So I'm trying this new diet. But it wasn't my choice.
(writing this is cathartic, I won't deny I'm a bit scared about this coming week)
Some people get massages to make themselves feel better - good choice. Some people go to the gym and others just lose their temper. Me - I write.
My chronic/daily migraines returned to being really frequent and really severe a few weeks ago. My botox (2nd session) was wearing off so I went back to see my consultant neurologist yesterday for another 40 injections of the stuff in my faces, temples and crown and neck. Being pretty much confined to the house was the start of the diet - a diet of friends, of life, fun and freedom. Although I haven't really missed the sunlight (ouch). It was the kind of diet that filtered friend from acquaintances, the selfless from the self-obsessed. It made my ever-suffering chap get a bit sick of trailing around after me (carers need support too!) It made me rethink our wedding and question our guestlist. Oh and get a bit angry.
What would you do? Take more painkillers, stronger ones?
I've been reducing my painkiller intake for a while due to suffering from medicine-overuse headache (also known as rebound headache) - caused when the user takes too many painkillers - it actually makes your headaches/migraine worse and signals addiction. If you've read my blog before you may remember that I was almost hospitalised in March to be weaned off my medication and wired up to a load of drips for a few weeks - I narrowly avoided this and womaned-up, I pulled through myself with a few days off work and the support of my fiancé.
Now I take about 10 a month when before I was popping them daily (and several times daily) - nobody needs that amount of medication in their blood or brain but that's really how bad chronic migraine is. If you could live a normal life propped up on medication, you would, but I've had to be strong.
The second part of my diet started about a week ago.
I started with the most horrendously painful shooting pains up one side of my face - when eating, drinking, smiling, or the one occasion I put on a bit of make-up. It keeps me awake until the early morning. No painkiller touches it, not even dihydrocodeine (which of course I have to be super careful with because of rebound headache).I've been having some dental work on so assumed that was the trigger.
A visit to the dentist have a good look in my mouth and a good bash at my teeth - nothing wrong with them. My issue was likely to be trigeminal neuralgia, a rare form of neuralgia and typically unlucky of me, the most painful kind. She wrote the illness name on a post-it with a drug name to give to my GP.
I saw my GP the next day who doled out the medication (carbamazepine) with little questioning. I didn't touch it though - I was seeing my neuro the next day (yesterday) so rocked up at The National Hospital of Neurology and Neurosurgery with my little prescription bag and my latest migraine diary.
One look at my migraine diary (a 1-10 number representing pain scale, 1 being practically normal, 10 being unbearable-get-to-A&E-now kind of pain). saw him confirm that botox had been helping me (this I didn't believe last time I saw him but migraine diary pretty much confirmed it). Then I told him about my dentist-doctor diagnosis of trigeminal neuralgia. He looked at me as if to say 'bollocks is it TN' but after some questions of symptoms, pain type and stuff, he said 'yep, that's trigeminal neuralgia'...
Damn. I'm REALLY gonna struggle to train for the London Marathon even more :/
I'm 32. WTF. It's incurable and can be a chronic illness (yay, another one :S). He wanted to see me again in a few days for an MRI and to see me later the same day for my results. Apparently it's one of the most painful things that can be medically-wrong with you The trigeminal nerve runs in your jaw, your cheek/nose and your forehead - and no, I'd never heard of this until I had it.
There's a 60% chance I'll need brain surgery - and that's the best outcome. WTF. Before this looks like a 'woe is me' post, keep reading...I'm just spouting facts for awareness.
There's a chance it could be a tumour/growth, and there's a chance there'll be no cause indicated on the MRI meaning we have to manage it with medication. TN comes, then goes away for a few months, then comes back again for another few weeks/months. I'm trying to not think about experiencing this much pain for the rest of my life, the daily migraines are bad enough. And migraine is such a goddamn boring illness to have!!!!
Today I've been drinking lukewarm coffee through a straw, and soup. Oh soup, you are epic. This is why this diet is so good - you can't really consume much without it triggering another lightning bolt in the cheek! I also had to WhatsApp my boyfriend in the same room because I couldn't talk. So he's happy the house is quieter
Now, this is a whole new load of shit to deal with. My neuro isn't even bothered about my migraines atm - he administered the botox so that will control my head pain a bit better whilst we sort the TN out.
What did I do in a past life to deserve this?
Still, there ARE people worse off than me, and instead of wallowing myself into the ground about 'why don't my friends care?' and 'why do people not just simply reach out with 'how are you feeling today?' instead of posting selfies and photos of their next meal to social applause, I am going to surround myself with people who make me happy. The people who bring out the best in me. I'm going to focus on filling my heart with love, helping those worse-off than myself, on finding new things to enjoy whilst on house arrest, do some fun wedding things from my day bed.
Some of my friends with pain and affliction are becoming my daily inspiration and I hope to become theirs. Maybe sometimes we need to hit rock-bottom to bounce back up but my sore brain will find relief and contentment away from drama and bullshit.
Last night I read a post about a headache campaigner - I always thought she was a sufferer because of the sheer determination to raise awareness. But no, her dad has cluster headaches and THAT is why she campaigns. Selfless love is beautiful and she is such an inspiration to us all. My heart was so warm after reading her story.
This morning I woke up to a photo posted on my Facebook wall from a friend with the message 'just reminding you we're here for you'. It was so sincere and thoughtful. Good friends and good family fight for each other, they share battles and raise awareness.
Some people don't know how to be with me and you know what? Neither do I. We're all learning, we didn't choose this life but we work with the cards we are dealt. By reading this, I've raised awareness of chronic migraine, trigeminal neuralgia and depression - and so have you (thank you).
The people I have met on my chronic migraine journey are the strongest I know. They are amazing, inspirational, strong and infinitely selfless. They understand this 'left-behind' feeling I have when, naturally, real life is happening for other people. But you don't have to have migraines to be a good friend to someone who has them. It also turns out that someone I know has TN too - and I'm really looking forward to growing that friendship.
Sadly I know there are people out there who scoff at my whining, who don't want to understand, and who can't see past the end of their noses about what goes on to other people. You know, the kind of people who do a bit of charity work and then post everywhere about to get a load of credit from their mates, using that to reassure themselves they are a decent human being.
That's the third part of the diet - relieving myself of fairweather folk.
If you consider yourself a friend of mine, I am grateful to you for your support, letting me bend your ear, and your friendship. Hopefully my story won't get any darker but until then, my focus is learning to dance in the rain because there's a storm going on in my nervous system.
I am not my diagnoses and there is so much more to me than this, it's time to pick myself up off the ground and show it because nobody can make me feel better apart from myself and the life I curate around me. I just might need your help to get there.
Hell, it feels better to write this all down!
P.S. If you do Google TN you'll probably read it's called 'the suicide disease' because of the pain and its effect on life. I am not going to be one of those statistics