Barbara Chidgey is the founder, chair, and driver of the Wales-based charity, Daring to Dream which supports the emotional health and wellbeing of adult patients, living with physical illness, in Wales. As part of her work with the charity, she also leads the charity’s annual online music festival, Lleswyl. She’s currently working on her professional doctoral degree within Cardiff Met Uni and is a patient advocate for the Bevan Commission. Having lived with 2 chronic conditions for decades, (and all the significant medical impact and crises related to those conditions and their treatments), Barbara understands what it’s like to navigate the healthcare system, find ways of coping (and living), and advocate for yourself.
And Barbara is not alone: 2021 research from UCL shows that a third of middle-aged adults in the UK are now living with at least 2 chronic conditions.
Barbara shares what it’s like to live with lupus and fibromyalgia, the strategies she’s learned over the years, and her advice to others living with similar chronic conditions.
Self-management and the art of pacing yourself
Since the early 2000s, Barbara has lived with 2 life-long conditions: firstly with fibromyalgia and subsequently with lupus. Barbara is also immunosuppressed, part of the treatment for lupus.
Fibromyalgia is a condition that has no treatment and causes widespread pain throughout the body, sleep problems, fatigue and mental or emotional distress.
Lupus is an incurable immune system illness which is probably genetic and mainly affects women. It tends to be triggered by hormonal changes and can cause irreversible damage to major organs. Symptoms include joint and muscle pain, extreme tiredness, rashes, anaemia, depression, headaches, fevers, hair loss and mouth ulcers.
“I’m always in chronic pain”, Barbara says, “it is just a matter of degree. You may see me laughing, leading challenging meetings, listening to someone telling me about their personal patient story, out for a meal with friends – but whatever I’m doing, I’m in chronic pain, even when I don’t seem to be.”
Barbara loves socialising, but has limited energy to do this. She does lead an active life – by being meticulous about organising her calendar, managing her very reduced energy levels and doing so for only a limited number of hours each day.
“If it isn’t in my calendar, I don’t do it. Even if it is in my calendar, I may well not have the energy or be well enough to do it”, Barbara explains. “I don’t sleep well. Poor sleep leads to greater pain and increases the fatigue and brain fog, so it is essential that at least 12 hours of each day is only about rest, relaxation and sleep. Everything I do (including housework, cooking a meal, going for a walk and all of my voluntary and academic activities) I must try to include within the other 10 -12 hours of my day.”
While planning her own schedule is a great help, meeting the demands of other people’s schedules takes a physical and emotional toll on her.
“I need all activities, meetings and projects to be planned and paced to meet my wellbeing needs. A project needs to be scheduled, balanced, and not overwhelm me in terms of what I can cope with, energy-wise. However, real life isn’t like that; the reality is I must often meet the demands and diaries of other people where changes often happen last-minute. I end up in a scenario that has too much happen all at once, get overwhelmed by it and then become exhausted and move into great pain.”
Barbara has learnt (through much hard won experience), that maintaining emotional health and balance is essential in order to pursue her chosen activities that she can enjoy, albeit for just her limited number of hours per day. “Challenging emotional scenarios create total mayhem with my ‘wellbeing balance’ and lead to severe pain, fatigue and other issues.”
She’s also learnt to factor in rest time following most activities, whether that’s a few hours or a few days.
“I love to travel and used to regularly go to Spain where I could plan 2 or 3 days to recuperate once I arrived. But more recently there’s a noticeable deterioration in what I can physically deal with. Carrying anything at all while walking is a real challenge that results in huge levels of pain and breathlessness, stress, and exhaustion. I need to seek new and fun ways of travel that will work for me. Travelling and visiting new and vibrant places is so exciting and very important for me.”
‘Is this a good use of my energy?’
Every decision Barbara makes about her schedule starts with asking two important self-coaching questions: ‘does this really matter to me?’ and ‘is it a good use of my energy?’.
“Going swimming and eating fresh, exciting food really matters to me, so they go into the schedule”, she says. “But if I’m asked to attend a meeting in person, I have to weigh up whether it’s a good use of my time and energy, when instead we can as easily meet and chat online .”
Using those questions helps her make choices about what she will do, how she will use her limited energy. Choices have consequences; so an early evening catch up with a friend (much needed good fun and chat) will result in very disturbed sleep in increased pain, and struggling to function at all the next morning with an overload of pain, fatigue and a real struggle to concentrate.
Barbara uses the spoon theory to help explain why she must plan activities around her energy levels. It’s a metaphor used to describe fatigue where a spoon represents a unit of energy. For example, making a cup of tea could be 1 spoon, going out for a chat with a friend could well be 10 spoons.
“Everything you do, from cleaning your teeth, to writing a funding bid, uses spoons (units of energy). You start your day with a number of spoons, and once they’re gone, that’s it. It is impossible to build ‘reserves’ and ‘going into energy-debt’ means this has difficult consequences of increased pain and struggling to function and subsequently, to get back into balance, rest is essential”
Life as a rich tapestry
When asked to describe her life with chronic conditions, Barbara pictures it as a rich tapestry.
“I imagine that I am represented by a piece of rich tapestry. Each thread represents something different in my life: my diet, my sleep, the medication I take, swimming, enjoying a glass of wine, socialising with friends or getting together with my daughter. If any one of these threads gets pulled or snagged, what happens? The rich tapestry that is ‘me’ gets scrunched up, pulled out of shape, and which results in pain and distress. The pain impacts physically, mentally, cognitively, and emotionally.”
These chronic conditions (and all the other conditions that have been generated as a result) are only a part of her, but their impact can be detrimental to her day-to-day life.
When asked what advice she’d give to other people in similar situations, Barbara suggests the following:
- Always question if something is important to you, and if it’s a good use of your energy. Build your calendar around these things, and don’t be afraid to say no.
- Think of your energy in small units like spoons to help you work out what you can commit to. While it can be frustrating, if something feels like too much, ask someone to help or do it another day.
- Plan rest time as well as activities. Sometimes it feels like we have to be productive all of the time, but rest, relaxation and recuperation is important for most chronic conditions.
Keep up to date with Barbara and her work at Daring to Dream: https://daringtodream.wales/
Get more information and support for living with lupus from Lupus UK: https://www.lupusuk.org.uk/
Get more information and support for living with fibromyalgia from UK Fibromyalgia: https://ukfibromyalgia.com/