Living day-day with systemic vasculitis

This page is about:
  • The impact of systemic vasculitis on day-day life
  • Fatigue and pain with systemic vasculitis
  • Pacing and adapting with systemic vasculitis

The impact of systemic vasculitis on day-day life

Vasculitis can have a major impact on daily life. Among the people we spoke to, it was common to hear about unpredictable ‘good’ and ‘bad’ days. This could make people anxious about important events.

Jane X says a bad day with vasculitis means being prepared to cancel plans. This can be hard on family.

Steve is recovering from a relapse and “there have been days even quite recently when I’ve almost felt back to my old pre-illness levels of energy. Other days I feel absolutely terrible, and most days are somewhere in the middle.” Sharon will wake up to what she describes as a “get up and go” or a “hangover” day. A “good day” allows Holly to do one activity for her own enjoyment, such as cooking. Like Dean, people often told us it is routine to “just do day by day, if I don’t feel right I do nothing.”
As well as good and bad days, people talked about how the daily impact of vasculitis changed over time. For the past year, Salma has noticed a slowing down. In contrast, over the last six months, Gail has felt “a bit more able in myself to do things.”

With vasculitis, Salma can do more some days than others, and is taking longer to cook a meal.

Gail felt a turning point in living with vasculitis, so decided to persevere with her treadmill. Although disappointed she isn’t losing weight, she feels “more like me again.”

Unusually among the people spoke to, Isabel and Jeremy told us that vasculitis has had little effect on their daily lives. Katy also said that, unless her urticarial vasculitis is active, “I get on with my day-day life and I manage still to work full-time. It doesn’t really affect me that much.”

If Isabel didn’t have to take pills every morning for vasculitis, she “would forget I’ve got it.”

Fatigue and pain with systemic vasculitis

People routinely told us their biggest problem day-day is fatigue, and that it is hard to get across to others what this is like. Isabella is generally well but has occasional days where fatigue is “like a big blanket over me.” Diane said fatigue is “like having a really bad hangover but having it for days and not being able to shift it.”

Marie has fibromyalgia as well as vasculitis. Mornings feel “like being almost in a coma.”

Fatigue from vasculitis is like “wearing a suit of chain mail,” but Pete has learned to manage it.

Marie notices she feels more energised after singing, and Diane when she has been out for a walk; however, when they are fatigued, they don’t find it easy to make a start. Like Pete, Wendy has worked out her own strategies for anticipating and dealing with fatigue, while Mo has found fatigue management courses helpful.

When fatigue from vasculitis gets “dangerous,” Wendy organises herself so she can rest for several hours.

Pain was another common feature of daily life with vasculitis. People, including Marie, often talked about how they put on “a brave face every day.” Dean told us he has a hooded sweatshirt that says, “Although I’ve got a smile on my face, it doesn’t mean I’m not in pain, I’m just not allowing the vasculitis to rule my life.” Nerve pain means Brenda feels as if she’s walking on gravel but, “I’ve got used to my feet and hands and I just know how to cope with them.” While neurologists have given Wendy different drugs to offer pain relief, the side effects have been such that “I just think I’d rather have the pain as I know how to deal with it.”

Pacing and adapting with systemic vasculitis

Lynn summed up the impact of vasculitis on daily life for many of those we spoke to: “it’s like a juggling, balancing act all the time.” People used different ideas to describe their experience of having to pace themselves and adapt.

Living with vasculitis can make Melissa feel like a porcelain doll who will crack if she overdoes it.

At times vasculitis has been a “daily fight” for Peter, and he needs to “soldier on.”

Since having vasculitis, Claudia has learnt to pace herself. The idea of a limited number of spoons of energy helps her decide how much she can use in a day.

People repeatedly told us that it was vital for them to pace themselves and be ready to adapt by:
  • Listening to their body, and accepting what it is saying
  • Knowing their limits
  • Being strict about having periods for doing things and periods for rest or recharging
  • Planning ahead, with a plan B for any activity or event
  • Allowing more time for everything
  • Taking naps when needed
  • Scaling back plans and setting priorities
  • Recognising that being sociable takes effort

With vasculitis, Sharon finds a conflict between the things she wants to do and the effort it will take.

We heard that being sociable, especially in a group setting, could take particular effort if people had hearing or voice problems. Mo said that, before she was deaf, she was “very, very sociable” but is “not so sociable now.” This is because it takes more energy now to communicate well, which she finds exhausting.