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Life as a Musician with EDS Part 1

10363687_10204127642014020_4256059684415211925_nMy name is Rachael, I’m a 23 year old postgraduate student at the University of Leeds and I am one of the organisers of Cripping the Muse. I was diagnosed with Hypermobility Ehler’s-Danlos Syndrome (HEDS) on the 4th April 2015. Although I didn’t get my diagnosis until I was 21, EDS has had a massive impact on my life, and my relationship with music, from a young age.

The Ehler’s-Danlos Syndromes (EDS) are a group of 13 rare connective tissue disorders which are caused by genetic mutation. In most types of EDS, including HEDS, the genetic mutation causes a fault in collagen, meaning it is fragile and stretchy. Collagen can be found in muscles, tendons, skin, blood, organs and almost every other part of the body, EDS is a multi-systemic condition; it affects multiple parts and processes in the body. Because of this, most people with EDS have a number of comorbid conditions.

The main symptoms/comorbid conditions of EDS that affect me are:

  • Joint hypermobility
  • Chronic pain
  • Chronic fatigue
  • Regular dislocations and subluxations
  • Chronic migraines
  • Chronic idiopathic uticaria
  • Gluten+egg intolerance
  • Postural Tachycardia Syndrome (PoTS)
  • Depression
  • Brain fog
  • Easy bruising

Although musical performance has always been a big part of my life, my relationship with it has been far from straight-forward.

The first instrument I started learning to play was the Piano at around the age of 4. My family moved from Aberdeenshire to Derbyshire on 4th July 1999 and my Dad was in the process of setting up a new business so my Mum spent a lot of time at home that summer looking after me, my brother and my two sisters. I started to entertain myself by ‘playing’ the piano, which must have driven Mum insane because she eventually got me lessons.

Although I stuck at the piano through primary school and got my Grade 5, I decided I wanted to try a different instrument, one that I could play in a group. My brother had started learning the violin and was attending the local music centre, so I joined the recorder group. I quickly progressed to playing tenor recorder in the senior recorder ensemble. By this point I had set my mind on learning the clarinet. At the time the music centre was offering free use of an instrument and six free lessons to anyone who wanted to learn french horn or oboe. Mum managed to persuade a 10-year-old me to give oboe a go on the premise that it was similar to a clarinet*.

I had found my instrument (well, one of them). I began playing the oboe around Easter in Year 6 and quickly progressed. I got a distinction in every exam I took and had reached grade 7 by the Easter of Year 10. That was when the migraines started.

Migraines are a massive part of the way EDS impacts my life, and they affect every part of it. From Easter of Year 10 through to the summer after I finished my A levels I was having, on average, 2 or 3 migraines a week. I normally wake up with a migraine, so it’s too for gone for any medication to work. When I have a migraine all I can do is hide in my bed in a dark, quiet room and hope it goes away quickly, though even after it had I would have a headache for at least another day. This meant I missed days of practice as I can’t play when I have a migraine, and playing whilst I have the residual headache only makes it worse. Because of this I eventually had to step down from playing principle oboe for the North East Derbyshire Youth Orchestra. Luckily, I was still able to play with the County Youth Wind Band and had the (amazing!!!) opportunity of playing with the European Youth Orchestra of Darmstadt in 2012.

Playing Music has always been my escape from stress, the thing I enjoy doing the most, so having to massively cut down the amount I was playing made an already difficult period of my life much worse. As my physical health declined I became quite badly depressed and playing music was one of the few things helping me cope, so the fact that it seemed like I was losing that too sent my mental health on a downward spiral. I began hiding in my room, not wanting to get up or do anything even when I didn’t have a migraine. Luckily, my parents are amazing and noticed. They got me help and I realised that I needed to find a way to keep myself engaged in creating music. I began experimenting with other instruments, trying to see if there was one that I would enjoy playing as much as the oboe but without causing my after-migraine headaches to get worse. This is how I ended up teaching myself saxophone. I discovered that Mum had a tenor sax lying around (for fellow my saxophonists: it was a Selmer Mark VI!!!) and would cheer myself up by teaching myself to play. Again, I progressed quickly and soon reached grade 7/8 standard, though to be fair I didn’t have much else I could do. I also found that, on days when I couldn’t play at all, composing was a great way of engaging myself with music.

On the days I didn’t have a migraine or a residual headache I would work on my Grade 8 oboe pieces. It wasn’t until two years after I got my Grade 7 that I had my Grade 8 exam. You’ll never guess what happened on the day… I had a migraine. I still went, though I don’t really remember it, and I managed to get a merit, which I’m incredibly proud of now. But at the time it was very disappointing not to get another distinction, considering how much I’d put into preparing for it. It really knocked my confidence; I wanted to study at a conservatoire and I was starting to think that my migraines (I didn’t know it was EDS at this point) would stop me getting there.

Although my migraines eventually settled down and I only get them once a month now, EDS still affects my playing. Unfortunately I now know that I will probably never be able to perform at the level that I once did, and I definitely won’t be able to make a living out of it. It took me a long time to become OK with this, but I am. My next post (Life as a Musician with EDS Part 2) will take you through my journey from doing my Grade 8 during one of the worst times in my life, to where I am now, starting to get to grips with managing being a musician with EDS.

*This is slightly ironic because people thinking this is now one of my pet peeves- Yes, they may both be made of dark wood with silver keys but clarinet and oboe are VERY different, I promise!

*As May is EDS Awareness Month I writing a daily blog about my life with EDS, check it out here *

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