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.