Brain fog

Needed to say something. Can’t seem to remember what. Don’t know what I lost.

Reblogged from An Unfiltered Monologue.


Hula baby!

An osteopath that I saw in 2013 suggested that, when I get shoulder / neck / back aches and pains, I should try hula-hooping.

That look on your face right now – that’s what I did, too. “Is this guy kidding?”

But two years later, my crazy-coloured £2 hula hoop still gets pulled out when I have the odd ache, and it works faster than taking a painkiller.

When I started hooping, I couldn’t manage more than a few seconds at a time before it hit the floor. Now I can go several minutes in spin-mode. And I admit that, when at work and feeling a bit achy, I do the hula hooping motion (in private!) to help me get through the day.

It also has the added bonus – when doing it regularly – of very quickly tightening up your belly muscles. The repetitive hip gyrations help strengthen your core muscles. And you can’t help but feel good and positive when doing it.

Has anyone else benefited from hula-hooping? Or something equally wacky?!

It's obligatory that you look this happy when hooping.

It’s obligatory that you look this happy when hooping.


What I learned about living with pain from… Frozen

Let it go, let it go….!

Note to self:

Let go of other peoples opinions.  Let go of trying to convince people who don’t want to be convinced that you’re ill. They’re not going to help, it’s a waste of energy.  Move on to discussing it with those who will.

Let go of the people who have no patience for your headache.  Time is short – spend your now-all-too-valuable energy on cherishing those who do.

Let go of worrying about the time stolen by your pain. It’s done, it’s gone. Move on to thinking about the future, and appreciating the (sometimes restricted, but always precious) bits of time you do have to enjoy life.

Let go of the wishes that won’t come true, and that constantly disappoint (for me, that I’ll wake up one day without a headache) and put your effort in to what is practical, what can be done, and move forward.

Have you Let Go of anything?

The cold never bothered me anyway!

let it goPain-Positive-Tag1

There’s nothing wrong with you..

I had a follow-up consultation at QEH, Birmingham.

It was the familiar ‘ushered in, ushered out’ kind of appointment. I felt decisions had been made before I entered the room. I was told that my last MRI scan showed “Good news! There’s nothing wrong with you!”

Hurrah! So I can skip out of here pain-free and return to my carefree, headache-free, study-filled, fun-filled life? Brilliant!

“But…,“ I said, “that IS good news. I’m glad that the MRI showed nothing serious, but.. I still have a headache. I still have almost constant nausea. So what are we going to do next?”

The consultant – having barely turned his face towards me to take his eyes away from his screen, spinned on his chair back to face the wall and said “This is good news, there’s nothing wrong, and therefore we don’t need to take any action.”

The room fell silent as he waited for me to leave.

I didn’t.

Disbelief. My throat tightened and my eyes began to well up.

“But there IS something wrong with me – I have a headache…,” I said quietly.

Sighing, he turned towards me, and repeated “We can’t find anything wrong. I’m afraid there’s no more we can do for you”, and gestured towards my coat and bag on the floor beside me, turning his chair back to the wall.

A student entered the room, coming in to what must surely have looked like a strange scene of a patient sitting dumb-founded and a doctor sitting with his back to her.

“So will I see you again?”

“That won’t be necessary”, he said to his screen.

I stood up, taking my coat and bag, and left. I did not thank him for his time. I was fuming. I walked back to my car and cried.


Yup. Again.


The story of my headache

I have finally got around to putting all my notes together and creating a timeline of my headache so far.  For those of you who are interested – and maybe want to compare notes – please see the ‘My Story’ page.  (Up there on the top right corner, see?)Pain-Positive-Tag1

What colour is your headache?

I came across this – possibly black magic – video recently.

How does this work? Well, I don’t really know, but this is the way I see it.

Pain is like a car alarm.

Your body is alerting you to the fact that there is something wrong.

Just like a car alarm alerting you to the fact that someone may be breaking in to your car – that you need to take a look and take some action to resolve the situation.

Your body is telling you that there is something wrong that you need to take a look at and resolve.

So maybe once you address the alarm, your body doesn’t need to warn you any longer…?

What do you think?

My inner toddler

Warning: self-pitying ahead.

I just got back from a hospital appointment at the Queen Elizabeth in Birmingham. It is now 2 and a half years since I developed The Headache. I have spent the last few days in bed with overwhelming nausea. I’ve been in this state of constant travel-sickness for about a year now. It’s getting boring.

I had been referred to QEH by a GP in Rugby who has a specialist eye clinic (I must write more about that, I am so out of sync with my blog, but it was a really good consultation that must be praised at some point). This morning, I saw a lovely registrar who did all his optome-tricks, and concluded that my left eye is moving slightly slower than my right when following an object horizontally. This backed up the GP’s conclusions. He ended with telling me that the consultant would explain it all.  I was excited that I seemed to be close to a diagnosis.

The consultant was the by-now immediately-recognisable type who looked more at his notes than he did at his patient. I am not ungrateful. I appreciate the NHS, I appreciate the skill of the medical professionals who see me, I appreciate the time pressures they are under, etc etc etc (and there really is a lot of “etc”, I am GRATEFUL). However, this was another frustrating consultation. I am well aware by now that a consultant who makes you feel listened-to is a rare thing. He seemed to be dismissing the idea, despite it feeling like everything ‘fitted’, that this left eye movement problem could cause the symptoms I was describing. He asked me leading questions.. leading towards a diagnosis that was moving away from this theory.

He asked me to describe ‘travel sickness’. How do you describe travel sickness? I tried – I explained that it was a sick feeling in the pit of my stomach, that my head was swimming… He asked me to describe the swimming… I struggled. He wanted to know whether I felt unbalanced, unsteady. I said that it wasn’t a movement problem, I did not feel dizzy or that I was off-balance, more that the feeling of ‘swimming’ was in my head… He asked if it looked like the room was moving. I said no, it was an “inner” swimming. He was unsatisfied with this and concluded, despite my protestations, that “things appeared to move around me”. It was as if he was trying to get me to ‘match up’ with a diagnosis that he had in mind, one that I wasn’t privy to. I felt frustrated.

He suggested that I have another MRI scan, seemingly to rule out any issue with my left eye movement. And then, he said, he would refer me to another consultant in London, one who specialises in the connection between ears, eyes and brain. He wants to go down the route of looking at the vestibular system. Of course, I am in no position to argue. But I am so frustrated that I went there today hoping (finally) for confirmation that I have a problem with my left eye movement so that we could talk about how to treat it, and move forward… Now I am left with more questions than answers again, and another consultant who doesn’t seem to recognise what my problem is.. [I expect that if the consultant were writing his account of what happened today, he would feel equally frustrated, maybe for different reasons.]  I feel further behind than I did before. It feels soul-destroying.

The worst part of the consultation was when he concluded that things are “not so bad” because I am “much better off than I was a year ago”, and that I am “getting on with life”. It felt like he was really saying “there’s not TOO much wrong with you, so this won’t be a priority”. I felt like crying. I felt like acting like a two-year-old and saying “YOU try living with constant nausea for two and a half years, to be self-employed and limited to no more than half an hour work at a time, to no longer be able to do so many of the things that used to bring you happiness, to lose your home, your social life, your confidence and any sense of direction in life because all you can do every day is just get through that day (sometimes by sleeping it away)… and then tell me I’m ok”.  I didn’t, obviously. I thanked him for his time, and left.. feeling hopeless.

These consultations so often leave me feeling like a failure, that I haven’t SAID the right thing, or fought hard enough, or done.. SOMETHING right.. I don’t even know what that something is.

And I KNOW I sound like a brat. I KNOW these doctors work hard.  I KNOW there are people far worse off than me. I KNOW all that, but it doesn’t help me. I am a generally optimistic person who lives every day in gratitude for all the small things. I don’t complain. I barely even talk about it, I just keep my head down and work through it. But right now, I feel low and helpless.

I need help, and I just can’t seem to get it.