Thursday, 15 June 2017

Lupus and Managing Stress



Dealing with a chronic illness like lupus is stressful. Not only do you have to deal with debilitating symptoms and chronic pain, you also have to cope with medication side effects, medical appointments and diagnostic tests, employment troubles, difficulties in obtaining welfare, dealing with loved ones who don't understand, ignorant attitudes from society, and so on. Living with a chronic illness is a full-time job and it requires constant management.


Stress aggravates our illnesses, which adds more stress to the pile; leading to a vicious cycle of stress and illness. Dr Chris Iliades, MD, writing for Everyday Health says: ""A chronic disease like lupus, with symptoms of being tired and feeling ill, causes stress that signals your immune system to activate and causes inflammation. This can become a vicious cycle in autoimmune disease." 


Lupus UK adds: "Many studies have suggested that lupus can flare during times of stress. This has been shown to occur with major stressful events as well as with regular stress...Certain lupus symptoms, such as having difficulty with memory, have been associated with increased amounts of stress...People who have lupus and experience stress can develop increased flares of their lupus." 

Managing stress should therefore be an important part of managing your illness. There are many ways to help combat stress. Here are some suggestions:

Meditation and deep relaxation techniques:


Many people recommend meditation and deep relaxation techniques, because they are thought to help you focus on the present (mindfulness), calm anxious thoughts and control negative thinking, and help you manage stress, which may help you reduce flares and have beneficial effects on the body as a whole.


You can find lots of free online guided meditations here:

Guided meditations from Fragrant Heart:
http://www.fragrantheart.com/cms/free-audio-meditations

A free seven-lesson course in meditation:
http://learnmeditationonline.org/elearning/course/index

Free meditation experiences for adults and children:
http://www.freemeditation.com/online-meditation/

Guided meditations from Magical Living:
http://www.magical-living.com/guided_meditation.html

Free Guided Meditations from UCLA Mindfulness Awareness Research Center:
http://marc.ucla.edu/body.cfm?id=22b)



 

Write a daily journal:


Help Guide says that "A stress journal can help you identify the regular stressors in your life and the way you deal with them. Each time you feel stressed, keep track of it in your journal. As you keep a daily log, you will begin to see patterns and common themes."


Stress management techniques:


From www.helpguide.com:

  • Learn how to say “no”. Know your limits and stick to them...taking on more than you can handle is a surefire recipe for stress.
  • Avoid people who stress you out – If someone consistently causes stress in your life, limit the amount of time you spend with that person or end the relationship entirely.
  • Take control of your environment. If the evening news makes you anxious, turn the TV off. If traffic’s got you tense, take a longer but less-traveled route. If going to the market is an unpleasant chore, do your grocery shopping online.
  • Pare down your to-do list. If you’ve got too much on your plate, distinguish between the “shoulds” and the “musts.” Drop tasks that aren’t truly necessary to the bottom of the list or eliminate them entirely.
  • Express your feelings instead of bottling them up. If something or someone is bothering you, communicate your concerns in an open and respectful way. If you don’t voice your feelings, resentment will build and the situation will likely remain the same.
  • Adjust your standards. Perfectionism is a major source of avoidable stress. Set reasonable standards for yourself and others, and learn to be okay with “good enough.”
  • Don’t try to control the uncontrollable. Many things in life are beyond our control— particularly the behavior of other people. Rather than stressing out over them, focus on the things you can control such as the way you choose to react to problems.
  • Do something you enjoy every day. Make time for leisure activities that bring you joy.
  • Keep your sense of humor. This includes the ability to laugh at yourself. The act of laughing helps your body fight stress.


Cognitive behavioural therapy (CBT)


CBT is also recommended by some experts. Lupus UK says: "A study in 2010 taught a group of lupus patients how to handle stress using cognitive behavioural therapy (CBT). They found that the group of patients who learned appropriate ways of dealing with stress ended up with decreased depression, anxiety, daily stress, and symptoms such as pain. They also had an overall better quality of life compared to the lupus patients who did not learn how to deal with stress." 

If you want to try CBT, ask your GP if you can get a referral to a CBT practitioner. Please be aware that there is a long waiting list on the NHS here in the UK. Private options are available, though they are costly. However, there are numerous books, ebooks, podcasts, audiobooks, appsonline self-help, YouTube videos and other internet resources offering CBT exercises, which may help.

Meeting people


I'm not exaggerating when I say that networking with others going through the same thing has changed my life. Arthritis Research UK says: "Lupus is a difficult condition to live with and throws up many challenges. Meeting others with lupus doesn't necessarily remove these challenges but it can help you to cope with them by sharing your thoughts and concerns with someone who understands." 

Before I reached out to others, I was alone, isolated and angry, and I was dealing with my illness in negative ways that were detrimental to my health - binge drinking and smoking - which I stopped soon after joining online support groups. I have connected with thousands of people all over the world and have made many lifelong friends. My illness has taken away so much, but I have gained an inspirational family of the most caring, kind, and understanding people I have ever met. 


Creative Therapies


As a creative person, I mainly use creative art therapies to help me cope with chronic illness and stress. Many of my friends who have a chronic and/or mental illness find that adult colouring books help them cope with stress, anxiety and pain. I like colouring too - I find that it is a wonderful method of distraction.

Expressing myself through art allows me to take back some control over my life and not let chronic illness dominate who I am. It is an act of defiance, a rebellion against the illness which has taken so much from me. When I create something, I am saying "This is me. This is what I can do. The illness is not who I am." The illness cannot take away what I create. Art allows me to take back my identity, which the illness is always trying to steal.


Sometimes, I don't have the words to describe what I am feeling inside; so I paint what I am feeling instead, throwing all my anger, frustration and sadness onto the canvas in explosions of paint. It is liberating and enables me to find new meaning in my life with chronic illness. Psychology Today explains that art therapy: "...is a form of “meaning making” that can be ultimately helpful in an individual’s adjustment and acceptance of serious or life-threatening conditions."

You don't have to be 'good at art' to be creative. No-one is judging your work and no-one will sneer at your work (if they do, just tip a bucket of paint all over them!). There are countless ways of expressing yourself, through painting, drawing, crafting, baking, music, writing, sculpture, digital art, film-making, or photography, and so much more. Use whatever method makes sense to you and don't be afraid to try out new things. Choose whatever appeals to you the most.  

If creative therapy is your thing, try out this excellent website, which has 100 ideas to get you started:

Expressive Art Inspirations: 100 Art Therapy Exercises

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I know that the various methods of stress management listed above may be easier said than done to utilise, but I hope you can find something that works for you. The most important thing to remember is that everyone is different, and what works for someone else may not work for you. The best thing to is try out different things until you find something that works for you.

If you have any tips you'd like to share, or if you wish to share your experiences, please add a comment below. I'm very keen to hear about what works for you in your own battles with chronic illness and stress. Thank you!

With love,

Atlanta x

5 comments:

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    1. Hi! Thank you so much for your feedback and thank you for reading! :)

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  2. This is a fabulous post! Thanks for actually putting a name to the "flare within a flare" concept. That's exactly what happens! My doctor always says "when you're in a flare, u tend to flare." And as I'm getting sicker and sicker, I try and remember his words. Hope you're feeling better soon. I'm sure you've been through your fair share of meds. I just started up cellcept again , with high hopes of breaking my current flare. Fingers are seriously crossed! Thx for blogging!

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    1. Hi Sara, thank you so much for reading my blog and for your feedback :) I follow your blog and read your posts. It is one of my favourite blogs to read. I'm so glad you understand and other lupus patients understand what I mean when I say "flare within in a flare," because my drs don't understand what I'm talking about lol. But it seems like you have a wise dr. I will remember his words too! Good luck with CellCept, that's the medication I currently take too! Hoping it goes well for you! :) I will keep checking up on your blog to see how you're doing :) Hugs ~Atlanta

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  3. Great post AK! I can see myself in this same position. Glad you are recognizing an issue that affects many of us and ways to deal with it.

    Karren | e-counseling.com

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