Looking back at a year of reading 2023 edition

End of another year, and time for another end of year reading retrospective from me, looking back at the books I read for fun in 2023. I adore reading, despite my progressive neurological disease meaning that I am often heavily sedated, and struggle hugely with print. Most books are read with an utterly gigantic font on my Kindle. But I gobble up books. I even have a PhD in historic Scottish reading habits, so it’s nice when I can gobble up books myself, and not just stare longingly at past historic readers who in some cases could read more than me!

This year I finished 60 books, almost 20,000 pages read, average 375 pages a week. Of these 42 of the books were fiction, 17 non fiction, and 1 a poetry collection. Here is a link to my full list for the year on Goodreads. And the picture below shows a glimpse of some of the books I was reading over the months.

20 of the books were fantasy genre, and 7 graphic novels or manga or comic books. Fantasy remains my favourite genre by far, and I can still read and enjoy graphic novels and manga despite my neurological problems with print. 8 books I would categorise as historical fiction (with some overlap in cases with the fantasy count), but just 6 were scifi. I read some scifi – especially Doctor Who novels – but am not a fan of hard scifi. Despite adoring since childhood first Star Trek and then Doctor Who, Babylon 5 and others. But reading is mostly about fantasy for me. I also have a fondness for children’s or YA fiction from time to time, and read 9 of those this year, ranging from old classics to modern. Only 5 of my reads this time were horror genre.

In some recent years I’ve reread a lot of much loved novels for comfort. There was less of that this year, though I reread a few, such as my annual pre-Halloween read of Roger Zelazny’s A Night in the Lonesome October. I continued my slow Wheel of Time read, with 3 more novels in that series – up to the end of number 7 now, and hoping for another couple next year. Though I’ve tended towards shorter rather than longer novels. I also read some novels for the book club I’m in.

I am surprised by how many non fiction books I gobbled up. I read these alongside fiction, flitting between the two night to night. And I had some really good non fiction reads this year. In fact when I look at my top rated books and think about which books made the biggest impression on me in 2023 it’s 3 non fiction books that stand out most.

The first two were read at the very start of the year. Firstly Mensun Bound’s The Ship Beneath the Ice: The Discovery of Shackleton’s Endurance, which was a very rare in print read for me, after I managed to nab a signed copy from my local bookshop in Broughty Ferry. Even knowing the ending of the story this was still a gripping page turner. And I cried tears at the end. Another tear jerker, though happy too, was Rob Wilkins’ Terry Pratchett: A Life With Footnotes: The Official Biography. Which was a deftly written biography of a much loved author, and so phenomenally insightful. I was delighted later in the year when it won the Hugo Award for best related work.

The third standout non fiction book was The Climate Book, written by Greta Thunberg and many many others. This is probably the most important book I have ever read. Certainly the most affecting. It’s devastating in many places, but something I needed to get to grips with. And there are seeds of hope in there. But yes, just read it.

Although my favourite books were non fiction I’d like to mention my favourite fiction books of the year too. Firstly Legends & Lattes by Travis Baldree, which was a cosy fantasy, combining a traditional fantasy world and characters with the comfort of coffee shop culture. So good! Another standout was Bob Mortimer’s comic novel The Satsuma Complex, another award winning book, which had more than a hint of Douglas Adams about its writing. It felt almost like another Dirk Gently book. And so very very funny. Finally, classic scifi The Technicolor Time Machine by Harry Harrison sees a film crew go back in time in a time machine to film a Hollywood blockbuster, with totally authentic scenery and cast – real Vikings! This was utterly bonkers. A joy.

Looking ahead to 2024 I’d like to reread The Lord of the Rings, and also Our Mutual Friend by Charles Dickens – both some of my most favourite books. And long books, so I’ll be aiming more for quality than quantity. Would also like to get through a couple more Wheel of Time books. And read more books in translation. But yes, just keep reading!

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Looking back at past inequalities in PhD funding and support

I’ve been taking part in an interesting Twitter thread today about problems faced by non affiliated or barely affiliated academics, essentially independent scholars without university support, including financial. It digressed slightly into different funding arrangements for postgraduates. I remembered how during my Dundee history PhD (2003-2010) many Scotland-wide PhD training events were for a long time only open to funded PhD students. I was initially unfunded for my history PhD, but later won AHRC funding. Even then as a part timer I got no stipend, unlike full timers. My PhD supervisor campaigned with others to get AHRC to provide stipends to part timers. This happened in time for me to benefit before the end of my PhD. As a part timer I was also initially ineligible for the Disabled Students Allowance, which at that time could only go to full timers. Fortunately that changed too. To be fair this is a long time ago, and much has changed. But still.

I could also go off on one about the poor support for me as a computer science PhD student from EPSRC when I fell long term ill. But that’s another story …

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Thoughts on World Book Day, childhood reading and having done a PhD on reading habits

Today is World Book Day 2022, a celebration of reading in the UK and Ireland, targeted especially at children and young people. It is a day for celebrating the power of reading, but also for showing youngsters how they can access it and benefit from it. And I am a big fan.

I was an enthusiastic childhood reader, with early visits to Melrose public library, and still remember borrowing Enid Blyton books and Tudor history. Then when we moved back to Hawick I devoured first the children’s basement floor of the Hawick public library – a grand Carnegie library with lovely architecture – and then was allowed to borrow from the “grown ups” section. There I devoured masses of Agatha Christie books, science fiction and fantasy, as well as doing research into my family history in the research part of the library. I also borrowed books from primary school and secondary school libraries, and the Wilton church Sunday School small library.

Years on reading is much harder for me, thanks to a progressive neurological disease that struck in 1994 when I was just 22. Soon I could no longer easily manage print for extended periods, even large print was troublesome. But then eBooks came along, which I could adjust to have a quite ginormous font, and I was reading again. I adore reading, and on my Kindle usually have a couple of novels on the go, as well as various non fiction books. All read with a gargantuan font that lets me keep reading. I pick up a lot of bargain eBooks in sales, and also read free ones from Project Gutenberg.

However World Book Day has a special significance for me now because between 2003 and 2010 I completed a part time PhD at Dundee University on Scottish reading habits between circa 1750 and 1820. This was a surprising route to take. I’d studied first computer science at university until my illness struck. Then I retrained as a historian. But I was not in any way a literature student.

I worked part time as a research assistant 2003-4 on Bob Harris’s Scottish Small Towns Project, working on the pilot study in Angus. And among other things this introduced me to the history of reading and book history, as I uncovered the history of cultural activity in Angus in the 18th and early 19th centuries, including the spread of libraries, newspapers and bookshops. I discovered that library borrowing records existed rarely in Scotland (though since then more have turned up, all welcome!) and how researchers like Paul Kaufman had showed these could be analysed. And I was entranced.

At the same time I was completing a taught MPhil degree and pondering if I wanted to try for a history PhD. And I couldn’t get away from wanting to research reading habits more. Bob Harris agreed to supervise me, and I started a self funded PhD, though later won funding from AHRC for the rest of my part-time PhD. My approach was very much social and cultural history rather than literary, as I got to grips researching what Scots were reading and how they fitted this into their lives in the late 18th and early 19th centuries. Magic, though with my own reading problems due to illness/disability I was frequently envious of how “my readers” in the past were managing to access books!

My PhD thesis is online and freely available for all to read. In a nutshell though it showed how reading was growing in Scotland in this period, and how important reading was as an activity throughout the country and at all levels of society. A very positive thumbs up for reading.

So whenever World Book Day comes around I think back to my historic research in this field, while at the same time looking forward to my future reading. I am so lucky I got to complete a PhD on this topic. And so grateful I can still read, albeit with considerable adjustments, and a gargantuan font, thankfully helped hugely by adjustable eBooks.

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20 years since starting postgraduate history study at Dundee University

Autumn 2021 will mark exactly two decades since I started as a postgraduate history student at Dundee University. I thought it would be nice to reflect back on my experiences then. Not least because it was a life-changing step for me.

Originally I was a science student at St Andrews University, and started an EPSRC-funded computer science PhD in 1994. But at the same time I started to develop a progressive neurological disease, aged just 22, which would mean that I had to drop out of the science PhD.

After then I fought for proper diagnosis and treatment, which I got in 1997. The treatment which started then – and has continued – was for many years extremely gruelling chemotherapy, leaving me feeling nauseous and vomiting for much of the time. To take my mind off that I started studying part-time with the Open University. From 1998-2000 I studied history and classical studies, picking up a BA(Hons), helped by credit transfer from my first degree, letting me effectively jump straight into second year. But what to do next?

The Open University offered a taught postgraduate Masters, but one I couldn’t study more quickly than over three more years. Given my life-threatening disease I wanted to get on with things quicker. At the same time full-time study was totally out of the question, given how ill and increasingly disabled I was becoming. This ruled out postgraduate taught history study with St Andrews University, who in 2000 (and shockingly still in 2021) only offered full-time study options.

Fortunately Dundee University – another local university for me (we lived in Cupar at the time) – offered a part-time or full-time taught MPhil degree that could be studied part-time over two years. This course was timetabled to support part-time students, being based around Wednesday afternoon taught seminars for the first year, helpfully followed on the same day by the weekly departmental history research seminars attended by staff and postgraduate students. Over the summer months full-time Dundee history MPhil students would work on their research projects and dissertations, while part-timers were allowed the next year. The overall subject matter of the Dundee history MPhil was Cultural and Urban Histories 1650-1850, using the idea of the city or town as a “laboratory” to explore cultural and other themes. A particular emphasis was placed on Dundee as an example, but other Scottish towns and cities were covered, as well as places in England, mainland Europe, and North America. Good stuff.

The course – and particularly its teaching lead Charles McKean – was a warm and welcoming experience. Also intellectually stimulating, introducing me to the field of urban history, which I found fascinating. For the assessed essays and mini projects I would often draw upon examples from my own family history or local history from the Scottish Borders, my home area. For my year-long dissertation I worked on 17th century Melrose local court records, which involved my ancestors, even a g..uncle judge. I worked from voluminous already transcribed records, building a huge computer database of thousands of court cases, and wrote an analysis of these for my dissertation.

Part way through my MPhil I started working – again very part-time – as a research assistant on Bob Harris’s new Scottish small towns project. My contract was for a year, doing the research locally in Angus and in Edinburgh for the pilot study. Sadly my neurological disease relapsed hugely just after that year, so I couldn’t continue working on the project in its main phase. But the experience deepened my appreciation for urban history, introduced me properly to the fascinating period of change 1750-1820, and also led me to the topic reading history I would research for a part-time history PhD, again at Dundee University.

I’ve blogged before about my experiences as a history PhD student, so won’t cover all the details again. Suffice to say the Dundee history department continued to be a nurturing and stimulating environment to conduct postgraduate research in. My supervisors Bob Harris and then Charles McKean were phenomenally supportive, and as a disabled student – indeed one who was becoming increasingly housebound and disabled as time went on – I felt the university was extremely helpful, making adjustments throughout my PhD and vital practical measures for the viva. Winning AHRC funding part way through my part-time history PhD also helped hugely. By the end I was studying for no more than 5 hours total a week, just way too ill. But I completed the PhD within the 6 years allowed part-time. No extensions were needed, and just a 5-month official medical break, which helped hugely when I was going through a major health crisis and couldn’t study at all for that period and needed total time out.

Although I couldn’t work in academia after my PhD – just way too ill and increasingly disabled – the Dundee history postgraduate study established me confidently as an independent academic. I’ve since had numerous published journal papers and book chapters, and continue working on new research projects. For practical reasons I focus very much on research and writing that I can work on at home, but the wide-ranging training I got at Dundee, and especially in the taught MPhil course, gave me the skills and confidence to continue to flourish as an academic, in both familiar and less so subject areas. I am also very grateful to have been awarded an Honorary Research Fellowship in History by Dundee University in the years since my PhD, which facilitates my academic research, especially in terms of publishing new papers.

My gratitude to Dundee University and particularly its history department is immense. Thank you so much for giving me a fresh chance.

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A female ancestor borrowing books in 18th century Haddington

It’s International Women’s Day, and the Books and Borrowing 1750-1830 project I’m involved with blogged today about women borrowers in libraries.

I studied such records as part of my PhD examining Scottish reading habits between circa 1750 and 1820. Women are largely hidden as readers in historic library borrowing records, especially in libraries which restricted access to men. But sometimes they show up as borrowers directly, or it is recorded that a book was borrowed on their behalf. Other female members of the family may potentially have read any other book borrowed from the library.

At Haddington’s Gray Library which I studied female borrowers make a prominent appearance, and their borrowing patterns can also be compared with male borrowers at the same time. For example it’s possible to detect that they were borrowing on different days of the week from men, and that they also tended to choose a different pattern of books. For full details see my Journal of Scottish Historical Studies paper on this, which is available free in open access form.

However for this blog post I want to focus on one female Haddington borrower in particular. Jean Veitch (ca1770-1804) was my 5xg-granny, the daughter of a watchmaker in the town, and granddaughter of a Border laird in Peeblesshire and Selkirkshire. Jean first appears in the Haddington library’s borrowing records in June 1785, when she was about 15, and her father William started to borrow books for her. Over the following months he borrowed several volumes of Fielding’s Works for Jean. At this time the library asked that anyone borrowing especially for someone else note that when they took out the book. This rule may not always have been followed rigidly though, and it is possible that William borrowed some other books for his daughter over the following years.

In December 1790 Jean is first recorded borrowing a book in her own name, a volume of Cook’s Voyages. A week later she borrowed a volume of Pope’s Works. This was the last mention of her in the record.

Jean married in 1794, to my 5xg-granddad Richard Somner. For more on her life story see my blog post about her.

Also potentially of interest is my blog post about her grandfather James Veitch of Glen and Bowhill, including the extensive library of books he left when he died. I don’t know if any of these passed down to his watchmaker son in Haddington.

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Ten years since PhD viva

March 31st 2020 will mark exactly ten years since my successful history PhD viva. I thought it might be nice to reflect on how the subsequent years have gone, and where things stand now for me, in academic terms.

I live with a severely disabling neurological disease, which struck in 1994 when I was just 22. It’s gradually progressive, and prevents me from working in any paid capacity in academia or elsewhere, and limits what I can do. The last decade saw me continue to battle a major relapse in my disease, including needing high dose chemotherapy infusions in hospital throughout summer 2012. Fortunately this treatment helped stabilise my condition, although it is still progressive.

Nevertheless I have continued to be active as an academic, publishing new peer reviewed journal papers and book chapters, and presenting conference papers and participating in other ways.

In the early stages post PhD my primary focus was on publishing work from my PhD thesis. Increasingly I have moved onto new research and new topics, and have a number of interesting new research projects underway.

An unexpected more recent change of tack saw me switch from my usual eighteenth century interests to jump back into the seventeenth century. My pre-PhD MPhil (taught PG Masters) dissertation studied a rich set of seventeenth century Scottish local court records, and I felt strongly that these merited publication as well as my later PhD research. In addition I discovered a poem about the court in 1682 – written then too! I have an annotated transcript and accompanying essay about the poem due to be published soon. This might sound straightforward, but the seventeenth century context is far outside my comfort zone as a historian. Yet I have derived much pleasure working in it, and learning the historiographical ropes. Encouragingly I also think there could be more publishable outputs possible from this MPhil dissertation research.

I have also combined my historical interests with indie computer game development, specifically traditional text adventure games, or interactive fiction as they are more commonly known nowadays. Two games have been entered into competitions, one about Border Reivers in 1490s Liddesdale, the other an occult treasure hunt in 1590s Scotland based on a true story in my family history. I plan to write more in future. It’s a creative hobby that gives me much pleasure.

Another area I would like to explore more is digital humanities. I’ve always used large scale computer techniques in my historical research, probably inevitable given my previous background as an academic computer scientist. Yet I would like to do more, for example building online portals to some of the databases and resources I have built in my research, and using spatial analysis and visualisation to further explore Scottish book history and urban history.

One thing that has declined over the last decade is my participation in academic conferences. This has had a strong correlation with my neurological disease progression, and the increasing practical challenges of attending conferences given these circumstances. However I do still occasionally speak at conferences, or attend. I was due to speak at a conference in May, but then Coronavirus happened. Hopefully the event is just postponed, rather than cancelled.

Something else that has declined over the last decade is how frequently I have been able to attend Dundee University history research seminars for the university’s history academic staff and postgraduates in particular. There are various reasons for this, but my progressive disease is definitely a major factor. I was delighted recently when I managed to attend a history seminar, the first in a very long time. Many familiar faces to see and catch up with, as well as new folks to meet. Yet even largely home based I don’t feel completely cut off as an academic historian. Twitter is a particular boon, connecting me with fellow academics and historical researchers with shared interests, all over the world. I also have a good number of lecturer friends I can call on for advice if need be. Ever since my PhD I have had an honorary research fellowship in history at Dundee University, which has also been a huge help, and is very much appreciated, giving me ready access to electronic journals and other resources, so vital to allow me to continue to keep up with research in my academic fields.

I don’t know what the next few years are going to bring. But for now I look ahead with optimism, and hope to continue to build on the good progress I have made as an academic historian in the last ten years.

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Dealing with an invisible and fluctuating neurological illness

I wanted to blog a bit about what my life has been like since 1994, and the struggles I cope with that people can’t see. There’s still very much a perception among the public and medical staff that you can judge someone’s health by looking at them, or in a short interview. This is the core basis of many things, including benefit assessments, medical consultations etc. But for fluctuating largely invisible illnesses it’s hugely flawed.

I fell ill with what would turn out to be cerebral vasculitis in 1994, aged just 22. This is a literally 1 in a million diagnosis (no I’m not making that incidence up!) and it can be very difficult to diagnose. I was misdiagnosed with ME at first, and only diagnosed properly in 1997 after brain scans and then many more tests. My form was initially similar to ME but then changed to be closer to multiple sclerosis, in a somewhat relapsing-remitting form, but also rather progressive. I’m not going to recount the whole medical history, which is summarised online. But it’s a struggle to stay alive, and it’s amazing I’m still here 21 years after that delayed eventual correct diagnosis. Chemotherapy, steroids and immunosuppression drugs (many lifelong) keep me alive, and slow down further brain damage.

What I wanted to focus on in this post is the invisible and fluctuating nature of my illness. Since not long after 1994 I’ve used a stick permanently, and more recently two. And since the late 1990s I’ve had my own manual wheelchair for occasional use. Yes those are visible signs of disability, and people do, thankfully, usually notice them, and take them into account. But other than this I can look very well. Chunky from steroids, but otherwise looking well. If I had a pound for every time someone said “You look well!” I’d be rich. Each time I want to cry – it’s not how I am. But what can you say. I get particularly exasperated when a medic says it.

What someone looking at me can’t see are the hidden symptoms. They can’t see how I struggle to control my bladder, and have to wear incontinence pads permanently, since I was in my early 20s. They can’t see inside my brain, to understand how as a conversation goes on I get more and more brain tired, have more trouble hearing, speaking without slurring, and just thinking full stop. All things that worsen as I’m more tired, that you won’t see, until it gets extremely noticeable, and by then it’s probably far too late for me, and I should have gone back to bed to rest long before then.

You’ll see me for just a short time when I get out, but won’t see how much I’ve had to rest – sleep solidly! – the day before any appointment or meet up, so I’m well enough to manage that outing. And equally how I will be knocked out and sleeping solidly both after I get home and the day after, because of what the effort to get out takes out of me. I make this effort because I want to have fun, and do things, but it always takes a lot out of me. Yes I may be smiling and happy when you see me for a short time, but I’m exhausted before and after, and it’s not easy.

Also I may use a wheelchair one day, and other days not. Or get out of my wheelchair part way through and walk with sticks after. That doesn’t mean that the wheelchair wasn’t needed, and that I’m fine. It just means that it’s done its job helping me to do what I need to do. And yes, I will still crash badly afterwards.

Nor do you see how much I need to sleep. As my disease has gone on over the years I’ve found that I need to sleep more and more. The amount increases during a relapse or flare, and can go as high as 18 hours total a day, every day, day after day, for weeks or even months. As the inflammation in my brain reduces the amount of sleep needed per day usually drops too, but it’s never anywhere remotely near normal. Often it’s as though I’ve been given a horse tranquilliser, and I’m very sedated and confused. I can’t fight it – if I do I risk at best making myself vomit uncontrollably as my body fights back, or at worst more serious brain damage happening, if I push myself too far. I’ve learned the hard way that I need to go along with my body, and that this increased sleeping is my brain’s way of protecting itself, especially during increased periods of disease activity. But it’s still difficult. And other people usually haven’t the remotest clue. They’ll think I have the normal amounts of time that others have per day to do things, whereas in reality I’m snatching odd hours here and there, as I can, sometimes weeks or even months apart. My first history PhD supervisor used to say he marvelled at how productive I would be in such a short time, which I found a really insightful and understanding comment.

One of the most infamous medical interviews I had was with a neurologist, who because I’d completed a PhD was convinced I couldn’t have significant brain problems. But I did that PhD in the most difficult circumstances. Part-time yes, but way more part-time than that sounds. For much of the time, including writing my thesis, I was working on the PhD in one hour chunks, spread throughout the week, for no more than five hours total a week. After each hour, for example writing more of my thesis, I would be so brain tired that it would take me up to a couple of days to recover before I could have another hour’s go. All because of my brain disease. But nope, I looked fine clearly, and this neurologist had no understanding. Luckily I didn’t rely on him for treatment,

I’m tired now, so will wrap this up. But I hope it’s given an insight into what living with an invisible and fluctuating disease can be like. If you have a friend or family member with something like this, please think twice before saying “You are looking well!” It may not be the most supportive way you can help them. And don’t prejudge strangers you encounter, including with Blue Badges.

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Ebooks including Kindle as a way of overcoming disability reading problems

Followers of this blog may know that I completed a history PhD. But perhaps many won’t know that I did this while battling a severely disabling neurological illness. And even less known is how badly this affects my reading. Ironic since I was researching historic reading habits for my PhD.

Reading has been a problem for me since the late 1990s. I struggle with ordinary print, finding it swims constantly, and I can’t read it for long at all. Even managing to read a single page can be too much. So there’s no way I can read for a long time, or any extended book like a novel. The only print I can read now is either diving in to specific sections (very short sections!) of an academic book, or reading graphic novels (comics),

When I was retraining as a historian my postgraduate Masters degree had hefty reading lists for each week’s lecture and round-table discussion. Obviously I couldn’t read all those. So I’d try to see which books were most relevant, and narrow down what was needed. Really brutally, to specific sections, or abstracting drastically. Most of the reading list wasn’t discussed each week anyway, so I coped. And my lecturers, including my PhD supervisors, little knew how badly my reading was affected. Even now I battle to read academic books, and rarely can. Academic journal papers also pose a significant challenge. Note many of these humanities academic books are not available in e-format, especially older ones.

But though I could work around things to a large extent in my academic life I couldn’t avoid the problems the reading difficulties caused for my recreational reading. For much of the late 1990s and 2000s I stopped reading for fun completely. It was devastating, for an eager reader like me. I tried audiobooks, for a while having a very bulky tape player on loan from a national listening library, and receiving bulky tapes in the post. But this didn’t work well, because of my memory problems, which meant that I constantly need to go back to reread sections, to remember plot and/or characters. Easy in print, or ebook; much more impractical in an audiobook, especially a manual tape player.

What turned things around for me was ebooks, firstly on my iPod touch, and then in Kindle format. I adjust the font and spacing to be huge – more like a Ladybird book size, for little children. And then I find I can read, and read, and read. Still in fairly short bursts, and I still contend with major memory problems affecting my reading. But I was reading again, for fun. Woot!

That was several years ago, and my reading enjoyment continues. As an ebook reader for a long time my local library didn’t provide any ebooks, and I couldn’t read their print format books, even large print. More recently they added ebooks, but an extremely limited selection, with little that I wanted to read. Vastly less than the range of books provided in print format to the library’s users.

So I usually have to buy ebooks. Often I’ll pick up bargains, e.g. in Amazon’s special Kindle sales for 99p. Or relatives will buy me ebooks for my birthday or Christmas. Often I pay full price for an ebook, for something I really want. But it is quite an expensive habit, since I can’t borrow free books from the library.

On the plus side many out of copyright ebooks are freely available through Project Gutenberg, and can be downloaded to load onto e-reading devices like Kindles, iPads etc. I’m currently working my way through Charles Dickens, and have also read and reread all the Sherlock Holmes books. But I’m more likely to read new books, even if I must be careful how I buy them.

But I am reading! So it is more than worth it. Each year I set myself a reading challenge in Goodreads, where I record the books I’m reading. Given there can be extended periods (weeks or even months) where I’m too ill to read at all I’m modest in my challenges. But this year, based on past successes, I set myself the goal of finishing 50 books in 2017. So far the running total is 67. For example this October has been full of spooky reads. I’ve just started Ray Bradbury’s The Halloween Tree, which I’ve never read.

I know many people are anti ebooks. That’s their choice. But my story isn’t unique. I’ve heard of other people with similar medical conditions – e.g. multiple sclerosis, ME or stroke survivors – who also struggle with print, but with ebooks can adjust the font and spacing so they can read. I think this aspect of ebooks and reading is little understood and little recognised, but for me it’s been life-changing, and remarkably positive.

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My alumni profile on St Andrews Computer Science website

Before I retrained as a historian I was a computer science undergraduate and postgraduate student at St Andrews. I only left that after developing a MS-like illness, aged just 22. I couldn’t carry on with the full-time PhD. I doubt with the brain damage I could even have completed it part-time.

It was very difficult, leaving that PhD. It took me years to come to terms with it. But I’ve kept in touch with people, and have good friends there. My husband completed his PhD there, a few years after I left, so we have retained strong ties with St Andrews Computer Science, even if it’s been difficult for me.

I was approached a few days ago by one of my St Andrews PhD supervisory team to write a profile for the CS alumni page. I’m guessing a call went out to the staff to try to get more profiles from past students. I didn’t expect to be asked, given the circumstances in which I left. But I think it was a positive thing.

Writing the profile brought back lovely memories, especially of my undergraduate days. It’s now been posted on the website. Click the “read more” link to see more of it, including my favourite undergraduate modules, and other memories.

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Implications of living with a rare disease

Today is Rare Disease Day, where people living with rare diseases are promoting their experiences through social media and other forms of networking. Though this is a bit of a break from my usual academic blogging, I hope that readers will understand why I’m writing this.

I live with a 1 in a million diagnosis, falling ill when I was just 22. The name is cerebral or central nervous system vasculitis, which when it springs from nowhere – as in my case – rather than as a result of another disease has an incidence of about 1 case per million people per year. Yes I’m special! Mmmm. This disease has impacted on my abilities to be an academic, forcing me to leave one full-time science PhD and later study part-time as a historian, to PhD level (completed – yay!). And it means I can’t work in academia in a paid capacity, due to my MS-like symptoms and living with what is a progressive disease. But I try to be as productive as I can. To read more about my medical story see here, and to read more about how I’ve coped as an academic see here.

But in this post I wanted to reflect more on some issues that living with a rare disease causes, rather than something more commonly found like cancer or arthritis. These range from diagnosis, through ongoing treatment and medical research, support from the social care system, and varied degrees of understanding from family, friends and colleagues.

Firstly if you have a rare disease, getting the correct diagnosis – which can be life-saving – can be very difficult. General practitioners tend to assume a more common disease form is taking place. Even at hospital level this idea can persist. I was initially misdiagnosed with ME, which at the time (and to be honest still is the case) had no viable treatment. But my symptoms changed over the following years, looking more and more like multiple sclerosis. And progressing. It was very hard to get the GPs to take me seriously. It was only after 12 hours of unstoppable vomiting for no reason – one of my early symptoms – and a GP having to give me a midnight injection in the derriere that he referred me to hospital, extremely concerned. Even at hospital the consultant assumed my ME diagnosis was right. I had to argue with them – hard given how ill I was – why I thought it was wrong, and why more tests were needed. I was right. I had a very aggressive life-threatening disease. One shocked consultant, me just relieved that a proper diagnosis had been made, and treatment could finally start.

But then there are problems too. if you have a very rare disease it’s unlikely to get much medical research, so new treatments may not be discovered, or may not be assessed to be cost worthy and suitable for your disease. With more common forms of vasculitis – the disease I have – there is more medical research happening, particularly into those forms of the disease that are ANCA-associated. For these forms of vasculitis new treatments are developed, and approved on the NHS. But for much rarer forms like my primary cerebral vasculitis the number of patient cases around the world – and in any country – is so small that it isn’t possible to do traditional medical research trials. So my form remains largely unresearched, and there aren’t the trials and resulting scientific evidence to lead to approval for treatment with new drugs discovered for other forms of vasculitis. For example Rituximab is an extremely expensive life-saving treatment approved for ANCA forms of vasculitis. There is not scientific evidence for Rituximab in the rarer non-ANCA forms like mine, and as a result it is rarely approved by health authorities in the UK.

With such a rare diagnosis support at general practitioner level and nurse level can be a problem. They’ve probably rarely encountered any vasculitis cases, which is rare enough, let alone my specific form. I have an excellent GP who has treated me since 2004 (I fell ill in 1994), but it can be difficult to get appointments with him. Because of him being away from the surgery on one day combined with the health centre appointment system stopping named appointments on certain days it would be vastly easier for me to get an appointment with any doctor, particularly a locum, but unless they’re “my” doctor they wouldn’t know what to do with my case. I’m on an incredible cocktail of drugs as well as having something rare and exotic wrong with me, and continuity of care is important. Even with nurses who administer my monthly (and for many years weekly) blood tests things have been a little difficult, with nurses not understanding why certain tests are needed, and not initially taking my word for it. But we got there in the end. Incredibly even at hospital level there are problems if you have to see another consultant unfamiliar with a rare disease and case. My consultant since 1996 recently retired, and I was very concerned that I would be put in a general clinic where I would have to tell my medical story every time, and even after that the medic on the day wouldn’t be confident what to do. Fortunately I was passed to another consultant who was my “backup” for years. He’s young, and hopefully not retiring or moving anytime soon!

It might be expected that a medical professional should know about a rare disease, though they rarely do. But it can be harder for non-medics. This causes problems for example for people applying for benefits through the benefits system. But even with family, friends and colleagues there can be misunderstandings. My disease is largely invisible. I only use a wheelchair rarely, though I have at least one stick (and sometimes two) permanently. People often only see me for the short periods I can go outside to an event, and don’t realise how much it takes out of me, and how much I need to rest before and after events. Also because I manage to do things people can underestimate how badly I am affected. I’m particularly minded of the notorious experience of dealing with a neurologist, who because I had completed a PhD couldn’t grasp that I could have cognitive problems. I completed that PhD towards the end in 1 hour chunks, spread throughout the week, up to 5 hours total time a week if I could manage it. After each hour I would be very wobbly, couldn’t control my limbs, just from the brain concentration I’d been doing, and it might be a couple of days before I could do anything PhD-y again. Yet he thought I was fine, on the basis of a short consultation, and because I had that PhD.

Fortunately both my history PhD supervisors were hugely supportive. They quickly grasped that they didn’t need to understand the medical side of things, they just had to know how I was affected, and let me take control of my studies. I’ve also had wonderful support from the department since completing the PhD, giving me an ongoing honorary research fellowship. And conference organisers are typically very helpful if I have to use my wheelchair, letting my husband accompany me at no registration cost, to assist me.

I don’t know the numbers, but there are probably a lot more people living with rare diseases out there than people think. I’d like to think that the situation will improve for them. But it’s going to take a bit of a sea-change in attitudes, both among the general public, and among the medical profession.

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