I needed sleep…in other places the day was just starting, and along with it, more migraineurs across the world were joining the party. As I strapped on my trusty ice pack waited for the Sandman to appear, I was in no less physical misery, but I was content and even happy.
No matter what I was dealing with right then, I was a part of one big extra family I’d never expected to be part of several years ago. I was surrounded by migraine brothers and sisters and those who love us.
No matter how bad things get, those people are always there for me…and I hope I’m there for them just as much.
Chronic, episodic, silent, hemiplegic…and every other variation…you are my family.
And we are fighting together, for ourselves and others.
And if that thought can’t help a bad day feel somewhat more tolerable, I don’t know what will (Yeah, except maybe a cure…I’ll shut up now).
For some of us, June 21 is the longest day of the year. We thought it would be an appropriate day to show solidarity with those who have to live with this invisible, unpredictable and stigmatized disease.
Migraine disease is more common than Alzheimer’s disease, Parkinson’s disease, epilepsy and multiple sclerosis combined. Shocking, huh?! You may also be surprised that despite that fact it only gets a small fraction of the available neuroscience research funding and there is a very small number of neuroscience researchers who decide to take on migraine as a project. Migraine disease is not getting the attention it deserves; all the while, millions of people are suffering year after year behind closed doors.
So….on Wednesday, June 21, let the world know about it! Let the millions of sufferers know that you care… that you know they aren’t faking an illness… that you know much more needs to be done to find a cure and give them relief… that you want to help give migraine disease the prominence it deserves.
Wear some sunglasses all day long. They just need to be visible…hanging around your neck, hanging from your shirt or propped on your head are options if you can’t wear them on your face the entire day. Wear them indoors and in places where people usually don’t wear sunglasses. Be silly. Wear goofy ones if you dare. Let them make a statement… Start a conversation…
Post a photo of yourself (and friends/co-workers) wearing your Shades for Migraine on social media using the hashtag #ShadesForMigraine.
We are trying for a “viral” awareness campaign!
Share this campaign with your friends and family…let’s make migraine a big deal!
The only problem with these cheap Walgreens sunglasses is they’re so dark I can’t see well at night or indoors.
Migraine causes us to be hypersensitive to stimuli around us, in the environment, or that we come in contact with, much as asthma does for someone with the condition.
Like asthma, if you don’t have migraine (which is the condition, not the individual attacks), your body is not wired to hyperreact as ours does.
Triggers (stimuli) are NOT the cause of attacks. Migraine disease is the cause.
This is a genetic neurological condition, not a headache at all. Migraine can occur without the symptom of head pain and can still be disabling.
Photophobia (light sensitivity) can occur before an attack, during an attack, and can even be a problem between attacks for many migraineurs. Since I’m daily chronic, it impacts my life in many ways (for some examples of how it affects me, read my previous blog post Light Sensitivity (Photophobia) and Migraine).
With the month of June being Migraine Awareness month, many organizations are working on ways to increase and spread the awareness of migraine and to try to make migraine more visible. One such group is Shades for Migraine. They have designated June 21 to be Migraine Solidarity Day and are asking for individuals to participate by wearing sunglasses all day! Since this day happens to be my birthday, I am aware that June 21st is the longest day of the year. While the importance of sunglasses may seem strange to some individuals, for those who experience photophobia it is definitely something that hits home. For many of us, sunglasses are a major life necessity for survival.
Shades for Migraine is an event to show solidarity with migraineurs and to raise awareness of migraine, and it’s on June 21st. I participate in it many days by default–I’m one of the many with migraine who have abnormal light sensitivity all of the time (“all the time” means just that–it doesn’t go away). I’m almost positive I’ll be participating tomorrow, too.
If you are also participating in Shades for Migraine, head over to my blog’s Facebook page and post some pics of you in your shades!
Said everyone with light sensitivity accompanying/preceding a migraine attack ever. (Too bad we often can’t sleep through the symptoms…sigh.)
Photosensitivity is a term used to describe an abnormal sensitivity to light. For practitioners, photosensitivity is a vexing symptom since the pathophysiology of its cause is not well understood and little is known about appropriate treatment. For the patient who has the symptom, disability may ensue and frustration from lack of understanding of the medical community can be prevalent.
The term “photophobia” is somewhat of a misnomer since phobia refers to a fear of light. We use the word to denote patients who have an abnormal sensitivity to light. While all of us have experienced an uncomfortable sensation when we have gone from a darkly lit room or theatre to the bright outdoors, we soon adapt to the sensation and the light is comfortable again. However, in some patients, bright lights—even normal lights—are always experienced as uncomfortable. “Photo-oculodynia” refers to a non-painful light source producing pain in the eye. “Dazzling” is a term used when things appear too bright, but, while everything is bright overall, the light is not bothersome or painful.
Etiology of Photophobia
Many conditions cause photophobia, and the most common condition is migraine. Indeed, photophobia is one of the cardinal features and appears prominently in the International Headache Society’s classification of migraine. Photophobia has been shown to be present during and in between migraine attacks. Furthermore, just having the symptom of photophobia predicts that the individual has underlying migraine (Muelleners et al).
For many of us, light sensitivity is a real problem; not only can it accompany or be the first sign of an attack–it can set off an attack. Some chronic migraineurs find that for them, photosensitivity becomes persistent to the point of being a constant (I’m one of them–um…yay? Do I get a prize? Maybe sunglasses…). Some of us end up getting tinted lenses or wearing sunglasses indoors on a regular basis.
For me, being daily chronic and constantly light sensitive, sunlight and fluorescent lighting are my worst enemies (why I don’t tan and rock the Casper look). At worst, they can cause pain to flare horribly. At best, they’re a low key irritant that raises my symptomatic level a notch or two.
I avoid fluorescents if at all possible, but unfortunately grocery shopping is a must (can’t starve myself despite nausea trying, and the others in my house kinda like food). Fluorescent lighting and bad music on the overhead, not to mention loud announcements and sometimes loud customers make grocery shopping my personal hell. I’m always wiped out and feel lousy (or lousier) afterwards.
Nighttime driving with photophobia? HAHAHAHA…not on my agenda unless it’s an emergency, for a few reasons:
All I see coming at me–no road, no traffic lines; JUST. HEADLIGHTS. BLINDING. ME.
2. “Does that vehicle have double headlights, or am I seeing double again?”
3. HALOS AROUND ANYTHING REFLECTIVE. HALOS AROUND LIGHTS. AND WHATEVER THAT LOVELY PHENOMENON IS IN THE BOTTOM PICTURE.
Sure, they’re pretty. They’re also a huge distraction while driving. Not entirely certain if this is an aura or a photophobia thing, but yeah. The first time I saw halos around reflective stuff, I said to my son, “Look! Pretty!” And nearly drove into a ditch because I was so distracted.
OLYMPUS DIGITAL CAMERA
4. No pic for this one, but:
“Are those colored halogens in my rear view? Or multicolored halos? Or are those police lights?”
(Please tell me I’m not the only who has that happen.)
And for many of us who can’t afford an $8000+ price tag, that’s exactly what we’ll continue doing…and doing…and doing…
I’ve been following the CGRP research and trials with both hope and trepidation–hope because they’re the first drugs developed specifically for migraine prevention and have shown a great deal of promise, and trepidation because the projected price tag is astronomical for the average sufferer.
This article gives a lower projected price than many I’ve seen, but it’s still far beyond reach for many of us.
How long will we have hope extended with one hand and snatched away with the other? Many of us with chronic migraine are disabled and unemployed due to this terrible disease. We can’t afford many CURRENT treatments with a much lower price tag, much less this one.
What good is a highly promising medication if those who need it most can’t afford it?
Most people think of migraine as headaches. But head pain is commonly accompanied by severe, disabling symptoms like nausea, vomiting, dizziness and sensitivity to light, sounds and smells. The disease is far more widespread than realized: About 38 million Americans, or 12% of the population, have them, according to the non-profit Migraine Research Foundation.
But treatment options are limited. Just a handful of drugs were developed specifically for migraine, though drugs for other conditions including blood pressure and epilepsy have been found to work, too. Still, there haven’t been any new drugs in development for some time, experts say.
A promising new group of drugs, named after calcitonin gene-related peptide (CGRP), a neurotransmitter tied to migraine, has changed that. CGRP drugs are being developed both to prevent migraines before they happen, and to stop attacks once they occur.
The former category is closest to being available for patients. About seven million patients would likely get the treatment, estimates Evercore ISI analyst Umer Raffat, with an $8 billion to $10 billion potential market size.
Alder BioPharmaceuticals Inc. ALDR, -0.85% is also developing a preventive CGRP drug, and further research on the drug class is expected at the American Headache Society’s annual meeting, which began Thursday and runs through Sunday.
But price and access remain a persistent question. Projections begin at about $8,500, concerning patients and headache experts alike.
Dr. Lawrence Newman, director of the headache division at NYU Langone Medical Center and immediate past president of the American Headache Society, says that could add on to the “double whammy” of having migraines, which describes the symptoms and stigma patients face.
“I’m concerned that the patient will again be exposed to that double whammy,” he said. “They’re made to suffer because of the disease they have and because the insurance company won’t allow them access to a potentially effective therapy.”
Weather and wine and chocolate, oh MY! Those terrible triggers!
(An important distinction here before we continue: triggers are NOT what “causes” migraine. Migraine is a disease that causes sensitivity to triggers (stimuli). If one does not have migraine disease, triggers don’t affect them in this manner.)
“Our study results show that people with migraine have great difficulty identifying their personal triggers and their suspicions may be overly influenced by beliefs popularized on the internet. Unfortunately, these misperceptions lead to a lower quality of life by people avoiding many things they love but without good scientific reason,” explains Alec Mian, CEO and founder of Curelator Inc.
The first study examined trigger suspicions in users with episodic vs. chronic migraine and revealed an unexpected disconnect between suspicions and scientific reality. Both groups suspected virtually the same set of triggers. However, after using Curelator Headache, which scientifically determines true risk factor associations, significant differences in triggers were revealed between episodic vs. chronic participants.”
The funny thing about this is that it ISN’T a new idea. I’ve been talking about how triggers may not actually be triggers since reading a few articles in this vein a few years ago, and how triggers are often cumulative, so the most recent events or substance that pushes an attack into existence may be the one blamed, when in fact it’s a progression.
“In his clinical practice, he sees many patients whose quality of life suffers as a result of both their migraines and their efforts to avoid triggers that they believe will lead to attacks. In addition to light and exercise, other proposed triggers include stress, emotions, and certain foods.
But there’s little evidence that any of these things really do trigger attacks, says Goadsby. He hopes that, in addition to the current study, there will be much more research on triggers.
“There are tens of millions of people with migraine,” says Goadsby, “and all they have to go on are tales handed down about what triggers them.”
“You eat chocolate and you get a headache. Does that mean chocolate triggers the headache?” Silberstein asks. “What probably happens is the first symptom of your migraine attack is the desire to eat chocolate. Just like when you’re pregnant, you might want pickles or ice cream. That’s one end of the spectrum, where the desire to do something is part of the migraine attack, not the trigger.”
Distinguishing between triggers and symptoms is challenging, not just for those who study migraines but for patients as well. Silberstein says there are some known triggers, such as certain odors, hunger, chemicals in alcohol and hormonal changes linked to menstruation, but that other factors may fall somewhere between an actual trigger and a symptom. How can patients tell? “Everybody with a migraine should try to find out what is triggering their attacks,” Olesen says. “When they have a suspicion, it would be a good idea to try and see if it induces an attack. In most cases, it’s probably not going to be true.”
Both Olesen and Silberstein say there are a number of factors that determine whether these suspected triggers will actually lead to an attack. Patients likely have individual thresholds that vary from day to day and from environment to environment: some days your brain is less vulnerable to certain triggers, while on other days the conditions might be right for a migraine.”
The TIME article prompted me to test some of the things I’d previously thought were my triggers, one of which was pepperoni pizza–one of my all time favorite foods and something that is high on the list of things thought to contain classic triggers (aged cheeses and aged, dried, fermented, or smoked meats).
Guess what I found? It did NOT always set off an attack. The times it seemed to were usually times I was already in danger of one, pointing to the cumulative factor, or that it wasn’t one.
Now, triggers CAN change over time; as my attacks progressed to chronic, so did the things that could set them off. But many of those were environmental or cumulative. Some were unavoidable, like weather–scientists don’t know why weather/barometric pressure are likely to set off attacks for so many of us, but science has shown that it does. Others were fragrances like perfumes or cleaning products (bleach is the number one).
When I became daily chronic, triggers more or less went out the window. Nothing actually set off an attack as mine was 24/7, 365, but some things could certainly worsen my pain/symptomatic level. Weather is still the most reliable one, but fluorescent lighting is up there, along with odors and certain chemicals. Too much exercise can exacerbate it, but carefully paced exercise or exertion may or may not. I seem to have a stunning zero food or drink triggers…and I suspect some of us may have less of them than we think.
One of my friends is entirely triggered by environmental allergies ; she’s literally allergic to the environment.
I know allergens in the environment affect mine adversely.
The takeaway here: triggers may not be what we’ve thought they were, either in what we think they are or in their influence on migraine. This may not change how you see them, but it’s worth following.
On this last day of Mental Health Awareness Month, I’d like to highlight the importance of mental health in conjunction with chronic pain/ illness/migraine.
I can say that having found the migraine community shortly after this young woman’s death, I was profoundly and deeply affected by Melissa’s story.
Having progressed to daily chronic myself a relatively short time before, I was struggling to deal with the pain, the stigma, and still searching for answers that at the time didn’t exist or weren’t widely known.
I approached the 3 year mark of my daily chronic migraine existence with trepidation because of Melissa’s story, wondering what might be the day I gave up hope…and although I passed it with some relief that I hadn’t harmed myself, I WAS haunted by the “It could have been me” thoughts, as I did have frequent thoughts of suicide and even a plan on a few occasions.
I’m glad to say I got help for the crushing depression I felt then; although it’s by no means a cure, it does help me cope exponentially better.
She still is a large reason that I do this.
My others are the my own experiences, my family, and the countless others who are in the trenches fighting this battle at any given time.
Yes, migraine can kill. It kills through depression, though loss of hope, and through suicide.
Yet it still isn’t seen as the monstrous disease that it is.
I want to help change that. For Melissa and for every one of us.
“The migraine community is deeply shaken by this young woman’s suicide. Those who knew her are crushed by the loss of a vibrant, warm-hearted, loving person who was only 22. And I believe that those who didn’t are haunted by the niggling thought, “It could have been me.” Even the chronic migraineurs who haven’t seriously considered suicide know the feeling of not wanting to live like this anymore. It is not that we want to die, but that the daily struggle of chronic migraine feels like it is too much to bear and the light at the end of the tunnel often seems nonexistent.”
(Quote from The Daily Headache)
We’re coming up on one of my favorite months- Migraine and Headache Disorder Awareness Month!
I’ll be sharing LOTS of awareness info intended to reach migraineurs and non migraineurs both, as well as awareness about other headache disorders.
Naturally since chronic migraine is my personal monster, I’ll focus on it, but if you have a headache disorder you’d like featured here or on my Facebook page, please let me know! I don’t want to leave anyone out–I know too well how that feels.
Also, a great all-inclusive page to follow (this month and all the time) is BrainWreck Rebels – they are excellent support and information for anyone with any type of headache disorder.
I truly wish more people understood this about chronic illness:
We are not drug seekers.
We’re not after pain killers–we’re after treatment that will reduce pain.
Many (if not most) of us have a serious love/hate relationship with our medications…even the ones that work for us. Possibly especially the ones that work for us.
The thing is, many of the meds we take have side effects.
I know, everything has a side effect. Something making you feel better is a side effect, if you want to get technical. I’m talking about things that, even as they help us, make us uncomfortable and actually sometimes as unable to function as we were before taking them.
Weight gain. Weight loss (yes, that can be a negative). Loss of sex drive. Hair loss. Stops the attack/pain, but knocks you out/leaves you in a fog. Impairs your mental or cognitive function- memory, ability to concentrate, etc.
And guys, I’m 100% serious when I say sometimes these are only the MILDLY annoying side effects.
I’m not even counting the “oh my god, what is this doing to my body in the long run” concerns. Or the fact that they don’t always work 100% or at all. Or realizing that there is no one magic treatment or doctor that will give us our lives back. Or that many treatments are expensive or limited by insurance.
And I know- you’re thinking if something has an unpleasant side effect, what’s the big deal? Just stop taking it.
And there’s the rub.
Because when you’re sick every day, you learn that you have to weigh the evils sometimes.
“Am I willing to deal with ___ so I can not hurt today?”
“Am I willing to deal with pain, etc., so I don’t have to take this one?”
“Can I function through the day if I don’t take this?”
And the big one: “Is feeling better worth this?”
Sometimes it is…and sometimes it isn’t.
Sometimes I skip meds so I can function, and sometimes I can’t function without them.
I can be both thrilled to have them and loathe them at the same time.
And I’m not alone.
We are legion…and we’re tired of getting the side-eye and judgments that come along with living with disorders that we didn’t ask for.
Why should we be treated as if we’re wrong to want to feel better for a while?
Wouldn’t any of you do the same?
Hard question to answer.
Most of us are still trying to answer it every day.
Being chronically ill doesn’t necessarily make us kinder or more understanding of others, but it can if we let ourselves take that lesson from it.
For that to take root, it has to be cultivated. And cultivated. And cultivated.
How does one cultivate compassion? By first being honest with ourselves….even when it’s not pretty.
1. I sometimes get jealous of my friends.
Healthy ones because they’re healthy, and ones who aren’t healthy that have pain free days because they have pain free days.
2. I feel immediate guilt for thinking they are somehow luckier than me, because logically and emotionally I know better than that.
3. I give myself a mental kick in the butt for such a knee-jerk stupid feeling, because one of the main reasons I advocate for awareness is that I hope it may help others from ending up like me.
4. I try my hardest to never show my friends when I feel this way, but I’m often worried I’ll fail at it.
5. This is a hard thing to admit and I feel like a jerk.
6. This doesn’t mean I’m not happy for them when they share good news or have a good life, and definitely not that I want them to stop sharing either good or bad things with me. I still want to them to not feel guilty about confiding in me.
7. I think many who are chronically ill can relate. And that they hate to be able to relate.
8. I think a lot of us are afraid to admit the less pretty side of what being constantly physically miserable can make us feel.
9. I think we’re afraid of being seen in a negative light, especially since we feel the sting of stigma already.
10. Being honest is important, especially to ourselves.
What do we do with this kind of honesty and self discovery?
We work to counter it.
Sometimes we fail, sometimes we succeed. And whichever it is today, we give ourselves the compassion and the room to be human and fallible.
And then we pass that same compassion and understanding along to others.