A Day Out with My Brain

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To the trains!

Today was a most intrepid day. I had Bowen lady followed by a neurology appointment.

to the trains!

Ten came with me, because, you know, traveling. The first half of the day was easy enough, but by the time we’d done it all I needed serious supervision to get home.

I’d wondered what he was going to do for the hour I was having the Bowen treatment, but I needn’t have worried, he’d already hooked himself up for a hang out. Turns out he has a friend who runs an arty bookshop just round the corner. We were a bit early so I got to meet her. She was very nice and advised me about selling my signed Damien Hirst book, which might be worth a bob or two.

I’d thought we should eat in Bethnal Green, but I felt too nervous, and wanted to be as near the hospital as possible in case of EVENTS and being late and everything. I am hardly ever late for anything. I get too nervous. Then I am stupidly early and have to hang around.

So it was a happy thing that Ten remembered the cafe at the Mary Ward Centre, where I taught once upon a time, so we went there because it couldn’t really be nearer the hospital without sitting in it’s lap.

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This hospital is the National Hospital for Neurology and Neurosurgery so you’d think all the doctors there would be pretty fancy. But no! It turns out my doctor was “only” a neurologist, and I would have to go to the extra super fancy Headache Clinic there to get the botox, but get it I very well may – ON THE NHS  no less. And at £600 every three months to get it privately  it’s rather worth the wait to get it free. Eight months waiting list to see them, she reckoned. But she also told me some useful stuff to do in the meantime which would mean I wouldn’t have to mess around having more appointments than strictly necessary before getting the good stuff (assuming they see fit to give it me).

Whereas our good friend Giles Elrington at the National Migraine Clinic (very worth the name drop as it turns out) will give you botox, if he sees fit, whatever drugs you are taking, this clinic want you to be off as much as possible, and will even have you in to get you off your drugs, so assiduous are they.

remember giles? he does as he sees fit. you can tell, can’t you?

Now, it has never been suggested that I come off the preventative pain killer I take (naproxen) before, but this is what she says they would want me to do. She also said I should go up on my mood stabilizer – this being a project I had put on hold for the winter because every time I go up a dose I have at least a week of ricochet headaches before it settles down, possibly because it has an effect on hormones, so these may be ‘period migraines’ of sorts.

See, the migraine clinic is a private charity – hence the cost, and also hence I could get the botox treatment before it was available on the NHS in London. So what I am thinking is that if i get Dr Elrington to hit me up with the good shit for one more time then I can a) feel a bit better at a time of the year when I traditionally start going on the skids pain wise, and b) get a kick start on the drug withdrawl.

I have done drug withdrawl many times, and I do know not to go cold turkey, but even so, it’s a hard thing to do when not all your pain is rebound pain. Because, dur, you are going to have ALL THE PAIN and it will be bad and it will continue. So having something to leven that with will be most welcome and certainly worth £600.

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Addendum

Just as an aside, really, I have to tell you I was super nervous about seeing the neuro. Doctors have a lot of power, and I’d never met her before, so I was worried about that, and also because my brain isn’t what it might be, and because I have had this for so very long, I certainly can’t remember all the drugs I have tried. Anyway it was all fine, she was kind. And impressed with my name dropping (thanks, Giles, for being so very name droppable).

As we approached the hospital I started feeling a little hysterical. I started wanting to shout “TAKE MY BRAIN OUT!”

When we got to reception there was a man working there with a huge bulging forehead.

einstein’s brain. thank goodness someone had the foresight to steal it! (click through for more einstein’s brain goodness)

I found myself having a kind of tourettish urge to shout about his massive frontal lobe. My internal head shouting continued after that at various intervals (I never gave in to it – I have SUCH restraint) up to and including when the neuro lady said that under some circumstance or other I would have “less” headaches.

Gentle reader, it took all my strength not to shout “FEWER”.

on mute

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in an argument between the mind and the body the body will ultimately win. FACT.

damien hirst

was it really only last week that i had the botox injections (31 of them) for my migraine? okay, it was 10 days ago, and it feels like a lifetime, because after i had them i went straight out and started living. i went on holiday – i traveled, i drank wine, i stayed up late, i missed meals, i said “yes” without thinking. it was WONDERFUL.

when i got home i carried on – i went long walks, i saw friends, i went swimming. i ignored the headaches, the neck pain, the stomach pain, the leg pains as best i could, i medicated and i blanked the information feeding back from my body – help! help! it squealed. and i blithely ignored “it”. my body. talking to me.

the swimming on friday was when i finally acknowledged that i had to slow down. before botox i could swim for five minutes at a time and pacing was a matter of restraint. this time round i had to break in the middle of the 5 mins and i could not do more than 10 in all. i had hit the wall.

rewind, then, my friend, to when dr elrington SAID you had to take things easy. you had to pace things. and start again.

by yesterday i had decided that i really must do a LOT less. and build it up. i could have told myself that. so why didn’t i?

it’s simple. i was being human.

it’s so counter intuitive to live without hope, without plans, to stop and rest before feeling tired, to stop altogether when allotted activity has been done. to recognize constraints. to respect limitations.

Ron Gilad – Mirror, 2011

happily for me, i have my buddha skills to turn to. because the visit to the land of hope and energy had me job hunting, house hunting, dreaming, and planning. all the while denying that – yes, i was still taking triptans. i was still flaring up all over. the botox gave me an inch and i had taken a mile without stopping to think about how, after the push, comes the crash.

i had a brief glimpse of who i could be, who, perhaps, i would be… if if if. if only. and then i came back to reality. just like all those people who play the lottery do every week. the truth is that the botox is good. i doubt i could have swung into denial for over a week if it wasn’t. i am still taking triptans, but i am responding to them better, i still get aches and pains but i can exercise more, i still get exhausted, but the fatigue doesn’t lay me so low or last so long and has less disastrous consequences. it’s good, it just isn’t that good. the magic bullet of fable is just that. and why should it be more, really? i suppose having paid £600 for it i want £600 worth of well. and i am getting it, it’s just not perfection.

and there are other avenues to explore – i’m not finished yet. dr elrington said that i could up my dose of venlafaxine (effexor). he looked it up, and it seems that the max dose is 5x what i am taking. my migraines went from daily to approx 3 weeks in 4 when i started taking it, so there is margin for treating it as a serious contender for migraine relief. for my part, i have to jiggle that with an antipsychotic to ward off mania, but knowing about risks like that is half the battle. (i take quetiapine these days, for anyone who is interested in the particulars).

i’m kind of sad that it is probably unrealistic to start looking for work just yet, but in all honesty i need to get generally fitter to be a contender as such. i have three weeks of lifts to the swimming pool with stephen before he goes on holiday, and my intention is to join the gym they are building nearby, so i can work on specific things, like strengthening my back.

back to life, back to reality…