Monday, 23 February 2015

Thresher Maw

This is the worst it's been in a long time. That I can remember. 
9 years blur into one long headache.

I remember significant non-headache moments, like year 2 of uni, after some Tui Na. A whole 15 minutes of peace. 
And 4 hours in Melbourne after 6 days of daily or twice daily massages. One afternoon in July when my headache was a 2/10 on the pain scale and I was bouncing off the walls.


This...phase... I'm dealing with, but I'm starting to struggle. I try to resist taking painkillers, and now especially because whenever I take them, they do nothing.  

This pain keeps coming, in sickening, crushing waves. It takes hold suddenly and winds me. 
I feel the breath escaping as it clamps around my head, my neck, it sinks its jaws into my skull.
It's burrowed deep within the bone and flesh always, forever, and like a worm it surfaces for fresh air and a bit of sunlight when it feels like it, displacing the soil as it goes. Imagine as it displaces that soil, it creates pain.   
That would make it right now more akin to a Thresher Maw.

Yes, this is what it feels like I have inside my head. No, I don't expect you to understand if you don't play Mass Effect.



I feel it creeping up through the muscles that hold my face together. Yawning, coughing, chewing: they can all exacerbate the pain and create twinges in my temples not unlike being stabbed. 
And if a glimpse of self-pity emerges, bringing me to tears on my morning commute, I have to quickly suppress them. Crying only ever makes things worse, and after your childhood it stops getting you anything. 



Not long ago, I stopped talking to someone who antagonistically said "F*** your headaches". He refused to believe that doctors couldn't tell me what caused it ("bullsh*t") and proceeded to basically say I wasn't trying hard enough to get rid of them and they couldn't be that serious anyway if I still had it after 9 years.
It's not as simple as saying "this caused/causes it". It's Chronic Daily Tension Headache of Muscular Contraction type, so my muscles are involved. But my muscles weren't this tight & knotted when I first got my headaches, so they were not the primary cause. 
I'm not supposed to take too many painkillers - no more than 15 days a month. Which leaves me in pain the rest of the month, and now apparently even those painkillers won't help.
I've eliminated foods, I've cut out caffeine. I came off the pill. I've been on 7 different medications. I've had blood tests and MRIs.
And now after nearly 5 years of not being under consultant-led care I'm trying to get it again. I made my doctor refer me. And that consultant was useless, so I asked to be referred elsewhere. And after 4 months of waiting for my new referral I discover they forgot to write it, so I'm still waiting.
How can anyone say I'm not trying? I do what they tell me, I try the yoga and the water and lentils and flax seed vitamins. The other night I tried something I saw on Pinterest where I put a pack of frozen peas on the back of my neck, and put my feet in a bowl of hot water.

Blurry photo courtesy of my dad.

It did nothing.

This last 10 days, I have tried to "f*** my headache". I've been to work, I've been to the gym. I've been out and about and drunk litres of water, and got to bed early and attempted mindfulness.

But this is just soul-crushing.

It's when you take ibuprofen and paracetamol, because you can't deal with codeine, and they usually take the edge off of a headache but they've stopped working and sometimes the headache gets worse even after you've taken them.
It's not realising you're crying with pain until it's too late. 
It's feeling an alien life form resting inside your skull and whenever you move your head it feels like it's so much harder to move because of the extra weight.
It's creasing your face up because of twinges of pain. Pain in your temples, behind your eyes, in your neck spreading up, in your forehead spreading down. Arcing over your skull. 

I don't want this. Trust me, I don't want it. But I can't afford 3 to 4 hours of massage once a day, not just in money but in time.



It pounds. It thumps. It thuds.
It pulses and aches and crushes.
It makes lights too bright, and sounds too loud. And functioning can become really difficult. 

And yet I do it. I put one foot in front of the other, and I carry on working and I keep on running. 
Don't tell me I'm not trying. I have to try everyday not to give in and give up.

Monday, 2 February 2015

Late frustration

I've just found out that the National Hospital of Neurology and Neurosurgery, where I am supposed to be referred to for my next consultation, has never had a referral letter from my GP.

I have in front of me the letter to my GP, from St Helier hospital, saying they are discharging me from their hospital and I should be referred to the National Hospital.

It is dated 6th October 2014.

On Friday it will be 4 months since that letter was sent.
I wondered what was taking so long.

Turns out, my GP failed me.

I am fuming beyond words, but I'm taking control of the situation. They will refer me this week, if it takes a phone call everyday to check up on them.


Just when I thought I was feeling the worst I could.