Friday, 16 August 2013

Something of the wolf- Life with Lupus


I realised earlier that I haven't mentioned Lupus on this blog yet, which feels crazy as it consumes my life. For those who don't know, Lupus is an autoimmune disorder which basically means that my immune system cant recognise what is and isn't supposed to be in my body, so instead of fighting infections it attacks bones, joints, muscles and organs.

There are so many symptoms of Lupus even the extensive chart above only shows the main ones. All Lupus patients are different and it can affect you from very mildly like just the facial rash to severely. I think I'm towards the severe end of the scale. The biggest thing with a lot of chronic illnesses is the fatigue, I'm nearly always tired and when I'm not busy I'm resting. I have to cancel a lot of plans because of my fatigue and some days I just can't get out of bed, making uni and work very hard.

Due to The Spoon theory chronic illness sufferers call themselves "Spoonies"

The easiest way to describe a chronic illness to someone who doesn't have one is with The Spoon Theory by Christine Mierandino . To put it quite simply everything you do today will cost you a spoon, whereas healthy people have unlimited amounts of spoons sick people will have quite a small amount and doing just simple every day tasks is exhausting. This isnt just because of exhaustion, it can take longer to do hair and makeup if you look particularly sick or your hair is thinning, if your stomach is bad you cant eat properly or may be on and off the toilet, if your bones hurt you mightn't be able to walk far. I have a range of clothes and shoes that suit me depending on what my bones are like, if my stomach is swollen and if my joins (wrists and ankles) need support, if I need support bandaged I need wider shoes and baggy jumpers. I'm also slowly coming to terms with the fact that I can't wear heels as much as I used to, so I look for cute but practical flats instead.

Lupus has affected my life so much that I don't even think about it as being different. But now I'm in education and want to start my career properly I'm starting to feel the pressures. I know now that I cant hold down a full time job or even work shifts as my Lupus doesn't have set hours.I'd tried full time work in the past but was exhausted and wasn't an asset to a company, unfortunately my boss wasn't understanding either.  This is why I do freelance PR and events, it means I get to choose my hours and what work I take on.

Butterflies are the symbol for Lupus due to the rash "lupies" get across our cheeks and nose but we're also known as wolves as the latin for wolf is lupus.

I'm also at uni full time, but its manageable because "full time" is about 2 and a half days. I've missed a lot of lectures and handed work in late because of being ill, I didn't find out until the end of term however that I could've handed in a Personal Extenuating Circumstances (PEC) form meaning that I could hand in work late and not get marked down for it. My advice would be to make your lecturers and support staff know about your illness and they will try and do their best for you. Also look into Disabled Students Allowance, thats where I got my Mac from and its really helped me with uni work.

I'm very lucky to have a great set of friends and a wonderful boyfriend around me at uni and work, meaning I have people on my course to help me pick up the slack, I have people to listen to my moans and help me and I have a boyfriend who'll look after me and help me plan things. One thing luckily people are starting to understand now is that I may have to cancel plans at short notice or leave things early.

I hope people read this post and understand my life a little bit more, I'm not looking for sympathy or special treatment. I just wanted to be accepted for who I am.


2 comments :

  1. Thank you for writing this post, it isn't something I've been able to do yet. Chronic illnesses are extremely hard to explain to people and you've done a wonderful job here. Thank you so much for the spoon theory too, I shall use that to explain for sure!

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  2. Both myself and hubby have chronic illnesses. So can understand how it is. The spoon theory is a great explanation.

    Lupus is a difficult one to diagnose if I remember rightly.

    Freelance work is definitely the way forward when you can't commit to schedules. Hence my own steps into that are being made!

    Thanks for sharing x

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