‘I debate urinating in bed to avoid the pain of lifting my head’

Living with chronic migraine: ‘I wish my pain was visible and I wish it on my best friend’

Bridget O’Dea: ‘I have suffered from chronic migraine for nine years. That is 3,285 days in which I have not experienced one minute pain-free.’ Photograph: Dave Meehan

Bridget O’Dea: ‘I have suffered from chronic migraine for nine years. That is 3,285 days in which I have not experienced one minute pain-free.’ Photograph: Dave Meehan

 

Laid flat on my back in debilitating, nauseating pain, each blood vessel sensitive as a xylophone key repeatedly being thumped, I think of the cliche ‘I would not wish this on my worst enemy.’ And as I debate urinating to avoid the pain of lifting my head and struggling to the toilet, I agree: I would not wish this pain on my worst enemy.

No, I wish it on my best friend.

Every friend, in fact, family, every colleague, boss, medical professional, current and previous lover.

I wish it on everyone I have loved and do love. I do not wish it upon them in as persistent and as frequent a basis as I endure the pain, of course, but I do wish that just once everyone could experience the reality of this pain.

Even just so that next time I cancel plans, call in sick or ignore your call, it is because I have a migraine, not “because I am a mild-mannered sensitive girl”, as one doctor recently described me. It is because I have a migraine: a serious and disabling neurological illness.

I have suffered from chronic migraine for nine years. That is 3,285 days in which I have not experienced one minute pain-free.

That is 3,285 mornings of waking up endeavouring to smile and embrace the day ahead, motivated to achieve and enjoy, determined to succeed, and fighting to ignore the pain, like a broken drawbridge which refuses to lift.

I go through good patches and bad patches. A good patch means pain level three to five out of 10 on a daily basis with one acute migraine every three to four weeks. A bad patch can mean a daily pain level of five to eight and one to two acute migraines per week. I am in a bad patch at the moment, spending on average two days per week bed-bound and struggling to lead a semi-normal life the other five. A lot of my friends won’t know this. The majority, in fact.

The man I have been dating recently, who has kissed every bruise on my thighs, has not seen the pain within my head. Nor does he know that when I sleep over and miss an hour’s sleep, the left side of my head will become an obstacle on a dart’s trajectory through which each inflamed dart must pass until I go to sleep that night. Or possibly the following night.

Basically, people don’t know the reality to the pain nor the situation I face. They don’t know probably because I don’t tell them. And why I don’t tell them, I cannot quite understand myself.

The term “vulnerability” often comes to mind. It is a hypothesis that I generally tend to reject, wrongly or rightly.

For me vulnerability is beautiful and its juxtaposition with strength is an eternal source of wonder and intrigue. Although, perhaps vulnerability is less beautiful when it is your own.

At times, I consider the embarrassing possibility of embarrassment. I am embarrassed by my illness. I am embarrassed to have been registered with the university’s disability service, to have received special accommodations for my second- and third-level examinations, to have had weekly meetings with a learning-support occupational therapist, and I am embarrassed by my pain.

I do not entirely understand the root of this embarrassment.

I do know that I fear not being taken seriously, not being believed but being treated as a “mild-mannered sensitive girl” who I know I am not.

My pain is on such a consistent and chronic level that I fear being labelled, perhaps, as dramatic, self-obsessed, “moany”, a “whine” or being dismissed.

Two days ago, a migraine flung my brain into a state of serious upheaval.

I was in immense pain and moving in and out of fitful sleep – unsure whether the imagined nightmare of throat gagging was worse than the reality of the pain in my awakened moments – my body felt so heavy it was sinking through the metal of the bed frame and each blood vessel a firework exploding with blinding light.

My thoughts were fairly scattered but a wry grin drifted to my cheeks as I thought to myself, “Migraine, that’s just like a bad headache isn’t it?”

Another cliche I often hear from people who have experienced illness or trauma, is that they “wouldn’t change it for the world”.

My illness has taught me to more creative in adapting my world, in self-care and time management. It has developed my skills of listening and honed my empathy and compassion for vulnerable populations.

It means that when I read about the refugee crisis, I can empathise with a population whose hurt is ignored and misunderstood, or that I can empathise with individuals who have suffered a traumatic injury and feel betrayed by their body.

I can empathise with TS Eliot when he fears living a life so insignificant it could be measured out in mere coffee spoons.

I am not claiming for one second that my burden equates to those in such situations, but rather that I do have some minor insight into the hurt and loss certain individuals may feel. And I wish I didn’t.

I wish I didn’t know what it feels like to believe that you will never reach your full potential. I wish I didn’t know what it feels like to be in so much pain that you don’t remember what it feels like to be light.

Migraine has affected who I am today, it has made me stronger and has taught me many skills. But I would give back every lesson it has taught if I could return the pain with it.

I have heard sufferers of mental illness comment that it is easy to speak about ill-health when it belongs to the past. This is a truth that pertains to my situation, and that of many others too, I imagine.

Speaking about ill-health in the present tense, as a current truth, is where the problem lies. Or does it? To be honest, I have faced misunderstanding, and intended or unintended ignorance, but in revealing my illness I have never actually faced any form of hostility. I often feel lonely, alone in my pain but the irony is that I am not alone in feeling this way.

Pain is a certainty of human existence. It is something we all experience at some point, but why do so many of us hide it away?

A “dirty STD” of shameful experiences, revealed only when the rash spreads too far. I must reiterate that currently I am experiencing a bad migraine cycle and this is not always the case. I have a lot of positives in my life. I am surrounded by an abundance of love and, despite everything, I am generally very happy.

This is how I am feeling now and this feeling is valid. This hurt is as valid as my laughter last week surrounded by friends, as valid as my excitement before heading abroad this summer and as valid as the joy I will feel soon again when the pain returns to a level three and I am back in the wonderful world outside.

All feelings are valid. I know I am not alone in experiencing pain. It is a part of life that manifests itself visibly and invisibly.

Sometimes I wish it was always visible; a violent rash that showed the pain lest the doubting Thomas not believe, but the vain young woman in me is happy also that this is not the case.

Instead, allow us give visibility to invisibility through our words. Allow us speak about pain, hurt and upset as it is in the present.

Migraine is a disabling neurological illness. I should not feel embarrassed. Don’t make me validate my pain. I won’t make you validate yours.

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