Category: Health

The Weight of the World

It’s a stressful time to be alive. There’s no doubt about it. Being someone that absorbs the emotional atmosphere around me, I find my body buzzing with tension in the air almost everywhere I go. I feel it on the roads where it seems like everyone’s temper is on a tripwire, I feel it in the supermarket where I rarely see anyone attempting to smize above their mask any longer, and I most certainly feel it online.

The litany of bad and contentious news is overwhelming; COVID has worsened with new and more severe strains, Afghanistan is crumbling, Haiti is suffering, the Pacific Northwest of the USA is burning-up and drying-up simultaneously, and the climate report is projecting even worse decay than was earlier realised. It’s heavy.

I think one of the things that I feel the most at this time, is a collective sense of powerlessness. We want COVID to dissipate, but it’s gotten worse. We want people to do the right thing, but we have no power to change anyone else’s mind. We want large corporations to start showing genuine social responsibility, but we’re ants in a giants’ world. We want the world to be taken care of – fed, loved, sheltered, and safe – but we have trouble just keeping our house plants alive.

It is this sense of powerlessness that can erode our sense of purpose and meaning in life. It feeds off our energy, and drains our emotional reserves. It’s like the totality of my resources is a wee krill, and the problems of the world are a blue whale – completely swallowing all I have to give.

When Delta came barging into our lives recently, I immediately recognised the feelings of angst in my body. My cells remember this feeling well. But this time, I decided, something has to be different. I’m not going to get through the other side of this never-ending story with my nervous system in shreds like I did last time.

You see, even though we feel so powerless, we’re actually not. We have more power than we realise. We have the power to make very practical decisions to ensure we preserve our emotional and mental health. Some of the things I have been implementing are:
– Muting friends that post a lot of information that I find stressful.
– Limiting my intake of news.
– Deciding that it’s not worth getting angry at people at the store not wearing a mask – it’s not going to affect change, and it’s only hurting me.
– Practising mindfulness – making set times throughout my daily routine where I intentionally focus on my five senses and being in the moment.
– Taking action. Doing what little things I can to make a difference to those around me – I may not be able to lobby corporate America, or house a thousand Afghan refugees in my spare room – but I can go out of my way to be kind to the checkout guy.

I actually think it’s been really important to remember what God has asked me to do: live in a way that exhibits the heart of Jesus in every little daily moment. He’s not asking me to singlehandedly fix the climate, or change the government, or carry the weight of the world on my shoulders. He’s only asking me to represent who He is in the limited sphere of my life right here where I live.

So I’m choosing to zoom in. I will be aware of what’s going on in the world, I will pray, and I will do what little I can to help, but I will mainly focus on the handful of people and situations that I do have influence over.

Here’s a little mantra I wrote myself for when the state of the world is getting me down, and maybe it will help you too:

I am just one person.
I have limits, and today I accept and honour those limits.
Even though the world is in chaos, it is not my responsibility to feel the collective turmoil.
And when I do, I will pray these feelings into my hands, and blow them into the wind, where they can be picked up by the One who has the heart that can hold them.
I am just one person.
And as one person, I have the power to love those around me, exercise kindness, patience, understanding and compassion.
I have the power to choose my actions and reactions today, and that is all that I can do.
I release myself from the obligation to do the impossible and I empower myself to do the possible.
I will stay in my lane, listen to my Guide, put one foot in front of the other, and let Him carry my backpack.

Love you friends, we’re going to be okay.
Deb xx

Losing my Rag

I am writing for work at the moment on the theme of ‘Mother Guilt’ – something from which, thankfully, I have always considered that I do not suffer too readily. I have always kind of figured that my kiddos will pick up a mix of good and bad from my parenting (hopefully more good than bad), and that they will have their own issues to process and work through as they grow up; issues which, as they process them, will make them more empathetic, resilient, and grounded human beings.

I already see large parts of my personality in Judah, my oldest. The insistence on knowing what ‘the plan’ is for any given day, the motivation to do just about anything for a lolly, and the inability to let things go – or the ability to persevere no matter what, depending on which way you look at it. I also see less of my personality, but more of my quirks in my little Mason – who knew that chewing those little bits of cheek/inside lip (what are those things called?!) is an inherited trait?

Although I don’t fret a lot about how my mothering is going to stuff up my kids’ lives, today I found myself huddled in the corner of the kitchen, sobbing, while waiting for the kettle to boil. You see, with the ongoing ups and downs of chronic health issues, I will sometimes find myself roaring at the kids over something reasonably minor. I know it gives them a fright – and you know what? It often gives me a fright too. I don’t often realise that my body is depleted and my margins are paper thin, until I hear just one more little argument about that stupid fidget spinner.

Because I’m a big believer in the importance of one’s intentions, I can so easily brush off my infractions by explaining to my inner-critic that I never meant to upset anyone, and I’m only edgy because I feel like crap. But explain that to a couple of kiddos who never know which version of their mum they’re going to get today…or a husband, for that matter.

I guess I find myself at this juncture where I feel a sense of responsibility to not lose my rag at my kids, and not be a grumpy presence in my home, coupled with this sense of futility and the thought that it’s just so bloody unfair that I have to try and practice self-control, when I just want to sit in the corner and wallow in how gross I feel.

That’s the thing though, isn’t it? Living in the way that Jesus demonstrated doesn’t come with caveats as to how one might be feeling at the time. He doesn’t command us to love our neighbour, only when we’re feeling good. He doesn’t teach us to put others first, but don’t worry about it if you’re facing stuff.

I don’t for a second think he’s standing there with a big stick, reprimanding me with a stern look on his face. No. I get the sense that he’s gotten down to my eye-level, with compassion in his eyes, and an invitation to lean on him, and borrow his love and grace for the people that I live with. My margins may be non-existent, but his are everlasting.

So friends, if you, like me, are facing struggles of some sort (and who isn’t?), and it feels like you don’t have anything but the scum of your personality to share with those around you, perhaps you will join me in resting in the love of Jesus, and allowing his love to permeate your frailness, and drift through you to your loved ones.

Love you friends,

Deb x

Pandemic Panic

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Frankly, being in the middle of a pandemic is really bizarre. I vacillate between, ‘It’s totally fine, it’s just the flu, we’re all going to be fine,” to envisioning life in a post-apocalyptic wasteland. I begin chastising myself that we didn’t buy a 5-acre self-sustaining plot instead of this suburban dwelling where, if we had to live off the land, we’d probably survive three days on dead grass and the scraps of decaying afternoon snacks left behind by the boys.

I haven’t succumbed to the bunker mentality…yet, but I must admit, while I haven’t stockpiled the loo paper, I would be lying if I said I didn’t add a few extra cans of beans and some hand sanitiser to this week’s shopping list (if we do end up having to live off what’s in our cupboards, let’s just say the meals are going to get less and less yummy by the day).

I experience a level of generalised anxiety on a day-to-day basis, due to varying factors, and this situation has definitely turned the volume up, as I’m sure it has for many of you. And while I can remind myself that this is unlikely to take my family out, and we’ll survive the economic fallout as we have before, the reality is that a worse case scenario is always a possibility.

What amazes me in situations like this, is how it highlights where my trust truly lies. It first came to my attention five years ago when we first moved to the States; I was thrown off-balance by realising that my safety-net of a familiar government that would take care of me if I was in hospital or we lost our income, was no longer underneath me. I was forced to intentionally put my days in the hands of God – a place where I had previously thought they were.

Once again, I find myself feeling off-balance. The comfort of relying on the conveniences and necessities that I do everyday suddenly seems less certain. The assumption that all is well, is, well, not so well.

I like to picture it like sonar – I go through life sending out pings and getting my equilibrium from hearing the reassuring returning sounds from the places I expect things to be. When all is as I expect it to be, I swim through life with a sense of safety and certainty. But in times this like, it becomes all too clear that my requirement for peace relies heavily on external things – the certainty of health, ready access to food and utilities, a guaranteed paycheck.

I hear an invitation in the midst of all this uncertainty. It’s an invitation to surrender. An invitation to relinquish control – the control which feels so important for my survival, but in reality, is only an illusion. An invitation to remember that a certain quality or length of life on earth has never been promised. An invitation to remember that my hope lies in eternity. An invitation to remember that Jesus sits right beside me as I type this, and his love and presence is as close as it ever was. An invitation to accept the unknown.

So, if you’re cool-as-a-cucumber and feeling not a worry, good for you. But if you’re a red-hot mess quivering in your apocalypse shelter, maybe, just maybe, something really beautiful can come out of this for you. Maybe this is the start of a peace you never knew was possible. So why not join me as I pray, “God, grant me the serenity to accept the things I cannot change; courage to change the things I can; and the wisdom to know the difference.”

Love you friends,

Deb x

An Ode to my Favourite Feeling

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I once heard some wise person talking about the best feeling in the world – and before I knew what it was, my guesses would have included love, mirth, joy, hope, satisfaction, fulfilment, or that tantalising anticipation of being starving/hangry at your favourite restaurant, but knowing you have just minutes to wait before you get to eat something delicious. But it was none of these things.

The best feeling in the world, according to this person (who obviously left a deep impression, because I can’t for the life of me remember who it was), is relief. Relief! Really? But the more I thought about it, the more it made sense. And since that time, it has become my favourite feeling in the whole world – so let me take you on a little tiki tour of the world’s greatest emotion in my life.

When I was around 14 years of age, an awkward stage at the best of times, I was having hideously painful cramps, so needed an ultrasound to rule out any nasties. To add insult to injury, the ultrasound tech was a young and studly male. The first time they tried to get an image, my bladder wasn’t full enough, so I was sent to the waiting room to let the water I had imbibed earlier make its merry way down. I was feeling a little sheepish that even though I said I’d had the requisite amount of water, if I was being completely honest with myself, I hadn’t. So, I stopped at the drinking fountain in the hallway and downed a gallon to make up for it. That was before I realised that they were also sending out the world’s largest tankard of water with the receptionist…which I couldn’t refuse, because then they would know about the drinking fountain, and make the connection to my earlier deception. Needless to say, my bladder was plenty full for the second scan (it was a blessed mercy I didn’t explode). Then, as I was leaving the room, the tech told me that the bathroom was just down the hallway, and I, at the age where needing to pee was an embarrassment in and of itself, just airily said, “Oh, no thanks, I’m fine,” and sauntered out of there like I wasn’t dying of pain in my lower mid-section. The car ride home in dad’s bumpy little Barina was about the most tortuous experience of my life – I literally ended up having to hoist my butt off the seat with my arms. But, when I got home, oh, THE RELIEF!!

Many of you will be aware that my husband Caleb got impaled on a job site in 2013 (that’s a whole five-part blog series in itself). When I made it to the hospital, I didn’t get to see him before he went in for surgery, so I was stuck waiting in this cell-like windowless room, with my dear friend and her then 5 month-old baby. I made a number of calls to various people to tell them what had happened, and one of those calls was to a friend of mine who was a nurse, so I could ask her questions about what to expect. She told me that I should expect surgery to take a minimum of six hours. After an hour-and-a-half, the surgeon came into the waiting room – I thought that it was either terrible news, or he just had an update for me. (In fact, I didn’t want to shake his hand, because in my frazzled state, I knew he had to go back and keep operating on my Caleb, and he shouldn’t touch my germs). But, the news was glorious! The surgery was done, Caleb was going to recover, and in the words of a man who looked like the person least given to hyperbole that I have ever met, “He is very, VERY lucky.” I think that this was the most overwhelming relief I have ever experienced…I laughed, and cried, and almost hugged the very cardboard man (but his vibe was most-definitely of the ‘no touchy’ variety). As we left the hospital to get some food (McD’s – the ieal food for a crisis), I jumped, I ran, and I even danced! (The only spontaneous dance I think I have EVER done). I can still feel that relief to this day – and that day goes down as the worst, then best day of my life.

I have a million other stories of blessed relief – too many migraines that finally responded to the pain medication, babies that eventually made their arrivals, and those same babies that finally slept through the night, kiddos that out-grew illnesses, assignments, practicums and degrees completed, medical tests and scans returned benign, necessary big-ticket items purchased, job interviews done and dusted, and first dates out of the way.

I am SO glad that the landscape of my life, with all its hills and valleys, is peppered with the airy, refreshing breath of relief. And do you know what the coolest thing is? I reckon that heaven is gonna feel a lot like blessed relief for a really long time.

Love you friends,

Deb x

What if Freedom isn’t all it’s Cracked up to be?

Product-ConstraintsI have been eating up the work of John Mark Comer and Mark Sayers lately. They have a Podcast called, ‘This Cultural Moment’ (I HIGHLY recommend) in which they look at what it takes to be a disciple of Jesus in our current cultural climate. In the episode I listened to this morning (at 6.00am while hiking up our local mountain – which has to be mentioned, because I forgot to take a selfie) they mention that for human flourishing, three ‘tanks’ need to be full; freedom – as in freedom of choice, individuality, expression etc., meaning, and community. I’m sure one could argue for other tanks, like food for example, but at the risk of indulging my contrarian nature, I shall digress.

They go on to say that in our current Western climate, the freedom ‘tank’ is full to overflowing, and as a result, the ‘meaning’ and ‘community’ tanks are suffering. This got me thinking about how true I have found this to be in my own life. Parenting is a prime example; it is, as I often say, the very worst and the very best. In this framework, you could say that this is because while the freedom ‘tank’ is totally plundered by my tiny baboons, the loss is well made-up by the massive deposit in the ‘meaning’ tank…but you can’t have the meaning, without the loss of freedom.

Another example of this is prayer; I have found a liturgy of prayer to be extremely meaningful and peace-making in my life, however I feel the restraint of sticking with it and am legit tempted to grab my phone at regular intervals. My free time is, by my own choice, being used towards a discipline from which I reap substantial benefits, but it takes the loss of small freedoms in order to achieve the reward of meaning.

The point that I take away from all of this, is the reminder that the constraints we face in life can actually be for our benefit. I know that sounds like some form of heresy given the world in which we live – a world in which unlimited personal freedom is Mecca. The problem is that we so often can’t enjoy the beauty and simplicity that God has provided for in this life, unless we have something with which to contrast it. I have never enjoyed sitting in my back yard, breathing the clean air and watching the trees so much as since I have battled with chronic illness. The restraint of physical symptoms has allowed me to find meaning and beauty in things I once took for granted.

Creativity is another such area which flourishes under constraints. We have a buddy that wrote and produced one of the most creative, intricate and peaceful albums I have ever heard using just his voice and one old electric guitar. The limitation of instrumentation brought his creativity to a remarkable place. Similarly (although not comparing my cooking to the aforementioned album), the elimination of grains, sugar and carbs from my diet due to health, has caused me to get really creative with inventing meals that are within the confines of my diet, but still taste delicious…(well, I think they’re delicious, however getting Caleb to try one of my keto ‘treats’ is like pulling teeth – and I gave Judah some of my keto ice-cream once, to which he responded, “Mum…is this an actual treat?”)

So, let’s be encouraged today friends, that whatever constraints and limitations we find around our lives, it’s possible, just possible, that our lives wouldn’t actually be as meaningful without them.

Love you,

Deb x

That Attitude of Gratitude

Peanut butter

I’ve been thinking about gratitude lately. It used to be one of those buzz words that annoyed me. I felt like it was the sort of word that people would throw out there to minimise people’s pain and use as a kind of silver-bullet-cure-all for any ailment from depression to the hot runs. I found it to be the domain of the Pollyanna types that lived in a Technicolor world that seemed so far removed from real life. And maybe it’s because in the church I have had many experiences where the message I received was that I should be grateful for areas of my life where things didn’t seem fair. Which kind of felt like someone leading their dayglo tambourine parade past my wheelchair and telling me to get up and dance – invalidating, and insensitive, and patronising.

But I’m seeing things differently these days. The really beautiful thing I’ve discovered is that gratitude has started creeping up on me. Instead of wielding a stick and trying to force gratitude, it’s been tapping me on the shoulder and delighting me with an infectious smile and a warm hug. I don’t think it’s just a spontaneous lucky break that it’s started happening, but as a result of engaging in practices that have taught my mind and spirit to look for the lovely. For the past several months I have been regularly meditating, practicing mindfulness, and becoming more present in my body. As a result of this I’m seeing joy in the small things I once took for granted.

I was putting the groceries away after a trip to the super a while back, and as I was putting food in the cupboard, I was overwhelmed by such immense gratitude that there was plentiful, healthy and delicious food to feed my wee family. I found myself holding the peanut butter in both hands, close to my chest and with tears in my eyes, whispering, “Thank you peanut butter.” (And it winked at me and whispered back, “You’re welcome Ma’am.”). Then I began thanking each item of food before it got stored away. Me of five years ago would be reaching for the barf bag about now, like, seriously, how cheesy can you get? But it wasn’t cheesy, because it wasn’t rehearsed or forced or staged, it was a genuine expression flowing from heart, and it just felt like the right way to respond at that moment.

The more we allow gratitude to win our attention, the more we will become aware of how much there is in our lives to be grateful for. Our brains are super cool – we have a thing called a Reticulated Activating System (RAS) that acts as a filter for the innumerable amount of data that we receive. The RAS is attuned to whatever we deem important, and it will filter out other data, and present to our attention the things that we have trained it to present. A perfect example of this is how when you buy a White Ford Explorer, it suddenly seems that every second car you see is a White Ford Explorer – your RAS has been taught that this particular car is now important, so it filters out all the other cars on the road, and zooms in on the pertinent vehicle. As we become more grateful, we will train our minds that this is important to us, and it ends up becoming an ever-increasing cycle of goodness that adds colour and music to our lives.

Allowing gratitude to become an active part of my life has genuinely brought me so much joy. Genuine gratitude doesn’t try and keep the lid on my grumpy-groozleness, or ignore the despair I feel when my head starts hurting again, but it contrasts those moments with such rich and fragrant and fresh and life-giving joy. I feel like I’m coming alive.

 

Love you friends,

Deb xx

She’s Really Let Herself Go…

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It was a couple of years ago that I first wrote on the subject of body image, and it’s time for another go-round. It’s been on my mind a lot lately. Since that time, my weight has fluctuated with the different migraine meds I’ve tried. I monitored it weekly or so by dragging my scales out of their not-so-hidden hiding place in the garage, almost guiltily jumping on the scale in a furtive fashion, and dealing with the emotional aftermath of my new number. Until, finally, a couple of months ago I decided I was over it. The scales had a hold of me that I was just done with. So, I bit the bullet and frog-marched them out the wheely bin. Good riddance. Or so I thought…you see, because I know where my parents’-in-law keep their scales…and one of my good friends also has a scale in her bathroom…and there’s one at my local pharmacy… so…

It is for this very reason that I realised I needed to make a more full-scale assault on this sense of needing to fit into society’s ideal of fit, healthy, beautiful, acceptable, or whatever you want to call it. It’s super sneaky. It’s ALWAYS in our faces. Always. So, forgive me if you feel like my words are a wee bit strong here today, I intend NO offense, but I need them to be strong to stave off the onslaught of shame that keeps trying to infiltrate into my world.

You see, once I got rid of my scales, there was a period of time when I was in the middle of transitioning migraine preventatives, and I could tell my body was changing, but because of lack of said scales, I couldn’t actually tell if it was getting bigger or smaller. But my health was much improved and I felt, surely, my body was beginning to reflect this. Until I ferreted out a secret-squirrel scale at someone’s house, and to my horror, I had packed on several kilos in a matter of a couple of weeks. What I experienced at this time was nothing more than a whirlwind of shame and despair. I expected to gain weight during pregnancy, then while breastfeeding, then on different migraine preventatives, but now, while eating gluten and sugar free whole foods, exercising six days a week, and generally in much better health? Nope. But it turns out that my new med, which is doing wonders for my head, is a weight-gain drug for me. Hooray.

I was chatting with one of my friends at this time, and said something to her that unwittingly set me on the warpath against the shame; “The problem is not that I’ve put on a few pounds – the problem is that I live in a society that says that that’s not okay.” Bingo. So I started to find some resources that would give me ammo for the battle. Firstly, I watched Taryn Brumfitt’s excellent doco ‘Embrace’ (on Netflix here in the US, but I don’t think in NZ as of yet…but you should find it somehow!! It’s SO GOOD), and listened to a body positivity podcast featuring Jes Baker, who is an advocate for body liberation, and a super onto-it chick.

What I have learned over this time, is that to simply start to love my body is great, but in essence, it’s simply trying to stretch the rules of acceptability in order to make myself fit. It’s changing the rules of the game so that I still feel okay playing it. It’s a wider (literally 😉) margin for the same old tactic of seeking belonging, approval and validity by external measures. Instead, I’m taking myself out of the race. Those rules can’t apply if you’re not in the game. My body is so useful in getting me around in this life, and for this, I am so grateful. But, it does not represent my value as a person. Not one little bit. So, whether it’s toned and slim and sleek, or a wee bit wobbly around the edges (or a lot wobbly), it makes NO difference to the way God has called me to live.

(As a slight aside here, I know that the old ‘but you’ve got to be healthy’ thing comes into play for a lot of people here. And I agree that health is essential. But I also agree, that it’s none of your business. My health is between me, my doctor and my conscience – which, btw, is totally clear.)

We’ve all heard the completely hideous phrase, “She’s really let herself go!” Well, it’s time to redeem it. I really am learning to let myself go – away from unkind, ungodly, media-perpetuated rules that tell me that how I look is the measure of my worth. I’m letting myself off the hook to spend my limited time, energy and money on things that bring life, love, wholeness and the Kingdom of God into this world.

Will you join me in letting in yourself go?

Love you friends,

Deb

A Chronic Pain in the Ass – Part II

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It’s been a couple of months since I wrote about my battle with chronic migraine, so I thought it time for a wee update…and the news is good!! At the beginning of August I started a two-month free trial for a brand new drug called Aimovig. It’s the only FDA approved drug available that was developed specifically for migraine. Apparently people who suffer from chronic migraine have too much of an amino acid called CGRP (Calcitonin Gene Related Peptide). I stick myself in the stomach with two auto-injectors each month and by some crazy magic, the drug finds it way to my brain and binds to the receptors in the brain that receive CGRP. This means that the peptide cannot land on my brain and it has meant that life has become a whole lot more pleasant!

The first month gave me approximately two week-long stretches of a clear head, but with a couple of MEGA migraines in-between. The second month I have had only one hideous migraine, and a few rough days, but more clear days than the month before. It builds up in your system, kind of like a vaccine, so that over time it should become more effective. It starts wearing off about 5-6 days before my next shot, which is funnily enough quite difficult to handle, both emotionally and physically. I think having a taste of freedom has raised my baseline of what is normal and the return of pain is more unwelcome than I could have guessed.

This drug costs like a million dollars (or $700 per month), and I’m currently having to appeal my insurance company for coverage, but thankfully the company that developed the medicine are giving it away for free for up to 12-months while the insurance process takes place.

Lots of people have asked me if I’m super excited about being so much better – and to be honest, I think I’m working through a bit of PTSD from the past couple of years, so it doesn’t feel safe to get excited. I thought the migraines would end once I got out of the first trimester of my pregnancy, and then once Macie was born, and then when I stopped feeding, and then there have been the four other preventatives that I have tried and been disappointed with. So, I’m wary. Getting my hopes up has proved dangerous in the past, and my battered soul is only just now daring to poke its wee head up above the trenches and check for the all clear. But oh, I am grateful, and so so relieved. I remember being plagued by pain, watching people walking by casually on the street, takeaway coffee in hand, and screaming on the inside, “DO YOU HAVE ANY IDEA HOW LUCKY YOU ARE???!!” Now I have a taste of how wonderful it is to commit to an event and have a fairly good chance of actually making it; of going on holiday with the family and not having to say ‘no’ to half of the activities because I have to lie in a dark room with an icepack on my head. And it’s so wonderful.

Something else I’m realising is that now life is returning to more of a normal state, my thinking requires attention. I have gotten in the mindset of a sick person, and while I still need to be mindful of resting and being careful as I recover, I also need to remind myself on a daily basis that I am becoming healthy. In fact, in order to re-train my brain I’ve become on of those irritating people that keeps a mantra on the lockscreen of their phone: ‘I am healthy, I have energy, I am patient, I am kind.” (Those last two are mainly in aid of rectifying the grumpy-mum situ that my poor kiddos have had to endure for the past couple of years).

So there you go! All-in-all very, very hopeful! I could not be more grateful for the amazing scientists and researchers that have devoted their God-given smarts to developing this drug – it is making a world of difference to sufferers and their families all over the States. Here’s to many, many more pain-free days ahead!

Love you friends,

Deb xx

A Chronic Pain in the Ass

migraine

It was about this time two years ago that we got the much hoped for news that I was pregnant with little Macie. After three early miscarriages, this was a much celebrated occasion and I was so elated! I had only known I was preggo for about a week when I started to feel really ill. Not just the usual nausea and fatigue, but I just felt really odd and off…like an alien had moved into my body. With this off feeling I also started experiencing daily headaches and lots of migraines. Being that I was pregnant, I couldn’t use my normal migraine treatments, and they become more frequent and more severe. I blamed it on the hormonal supplements I was taking due to the risk of miscarriage, and figured I would feel much better after the first trimester. When, in fact, things got worse in the second trimester, I just had to ride it out, trusting that once the baby was born, all would be well. Now, two years later, I’m still in a daily battle to manage chronic migraine.

Being the googling nerd that I am, I have become somewhat of an expert on migraine. So, let me inform you that chronic migraine is diagnosed for those that suffer over 15 headache days a month (less than that is termed episodic migraine). At the worst point, I was having around 20 migraine days a month, barely one day in four or five was a day I wasn’t in pain…and I pretty much never had a day when my head was clear.

So here are a few of my scattered thoughts about becoming an unwilling member of the community of chronic pain:

It sucks. Plain and simple. It really does. Part of me wants people to understand what it’s like to have to spend energy you don’t have looking after two young boys, and then all your ‘free’ time in a dark room with an ice-pack on your head. But then, the other part of me knows that it would be impossible for anyone to understand what it’s like unless they’ve been there.

It’s lonely. Pain is isolating. Making plans can be tricky and they’re always pencilled in, pending on what my head is doing.

It affects the whole family – especially Caleb. Goodness knows it’s hard enough listening to someone whine when they’ve got the flu, it’s virtually impossible for two whole years. He has to carry the extra weight with the kids and also deal with a wife that’s almost never 100%.

New, often really annoying, buzz words become part of your vocab. I remember one Christmas when I was little someone brought tiramisu for dessert. I had never heard the word before, and all of a sudden it was like the new hot word for the day; everything was ‘tiramisu this’ and ‘tiramisu that’, and ‘this tiramisu is lovely’, and ‘have you tried the tiramisu yet?’ SO annoying. That’s been our house for the past couple of years. Medical terms and drug names are an unwanted part of our lingo now. Some of the particularly irritating ones being  CGRP, trigeminal nerve, prodrome, Aimovig, Topamax and Ondansetron (which also sounds like it could be one of Optimus Prime’s buddies).

It makes you a crazy person. I google treatments ad-nauseum, even to the point where I have taken new treatment plans to the neurologist for his approval (which, thankfully, he’s really open to). I try home remedies (the most successful of which is strict diet control of no gluten or sugar, and drinking fresh steeped ginger root throughout the day). I even feel guilty when a bad migraine hits…I feel like somehow it’s my fault that I’m letting the family down again. It’s horrible.

I always thought that when pain struck, you could just take meds, it’s that simple. But with migraines, it’s not. After a time, abortive medications (pain relievers and migraine specific meds) actually begin to have a rebound effect and give you migraines. So I can only take two lots of meds per week at the most if I want to avoid getting into an awful headache rut that can only be broken with steroids. This means that I will frequently go whole days with a bad head, unable to take meds, only to cave in the evening because it gets too bad. It’s a really hideous situation to be in.

It’s super expensive. The Botox treatments I currently receive cost around $1,500 out of pocket every three months, money which we don’t have, and it’s a tough pill to swallow (metaphorically). The new meds I’m about to try cost around $600 a month, so it’s about same. It feels like a kick in the guts spending every last penny on treatments to make life more bearable, when it desperately feels like a holiday would be an infinitely nicer thing to save for!!

It’s not all doom and gloom though, God has been really kind, and a couple of kind family members have pitched in to help out with finance when they can. Additionally, things really are MUCH better than a year ago…I now usually have to medicate only a couple of times a week when things get bad, and I have a number of helpful tricks in my wee toolbox to manage my head. The Botox has definitely made a difference, but not as much as I had hoped, so I’m going to be trying a brand new preventative drug that has just hit the market; the first ever preventative specifically developed for migraine.

Your prayers would be deeply appreciated. I would LOVE to be able to get back to normal life in time, to be able to make it through the day without needing to nap (sometimes more than once), to have energy to play with my boys, to no longer feel the PTSD sense of dread whenever the pain returns, to hang out with friends, and to get off the meds that make me feel like a walking zombie!

Much love,

Deb xx