Living with the practical impacts of systemic vasculitis

This page is about:
  • Independence and systemic vasculitis
  • Travel and systemic vasculitis
  • Driving and systemic vasculitis
  • Physical activity and systemic vasculitis

Independence and systemic vasculitis

People told us how important it was to be independent. However, having vasculitis often meant they had to:
  • Rely on others more than before and ask for help
  • Find new ways to do things using gadgets and adaptations
  • Accept there were things they could no longer do

Vasculitis affected Charlie’s windpipe and voice. He often depended on his wife to speak for him.

Sharon wants to be independent in spite of vasculitis, but “nip to the shop” can be too much.

When Wendy had a vasculitis relapse, her son helped her make a list of everything that needed to be done and work out who would do it. She also uses a disabled parking badge and shops online. Gail prefers to do things herself but asked a family member to go under the sink to deal with a loose tap as, “I can’t get down because I’ll not get back up [laughs].” To help them do things in spite of their nerve damage, Brenda bought comfortable shoes and handwarmers and Isabella a vegetable chopper. Holly can do more now she has a shower seat, wet room and wheelchair, but vasculitis has brought with it “a great sense of a loss of independence, which isn’t nice.”

Travel and systemic vasculitis

Peter, Graham and Brenda were disappointed that vasculitis stopped the long-distance travel they previously enjoyed. Angharad was among others who felt that travelling was worth the extra planning and effort involved.

Vasculitis meant Peter had to give up motorcycling and long-distance travel. This is “painful.”

Because she has vasculitis, Angharad has to plan carefully and book assistance when travelling overseas.

In addition to financial considerations and how easy it was to get health insurance, people told us their decisions about overseas travel were influenced by:
  • Advice from doctors
  • Their age and general health (and that of their travelling companions)
  • How comfortable they felt about managing their vasculitis and medication and how easily they could put things in place to help them get about
Brenda said she has “been told I can’t travel outside of Europe or North America.” An occupational health doctor suggested to Diane that long-haul flights “wouldn’t be wise,” but she has found it works if she takes precautions and allows for being exhausted from the journey. Isabel is planning a cruise as she feels well, but Graham and his wife have “both decided that we’re just not fit enough.”
Nicky did most of her travelling before she knew she had vasculitis, but now takes precautions due to her increased risk of a deep vein thrombosis (blood clot). On a flight to New Zealand, she wore support stockings, walked around the plane, kept her toes and legs moving, and didn’t drink alcohol. Jeremy went to Australia and took extra steroids in case they were needed. His vasculitis rash flared, so he emailed his consultant who said to increase the steroid dose and come in for a review when he got back. Gail is planning a trip to America with a friend and has bought a mobility scooter that can go in a car boot.

Driving and systemic vasculitis

Although a number of the car drivers we spoke to were still driving, it was common to hear that vasculitis had placed limits on it. Dean, for example, can’t drive for as long as he did before.

As vasculitis has affected Graham’s vision, he has to drive slowly and carefully.

Brenda couldn’t drive until the nerve damage from her vasculitis improved. She now uses an automatic car.

Like Brenda, Gail has nerve damage. She didn’t drive for six months as she couldn’t use foot controls. This made her “really dependent on friends.” Through a government scheme that helps disabled people lease adapted cars, she now drives with her hands. Although it was “scary” at first, “the car is amazing and I don’t rely on people, I just do everything myself.” Angharad’s car “has essentially been my lifeline.” She’s glad that vasculitis hasn’t affected her ability to drive but has a steering knob to help with the physical effort of turning.
People who could no longer drive felt the loss sorely. To see a physiotherapist eight miles away, Lynn now had a “walk down to the bus stop, a bus out to the city and then a twenty minute walk up to the hospital.” Richard’s wife drives, but he finds it “frustrating having to rely on folk for help.”

Physical activity and systemic vasculitis

We often heard that vasculitis put a stop to physical activities people enjoyed. Pete’s “favourite pastime” was mountain hiking; now, “I can go out today and walk for five miles and feel neither up nor down, but if you put a hill in the way I struggle.” Because of the infection risk, Melissa and Wendy can’t go swimming. Gail stopped line dancing due to nerve damage in her feet. Graham gave up golf and bowling as he couldn’t see properly. Wendy and Angharad can’t walk their dogs as often or as far as they would like.
It was also common to hear about people returning to physical activities once their vasculitis was treated.

As her vasculitis recovery continues, Isabella is enjoying outdoor exercise and using a fitness monitor.

Often physical activity was part of a plan to improve fitness, with some people hoping it would help them lose weight. Karen joined a gym and worked with a personal trainer when “suddenly something twigged in my head that I’ve got to change and I’ve got to sort of try and embrace life again and become fitter.” Jane X does aerobics classes, Nicola had started running again, and Dean goes to the gym. Gail uses a treadmill, and Jane an exercise bike. Brenda has been skiing and plays golf. Grant misses football and other sport, but is “working towards trying to pick myself back up” in terms of fitness “as and when my body will let me.” Some people who have gardens used this as an example of physical activity they enjoy, although not for as long or to the same extent as before. Richard used to be able to do a day of gardening and now “two hours will be the limit” as he doesn’t have the same stamina.
Diane, Angharad and Lynn have problems with their heart as a result of vasculitis. All wanted to return to the exercise they enjoyed but had lost confidence. Specialist rehabilitation and ‘exercise referral’ schemes made a difference. For Lynn “it was just the most fantastic thing because it was about reclaiming Lynn, reclaiming a part of me that I thought that I’d lost.”

Vasculitis damaged Diane’s heart. Supported fitness schemes helped as she was “afraid of exercising.”

Among the people we spoke to, Nicky and Charlie had unusual examples of the limits vasculitis can place on physical activity.

Until her vasculitis was treated, Nicky at times “physically couldn’t blow” her oboe.

The tracheostomy in Charlie’s neck allows him to breathe but he can’t blow on his food, sip drinks, or use a straw. He also has to be careful with activities such as gardening because bending down or moving his head too much could “jar and move and change the device in a way that could be either very painful or limit airflow.”