Dear Father Christmas

Dear Father Christmas,

I've tried to be good this year. I've made some new friends, attempted to make peace with some I fell out with, and made an effort to keep in touch with old friends along the way. I've looked after my grandad when he's been ill, I carried out the promises I made to him and visited my grandma and passed my exams. I've tried to be nice to my sisters, even they've made me want to tear my hair out, and I've helped my mother when she's asked for it. I've worked hard and got the marks I've deserved, and I'm finally accepting my health problems.

So, in return, please may I have:

• Some extra spoons - they'll be needed in the New Year
• Some help with this awful Student Finance screw up
• A couple of friends at University - being alone is so hard sometimes
• Some extra space in my brain for all the stuff I need to know
• New ways of learning things that works for me and sticks - I'm struggling
• And some acceptance from friends, colleagues, the medical school and my family of my illness and of me as a person.

Thank you for reading this, whether you can fulfil it or not.

Truffle

xx

Still Here

I'm still alive, I have lost a chunk of my sight, and am being sent for all manner of investigations into my eyes, joints, skin and heart, including seeing a geneticist, so everything's a bit crazy. I'm also on a clinical placement at the moment so learning lots in a very short space of time with long days, all whilst trying to maintain a social life and enter dance competitions that I'm probably not well enough to do. Tough times but I'm still here and still keeping going. Normal blogging will resume soon! I'm still on twitter and still check my emails regularly - let me know if you have any ideas for things you want me to blog about, or if you just want to get to know me better

Back soon!

Truffle

xx

Eyes...

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?

It's A Strange World

Those of you who follow me on Twitter will know that I've recently spent 9 days in hospital. It was an interesting experience to say the least. It was very up and down and incredibly emotional. I cried a lot, I got angry a lot, and I learned who my friends are really and truly. Being ill enough to be in hospital teaches you a lot.


It's a very strange experience being a patient in your own hospital. On the first two wards I was on, I knew the majority of the staff, and even managed to have a catch up with a few of them, but suffice to say, it was very odd not being in control of anything. Even through the pain, I wanted to answer ringing call bells.  I wanted to help the other patients who  looked more ill than me. I wanted to help everyone, and be the one to answer the call bells instead of being the one pressing my buzzer. I got a real taste of how horrible and scary and disorientating and confusing and just how strange it is being a patient. This is something I'm going to remember in future. I don't think I could ever fully appreciate what it was like in the hospital as a patient before now.


Throughout the whole time, my best friend and my boyfriend (The Manchester Medic) were both very supportive. They even made my birthday fun, despite me being in hospital and in pain, and feeling generally terrible. I felt like a fraud to begin with, because everyone else just looked so much more ill than I thought I did. It was only on the second night did I realise how ill I actually was. I'd fought this illness for a month before admitting defeat and letting myself be admitted to hospital. Medical Students are well known for the phenomenon that is "Medstudentitis". We all think we have every disease we study. Something that comes from having too much knowledge I guess. Except, I'd refused to admit that I really was ill. I kept saying I was fine until the point where I just had to give in.


I learned a lot from being a patient, and this is something I'm going to share over the next few days and weeks.


And for those of you wondering about my health - I'm still in pain, I'm still exhausted and I'm still ill. Nobody knows what's wrong but it's definitely not an infection or anything urological. If you want to play guess the diagnosis, email me and I'll give you a run down of my history and symptoms. Would be interesting to know what differentials people come up with!! Let me know by leaving your differential diagnoses in the comments of this post.