Blindfolded

My seminar yesterday on impairments which can affect communication was very interesting. We spent part of it trying to lipread, to help us have (only the tiniest of course) insight into what it might be like to do so, also to show us what helps someone to lipread and what makes it more difficult.

Then the tutor pulled out a bag of blindfolds and asked us to go in pairs and guide/be guided around a couple of the university buildings. (We were asked to take the lift instead of stairs and not to cross roads). Now, this is another interesting experience for students who’ve probably never thought about what it is like to have a visual impairment, but I thought that *my* reaction to it and the difference it made to my mobility was another point worth thinking about.

Due to EDS, I have almost no proprioception. I don’t know where my body is and what it’s doing. I love to take ballet classes (energy and body allowing) and I am always glued to the mirror. If I close my eyes and hold an arm out I can’t tell if it’s in front of or behind me. I couldn’t tell if I was putting my foot down flat, or if it was bending off my ankle. Because my ligaments are too loose, I don’t get feedback from my limbs to my brain. This made walking blindfolded very frightening. I occasionally use a walking stick for stability. I was massively more aware than usual that a change in floor surface could have tripped me up (and caused sprained ankle/tendon injury/fracture much much more easily than in most people). I could also feel the instability in my back and pelvis much more than usual, presumably because I was less distracted by sight and having to ‘focus internally’ more and think about feeling. This was more like my hydrotherapy sessions when I have to ‘tightrope walk’ along a line on pool tiles and i can feel how my back moves too much from my hips, wobbly spine being pushed by the water. The person who was guiding me didn’t know that I open doors by pushing with my forearm rather than my hand, so I was scared she would let go of a door thinking I had it, and my wrist would bend and possibly sublux (also fingers, same thing).

I did mention to the tutor that I would find it difficult and possibly shouldn’t be doing the exercise (at least without ankle braces) and she advised me not to, after seeing how much I was shaking because of how scary it was. I did it anyway, because I’m stubborn and I try not to avoid doing things ‘just’ because they scare me*.

 

*I don’t advise this to others. People should do what they are comfortable/can cope with.

15 second planks and 3 hour naps

As a social work student (a mature student – 27 – I have to point out) i’m expected to write reflectively a lot, about my reactions, thoughts, feelings and assumptions in different situations. I have to do a reflective log at least once a week so I’m getting used to it, but last week we had a session about reflective writing where we were  asked to write freely for 6 minutes about an experience and I sat there  for 6 minutes without writing anything.

I hate expressing myself like that, without any structure  or time to prepare or think about what you should say. I think I ‘curate’ my reactions a lot, write carefully and re-draft over and over because I don’t like to read just my thoughts. So I thought I would try to write here more freely about anything that is going on in my life.

I’ve started my course this year, at the end of September, so I’m coming to the end of the first semester. I’ve never been to university before and have found some things fine (understanding concepts, writing academically) and other things very difficult (working with other students, managing my energy and concentration to get enough work done and be able to do anything at all out of uni).

I’m a disabled student, I have Ehlers Danlos Syndrome (hypermobility type), which is fairly mild but still affects me every day, also a history of mental health problems.

EDS means that I have a genetic defect in the way that the collagen in my body is made, so all my joints are hypermobile (‘bendy’), which causes chronic pain and often acute injuries/pain too, a few of my joints subluxate a lot, luckily I only dislocate anything very rarely. It also means I have problems with my digestive system and some minor autonomic problems (my body doesn’t regulate its temperature well, I get dizzy a lot and have a tendency black out and fall over first thing in the morning.Also chronic fatigue, which is currently a big pain. I’m so interested in invisible disabilities like  mine, one day I would love to do a PhD…

So today started off with a 15-second plank, which nearly killed me. Very painful, but luckily it didn’t seem to bother my unstable right shoulder too much. I really need to be better about doing physio exercises and especially for my core muscles, as my spine is really wobbly and so my back gets very tired and painful from just staying standing or sitting. Hopefully I will get my plank back up to a longer time soon, last time I was doing it regularly I got up to over a minute and was quite proud.

When I came home from uni (I took  my disabled students’ allowance-paid-for taxi both ways today, hoping to save some energy) I lay down on my bed for a minute and woke up 3 hours later, with no idea what day it was. Then was quite disappointed it was still today as I’d much rather have slept through til tomorrow morning. I made it out to the shop to buy some vegetables and threw some things in a  saucepan and lay on the sofa til it was all cooked. Then I had my stew-thing with a half-frozen pitta bread because I was too tired again to stand up or sit in a kitchen chair while it defrosted  in the toaster. Now I’m pretty much ready to go to bed again, pity that I’ve done no studying today apart from being in a lecture and seminar.