A Naughty Mnemonic 

Last week while contemplating my ongoing anxiety and the various tools I’ve learned to help manage it, I wondered if I could conjure up a mnemonic to cover all the steps I follow when feeling panicky. It’s easy to lose myself in these moments so anything to keep me moving in a forward direction is a very good thing. 

Thankfully, my brain obliged and this is what I’ve come up with. 

STOP and reflect on what’s happening. Consider actual facts, like what you can see, hear, feel, smell. Step outside of the panic and look in from a different angle. 

EXPRESS your feelings. Don’t try to push the worries down or repress your emotions. If necessary find a safe, private and comfortable place to do this. It’s ok to cry and ok to feel totally shitty and hopeless. 

ADAPT. Adapt to the situation. If something has triggered the anxiety, consider whether you can do something differently that will make it easier. If work is triggering panic, book some time off, or reduce your hours, or go to bed earlier. Have a think about practical steps you could take that will lift the weight from you. 

CARRY ON. This one is important. Remember that life will continue. This moment will pass, and normal service will resume. Prepare and expect to move on from this. 

Be THANKFUL. Reflect on what’s good. What you’ve overcome, what makes you happy. 

Ladies and gents, when leaning into a panic or feeling anxious, remember to perform a SEX ACT. 

Even thinking about the mnemonic itself makes me smile, so that’s got to count for something! 

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A Fracture

I’ve had a frustrating summer. In July I fractured my ankle while trying to relive my youth and participating in a ‘school sports day’ my friends and I arranged. Sack racing, egg and spoon, assault course – all went smoothly (though confirming that I’ll never be an athlete) but the rounders match at the end finished me off. Running to the third base in a race against my (6’4″) brother in law trying to catch me out; crash, twist, ouch. 

In the months since then, I have found myself challenged not only by the pain and inconvenience of the fracture but by having to face up to disability in general. I’m fortunate in that so far, relapses have been fairly few and far between, so I can pretend, between episodes, that I’m fine. I can pass, and I can go through days without having to think about my illness. 

With no weight bearing allowed on my ankle, the six weeks in a cast necessitated the use of two crutches. With both hands in use, I discovered that I couldn’t move and carry something at the same time. Some things I could fling in a rucksack and carry on my back to the next destination but cups of tea were trickier. 

Getting around was very difficult. I thought I had good upper body strength but nothing prepares you for lifting your full body weight for any amount of time. Suspending the bad leg with knee bent so my foot didn’t touch the floor gave me groin strain and made my thigh ache. On one occasion I hobbled about 100m, sat on a wall and just cried because it hurt so much I couldn’t go further. 

Bathing was a challenge. I bought a cast cover so I could submerge my leg and then realised that actually getting in and out of the bath, and risking slipping on my good leg, was too dangerous. Flannel washing while sitting on a stool gets old very quickly. 

I am very lucky to have a wife and two flatmates who have supported me patiently throughout, done my share of the cleaning and cooking during this time, and helped get me to the park for some air when I went stir crazy. This has been a temporary situation, to which we have adapted, and soon it will be over. I’m walking again with weight on both legs, and down to one walking stick. Things are nearly normal again. 

It has buzzed constantly in the back of my mind over these months however, that the struggles I’ve had recently – both the physical ones and the guilt and shame I’ve felt for not being independent or able to pull my weight, for needing help – are likely to resurface again. Where someone without a progressive illness might be able to draw a line under a broken ankle and assume that going forward, everything will be ok, I have spent a hideous amount of time ruminating on the fact that in the future, I will almost definitely end up feeling these feelings again. 

I’ve always tried to wrap up my thoughts neatly when I write, and to come to some useful conclusion. But on this, I’m still wide open. I know that in the future my wife, friends and I will adapt to challenges of all kinds; I know that needing help is OK, that total independence isn’t the most important thing. I know that people with all kinds of disabilities live fulfilling, exciting and engaging lives – I gorge myself on these narratives. But I’ve hated feeling like this even for a short time, and I’m shit scared about it. I’m shit scared about a time in the future when I might not be able to cook dinner because my hands don’t do what I want, or when I need to ask for help getting to the toilet in the night. What can I do but keep going, hoping and adapting? 

Dear Newly Diagnosed Self

I’m sorry, but there’s not much I can say that will make it easier or less scary for you right now. I know the first thing you’ll want to know is what the hell multiple sclerosis even is anyway, since you weren’t prepared for this – these words weren’t on your radar. If I did have one piece of advice it would be not to use Wikipedia as your source of information. Get your friends to research it for you – it’ll inform them and help prevent you catastrophising. Imagine how the internet would describe in words what love feels like and compare it to your own experience. Exactly.

What you will find out over the next four or so years is that understanding and growth can only come with experience. The experiences you have will be bitter and sweet, but in equal measure. I’m afraid I can’t explain to you in advance what your body will feel like, or how you’ll respond emotionally and I know this will drive you mad as you’re such a massive control freak. But I promise that every difficult moment will pass, you will learn to be patient and you will discover wonderful things you’d never have known otherwise. You won’t appreciate it in the thick of it, but your people will support you and love you more than you’d ever have expected. You won’t drive them away and they will not get bored of you. You will investigate yourself and find prejudices to address and opportunities to educate yourself in disability activism, assistive design and other cool stuff. You will stop making assumptions about other people and treat everyone with more care and caution and patience. You will start to do the same for yourself. You will develop a better understanding of what anxiety feels like and you’ll be able to support other people who struggle with it. This stuff could have taken you a lifetime to learn without MS.

You have no idea what’s coming – I still don’t – but that’s OK. Whatever comes, know that while for a short time it will feel horrible, it will pass and when you come out the other side you will have something good to show for it.

Letter to The Maccabees

Dear Hugo and Felix

Last night I was invited to meet you backstage before your second sold out date at Brixton Academy.

I was invited by Lee, Celebrity and VIP Supporter Manager for the MS Society, who called out for fans associated with the charity who’d like to say hello and see you play, because you are big supporters of the cause.

Before the gig, I had heard your music but I didn’t know about your connection with MS. Lee sent me the Sunday Times article where you opened up about your mum and her illness, and I was very moved. You guys have had a really tough experience and I’m immensely grateful that you shared your story.

I have MS myself – that’s my connection. I recently joined the local branch committee and am learning to turn my inward facing fears into outward facing good. That’s where my energy comes from – I’m often scared and uncertain, and giving is the only way I know how to make it worth something.

As my wife and I waited for you to come on stage I thought about the other volunteers attending the meet and greet. Each had a different reason for being there, several with parents or friends with MS. I’m involved in all this whether I like it or not, but they have chosen to support the charity because they love someone with the disease.

Reading about your mum, and seeing the effort that you and others go to to raise awareness and money for MS Society made me realise just how much my illness affects my friends and family. It isn’t so much my MS, as ours.  I’m the one with the wobbly legs but it impacts my wife, my family, and friends and we all deal with it, together.

This realisation lifted me up, as I felt the support of a whole room, and later when your massive crowd chanted back to you with their hands in the air I imagined the support of all of them as well, extending to you and to me. The braver folks crowdsurfing stood out as a symbol of what I’d learned.

I’m very grateful to have met you all – you are lovely guys, and I want to thank you again for taking the time and energy to meet us personally and for all the fundraising and awareness work you do.  Your mum would be proud.

Emm

ps. You played an utterly brilliant gig – I’m off now to download your back catalogue…

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Drums

I’ve been drumming since I was 15. I played guitar first, but when I wanted to start a band there seemed to be a surplus of guitarists, so I decided to learn a different instrument. Drums were the perfect fit, and I found I had a natural rhythm and (despite how it might appear on the dancefloor) good coordination.

I’ve been in a bunch of bands since then, playing everything from emo and post rock to blues and disco. Anything with a good beat: I’m in.

Eight months after my diagnosis I took part in a Guinness World Record breaking event called Stick It To MS. 798 drummers, each with a full size drum kit, gathered together in a massive warehouse in Manchester and made a bloody racket, raising funds and awareness for the MS Society.  It was perfect for me. At a time when I felt scared and lost and uncertain, the event gave me the opportunity to claw back some control and to Do Something. It gave me something practical to focus on, and my fundraising page became a convenient platform for sharing the news of my diagnosis with friends – giving them a chance to Do Something instead of just feeling helpless. So I threw all my weight behind it and (with much help from my amazing friend and fellow MSer Betti)  ended up raising the most money on the day, winning a shiny new drum kit and a trip to the Marshall amp factory.

Skipping forward to a few years and several bands later, my music and my MS have collaborated again.

Most of my days are good, but unfortunately on bad days some of my symptoms affect my ability to play – weak arms and legs give me less stamina and pedal control, numb hands can make holding sticks a bit awkward, tingles when I bend my neck and balance problems can make just sitting behind the kit a bit more challenging.

I was forced to quit a band a couple of years ago when a tough few months left me unable to rehearse. It was a very upsetting time and it was hard to shake the thought that one day I will have to give up drumming for good.

Thankfully my common sense (and stubbornness) prevailed and I saw a solution: electronic music.  I’ve always been massively into trip hop and electronica, but hadn’t ever pursued it as a musician. I decided that if my body was going to keep letting me down,  I’d have to work around it, so I searched for someone to make electronic music with. Electronic drums, machines and sample pads give me much more flexibility – I can use alone or alongside my acoustic drum kit if I want, they are much less physically demanding and I can rely on loops and pre-recorded parts as and when needed. I’m not putting down my sticks any time soon.

My MS has very really altered the trajectory of the music I make. And actually it sounds pretty bloody good.

Why I’m Buying A New Walking Stick (When I Don’t Use One Every Day)

I bought my first (and currently, only) walking stick a month or two before I turned 30. It was amid the first relapse since my diagnosis – one I’d been waiting for and when it arrived, scared the shit out of me.

Half of my body suddenly felt numb, like it had disappeared. At my insistence, as a terrified novice, I was prescribed a dose of steroids (not a course of action I’d necessarily push for in future unless absolutely necessary) which left me weak as a kitten and unable to walk far without getting tired and floppy, taking the arm of whoever I was with.

My dad suggested buying a stick. My parents are wonderful, supportive humans, and both being from a medical background, they lean toward practical ‘solutions’. I was pretty resistant.  A lot of wailing ‘but I’m not even 30 how can I  need a walking stick?!’. Dad argued that it was temporary, like using crutches when you have a broken leg, and that if I needed to hang off an arm, a stick would probably be sensible.

So we bought a folding stick. There were a range of colours and styles available at the chemist shop we bought it from but I opted for the basic, black and chrome. The one that looks temporary, or NHS issue. I chose it because I didn’t want it. I didn’t want it to advertise that I am ill.

I don’t use it all the time – thankfully my legs recovered fully from the relapse and worked normally again after a month or so. I use it from time to time when I feel wobbly – my balance is very hit and miss and I often experience ‘jelly legs’ where I feel like my knees might buckle and my calves give way. Mostly though, I keep it in my bag for confidence. To know it’s there when I need it makes me a bit less afraid of a repeat episode; a crutch and a signal.

As the year following my relapse has progressed, I have become quite fond of my stick. Where I’ve used it, I’ve been strengthened by the response from the people around me. The more space, patience and consideration I have received from others, the more I have been able to buy into the idea that I deserve it and that it’s ok to need it. Testing out my stick, which I initially hated using, has turned out to be a massive catalyst for accepting my disease and being proactive with self care.

And so, I’ve been looking into buying a new stick. One which I can be proud of, to signal my acceptance and to make it mine.

EDIT Jan 2016: Here she is! http://www.topandderby.com/collections/the-chatfield

 

Fuck MS #638

Today is my four year MS diagnosis anniversary. To celebrate, I have cooked us a dinner of things beginning with M and S. We have sausages and mash with spinach. And melon, M&Ms, Skittles, Maltesers and Magic Stars for dessert. Bought from M&S.

Fuck MS.