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Archive for the ‘disability’ Category

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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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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Inspired by a very thorough piece in the Guardian newspaper today by Kate Sang I wanted to reflect a bit on my own problems attending academic conferences.

Decades ago I was a young and healthy academic, about to start a computer science PhD. I could attend conferences in their full form: going to all sessions, all days, including meals and socialising.

Shortly after that I fell ill, at just age 22, with a neurological illness very similar to multiple sclerosis. It took some years for me to be diagnosed with cerebral vasculitis, but by then I’d had to drop out of that science PhD. Fortunately I retrained part-time as a historian, picking up three more degrees, including PhD. My disease is incurable, progressive in my case, and is treated lifelong with chemotherapy drugs and steroids to reduce brain inflammation and slow damage.

I can’t work in a paid form due to my illness. It is severely disabling. I sleep for much of the time, sometimes up to 18 hours a day, every day, due to the brain damage and inflammation. And even when awake I am often very confused and can only work for short periods. Near the end of my history PhD I could only work for five hours total a week, in one hour chunks maximum, spread over many days. But I finished the PhD. And I am now active as an academic. I publish academic journal papers, undertake new research projects, and speak at conferences and attend as an audience member. I have an honorary research fellowship from my university, though costs of attending events etc. are paid by myself.

Whereas 25 years ago I could attend a conference in its entirety, now I have to pick at most one or two days, with a day of rest in between. I will also usually have to be modest in my expectations re the number of panels to attend.

Firstly there are the practical issues of getting to the conference. I’m typically travelling with a wheelchair, which usually makes connections by train etc. difficult. Normally if I am flying to a venue it is far easier to get a taxi – albeit costly – from the airport to the hotel. But this only works if it’s within reasonable and affordable travelling distance. A few years ago I was invited to speak at a book history conference in Germany, which would have been very good for my research interests and academic networking. But the venue was far away from the airport I’d be using, and a taxi trip would be quite impractical in journey time and cost terms. Nor could I rely on being able to access trains. So reluctantly I declined the invitation. Fortunately I was asked years later if I would like to contribute a piece to the conference’s collection of essays. I submitted my piece, and the book is due to be published in a month.

Even on the spot physical accessibility is a major concern. I normally now use two sticks, but when at a lengthy academic event I need to use my manual wheelchair – with husband along to help push – to manage to last the day. And getting into and around academic venues can be highly problematic.

One thing I should praise is I’ve found conference organisers usually very helpful in helping my husband attend as my carer. He shouldn’t have to pay, since he is just there to push me around and help me navigate obstacles like doors etc. He is also an academic, but in a very different field from me. So he’s not there to listen to the talks. Most conferences allow him to attend for free. That is enormously helpful, and not something I expected. We still have double travelling costs, but not paying double conference fees does ease the cost for us to a certain extent.

Though against that positive experience very few academic conferences offer daily registration fees. At least in my field – humanities – you typically have to pay for the full conference or nothing. And with me often only attending half or even a third of the conference this makes them particularly costly for the time and benefit that I’m going to get in return from the event. Sometimes I do get a reduced attendance fee though. I am particularly grateful to a recent conference organiser, who given how little I was going to be there, let me attend for free. And my husband as well of course. Thank you Drew!

Once there, if a venue has stairs to reach talks I cannot possibly attend. Sometimes organisers move rooms, which I am very grateful for when it happens. But it’s not just about the room where the talks take place, but also about getting into a toilet, and getting to meals. I have severe bladder incontinence from my brain damage, which in particular causes huge problems with urgency and frequency. I need to go to the toilet a *lot*. Having a wheelchair toilet beside the room is good, but if I have to go constantly during the talks – as has happened – it can be very awkward.

One conference that I regularly attend relocated to a ground floor room, with a toilet beside it, which is good. But the meals including lunch were elsewhere in the building, and I would not be able to get there, without major difficulty. It was far easier for me to stay trapped in the room during the lengthy lunch break, while my husband fetched food for me. This cut down the vital networking with fellow academics I could do, though thankfully some historian contacts specifically sought me out at these times, and had lengthy chats with me in the room on my own. Likewise the book stands of academic books to buy at this conference were upstairs. No way could I get there. So again husband was dispatched, with iPad, to take photos for me to browse, and also to bring any specific titles of interest down to me to look at. In this instance the Brill publishing rep actually came downstairs to take the order from me directly. He was keen to help, but it was still frustrating for me not to be able to browse through all the books in person.

Sometimes I attend conferences with multiple streams of talks on at once, in many rooms, even a dozen and more in one case. For these conferences I will always try to let the organisers know in advance which specific panels I want to attend, to make sure I can reach them ok on the day, and rooms can be swapped in advance if need be. But that only works if the messages are passed on correctly at the other end. At the SHARP 2016 book history conference in Paris, at the Bibliotheque Nationale, I’d checked all the talks in advance, and was assured by the organisers that I would be able to reach them. When I got there on the day I found a panel I very much wanted to go to was up many stairs, in a building without a lift …

But perhaps the worst aspect for conferences for me as a disabled academic is how intensive they are, and how crammed the days are. Often they start at 9am or even 8am, and continue until 6pm or 7pm, with a packed set of talks running throughout those periods. Very tiring in brain concentration terms, and much stamina needed to get through. I understand organisers are trying to fit as much in as possible for attendees. But it is exhausting, even for fit and healthy academics, who can find it wearing. For me it’s impossible to attend even a full day of this. So sometimes I’ll have to choose morning or afternoon, or if I am lucky afternoon and evening. Or I need to try to factor in some sort of rest time, which is difficult in a venue that I don’t know well, crammed with conference goers. I remember at an Ada Lovelace event in Oxford a few years ago that I went back into the main lecture theatre – then deserted – during lunch, to have a bit of a rest, and quiet time to myself, while everyone else socialised out in the lunch area. That quiet time refreshed me enough mentally to allow me to stay for some more talks in the afternoon.

I know that it’s unusual for someone to be as bad as me health-wise and still want to attend academic conferences. But the problems that I have described aren’t unique to me, and some of them – especially issues of fatigue and mobility issues – will be shared by other academics. Not all of these academics will be so obviously disabled. I remember that when one conference I mentioned above was moved to a ground floor venue this turned out to benefit quite a few other attendees, who would not have said anything before. So more accessible venues can benefit a wider academic population.

In practical terms I’m not sure how much longer I can keep attending academic conferences. And if I do it will have to always be done in a modest way, within my limitations. With travel costs, and logistical challenges, there is a trade off between costs and benefit. I will have to continue to decide if it is worth it for me. But for now it is. I just hope not to run into too many practical challenges in future conferences …

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I’ve been spending much time in the last week in the 17th century, transcribing a lengthy poem about a corrupt court judge at Melrose in the 1680s. Doing that reminded me of the talk I gave in September 2013, at the conference of the Economic and Social History Society of Scotland, held in Inverness. I thought it would be nice if I put the PowerPoint slides from that online, so have done that – link here. It was a 20-minute talk, as is usual for academic conferences, so I was limited in how much I could say. But I covered a lot in the time allowed.

My talk was titled “Glimpses into a time of turmoil: examining the regality court records of Melrose, Roxburghshire, 1657-1706”, and was based on the dissertation for my taught MPhil degree at Dundee. I studied the voluminous local court records for Melrose regality, and had a fantastic time. I have ancestral connections in Melrose, going back to this period, and lived there myself for part of my childhood. And as a disabled student it was a perfect project: the records are largely transcribed already, so I could work on them at home, as able to.

In the process of the research I built up a gigantic database of court cases, pursuers and defenders. The index of people’s names recorded is online already, as part of my Melrose one-place study. There were probably only about 2500 people living within the court’s jurisdiction at this time, making the vast numbers of people recorded as using the court quite astonishing.

The slides don’t record everything I said in the Inverness talk though. For example there’s a detailed slide of the many debts murder accused John Halliwall weaver in Gattonside left in 1673 after escaping prison before his trial. I explained more about Halliwall’s story verbally on the day, not on the slides. He escaped on horseback, after a court officer let him out of jail to help him sell ale!

I’ve also spoken about the 17th century court records to the local historical society in Melrose, many years ago, in a well attended talk in the town.

There are so many other stories I want to share about the Melrose community from these records. For example a g… uncle of mine was judge of the court from 1657 to 1665. Well he was, until he was charged with “striking and hurteing of Robert Mott, servitor to John Bowar, portioner of Eildoune”. His own court fined him £10, and he lost his job. But that, and more, is for another day!

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I want to post about a consequence of the Brexit result that many people won’t have thought of: the impact on treatment and support for rare diseases. Since 1994, since the age of 22, I have lived with cerebral vasculitis, a 1 in a million diagnosis, which causes day-to-day symptoms similar to multiple sclerosis, but with the added bonus that it could kill me in a flash. Other forms of vasculitis are less rare, but all are rare. Vasculitis = inflammation in the blood vessels. In my case in my brain. Vasculitis is very under-supported by health services worldwide, causing huge difficulties and delays in diagnosis and treatment, which often leads to death. In the UK cuts to funding have impacted on cross-border referrals for vasculitis patients in Wales, seeking to go to centres of excellence in England, to get diagnosis and/or better treatment and support. And likewise for Scottish patients. Equally many patients in England have a considerable financial outlay, for life, for prescriptions of steroids and chemotherapy drugs that keep them alive. For life. No they don’t get these for free. Charities like Vasculitis UK are working to improve things, but it is a very hard job. Much of their funding and research comes from Europe, both in terms of money, but also working with colleagues elsewhere, to uncover new treatments, and improve support for patients. It is very unclear how this is going to be affected. My friends who are actively involved in Vasculitis UK are very worried. Before any Brexit-er tells me it will be ok, there will be a way, that it isn’t directly EU, or that the UK will replace the funding: no, we don’t know what will happen. And for such a rare diagnosis it is hard enough to get support as it is. The relationship with Europe for vasculitis research and funding is important. And right now the people who are working to save lives are very very scared. This makes me sad 😦 And scared myself.

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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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