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 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.

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.

Deserving

At the first consultation of a new treatment Tuesday, after turning me into a human pin-cushion and hearing my life story, the acupuncturist said he didn't believe there was anything psychological to my headache. The solid mass that pretends to be my muscles gives him the hint that it's physiological. 

But at last weekend's hypnotherapy session I was asked about focusing on why my headache started. I spoke about how I often feel that I did something to cause this headache. The medication overuse, stress and anxiety, going on too many roller coasters. 

When you walk into a room for a Chiropractic appointment with someone who is not your usual chiropractor and they say that you're giving yourself mini-whiplash every time you flick your fringe out of your eyes and that's probably the cause of all your problems, you're inclined to believe them. They are the expert after all.

Except I didn't have a fringe when my headache started. Sure my mini-whiplash probably doesn't help, but it didn't cause my headache in the first place.

And the cause, the why my headache started, is likely to always be a mystery. Yes it could have been the stress of moving schools. Yes it could have been the roller coasters. 

Yes it could have been the medication overuse. And whilst I know that biologically medication overuse comes from taking pain killers too often, and not from huge quantities in one sitting, there is part of me that will always think I am to blame for this headache because of the things I have done, and because of the pain I have caused. It's karma. Except I can't cross it off a list like Earl. 

Trance on Saturday focused on emotions, and how they can cause pain. And how pain can manifest itself as an emotion. 

When I try to describe how my headache makes me feel, it's along the lines of frustrated, powerless. When I try to describe how my headache feels, if it were emotion, it would usually be anger. An anger that assaults my muscles, my skeleton, my senses, my organs. An anger that courses its way through my veins, pools in the temples, strikes behind the eyes, lies at the base of my skull, coiled like a snake waiting to spot its prey. 

When treatments don't work, I usually think it's because I haven't tried hard enough to make it work. When my head gets worse it is easy to point to the things I'm doing wrong, and not the things I'm doing right. The eating pastries as a snack, not the 2 litres of water I drink every day. The times I sit on my Xbox for hours not the runs I go for, the walking I do or the daily stretches. 

We only have one life, and sometimes it can be too short. I need to let go of this feeling that I did something in this life or lives past that mean I deserve this pain. I need to focus on making the best of the life I have, and make sure that I get the right balance to enjoy the life I deserve. 

The Problem With No Cure?

I haven't blogged here for a while not because my head has been good, but because I get so bored about talking about my headache, and I imagine so many people get tired of hearing about it.

What I would really like is a clean slate. For someone to take all my muscles out and replace them with new ones. To give me fresh blood vessels. To straighten out or curve up my spine so that's normal again. 

How much difference can you make to damaged goods? 

I can't see a future with this headache. Or is that my headache can't see a future with me? 

Chiropractic sessions

At my first Chiropractic session, my practitioner started by beginning to address the muscle imbalance in my body, i.e. all the knots, tightness and weak spots.

Starting on my front, he inserted an acupuncture needle into each shoulder, towards the end of the shoulder, at the apex of my arm, in places where he could find the sorest knot (and he had plenty of knots to choose from).
Acupuncture needles are used to stimulate groups of muscles or knots to move, to release into the correct position.
When he was locating a knot to place the acupuncture needle into, the knot on my right shoulder was very sore to the touch. But when the needles were inserted, and left to do their work, it was the left shoulder that began to ache around the needle. Which is just the reaction we're looking for, my practitioner said.

Whilst these needles were doing their magic, he also used a Tens machine on the rest of my back, placing four paddles in a rectangular shape (from what i could feel) from in line with my armpits to lower down on my ribs. The Tens machine itself made a lot of noise, a bit like a vaccum, but I've used a Tens machine before (when I was a kid, and played around with my mum's) so I knew what to expect. At first the machine was programmed to gradually increase the strength of a pins and needles type sensation through the paddle, and then it oscillated across the paddles in waves, diagonally from lower to upper, and across and then down again.

After the Tens machine had been turned off, and the acupuncture needles removed, he massaged my shoulder area, to "increase the muscle tone" I think he said. After some massage, he placed a towel over my shoulders, and made an adjustment to my back. An adjustment being cracking a joint that needed cracking. Ok, that is the simple way of putting it. I took a deep breath in, and when I exhaled, he adjusted my back.
Craaack.
Ahhh.

Turning onto my back, he made some adjustments to my neck. He turns my head gently, and then makes a little "impulse", which is a quick turn to that side, designed to help make adjustments. He said it doesn't always crack, because the joints don't always need to crack, but the impulses are designed to make the joints move. He did an impulse on a joint on my left side of my neck, and then on the right, and then when he went back to my left side, to a different joint.
Craaaaaaack-craaack-craaack.
Owwwwww.

It hurt a lot more, as I commented to him, than when I crack my neck. But that is because he actually cracked a joint that was stiff, and needed cracking.

Then he used his fingers hold specific areas under my skull.  I have learned that this is the "suboccipital" area, named so because it is below the "occipitus" area.
Whoever knew this would be educational as well?

As I lay there and surrendered to the pressure of his fingers, the right side began to get very sore. I lay there for a while, thinking I could put up with it, but eventually I told him, and he released some of the pressure. Ahh, I relaxed.
He repeated that for normal people, the initial pressure is quite intense, and then it tends to dissipate. Whereas mine just got worse on the right side, and did nothing on the left.
But it was when he took his fingers away, that the muscles reacted so strangely, and the sharp pain that radiated in that area made me cry out.
Argh!

"All I did was take my fingers away!"
"I knoww, but it hurt!"


Something tells me this is going to take a while...

***

Session 2 - see above, but less pain. Except for when the Tens Machine was duly making the muscles work, and the area in the left shoulder with the acupuncture needle started aching a hell of a lot, and the pain started spreading up my neck and into my head.


***

Session 3 - see Session 2, but less pain spreading up my neck whilst the Tens Machine worked with the acupuncture needle.

He also taught me how to do a "scapular retraction". Which is a fancy term for squeezing my shoulder blades together.

***
 Session 4 - see sessions 2 & 3 except this time, agony. At first, the left shoulder area had a few sharp twinges shortly after he had set the Tens machine up. He turned down the intensity, which helped hugely. But then my right started hurting, sharp stabbing pains inside my shoulder, and the left one joined in, and I almost cried. The pain seemed to come from inside my muscle and around the needle and began to spread up my neck. Oh the relief when he turned the machine off and took the needles out, especially the left one.

***

P.S Scapular retractions hurt. He said he is not surprised it hurts when I do them, but the important thing is that I keep doing them. If I didn't think this would help, I would take the same view of eating meat - I don't like it, therefore why should I do it?

***

Session 5 - no bad pain this time, hooray! Lying on my back, with his fingers on pressure points at the base of my skull, the intensity I felt at the pressure point on my right lessened. This, as my chiropractor has said before, is what happens to normal people with this treatment. I let him know how it was feeling, and how I relaxed I felt.
And right on cue, it reacted and as he took his fingers I yelped in pain.
Typical.

***

Sessions 6 & 7 - no pain, just relaxation

***

I now have a week without seeing my chiropractor, as he is away skiing. He says that we shall see how my head neck and back cope without what has up until now been a weekly session, and see if we need to continue having sessions weekly, or if we can have sessions fortnightly and then continue to space them out.