Pain Positive

Turning my pain in to something positive…

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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.

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It’s getting better

It’s the 1st of March. And I’m happy about that.

It’s the first meteorological day of Spring, the day when a clear shift in the weather is due to occur. Okay, the official Spring doesn’t begin until the 21st, but I’m taking it – I’m ready for it. I’m ready to feel light sunshine on my skin, breathe in fresh spring air and prepare for new beginnings. I’ve got Pharrell Williams’ ‘Happy’ playing in my head, to a backdrop of jumping lambs, hopping rabbits and bursting daffodils!


Despite not blogging for some months, I have continued to receive personal messages from people who know where I’m coming from, and I’m grateful for them. I am aware that there are people out there looking for answers, just as I was, and I am determined to share my story in case it helps out just one of them.

I have a lot to update you on. Things have really changed for me. My pain is (for now) massively reduced, and I am back to work and starting the process of rebuilding my life. Pain cost me so much – my home, my business, my social life, my confidence, but… onwards and upwards.


The new normal?

I spend a lot of time reading about pain.  I’ve read some great blogs written by people suffering with different types and levels of pain.  The courage, stamina and grace of these people constantly amazes me.  Before I experienced chronic pain, I had no idea that there was this ‘hidden’ community of people all around the world living with and coping with pain.

A theme that I keep coming across is the acceptance of pain.  It seems a popular opinion that when you accept pain as a constant in your life, you can stop ‘fighting’ it and learn to manage it, allowing you to focus on other things.

Those of you living with chronic pain will no doubt have heard this before from your doctors, from your friends, from your own research… has acceptance helped you?

I struggle with the thought that this might be something I need to learn to live with.  My instinct is to fight.  Acceptance seems like giving in.. It means giving up thoughts of continuing to grow my business, of going travelling, of living a life that involves going places to resigning myself to a life of staying at home in bed with the odd break when pain allows me one…



My first acupuncture appointment


I had my first acupuncture treatment last Friday with Sharon Hansford.  She works within Rugby Community Acupuncture, a surgery where the practitioner can work on up to three patients at the same time, therefore reducing the cost.

Sharon is professional, personable and inspiring – she made a career change after 20 years in banking and seems to have a real passion for her work.  I was somewhat sceptical about acupuncture, but almost immediately felt that she could ‘read me’, which really gave me confidence in her.

I’m not particularly squeamish about needles, but for those who are, be reassured that they are very small!

Of course, I want to have at least 5 or 6 sessions before I evaluate it as useful or not for my neck pain, but I would recommend it – so far – based on the following positive effects alone;

           – as with my experience with the massage therapist, I found talking to someone who seems to know about what I’m experiencing to be therapeutic in itself.  In a sea of blank expressions and shrugs, talking to someone who recognises my problem is a relief!

          – as I’ve discovered – for me – it feels good to do ‘something’ rather than nothing, to take a proactive and positive step towards healing

          – the act of sitting still, of focusing on only what’s happening just in that moment was relaxing – always a good thing

I’m looking forward to exploring this more.

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Task: Do nothing

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I am a big believer in the power of positive thinking, but in a moment of complete despair after writing my last post three weeks ago – despair that this pain will never end, despair that I can’t seem to find anyone who really cares enough to want to help, despair that my life has changed in so many ways that I didn’t ask for – I decided to ‘take a break’ from thinking about it all, to try and live my life without looking for answers, without hoping, without trying… just to see if “it” might ‘go away’ on its own.  Having tried everything else, it seemed, I thought I would try ‘doing nothing’.

Big surprise – nothing changed.  Each day went on the same as the one before it, blurred into one.  I slept, I ate, I worked a little.. I slept, I walked, I stretched..

A few days ago, I decided that ‘doing nothing’ needed a little something, and I contacted a local acupuncturist. I have had two sessions so far – more on that later.  I’m definitely feeling a little more positive, though – proof that ‘doing something’ is better for me than ‘doing nothing’.

You’d be amazed at the amount of people who have suggested to me that maybe I’m trying too hard and I just need to relax and let it all ‘takes it’s course’…. well, I’ve tried that now and… nope.


Why is there no continuity of care?

I have just left my fifth – and apparently, final – physio appointment.  After some neck manipulation, I was told that “nothing seems to be working” and that I was not able to make a further appointment.  I was shocked – I assumed that we would keep going.. keep trying.. until things started to get better..

I’ve had a total of 5 sessions over 7 weeks – the first one of an hour and then the rest of 20 minutes each.  Each session was different – discussing posture and lifestyle, teaching me some exercises, neck massage, neck and shoulder massage, manipulation… nothing was tried twice.  I did not expect that something would be tried once and then given up on.  I certainly didn’t expect to have one short massage – does it ever take one massage to fix an 8-month long problem? I assumed it would be a course of treatment..

I feel like a failure. Maybe if I had been more positive about the results, said the right things… but then, I only gave totally honest reports of how I’d been during the week / how my neck seem to have responded to treatment, with the idea that honesty was what was needed to progress….

I’m angry. I can’t believe another medical professional has given up on me (yeah, yeah, I know that medics can only do what they can do, I’m not expecting a miracle worker) but more than that, I’m angry that he seemed more than happy to let me leave the room having no suggestion of where I should go next.  I had to stay seated, stand my ground and continue the conversation despite all signals that the appointment was “over”.

“So where do you think I should go next? What would you do, given your experience?”

“I’d probably see a chiropractor or an osteopath.”

“Are those things available on the NHS at all?”


“So, unfortunately, those options aren’t available to me.”


“What about acupuncture? Do you think that might be useful?”



“Is that available on the NHS?”

“I’m not sure if you’d find one locally.”


“So how do I find out?  Do I need to go back and see my GP?  Could you refer me?”

“I’ll write a letter to your GP.”


“So.. what do I do?  Do I need to make an appointment to see her?”

“Yeah, give it a week or two and then make an appointment.”

“A week or two”? Why?? Why not now? Why not somebody try and help me now??

My physiotherapist seems like a nice person.  He even apologised, as I was leaving the room, for not being able to help.  I didn’t need an apology from him.  I needed his expertise and advice, for him to see my treatment through – if not with him, then with whoever he advised me to see next.

I can’t understand why, out of all of the NHS professionals I’ve seen, not one has wanted to see my case through or ensure that I’m going ahead on the right path.  They have all seemed perfectly happy to see me leave their care unhelped and unadvised.

I’m tired.  I don’t feel like I can keep fighting for help all the time.


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Unmasking the enemy

It’s nearly nine months since The Headache began, and there is still no diagnosis.

For me, one of the hardest things about dealing with this situation has been not knowing my enemy.  Not only did I know nothing of anatomy, but I found it very difficult to recognise exactly where the pain was coming from.  When you are overwhelmed with headache and nausea and referred pain, it’s almost impossible to see through all of that to identify what’s actually causing it all.

For most of these 9 months, I had a long list of symptoms and neck pain was some way down the list.  After seeing a massage therapist, who was able to eliminate and reduce various spots of referred pain, I was able to come to my own conclusion that the source of the pain was the remaining grinding sensation in my neck and request that this be investigated further.

I still don’t know exactly what is going wrong in there.  I am waiting for the results of a second MRI scan on my neck.  I am hoping against hope that it shows nothing, and that we can then get down to working on the basis that it is caused by some kind of tension in the neck muscles.

Throughout this process, I’ve read about many possible diagnoses that I have then tried to eliminate.  Some of them have – frankly – scared me, and I still fear the diagnosis that might mean that this is serious and / or permanent.

But I feel a strong need for some diagnosis, for someone to tell me exactly what’s going wrong, to unmask the enemy, to give it a name.  I wonder if my doctors need this, too – if “it” had a name, one that they recognised, that there is a precedent for, maybe I could finally get some help?



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