Like a tea tray in the sky

I often use the word headache and migraine interchangeably. I think some people will have my head for it, but most people I talk to don’t really understand the difference and I’m always aware of the cultural stigma that clings to the word ‘migraine’. It’s an excuse word where “I have a headache”, or better yet “I don’t want to” isn’t socially acceptable. Nobody can object when you use it as an excuse, because, after all, it’s a neurological condition and everybody knows someone wracked with migraine headaches that always uses it as an excuse to cancel at the last minute. Maybe I’m oversensitive having been scoffed at many times since childhood for being unable to attend many events due to a severe migraine, then again, maybe not. I don’t bother trying to explain differences anymore, I no longer feel that I have to legitimize any pain or  disability and I don’t care whether the explanation or excuse I may offer is accepted or not. Besides, I don’t think a migraine is any a better excuse than a headache. I’ve had some mild common migraines and I’ve had some rather severe tension headaches from neck strain; with so much variability, nobody can or should judge whether the excuse of “I have a headache/migraine” is a valid one.

Today is the first headache and nausea free day after three days of hell and I am struck by how much a migraine changes my perception of reality and impacts on my ability to think, reason, concentrate and make decisions. The aura phase is always weird, but it only lasts for minutes not hours and as such, for me, always feels like the part where Alice tumbles down the rabbit hole, drinks the potions to shrink and grow and finally enters the garden through the tiny door. The headache part is very much wonderland and it’s really nothing like a headache. Common symptoms include headache, nausea, vomiting, sensory hyperexcitability (phonophobia, photophobia, osmophobia), mental confusion, impaired concentration, mood swings, blurred vision, pallor, sweating, nasal congestion, gastrointestinal problems, cold and clammy hands and feet, lightheadedness, fatigue, visual disturbances by linger or reappear and on top of the usual onesided throbbing headache, there can also be prominence of an artery in the temporal lobe, scalp tenderness, sore, stiff neck and some puffiness and swelling of the face and neck. It really is much more than just a headache.

For me it goes through phases. I can spend hours with extreme nausea and vomiting that induces the most skull splitting headache imaginable as the main issue. As the nausea calms down, usually when the anti-emetic I’ve taken finally kicks in when I’m holding it down for long enough, fatigue and particularly mental fatigue takes over. I’m tired, drift in and out of nightmarish naps and loose all sense of time and reality. At some point, the hyperexcitability will peak. I’ll be crying because the ticking sound of the clock in the hallway is as loud as a grenade going off next to my head every second; these days we no longer have any ticking clocks for that exact reason.

The smallest movement makes the world spin; the cat yawns at the foot of the bed and my whole world is suddenly spinning out of control, too fast, too quick, making me nauseous again. My dark room is never dark enough and tiny dim lights spark off another shower of flashy lights dancing in front of my eyes, blinding me. In between all these individual spikes, none of the other symptoms disappear and the constant bombardment feels like it will last forever. The pain is always, during everything, by far the worst and never really lets go. It moves from intolerable, reducing me to a crying ball of nerves, to just about tolerable, but still at a nine of a scale of 1-10. Minute after minute, hour after hour, it’s there, constant, hurting, slamming into my brain and there’s absolutely nothing I can do to make it any better.

Today, 60 hours later, the migraine pain is finally over, but the migraine really isn’t. I feel like what I imagine people feel like when they’ve spent the weekend drinking and partying and never sleeping. My head is a dull aching mass, my brain is sluggish and slow and I feel even more mentally challenged than pain usually make me, I’m exhausted, a little moody and depressed and I hurt all over. I guess I feel a little like I have the flu and I know this feeling will last for a while. My joints don’t like to be stationary that much and so I have the additional agony of living with shoulders that have dislocated a dozen times  in two days, wrists that wobble, hips that hurt, knees that pop and even chillblains underneath my toes from reduced circulation that make walking even more painful now.

I’m back on six hour days, spending most of my time resting and sleeping; recovering and it’s difficult to take long breaks every twenty minutes. But it’s breaks or trigger another migraine, so breaks it is. It feels like I’ve lost the last three days. Saturday evening is an almost clear memory, but from the early hours of Sunday morning, life is a blur of pain and suffering with a few comforting memories drifting somewhere amidst the chaos. I’m okay now and in a few days, I’ll be even more okay, but it never stops scaring me how distant the world spent in a migraine is from the one I live in normally. It is a Wonderland, with the lack of logic, bright bright colours and interesting characters that Lewis Carrol created and it really does feel like its ruled by the Red Queen who is so fond of beheading people that it’s a wonder anybody is left alive.

I didn’t like Alice in Wonderland as a child for this exact reason; in fact, I strongly disliked it. And yet, whenever my sister went looking for her hardback copy, she never found it because it was tucked underneath my pillow or my bed. It held both dread and fascination. It reminded me of what the days of pain is like when my brain doesn’t work the way it should and I can’t make sense of it. But it also reminded me that I wasn’t alone. I was Alice and there was The White Rabbit, The Hatter, The Caterpillar, The Cheshire Cat, Mock Turtle and all the other characters that in a weird way made sense of it all in a very nonsensical way. It soon became my favourite book and whenever the warning signs flashed for an impending migraine, I would find a quiet, dark place to curl up in and not be alone.