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Sophie – a carers story

She's a Psychologist, Banker, Teacher, Entrepreneur; Chef, Housekeeper, Taxi Driver, Cleaner; Events Manager, Doctor, Friend and a billion other things. She's intelligent, funny, courageous, ambitious, driven and incredibly humble. To me she knows everything and nothing can knock her down. In my eyes, my mum truly is one of the most amazing people in the world.

What makes her so amazing? She does all of this whilst fighting Multiple Lupus, Kidney Failure, Arthritis and Costochondritis. Spending every day in pain, still managing to hold down a job and keep our heads above water.

I've been a carer for my mum since I was about ten years old and even though I'm twenty one now, I can still remember that first Lupus attack like it was yesterday. I can remember how scared I was; how unsafe I felt when nobody could tell me what was going on. How angry I became at the constant uncertainty of all the so called professionals. I was young and scared and I didn't have any idea what to do; the frustration that nobody could give me the answers I wanted was unbelievable.

Medical research has moved on dramatically since then of course, but, as many know, not far enough. There is still no cure for Lupus and today, charities like St Thomas' Lupus Trust don't get the funding they need to conduct the research needed to find a cure – an endless cycle that will continue unless people step up and help.

When we found out what was wrong with mum and what Lupus was, I just remember feeling devastated. Having to watch my mum just accept the fact that her life had turned inside-out was really hard for me and I wanted nothing more than to just, wave a magic wand and make all her pain go away. However, I soon learnt that was the farthest thing from possible. I found myself having to grow up incredibly quickly and on a daily basis, deal with a lot of emotions: frustration, anger, helplessness; strength, patience, fear.

I started to understand that mum couldn't do all the things she normally did – the washing, cooking, drying, cleaning, driving – all the normal, everyday things that she could do before, became a daily struggle and if she did too much, her body would soon make her pay for it. Some days, she couldn't even get out of bed. This was really hard for me. Having to, at the age of ten or eleven years old, learn how to run a house and pay bills was terrifying. What if I got something wrong? What if I couldn't be as good as mum? Luckily, mum was with me all the way, despite her health, guiding me and helping me to understand the new challenges I had to face.

Then, after many years of wrong diagnosis' and a multitude of drugs for everything from Hypothermia to Cancer, eventually, with the help of strong medication and a few incredibly good Doctors, my mum managed to get her Lupus under control and today, although things aren't great, they are at least better. She still gets her knock backs, but she always manages to bounce back. I don't know how she does it, but she does. She has ambition and courage and despite everything that has happened to her, she still manages to wake up every day with a smile on her face.

On my side? Well, as I've got older and continued to care for mum, I've realised that just because she is the one that has Lupus, doesn't mean she's the only one who has to deal with it. I'm not just a carer to her; I'm a daughter and best friend. I am the anger management team, driver, chef, nurse; philosopher, researcher, fundraiser, listener and creative guru. I am so many things I never thought I'd be and for those of you who aren’t in a similar position, yes it's hard. I have been doing all of this whilst studying at School, College and University levels, passing with good grades and working part-time when I can.

I have a social life, family, a boyfriend, his family and career plans and because those sorts of things can't just be put on hold, I work long hours and busy days. Of course juggling so many things can be a pain, but, at the end of the day, I feel like I'm making a difference to my mum’s health; helping her as much as I can means that she can focus on her good days - going out, pampering herself and genuinely enjoying one of her low-level pain days, without having to worry about trivial things like washing and cooking.

One of the hardest things I have to deal with though, is her stubbornness, which can lead to heated arguments and lash-outs. This is due to the amount of pain she is in of course, but that doesn't always make it OK. It took me a long time to get the courage to stand up to mum; to argue back when she's being unreasonable and to understand when to just walk away and give her space.

I think that's one of the things a lot of carers find difficult – how do you react when someone you love is in so much pain, they just want to shout and scream and give up, asking you to take away the pain they have? And how do you deal with knowing you just have to sit there and comfort them, unable to do anything but offer to get them whatever painkillers you can? It's one of the most horrible positions to be put in, especially when you're young and inexperienced.

Things are different now, now I'm the one telling the paramedics how it's best to treat my mum when she's having an attack. I'm happy with how open I am with my mum about how I feel and how her pain, attacks, mood swings and behavior can affect me. I've learnt how to deal with everything and I learnt it all through trial and error, something that I feel, people who have to deal with Lupus as young as I did, shouldn't have to do. There should be information readily available in all hospitals about the illness and how those caring for people with Lupus can deal with it - both physically, mentally and emotionally.

There should be people that have been through it, who are easily contactable via phone or email for those who are scared, confused; upset, angry or who may just need someone to talk to about Lupus and the effects it has on them and their family. And that is why I'm sat here writing this. St Thomas' Lupus Trust has given me the opportunity to reach out to carers through this little piece and I can't thank them enough for that. Lupus is difficult to deal with as a carer and not many people understand what you go through on a daily basis. But it's OK, because there is always one person out there who knows exactly what you go through and I'm one of them.

Below, you can find links to Beat the Butterfly, a campaign I set up to help raise awareness for Lupus; working with St Thomas' Lupus to bring the illness into the spotlight, to help get funding for Lupus research to help find a cure.

If you're reading this and you want somebody to talk to, I really am only an email away.

Thank you,
Sophie-Louise Lilley

Email Me Here: beatthebutterfly@gmail.com
Follow Us on Twitter: https://twitter.com/BeattheB
Help Spread the Word on Facebook: https://www.facebook.com/BeattheB
You Can Read My Mums Story Here: http://beatthebutterfly.com/mandy.html

Thanks from us to Sophie-Louise for telling us her story. If you live with someone with lupus and would like to tell your story we’d love to hear it so please Contact us.