Tuesday, 19 May 2015

I am a disabled musician.

When I'm not grumbling on the Internet or attending a plethora of medical appointments to discuss all the ways in which I am a mutant, I'm also a musician. I sing (solo and in choirs), I play the piano, and I "play" the guitar. These are the things that give me the greatest pleasure in life. I make music in a variety of styles, from folk to classical to punk, and I consume live music whenever I can.

Making music with EDS is not without its challenges, many of which I've only recently recognised and begun to navigate. First, and perhaps most obviously, I can't stand up for long periods of time. I persevered with it until early last year, when I had to leave a gig I'd been really looking forward to because I was in so much pain. Choral concerts are agony - in April, my choir did three concerts in three weeks, and it took me almost three more to fully recover. The other day, I had to leave rehearsals earlier when the weak muscles in my lower back refused to support the weight of my upper body. My solo efforts as a classical singer have been put on hold.

There's also the not inconsiderable problem that my fingers dislocate - most noticeably the pinky finger of my left hand, which has subluxed consistently since I was a child and baffled all of my piano teachers. More recently, my fingers and wrists have become more unstable and painful, and in combination with the need to sit upright in order to play, my music practice has been substantially limited.

In autumn/winter 2009, I was a member of a choir that required all black as concert attire. In a church, this is generally not a problem, but in a concert hall with strong lights pointing at the stage, where you're surrounded by 49 people who are also wearing black, you start to swelter pretty quickly. For large scale choral works, you also spend a lot of time sitting or standing very still. This meant that I ended quite a few concerts not singing and instead concentrating very hard on staying conscious. I changed my concert dress slightly and thought nothing of it for a while until last year, when the blackouts started coming back and my amazing fount-of-information friend suggested I might have some manner of autonomic dysfunction. If you attend one of my choral concerts and notice that I'm swaying, frowning, and not singing, you'll know I'm about to pass out.

It's not all doom and gloom. I'm certainly not about to give these things up, because my life would essentially be pointless without them. But thanks to renewed input from friends and clinicians, I'm starting to make and ask for adjustments that will hopefully get me back up to the standard I have always aspired to. My current singing teacher is also a yoga teacher, an anatomist, and I suspect that she may also spend evenings wearing a cape and fighting crime, and she's helping me build a practice regime that will strengthen my core as well as developing my technique. My choir have been very supportive in allowing me to stretch at intervals during rehearsals, leave early if the pain gets too bad, and look into acquiring a high chair I can use for concerts. I've got myself some finger splints, and I'm hoping they'll help me practice without pain until I've found out how to strengthen my fingers.

None of these are things I'd have discovered without input from peers, or some degree of research or initiative on my part. What I'd most like to see in music teaching as time goes on is a greater drive to increase access on the part of teachers and professional musicians to make music accessible and to make disabled musicians visible. Fortunately, there are people and organisations working on this right now, and I'd like to take this opportunity to give a shout out to Drake Music, who do incredible work researching and creating assistive technology, as well as providing sessions for disabled musicians and outreach sessions for musicians, friends, families and teachers who might want to help their relatives, friends or peers to play.

I'd love to hear from other musicians whose playing is impacted by EDS, and of course from people who are doing education and outreach work in the UK and beyond. Comment here, or tweet me @theviciouspixie, and let's chat. Tell me about your projects!

Thursday, 14 May 2015

Getting up is hard to do

Here's a fun fact about me: every morning, without fail, I will wake up to find that one or both of my shoulders has partially dislocated.

When I tell someone this for the first time, I tend to experience one of three reactions. There's grim recognition from fellow bendy people; horror and wincing from my able-bodied friends; and a confused look of "I thought that was normal" from people I then advise to ask for a rheumatology referral from their GP.

The idea that not everyone wakes up in a certain amount of pain is a relatively new one for me. Because it's been happening to me for at least nine years, I'd assumed that this was normal for everyone to some degree - that everyone woke up and had to immediately readjust their shoulders, hips, and several vertebrae. Imagine my shock when I found out that some people can just roll out of bed and get on with their day!

I had long imagined that the world was divided into Morning People and Night Owls, and that the two would never understand each other. I thought that morning people probably practised some form of black magic, because mornings for me are impossible. To begin with, I can't remember the last time I slept through the night and woke up feeling refreshed. Between physical pain and the chronic anxiety that tends to soak into my dreaming subconscious, I wake up every few hours, gaze despairingly at the clock, and hope vainly that the next time I look at it will be when my alarm goes off. When my alarm does sound, I will very often fall asleep again the moment I press the off switch, because I'm still exhausted.

Once I eventually wake up, which can be up to four or five hours later if it's been a really bad night, I have a brief and blessed window before the pain kicks in. I'll spend about ten minutes gingerly testing all my various joints and limbs to see what's fallen out, and stretching any painful muscles, and then I'll try to get out of bed. This can take several attempts, because often my hips will pop out as I move to put my feet on the floor, or I'll see stars as I straighten up and have to sit or lie down again. The whole process of getting out of bed generally takes upwards of 45 minutes, and it's very difficult to accurately factor it into my plans for the day.

As an added bonus, it can take up to two hours after getting up before I can keep any food down. And I can't string a coherent sentence together until I've had two cups of tea, but I'm given to understand this is a rather more common experience.

So next time someone tells you they're not a morning person, hang onto your comments. They might just be a bit slow to start, but they might equally be going through something like this.


Monday, 11 May 2015

How I got my diagnosis

Stop me if you've heard this one before. A person goes to their GP and says "Doctor, doctor, I think I have Ehlers-Danlos Syndrome!"

In an ideal world, this would start off a chain of referrals to various specialists who would help that person to treat the various aspects of ther condition that are causing them trouble. This is not an ideal world, though, so the punchline will usually be the doctor looking confused and asking you what you're talking about, or denying the existence of the condition and/or your symptoms.

I can't judge GPs too harshly. They're not trained to deal holistically with one condition with a diverse spectrum of symptoms; they're trained to deal with one problem at a time, and by and large they're doing their best with the tools they have. If you're lucky, your GP will have the time and the energy to research EDS and make some informed decisions with you about how best to proceed. More often, however, GPs are stretched for time and will make it Not Their Problem as quickly as they can. This is immensely frustrating to us as patients, especially when our problems are dismissed out of hand.

My diagnosis of EDS arrived with basically no input from GPs at all. The first I knew about it - despite presenting with symptoms at various points in my childhood and teenage years - was in the winter of 2010, when the mother of my then boyfriend observed that my middle fingers are crooked. They’re the kind of shape you’d normally associate with arthritis caused by a repetitive movement like knitting, but here they were on someone young and arthritis free.
My right hand, complete with askew middle finger.
A physiotherapist, she proceeded to ask me a number of questions about my history, and finally she challenged me to touch my thumb to my forearm, as in figure 2 below:
Taken from www.physio-pedia.com. And yes, I can do all that other stuff as well, in case you were wondering.
On doing this, she told me I might be hypermobile. I had no idea what that meant, so I thought nothing much of it until some months later. I was at a party in a field, celebrating the birthdays of two friends. A shout went up for help dismantling the tents, and the person next to me mentioned that they had hypermobility and couldn’t join in. “Oh, hey,” I said, “I have that too!”

My new acquaintance, it turns out, participated in some clinical trials relating to the condition. As a result, they know basically everything there is to know about it. They told me to talk to my GP and ask for a referral to the hypermobility clinic at UCLH, which is a centre of excellence in research and houses most of the few specialists active in the UK.

Despite being fortunate enough to live in London (making it more likely that I'd be referred to the right place), it took me a year to summon up the courage to ask for a referral. My GP at the time wasn’t terribly sympathetic, but grudgingly agreed to “exaggerate my symptoms” and send the referral in. A few months later, I was seen and given a formal diagnosis of Ehlers-Danlos Syndrome.

Three years later, this person and I are firm friends, and they still have a wealth of advice to give me about how to manage my condition. When my dizziness and blackouts returned after a three-year absence, they told me what they were and how to take care of myself. When I reported gut symptoms, they gave me advice on tracking my diet. Since I’ve known them, they’ve given me tips on everything from exercise to how to talk to doctors. We’ve shared joy at each other’s good days and frustrations at our setbacks, and I couldn’t put a value on their friendship.

Community has been key in my EDS experience so far. I’ve passed on the advice my friend has given me, and a little group of supportive friends has formed around me. Symptoms like fatigue, brain fog, chronic pain, anxiety and depression can be incredibly isolating, and so the Internet has also been vital, connecting me to people - often total strangers - who understand what I’m going through and can throw me a lifeline when I’m struggling. Community is often there when doctors dismiss us or won’t see the complete picture of our symptoms. It’s there when oppression comes at us from all sides of the political sphere. We have each other, and we’re holding tight.

To all my friends, on and offline, this one’s for you. You all rock.

Sunday, 10 May 2015

We Can't March

As an indeterminate number of protesters took to the streets on May 9th (the precise figure apparently depends on how right-wing the paper you're reading is), disabled activists took to Twitter under the hashtag #WeCantMarch to make their voices heard. The hashtag was started by Twitter user @hnahhnah, who is organising further actions with other activists, and others.

Tory austerity measures have been particularly harsh on vulnerable groups, with disabled people bearing the brunt of an onslaught of cuts to social welfare. It's harder than ever for many of us to access the financial support we need in order to survive. Those of us who have suffered - some disproportionately - under the Conservative-led government may want to show our opposition in some way, but the standard method of attending rallies is inaccessible to many of us for all sorts of reasons.

How does EDS prevent me, personally, from attending marches?
- I can't walk the kinds of distances usually covered by protest rallies.
- I can't remain on my feet for longer than about 10 minutes without severe pain.
- Were I to use a wheelchair on a march, I would risk being tipped out of it.
- If I am kettled, I will not be allowed to take the measures - sitting, lying down, stretching - that will keep my pain levels at least bearable.
- If I fall while marching I am at disproportionate risk of injury, either by being trampled or by being helped to my feet (thanks to joint laxity in my elbows, wrists, and shoulders).
- If I am arrested, I risk injury when being manhandled by police and may be denied access to essential medication. This might sound like an exaggeration, but it's happened to a lot of people.
- If I am injured in a kettle, I may be denied access to medical treatment.
- Large crowds carry a disproportionate risk of personal injury and excessive amounts of stimulus, which in turn gives me panic attacks.
- If I do attend a march and nothing bad happens, it will still take me at least two days to recover to the point where I can do basic daily tasks again.

Does this mean people with EDS and other disabilities should be locked out of protest, when austerity measures are causing us so much suffering? Of course not. And this is why #WeCantMarch is so important. We can't march, but we can organise. We can help produce information pamphlets and make signs. We can provide food and water for protesters, and catering for after marches. We can provide telephone and Internet based support to arrestees. We can lobby the media to provide honest, unbiased, and accurate coverage of rallies. We can boost your voices while adding our own. The hashtag lists a wealth of other ways in which we can support people at rallies 

I have these words on this page. I cannot march, but I can still shout. Let me in. If you're organising, take some time to think about how you can include people who can't march - not just people with disabilities, but people who are at greater risk of violence (such as ethnic minorities, immigrants awaiting asylum decisions, and people who are visibly queer or trans), and people who can't afford to travel to major cities, and people whose caring obligations or professions take priority over risking arrest, and countless others too.

We'll be over here, organising and doing what we can. Join us, and let us join you.

Recommended reading:
Caroline Lucas writes in the Independent about the likely impact of cuts to the Independent Living Fund.
[Trigger warning - suicide] Investigations of suicides linked to benefit sanctions are ongoing.
Report on the case of David Clapson, who was found dead in his home after benefits sanctions.
[Trigger warning - suicide] Black Triangle lists benefit claimants who died after sanctions between February and October 2014.

I welcome suggestions for other resources, particularly on barriers to protest for people who are nondisabled but belong to other vulnerable groups. Comment, or tweet me @theviciouspixie, and let's get a conversation going.

Friday, 8 May 2015

EDS Awareness Month

As many of my followers know, I live with Joint Hypermobility Syndrome, or Ehlers-Danlos Syndrome (hypermobility type). As many as 1 in 20 people have some form of hypermobility - if you were double-jointed as a child, or you used to be really good at ballet or gymnastics, that's you - but for a minority of us, this becomes a disabling illness later on in life. The laxity of our joints leads to frequent dislocations (or partial dislocations, known as subluxations), near constant muscle pain, low energy, and fatigue. Many of us need to walk using a stick or crutches, or to use a wheelchair all or part of the time.

EDS is primarily a disorder of the collagen, meaning that it can also affect the digestive, circulatory, urinary, and autonomic nervous systems. This produces a laundry list of painful and debilitating symptoms and partner illnesses. EDS has also been linked to dyspraxia and a number of autistic spectrum conditions, as well as fibromyalgia and chronic fatigue syndrome. Between the pain, the frustration, and the stigma we face as people with visible or invisible disabilities, many of us also live with mood disorders or other forms of mental illness.

May is EDS Awareness Month, so I'll be making an effort to revive this blog to talk a little about it. I write this post just after a UK general election where the Conservative Party - who have made no secret of their contempt and hostility towards people with disabilities - have won a parliamentary majority. I write in the face of fear and dread for the future, knowing that many people out there would gloat at the discomfort, disbelief, pain and stigma I, along with hundreds of thousands of others like me, face on a daily basis. But these words on this page are one of the few ways I can fight ignorance and prejudice, and maybe a few people will read them and take them to heart. So here we are.

Welcome, friends. It's going to be a bumpy ride, so get as comfortable as you can.

Tuesday, 20 January 2015

On Anger

[Content warning: this article contains references to depression, anxiety, and self-harm.]

Sometimes I will make little quips about how angry I get. They vary, but the gist of them tends to be the same: I have to be angry, or I will just stop. I say it with a smile and a shake of the head, but it's not a joke. Not really. My anger powers me. If I wasn't angry, I don't know what or how I'd be.

Anger is an energy. Sometimes this energy manifests in me another way. I have a lot of feelings, and I feel them strongly. They could be excitement, or joy, or crushing depression, or unbearable anxiety, or something else entirely, but they are coins. If you turn them over, anger is most often the queen's head you'll find underneath.

I don't know when it started. My parents insist I was a happy child, though that's not what I remember at all. All through school I was an outsider, and it didn't take long for my misery at this to turn into resentment, which turned into rage. It was worst when I was a teenager - a simmering pot of sadness and fury that could bubble over at the slightest provocation.

Back then, and for a long time afterwards, I would send my anger outwards and hurt the people close to me, or I would turn it inwards and hurt myself. With the benefit of life experience (and no small amount of psychotherapy), I have gradually learned that it's best to express it - to channel it in ways where it targets no-one, but floats into the atmosphere and disappears. That, for me, is the only way to deal with it without harming anyone. If I keep it inside, it becomes depression and anxiety and threatens to explode out of me, burning anyone it touches.

So I talk, and I write. Sometimes I'll turn it into acerbic wit, and sometimes I'll leave it as it is, incandescent and untouchable. Bright flames are hard to look at, I know. Many people accept my anger happily. Some even love it. But other people tell me that it's too much - that I feel too much and they cannot bear it.

That's what they tell me, anyway. What they mean is that I say too much, and they will not tolerate it.

Often it is to do with the things I am angry about. Usually, it's some form of injustice. I hesitate to call myself an activist - I feel this term makes my actions sound more meaningful than they are - but I talk freely and openly about the injustice I have experienced, and I freely and openly express how much I deplore injustice against others. I am not one to mince my words. I swear, I use strong phrases, and I avoid euphemism. Some people find this intimidating. Some simply find it objectionable - often, I suspect, because they perceive me as a woman, and women should not be as strident and forthright as I am. Women should bear injustice against themselves with good grace, and be calm and measured in their defence of others. Emotion is weakness. Robotic logic is strength.

Fuck that.

If I become aware that I am harming someone, I will stop and moderate my tone, because the entire reason why I express my anger the way I do is to stop it from hurting anyone. But if it is the strength or the existence of my feeling that offends you - if your eyes are sore from staring at the fire - then I have nothing further to do or to say for you. My feelings are mine. They are valid, and a lot of the time they are worth hearing. By silencing me, you are telling me that your comfort is more important than my well-being, and I will not stand for that. Not any more.

My voice is my healing, and I will wear my words like armour to protect myself and the people I love most. You will not buy your comfort with my silence.

Wednesday, 7 January 2015

In with the new

For the last couple of weeks, I've been blogging over at Halfway Out of the Dark, which I set up as a support blog for people who - like me - find the winter holidays challenging. And I remembered that I quite like writing. And I'm quite good at writing. And it was nice posting to a schedule of sorts. So this, the new year, seems like a good time to revive a blog.

I've never really been that good at sticking to a theme, or a specific schedule, so I'm not going to try. I'll be aiming to post roughly once a week, on the topic of whatever has intrigued me or made me cross in the last 24 hours or so. Maybe that'll build into a schedule and a theme, and maybe it won't. It's an adventure!

Expect to see posts about subjects including, but not limited to:
- Mental health
- Disability
- Music
- UK politics
- Italian politics
- Makeup
- Football
- Slice of life

Since I can't really be bothered to plumb the depths of human existence at gone midnight on a Tuesday, let's talk about new year's resolutions. I've just done a post on HOotD about this, but HOotD isn't about me, and this blog is.

I've quite a variable attitude on new year's resolutions. I very rarely keep them, so some years I make them (thereby setting myself up to fail, because I go in with the mindset that I'm not going to keep them) and some years I rebel and don't bother. I think I made resolutions at the start of 2014. but I can't for the life of me remember what they were.

The other thing is that I tend to decide I am going to Overhaul My Life and Make Everything Better on a semi-regular basis - usually when I'm entering a hypomanic phase - so the only thing that distinguishes new year's resolutions from any other kind is the timing. And it just so happens that I'm skirting around a hypomanic phase at the moment, so I threw out a bunch of stuff I was no longer using over the weekend and have been desperately trying to force myself to use my paper diary. Every year I buy a paper diary and every year I leave it mostly unused. I don't know why I keep beating this particular dead horse, especially since Google Calendar runs my life and helpfully beeps at me so I don't forget things. I guess I'm just a sucker for stationery. My 2015 diary is bright orange and I've been colour coding everything I write in it, because my inner 12-year-old insists on that sort of thing.

I've also made some tentative resolutions. You're reading one of them right now, and the others are divided into categories, because I'm a grown-up now and grown-ups organise everything, including their new year's resolutions.

Work:
I spent most of 2014 as a support worker in sheltered housing. When I say this is how I spent most of 2014, I mean that upsettingly literally: when I looked over last year's Google Calendar trying to remember how I'd spent my time and what I'd been up to, I realised that I had spent most of it at work. Whilst I was a bank worker, and thus technically free to take up as few or as many shifts as I wanted, I am a workaholic and terrible at saying no, so I ended up working 50-60 hour weeks on a semi-regular basis. This would be punishing enough for someone who does not live with Ehlers-Danlos Syndrome and an as yet nebulous long term mental illness; I live with both. I left my job in November before it could kill me.

In 2015, I am looking for a job with regular hours that I can stick with for a good couple of years. I don't know for sure what that's going to be just yet, but I have a few ideas, and it should be interesting to find out.

Music:
For those who might not know, I'm a classically trained singer and a depressingly amateur pianist. I sing with a semi-professional choir, which I love, and I've taken up piano lessons after a seven-odd year hiatus. My musical goals are to continue to sing with the choir, to sing solo in public at least once, and to play piano at a jam night.

I also write my own music, which I'm hoping to record in the next month or so and to perform live in the first half of the year.

Adulting:
At the ripe old age of twenty[mumble], I live with my parents. In 2015, I am hoping to not live with my parents any more. I also hope to get my driving licence, and to be Financially Solvent and self-sufficient.

My biggest Adulting challenge is trying to establish a routine. Since I am currently not in work, and my Nebulous Mental Illness makes habit-forming something of a challenge, I find it exceptionally difficult to find a routine and make it stick. So this is going to involve trial and error, a lot of patience, and being much kinder to myself than I'm used to. Bring it on.

Health:
My health is not an easy thing to plan for. Around this time of year, most people seem to be talking about making changes to their eating or exercise habits. For me, this is tricky. I already eat reasonably well most of the time, so aside from making more of an effort to eat three meals at more or less the same times each day there's not much to say on that score. Exercise? This morning I did two loads of laundry and changed my bedding, which put me out of action for the rest of the day. After a three hour nap I was just about able to cook dinner for myself and two other people. This, incidentally, is by no means a particularly bad day. In theory, regular exercise will help manage my fatigue and increase my strength and stamina. However, when you know that exercise will probably be the last thing you can do in a day, it's much easier said than done.

With this in mind, I'm taking a "what I can, when I can" approach to exercise - aiming for once a week to begin with - and resolving to learn to pace myself better (which is tricky with my mental health condition, but I'll persevere) and to be assertive in demanding the right treatment and care from relevant health professionals.

Hobbies:
With my work schedule, I seriously neglected my hobbies in 2014. Even music was difficult to fit in - I was so drained that I missed a lot of choir rehearsals, and it was rare that I found the energy to do a useful amount of piano practice. Social events often got cancelled due to illness. However, some of my fondest memories of last year were plays and concerts I went to, so this year I intend to do lots more of that. And there's this here blog, of course.

Why is music separate from hobbies? Music isn't a hobby. It's much more integral to my life than that.

Relationships:
This has actually been one of my biggest success stories of the last year. In 2014 I met a ton of delightful and interesting new people, made new friends, and started a relationship. I couldn't be happier with how that went - especially in the last two months - so my resolution for this year is simply to build on that. I want to develop my existing friendships, make more exciting new friends, and enjoy my relationships.

Wish me luck, friends. I've got a lot to do!