Thursday, 2 September 2010


Anyone who knows me, will know that my eyesight is, quite frankly, horrific. I've worn glasses since I was 3 and had a patch that failed to correct a squint for two years when I was 4. I have poor spatial awareness and depth perception. I can see about 10centimetres (4 inches) from my face without my glasses. At the moment there are very limited options for contact lenses for me so I can't wear them currently because my prescription is so high. I cried the first time I wore contact lenses because I'd never seen myself in a mirror without glasses before.

Simple things are difficult for me because of my eyesight, so I'm going to attempt to describe an average day at university in order to explain just how difficult things are, because it's things people take for granted that I struggle with from day to day.

So, I wake up. First thing I have to do is find my glasses. Mostly this involves a lot of groping around. There's no point turning on the light yet because it won't help me see the glasses. Once I've found them (it usually takes about 10 minutes) the lights go on and I get up for a shower.

Showering is, well, fun. I have to make sure that my shampoo bottle is a different colour from my conditioner bottle and different again from my shower gel. I also have to have brightly coloured razors so that I can find them all. If my shampoo and conditioner look similar then I have no idea which is which until I pour them out. Glasses steam up in the shower so I can't see anything even if I do keep them on.

Once I'm showered I then get the fun of putting make up on. I have to have a mirror really close so I can see to do my eye makeup and then wait for it to dry before my glasses go back on. Putting in earrings I've learned to do by feel now so that's no issue. By this point I've usually fallen over or spilled something at least once. I'm permanently bruised from stupid accidents. Getting dressed means I don't wear anything with fiddly straps or buttons because I can't see to do them properly and my coordination isn't good enough to do them up based on feel alone.

Breakfast is again interesting. If I have cereal, it's a given that I will spill the milk. If I have toast, I'll struggle to get it out the toaster, cos where the toast is and where my brain thinks it is and thinks my hand is in relation to it are two very different things. Coffee is needed at this time in the morning and I'll miss the cup putting sugar in and spill it en route back to my room.

I pack my bag with my laptop, a textbook, notepad, highlighters, a ruler and pens and head off to lectures. When I get to the lecture theatre, I hold on to the railings/chairs as I walk downstairs cos I fall over a lot as I fail to judge how steep/deep stairs are. Once I'm settled in my seat (near the front so I can see the lecturer clearly), I fire up the laptop and download the powerpoint for the lecture. If I don't, I can't read it on the projector. At this point I usually have to enlarge the text and change the colours to make it easier to read. I follow through the lecture, making notes by hand, then immediately type them up afterwards - my handwriting is so bad because of my sight that if I don't type it up then I have no idea what it says a few hours later.

Lunch is the same as breakfast and I knock stuff over, fall over and spill things. Occasionally I miss my own mouth with food or drink which makes a right mess.

If I have a placement then things are even harder because a lot of the clinical skills we use I have to shut my eyes and use feel or shut one eye or the other to adjust for my sight and make sure I know exactly where my hands are.

Dinner is just as difficult as lunch and breakfast. I usually try and run before dinner, but if it's even just drizzling I generally don't because rain on my glasses means I really can't see.

If I'm doing group work then I type everything up with a coloured background so I can see the text better, then convert it back before I send it to the group. I have to edit all of the group's work so I can read it properly on screen usually as people aren't considerate when I tell them that I can't read certain things, and I can't afford to print off 30 odd pages of work a week.

These are just a few of the things I struggle with. If I told you all of them then we'd be here forever. The point in me telling you this is because I've been offered Phakic Intraocular Lens Implantation Sugery. Paid for privately by my dad. I want to leap at the chance but the risk of me losing my sight is high. Laser surgery isn't an option so this is my chance at as close to 20:20 vision as I'm ever going to get. But I'm petrified. I lose my sight, my career is over. Question is, do I take the risk?


  1. Yes, go for it. In the meantime, have you registered with Disability Services at your university? They may be able to help and I know that at the university where I teach, disabled students get free photocopying and printing.

  2. I haven't. I tried but nothing came of it. I also am still waiting to find out whether I'm back in September or not. Essay results aren't until 7th September so I'm bricking it at the moment. I think if I wanted to register I'd have to get my surgeon to write to them explaining my difficulties, because to normal people, I just have a bit of a squint and wear glasses.

  3. I think, based on what you have described, you should have the operation. Let me put it another way: if your eyesight stays the same or worsens will you be able to pursue the career you want with glasses and your current/increased prescription?

    Frankly it's a tough choice and I'd be scared as shit and fully expect you to be as well.

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  5. By the way Alhi, it's nice to see you around. Hope you're well!

  6. Jamrock:

    Yeah those are exactly the things I have to weigh up. I'm absolutely terrified and it's a very difficult decision to make.

  7. Try again with Disability Services once the results are out. It does sound like you should be registered (from a lecturer's point of view!) and it may very well be beneficial to you in terms of placements, extra time to complete assignments. I have students who are registered disabled because they suffer from stress?! Apologies but WTF? Who doesn't suffer from stress! Having had 6 weeks sick leave due to chicken pox when taking methotrexate and still suffering after effects by getting tired ridiculously easily, I wonder how these students will survive in the real world and think we may be doing them a disservice by giving them extra time for assignments etc. Unfortunately, I'm not going to get extra time to mark exams/coursework just because I get tired.

  8. Definitely worth another go I think! It is daft the stress thing. I don't understand it, because you're right, we ALL suffer from stress!! It's a shame you don't get extra time because methotrexate is know for making people feel rubbish and lowering your immune system - I can't imagine what it's like but i feel for you cos I can't see it being much fun at all.

  9. I think you should hold off on any major decisions about the surgery until EDS has been formally ruled in or out as it has such a massive impact on the success of the surgery, especially with your eyes. I mean, surgery that makes a joint worse isn't good, but it's easier to learn to live with than surgery that makes your eyes worse. It'd also mean they might need to use slightly different techniques or materials, for example EDS'ers seem to do very poorly with the internal dissolvable sutures which don't actually dissolve and turn into metal like sharp fragments which are bad enough in a joint but I'd hate to think of them near my eyes!
    I've got all the same problems you describe in this post, but I don't think my actual vision/astigmatism is as poor as yours.
    Good luck with whatever you decide, but having had lots of surgeries prior to my diagnosis at round about your age because I was so desperate to be *fixed* and get on with my life my older person advice is this; in 10 years you won't regret having waited another 6 months or a year for surgery, even if it's wildly successful. However, if you go ahead now and the surgery isn't successful/makes matters worse then you will find it much more difficult to come to terms with if you hadn't given yourself that extra time. And now the patronising lecture's over and I'll shut up! BG Xx

  10. How freaky: when you talked about not being able to judge depths and banged into things I thought of EDS but I didn't know you were potentially waiting for a diagnosis of it! Think I may have been taking on board all of what BG's been saying!

    By the way, you are Truffle and Faye?!

  11. Yeah I'm both. One account is used to blog remotely. Ive been told I look rather eds by several peole and was told by a consultant rheumatologist that I needed to see her in first year. Kicking myself for not listening now!


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