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