Please please please

Won't someone get this pain out of my head?

Admin & paperwork

I have a headache right now. It's pretty tight around my forehead, sharp aching. 
But I'm not writing it down. I've made earlier this evening my cut off point for my headache diary, and I've spent the best part of two hours filling in and typing out and now printing 6 months worth of headache diary. 

I'm almost ready for the appointment tomorrow. Physically anyway, with all the paper work and documents.

But mentally?

Nah. Not at all.


33 pieces of A4 paper, 32 double sided.
Month 1 printed out from my excel document came out as 15 pages.

Thankfully my dad buys the printer paper.

"Somewhat misleading"

I've never had much information about my headache from medical professionals. A diagnosis of "chronic daily tension headache of muscular contraction type" with a side note of "you need to relax more".

I was absentmindedly Googling this week and I discovered this description:

"The term tension headache is somewhat misleading, as it may suggest that the headache is caused by psychological tension or stress. In the past, this was indeed thought to be the cause, but we now know that this is not always so. Tension headache is actually a kind of general name for various types of headache that do not fit into any other category. Tension headache is generally divided into a type that occurs on less than 15 days a month and a chronic type that occurs on more than 15 days a month.

Cause
In many cases, the cause is unknown. Hereditary factors appear to be involved. The disorder is often associated with poor posture, the use of painkillers and fatigue, but psychological stress can also play a role."

So.

Chronic, because I have it everyday.And tension because it's not a migraine or a cluster headache, and it's not caused by a brain tumour or a bad jaw or eyesight or any hormone imbalance.

And have I always had poor posture? Or is it possible that I developed poor posture because I had a really aching head that feels heavy so much of the time and I just want to chop it off and lie it down for a break.
Use of painkillers: possibly. But I've come off them. Twice. I now keep my painkiller days to less than the vital 15 days a month. So...why is it persisting?Oh all that psychological stress...

Sigh. 

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.

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.

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 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.

"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. 

Short Term Gain, Long Term Pain

Think about where you are right now in your life. Maybe think about your job, your relationships, friends and hobbies. Think about your health.


Now think about where you'll be in 5 years time. Whether you'll be in the same job, be with the same person. Whether your health will still be the same. 


My acupuncturist today talked about how, 5 years into the future, my headache won't be such an important part of my life. 


But how can he know that? How can anyone know that? How can I dare to hope that? 


When you have chronic pain, you forget what life was like before it. You forget what it feels like to move without things aching, to wake up and spring out of bed. You can't remember the last week you went without trying some sort of pain relief, whether it be conventional medicine or otherwise. It still feels like regardless of any improvements over the last year, I still cannot envision a day without my headache. Without at least once a day going "ooof that hurts" or "urgh that aches". 


But my headache HAS improved in the last year. I've gone from needing deep heat on everyday, to every so often. I take painkillers less than once a week, when it used to be a miracle if I went a few days without them. 


I still crack and rub and generally wish away the pain, but I can't deny that there's been some change.

But some change doesn't feel like anything when you've been putting up with this for 8 years. And when a general improvement is punctuated with moments so dark, so distressing and so deeply agonising that you can barely gasp for breath, it doesn't feel like anything has gotten better really. 


As I write this, my head aches and my neck is so sore. When you've read this, and you go back to whatever you were doing, my head will still ache, my neck will still be sore, and I will still be thinking about 5 years time. 


Maybe, in 5 years time, I will be free.

Hello headache, my old friend

For more than eight years now I've woken up every day and had a headache. Eight years is a long time for my paltry memory to reach back, so I can't remember if it would be there when I opened my eyes right at the beginning. But in the last 5 or 6 years, it generally has.For a few bleary moments, approximately a second and a half, when I first open my eyes, my mind adjusts to the situation, and the context in which I base myself. This context of young woman with constant headache. Often, unless I am instantly hit with an inescapable thud of pain, those few bleary moments are a few bleary moments of freedom. It's as though my headache is waiting in the wings, a Pantomime villain, and my temples, my neck, my skull, my nerves and blood vessels are all about to join in a chorus of "he's behind you!"

And then out from the wings he leaps, cackling evilly and all the pain arrives trailing behind him like small minions. The headache orchestrates the minions, directing them to where he needs them most - lying across my forehead like a wet flannel, resting in my temple like mini Buddhas, ohming a tingle of agony. 
All this in those few bleary moments. 

I thought my headache was getting better. But this morning, as with yesterday too, my pantomime villain was barely containing himself to the wings before I opened my eyes.

And at 2am he snuck his new favourite pal in too: hello nausea, you sneaky bastard. I thought I'd had enough of you. 

When my alarm went at 7am, they were both there. Picnicking. Dining out on my nerves and blood vessels and pushing on certain bits and pressing on others. Feeling nausea lying in my throat; my headache lolling around above my eyebrows.

Dine away, villain. Push and press away. The context into which I awake everyday might include you, but it isn't solely about you. I am more than my pain. Good always defeats evil. Go back to the shadows with a boo and a hiss. You won't be missed. 

Waking Nightmare (aka 2nd migraine in 10 days)

I can't stress to you how much I know I could be worse off. 

But headaches, they affect your mind, and your perspective. 

Even as I cried in my dad's arms last night, there was a guy on the news who had been on the organ donor list for years. He's really sick. He's worse off.

I'm not dying, but sometimes it feels like I am. And sometimes it feels like it would be better if I did. 

Headaches are underestimated. You can't see them. If you don't suffer from headaches you can't understand the pain. If you've never experienced a migraine, then be grateful and pray you never do. 

The pain that can sometimes be a waking nightmare. A pain that stops you from moving, because every movement feels like the searing of flesh. 

It encourages a state of mind where nothing exists but the pain. Where you can't get to sleep because it hurts. Where you wake up early from the pain. Where you could be eating cat food for all you know, because your taste is dulled and the repetitive chewing motion you're putting yourself through feels like it'll go on forever. You're not in control of it, you're on autopilot. 

This headache, the constant dull tension headache and the throbbing migraines alike, they rob me of my control. Control over my movements, my actions. Control of my head. 

And especially control over who I am.

I emerge from my dark bedroom and my sick day still in pain. The remnants of yesterday's migraine linger on. 

And I soldier on. 8 years of pain. 

But I think I might be beaten. 

There's only so much a person can take.

Sour Patch

I have a spot on my neck, at the base of my skull, that gives me a lot of grief. 

From now on I'm going to call it my sour patch.

It hurts. It aches. It burns. It stings. It weighs me down. It feels like a pool of poison that spreads through the veins into my head. 

I woke up with a strong pain in this sour patch yesterday morning, and I knew it would be a bad day.

And it was. It was unpleasant, but anything that isn't a migraine I'm getting better disposed to cope with.

But I find my commitment to my treatment suffers when my head is worse. I stretch less. I'm more inclined to try and crack out the pain. And cracking my neck (and back and knuckles) is something I've been banned from doing. 
But still do. And I do it especially when I have a bad head because I feel like surely cracking that horrible area will release the tension and therefore the pain.

It doesn't work like that. I know it doesn't work like that.

I really wish it did.

But instead, I carry on. I try to remember to do my stretches and my breathing. 

And I'll try to remember not to crack.

And the most important thing, and the hardest thing to remember when you have a bad headache, like yesterday or like Friday's migraine, is that not every day is like this. Not everyday is this bad. Yes I still have a headache today, but it's a different headache. It's like tomorrow won't be as bad. 

Unless of course I'm brewing a menstrual migraine. Then it'll be 3 days til tomorrow won't be as bad.