“I don’t know what to do with you”. Those were the words of my neurologist during a follow-up appointment after well over 50 consecutive days of hemiplegic migraine attacks. “I’ve never seen anything like it”. Thankfully, he had read my 4-page long, fully-researched email which included links to multiple scientific papers and a painfully detailed migraine diary describing every single attack. He agreed that I should come off the anticonvulsant meds — to the utter delight of my fiancé who I don’t think knew who he was engaged to anymore. I had a glimpse of sadness as I had managed to get back into size 6 jeans thanks to the weight loss side effect of these meds but then I remembered how shit it was not to know how to tie my own shoelaces and had a word with myself. The neurologist also admitted defeat and agreed that I needed a third opinion — this time from the leading migraine specialist in the country.
I online stalked this new neurologist like you do when you meet a guy for the first time. I read all his papers, told everyone about him and developed a bit of a scientific crush on him. Like Dorothy with the Wizard of Oz, my hopes about him being some miracle worker that would return my brain to its Kansas equivalent went through the roof. I often had to be brought down to Earth by my fiancé — or simply by another attack that would leave my leg so numb and weak that I would have to drop on all fours to make it to the loo.
And so the day came and we went to meet Dr #3. And it was amazing. I learnt more in the two hours he spent with us than in the previous three months of care. And I left with a plan. A PLAN — I bloody love a plan: it has steps, you follow them and then you get the desired outcomes. In the taxi on our way back home I could already picture myself back at work and leading a completely normal life… Bless me! In Spain, we have a fable about a little girl that works on a dairy farm called “El cuento de la lechera”. In this tale, said little girl milks a cow and gets a full jar of milk. While she is walking to the village to sell her milk, she daydreams about buying another cow with the money from the sale, then milking that cow and so on and so forth… until she builds a global dairy empire. The girl gets so caught up in her daydream that she isn’t looking where she is going and she trips and spills the jar of milk. Her plans for global dairy domination evaporate.
I swear I was that little dairy girl in a former life. And although dreaming like that can be dangerous, especially when you have a complex condition that happens to have no cure, I feel the little dairy girl doesn’t get enough credit on the tale for having a goal and a hell of a lot of determination. So, inspired by my previous incarnation, I gave myself a goal: I would follow Dr #3’s plan to the letter (pat on the head optional) with the aim of being well enough to last through my entire wedding party at the end of May. Nothing more, nothing less.
From that day on, I ran my life like the movie Groundhog Day as I’m told that “change is the enemy of both migraine and burnout”. I exercised five times a week to build lean muscle, and on days when my brain and body were struggling I forced myself to at least get up and go for a walk along the Thames. I kept a food diary and followed a macronutrient-controlled diet that eliminated caffeine, processed foods, alcohol and basically all the bad stuff that tastes oh so good. I meditated every single day. I went to bed at the same time and tried to sleep eight hours a night — no more, no less. I became a better guardian of my time and didn’t run around London meeting people — I asked them to come to me to preserve my energy. And I did some little projects to keep my mind active but not overloaded and give my boring and lonely days some purpose. I will write “burnout lessons” posts about some of these to explain them in more detail in the coming weeks but, in a nutshell, I just did all the commonsensical things you would do to give a hypersensitive brain and an exhausted body the best possible chance to heal. This time I smashed resting properly, not like the first time around.
And although my condition didn’t change at all and the attacks would still hit me every single day, I felt like a different person. Better still, I felt like I was back and the scaredy-cat, sad version of me that got lost in Oxford Street was nowhere to be seen. I faced the next batch of hospital tests in a much better frame of mind and perhaps started to accept that, even if my brain was to stay like this forever and I couldn’t return to my old job, I could still have a happy and fulfilling life — not the one I had planned but a different and maybe even better one.
The time came to see Dr #3 again and he confirmed the severe persistent hemiplegic migraine diagnosis, cleared me of having anything more sinister and said I had become the model patient with all my lifestyle changes (boom — gold star for me!). He also wanted to try something slightly more experimental on my brain since drugs hadn’t been my friends before and I agreed. I mean, who wouldn’t want to blast their brain every day with a portable, magnetically charged helmet instead of taking some pills with manic depression and Parkinson’s-like tremors as side effects?!
10 days later, the helmet arrived. I’ll tell you how I got on with it in the next chapter!
Much love and cortisol,
Paula (Instagram: @_burnoutgirl)
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Originally published at www.huffingtonpost.co.uk on May 10, 2017.
Originally published at journal.thriveglobal.com