Another "F" word…. Fatigue #RABlog week, day 2

Day 2 Assignment:  Managing RA fatigue – We all know that fatigue is a big part of many of our lives. How do you manage that fatigue? Perhaps you like a warm cup of tea or a hot bath. We all have our coping strategies. Describe anything you do to help with fatigue. 

I’ve been tired since 1999.  Honestly.  I don’t remember a day where I felt full of energy since I was 29 years old.  Autoimmune diseases started hitting me around that age and everything sort of went down hill after that.  Webster’s dictionary defines fatigue as:  weariness from bodily or mental exertion.  How do I describe fatigue associated with RA?  It’s not easy, but here is my definition:  RA Fatigue is complete and utter exhaustion caused by intense pain that occurs while simply being.  No need for bodily or mental exertion at all.  RA fatigue is so similar to the feeling you get from the flu that it is often difficult to figure out what is wrong in the first few days of a flare up.  The fatigue is debilitating and nothing that I had ever experienced prior to being diagnosed with autoimmune diseases even compares.

I’ve tried all kinds of tips and treatments to help fight fatigue.  I’ve done diets, avoided caffeine, created a sleep schedule, added salt water to my diet, used essential oils, bought a new mattress topper, etc.  The only thing that ever truly helped me was meditation and yoga.  Learning to quiet my mind is difficult, but the calm and peace taught me how to hold the off the pain and sick-feeling fatigue.  Regardless of things I have tried or had some success with, fatigue is still my most difficult foe.  It makes the symptoms of my RA and fibromyalgia that much more intense.

The best advice I can give to others like me who suffer with RA fatigue is to be kind to yourself.   If you have to put your feet up on the couch instead of vacuuming.  Do it. (Coincidently, I’m doing that right now!)  Don’t beat yourself up over it.  Be honest with your needs.  Let loved ones know what you need and why you need it. Squeeze in naps.  Put your feet up when needed.  I used to think living with RA was the end of the world because it slowed me down so much.  I might be slower, but I’m still moving.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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