This question is meant to be a conversation starter, a formality. The answer is meant to be “good, thanks, you?” or “fine, thanks” or “great, you?”. It is also socially acceptable to say “I’m tired, I need a coffee” or “meh, I’m looking forward to the weekend though” or “Shit, my boss is an arse”.
What about if the answer is “I don’t actually know how I am and... I haven’t been able to fully open my eye for three months. Sometimes my hand or my arm feel weird and a bit weak. I’m getting out of breath more often than normal. I’m spending lots of time with doctors- and not in the way I wish (wink wink)”.
Well, behind every “I’m fine, thanks” this has been what I’ve really been wanting to say. I’ve tried it out on a few people. But then I don’t like the pity reaction. I also can’t be bothered to answer the same questions a million times because, erm, effort, so I’ve decided to be lazy and unsociable, and write a blog post. This is it. If you love me, please get to the end. It would mean the world to me.
In December last year, I decided it was time to do two crazy things.
I was to sell my boat and leave the water after an amazing (and mad!) 5 years. And, secondly, I was to leave my loving second home that was ustwo adventure, and move 23 Code Street to its own office. I think it’s an understatement to say the boat selling was stressful, but the office signing was exciting, but nerve wracking. In the process of all of this, my right eye started to close.
First, I joked about it. My go to when people asked what was going on was to tell them it was a side effect of singledom called “flirtitis”.
I often told people I was just incredibly tired or that I needed glasses (which the people at KITE then prescribed me, wrongly, but that’s another story). Then, one evening, my vision started to go double and I texted my friend who works at Moorfields eye hospital who told me stop being an idiot and get to A and E at Moorfields. Long story short, after a lot of tests, one of the doctors said he thought it was Myasthenia.
Myasthenia Gravis- Myasthenia gravis, which literally means grave muscular weakness, is a rare long-term condition that causes muscle weakness that comes and goes. It most commonly affects the muscles that control the eyes and eyelids, facial expressions, chewing, swallowing and speaking. But it can affect most parts of the body. It can affect people of any age, typically starting in women under 40 and men over 60.
Cheers www.NHS.uk for the definition- legit such a good website.
I got a bit emotional. He was like, “Oh, do you know what that is?”. I was like lol yeah, I’ve grown up with it. My mum has it. Weirdly though, It’s not meant to be genetic. I’m an unusual case, my consultant told me recently, before she asked me if they could have my blood for research. I’m adding lab rat to my LinkedIn profile.
Fast forward three months (that’s how long it took to get seen by a neurologist- they wait that amount of time to see if your condition worsens) I’ve been officially diagnosed, I have one of the best consultants and MG (this is what people in my cult refer to it as) researchers in the country. Also, I get to go to one of the best hospitals with the best view- St Thomas’ at Westminster. I also get peng brunch afterwards courtesy of my partner in crime, Thomas Salmon, who comes with me to every appointment, who is the best friend I could ever ask for, and who also takes shit photos of me to send to my parents. Please see below for evidence:
The medication I’m on is incredible. Within a day my eye was back to normal. Yep, I cried. And the other stuff is starting to improve. The side effects of it are sickness- every time they up the dosage, I get a day in bed, or on the bathroom floor, to watch a movie from my long list of unwatched movies. Speaking of which “The Big Sick” is, erm, sick!
So, why am I writing this?
Bcause I need everyone around me to understand a few things:
The first- what does this mean for me? Well, a couple of short term things. The medication could carry on making me sick for a while. I also need a few more tests- the one I’m most worried about is the MRI which will be used to check out my thymus gland. If it comes back that I have an overactive gland or that I have thymoma (a tumour which can be benign or malignant) then I will have to have an operation. My mum had it. The long term things are that I will need to learn to live with it. I could go into remission for years and then a stressful period, or hormonal change (nah bruh, I ain’t having kids nor menopause) can bring effects of it back on.
I’ve turned down a lot of public facing gigs since the beginning of the year because I was embarrassed by my eye. I didn’t want people who didn’t know me to describe me as the brown woman with the flipping great shoes and dodgy eye. Although, stupidly, my dodgy eye did end up on the homepage of the Guardian! So much for keeping a low profile :/
Worst than that though, I’ve avoided most of my friends. Especially back home over Christmas. I’m sorry and I love you all. I know you would understand, but I wasn’t ready. Speaking of which, this came through my front door from my favourite Aunty ji’s at The Other Box…LOVE YOU.
I stopped picking up the phone. I am still not really picking up the phone. I don’t know how to answer the first question I’m asked- “how are you?”. I’m hoping this post solves it.
I’ve had to spend a lot of time away from doing the work I love. There have been times I haven’t been able to read my laptop or my phone screen. Days when I’ve been too exhausted to get past 3 o’clock. I have to thank the incredible team I have for doing so much without me. I owe them everything. So, if I’m being more useless with responding than usual (I know, who knew that was possible?), this is why.
I’m coming to terms with things. I have days where I’m happy as Larry, and I feel normal (whatever that means) as ever. And other days where I’m processing. Where I don’t want to get out of bed. Or, actually, where I’m angry that I have an illness for life. This is all part of it. It’s only been a few weeks of proper diagnosis.
I have an illness that is super duper manageable. The medication and treatment now, compared to when my mum was diagnosed 40 years ago, is incredible. Also, my mum’s in remission, so that’s cool. I have been incredibly impressed with how I’ve been treated. Theresa May can F off. The NHS are insanely wonderful. I’ve been seen by 5 doctors in two weeks. They’ve all been so friendly and loving and caring, and they’ve got me sorted so quickly. If you have anything bad to say about the NHS, I don’t want to hear it right now. They’re making my life manageable, more than manageable. I feel very privileged to live in London.
This year is going to be the best year yet, work wise. There is so much in the pipeline. My DMs and inbox are open again- I want to get out and go to events, and do talks and panels and write and everything, again. I’m just going to have to be a pro at stress and sleep management.
Finally, and the most important reason I am writing this is this- yes, this is hard. But it could be so much worse. I’m incredibly healthy, Alhamdullilah, which is making it all so much easier. So, please, don’t pity me. Or feel sorry for me. Or not ask me to come on a night out, or event, or anything because you’re concerned. Or look at me funny if my eye starts to close again. Deal with it. Use humour. Tell me I look like a tw*t. I don’t mind questions- in fact, I’m hoping this has brought about some MG awareness.
Oh and finally, finally- if you see me eating chocolate, take it away from me! I’m all about the hot water and chill vibes now ✌🏽
Really quick thank you to my lovely family, to my wonderful house mates Tom and Joe, to everyone at 23CS, to Lady Grey (because she’s really who is keeping me sane), and to Thomas. Thanks guys for dealing with all my nonsense.
If you want to find out more about Myasthenia Gravis, My Aware is the only charity in the UK dedicated solely to the care and support of people affected by myasthenia. They have tonnes of info and resources for all you nerds.
Thank you everyone for the incredible love, warmth and support. I’ve been overwhelmed by the amount of people who have called me a tw*t- it’s greatly appreciated. I wrote a follow on piece about having to have surgery. You can read it HERE.
Big Love ❤