I Lost My Light and It Could Have Lost Me Everything

I Lost My Light and It Could Have Lost Me Everything

I Lost My Light and It Could Have Lost Me Everything

Red, puffy eyes. Swollen runny nose. Frustration, anger, grief, and sadness so intertwined that separating the emotions was impossible. 

And the pain; always the pain, unrelenting and never ending, an ache in my head and in my heart that would not go away until I was dead.

Symptoms of chronic daily migraine? Not exactly. But certainly byproducts of it.

Crying wouldn’t make things any better. Aside from the puffy eyes and runny nose, it would cause my migraine pain to skyrocket, and it was already close enough to unbearable. But I couldn’t stop. It was yet another visit with my grandkids postponed because I was in too much misery to get out of bed. Another disappointment both for them and for me. I was racking up an impressive number of those, but the missed time with my family hurt the most because I knew it hurt them, too.

Once, I was that mom who spent a lot of time with her kids, whether we went places and did things together or sat at home and did things together. We didn’t have a lot of money; we usually were struggling to make ends meet. But we had a lot of love and we made time for them.I never wanted my kids to wonder if they mattered to me; I wanted them to know it beyond doubt, and I’m thankful that chronic migraine at least did me the favor of waiting until my kids were mostly adults before becoming chronic. 

I didn’t want to be an absentee grammy, mother, aunt, spouse, daughter, and sister, but migraine doesn’t ask for a schedule. I didn’t want to lose my job or the college degree I’d finally started working for at 41. I didn’t want to be dependent on my boyfriend to support me. I didn’t want to have to fight for disability benefits. But migraine didn’t ask before hijacking my life.

Everyone who lives with migraine (or any chronic illness, for that matter) has a list of the things that have come along with it. Comorbid diseases, higher medical bills, wrangling with insurance companies over treatment, oft-cancelled or rescheduled plans, and doctors who are utterly unsympathetic and/or treat them like drug seekers are some of the unasked for issues we accumulate along with our unasked for disease.

Then there’s the list of things many of us have lost, such as: family/friend relationships, jobs, marriages, the ability to do some of our favorite things and go to some of our favorite places, sometimes the ability to care for ourselves on bad days, time with loved ones…nothing huge, just basically life as we know it. We, too, frequently get to watch it going on for everyone else, but not for us as we are frozen in migraine purgatory. 

Two common comorbidities of chronic migraine are depression and anxiety – possibly the most common; those with chronic migraine have a 30-50% chance of also having depression, and a 50-80% chance of also having anxiety. Many of us have both.

It shouldn’t be so surprising that they so frequently occur alongside chronic migraine – just imagine that your life has been turned completely inside out and upside down and that everything you depended on and knew has suddenly become very skewed, or disappeared, beginning with your health.

Now on top of that, you’re dealing with a host of disabling neurological symptoms, of which pain is only one.

Now on top of THAT, people who have never had a migraine attack (many of whom mean well, I’m sure) are full of advice to “fix” and “cure” those “headaches.”

My particular not-so-favorite advice is to just “accept it and move on.” Acceptance is all well and good, but it isn’t a one-shot deal when you live with a chronic condition, especially one that can surprise you new (and assuredly UNimproved) symptoms. It’s a process that sometimes has to be repeated…again and again and again. And how on earth do you “move on” from something that never goes away and you have to carry with you? Hint – it’s not so easy.

Depression has been a part of my life for so long that I’m really not sure whether its origin is situational or a chemical imbalance. I can’t remember a time without its presence, even during childhood. My childhood was pretty dysfunctional, so I suspect it’s the “why.” But I do know that the transition from occasional episodic migraine attacks to constant 24/7, 365 chronic migraine several years ago has put my generalized anxiety disorder through the roof, and has taken my major depressive disorder from what would have been considered “high-functioning” to a level that is uncontrollable without medication.

What do I consider uncontrollable? Suicidality. 

To be honest, I didn’t even notice how low I was for some time. All I saw was my physical pain, not the mental anguish that had crept into every waking moment along with it. And when I finally did notice, I simply accepted it as part of this “new normal,” which was easy enough considering that nothing about this life is remotely normal. 

Even when I started thinking about dying as an escape from the physical pain, I wasn’t alarmed…which should have been alarming in itself. But deep in the rabbit hole of depression, there was nothing but apathy. It’s incredibly dark in the rabbit hole. So dark that sometimes you even forget that light ever existed. You stop looking for light at all.

All I saw was the rest of my life in hellish misery stretching out ahead of me. All I saw was the burden I was to my family who had to see me suffer. All I saw was all that I had lost and all the things I could no longer do or be for those I love. All I saw was their pain ending when I was gone.

I lost the ability to find a reason to continue living, yet I did so out of a sense of obligation to those who loved me. 

But eventually, even that wasn’t enough. I was becoming cavalier about the thought of being in a fatal car crash, and I drove more recklessly than I used to, courting disaster almost eagerly. I started thinking about driving off a bridge every time I crossed it. 

I lost my light…and it could have lost me everything that I still had and still loved. 

Apparently, my depression was obvious. I hadn’t tried to hide it, but I hadn’t brought it up, either. My  GP suggested an antidepressant to try as a migraine preventive. If we got lucky, it might help my depression as well, he added. 

It didn’t help my chronic migraine at all, but it DID help the depression. And as I came out of the rabbit hole, I was horrified to finally see how lost in the dark I’d been. I won’t say I don’t still struggle. I definitely do. I’ve had a few downward spirals since, a severe one recently, despite the medication and despite now being proactive about guarding my mental health as much as I can. 

Medication for depression is no magic fix, any more than migraine treatment is. And this chronic migraine life is hard. Even with treatment, many are greatly limited by this disease – what is considered “effective” treatment by medical research standards is not necessarily synonymous with major improvement. It can be marginal improvement that leaves us still unable to participate in “normal” life. It’s entirely unpredictable how anyone will respond to any treatment; some may improve dramatically where another does not. So much about migraine treatment is still trial and error for each of us, despite the recent strides in research that have brought treatments specifically developed for migraine. The uncertainty is hard to live with. It makes it hard to keep hope alive, particularly in this anti-opioid era that is leaving so many with unchecked and unbearable pain.

But I’m not struggling alone any more, difficult or not. 

There are many of us going through the same struggle. According to a migravent.com article, the suicide rate in migraine patients is higher than that in the general population, and people who have the most severe and frequent migraine attacks are more likely to contemplate suicide. Also, some medications prescribed as preventives have been associated with high suicidal tendencies. And ironically, antidepressants – often prescribed as preventives – can sometimes worsen suicidal ideation in those with a history of depression and suicidal thoughts and/or behaviors. 

Yet our risk is great enough that we should not try to handle serious depression completely alone…yet too many of us do not seek treatment, whether medication, therapy, or both, often due to stigma and because it’s all too common for healthcare professionals to not take our physical illness seriously when we also have a mental illness diagnosis. But I would ask that if you are struggling, please, please try to reach out. 

Depression is a liar. It will tell you others are better off without you. They aren’t. It will tell you no one cares. They do. It will tell you nothing will ever get better; that this is the best there is. It may not be. 

We lose too many in the migraine community, and every single one of them matters. Depression will tell you that you don’t…but you DO. Please remember that, and please remember that you don’t have to go through this battle alone.

National Suicide Prevention Lifeline & Online Emotional Support

If you feel you are in crisis, please call the National Suicide Prevention Lifeline. It is a free, 24-hour hotline, at 1.800.273.TALK (8255). Your call will be connected to the crisis center nearest to you. If you are in an emergency, call 911 or go to your nearest emergency room. Counseling On Demand does not offer crisis counseling or emergency services.

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Selena Marie Wilson is an advocate, blogger, poet, artist, mom of 4 and Grammy of 6 awesome grandspawns and 2 generations of grandkittens, Crazy Cat Lady, Chronic Selfie Taker who lives with Chronic Daily Migraine, Depression, Anxiety, Panic Attacks, and Tardive Dyskenesia.

Read more of her posts on her blog at https://downtherabbithole397.wordpress.com

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