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Posts Tagged ‘auto immune’

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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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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