Guest post: One method of coping with the struggles of lupus
Living and coping with the challenges of lupus can be daunting. It creates challenges that are unpredictable. These challenges can include pain, fatigue, trouble sleeping, trouble concentrating, and many more. Anna O Laoghaire, a social worker, and a lupus warrior, shares a unique view on how to cope. She models it after the “Spoon Theory” by Christine Miserandino. She puts a modern spin on it, comparing it to the well-known apps we use daily on our phones.
If you have advice, a unique way of dealing with lupus, or would like to share something unique about your journey, please contact me and submit a proposed blog post write-up. I cannot post most submissions due to limited time, but promise to do my very best. If nothing else, I learn how to be a better doctor by reading about what it is like to be the patient.
Here’s Anna’s submission (and thank you for sharing!):
The fatigue and lack of energy that comes with lupus, and other autoimmune conditions and arthritides can be difficult to understand, including for the person who has it.
I like to explain it this way:
Imagine that our energy levels are like mobile cell phones. You have the “Well-Plus model,” and I have the “Inflam-ED model.”
We both need to be charged overnight. We both have the same Apps:
The Getting out of Bed App, the Dressing App, The Cooking App, the Working App, the Shopping App, The Driving App, the Walking App……All the activities of daily living have an App on both phones.
The Apps on the Inflam-ED phone use more battery up than those on the Well Plus phone – even though we are using the same App for our daily activities.
One of the most frustrating things about the Inflam-ED phone is that the amount of battery energy used up changes all the time! One day, it may take up 2% battery energy to walk up the stairs. Another day it might take 7%. We cannot predict the usage!
The Well-Plus phone also has a smart charger. If extra battery life is needed for a special App, like the Going to a Party App or Attending a Meeting App, they can get a quick re-charge. Great feature– but it is not installed on the Inflam-ED phone. Sure, we try to conserve the battery by keeping App usage to a minimum, especially if something special is coming up. It helps sometimes, but not always.
The Inflam-ED phone does have a unique feature. It’s an App that runs in the background, switching itself on and off – it is The Pain App. The Pain App drains a lot of energy from the battery.
If we could fix our phone – we would! If there was a new charger for the Inflam-ED phone – we would buy it! If we could re-configure our phone – we would! If we could upgrade – we would!
This is part of the daily challenge for people like me. Be kind and patient with us and our Inflam-ED phones with the crappy battery. Now, where did I put my charger?
Anna O Laoghaire, Dublin, Ireland May 2022 (after Spoon Theory by Christine Miserandino)
Share your comments on how you cope with lupus
Anna is from Dublin, Ireland and has recently started to write during her retirement. After school at Mount Temple, where Bono of U2 was a classmate, Anna became involved in Social Equality and Women’s Rights issues. This prompted her to explore a career in Social Studies, and she entered Trinity College as a Mature Student of Social Work in 1991. Unfortunately, at this time, illness struck, and she was diagnosed with severe rheumatoid arthritis. Difficult times followed as Anna continued to study while caring for her young son. With determination and support, especially from her late mother, Nancy, Anna graduated in 1996.
The course of the illness progressed from rheumatoid arthritis to lupus. More recently, when features of scleroderma emerged, the diagnosis was reframed as Mixed Connective Tissue Disease. It’s been a long road, but she says, “Most of the things I was anxious and worried about never happened.”
During a course with Arthritis Ireland called ‘Behind the Pain,’ Anna was inspired to re-vamp the ‘Spoon Theory’ – to put a more modern twist on it.
Anna observes that the rigors of academic writing, social work report, and record-keeping dehydrated her creative juices. Something was needed to help knock this piece of writing into shape. Coincidence led her to a Zoom course called Writing for Wellness, run by Irish writer Anne McDonald. ‘The Phone Theory’ was born.
As a long-time supporter of The Lupus Encyclopedia, the work of Dr. Donald Thomas has been very helpful to her as a patient. As a person in a small country with a very small patient population, this link to expert information, research developments, and patient education were vital in her journey to stay well. “I could be a strong advocate for my clients as a Social Worker, but when it came to myself, I struggled at times. Being unwell can affect our confidence, and Dr. Thomas’ work was incredibly empowering. I sometimes printed out his information and brought it to my Rheumatology appointment.”
Anna is delighted to contribute as a Guest Blogger and hopes the ‘Phone Theory’ helps validate patients’ experiences and creates more understanding about this issue.
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