BBC - Ouch! (disability) - Features - Student Diaries 2003: Ruth

Disabled Student Diaries 2003

Ouch! Special Report
Disabled Student Diaries 2003

Student Diaries 2003: Ruth

by Nuala Calvi

27th October 2004

Meet Ruth - one of Ouch's disabled Student Diarists for 2003. She has Nail Patella Syndrome and is studying Medicine at the University of Leeds.
Ruth

Interests:
I love music and musicals - Les Miserables is my fave. I play the flute and enjoy choral singing; not really into pop music. I play computer games a lot - mainly The Sims at the moment. Fave film is Patch Adams, and I love watching ER. Recently I've been doing some support work for disabled children in my spare time, helping them at the Brownies and stuff like that. My ideal evening is a mad party with friends.

School:
Hardcore mainstream. I have just finished at Aquinas Sixth Form College in Stockport. I used an AlphaSmart notetaker instead of a pen, because I can't hold one for very long due to a genetic condition I've got called Nail Patella Syndrome. It was my physiotherapist who put me on to the Alphasmart because my previous school had let me down on the access front and I'd been struggling. I avoided most PE while at school, either through being ill or my joints being too bad. I used a computer for my exams and scored five A's at A-level - count them!

University:
I'm living in catered halls on campus. I've recently had a stomach operation and am still having to eat soft foods. I contacted the refectory catering staff through Student Services, who have gone out and bought a blender to mush my food up for me!

I have asthma and can't socialise in smokey environments - if I did I'd probably end up in hospital for a week. Smoking, and smokey pubs and clubs, is a big part of student culture so I could end up being a pain in the neck to friends. I've heard there is a Wetherspoons nearby with a non-smoking area though.

I'm still waiting on a laptop from my LEA. We've been calling and calling and calling, and the other day my Mum finally got through to someone helpful who said they'd deal with it this week. See, harassing people really does work!

I'm studying medicine because I've wanted to be a doctor from an early age. I've always been interested in the human body and latterly the mind. Having been in hospital a lot as a patient, I've seen how they work and know I could do it better. I feel that I could empathise more with the people I'm treating.

WEEK 1

Sunday 21 September, 2003

Well, I'm half way through the first day, and there are no major disasters so far. I have been allocated a MASSIVE specially adapted room, which I feel a little guilty about as a non-wheelchair user. I know that they wouldn't have given it to me if there was another student who needed it more, but it's still a little weird explaining to people who you have never met before why your room is twice the size of theirs!
Ruth

Monday 22 September, 2003

Well, last night was interesting. As students do, everyone was off to bars, nightclubs and pubs, to drink and dance the night away. But little old asthmatic Ruth, having to avoid cigarettes, felt she was rather restricting her companions' choice of activities. I solved the problem by not staying with the same group of people all night. That meant that without being alone for the evening, my new friends could go and explore. You feel like a real thorn in the side, an absolute pain in the neck. Maybe I will schedule nights in, by myself, so that they can all go do what they want.

It feels so awkward when people you have only just met are having to adapt their lives to accommodate yours - I wish I wasn't asthmatic.

So I discovered bed at a relatively civilised hour, and set two alarms (just to be sure I woke up! I'm used to having a parent to shake me awake if I sleep through the alarm!) for 7.30am, to be up, dressed and breakfasted by 8.15am, when I had been told my first Personal Assistant (PA) would be around to wash my hair and do my physiotherapy. Well, it's 8.34am now, and still no sign. I guess I better go pop into Disability Services at nine, and see what happened.

Well, the good news is that my PA did come! She had not been given my address or phone number, so she had to wait for the office to open this morning. She was really nice, and it was also really good because no one else was up to ask why she was here. Just made things easier. When people asked tonight why I had this random lady coming to my room, my standard answer was that she was coming to do 'physiotherapy' for me. Not yet ready to share with the world that I need help washing my hair and making drinks.

Tuesday 23 September, 2003

It has been a quiet sort of day. Got up at 7.30am, the aim being to get dressed, go down to have breakfast at eight, and be back in my room ready for my personal assistant coming at 8.15am.

My hair was a mess. Could I really go down to the dining room? As I saw it, there were three choices. Should I:

1. Overcome my vanity and decide I didn't care what people thought about how I looked? (Let's face it - how many people are going to be down for breakfast that early anyway?)

2. Try and do my hair myself? (Difficult because of the problems with my arms - my hair was sticking up right at the back, where I can't reach it with the hairbrush).

3. Go hungry, skip breakfast today, and enjoy a few extra minutes in bed before the personal assistant came?

I opted for the third. Wasn't that hungry anyway.

When your mum does all your caring for you she is around a lot more of the time, so it's great, because you can ask for help as and when you need it. It's weird adapting to someone only being around for such a short period every day for pre-arranged appointments. There is no one to ask to do silly little things, like scratch my head when I get an itch. I guess it will be much easier once I get to know people, because that's the kind of thing a good friend wouldn't think twice about being asked to do. But in a new world, where everyone is a stranger, it's not so easy.

New method of scratching head: find something to rub your head against, rather than something to rub against your head (if that makes any sense at all!)
Leeds

Wednesday 24 September, 2003

Cool. I have had a great day! Spent a good part of it at our first 'medics' day - the standard introductory talks, then into smaller groups to meet some fellow medics, and then off for a big group photograph on the stairs outside the library. Lunch was provided, none of which I could eat because of my soft food diet, but in anticipation of this I had my handy yoghurt in my bag, which at least was something to keep me going.

It was great to meet some of the staff and other students who I will be spending the next five years with. Also, a lovely member of staff gave me some advice - to use my own initiative and tell all the staff who teach me about my problems myself, just in case the message hasn't passed down via the official systems. With about 260 new medical students, you can understand why the lines of communication may not be 100% reliable.

When I got back to halls, the tenth and final room on our corridor had finally been filled! It was the room of a third year student who is physically disabled. It is so nice to have him there, and not feel at all awkward with him about having personal assistants coming in, because he has them too!

PA arrangements are still a little chaotic. I really feel sorry for the Disability Services people; it must be a nightmare job sorting out all the timetables so that both assistants and students have the right hours, at the right times, and are happy!

Well, I'm off to set my alarm clock so that I am up and ready for the personal assistant coming tomorrow. Bye.

Thursday 25 September, 2003

Time to register today. University does offer special early registration for disabled students, but I decided that at least the first time I should do it the real way. Having heard nightmarish stories from other students of two or three hour ordeals, I arranged to meet a fellow medic at 9.00am, hoping to miss the crowds due to the large number of hangovers being slept off at that time!

Method was very successful - the whole process only took about ten minutes! Plenty of time to wander in a leisurely manner up to the medical school to purchase lab coats, gloves, and put a deposit down for a locker, in anticipation of practical classes. I can't wait 'til the actual learning begins. I have wanted to be a doctor for so long, and finally I am in medical school! It's actually quite surreal!

So £35 and about an hour later, I emerge with 1 semi-acceptable photograph taken to go on my hospital badge, 1 locker key, 1 box of gloves, and 2 white coats (larger size than necessary to make sure my splints fit easily through the sleeves).

Found the locker area to discover I have been allocated a top locker. Not a problem now, when all I want to do is toss in my gloves and lab coats, but might be hard to reach up to put textbooks in there. Did think about going to see them there and then but decided it wasn't really worth the hassle yet.

The staff at my hall are so brilliant. Due to the operation I had on my stomach I am on a 'staged diet', which basically means I am building up from sloppy food back to normal food. Being in a catered hall, this hasn't been particularly easy - but I felt it was the best option as my joints cause so many problems in the kitchen. Well, the catering staff have been absolute stars! When there is food I can't eat, they either put it in the blender for me or do me a baked potato with cheese. I was really worried about how I would cope, but it all seems to be working out!

Friday 26 September, 2003

If you were wondering why yesterday's diary entry finished in the morning, here's the reason: I spent last night serving free tea and coffee until about 4.00am, so didn't get much chance to add to it! Got maybe two hours sleep in the tent (that we were serving the tea from) then dashed back to hall ready for the personal assistant arriving!

Luckily the tent is only about a thirty second walk from my hall. After the personal assistant left, I grabbed the chance to get another hour or two kip, getting up just in time for a planned trip to the local swimming pool with a few mates. Swimming is very good exercise for me. Sadly everyone else had slept in, though.

Went to the Societies Fair later on, looking around at all the different options for how to spend my free time during this year. It was packed. Only signed up for two societies, because I'm still not sure quite how much of my spare time will be consumed by study. I signed up to be part of Rev (a Rock Gospel choir) and the Christian Union. All looks very exciting, and I'm looking forward to starting to sing again. Next week is going to be cool.
Ruth

Saturday 27 September, 2003

It was so nice to be able to sleep in 'til nearly ten this morning! In some ways I really like having to get up early during the week to meet my PA, because it does mean I make the most of my days. But when you are generally getting up at 7.30am no matter what time you went to bed the night before, a lie-in is always welcome!

It has been a fairly quiet, laid-back kind of day today. Went to the library and managed to log on to a computer and read and reply to the 60 emails I've received over the last week.

Later, I went into town with a friend. Just general bits and pieces really. It was nice to have some time to get to know someone in a less superficial way. Most of the people you meet in Freshers' Week you ask three things: name, course, and where they live. And then you promptly forget everything they have told you.

This friend is the only person I have told about all of my health problems. I guess it has come out gradually, bit by bit, as we spend more time together. It's quite nice her knowing really. No more awkward moments of being unable to do things, and having to explain why.

Sometimes I think it's great to have fairly hidden medical problems and impairments. There is no staring in the street; people just treat me as they would anyone else, which is fine for as long as I can do things that an able-bodied person can. But then when someone asks me to do something I can't physically do, I sometimes wish I had a big sticker on my forehead so I wouldn't have to explain.

It's just silly little things you have to deal with, like people glaring at you on the bus because you didn't give up your seat to the old lady who just got on. They think you're an ignorant teenager, but I know that if I don't have a seat on the bus then I stand a good chance of ending up on the floor, being as I can't catch myself on the grab rails on the way down. But they don't know that. How could they?

I wonder how often I do exactly the same thing without even realising.

Sunday 28 September, 2003

Wow! A week already! It is going so fast! Seven days and five personal assistants later, everything seems to be going pretty well so far - apart from not having heard from the LEA.

When you are at university there is an extra pot of money called DSA or Disabled Students' Allowance, which is there for disabled students to help pay the extra costs incurred in studying due to your disability. Like everything, it takes time to set up, but I was sure it would all be in place ready for when I started uni. They had my medical evidence right from the earliest opportunity (when I handed in my application form for my student loan), and my mum and I have been chasing people up. But due to people being on long-term health leave, holidays, and also less understandably general disorganisation and broken promises, the LEA still hasn't given the go-ahead for buying the equipment that my assessment suggested. Even though they promised that the letter would be sent on Monday.

Luckily for me the University has been able to lend me an Alphasmart - a notetaking machine - because I can't easily use a pen.

My parents have bought me a Minidisc recorder out of their own money, and I have a borrowed PC in my room. The PC is a mixture of bits and bobs from all over the place - church, Dad's work etc - just to get me started while I wait for my PC from the LEA. This means that when I go to my classes tomorrow, I will be able to record what's being said or type it down. But I am lucky, because my family was in a position to support me in this way and the University has been so helpful. There must be loads of disabled students out there whose families can't support them like mine have. The whole system needs to be changed so that students have guaranteed support from day one.

All I can say is that I'm pleased that Social Services have been responsible for organising the funding for my personal care. They have been helpful, swift, and had all the arrangements in place ready for my arrival. I know that every organisation has strong points and weak points, and the help that you receive will vary greatly depending upon who picks up the phone, but it's disappointing when you feel let down and that promises have been broken.

Anyway, Mum has sent some letters to people in higher places. We will see if that gets us anywhere.

WEEK 2

Monday 29 September, 2003

Wow! It's been a busy day! I can't believe it's not even 9.00pm yet. Normally I sit down to write these diary entries in the early hours of the morning, just as I am about to flop into bed. I guess now that Freshers' Week is over, the emphasis shifts from busy evenings to busy days. Not that most people's evenings are that quiet ... tonight, in fact, is the first medical student big evening out this year, but I am sat in front of my computer.

Life at Medical School seems to be about two things - hard work and heavy drinking. I have no issues with drinking. I don't drink myself, but once in a while I would love to be able to go out with fellow students. The problem is that in Britain it seems almost impossible to find anywhere to go where I can avoid cigarette smoke, a huge problem being asthmatic. Either the rules about no smoking aren't enforced, the non-smoking area isn't actually separate from the smoking area or, perhaps most frustratingly, the establishment has kindly provided a separate no-smoking room, but you have to walk through the smoky areas to get to it.

Maybe I could risk it. Maybe I could just try and hold my breath until I get to the safe room. But the question is whether it's really worth the risk. Last year, one cigarette resulted in me being ill for three months, including a month completely off college. I missed biology and chemistry coursework sessions. I had to teach myself a lot of the work for the last modules of all the subjects. It was OK to take risks back then, but I can't risk it now. This medical course is far too important. I am determined to become a doctor, and I can't risk missing work - even if it means I never get to go on a MedSoc social. I have to think about what's important to me.
Ruth

Tuesday 30 September, 2003

Another day of lots of commitments, but no real work yet. Maybe I will be longing for days with no work later on in the term, but at the moment I am really looking forward to having real lectures about science, disease, and patients - the reasons I came to university.

Today's programme was pretty interesting. We looked at the Hippocratic Oath, which doctors used to have to swear, and then looked in smaller groups at what we would want an oath to contain in the modern day.

Quite weird thinking about qualifying. In fact, it's quite weird thinking about the future generally. All these niggling questions, like when it's time to go on an 'elective' in fourth year - can I go abroad like I would love to? How would I manage with things like hair-washing? And while we're on the subject, who washes my hair when I leave uni?

Hmm, too many questions and too far into the future. I guess the best policy is just not to think about them yet. Who knows, the physiotherapy might be really successful and I may need a lot less support by the time that stage arrives. I guess even if the situation is exactly the same, it's still far to early to start thinking about it. Best to take one day at a time and deal with the stuff I need to sort out now - like harassing the LEA, and the work I'm meant to do for tomorrow, and getting some sleep. Night night.

Wednesday 1 October, 2003

My mum seems to have spent most of today on the phone to the LEA. It's been easier for her to phone them, as she doesn't work Wednesdays, and also it costs so much money to use my mobile. I have drained over £10 on my phone in the last week - this from the girl whose first £10 credit lasted four months!

Mum keeps on being given completely different stories every time she rings. You just feel so lied to. She was told today that my folder had just gone onto the desk of the man whom she spoke to over a week ago. When she spoke to him at that point, he said that he had sorted it and the letter giving the go-ahead to buy the equipment would be in the post on Monday. (Yep, that's nine days ago now - this is a slow delivery even for the Royal Mail!) She told them that she would like to make an official complaint, and they said they had just faxed the letter through to the disability services at Leeds. I went down to see them, and they hadn't received a fax. I sat there 'til almost 5.00pm, just to make sure.

Oh well, nothing I can do about it this evening.

Aside from frustrations with the LEA, what has happened today in the Land of Ruth? Hmm, let me think. Well, today was the first day I have worn clothing that doesn't hide my splints (or rather splint at the moment, as my right splint isn't back from being fixed in Holland yet). Normally I wear a tubigrip bandage, splint, then a jumper over the top - but some clothes look rather odd over the top of my splints, and also it's nice not to have to wear the 'stylish' off-white tubigrip all the time, so I pop the splints over the top.

Everywhere I have been today, people have been asking me what I did to my arm. "Oh no," I answer, "I didn't do anything to it. I have a genetic disorder that affects my joints."

"Oh" ... awkward pause ... "I just thought you'd broken it or something". No doubt, they're quite disappointed that there's no exciting story behind the metal contraptions. Maybe I should try a little experiment to find out which reply people wouldn't feel awkward about:

1. "Oh yeah, I went skiing and I fell out of a ski lift and fractured my arm in seven places. This is just to secure all the bones during the healing process."

2. "Actually, you are looking at the latest in fashion accessories. They're all the rage in New York. Have you not seen one before?"

3. "I'm a professional tennis player, and this metal brace has been used by all the big names. It's been shown to increase serve speeds dramatically!"

Hehe, I could have fun with this one!

Being serious for a moment though, I quite like people asking. It's so much better than them just staring.
Photo of Leeds campus by Richard Moran
The letter from the LEA is through! I can go ahead and order my equipment! Yippee!!!

Consuming copious amounts of alcohol considerably reduces people's inhibitions about challenging what you say to them.

Picture this. Last night, most of the residents of my corridor went out clubbing to celebrate a 19th birthday. I was left alone on the corridor with the other disabled student (I mentioned him briefly last week), but he had other plans and I had the exciting task ahead of tidying my bedroom. Thrilling, I know. A fair way into the evening, several rather drunken students turned up looking for their pal. Not believing our story that they had all gone out, they went up and down the corridor knocking on doors. Then the inevitable happened - "Why have you got such a big room?"

Now many sober people seem to find it hard to grasp the concept that you can have a disability and not be in a wheelchair, but try explaining it to six drunken lads.

What really surprised me was that they didn't consider my friend (aforementioned disabled student) to be disabled. To me it is fairly obvious that he has a disability, and I guessed that he had Cerebral Palsy when I first met him. He has some problems walking. I suppose that by having spent a fair bit of time around people with physical problems it would naturally be more obvious to me that he was disabled, but I am starting to wonder whether I have seriously underestimated the ignorance of the general public. He tells me that he frequently has people challenge him as to whether he really is disabled, whether he really needs to use that disabled seat at the front of the bus etc. And I thought it was just me!

The professor who gave this morning's lecture was very anti-smoking. He showed us a photograph of the group of students with whom he did his intercalated medical degree, and told us the only one of the twelve who had died was the one who smoked like a chimney. Don't think it will make a blind bit of difference, but still nice. Even if just one person quits because of what he said, it will mean one less person for me to dodge at doorways!

Friday 3 October, 2003

It feels like I have spent most of today at the GP's! I have had no lectures, just some self-directed work, and it's a good job, because I have needed the spare time! I spent one hour and forty minutes at the GP's surgery alone!

Who would have believed it could take so much time to sort out a repeat prescription and a referral? That's all I really wanted, but the problem with my health is that it has lots of little interesting bits and bobs. I don't have one big problem, I have lots of silly problems. These problems don't fit into categories, and a few are pretty rare in the world of Leeds Medical Student Practise.

The staff were absolutely lovely there - the problem was me, I'm just an awkward patient! I'm just glad that I chose to keep most of my consultants back home in Manchester, and only needed one referral!

Today, I finally got around to apply to BT to get a phone line put in my room for internet access. Yesterday I wasted £11 of credit on my mobile trying desperately (and failing badly) to sort it out, so it feels like a big weight has been lifted off my shoulders! If only I had known that it was so simple to sort out online!

Saturday 4 October/Sunday 5 October, 2003

As the last two days have been separated by only an hour and a half's sleep, and I had no opportunity to write my diary on Saturday, I have decided a joint entry is more appropriate! Yep, that's right, ninety minutes sleep, and I am actually feeling surprisingly awake! I will sleep well tonight though, I can tell you that!

The last two days have definitely been the best of the week! After the Christian Union meeting on Saturday night, I went out with seven others, taking food and hot drinks to the homeless in the centre of Leeds. It is so great to be able to do something to help other people and make a difference, no matter how small. I had been worried about going out - whether I would be able to avoid cigarette smoke, what I would say if someone asked me to pour hot water. But none of the homeless people we met were smoking, and because we were working in teams of four, I didn't need to pour thermoses or milk bottles. I had the official role of cup holder, sugar stirrer and custard cream dispenser!

One of the girls I was out doing the distribution with invited me back to a friend's party, with the offer of kipping on a floor overnight! Slightly random, but much, much better than going back to an empty room. So after a slight detour to collect a blanket from my room in halls, we wandered off to the party of a person I had only met twice before! Unfortunately we arrived to find the house full of smokers, but my star of a friend removed all the smokers from the kitchen, opened the back door, and made everyone shut the door behind them whenever they came in or out between the two rooms! She even sat out in the freezing night air with me until the kitchen had been completely de-fumed! She has been one of the most lovely and helpful and supportive friends I have made since arriving here. Although I felt really awkward at first about all the fuss, and just wanted to go back to halls because I didn't want people putting themselves out for me, she made me feel so accepted.

Anyway, had a cool night, met lots of new people, got to know one person in particular much better, and just generally escaped from the monotony of evenings in. One and a half hours sleep later (we did consider just pulling an all-nighter, as so little sleep seems hardly worth having!)

Sunday began with a vengeance! I went to a morning church service, and visited the house of a lovely third year medic whom I had been in contact with via email and phone, but never met before. I then got completely lost looking for a different church that runs an alternative afternoon service, but in my lost-ness I met another first year who had also got lost looking for the service!

About twenty minutes after the start time we gave up looking, and just went and had a drink outside a nearby bar. Yet another random new person! It's been so good! Most people get to meet random new people in clubs and bars, but I get to meet even more random people, in even randomer circumstances!

That's all for now. I'm off to flop into bed and make up for last night! This will be the earliest bedtime I've had since arriving, but I have to be in good shape for tomorrow. All introduction seminars over, it's tomorrow that the real university experience all begins!.

WEEK 3

We sent each of our students a disposable camera, so the photos appearing on their pages this week were all taken by them or their friends. It's also the first chance to see Ruth's new hairstyle!

Monday 6 October, 2003

I think Saturday caught up with me today! The combination of a morning lecture, warm lecture theatre and the entire lecture content being stuff we covered at A-level had a very soporific effect. Anyway, I just about managed to remain conscious for my first day. Having said that, I nearly did give in to temptation and have a nap. If I hadn't needed to queue for so long to use a computer in the library then I would have spent that time in bed!
Ruth - with her new hairstyle!
The good thing about the lecture was that we were given pretty comprehensive notes when we came into the lecture theatre, so I didn't have to type or record anything! Much easier, and also nice to not have people giving me odd looks for having my Alphasmart notetaker on my lap. I'm hoping that all the lecturers will be so organised! It will make my life much easier if they are.

This afternoon we got given all the choices of essay titles for our first SSC, or Student Selected Component. There's a massive range of topics, from 'Wild Health - Natural Medicine and Healing in Animals' to 'Are parts of the Bible a health and safety manual?' and 'How are proteins sorted to the various compartments of eukaryotic cells?' Twenty-nine choices in all, and I have to specify three preferences! If I wanted to make life really easy for myself, there is actually a genetics choice, in which: "Students will have the chance to investigate the relationships between genetic mutations and the observed characteristics/problems in a disease of their choice"! I already have copies of all the research and background information for my genetic disorder, Nail Patella Syndrome (NPS), and I've taken part in the last two studies! I even have email addresses and am on a first name basis with two geneticists who are studying NPS!

It would kind of defeat the point of doing the project, though.
Ruth in her white coat

Tuesday 7 October, 2003

Had an asthma attack at about nine o'clock this evening, and I wasn't even near any cigarettes! Just at choir, singing my heart out. Very annoying, although having said that it was really cool to listen to everyone else singing! It sounded really good and the tuning was spot on - very impressive! My friend was really sweet too and came back to my halls on the bus with me, to make sure I got home safely.

Just when I thought she could be no more brilliant or special, she produced a 100g bar of milk chocolate, which we devoured when we got back to my room! Yum! Chocolate is one of my favourite things that classes as soft food, and it's so nice just to have it melting away in your mouth. Grr, must stop talking about chocolate - I'm making myself hungry!

I met my tutor who specialises in biochemistry today. Told him about having difficulty writing for long periods because of having joint problems and it was not an issue. That's how it should be - no fuss, just the reassurance from him to shout if I need help in any way. He said that he provided handouts for most of the sessions he did, which is great. Makes my life tons easier!

I had another appointment at the Student Medical Centre earlier today, this time with the GP who specialises in asthma. I was very impressed; he had seen someone with Nail Patella Syndrome before me! That doesn't happen all too often. He hasn't changed any of my asthma medications (didn't think he would), but he has given me some instructions and advice. The medical centre is always open - they have a student sickbay there - so I can always access medical care quickly. They do provide an excellent service, not that I have any intention of ever needing to use it!

Wednesday 8 October, 2003

I got woken at half past seven this morning by a very loud alarm going off. First thought was that it was my rape alarm, and somehow I had activated it in my sleep! So I began rummaging, looking for where it might be. Second realisation: I am in a disabled room, maybe there is some kind of alarm there for disabled students and I have set it off by accident, so I begin flicking all the switches on all the walls. Then there is this loud banging on the door! Convinced this will be one of my neighbours asking me to shut up with the noise, I open the door. Oops. It's a fire drill. I hadn't been in for either of the other two fire drills so hadn't heard the alarm before! So at half past seven I was outside in my dressing gown on the front lawn, with several hundred other groggy and unhappy students! At least I was out of bed in loads of time for my PA coming.

We had an excellent lecture today on the 'attachment theory' and emotional development. I thought that I would really enjoy the psychology/psychiatry side of the course, and if things carry on the way I started, I definitely will. We get to do all sorts this year, from the psychology of disability to sleep and memory.
Good news for the day - I have heard from both BT and the company that are supplying my computer equipment, and they are both meant to be coming out on Monday! BT's letter says that it's just for a site survey, but I'm hoping they'll do the survey and fit the phone line while they are here. It has to be cheaper for them for someone to only come out once, and it'd be ace if I had internet access in my room by this time next week! Luckily I have a really quiet day on Monday, with only one lecture, so I can sit in my room all day and wait for them to turn up! Must make sure I have loads of work I can do here.

Thursday 9 October, 2003

Thursdays on my timetable are officially the longest days on earth! Admittedly my friend actually has an eight hour day on a Thursday, when I only have seven hours timetabled, but after three months of my brain slowly turning to mush over the summer holidays, seven hours is more than enough! At school you get a nice twenty minute break in the morning, plus short breathers every hour or so whilst changing lessons. Yesterday I had a solid three hour block of 'Amino acids, phenylketonuria and penicillin', working in small groups with no breaks at all! I know that the working world will be like that, and I won't have breaks for longer periods, but I really struggle to remain interested in peptide bonds for so long!

The long tiring day was brought to the perfect end by a fire alarm at about 11.15pm. It turns out that the alarm that had gone off was the one in our corridor, and it had gone off because some people (post drinking games, pre-going out) earlier in the evening had sprayed the fire extinguisher at the ceiling, and the water had gone through into the fire alarm! We all evacuated the building (some people wrapping themselves in quilts!) and sat outside in the cold watching the arrival of not one, not two, but three fire engines with blue flashing lights! The general hall policy for things like this is that the fines and damages incurred are split between the whole corridor, but everyone on the corridor has been lovely and agreed that only the people who were messing around with the fire extinguisher will pay up. The people responsible are going to tell the wardens - they will appreciate the honesty, I'm sure.

Friday 10 September 2003

My splint turned up back from being repaired in Holland today, in a box full of those polystyrene pellets! Very exciting. I am keeping the foam pellets, as I'm sure I will find a use for them at some point! It felt weird to have the splint back, but a good kind of weird. I know that the more I wear the splints, the more chance my arm will straighten, the straighter my arm might get, and the quicker it will all happen! It's cool to be symmetrical again too!

All week I have been typing notes on my Alphasmart in lectures, and I had been starting to worry that I actually had rather a lot of information on this little machine, so I decided the time had come to pay another visit to disability services. To take the information off the Alphasmart you plug its lead into the keyboard port on the back of a PC. Unfortunately it doesn't seem to work with my PC, so I have to go bother them every time I want to transfer notes onto a floppy disk. There were 13 pages of notes when I finished! I was going to keep a paper copy of all my notes, because I don't trust computers in the slightest, but maybe I will just keep a back-up! It will cost me a fortune in paper and ink otherwise!
I think I'm coming down with Fresher's Flu (Fresher's Flu being an all-encompassing term used loosely to describe any infectious ailment that a university student suffers from during the first academic term!) If I'm no better on Monday I will have to make an appointment to go back (yet again!) to the Student Medical Centre.

The idea of this next stage of my life was to spend lots of time amongst doctors as a colleague and student, not as a patient. I hate bothering them, and I will only go if I'm sure I'm not wasting their time.

I spent an hour in the computer cluster today, most of the time replying to a huge email from my mum! I have discovered that my handy little swipe fob, which means I don't have to struggle with the heavy doors, also gets me through doors that other keys don't open! It is now only a 30-second walk to the nearest computer cluster, rather than a 3-minute walk down three flights of stairs and back up another three flights. This might sound really silly, but I actually feel a little bit guilty about doing the quick route. I am capable of going up and down the steps, but what is the point when I am allowed to go the quicker way? It's not like I'm causing anyone any harm, breaking any rules or preventing someone else from using the disabled route. There is still this little feeling of guilt though.

Sunday 12 October, 2003

A lad called Nick asked to look at my knees today.

Not quite as random as it sounds if I also tell you he's a third year medical student, and we were talking about my genetic disorder - Nail Patella Syndrome (patella meaning kneecaps). It was funny though!
Ruth with Mark, who lives across the corridor
I really like talking to other medical students about my genetic disorder. Increasing awareness is really important, and I'm sure it will also mean that less cases go undiagnosed. It's not uncommon for NPS to be misdiagnosed - mine was originally. Hopefully that memory, shoved to the back of the brain - and hopefully not shoved out by all the biochemistry! - will surface if they ever meet a patient with it. I do think that you learn best by seeing things in the flesh, rather than out of textbooks.

It's getting exciting now! This time tomorrow I may have all my equipment in and set up! I may even be able to type tomorrow's entry on my laptop, then email the week's diary from the comfort of my own room! I'm not getting my hopes up too high. If they don't come, at least I will have got a lot of work done while sitting around in my room waiting for them!

WEEK 4

Monday 13 October, 2003

My equipment came today! Almost everything arrived, and the delivery men were either on time or early! It's brilliant! I am still waiting for the disk drive for my laptop (I am getting an external drive of some type, so that it cuts down on the weight of the laptop I am actually carrying around). My room was a sea of brown cardboard boxes! I feel all set up now, and it was such a lovely feeling to be able to return the Alphasmart to Disability Services! I'm sure they'll be glad to be seeing less of me!
Ruth
In the Medical School they run a family scheme, where all the first years get second year 'parents'. The idea is that they form some sort of pastoral support network, having occasional 'family' meals, giving advice, borrowing lecture notes etc. It's a really nice idea, although I'm not sure I'd want to be related to every single member of the medical school (no matter how distant and convoluted the relationship)!

I couldn't get involved in a lot of the 'getting to know each other' activities arranged in the earlier weeks because of the cigarette smoke, but my 'parents' (I have two mums, as the medical school is about 70% female so lots of people have single sex couple parents!) invited me, my 'brother' and an adopted 'sister' around to their house. They have been so lovely and helpful and understanding about everything. When one of them was rather drunk she kept on saying, "It's OK, I know what it's like. I get it sometimes." I presume she was saying that she occasionally has problems with her asthma. Whatever she was trying to say, she was being very sweet, and it was very funny!

Tuesday 4th October, 2004

Didn't feel well again today; definitely Fresher's Flu. I'm not the only one on my corridor to have succumbed - most people are ill or have been ill at some point in the last three weeks. Not a particularly healthy place to be! Made it to all the timetabled commitments (9.00am start again), but flopped back into bed after retrieving my coat from my 'mum' (I managed to leave it at her house last night). Slept through lunch, finally waking up only ten minutes after they had finished serving it!

There are definite advantages to my soft food diet. I have got to know the kitchen staff rather well, so when I turned up ten minutes late, looking rather pathetic and ill, they still fed me!

Went back to bed this afternoon, so that I would be fully fit for this evening's choir rehearsal. It was really nice to listen; they sound really good. My friend over the corridor came along and seemed to enjoy it, which was great. I always worry when I recommend things that people will think they are rubbish!

Discovered today that it's no more expensive for four people to take a taxi to and from choir rehearsals than to get the bus. The whole journey is a slightly more pleasant experience in a taxi ... hmm, let me see, warm door-to-door service with little waiting around versus waiting half an hour in the cold to finally squeeze onto a packed bus with no seats free, very conscious that every time you bump into someone they get jabbed by your metal splints, and that if the bus brakes suddenly you are going to land on top of the art folder of the person next to you and probably destroy three years worth of work. I think we may be taking a taxi most weeks!
Photo of Leeds by Richard Moran

Wednesday 15 October, 2003

Wow, it's been a quiet day. Laptop has got a lot of use today. The battery seems to last about four hours, which was perfect for today, but I guess it means I will need to use a combination of techniques on days like Thursdays, when I have seven hours timetabled. Got the chance to tell a few more people about my genetic disorder (Ruth's new mission: educate the world about Nail Patella Syndrome!) and saw a friend who lives at Bretton Hall who I haven't seen since the end of August. Still feeling a bit tired and ill, so an early night is in order.

Tuesday 16 October, 2003

Today was the day I had been dreading. A 9.00am lecture, followed by a three-hour practical in the labs with no breaks. Lunch, during which I had planned to either go to Hindi lessons or prayer lunch, and then three hours timetabled for Personal and Professional Development (PPD) group work. In fact, it all went much better than expected! The 9.00am lecture was a clinical one, looking at heart attacks. The practical was in pairs, so my lab partner gave me a hand with anything I didn't find easy to do.

And the big news is that the lab practical actually worked! I think both me and my lab partner were pleasantly shocked to get the results we were meant to get! Lab work has never been my strongest point. I reckon I might be able to do the timetabled practicals without support. I know it's there if I need it, but I'm determined to do this as independently as possible. This is excellent!

Nicest bit of the day: a very special friend said today that if I wanted to, I could live with her next year. She knows the problems I have and the help I might need - for instance, with cooking etc. You may all be wondering why on earth I am thinking about next year already, but in studentdom people start searching for houses in January ready for the following year. Four weeks are nearly gone, and that means we are more than a third of the way through the first term. Not that long 'til decisions need to be made. I'm not going to rush into anything, but it's just nice to know that maybe there are people out there who would put up with me. It would be much better than staying in halls for a second year (no offence to the lovely staff if you're reading this!)
Ruth

Friday 17th October, 2003

Nice day today! Morning lecture was cancelled, and this afternoon I took the IT test that will hopefully exempt me from Friday afternoon IT lessons! It was one of those tests that you can take at any point during the series of sessions, so I took it at the earliest possible opportunity - it will be so good to have free Friday afternoons!

So, what did I do with my free time? Tried to sort out the broadband I'm getting, but got completely confused. How am I meant to know if I have an ADSL phone line or not? My parents are coming up tomorrow, so I'll leave it for my dad to sort out. He always knows the answers to those kinds of questions. I don't even know what ADSL stands for!

Ooh, one nice thing that did happen was I got an email from the Medical Teaching Centre office staff ...


Hi Ruth,

Are you the student who is keeping the online diary? If you would like a lower locker on level 8, we will find you one.

Call at the MTC office any afternoon.

Regards ...


How about that! I hadn't wanted to go and bother anyone - in fact, I wouldn't have even known who to bother - but they had read my online diary and found me by guessing at my university email address! I now have a bottom locker, which will be much easier for me.

I had planned to just have a quiet evening in - maybe some work, see a friend - but the lad across the corridor with CP was going out to the cinema, so I ended up going out with him, one of the PA's and another girl from my halls to see The Italian Job. It was really nice to go and do something different; I haven't been to the cinema in ages! With the student reduction, it's not too expensive either (I managed to avoid temptation and resist the bags of Minstrels!)

Last activity of the evening - tidying my bedroom before my parents descend tomorrow. It's not an absolute tip or anything, but it's starting to creep towards disorder, and I'm so messy at home that it would be quite nice to shock them!
Leeds

Saturday 18 October, 2003

It worked! The first thing mum did upon entering my room was comment on how tidy it was! Yeah, it's been like this all the time mum, honest (smiles sweetly with fingers crossed behind back).

They had come across mainly because my DLA (Disabled Living Allowance) is up for review after the two years since the last time. It's a bit weird, actually - you have to put down the contact details for your GP and consultants so they can contact them about you, but I have only had my present GP for three weeks. He wouldn't have a clue about how my genetic disorder affects me, or about any problems it causes me. I don't want to waste NHS time by making an appointment with the GP just to fill them in on what I can and can't do, but I may have to. Oh well, we will wait and see.

After Dad had sorted out some computer stuff for me, we all went into Leeds. I took them to buy a drying rack for my clothes, which I would have struggled to carry back, and also a lunch box, in the hope that I may be able to arrange a system with the kitchen where I can have a cold jacket potato or something for lunch some days. At the moment I can't go to any of the lunchtime activities that I want to (well, I can, but I have to go hungry if I do!) because I have to come back here to have my jacket potato and cheese. So I am going to ask them if they could make the jacket potato at breakfast time, or the night before, then I can have it cold in a lunch box to take with me.

Sunday 19 October, 2003

Confessions of a diarist: While my mum was here yesterday, she found out various things that I have omitted to mention in the diaries over the past four weeks. As these updates have been her main way of keeping up with what's been going on in my life, I was reprimanded for their omission, and she thinks I should confess them to you too. So here are a few things that didn't make it into the diaries that my mum thinks you would all find amusing.

Number three on the chart of embarrassing occasions: getting stuck in my jumpers. I sometimes get clothes on, and then realise I can't get them off again.

Number two: not realising I can't get the jumper off 'til I am half way through trying, and then being unable to get it back on either! This generally results in wearing the jumper in the new (fashionable!) way, one arm and my head in, one arm out. For anyone trying to copy this style, it works best if the unused jumper sleeve flops over the front, like a scarf would.

And number one, the one you are all waiting for (I can feel the tension): having to dash out of the canteen up to three times in a single meal because the food I am trying to eat gets stuck. Yep, up to three times. I omitted this part originally, as I thought it was in rather bad taste to discuss having to cough up the food that had got stuck, but I was out-voted! Admittedly it is rather funny, and my parents found it particularly amusing that I was so excited to discover a new toilet closer to the canteen. Before, the only other one I knew involved going through the (smoky) bar - which isn't good for my asthma - so this toilet is much better!

Well, I guess this is it! My four weeks diary-ing are over. It's been fun, and I hope you have been amused, entertained, informed - or at least that it's been a good way of wasting time whilst you were meant to be working / studying / researching for your dissertation!

To any disabled students out there wanting to go to university, and in particular anyone who wants to study medicine - go for it! Find out what help and support is available, research which universities you apply to carefully, and don't always listen when people tell you no. Find the solutions before you tell people the problems - don't give them any chance to unnecessarily discriminate. Finally, find the people out there who are for you, not against you. They are there, just maybe not that easy to find! Finally, if anyone wants to get in contact with me and ask any questions, that's cool - I'd love to hear from you!

I guess it's time for me to go back to the real world. Four years and twenty six weeks to go, and I could be treating you when you come into hospital! That's if they let me practise ... but I'll cross that bridge when I come to it. I can't wait to get out there and work with people, for people. Better go do some work, I guess!

Bookmark with...

What are these?

Live community panel

Our blog is the main place to go for all things Ouch! Find info, comment, articles and great disability content on the web via us.

Mat and Liz
Listen to our regular razor sharp talk show online, or subscribe to it as a podcast. Spread the word: it's where disability and reality almost collide.

More from the BBC

BBC Sport

Disability Sport

All the latest news from the paralympics.

Peter White

In Touch

News and views for people who are blind or partially sighted.

BBC Radio 4

You & Yours

Weekdays 12.40pm. Radio 4's consumer affairs programme.

BBC © 2014 The BBC is not responsible for the content of external sites. Read more.

This page is best viewed in an up-to-date web browser with style sheets (CSS) enabled. While you will be able to view the content of this page in your current browser, you will not be able to get the full visual experience. Please consider upgrading your browser software or enabling style sheets (CSS) if you are able to do so.