There is none. There is no silver lining, no greater lesson to be learned, no “reason this all happened.” There may be an underlying cause to be found, a triggering event that gets identified, an explanation that ties everything together - but there is no metaphysical point that this pain had to happen.
107 of the last 123 days – including today – have been “headache days.” My chronic migraine attacks started a few months prior, and starting on November 28, I had a new type of headache (in addition to regular migraine attacks). A migraine attack would start and then end. But this new headache (maybe also migraine, but a different type of attack? I don’t know) – a sharp, hot, burning pain – has been relentless.
On New Year’s Eve, my head didn’t hurt but my neck was killing me. A few weeks later - after two failed rounds of steroids and three days of an anti-convulsant that did not help – I got a nerve block. And very shortly after that, I felt better – so much better, in fact, and without any side effects save for some numbness (which I’d take over the intractable pain any day), that I was beyond disappointed I’d had to wait so long for that kind of relief. Unfortunately, the pain slowly began to climb back up, albeit not quite getting to the constant level it was pre-nerve block. A few weeks after that, I had my first physical therapy session and learned some stretches for my neck. I felt some relief almost instantly; each time I do the stretches, my neck relaxes and so does the pain in my head. This is encouraging – but again, it makes me so mad that I had to wait so long to feel this relief, that nobody thought of it any sooner.
Feeling numb post nerve-block
When we read the story of someone’s pain – whether acute or chronic, whether due to an accident, injury, or illness – we want there to be a happy ending. We want to keep reading and find out that they get better – that they find out what caused the pain in the first place and they are able to be cured, or at the very least, manage it so well that it causes them no trouble, save for perhaps daily medications. With more dramatic pain – pain that seems to come out of nowhere, pain that is life altering, pain that impacts your ability to function, pain that doesn’t end – we want there to be a silver lining. There should be a lesson learned from all of this, they should be grateful, in a way, to go through all this pain because look at what they learned because of it! Look at how much better their life is now! Look at all of the healthcare they received!
This never-ending headache has forced me to advocate for myself with medical professions, to use my best written and verbal communication skills. Sometimes doctors still won’t listen, but in some cases, that self-advocacy has worked and gotten me testing, appointments, a new method of relief to try (I’m writing this six hours after my second nerve block). But using precious spoons to come up with a perfectly-worded message to send to my provider on MyChart, to debate whether a MyChart message or voicemail would be more effective, to determine which pieces of information are necessary to bring up at my appointment – that only leaves me with even fewer spoons to actually live my life.
I am not brave or a martyr for continuing to work, do the laundry, cook and wash dishes. I have no choice. I have to work to pay the bills, and while sometimes chores can be put off for a day or two or takeout can be ordered so I can avoid cooking – things still have to get done, and there is no one here to do it for me. I am not complaining; I am stating the reality I am in. This pain has forced me to make decisions about prioritizing and learn what actually matters – it turns out I don’t really care if the sink is full of dishes for a whole day, but I will be devastated if I miss a FaceTime catchup session with a friend. Gasp! But you socialize – you see friends, go out to dinner, have people over to your apartment! You can’t possibly be in that much pain! Yes – I have seen friends, and I have taken an Uber both ways instead of walking less than 10 minutes to and from the train because that walk would eat up the very last of my spoons – and only make my pain worse. And I have cancelled, rescheduled, or rearranged plans more times than I can count. I’ve missed out on concerts I’d been looking forward to for months with no time left to sell a ticket and get my money back.
I am long done trying to be positive for the sake of other people’s comfort. Do I have optimism and hope that thing will get better, that my daily pain will go down, that I will find effective ways to manage my pain and be able to get closer to my previous activity level? Cautiously, yes – each time I do my neck exercises, each day I take Nurtec, I am hopeful that I am a little closer to at least getting back to “baseline” – to how I was before November 28. But some days are still hard. I’ll lay down on the couch and realize my water glass is nearly empty, but my muscles are tired and my head hurts and I’ve just gotten comfortable with heat/ice. Do I get up now and risk making the pain worse? No, I lie here and wait until I’m thirsty enough that it’s worth moving. It’s getting late and my last dose of whatever pain reliever has worn off, my heating pad is back to room temperature, and I delay bedtime because of the pain – hoping that if I wait another 10, 20, 30 minutes or more it’ll hurt less and I will fall asleep easier.
Would it have gone away sooner if I had rested more? Taken off work even when I had important projects? Gone to the ER? Been willing to continue taking a medicine that gave me awful side effects (well that’s just part of the deal, don’t you know – some of these medicines have side effects and you should be grateful there is any medication available for you at all!)? Fought even harder for myself, done an extra yoga class, skipped a yoga class, scheduled extra sessions with my therapist, avoided all caffeine and artificial sweeteners?
I’ve decided that I am done with wondering all of that. Pain drains you of your energy. To simply exist in pain is exhausting – not to mention having to advocate for yourself to healthcare professionals, to continue trying to improve other things in your life, to answer endless questions from well-meaning but clueless folks wanting to know have you tried this? What about that? You should avoid this, stop that, it can cause a migraine attack.
I have tried a lot of those things, the things people always like to suggest. Like… a lot of them. And at a certain point hearing more “suggestions” just feels exhausting when all I want to hear is that there is no point to this pain. That I don’t deserve this, that they believe me and believe my suffering, and that they hope things start to improve but understand it could take a really long time.
