Not 'just a headache'
Heads up, this is a frighteningly personal reflection. Unlike Lily Allen, there's no hiding behind autofiction (still love her latest album, you go girl). But onwards to a new year and hopefully getting this down in text will help me shed some of the heaviness. Grab a cuppa and join me, but please skip it if reading about illness isn’t your current cup of tea.
I’ve been on a bit of journey the last few months in relation to my health. And I say that as someone who low key hates the term ‘journey’, which in speech I imagine it being said with vocal fry. As someone for whom making an illness or diagnosis my entire personality doesn't work (all the love to those that do get something from that, it's just not for me). Rudderless, mostly alone and crossing that sacred delineation of doctor and patient. Mostly is doing a bit of heavy lifting as I have really had it affirmed how deeply people around me care for me and how lucky I am.
I’ve been struggling for at least a year with the relentless toll that episodic migraine attacks have been having on my very being. I’ve had them in this form for about five years. Before that, a solid ten years of aura without migraine (pulsating light show, no headache). That has transformed to now come with headache and a host of other debilitating symptoms. But insidiously, with no real time taken to stop and really examine or notice the effect. And it’s not really a visible illness. I’m fine in between attacks. But constantly screening for symptoms (‘could this be migraine’), taking rescue meds, not taking rescue meds as I don’t have enough, frustrated at the barriers to access timely GP care, day off sick to sleep it off, going back to work within the wiped out postdrome of the 4 day attack, cancelling social plans, worrying about seeming flaky, the financial cost of late cancellations, lather rinse repeat. Knowing that my pattern of work was directly contributing, particularly night shifts. I started work as a doctor aged 23- why on earth was I still doing night shifts 17 years later? Also how painfully laughable it is that in the workplace it is normalised that those in my role often work for ten hours straight without a single break.
After a set of night shifts earlier this year, I was smug as anything at how well I was doing turning them around. Having treated myself to that ubiquitous Fontaines DC Bohs top, I climbed up a gorgeously sunny Calton Hill for brunch. Look at me, an inspired active daytime human living their best daytime life. A mere 24 hours later came the familiar heavy heavy fatigue of my migraine prodrome. It always feels like I've had a switch turned off. Day off sick Monday. Still ill Tuesday but working. Fully clinical on Wednesday. Tortured, unable to sleep pondering the following weekend of overnight on call Friday to Monday morning. The overwhelming feeling of ‘I can’t, it's going to break me’. I then made what was possibly the boldest decision I’ve taken in my life thus far (and I’ve had a few). Asked my GP to sign me off sick for a month to give me a circuit breaker.
Looking back on that (15 weeks to the day I started writing this), how naïvely I thought I would just shake all of this off and return to work after a month. How instead I have been fully cracked wide open. Worse health wise before I got better. The number of times I’ve said that to a patient without truly understanding. I spent over a month rarely being symptom free and wondering if I'd ever be like what I was again. What I’ve learned on my journey is that after years of your health being broken down it clearly will take at least a few months to rebuild.
A close friend remarked to me how good I was at hiding how unwell I’ve been. I read that as ‘but you didn't tell us’. Which I don’t think is true. Although it’s hard for people to get how truly debilitating a migraine attack is, especially if you look outwardly fine. I think the really terrifying thing is there isn’t anyone close enough to me day to day to see when I am really unwell or to notice the subtle signs. I missed them myself simply by putting the head down and carrying on. That hope that others might just notice rather than seemingly needing to scream in to the void I AM SICK HELP ME (or in my case, sobbing at a manager saying ‘I am in crisis mode with my health’). How awful it feels to go unnoticed. There really isn't anyone coming to save any of us but it cuts pretty deep when I feel like I’m a person who notices. Who has been called upon and taken from for support (and freely given it as it is embedded in my soul to willingly do this). I have definitely enabled a lot of take. Something else to work on (alongside my chronic illness management, weight lifting, predicting perimenopause and the endless supplement recommendations). My perception of that 'take' had been that it is wholly to do with the fact that I am single and childfree. Life isn’t absolute; of course it isn't that and I bear some responsibility. But I have allowed myself at times to mould into everyone else’s schedules and availability whilst not always placing enough importance on mine.
It’s hard to write honestly about the following as it sounds so fucking ungrateful. People reach out when you are unwell with kind platitudes like ‘let me know what I can do to help’ or ‘let me know when you are free so we catch up’. I’ve realised that that is not enough for me. I know so fundamentally that it is with good intent but I can't take on the effort of slotting in to your schedule or making suggestions for you when I'm ill. Show up. In person. Or on a phone call. Drop shopping off. Come round for a cuppa. In the case of one of my ride or dies, send a Domino’s pizza. In our society, there are set circumstances where this is more understood- like for a new mother, or the recently bereaved. But in a lot of situations we avoid contact as we don’t want to bother someone. I know it as I have done it. Even as some kind of self appointed amateur specialist on grief following bereavement, I’ve done it recently to a friend as I’m divvying up the energy I give out. It’s fucking hard to get right.
I feel like I have been ravaged by a medication that was supposed to help me. It undid me. Made me sad, made me sluggish, made me unable to sleep. Gave me nightmares of all the vaguely referred to above dead people in my life in horrifyingly gory detail. The washout from weaning off it was rough. I have a disease that is complex, unpredictable and neurological. Logic dictates that an effective drug should impact the site of disease i.e. the brain. But holy fuck the sense that my very being was changed is frightening and so beyond my control (see also- hormonal contraception, am I right). No thank you. I’d rather just have the 4 day migraine extravaganza without the additional thought experiments and inability to effectively exercise. It’s left me in a weird hinterland of being afraid to take any tablet. Which is bullshit, as there is an evidence based cocktail that I can take acutely to hit the migraine fucker on its head where it rears up (thank you oh wonderful neurologist for reinforcing this to me). Me, an expert patient as my GP calls me. A just title. No, I won’t subject myself to the lower evidence based horrible side effect preventative offerings left (they do work for some people, your mileage may vary). I want access to the tertiary level good stuff. Has to be some perk to this job. And I think I’ve gotten it, through a combination of speaking up for myself and those inexplicable twists of the universe that put you in the right place at the right time. For me, that was Derry. Who’d have thought it? The most left behind and ignored of the devolved nations, often pilloried in national healthcare statistics, allowed me access to a drug I need.
Being cracked wide open for me has actually been a net positive. Never before have I learned so much about myself, really had time to reflect on what is important. Who is important to me. How I speak up for me. How to say no and not over explain. Also how a tiny part of my soul dies when someone pronounces it ‘mee-grain’ and not ‘my-grain’. But this requires time, and modern life demands a lot of our time.
Back to the ‘mostly’ alone. Piecing myself back together in the midst of chronic illness has not been done in isolation. I’ve previously struggled with reaching out as I haven't always known what I need. Or been able to communicate it. My illness demands total isolation in a dark room left to rest when it rears its ugly head (it’s more of an exclusively right sided claw, like I’ve been stamped with the burning white hand of Saruman). And an odd time when I have explicitly asked I’ve been let down. But I know this- I do not thrive in isolation. None of us do. And for all my cynicism, it is a journey. There aren't any more eloquent ways to describe the figuring out of an illness or any longstanding circumstance. It takes time and trial to work out what symptoms are, what their impact is, what can be done to manage them and what support you need. How to communicate what your needs are. Access to migraine medication is often dependent on keeping a diary. Yet a specialist cautioned me on over analysing and recording. And changing my approach has helped me ride the wave.
Shout out to my family, my friends and my workplace who have been there in supporting me figuring this all out. All the aforementioned ideas for supporting someone come from real life examples of how they've shown up for me. Not once have I ever had any shitty pushback for being ill or made to feel like a flake; any time I had those feelings rise up was entirely due to a fearful perception within me. I’ve ended up having to change some of the ways I work whilst trying to not have a professional identity crisis. It’s a lot to navigate. If you utter the words ‘lucky you, I’d love to come off the nights rota’ or a variant to that effect, you’re going to get the full force response that your naïve and ill considered statement deserves. But with a smile on my face, as the old adage of what doesn’t kill you definitely makes you stronger is true. 1 in 7 people suffer from migraines, it is the second leading cause of years lived in disability, and it is not just a headache.
And there I’ll leave it. I’m not cured of my illness (and never will be).
But I’m better.
Thank you for reading.
