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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Experiences of researching building history of 166 Nethergate, Dundee

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, 48 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

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Living with anxiety

For #WorldMentalHealthDay here’s a link to my old blog post about living with anxiety and still being productive as an academic:

http://blog.depressedacademics.org/2015/04/hidden-mental-health-issues-my-battle.html

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