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Lupus and Self-Care

Updated: 4 hours ago


“Where you tend a rose...a thistle cannot grow.” - The Secret Garden

When asked by doctors or peers, “How are you doing? Are you taking care of yourself?” In response, I would venture to say that most of us lupus patients would answer (almost robotically), “Yep. Taking care just fine.”


Admittedly, I have been guilty of saying those exact words, however; I feel like a fraud. Do I really take care of myself? Or conversely, do I really treat myself with care? Truthfully, I have dishes that I handle with more thoughtful attentiveness than myself. In fact, in the hierarchy of my mind, I rate myself and my wants and my needs somewhere below my dog and above my goldfish on the family totem pole (sorry Goldie).


Do you care for yourself? I’m not trying to be facetious. Do you? If so, how do you care for yourself?


This blog is intended to delve into the definition of what self-care truly is and what it isn’t. Hopefully this becomes a reminder to you, as it has been to me, to remember to put the “U” back in lupus. And if you forget, there is another one right behind to remind you.


What Does Self-Care Mean?

In a nutshell, self-care is any activity that we incorporate into our daily lives that creates balance and fulfills our mental, emotional, and physical needs.


As simple as it seems, it can be very difficult to execute. Why? Though appropriate self-care has been linked to overall improved mood and reduced anxiety, it can be incredibly challenging to find the right balance for you, and for those who are around you. Additionally, it seems even more arduous to overcome the fictitious guilt that taking care of yourself isn’t actually “selfish.”


What Doesn’t Self-Care Mean?

“I pushed myself. I gave of myself. I gave and gave and gave, until I no longer knew who I really was. I was beginning to think I didn’t really exist at all. Any space I took up was only to assess and service someone else's needs. But, what were my needs? I didn’t seem to know…” - said every person with lupus...ever.

“Self-care is never a selfish act—it is simply good stewardship of the only gift I have, the gift I was put on earth to offer to others.”-Parker Palmer


Knowing what self-care isn’t is even more important than knowing what it is. Self-care does not equate selfishness. Self-care isn’t vanity, self-righteousness, or narcissism. It isn’t overindulgence either. It is the acknowledgement that if you don’t take care of yourself, you will not be able to take care of others. It is understanding what we need in order to be a healthy functioning human being and take care of ourselves as a whole - so we have the energy, enthusiasm, and empathy to give to those around us.


Self-care is the key to living a life of balance. It is also the key to living a life of blessing. Ever heard of the old motto “love your neighbor as yourself?” Hmmmm….how can you feel loved and blessed and love and bless others if you treat yourself a smidge better than you treat the family goldfish?


How Do You Start?

“Talk to yourself like you would to someone you love.” - Brené Brown

I agree with Brene', but I would also say… treat yourself like someone you love. You cannot wait until you are burned out and stressed out before initiating a self-care routine. Would you wait until your car ran out of gas and you were stranded on the highway before you filled your tank? I am assuming the answer is no. If you wouldn't treat your car (an inanimate object) with such neglect, why would you treat yourself with such low regard? This is important. Like putting gas in your car before you are riding on fumes, self-care is something that you actively have to plan. It is a choice you make and a promise to yourself that you stick to. Before you are stuck on the highway of life because you let your tank go below “empty.”


Here are the basics to self-care:


  • Make a list of things that bring you joy, peace, and centering. It might be taking a walk, a bath, or listening to a daily meditation or guided prayer lesson. Over time try to incorporate the forms of self-care that work best for you into a consistent routine. Get into a rhythm of setting time for appropriate and necessary self-care.

  • Add your self-care activities to your calendar, be vocal about them with family and friends, and be intentional with seeking out opportunities to enhance your self-care routines. Self-care is something that you have to actively plan, it is not going to just happen on its own.

  • Be mindful of why you are choosing to participate in self-care when you are doing it. You might need to repeat a mantra to yourself like this, “I need to do this for myself, because my body is worthy of being taken care of.” Take a mental inventory of what you choose to do, how it feels, and what you feel like after.

Why It is So Important

Self-care looks different and feels different to every person. But, if you are living with lupus it is important to realize that there are scientifically proven consequences that can happen when you deprive yourself of self-care. These consequences not only affect you individually, but may have a collective run-off effect on society as well. Think I’m being dramatic? Take a gander at this excerpt from the British Journal of General Practice, published by the National Institute of Health.

“The effects on patients' quality of life and the costs to society of poor self-care are considerable.
  • Self-care affects health outcomes through several pathways:11

  • adherence to treatment regimes;

  • maintenance of good physical health through lifestyle choices (for example, diet, not smoking);

  • monitoring symptoms to inform treatment/self-care decisions;

  • monitoring and managing stress and/or emotional consequences of illness;

  • interacting effectively with health professionals to ensure that patients' needs are expressed and addressed; and

  • using social support networks to help to achieve the above.”

Colin J Greaves, BEng BSc PhD, NIHR Senior Research Fellow in Primary Care and John L Campbell, MB ChB MD, Professor, Supporting Self-care in General Practice,

Abstract, 2007 Oct 1st


Feeling overwhelmed?

Let’s simplify. Here is a simple point-by-point checklist to help guide you.

  • Trim the fat. Meaning, create a “yes” list and a “no” list, with things you know you want as a part of your daily routine and things you want to eliminate. Examples of your “yes” list might include: yes to family movie night, yes to afternoon walk, and yes to reading in bed. Examples of your “no” list might include: no social media at certain hours, no cell phone in bed or after a certain time at night, not answering your emails during your lunch hour or after hours.

  • Eat for your body and mind. Make smart nutritional choices.

  • Get 7 to 8 hours of sleep each night.

  • Comply with your doctors orders. That means taking your medication as prescribed and following through with procedures, labs, doctor visits, and nutritional protocols.

  • Get moving and exercise. Exercise is just as important for your emotional health as it is for your physical health. It increases serotonin levels, leading to improved energy and mental state. It is also the only thing scientifically proven to help lessen lupus fatigue.

  • Use relaxation exercises and/or practice meditation. You can do these exercises at any time of the day.

  • Do at least one pleasurable activity every day; from reading a good book, to cooking, gardening, watching your favorite show, or talking with friends.

  • Look for opportunities to laugh! “A cheerful heart is good medicine.”


Conclusion:

Self-care is not a fad. Nor does it have to be a big fanfare. It can be as simple as lighting your favorite candle or using some of your favorite bath salts. However, it is something that will have a detrimental effect on your future if you forgo it. “As well as being a crucial element of illness management, self-care in the form of day-to-day ‘lifestyle’ behaviors (such as diet, physical activity, smoking, and drug use) is also the basis of much preventative health care.” NIH, Public Article PMC5923278


Do you think you are worthy of taking care of? I think you are. If you have been neglecting yourself, it is time to remember that “Every man stamps his value on himself...man is made great or small by his own will.” - J.C.F. Von Schiller. So stamp yourself as valuable and treat yourself well. For you are treasure to the world.


Written By:

Kelli Roseta


**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.


Sources:

https://psychcentral.com/blog/what-self-care-is-and-what-it-isnt-2/

https://www.lupus.org/news/lupus-foundation-of-america-develops-online-selfcare-management-programs-to-empower-people

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5923278/


November 2020


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