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Posts Tagged ‘disability’

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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Earlier this year I researched the history of this building, the first time I’d done that type of historical research. And I thought it might be useful to reflect on my experiences of doing it.

I did have some advantages going in. My postgraduate taught Masters degree was partly in urban history, taught by architectural historian Professor Charles McKean. So I picked up some tips. As well I had my academic historical research experience, and 35+ years as an amateur genealogist. So I was well used to researching people in the past, and the main sources that can help. But this was still a new challenge.

I was prompted to do it when I spotted that 2018 was the 200 year anniversary of the building where my husband works, now the HQ for the space technology company STAR-Dundee. They are a Dundee University spinoff company, and the building used to be university owned. Earlier its history was much less clear, though it was believed to have been a merchant’s house originally, and built for a man called James Gray.

So not too much to go on, when I wackily emailed STAR-Dundee boss Stuart in early April and offered to trace the history of the building and is inhabitants over two centuries. I wasn’t optimistic about what I’d find.

One of the first things I did was to check the architectural records held by Historic Environment Scotland. The Canmore database listing for the building mentions it was called Grange House. Well, I found that was wrong, probably from someone – quite possibly even my PhD supervisor Charles! – misreading the original architect plans, that, miraculously, the HES search room holds, as part of a volume of plans by the building’s architect David Neave. That sort of survival just doesn’t usually happen for buildings of this age. I was able to order digital copies of the original plans, and get permission from HES to reproduce them in my finished report. The plans show how the building, which went by the name Graybank for much of its history, was laid out in 1818 as a house, including the use of each room. The 1818 plans also included front and rear elevations of the house, which gave a lovely insight into what the building originally looked like – remarkably similar to now.

Alongside that I was able to quickly check records from core sources. Most were readily available online. For example the National Library of Scotland has a marvellous digitised collection of local directories, showing the occupants over time. Likewise ScotlandsPeople.gov.uk has all the 19th century census returns, digitised valuation rolls, wills and inventories, and much else besides. As a disabled academic, being able to access so much material online, conveniently and easily, was a real benefit, and speeded up the building research process enormously. For example from ScotlandsPeople.gov.uk I was able to download digital copies of the detailed lengthy wills and after-death inventories of many of the house’s owners, allowing me to transcribe them conveniently at home, and add much useful information to the finished report. This included the original owner, James Gray, whose inventory recorded the many ships he was a part owner of. We now have a confirmed vision of him watching for some of his ships from the vantage point of his new riverside house!

Perhaps most surprisingly – although maybe I shouldn’t have been too surprised – was the wealth of material found in old newspapers, searched by keyword search on the British Newspaper Archive website. These provided much rich detail about the house and its occupants. There were a number of sale or rental advertisements, describing it at different points. But there were also lots of marvellous obituaries for the various members of the family, and also mentions of family celebrations. One particular delight concerned a resident’s time before he moved into 166 Nethergate, revealing that he’d given a talk at Dundee University on the history of the solar system. A marvellous find given that the building is now the home of a space company!

We also managed to trace the family grave of the original owner in Dundee’s Howff cemetery, and my husband photographed it, to go into the report. A nearby Flowerdew family gravestone can’t be read any more, but we were able to find a record of its original inscription. Overall we were able to manage to find lots about the families who lived in the building for its first 130 years – Gray, Flowerdew, Lowson, Buist, Moodie plus some others in between – even in some cases tracing family photos and home movies from the 1930s.

The university connection was valuable from a research point of view. As a university property, a wealth of paperwork was preserved relating to the house from the late 1940s through to its sale to STAR-Dundee in 2011. This included more architectural plans, but also original surveyor reports, correspondence relating to the sale and use of the building, and even a duplicate old key lurking in the paper files! All of this information filled out the picture immensely.

In the end, in just about 10 weeks, I was able to compile a detailed report about the building and history, 49 pages long, in A4 format. We arranged for this to be printed and bound, and copies were given to STAR-Dundee, and posters about the building’s history put up for employees to look at. Copies of the printed report were deposited with Historic Environment Scotland’s archive in Edinburgh, and Dundee University Archives, so people can still access the research in 50, 100 or more years time.

Would I research a building’s history again? Yes, probably, though almost certainly with more modest expectations of what I might be able to uncover for another case. I think this first one rather spoilt me in terms of being so rich in source material, and, yes, those original plans. Enormous fun anyway.

Photo of 166 Nethergate

Photo of 166 Nethergate

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My husband and I visit the Edinburgh Book Festival every other year or so, and were back again last week. We’d booked to go and see a talk by Brian May and photographic historian Roger Taylor. But I was also keen to see the bookshops again, which I always find excellent.

This is the first year that I’ve found the crowds a particular problem. I have to use my wheelchair when I’m there, with my husband pushing, and this year getting past other visitors, who’d often stop to chat in the walkways, was a significant problem. I don’t know if there were higher numbers of people attending this year, or what, but it seemed more of an issue than usual. Note we were there on Wednesday 15th August, in the late afternoon and early evening.

I was also struck by how difficult it can be to get the wheelchair into the tents, bookshops, talk venues etc. There’s always quite a slope to go up, and a ridge to get past or bump over. I could never wheel myself in. Even my husband, who’s been pushing my wheelchair for years, struggled, again not helped by people milling around.

On the plus the bookshops were a delight. I always find things there that are real gems for me, that I wouldn’t know of otherwise. My particular highlights this year included a book of 100 Gaelic WW1 poems, most of them written during or shortly after the war, with dual language Gaelic and English translations facing each other in the book. My other main highlight was finding a book of essays by Philip Pullman about storytelling in its many forms. I was reluctant to buy such a chunky book – I have too many books already, and wondered where I’d shelve it! But it drew me back, and I was very pleased to take it away and delighted when I started reading it. Something else I’d have bought before had I known it existed.

Books bought include Philip Pullman essays, George Washington Wilson stereoscopic history, Gaelic WW1 poems and compact dictionary, and a free signed bookplate to go in the Wilson book

Book haul from Edinburgh Book Festival

The talk by Brian May and Roger Taylor was fantastic. They were speaking about Scottish Victorian stereoscopic photographer George Washington Wilson, and launching Roger’s book about him. The audience were all given 3D glasses to wear, which worked from a vast range of seating positions, and enabled us to enjoy the original stereoscopic photos. Quite magical, and enormous fun. Sadly Brian and Roger couldn’t do a signing afterwards, having to dash off to a BBC interview, but we were all offered signed bookplates to go in the book.

Audience of scary looking people all wearing 3D glasses and looking intently at the stage

Audience at Brian May and Roger Taylor talk (photo by Nicole Ettinger and from Brian May on Instagram)

So a fun trip, but some disability niggles. We’ll be back in future, but definitely with my wheelchair, albeit anticipating problems.

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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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