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Posts Tagged ‘neurological’

I’ve blogged before about the considerable difficulties I have attending academic conferences now, due to a neurological illness.

I’ve persevered for years with access problems and excessive fatigue meaning that I can only attend often a day at most, or have to do a day at the conference, then a day of solid rest, then another day back at the conference, and so on. But even though my disease is doing better at the moment, I’m now seriously considering whether it will be practical for me to attend academic conferences from now on. This is despite the pleasure that I can get from attending a conference, and the academic stimulation, and benefits of networking etc.

To be fair a lot of conference organisers have been enormously helpful in helping me attend. In particular many have allowed my husband to attend free as my carer, to help me get around, with or without my wheelchair, fetch food etc. But equally I’ve had huge problems. A particularly notorious example was at the SHARP 2016 book history conference at the Bibliotheque Nationale in Paris. Despite assurances in advance, and my confirming repeatedly to organisers which talks I wanted to go to in my wheelchair, the conference organisers scheduled one of my desired panels up a flight of stairs with no lift. A simple human error, yes, but one that caused me considerable difficulties on my sole day at this conference.

Attending international conferences like the Paris one puts particular strains on me. I need to sleep for much of my time there, on alternate days at the very least, so I’m limited in how much I can attend any event. My husband is needed there to help me attend. I don’t have financial support from a university, so we foot the double travel costs ourselves as well as registration fees (my husband usually gets in for free, but I often have to pay a full multi-day conference registration fee, even if only attending on a single day). More worryingly many academic conferences are in university buildings which vary markedly in their accessibility, and, as the Paris example shows, organiser assurances about accessibility aren’t always reliable. And so often it’s just simply not worth the hassle to me.

I don’t want to rule out attending conferences completely, but I think it’s going to be increasingly unlikely that I’ll attend international ones in particular. I had hoped, for example, to attend the SHARP book history conference in Amsterdam in 2020, but for various reasons, largely out of my control, I’m doubtful of doing that now.

But I do still intend to travel overseas. I have travel plans for later this year, but the focus increasingly will be on fun and enjoyment, under my control as much as possible, rather than trying to do something that’s increasingly impractical for me, difficult to manage, and reaps insufficient rewards.

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Wow the Open University is 50 years old today!

This snuck up on me! Fifty years ago, today, the Open University received its Royal Charter. I’m a huge fan, and thought I’d reflect a little on the extra chances the OU gave me. The OU is a much venerated UK university, that set out from the start to support part-time distance learning at home, giving people a chance who might otherwise be unable to study at university level.

The OU gave me a second chance after I dropped out of my science PhD, after falling seriously ill with a MS-like illness at just 22. Once I was finally diagnosed properly and started life saving chemotherapy treatment it made me nauseous and vomit for up to 8 hours every day, every single day, for years. I had to try something to take my mind off it, so started studying part-time with the Open University. The OU support staff thought I was too disabled to study with them by this time, but I tried. When I went to St Andrews University in 1990 I had wanted to study two subjects: Scottish history and computer science. But I could only do one, and was qualified for the latter, so stuck with that. But history – and especially Scottish history – was unfinished business for me. Now was my chance!

My first course in 1998 saw me jump straight in to second year history, and a course on Culture and Belief in Europe 1450-1600. Renaissance history basically. I loved it! It was phenomenally hard. I’d skipped the foundation year that teaches you to write academic essays, and analyse historical sources, and do art history and literature. So I didn’t make things easy for myself. Didn’t get the best course result, because of these circumstances. But oh it was brilliant. It also made me fall in love with Venice, and I went there later that year for the first time.

The next year I studied a course on family and community history. Yes that was good for me, a lifelong genealogist! I was able to use my family history stories in the essays for it. So, for example, I wrote an essay looking at my 3xg-granddad John Usher Somner running a rather posh boarding house in West End Edinburgh in 1871. At the other extreme I analysed the poor relief records for a 4xg-granddad John Hall, in 1860s Hawick, From my husband’s family I did a mini project looking at the extent of interbreeding (yes there was a lot!) in two Suffolk parishes where his ancestors lived. And for my final big end of year project I analysed Coldingham baptismal witnesses.

By this point I was well on my way to a history degree, and with credit transfer from my Computer Science BSc(Hons) I had extra points to shorten the amount I needed to study. But I took a big swerve in my final year, veering towards classical studies, with two courses. The first looked at the Roman Empire, particularly regarding power and identity. That was fascinating. Archaeology, mixed with written sources, visual images of gravestones and stuff, from all over the Roman Empire. I loved that. At the same time I studied a course on Homer’s Iliad and Odyssey, which combined the literary works with the archaeology of Troy. Which I had a family connection with. That 3xg-granddad John Usher Somner was a nephew by marriage of Charles Maclaren, first editor of The Scotsman newspaper, who first pinpointed Hisarlik as the likely location of Troy.

Throughout my OU studies I studied from home, using course materials – published books, course books written by the course team, handouts, etc. – sent to me in regular chunky postal packages. This was supplemented by face to face tutorials, but for much of the 3 years I was too ill to attend those, even the ones nearby in Dundee (I lived in Cupar at this time). I was also too deaf at this time from my neurological disease, so couldn’t chat to a tutor by phone. So I was extremely isolated. But the course materials were almost all superb. The course books, written by the course teams, particularly wowed me. These were written collaboratively, to a very high standard. And were much better quality, in overall terms, than many science lectures I’d attended as an undergraduate student at St Andrews. In addition I had contact with other students through the FirstClass online computer networking system, which made me feel less isolated, and helped build up a community. 20-odd years on, long after the demise of FirstClass, I’m still in touch with OU friends I made then. The OU supported disabled students brilliantly, long before the Disabled Students Allowance started, and long before many other universities made any kind of provision.

I studied with the OU between 1998 and 2000, and by the end of my classical studies courses I had enough credits to earn a BA(Hons), joint history and classical studies. This then provided the foundation on which I studied further at Dundee, doing a taught MPhil and a PhD, both part-time, both in history (mainly Scottish). My OU degree was very well regarded by the lecturers at Dundee, and they particularly valued how it showed independent learning.

In more recent years funding changes by the UK government have slashed revenue to the Open University, and reduced the financial support for part-timers to extremely low levels. This is especially the case in England, where it is very unaffordable now to study with the OU, especially if, like I was, you already have a first degree. But I was retraining, in a totally different subject area, so needed a second chance. And many people are keen to study lifelong. The OU is at great risk now, but I will always be grateful to it for the support it gave me. And it’s an institution that should be very proud.

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I’ve blogged here before about my reading problems, from the neurological illness (cerebral vasculitis, very MS-like) I’ve lived with since 1994. From quite early on in my illness I was struggling more and more with print. Even large print books were a struggle. Luckily ebooks helped, when they appeared, but I still struggled with academic books, including throughout my history PhD. Which, ironically, was on historic reading habits.

Well I’m pleased to report that there are signs that my reading of print books may be recovering a little bit, or at least improving. In the last few months I’ve managed to read two non-fiction books (one academic, the other pretty in-depth), in print form. Very slowly, no more than a chapter at a time, and often less than that. And often quite extended periods before I can read any more. But even this is something I couldn’t possibly have tackled in many previous years.

There’s still no way I could tackle reading a long novel or similar in print, including in large print format. But if I can manage to catch up on some of my backlog of academic non-fiction books, albeit slowly, that would be brilliant. It would also help me move some of my planned academic history research projects forward.

My cerebral vasculitis is in a much more stable state at the moment, and the improved reading would fit along with that. But it couldn’t be assumed to happen, especially after so long. It may be that my brain is rewiring a little bit. There are probably limits to how much better it would get, given everything. Anyway it’s all very encouraging.

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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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Was just commenting on a post in the Vasculitis UK Facebook group today, and reminded of the devastating daily nausea I had for years from Azathioprine. I started taking this drug in 1998 to control my life threatening neurological auto immune disease cerebral vasculitis. Basically the drug controlled the inflammation in the blood vessels in my brain, and kept me alive. Azathioprine is a very old chemotherapy drug, though not just used for cancer, but also auto immune diseases like mine. It’s quite mild, but it can cause the horrible side effects. I would feel sick within 90 minutes of taking the pills, and it lasted for up to 8 hours a day. Every day, for most of a decade. That’s what I lived with from 1998 onwards. Every single day. For some people the sickness goes away. Not me. I stuck with it because I suspected – rightly as it turned out – that all the cytotoxic drugs (including the main alternative drugs I could be switched to, and ended up trying later anyway) would make me hurl. Eventually, after another drug had been added to the mix in 2006, and I said I just can’t cope with this sickness from both, the medics put me on twice daily anti nausea drugs for life. That transformed my life. I wish I’d been on them sooner. Years later I had high dose chemotherapy infusions in hospital, which made me even sicker. But they only lasted a few months. Azathioprine went on for years. So yup, chemo and auto immune disease can be a stinker. And not just the obvious high dose infusions.

P.S. A point that I should add is that auto immune chemo patients don’t get the same support that cancer chemo patients do. We’re not given the same anti nausea drugs. Also no similar arrangements re free hospital parking for infusion days. But it can be just as tough. And a treatment that can go on for vastly longer.

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As we near the end of 2017 I thought I’d reflect on the books I’ve been reading over the last year. Note this is the books I’ve been reading for fun, usually on my Kindle. I have a to-read pile for academic books of quite scary proportions – well several piles! Academic books are trickier for me to read, due to my brain damage, because I usually can’t adjust the font etc. I also tend not to get on well with PDF-based ebooks. But I read ebooks avidly for fun, and got through a fair number this year. 89 finished so far, and there may be more yet.

My list of books completed in 2017 is online at Goodreads. I set myself, just for fun, the goal of completing 50 books this year, and have surpassed it. Particularly good again given my MS-like illness, which wipes me out for much of the time, and makes reading extremely difficult.

Looking through the list of books completed in 2017 a number of trends jump out. For example I really like fantasy and horror books. I’m not a big scifi fan, preferring fantasy, sword and sorcery, magic etc. So, for example, I’ve been continuing my read through (and reread in many cases) of all the 41 Terry Pratchett Discworld novels. I completed six more Discworld books this year, numbers 32-37 in the sequence, interspersing them with other reading material. I started reading book #38 last night.

Another series that I’ve been reading throughout the year, and will carry on doing so into 2018, is Neil Gaiman’s Sandman series of comics / graphic novels. I’ve read these before, and love them, and am rereading them on my iPad in Comixology’s guided panel view. There are 10 collected graphic novel volumes in the main Sandman series, and I read numbers 1-6 this year, and am part way through number 7. Again enjoying immensely.

Other comics that I read this year included those shortlisted for the Hugo scifi awards. As a member of the 2017 Worldcon (actually attending it, in Helsinki) I got a voter’s packet of many of the Hugo shortlisted works. And that included the comics up for the award. So I read loads of these. Many of the works, such as Saga, were parts of ongoing series, but I enjoyed them nevertheless, and have thus found more comics that I want to read in future. I also read most of the Hugo-shortlisted novelettes and novellas.

The Worldcon in Helsinki was held in August 2017, and not long after that I read several horror books in the run-up to Halloween. The first was Graeme Macrae Burnet’s Booker-shortlisted His Bloody Project, more crime than horror, but could easily fit into the latter genre too. I followed this with an annual favourite reread: Roger Zelazny’s A Night in the Lonesome October. I recommend this book to any fans of horror, weird fiction etc. Especially in the days before Halloween. It is rather designed to be read daily throughout October, though I always gobble it up more quickly. Other horror works read in October include Robin Jarvis’s The Whitby Witches, and Ray Bradbury’s The Halloween Tree. October was definitely a good month of reading for me.

Although as noted above I’m not a big fan of scifi I did read several Doctor Who books throughout the year. For me Doctor Who is less a scifi series than a storytelling engine with time travelling aspects. I also read famed scifi writer Michael Moorcock’s The Jewel in the Skull, though this is very much a fantasy novel of his, rather than the scifi that some may associate him more with.

Something new for me this year was reading a number of play scripts. I haven’t done this since I was at school, wading through Shakespeare etc. Thanks to attending a nationwide cinema screening of a live performance of Rosencrantz and Guildenstern are Dead I read the script of this play afterwards. To my surprise, finding play scripts vastly easier to read than most print books – lots of space on the page, not too much crammed text to wade through – this was followed by Liz Lochhead’s Mary Queen of Scots got her head chopped off, which I saw on stage in St Andrews in the 1990s, and Rona Munro’s trilogy The James Plays about Scottish Stewart kings James I, II and III. I have my eye on David Greig’s Dunsinane play next – definitely getting a theme here for historical Scottish ones!

Quite a few of the books I read this year were bought for me as birthday or Christmas presents, usually in ebook form for my Kindle, where I read with a gigantic font and huge line spacing – more in appearance like a Ladybird book for a 5 year old child. Such present titles read included The Moon Stallion, which I saw on the television long, long ago, and Frost Hollow Hall, another Young Adult book with a historical bent and several supernatural elements to it.

I’d like to mention the books that were my favourites this year, all of which I rated as 5-star in Goodreads. In reading order they are as follows:

  • A Hat Full of Sky by Terry Pratchett
  • The Crystal Cave by Mary Stewart, the first in her Merlin trilogy
  • The Weirdstone of Brisingamen by Alan Garner
  • The Swish of the Curtain by Pamela Brown
  • Dandelion Wine by Ray Bradbury, a love-letter to small town America and childhood in the 1920s
  • Mary Queen of Scots got her head chopped off by Liz Lochhead
  • Ms Marvel vol 5 “Super Famous” graphic novel
  • Saga vol 6 graphic novel
  • Comet in Moominland by Tove Jansson – read in the run-up to our trip to Finland
  • Peril at End House by Agatha Christie – one of my favourite Hercule Poirot stories
  • Rotherweird by Andrew Caldecott
  • Tommy v Cancer: One man’s battle against the Big C by Tommy Donbavand
  • The Moon Stallion by Brian Hayles
  • The James Plays by Rona Munro
  • The Fellowship of the Ring (Lord of the Rings part 1) by JRR Tolkien
  • A Night in the Lonesome October by Roger Zelazny
  • The Lie Tree by Frances Hardinge
  • Doctor Who Yearbook 1993
  • The Express Diaries by Nick Marsh
  • Frost Hollow Hall by Emma Carroll

To be fair many of these top-rated titles were rereads for me, including my absolute favourite Lord of the Rings. But I also found some new favourites to reread in the future, including the already-mentioned The Moon Stallion and Frost Hollow Hall, and Ray Bradbury’s Dandelion Wine.

So that’s my look back at a year of reading. It’s been fun! I look forward to reading more in 2018.

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20 years ago I was undergoing a battery of tests to try to establish which neurological disease I had. I’d fallen ill 3 years earlier, aged just 22, and was initially misdiagnosed with ME. My symptoms changed over the next few years, and looked increasingly like MS. A MRI brain scan showed multiple lesions, suggesting some form of inflammatory disease process. More tests were needed to find out what.

I had those tests on November 5th 1997, 20 years ago this weekend coming up. Scans of organs of the body, visual evoked potential test, a lumbar puncture, and many blood tests. I remember driving home to the sound and smell of fireworks. The new diagnosis came a few weeks later: cerebral vasculitis, inflammation of blood vessels of the brain, cutting off the oxygen, causing brain damage, and symptoms similar to MS.

For a long time the future looked bleak, especially after a relapse in 2004. Vasculitis is an incurable disease, but with luck – and appropriate treatment – it can go into remission. Treatment is often lifelong steroids and immunosuppression, to reduce the inflammation in the blood vessels. I’ve had a very tough time over the years, though have been more stable since I demanded high dose chemotherapy infusions in hospital throughout summer 2012. Those turned things around.

So I’m now managing on a lower cocktail of daily immunosuppression drugs. But I’m still getting worse. I recently renewed my Blue Badge and my mobility was significantly worse than when I’d last renewed 3 years ago. And I’m very disabled in other ways, including sleeping up to 18 hours a day due to the brain inflammation. I can’t work with this, and am very lucky to be alive.

But I’m happy! And still here. So thankful for that. But it’s frustrating having this condition, that I will never be rid of. It’s also difficult for people to understand what’s wrong. Even though I use mobility aids – usually 2 sticks, if not my wheelchair – most of my problems are inside, invisible.

For more on my vasculitis story see my page on the Vasculitis UK charity website.

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