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Beth, a lupus patient

Living with lupus – a patient perspective

Imagine having to plan each day according to units of your energy – making a choice between washing your hair and washing the dishes, as you haven’t got enough energy to do both. This is just one of the daily challenges that living with lupus can bring.

Beth's story

My name is Beth and I’m 34 years old. I was diagnosed with lupus eleven years ago after a long battle for diagnosis. 

Living with a chronic illness is a logistics project as much as anything. You have to be incredibly organised, whilst being aware that everything can change at a moment’s notice.

The Spoon Theory

I try to plan my life using ‘Spoon Theory’. This is an analogy invented by a patient who was trying to explain to a friend how it felt to have lupus. She used spoons from the dinner table as a visual aid to describe units of energy and how they have to be rationed and used carefully. You have a set number of spoons at the start of each day, and you have to decide how to use them, weighing up whether or not you have enough energy to do certain things.

Every activity - from getting dressed to walking to the station - can be considered in terms of units of energy. So you might find yourself having to choose between washing your hair and washing up. I have to carefully plan any tiring social or work activities, and try to make sure I always allow a rest day before and afterwards. Sometimes I will need several days to recover from a bigger event.

In the morning, it takes a while to get the body moving, and this can vary a lot from day to day. Having a shower, washing my hair, and putting on make up are all activities that use up spoons. Travelling can be particularly draining, but luckily these days I work from home, with no commute, which makes a big difference to my energy levels.

Balancing my life

The everyday worries are things like trying to predict a flare-up, or cope with one when it arrives, trying to constantly manage your energy and pain control, and battling your own expectations of yourself. Also, trying not to burden others with what you are going through can make you more anxious.

One of the hardest things to manage is anxiety.

Then there are your long term fears. I don’t spend all my time thinking about the future and all the what-ifs, it’s not a healthy way to live. There’s a balance to be met of owning your situation and not hiding from it, but also not letting it consume and paralyse you.

Living with a chronic illness that has no cure is scary, and of course I have fears about my own life expectancy, fears of the unknown and of how an illness like this may develop. But you have to find a place to put that away and live for the moment, live for the now.

Sometimes you have to give yourself permission to have a good cry or moan. But then you have to shake it off, shake off the self-pity and look at the sunrise.

When things are good you have to try and appreciate them because inevitably darker times will come, and when things are dark it’s important to hold on and remain positive, because they won’t stay dark forever. 

Beth, a lupus patient, on her laptop
Beth, at work

Examples of some of the challenges I face as part of my daily routine:

Getting Up

  • Deep breaths, expand lungs gently (lung damage from pleurisy and clots)
  • Put in eye drops (dry, sore eyes)
  • Take pain killers for headache (medication-induced headaches)
  • Use cooling stick on forehead (lupus patients often have permanently raised temperature)
  • Apply a heat elixir to ease joint aches/pain/inflammation (joint pain and inflammation) 
  • Use antiseptic mouthwash to wash out mouth and soothe ulcers (overnight blood build up and dry mouth)
  • Use hair removal products on face (steroid treatments can cause excess facial hair)
  • Apply high factor sun cream (lupus makes you light sensitive and can cause face blisters)
  • Apply creams for facial pigmentation. Use different blister creams inside nose, on bottom and legs. Massage legs to increase circulation.

Going Out

  • I wear a medic alert bracelet at all times so my medical records can be found quickly if I was taken ill or involved in an accident
  • In cold weather I suffer from Raynaud’s syndrome (another associated condition that affects blood supply to certain parts of the body) so I have to wear thermal gloves
  • I am sensitive to sunlight and can react with facial blisters, rashes and pigmentation problems
  • I use special high factor SPF under my makeup and wear a hat. I’m vitamin D deficient so I have to take additional tablets
  • As I take a blood thinner, I have to be very careful about knocking myself as I bruise easily
  • I suffer from daily dizziness which can escalate depending on what I’m doing, how tired/stressed I am or if I’m having a flare up