What do you do with unsolicited health advice? The way I see it, I can either gracefully accept it, politely decline it, counter the advice with education, or tear the giver apart in frustration. I completely understand the urge to give in to the latter. After all, even well-meaning advice is often base in ignorance.Learn More
Inspired by a post from Kerrie Smyres on Migraine.com, I began rating migraines differently, using a “red/yellow/green light” system to track the quality of my life each day. After about a week, I noticed something interesting. I don’t have “green light” days very often. “Red light” days are pretty rare, too. Most days are “yellow”. But even then, there is a wide variation in my functioning. I need a better system.
Here are 2 examples of “yellow light” days.
Example #1 -This is a “no migraine or cluster headache” day. I’m not having attacks, but I am still severely limited.
I wake up around 10:00 a.m. feeling stiff and sore. It’s hard to get moving. Slowly I manage to prepare a simple breakfast, take my meds, and try to relax with a heating pad on my back while I watch some TV for an hour or so. I get a “good morning” text from my husband and a gentle reminder to make a few important phone calls. My head seems to be cooperating at the moment so I make the calls and try to relax. By noon I am able to move a little better, so I take my breakfast dishes to the sink and slowly load the dishwasher with last night’s dirty dishes. That simple chore sends my back into a burning flame. I grip the rails as I climb the stairs to the office to look for my muscle stim. It takes me awhile to get the pads correctly placed on the right muscle. I turn it on and surf the Internet while I wait for relief. An hour later I can finally move again. I check the time — it’s already past 2:00. Getting down the stairs is a bit easier, so I grab some leftovers for lunch. Before long my son is home from school. We spend some time chatting about his day before his therapist arrives. After an hour of therapy, it’s almost time for my husband to get home. He sends a text letting me know he’s almost home. A feeling of dread comes over me as I realize there is nothing planned for dinner. I know my husband will ask and once again I will have to tell him “no”. Why can’t I get a handle on something as simple as taking out food for a meal? Together we will cobble together something edible and crash. As tired and sore as I am, I cannot fall asleep. I stare at the TV or computer for hours knowing that if I go to bed too soon I will spend the night staring at the ceiling. I wait patiently for those first signs of fatigue. They finally come long after midnight as I slip quietly into bed, trying not to wake my sleeping husband.
Example #2 – This is a “migraine” day. I spend the day coping with prodrome symptoms, trying to carefully accomplish the tasks of the day before the “real thing” finally hits.
I wake at 7:30 and check in with my son before he leaves for school. I eat a decent breakfast, take my meds and load the dishwasher. There is only a faint twinge of pain in my back. Otherwise, my first impression is that this is likely to be a “green light” day. My heart fills with hope as I eagerly anticipate the enjoyment I will get from a productive day. I check email, make a few calls, and touch base with my husband via text. Inspiration strikes and I churn out 3 blog posts in a single morning. Now my adrenaline is pumping with excitement as I prepare to run a few errands. It feels so good to move about unhindered by pain! Just before I walk out the door, I feel that familiar warmth in my eye that usually signals a coming cluster attack. It’s not too serious, so I double check my purse to make sure I’m stocked with meds and comfort measures just in case. I take a moment to fill a water bottle and grab my sunglasses. Still feeling good, I take off. The radio irritates my sensitive nerves, so I turn it off. The sun is bright and my neck is getting stiff. Instead of progressing into a cluster attack, that ache burrows into the left side of my head and begins to throb ever so faintly. I think I can make it through my errands before the worst of it hits, so I carry on. The lights in the store are just a little too harsh so I leave my sunglasses on. Pharmacy, grocery store, back home, take kiddo to work…oops…waited to long. Now the monster is roaring. I pull into the driveway just after my husband gets home from work. He is flustered and needs some help. My head clears just a bit and I’m able to help him find whatever is the lost object of the day. Still, he wants to chat. His voice booms, rattling the foundations of my brain. I stop him and explain the migraine. Disappointed, he quiets down and gives me space to find my meds and an ice pack. The rest of the evening is spent in subdued quiet. Thank God there are still fresh leftovers or we’d all eat PB&J tonight.
It’s strange. I actually got more accomplished on the migraine day than on the back pain day. It seems like every day’s a “yellow light”. I’m always tapping the breaks, checking my mirrors, and preparing for a storm.Learn More
I’m bound to get some blow-back just from the title of this article. So let’s start by acknowledging the truth. There is a lot of suffering in this world. Horrible, unthinkable things happen every day to people just like you and me.
For the sake of this article, let’s follow that up with a few vocabulary words. Language is meaningless if we don’t understand one another. Sharing the same definition for a word can be the difference between war and peace.
Feelings of despair, helplessness, hopelessness, etc. These emotions drag us down and often occur when we perceive that we have been abandoned — either for real or imagined. We want to give up. We look for someone to rescue us.
A set of behavior and states of mind that focus on preparation for problems and work to discover ways to deal with circumstances beyond one’s control. This is not an emotion, but a mindset. Coping is learning what to expect and how to deal with it.
Suffering = emotions
Coping = thoughts, behaviors
All migraineurs have experienced suffering, but not all experience coping. If you’ve never been given the tools to cope with the uncontrollable, then you will experience suffering. Victims experience suffering. In the middle of an uncontrolled migraine, unable to access effective treatments, and surrounded by people who don’t understand, anyone experiences suffering and feels like a victim. A victim is desperate to be rescue, delivered from her suffering. A victim might say, “You just don’t understand what it’s like. I’m in agony here,” and she would be right.
Now here comes the part where I’m likely to make a few enemies.
Do you realize that being a victim is a choice?
I can hear the protests now…
I can’t find a good doctor.
I don’t have health insurance.
I can’t afford my medication.
Nothing is working.
My doctors gave up on me.
All of that is true. I have made each of those statements many times. The truth of the problem isn’t an excuse to wallow in suffering as a victim. You do have an option. Every circumstance, no matter how terrible, gives us the opportunity to choose. There are countless stories of people who experienced horrible situations and refused to become victims. They took charge of what they could, no matter how dire the circumstances. Will we be victims or will we learn to cope?
Let’s face it. Migraines will happen. We all have a choice, even when the attack is so bad that we can’t lift our head off the pillow. We can choose to suffer or we can choose to cope. It may not change the pain or the duration of an attack, but it will change how we see ourselves.
The next time you have an attack, ask yourself, “What can I do?” Resist the urge to scream, “NOTHING!” and just think. Take a deep breath and think for a moment. Even if all you can do is lay there and breathe, you do have a choice to hold your breath, take deep breaths, hyperventilate, breathe through your nose or through your mouth. Are you understanding this? The way you breath can reduce or worsen your pain. Notice what impact your choices have on your pain. Pay attention to the power you have. There is strength there.
Breathing isn’t your only option. It’s just an example of what you can do when you think you are a helpless victim.
Before you close that window or click the Back button in disgust, thinking I’ve lost my mind, remember this: I’m a migraineur, too. I’ve been broke, uninsured, abandoned by family, friends, and doctors. I know the desperation this disease can cause. I’m not trying to tell you I’ve always been able to resist the urge to choose to be a vicitm. All I’m trying to share is that we all have a choice. We have more power within us than we realize. When we take that small step to refuse to be a victim, we find our power.
Migraineurs are some of the most powerful, resilient people I know. If you haven’t found your power yet, reach out to those who have. Refuse to be a victim. Suffering IS a choice!Learn More
I have multiple chronic illnesses. Cures are not expected in my lifetime. I still have hope that my doctors and I can find ways to better manage the symptoms. Nevertheless, we still expect that I will always have to make accommodations to minimize the impact of these diseases on my daily life. Even on a good day when my symptoms are not apparent I make a thousand tiny adjustments to insure that good day continues for one more day. I make choices and do things that healthy people would never consider. My health cannot afford the effects of a carefree life. Spontaneity is a risk I simply cannot take.
I’ve had to make adjustments in my behavior and my expectations. Frankly, I’m still adjusting. My therapist tells me I am grieving and need to allow the process to take its course. If I were the therapist, I’d say the same thing. Thanks to her “homework”, I am finally able to write again. It doesn’t come as naturally as I remember, but maybe I’m just kidding myself. When I think about the past I tend to focus those brief moments in time when I was symptom-free. They seem longer in my memory. The truth is that those were pinnacle moments in a life that was otherwise dominated by pain or attempts to avoid pain.
You see, disability didn’t happen suddenly. It has been a slow, creeping process. I’ve spent most of my life trying to “beat this” in pursuit of a “normal” life. I have scratched, scrambled, and fought my way through life, trying to pretend that pain was not in control. The reality is that pain has been a constant unwelcome guest in my life for 38 years. I don’t think it’s really been a “guest” for decades. Pain is a part of my family. The sooner I accept that and embrace the gifts it brings, the sooner I will feel “whole”. It’s long past time for me to surrender the fight and stop seeing pain as my enemy.
This is no easy process. We are conditioned by society that pain is something we should try to get rid of. Billions in profits are made each year from the sale of pain relievers. Please don’t misunderstand me. Pain is not an enjoyable experience. If I was given the choice to live without pain, I would certainly take up the offer. But I don’t get a choice. In fact, I get an extra helping of the most insidious kind of pain…the kind for which no cause can be found. All the tests and scans show a “perfectly normal” body. No one can point to anything in my body that explains my pain. No medicine will cure it. No surgery will reverse it. It is incurable.
You may think it sounds like I am giving up. That’s not the case at all. Making peace with pain is not the same thing as surrendering to a life of misery. I don’t intend to stop taking medication or cancel my doctor’s appointments. I don’t plan to intentionally expose myself to triggers I know will set off attacks. But when pain comes knocking at my door, I will invite it in and accept its presence as a reality in my life. Marsha Linehan, creator of Dialectical Behavior Therapy calls this Radical Acceptance. It’s the concept that right here, right now, everything is as it should be. Pain is pain — there is no assessment of it’s morality. I do not view it as either good or bad, welcome or unwelcome. It just is what it is.Learn More
How many of us have said these statements either in our heads or out loud to a trusted loved one? Were we thinking about suicide when we said it? Maybe. Maybe not.
“I can’t take this anymore!”
“I give up!”
“I just want to quit!”
So how can you know? Isn’t it better to “be safe than sorry”?
Many of us remember the day last June when we lost a dear friend to suicide. She did post a statement similar to the ones above just hours before her death. Concerned people jumped on board to encourage her not to give up. In the end, our “help” did not matter. We are still grieving her loss.
I can tell you countless stories of similar posts where quick action stopped a tragedy. I can also tell you that posting encouraging words were not the actions that saved a life. What it took were people who knew how to get the right kind of help to the person in suicidal crisis.
For every genuine cry for help there are dozens of people who use these statements to express their frustration at a health care system that provides meager help for their suffering. Many times these statements are nothing more than the exasperated words of a patient who does not know what to do next — not a suicidal threat.
That doesn’t mean we don’t take these type of posts seriously.
The important thing to remember is to stay calm. If we over-react to every frustrated patient who is sick and tired of stupid doctors then we risk alienating the very people we are trying to help. It is also important to know your own limits. If you are not qualified to assess the severity of an apparent suicidal threat, then don’t even try. That doesn’t mean you can’t help.
Here is what you can do:
Don’t assume that every expression of frustration is a suicidal threat. It is probably still a cry for help, so write back asking for clarification. Find out what it is that has the poster ready to “throw in the towel”. In my experience, I have been “ready to give up” many times, but my expression was no a suicidal threat. My “giving up” usually meant I was tired of doctors not helping me and I wanted to fire them but I didn’t have any other alternatives. Validate their frustration by acknowledging their right to be pissed off. Sometimes we all go on “we hate doctors” rants. The point is to have a conversation with the poster rather than flame them with “don’t give up” replies. Frankly, when I have been at this point, what I needed was understanding and validation, not to be surrounded by people who were unnecessarily panicked on my behalf. It is certainly okay to ask the person what it means to “give up” or directly ask if they intended the make a suicidal threat. This will not make them more likely to complete suicide!
So what if someone posts and actual suicidal threat, using more specific statements, like “Goodbye world, I’m moving on.” or worse yet, “I’m going to kill myself”? That’s reason for concern and there are steps you can take. Someone who is expressing suicidal threat needs the support of trained mental health professionals. In a crisis, the best way to get this help is through emergency services. It can be a daunting challenge to figure out how to get this help when you might not even know the person’s real name. When all you have is a user ID and an avatar how in the world will you get paramedics to the person in time?
If I know the person outside of social networks (i.e. He or she is a real live friend) then I will try to reach them directly. If I can’t then I will call emergency services in their hometown and request a “welfare check” to make sure my friend is okay. If I don’t have a relationship with the poster, I will still reply to the post with something like this:
I’m so sorry you are feeling this way and care about your safety. Please know that there is help available. Take a minute to visit http://www.suicidepreventionlifeline.org or call 1-800-273-8255 and talk to someone then post back and let me know how you are doing.
Then I will follow the reporting procedures for that particular social networking site. Each one has a policy for reporting, so it’s important to have those links available in case of such an emergency. I have listed as many as I can find below for handy reference. Take some time to visit each one and bookmark the link so you are prepared if anything happens in the future.
Not all sites have specific reporting procedures for a suicidal threat. Facebook and Twitter do. The rest have generic reporting forms you can use. Even if you don’t know the person’s real name or where they live, by reporting what you do know, then the company who sponsors the site can locate the user and report the threat to local emergency services.
Knowledge is power, ladies and gentlemen. Knowing what to do in an emergency is half the battle.
National Suicide Prevention Hotline
Suicide Prevention Resource Center – Guide to suicide threats on social networking sites
Letting Go – Nice blog with good resources
Another psychologist’s point of view
A beautiful description of this issue from an amazing friend, Alejandra Cavanillas.
This post is dedicated to the thousands of migraineurs who care enough to respond when one of our own is at the end of his or her rope.
Disclaimer: A suicidal threat is a medical emergency that should be addressed by trained health care professionals. Please do not try to “talk someone down” from such a threat without the proper training or in an inappropriate location (i.e. online). Simply refer them to the appropriate help listed above or call 911.Learn More
It started with mild feelings of uneasiness that quickly grew into near constant anxiety and paranoia. I was irritable and short-tempered, easily taking offense, and quick to get angry. I’m no stranger to managing emotions. I make my living helping other people identify and manage their own. I knew exactly what I was experiencing and thought I knew how to manage it. But this was more than just stress or skepticism. Something wasn’t right and I needed to get help soon.Learn More
In addition to unrelenting, excruciating pain, chronic migraines bring out a lot of emotions…worry, anxiety, fear, terror, disappointment, sadness, depression, embarrassment, humiliation, shame, irritation, annoyance…but nothing has more potential than anger.
Anger has energy behind it. It drives us to take action. Sometimes it drives us to lash out at doctors, insurance companies, bosses, co-workers, friends, family, and even perfect strangers. Even darker is anger’s ability to drive us to turn inward in self-reproach, self-blame, and self-sabotage. It is a primal emotion that can short-circuit our ability to think rationally and lose control of ourselves.
Would you be surprised to know that there is absolutely nothing wrong with anger? It is no more evil than any other powerful weapon. That weapon just sits there, completely benign, until someone points it at a target and pulls the trigger. Whether by careless, undisciplined reflex or by conscious, deliberate action its destructive potential can be unleashed. It takes some practice to ensure that its payload is delivered to precisely the right target at the correct time (and avoid hitting innocent bystanders)
So how can a migraineur effectively use anger in the fight against Migraines? It starts with identifying the original target of our anger. I don’t know what that might be for you, but for me it’s the disease itself. Migraine has robbed me of so many good things…friendships, jobs, money, dignity…the list could go on for a very long time. At times, I’ve experienced a sort of “Stockholm syndrome” in which I identify with and protect Migraine. During these times I have unconsciously sabotaged the very things that could fight (and possibly) destroy it. I am angry that Migraine put me in that position. It has really “messed with my head”, getting me to think all kinds of untrue things about myself and others. In dark times, it will say to me, “You’re never going to get any better. You might as well give up now.” It is my mortal enemy. It has tortured me both physically and emotionally. It has driven away loved ones. It has engaged in a campaign of misinformation and psychological warfare to turn potential allies into enemies.
As I describe its crimes, I am reminded that I am in a war. Anger is my weapon and my back-up generator. It fuels my strength when Migraine syphons off my energy reserves. I have to be smarter, faster, stronger than it. The most dangerous person in the world is one with nothing to lose. When it comes to Migraines, that’s me. If I surrender, it will destroy my life. It already consumes much of my time, energy, resources, and finances whether I fight or surrender. I prefer to fight.
The problem is that sometimes I’ve forgotten who the enemy is. I mistake “friendly forces” for “enemies” and lob bombs at the wrong targets. Perhaps you’ve made the same mistake a time or two? It’s easy to do. Migraine plays tricks on us, makes us “see” things that aren’t really there. An effective warfare strategy is to fool your enemy into destroying it’s own forces. Migraine is very skilled at this tactic. It’s also skilled at brainwashing innocent people into believing false information about it. They can become casualties of our attacks if we are not careful. We can mistake them for enemies when they are really victims of Migraine’s crimes as well.
But we have some pretty impressive strategies, too. Lucky for us Migraine can’t read, write, speak, or see. We can launch our own counter-intelligence to destroy its propaganda. We can covertly reach out to potential allies who have their own powerful weapons. Remember, this is our “homeland”. Migraine is the invader. We know “the lay of the land” and our very survival depends on success. We’ve lost too many valuable soldiers already. Don’t be one of them. Stay angry and keep it trained on the right target. Don’t fire until you see the “whites of its eyes”.Learn More