The Wheels on the Bus

So, I'm siting on the bus last night, and I really think I might be sick. 

I don't often get nausea with my headaches, but yesterday was one of those unusual days. I thought it was because I was hungry, when I got it on the way home from London. But I'd eaten, and now it's that dinner I'm threatening to revisit.

And I'm wondering what the hell I'm doing. I'm still going out to the cinema even though I've felt rough all day. When I got home I went straight upstairs and did some mindfulness. And in those moments of quiet my head threatened to get worse. The throbbing quickened, sharpened. And then it calmed. 
But then as I did some washing up, it tightened. I almost burst into tears at sheer frustration. Then I took a few deep breaths, hardened my resolve, and carried on.

And now I was sitting on the bus, feeling sick and getting awful sharp pulses in my neck - my neck! - that were only adding to the deep aching that had spent most of the day in the right side of my head, but now for some reason was residing in the left temple. 
A drink or two, and then two hours in a dark room with bright lights on a big screen and loud noises all around. Just what the doctor didn't order.

But you know what?
My head got bearable halfway through my first rum and coke. And whilst I was aware of the pain, I was too distracted to pay attention to it. 
It was bearable throughout the movie. 
And outside, it only reared ugly, aching, nauseous head again when I had to run like a superhero for the bus. 

So there I was - again - sitting on a bus, with a pounding head and that feeling in my mouth that you get just before you vomit.
But I didn't. I got home. I took my pills. I went to bed.

And today is another day. Today is another day of fighting my head. Fighting for a pain free life. 
Fighting for myself. 

Irreparably Damaged

On Friday night, I went to bed at half 10, because my head hurt.
I woke up on Saturday feeling almost as fresh as a daisy - as fresh as a person with chronic pain and muscle tension can feel. My head felt fine, better than fine - it felt great. 
Until it didn't. 

It was about 11am, I think, when it started hurting. I still managed to tidy the garage up. 
And it got to 3pm when I decided to have a nap, hoping I could sleep it away. 
When I got up at 6pm, I felt better.
Until I didn't, again. 

It's on these days when you feel there is no hope. When you feel as though you are going through a constant cycle, on a rollercoaster, through continual ups and downs. A ride you're not enjoying, but you can't get off.

It grinds you down in the end. It grinds you down and wears you out and you become exhausted.
Even though in the morning I felt really pretty good, last night it didn't seem like there would ever be anything different. Like my life would never be anything but pain.

And I started to think: this is my brain causing this. This pain may not just reside in my head - it may spread to my neck and shoulders and down my back and into my hips, but it starts there. And the brain is the nerve centre for the body, telling it what to do, keeping it functioning. 

And mine seems to be damaged. 
I am damaged. 

Probably irreparably.

And I'm supposed to come to terms with that?

Running up that road

This morning when I woke up, I could barely lift my head off the pillow.
In my right temple sat a weight so heavy that it hurt to move.
For the first time all week, I had hit a 9 out of 10 on the pain scale, and it warranted some painkillers.

I'd had this particular for about 18 hours at this point. All the entries in my headache diary were 7s and 8s, and even 8.8s. But never a 9.
At lunchtime today, despite taking 2 aspirin at 9am when I got up, I was at a 9.2. It hadn't touched my pain, and I could barely do anything.
I was lying in the dark just after midday, wondering how the hell I was going to get through the day if this aspirin wasn't going to help, when my friend rang.
And my first thought was to ignore it.
But instead I answered.

And it could have been the honest, friendly chatter of two mates hashing out dilemmas, exchanging the dramas in our lives, or it could have been the radiation that mobile phones release. Or maybe, 3 and a half hours later, the aspirin I took started working.
But whatever it was, my headache actually got better.
It went from a 9 down to a 7. A 7 I can bear, even if it's a constant 7. You'd think a 7 sounds high, but if I was going to say my base state is anything, it'd be somewhere around 6. So a 7 isn't all that bad.
I'll add up all the scores in my headache diary and find a median state for you, if you'd like.

I was meant to get up for a run this morning. At 9am this morning I would never have thought I could go for a run at all today. 
But at 4pm I did. 

I was going to say I am not the same woman this evening as I was this morning. But the fact is I am. I am two different mental, physical and emotional states of the same woman. The difference is that the woman that's writing this right now is positive about life and the woman that made the below video blog was in a state of despair.

And that's something I need to work on.

My Head Aches: Part 5, aka The part where disappointment is the most bitter taste

When life gives you lemons...

Walking away from St Helier hospital on Monday, I couldn't help but cry. I tried not to; I was in public, about to get on a bus. But even on the phone to my nan, who I know I need to be strong for because of everything else going on, I broke down.
And when my mum phoned me a bit later, I was in the middle of another big cry.

I couldn't help but feel like I'd lost. Like this was my last stand - insisting I got referred, desperate for a new perspective.
I didn't get a new perspective. I got the same old stuff about medication. At least I wasn't asked the same old questions about water consumption, diet, sleep, lifestyle, but that's because I wasn't asked anything. Saying that she thinks my body needs rigid sleeping and eating patterns without even asking if I already have these?
As I said to her, there is no rhyme or reason. I could get 4 hours sleep and be totally fine. I could get 10 hours sleep and be ok. I could get the recommended 8 hours and wake up in agony. I've tried eliminating triggers, and I avoid the four things I know give me migraine: saccharin, Sesame Snaps, dark chocolate, and cheese. But I don't get migraines that often, so that information isn't really very useful. Trying to eliminate Coca Cola at the weekend only resulted in negative results - after twice getting intense headaches after drinking it, I then twice got no reaction from the same thing.

I've written to the Patient Advice and Liaison Service with a 5 page letter about what happened, and included all the information that this woman did not have. The information I had to pay for a copy of, but surely she should have access to for free.

Now I don't feel like I've lost. Now I feel like I lost some ground, but I am rallying my troops to recapture it. 

I don't feel quite as let down as I did on Monday. I feel like this is just another hump in the journey that is my recovery. It's just one that I'm still really annoyed about.

My Head Aches: Part 4

My Head Aches: Video blog part 3

My Head Aches: Video blog part 2

Video Blog - My Head Aches: Part 1

Crappy head, crappy mindset

It's a wonder I've kept hold of my sanity, though when I think about it nearly 9 years of pain must have had some effect on my mental abilities too, not just my mental health.

I got through my A-Levels with this brand new, confusing headache. I studied for my degree with an ever-increasing feeling of despair, and disbelief, and graduated with a 1st.
I've been working for 4 years, and still I can get through a normal working day, sometimes a lengthier than normal day, with this head.

But sometimes, I stare at the screen, and the light burns my eyes. Sometimes the noises in the office, of phones and talking, is hard to bare.
Sometimes I wonder how the hell I manage to do anything when it feels like someone is drilling from the inside of my head outwards.

Sometimes it's all I can manage not to cry and admit defeat and just drop my head on my desk and do nothing.
And that's usually when I swallow the pills.

Don't Let It Get Me

It's hard not to be disappointed. Going to a new alternative therapist, hoping against hope that this one will be different. This one will work wonders.
This one can help you be fixed.


First impressions aren't everything but...my first impressions were not favourable.

"So, dude, what do you think's inside that hatch thing?" "Hope. I think hope's inside."

August 2015 is an important anniversary. In 1 year and 2 months I will have had this headache for 10 years. 

A decade of pain. A decade of frustration and despair. 

A decade of false hope.

I don't want to get to August next year and still be in pain. I want it to stop. I want to be better. I want to be fixed. 

When I was told that because I had chronic pain I couldn't bungy jump, I was angry. Angry at my body, my head. Angry at life. I wanted to get this sorted, I wanted it to stop holding me back. I wanted to be free.

So I went to the doctor yesterday, to ask his opinion. To ask someone else what I should be doing, what I could be doing. 

I opened the hatch. 

And what was inside?

Sorry Locke, but it sure as hell wasn't hope. 

I want to be fixed? 

It's about time I fixed myself. 

The roads are bumpy in Tasmania

On my last full day in Tasmania, I emerged from MONA to heat. Actual sunshine, and warmth with it. Standing on the jetty awaiting the arrival of the ferry back to Hobart, I watched the water lapping over the rocks. Again and again and again.

And my mind felt as dark as the water surrounding me.

I imagined myself putting down my handbag, taking off my trainers, removing my sunglasses, and hopping lightly over the glass barrier, plunging into the water. But the water by the jetty is rocky, so I wouldn't just plunge down into the dark, shivery depths; I would fall hard and fast against solid stone.

And I imagined for a moment: what if I did that, and my headaches went away? If I smashed myself against them, would they correct this abomination inside me? Would it die? Would it finally subside and disappear as I have dreamt of it doing countless times?

This headache is like those waves. They break over me again, and again, countless times, never ending.
And I am promised salvation by those that never deliver it. I put my faith and trust in them, and they never deliver the freedom they promise me. It's a wonder my trust isn't used up, that the well of hope hasn't dried up.

It's still full enough to provide me with tears.

On Tuesday, I went most of the day with a headache. A headache I pushed and prodded at, tried to breathe through, that made my head, and my soul, feel heavy. At 6pm I took painkillers. And by 7pm the 8/10 scale headache I had pushed through all day was down to a 3. I could engage with life again.

If I could, I would take painkillers every day. But I am on medication designed to free me from a dependence on them. Frequent painkiller self-medication can and does result in medication overuse headaches and then I'm adding another resident to the can of worms that is my head. And sometimes when I take painkillers, they only take the edge off - taking a 9 down to a 6. But I'm willing to bet anyone else's 9 is my 6 in the first place. I tolerate the pain because what the hell else can I do?

How can a person thrive when every beautiful, amazing, incredible experience is marred by a constant agony?

If a bird or animal in the wild is too ill to carry out it's everyday tasks, it dies.
And yet I live.



And yet I live and there is so much left to see. I am slightly nonplussed by the ancient rainforest and bush of Australia, having seen it a fair few times. But I live for the day I step into the wilderness and am overawed by the sheer scale and beauty this earth is capable of producing.


And yet I live and there is so much left to do. Exploring new places, learning about new cultures. There are mountains to climb, though the first is within me it seems.

Is the answer to ending this abomination inside the very organ causing me such agony? Could my brain hold the key to what is torturing it? Can the healing only come from me?

I am haunted by what was, what is, and what may be. I do not want to live a life where the moments I savour most are marred by pain, or the moments of freedom from that pain are brief, as though they never happened in the first place.

Heh-day-key

Break the head down into chunks,

Chunks that hurt and chunks that don’t.

Chunks that burn and boil and boom,

And chunks that can’t, chunks that won’t.

Dissect me into pieces,

And take my mind apart.

Break into the sections,

And pack away the heart.

There’s a fire raging forward,

Tearing limb from limb,

Leading me into lava

Where I’m struggling to swim.

There’s a dragon sitting on my neck,

Breathing flames into my skull.

Burning muscle bone and even breath,

And the rest is left quite dull.

When you spiralling down a whirl of pain,

Leaving it hard to see.

You wonder how much longer,

This can even be.

There’s a fire raging forward,

Your courage eradicated.

Unstoppable until

You’ve slept or ate or medicated.

You’re broken, oh so broken

Split right through the head.

There’s still a small-ish part of you,

That wishes you were dead.

And so the migraine passes,

The pain has left , hooray!

It’ll just come back though, it always does

The headache that never goes away.