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.
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