“If I believed in miracles, this would qualify as one.” I wrote that last week in reference to how much better I felt on Tolerex. It’s been bugging me ever since.
A miracle arrives out of the blue and is conferred by an outside force, some otherworldly or supernatural being. My improvement is not a miracle. It is a direct result of what *I* did, not the whimsy of some outside agent.
I’m the one who pored over articles from medical journals. I’m the one who has sifted through the highly unreliable information on histamine that’s available online, trying to differentiate fact from anecdote. I’m the one who created a spreadsheet and has logged every food I’ve tested. I’m the one who chose to give up real food to see if that would make me feel better. I. Did. This.
You know that I’m far more prone to self-criticism than self-congratulations, that I’ve adopted the criticism of the people who doubt the severity of my illness and my efforts to overcome it. Not this time.
It took going to extreme measures, but I can finally see how hard I’ve fought (and continue fighting) to try to reduce my migraine frequency and severity. Only a desperate, dedicated person would give up food (FOOD!) in an attempt to feel better.
My improvement is no miracle. It’s the result of not just a couple months or years of effort, but of 12 years of slogging through the days, attempting one unsuccessful treatment after another, and picking myself up and trying yet another avenue again to find relief.
So, yeah, I’m proud of myself. I think I deserve to be. I *finally* think I deserve to applaud my tremendous effort. This long, painful journey is nowhere close to over. But it’s far easier to move forward now that I can see myself as the courageous warrior my loved ones have been telling me I am.
The outside world either thinks writing is my job or that I don’t work at all. In truth, I work constantly. When I’m lucky, that work is writing; most of the time, that work is chronic migraine. I never leave work. Never. I never have downtime and I don’t get to leave my work at the office after a long day. My work wakes me up in the night and I check on it first thing in the morning. I imagine it’s not unlike the tireless, thankless work of a stay-at-home mom, without the rewards of giggles and kisses from an adorable little one.
When I was at my sickest, I expended all my physical and mental energy just to keep myself going. It may have looked like I was lying in bed, but I was giving it my all just to ensure I’d wake up the following morning. That may sound melodramatic to some, but any migraineur who can imagine being chronic will understand it’s not.
Now that I’m doing a little better, I work constantly to try to maintain or increase the improvement, monitoring my diet like a hawk, building up my physical strength, avoiding triggers, researching potential comorbidities, considering other treatments, attempting to maintain balance so I don’t push myself into a severe attack, working through the deep well of grief wrought by spending much of my 20s and 30s disabled.
I keep talking about how much better I feel these days. At my current peak, I function at 70% physical or mental capacity (not both) for a couple hours in a day. Most days I’m thrilled with a few hours at 50%. A so-called good day means I don’t have to focus all of my attention on my health and can instead tend to normal things of life, like cooking, doing laundry, paying bills. I’m tremendously grateful to have this much ability, while simultaneously angry that I work so hard for only partial functionality.
I may not have the money, social stature, or outwardly visible accomplishments associated with hard work, but my effort is commensurate with that of a self-made multibillionaire.
Like so often happens with love at first sight, the spark I initially felt with Ritalin has faded. That first week, I had energy and a clear head even when I had a migraine. Week two began with a five-day migraine full of fatigue and head fog. Since that attack let up, I’ve had intermittent bursts of vigor and mental wherewithal, but also daily migraine attacks, during which I’m back to physical and mental blah.
Despite my freakout, I don’t think Ritalin is directly making the migraines worse. I’m pretty sure the five-day migraine was the result of unwittingly (or half-wittingly) reintroducing salicylates to my body. Since then, the weather has been erratic. My sleep is off, too, which could definitely be a Ritalin side effect.
On top of those issues, whenever one migraine dissipates, I have enough oomph to do something that triggers another migraine. That energy is a positive effect of the Ritalin that I have yet to figure out how to manage. I unintentionally over-exert during yoga or on the treadmill as I try to find the balance point of good exercise without triggering a migraine. Or I go to a place that I don’t know will be perfumed. Or I have sex (damn those orgasm-triggered migraines!).
Could it be that if I went two days in a row without a migraine, the next attack would be less debilitating? As if I need to recharge between migraines to get back that lovin’ feeling even when I have an attack. I also wonder if my body is acclimating to the medication and it is becoming less effective.
Ever a romantic, I still believe Ritalin and I can work through these difficulties and create a loving, supportive long-term relationship. Maybe we’re not meant to see each other every day, but would be better off having fun together a few times a week. I’m sticking with daily for now as I try to manage all the other triggers. That’s always hard work, but not as exhausting as it was before Ritalin came into the picture. Every relationship has its tradeoffs, but the good ones are worth the effort.
There’s a common wisdom that illness can be overcome through hard work. Work is definitely involved, but effort isn’t the only factor. I know this, just as I know I’m not lazy or faking it. I also know I work really hard to improve my health. Still there’s a nagging thought: I must not be getting better because I’m not dedicated enough.
To reassure myself, I looked at the review of my 2007 treatments and treatments I planned for 2008. The lists are so long I tire remembering all appointments I’ve been to. This should be proof that I’m trying to get better. Too bad my inner perfectionist tells me I should be able to do more, no matter what the project.
During my (mild) meltdown last night, Hart asked how he could help. I asked him to tell me that I do work hard at getting better. He looked so pained when he told me I work as hard as I possibly can. Having him say that was so reassuring. If he thinks I’m trying hard enough, I must be.
I wish I didn’t need outside confirmation for things like this. Ha! That sentence makes me laugh. Of course I’m too stubborn and independent to ask for help. Of course I want to do it all on my own. I simply can’t — none of us can. Maybe I’ll remember that for a few days at least.
And maybe I’ll remember I’m working my butt off to get better.