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Posts Tagged ‘neurology’

Another book I’m reading at the moment is The Man Who Mistook His Wife For A Hat. This is a fascinating account of tales of neurology.

Last night I was reading the tale of a woman who suddenly lost all feeling in her body, losing “proprioception”, so she could only control eg her arms, legs or even posture by looking visually and learning to focus really hard and without all the usual instinctive cues to help. This was devastating, but I was also struck by the initial description of her losing sensation in her limbs, and them going out of control, flailing around widely.

I have a 1 in a million progressive neurological disease, primary cerebral vasculitis, in a form very similar to multiple sclerosis. Feeling my limbs go out of control is a common sensation, going fuzzy, often like bubble wrap, or just very wooden and incredibly stiff. It is also more of a problem now, as my disease progresses more, and I rely even more on my two sticks and wheelchair. The account in the book struck so many similarities for me. I just wish I understood it all more.

I wish I could get more information about this from a neurologist. But I had a bad experience the time I did see a neurologist. I also know many other cerebral vasculitis patients who have had poor care from them, with neurologists often having a tendency to under treat this condition, even if they recognise the disease process. This can even in worst cases lead to death. I also know of multiple other vasculitis patients who have had a bad experience with neurologists at my local hospital. Rheumatologists are often a better bet for patients.

But yes, a fascinating book. And a recommended read.

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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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