The Big Bad Wolf

Can you imagine you have a huge, angry wolf that follows you around day and night? It never leaves you to sleep well, eat normally or socialise. When you try to act the way you used to with friends and family it makes you tired – a tiredness so severe that it is hard for you to even get up out of your bed in the morning. Can you imagine this wolf hurts your muscles and your joints not once or twice, but throughout the day and night? What about when it’s hungry? It feeds on you. The wolf slowly but surely damages major organs including your kidneys and skin, and it loves the heart, lungs and the brain. Because of this, the wolf causes headaches that are so painful that you cannot see. When you go to work, it is there. When you drive, it is there. In your room, it is there. When you sleep, it lies there.

The Big Bad Wolf is always there. And it is called Lupus.

Today is World Lupus Day, and although I can’t describe what it feels like to live with lupus, I can tell you what it is and what it’s like when someone close to you has it and the ways in which it affects them.

My mum has lupus, and it can really cause a daily struggle for her.

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Me and my mum, Gillian

Lupus the latin word for ‘wolf’, which is why I have decided to nickname it The Big Bad Wolf. The term comes from the Lupus vulgaris facial rash that resembles the bite of a wolf. It comes in various forms and it can affect people in a number of different ways and so I can only speak from experience and the way that it affects my mum.

To give you a bit of insight, the disease is defined by the charity, Lupus UK as being “an incurable immune system illness.. it can affect any part of the body and that’s the danger.” Many vital organs can be damaged in a way that is irreversible; principally the ones mentioned above – the kidneys, the skin, the heart, lungs and brain. Basically, my mums immune system attacks itself, and not only kills bad cells but good cells too.

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Let me tell you a bit about my mum – she is a positive, bubbly person and she is one of the most glamorous ladies. Always wearing her lipstick, hair and nails done and a smile upon her face, you’d never guess she wasn’t well. That’s what is frustrating. Lupus is a disease that is not always visible – but because you cannot see it, it doesn’t mean that it’s not there. My mum always has been and always is willing to go above and beyond to help others – especially me – before she does anything to help herself. She really is so selfless, and I am so thankful for that. My mum will power through things and a lot of the time her friends, colleagues and even family only see her when she’s either at her best or trying hard to mask her discomfort. It’s the invisible illness that nobody sees. Therefore, many people forget she has it or don’t realise how bad it actually is. She’s always trying to get on with life as normal. Recently though, she really hasn’t had much choice but to take it easy. It’s behind closed doors that she can give in to the Big Bad Wolf.

After being diagnosed a few years ago with a particular type of lupus called Systemic Lupus (SLE), she has more recently been diagnosed with Neuropsychiatric Lupus (NPSLE) – which unfortunately, is common to develop after diagnosis of SLE. My mum is actually in the middle of what is known as a lupus ‘flare up’ right now. She has been unable to work for over a month, has been put on new medication and has had some pretty horrible experiences in the past few weeks. She won’t tell her friends or colleagues in case they worry, but they must know how the disease really affects her.

She has lost her balance and fallen which has caused her to have nasty cuts and bruises all over her legs and rips in her jeans. As a result of this she has lost her confidence to go out alone to even walk the dog. She must always have someone with her. She’s lost confidence to get up and dance which is upsetting because it’s something she always loved to do. She’s lost confidence in walking up and down stairs. She now has a walking stick to use when her balance feels off, and this decreases the confidence she has in her appearance. She’s been unable to get out of bed due to lupus headaches and severe tiredness, which causes depression and worry. Because the weather has been so lovely, she’s been feeling low and very down and as if she is the only one stuck in the house all day. But when she goes out to sit in the garden, the sun can make her very unwell and the lupus attacks her skin, causing a red rash on her face. This then causes her to lose confidence in her appearance further. I have a very busy life and I am always out and about and feel terrible that I can’t be there all the time but she is supportive and wants me to work, socialise and have fun too. But can you imagine how that makes her feel, having this constant wolf following her around, never giving her a break, holding her as a prisoner?

As a woman who has been known to be the complete life and soul of a party, always out socialising and always having a get-up-and-go attitude to life, when hit with the extreme fatigue lupus causes my mum really gets down in the dumps. She always has copious amounts of energy, yet when these lethargic spells hit, the motivation takes a hit too – both physically and mentally. This Big Bad Wolf just will not leave her alone.

It affects every aspect of her life and unfortunately it is incurable. It has been likened worldwide to leukemia, muscular dystrophy and multiple sclerosis due to similar symptoms.

On this World Lupus Day I ask you to visit World Lupus Day  or Lupus UK, and if you can give a small donation towards helping to find a cure please do… and if not, at least watch this video created by Lupus UK;

Keep Smiling,

Amber x

  • Stephen fleming

    Hi Amber never heard of this before but very interesting read. I have a auto imune disease called sarcoidosis it sound similar have a read about it suffer flare up not nice. Thought I would just comment as it was a good read ..Stephen

    • Amber Zoe

      Thanks Stephen, I'll have a look into that. Take care x

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