Over the past few years, my physical health has significantly declined. I used to love being able to sit outside on my patio and read a book with a cup of tea on a cool Autumn day. But even something so simplistic as that is now a major physical burden to me.
Because of migraine disease, I haven’t been able to finish a book in nearly 3 years. Most days I can’t leave my house, even to do something like sit on my porch. And on more days than I care to admit, I can’t leave my bed. I often go weeks without eating more than one or two slices of toast a day. I’ve even ended up in the hospital quite a few times with dehydration because I am unable to walk over to the refrigerator and get a glass of water.
What’s the worst part? None of my doctors believe me.
I suffer from Refractory Migraines, Degenerative Disc Disease, and Ehlers-Danlos Syndrome. Here in The States, there are only two medications that are prescribed to abort a migraine. These medications fall into a class called Triptans or Barbiturates. Being that I have tried multiple Triptans and was allergic to all three, the barbiturate medication, commonly known as Fioricet, is my only option. The problem? Fioricet is a controlled substance and in the past few years the DEA has cracked down on such medications causing those of us in the chronic pain community to suffer more than ever.
There is another class of medications that help me and many others with migraines and those are called opioids. Now you will probably think I am insane for saying this but I am lucky that I have Degenerative Disc Disease. The reason for that is that there are findings on my MRI’s that can show doctors that I truly am in pain, allowing me to get one of the lowest doses of opioid medication prescribed.
My Ehlers-Danlos, which for me is more painful, mostly causes muscular pain due to it being a connective tissue disorder. You won’t see traces of this disease in my spine where my MRIs are often ordered. And if the doctors don’t see it, they don’t believe you’re in pain. You also can’t map or see a migraine the way you can a seizure.
A few years ago if your pain was worsening over time, your doctor would increase your medication. It seems like a simple enough process. But now, everyone is suffering. Including me.
Getting my medication increased is now impossible and I suffer in extreme pain every day of my life. And I’m not alone. Millions of us went to college to get careers that we’ve had to stop because of chronic pain. Medications that are under attack can help someone like me who recently had to sell her home thanks to her extreme chronic pain making it impossible for me to work. And don’t even get me started on the difficulties of being awarded disability.
People with families lose their jobs because those of us with migraines take too many sick days. It doesn’t matter if you’re a single mother or father, or a young adult just getting out of graduate school. Physicians do not want to prescribe the only medications that will help millions of us. And we say “the only” because we have tried absolutely everything else. I have been on everything from Gabapentin to Diclofenac. I even developed a bleeding stomach ulcer a few years back from taking NSAIDs every day. But I am still told that taking them is safer than being on my Percocet.
What proves this is a political agenda, and not one rooted in genuine concern for the people is that alcohol is available nearly everywhere. Something that has no medicinal purposes, and is not regulated in any way apart from the age you can purchase it. I can walk into my local Walmart right now and purchase a bottle of wine.
According to the National Institute on Alcohol Abuse and Alcoholism, “In 2014, the World Health Organization reported that alcohol contributed to more than 200 diseases and injury-related health conditions, most notably DSM–IV alcohol dependence, liver cirrhosis, cancers, and injuries. In 2012, 5.1 per cent of the burden of disease and injury worldwide (139 million disability-adjusted life-years) was attributable to alcohol consumption.”
Yet you can buy alcohol every single day for the rest of your life if you so choose.
And that is the important word here, choice. Because I am not saying alcohol should be illegal at all. Patients should have just as much of a choice in the medication they take as their doctors do. When they talk about side effects and long-term effects, it should be our choice if we decide to endure them. Because for most of us, the side effects are nothing compared to what we deal with from our illnesses. And what is life without being able to ever leave your house? There is no side effect worse than the blinding pain of a migraine, or living in isolation forever, at least not for me. And ultimately, that should be my decision.