Living with Lupus

This is my best friend Beth. She has Lupus. Despite this, she brings a lot of love and laughter into my life, tells it like it is, encourages and prays for me, and bakes the most amazing cakes. I love Beth and am so grateful for her. This is her story, of life with Lupus, in her own words – although I take the credit for the grammar and punctuation!

“Well, how do I describe the disease that has caused the biggest change to my life plans and dreams than I could ever have imagined? It’s been a bit like a very slow motion but painful train crash. For me, it’s been like having the worst job in the world, but you don’t get to quit and rarely get a holiday. I used to be independent, travel the world, hike up mountains… Heather wrote in one of her Christmas letters that I made her tired just watching me.

Lupus is an auto-immune disease so I am my own worst enemy. My body’s own immune system – instead of coming to my defence – attacks me in all sorts of places: lungs, heart, joints and fatigue like you wouldn’t believe… I can sleep all day and night and it doesn’t seem to be any better. It has improved a bit with treatment but there have been times I have been so tired I could sleep round the clock and had to set my alarm to wake up for meals and tablets. Then there’s the hair loss, mouth ulcers, sores on my feet. You go back to bed after the shower because it felt like climbing a mountain. I’m also particularly sensitive to the sun and it makes the Lupus I have worse, so sun-block, hats, long sleeves and window film so the UV doesn’t get through the windows. And when everyone else runs outside I’m legging it as fast as possible in the other direction. But this means picnics, barbecues… all the summer social stuff… is incredibly hard and reminds me I’m not quite “average”.

But the treatment side effects have sometimes been worse than the disease: one medication caused me to lose over 10kg and only weigh 45kg, and most of that was muscle.

I have learnt who are my true friends and I have some of the most fantastic friends. Some people sadly struggle with me being ill and drifted away. It’s meant I have had to give up my career and my job as a nurse and I have had to swallow humble pie as I have gone from helper to needing lots of help even for the small stuff, like preparing meals and shopping.

But my hopes of a normal life died too, that of a family, house, children… all gone.

The thing is I often look well yet can feel so dreadfully ill. But it’s not all down-side. I’m lucky enough to have the most fantastic GP, Dr Baxter, who has saved my life on more than one occasion. He never doubted me in the 18 months it took to get a diagnosis. I have a pretty amazing set of consultants too. I have had 12 different consultants in 12 specialities in 12 years. With all the tests and blood tests that go with them. Occasionally communication is not what I would always like it to be in the cash-strapped NHS, but I don’t always do a good job at it either. I can get to be impatient at times. I’m on over 200 pills and am currently facing the prospect of learning to give myself intra-muscular injections for emergences for a condition related to side-effects of one of the medications I’ve been on long term.

Yet the other challenge was to learn to let God love me for being a human being, not what I could do for others or for Him. It’s challenged my faith and I have more questions than answers, but so far an undying belief that there is a God who cares about me. I know other people’s prayers have saved my life. But I hope I am also less judgemental, wondering why someone is the way they are if having a bad day, and know there are so many reasons we behave or act the way we do. I have learnt to try to enjoy the small stuff (watch the birds!), and there is nothing as good as saying today is a good day. They are rare but oh so wonderful.



One thought on “Living with Lupus

  1. Pingback: Fuzzy brains | interwebweaver

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