Music and EDS

Second flute piece for symphonic highlights from frozen.
Christmas music

This article from the Foundations for Excellence on music and EDS-HT is interesting and echoed the thoughts that I have around the difficulties of playing music. It is worth pointing out that there is a difference between ‘hyper mobility’ and Joint Hypermobility Syndrome/EDS-HT. Hyper mobility is a positive benefit for musicians and dancers as it means the body can move further and better than the average person. When it starts to cause complications through the body, injury, pain and fatigue then it starts to tip into JHS/EDS-HT, although of course you do need a medical diagnosis.

I am printing off a copy of this to give to my Musical Director so that when I mess up a phrase I can say ‘it’s not my fault’. I wouldn’t do that of course. I’m a second flute so we just end up laughing.

However, the EDS-HT does cause some significant problems:

Sausage fingers

Not a technical term, but on some days my hands and fingers do not cooperate. They feel like someone has inserted a bicylce pump into my joints and filled them full of air. This causes a lot of pain, as well as putting a time delay between my brain and my fingers and robbing me of strength and dexterity.

I drop a lot of things, end up doing farcical comedy routines of dropping things, trying to pick them up, flicking them across the room and generally being incredibly clumsy. The other day I couldn’t get my hands to work enough to open a tupperware, and when I did I managed to drop most of it on the floor. What was in the tupperware you ask? Curry. Amazing.

On sausage finger days I either don’t play until much later in the day, or not at all. I am terrified of clumsily dropping my flute, trying to catch it and then batting it into the window and breaking it. Possibly with Benny Hill music playing in the background.

**since I wrote this I have indeed dropped my flute and bent the G# lever and it’s stuck under the pad, so the key is held open. I’m hoping it’s not going to be  too expensive to fix. Oh and my grade 5 is in a fortnight. Fantastic.

flute with the G#lever key bent
I bent the G# key!

Shoulder/joint issues

I sublaxed my shoulder during one of our concerts last year and it really hurt – this is a partial dislocation in case you are not sure. At home I set my timer for 20 mins and practice and then stop and make sure I pull my shoulders back in alignment as well as have a general wiggle around. The flute position drags the shoulder out and causes pain. I have to be very aware of the joints and their alignments and do a lot of stregthening exercises. My shoulder is the main one that is affected, but I am always on the look out for other potential issues to try to head them off.

Sitting still

I find it incredibly hard to sit still for periods of time, EDSers are known fidgets, it helps alliviate the pain and even stop the fatigue building up. Holding my body upright for that length of time is hard work because the collagen doesn’t work properly and so I have to recruit a lot more muscles than everyone else. If you watch me during rehearsals or performance I slump between pieces as I just don’t have the strength any more. Also the chairs are inevitably uncomfortable and don’t support me properly. My wheelchair is set up for me and so it is a lot better, but it is a hassle in a lot of performance venues, as well as just getting it in and out of the car for rehearsals when I only have to walk about 30 meters to be in the rehearsal venue.

Muscle memory

Although I don’t have any proof, I am convinced it is taking longer for muscle memory to kick in than it used to. Tricky passages need a lot of going over for them to sink in. Scales don’t seem to register as they used to. Of course this could be because I am now playing much harder things, but I know from swimming it takes longer to build up muscle than it used to and this is due to the fact that the collagen does not form properly or very quickly.

Affecting rehearsal

In an ideal world I would rehearse everyday for at least 1-2 hours and attend every band rehearsal. However this doesn’t happen. There are a lot of reasons why I might miss rehearsal:

1) fatigue – although I really do prioritise my music as it is really important to me and helps me to feel like myself and not a sick person, there are times when I am too fatigued to make it to rehearsal or my own practice. It can also affect rehearsals while I am there and sometimes I have to leave early as I am worried that I still need to drive home. It doesn’t help that rehearsals are in the evening, which is not my good time of day.

2) illness – I am prone to illness  – this affects practice

3) sausage fingers – see above, some days due to bad sausage finger days I don’t trust myself to play

All of this reduces the amount of time that I can put in to practice.

Proprioception

“The possible link between hypermobility and impairment of proprioception has not yet been studied in depth in musicians but seems likely and if confirmed might prove a further undesirable association of hyper mobility.”

Yeah – have you seen me walk through a room? I bounce off of walls, into doorframes and when I was a teacher I had a line of bruises all across my thighs from repeatedly walking into the desks. This is one of the reasons why I use a wheelchair – I “drunk walk” and am at risk of injuring myself. Plus it takes a lot of mental energy and concentration to walk without falling over. I am convinced that not knowing where I am in space can make it a lot harder to play pieces, especially all those stupidly twiddly bits (technical term) that the flutes get.

Conclusion

So there you go, it does make life a lot harder for us EDSers. You may well be asking why on earth I continue to do this when it is such a hassle? Well music really helped me to turn my illness around and, equally as important gave me something to focus on other than being sick. It gives me huge, huge amounts of joy and I love my band oh so much. I have made friends there, and it is wonderful to have something to look forward to each week. If I am in pain I will do my practice, as I can’t think about the pain while I am practicing. That is a very valuable thing.

Music has become such a huge part of my life, and in a way I am grateful to my illness as I don’t think I would have gone back to music if I hadn’t got so ill.

thanks Lisa​ for sharing – a fellow #eds er who introduced me to the idea of concert bands and I will always be grateful. She’s a clarinet teacher in south London if you are looking for a teacher!

Published by Jen Farrant

Consultant | Writer | Photographer

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4 Comments

  1. That was a good article that you wrote. I read it and I found it very interesting. I understand that it can be difficult to play, when you are suffering from EDS. When were you diagnosed with that problem? You are very brave and still eager to do many things and that is what makes you great. Still keep on doing what you are doing and enjoy your life to the fullest!

  2. thank you!

    I think I was kind of diagnosed as a child, and got a proper (on paper) diagnoses in my twenties, but it only really became an issue in my mid thirties.

    And yes I will always carry on doing what I want to do to the best of my ability!

  3. I have been living with Asperger’s syndrome all my life. I was actually born with this particular type of problem. However, it did not exist, when I was a child in the 1980s and nobody in my family, the teachers and children at my school, and my friends did not know what it was. They knew that my behavior was different than many people, but they could not figure out what particular problem that I had. I went to the Children hospital at age six and the head psychiatrist could not diagnose me having Asperger’s syndrome. When my sister was studying for her medical degree in the late 1990s and early 2000s, she was studying the psychiatry part and she guessed that I had Asperger’s syndrome, because she realized that I had quite a few of the characteristics of that problem and I was in my mid twenties at that time. However, in 2003 at age 30, my psychiatrist definitely diagnosed me with Asperger’s syndrome. So, in 2003, I was diagnosed late with that problem meaning that I was not a small child, because some people are diagnosed with it at age two. I was bullied by kids at school up to the age of 14, because I did not fit in with the rest of the children in class and I had mannerisms that were unusual for them. Even some of the nice kids did not want to continue to be friends with me nor talk with me at school, because I did not act like the other girls in the school. It has been very difficult for me to live with that problem, because people never really accepted me what I was as a person. The reason that I do not work is because I have Asperger’s syndrome, so I have the disability pension. That is one of the reasons that I have been going to school for so long. If I had a full-time job, there is no way that I would have time for studies.

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