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Disability Narratives

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Interview excerpt: Mary has had to find ways to adapt to the new routines she needs to help manage the pain from her condition.


Image representing Mary

I think you have to be careful that you don't build up associations, so that - because if you're not careful I think you could learn that you have to stop work after twenty minutes, or you will get symptoms. If you see what I mean. I guess for most people with a kind of long-term problem, there is always that psychological battle as well, isn't there, of making sure that behaviours don't become entrenched, and that you're trying to take each day as a fresh day and not building associations with what happened the day before. So that's why I find it quite useful to change the timings on Workrave*, so that my brain doesn't get used to associating or thinking that it needs a break every twenty minutes, but that it could go longer. And that, that's been helpful.

So normally speaking, it's - I think it's quite hard for academics in the humanities - I'm sure other disciplines as well - but not to work at the weekends. But I have had to make a really coordinated effort to try and work as little as possible at the weekends, just so that I can really, really rest.

Another thing that I've had to do is to build in lots of exercise during the day. And I also find the physio works best if I'm at high temperature. And I also have hydrotherapy, which really helps. So, using a steam room and a swimming pool makes a huge difference to managing the symptoms. But that also means being quite organised on a daily basis. I don't, I don't live in Oxford. And I can't drive at the moment, so. I could drive, but it's not comfortable for me driving. So that has been another challenge, making sure you build all those activities into your routine.

And at first, I think because I was so alarmed that I couldn't read, I used to listen to things on audio the whole time. So I would - when I was on the bus, whilst walking round the park, whilst walking to the medical appointments, I'd be listening to academic articles or student essays. But I've been working with a fantastic physio, and she was trying to get me to see that actually just pummelling my brain the whole time may not be the best way for me to move on holistically, in terms of coping with a difficult condition. So she encouraged me to try and use that space, those moments in between, just to walk [laughing]. And just to let your brain relax. And I think that was actually brilliant advice. At first [listening to audio] felt like [it was] wonderfully time-efficient, but I think listening to audio so much maybe just meant that you get more and more anxious about the fact that you're not getting through enough work. And actually recognising that I'm not getting through as much work, but that's okay, has been really helpful. Yeah.

* Workrave is a program that assists in the recovery and prevention of Repetitive Strain Injury (RSI). The program frequently alerts you to take micro-pauses, rest breaks and restricts you to your daily limit.

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