Road trip.

Tomorrow, me and my mother are taking my sister up to Cambridge, for the start of her university term. They start a bit later than most of them yes, but that's the nature of Oxbridge.

My concern is that I appear to have spent the past 2 days almost immobile, and while I'm half looking forward to having a bit of a change of scenery, and being able to see a few shops etc, the other half is dreading the fact that we're going to be away for 4 days, driving on every single one of them and doing more activity each day than I'd normally do in about a week.

We've decided to take 4 days for the journey because of me, so we can limit the amount of driving time to 3 hours a day, and we can stop as many times as we need to and stop at places like Bristol Cribbs Causeway and possibly Ikea. We'll stay with my uncle tomorrow night and Sunday night, and stay in a hotel in Cambridge on Saturday night.

I am worried that the only hotel we could get in Cambridge is quite a way out, so we won't be able to "pop back" if I need a rest, and as anybody in the same position will know, resting in a coffee shop isn't the same. While it's better than nothing, its not the same as being able to properly relax and recuperate.

My university options...

Since I'm in technically the beginning of year 13 now, even though I haven't been at school for about 5 months, and the last year before I leave school, the options for further education have been rammed into our faces for many months preceding this. Since I go to a grammar school, most of the pupils I would say want to go onto university,(obviously I can't prove this, I don't know everyone) and this is the case for myself as well. Before I began the process of the application (which is a nightmare in itself) I set the check list that I was going to base my options on.

The universities had to:

- be reasonably close to my home town (Plymouth) or the south west in general, or at least simple to get to in case I fall ill etc while I'm away

- do the course I want to study (ancient and modern history) and do it well (obviously)

- be a campus, so I don't have to traipse into a city centre to get anything, especially if I'm unwell

- have good health services around the city, and if possible a specific student medical centre on the campus

Despite these relevant and reasonable points, it was noted that I would have to apply to cities for the best case scenario as well as the worst. So there is somewhere with higher grades if my illness and pain gets sorted and I can manage almost like normal when I get back to school, and also with lower grades in case I fall ill before I leave or don't recover as well as is hoped.

Once I'd got into the mindset that I didn't have to limit my options, I had a visit from one of my friends. She wants to apply for something similar to me, so she brought me some information about places that do history with the added unusual bits that we wanted, and in that pile was Nottingham. A few of my friends have been there to open days, and were very impressed by the beauty of the city and the helpfulness of the staff and students, and I got the same impression on their website. It sounds ridiculous to be able to get the feel of a place from their website and the prospectus, but the website has all the information you'd ever want and more. They had virtual tours of all the accommodation, and details about all the transport around the campus and to the city centre, which is a few miles away but with frequent buses.

And in the ancient and modern history course, there's a module called "swearing and cursing in ancient Greece." Who doesn't want to study that?!

Also on my list is Bath Spa university. Bath university does all the sciences etc, so Bath Spa is all of the humanities and arts, but it doesn't do a course including ancient history, which seems odd seeing as the whole city is surrounded by it... But the city is great, and is home to the Royal National Hospital of Rheumatic Diseases, and the National Youth Pain Services, so I think I'd certainly be well taken care of there. Also you can get a direct train from Plymouth which takes about 2 and a half hours, the same as driving.

That benefit also transfers to one of my other choices, Reading. The course is ancient and modern history but seems mainly focussed on the ancient side, and there's a direct train from Plymouth.

The way the UCAS applications work is mainly over the internet. There are a lot of questions to answer, about your family and your choices (you can pick up to 5) and then a question on illnesses and disabilities. Ah. It had options for "physical impairment or mobility issues", and one for "long standing medical condition or illness", but none for one of each, so I've had to select "You have two or more impairments and/or disabling medical conditions". And then it asks you to explain them. There the problem arises. I doubt they will appreciate me writing "God only knows" or "your guess is as good as mine" so I've decided to leave this box blank until Lupus and some form or rheumatic arthritis are either confirmed or denied.

Once you fill out this form, you have to add in a personal statement, which is basically 40 lines of selling yourself, saying what skills you have and how they will help you in the course, and why they need you at their university instead of anyone elses.

Later on, based on all this and your teacher comments and predicted grades (lord knows what mine'll be like, last time I checked they were B's and C's, but then again that wasn't influenced by these last exam results, that were remarkably good considering I've been so ill, so hopefully my predicted grades will go up. Anyway, once the universities have gone through all that, they'll decide whether they want to offer me a place (either conditional, based on my results or unconditional, regardless of results). The problem I face then, is once they've decided whether they want me, you have to choose 2, one as your firm choice, and one as your insurance choice, if you don't get the results you needed for your first choice.

Assuming I get an offer from all the places I apply to, I will probably choose Nottingham as my first choice (asking for ABB) and Bath Spa as my insurance choice (asking for BCC). If I get the grades for Nottingham, it will be amazing, seeing as I was ill all the way through my GCSEs with my back problems, and have been severely ill through my A levels, but my annoyance with this system is, if I manage to get those brilliant grades, what if I fall ill before I got the results and decided that I'd be much better off in Bath? As far as I've found out, I'm not sure there's any way to get around this, as it seems that you're almost contractually obliged to take the place... I'm sure I'll figure it out somehow.

Day to day as the undiagnosed...

I spent yesterday at home, as I usually do, pottering about and such forth for the whole day, feeling generally rotten. I have the school and my friends sending work back and forth for me, as I've been off school for about 4 months now, but it's difficult to feel up to sitting up and writing, and trying to take in what you're writing down. Generally when I feel really ill, the sort of ill where you feel so terrible that you can't really sit down, I'll either bake, or do art homework (there's always art homework), and that's what I did yesterday.

Generally, when the weekend comes, it means I'll be encouraged to eat much better than I do when I'm home alone during the week. I don't do anything, so usually I'll have a few biscuits with my tablets first thing, and have a bit of bread at lunchtime, and then have a proper meal in the evening, when I'm more likely to be hungry.

So today my mother and I rose early, and we arrived in town at about half past 10, so we'd be able to avoid the rush in town, as it were, because sometimes getting into town is enough effort without having to deal with every single person who lives in the city running past you as well. We happened to meet some friends in town, friends who have had serious illnesses before themselves, not the same as what I have, or they suspect I have, but as she said: "being ill like that puts you in a different mindset to other illnesses".

Back to the MAU

Just seen the ICU navy doctor,(he has a special interest in tropical infections, I'm not that critical) he was very nice and good. Says he doesn't think it is something from india that's affecting me, but he's going to send a battery of blood tests to places around the country to test for all the odd sounding diseases you can get from india.
It's very helpful having friends in the nhs, they can chase up follow up appointments internally for you :) apparently they got an internal email from the medical assessment unit asking if anyone had notes for "miss D H" because they'd lost them. That entertained me somewhat :)

The beginning...

With this post, I'll try and explain what has gone on with me, up until this point.
When I was 14, in the summer of 2007, I fell down some stairs in my house, and soon after I came down with terrible severe back pain. It was a couple of months before we saw a doctor about it, because we'd just assumed that it was due to the fall and would go away, but it didn't, and still hasn't 3 and a half years on. We had always assumed the pain I was having was related to the fall, but now we're not so sure. We're thinking it may have just been a coincidence.

After a long while, I had an MRI scan, which diagnosed me with a minor slipped disc, and wasn't until I was admitted to the hospital that one of the consultants noted that the pain I was in was disproportionate to the supposed injury. From there I was referred to about 17 people at once, all of whom found nothing. From there I was sent to physiotherapy (again) and the pain clinic. The pain clinic manages all the people who are in pain, but no-one can do very much about it, which includes chronic pain syndromes, and things like fibromyalgia.

As all the investigations for my back problems were slowing down, I went on a trip around India for 3 weeks. While I was there, I developed an odd rash on the backs of my hands, which given the temperature, I assumed it was just an odd heat rash. Before I left I'd been diagnosed with Reynaud's phenomenon, costochondritis and a few other joints had been painful. 3 weeks after I returned, I fell very ill, with a high temperature, extreme fatigue, hair loss, mouth ulcers and nausea. I was immediately referred to a rheumatologist who did a battery of tests which revealed my ANA was positive, a marker for lupus, and along with all the symptoms it seemed very likely. They've started me on some medication which takes 3 months to have any effect, but it doesn't cover up other diseases, as they still think there is a possibility of a tropical infection/disease from India. If I had lupus from before I went to India, as it would seem from the symptoms I had before I left, the conditions and bugs probably made it worse for it to be affecting me this much now. Since I've been ill, I've missed 3 months of school and I'll still miss another while yet.

Since we have seen the rheumatologist, the idea has arisen that some variation of rheumatoid arthritis is affecting my back and other joints, and I have a worrying suspicion that I share a lot of the symptoms of Hughes syndrome, one of the associated conditions of lupus, and possibly sjogren's as well... It may sound like I'm a hypochondriac but once you see the symptoms in yourself, and so many other people with lupus have these things as well.

I'm seeing an intensive care unit doctor, with an interest in tropical diseases in the medical assessment unit tomorrow. Hmmm.