Amanda's story

AmandaDear Migraine,

I feel it’s time to write to you. You have been a part of my life for so long, causing me pain ranging from a slight ache to unbearable agony. I have known you from the age of 13 and despite a hiatus for several years, we suddenly seem to have developed an unsettling, formidable, and hugely influential relationship that is having an enormous effect on my personal and professional life.

Despite not materialising much during my 20s and early 30s, I guess you were always there. Watching and waiting to rear your (apologies – as I know you extremely well and know you deserve much respect but I must say it) ugly head once more.

Most times I beat you and you know it. At times I can handle you and control you, regulating my physical and emotional pain. It exhausts me, but it makes me feel fantastic too. I love life and the people I have in it. I so just want to enjoy them and to show them happiness too.

However, you recognise the difficulty I have in keeping control at other times and my inability to cling on to and use all the wonderful and happy things in my life to keep me afloat. You use this against me, and to full effect. When you are absent I feel so happy and unbelievably lucky with the life I have. So why do you have to return, become such a blatant presence and cast that all aside? You creep like a mist floating through my very reason, cast moments of doubt and leave me feeling as if a dark cloud is about to descend. It inevitably does. Despite my resistance, I feel like I am being pulled under water for the umpteenth time. My mind becomes vague and my thoughts unclear. I embarrass myself time and again when speech becomes difficult: the simplest of words balancing precariously on the tip of my tongue. My inability to express myself, with the vast vocabulary within my possession, is torture. You make me feel foolish. I doubt my own intelligence. Those close to me become the enemy, as if you want me all to yourself. Despite desiring escape to the very core of my body, and the avoidance of putting my loved ones through this, I feel helpless. I feel you take control over my desires, my ability to communicate, show affection and just be my normal happy self. You knock me and smash me until my strength has gone and then you know when to strike that final blow to make my life feel utterly pointless and hopeless. I can’t do anything but admire your strength and persistence, despite its effect on me. I only wish I could transfer that strength to my ability to fight you.

When I say ‘you’, I no longer refer to the ‘headaches’ and sickness I used to bear. It’s the weekly and often daily tirade of auras, neck pain and sheer exhaustion. An old symptom of numbness has also returned and scares me witless. At times, a numb arm and garbled speech have convinced me that I may be having a stroke.

‘You’ are also now no longer just physical pain, but the blackness that takes over my thoughts, my reason and my emotions: the blackness that causes hurt to my family and to my loved ones. I sometimes no longer know who I am. I no longer know what I’m doing or what I think at times. The thoughts that materialise in my mind during this time scare me so much. At times I daren’t even speak or look someone in the eye for fear of them being discovered. I often don’t even recognise myself: a stranger to my loved ones. It’s as if I can see them but they can’t hear me screaming for help. I feel like a shell has enveloped me and I am an insignificant version of myself right in the hollow of my body. Like a Russian doll, it feels like layer upon layer has built up around me and inhibits me from telling people exactly how I feel, despite the screaming that goes on inside ‘little me’.

However, the one silver lining is that you don’t last forever. But during your agonising presence, I can’t express to my loved ones that they mean the world to me, that I need them so much; that I need their touch, for them to hold me when I push them away, their reassurance when the tears fall and their love to wrap around me and ease the pain that you inflict on me. To tell them that this blackness has nothing to do with them. Nothing. I want to desperately apologise for the pain I inflict on them because of the pain you inflict on me.

I’m almost 43 and now have the joy of facing an even closer relationship with you through the imminent arrival of the menopause; my neurologist informs me that it will get a lot worse before it gets better. I am hoping and praying that the medication she has prescribed will ease some of your regular visits; the visits that affect my teaching career in a way that is hard for me to bear in a class of sixty children. It’s hard to explain to my children why a dark shadow casts over my face and why I can’t bear being touched or spoken to, often three or four times during the school week.

I long to wake up each morning without the first word in my head being ‘migraine.’ I long to fall asleep each night without the last word in my head being ‘migraine.’ I long for the day.

Yours respectfully (but bitterly),

The views and opinions expressed in this ‘Migraine story’ are those of the author and do not necessarily reflect the official policy or position of The Migraine Trust.

Thank you

The Migraine Trust would like to thank Amanda for not only sharing her story (which also features in the September 2017 issue of Migraine News), but for also raising money for our charity through taking part in the Great North Run. Visit Amanda’s JustGiving online fundraising page if you’d like to show your support.