The War Against Fatigue
Everyone probably battles fatigue at some point, but for those with an autoimmune condition, it’s a war. I have granulomatosis with polyangiitis (GPA), and fatigue is one of my biggest foes.
I can handle many of the GPA symptoms and medication side effects without too much of an issue. But fatigue really hits hard. After my 2001 diagnosis, I would often wake up feeling like I could sleep for 12 more hours.
I was in college when I was first diagnosed, and getting to class was a chore. I struggled with 8 a.m. classes, and I only took those when there were no other options.
Thankfully, I chose a career that is usually second shift, which allows me to sleep longer if fatigue makes its unwelcome appearance.
I finally developed a sort of trick that works if I wake up with fatigue. Instead of thinking about anything I need to do that day, I just think about getting out of bed. I put my full concentration into knowing that as soon as I start being active, the fatigue begins to melt away. It takes a massive amount of effort to get to that point, but it has worked for the last 10 or so years.
I also discovered that fatigue will hit if I get more than eight hours of sleep. Too much sleep — or too little — will take everything out of me.
Fatigue still hits me, though. My biggest challenge now isn’t getting up, it’s getting things done. I can’t handle too many chores in one day. The bigger the chore, the stronger the exhaustion. Yard work, for example, makes me tired for the rest of the day and the day after.
Fatigue has also kept me from engaging in social activities. I absolutely hate that sometimes I just don’t have the energy to do much of anything, which has led to a lot of canceled plans. I have also lost friends because they wouldn’t believe me and assumed I was just being lazy.
Fatigue is also the reason I’ve called in sick to work before. That’s always a challenge, because I would go to work the next day, and co-workers thought I was lying to get out of work. Apparently, if I didn’t have visible symptoms or a visible illness, I must not be sick.
A long time ago, I got tired of letting fatigue win all the time. I didn’t want to not have a life and not do fun things. So, I pushed myself to do more.
I went on vacations by myself to see if I could handle it. That way, if I couldn’t, it wouldn’t affect anyone else. I could take my time, go where I wanted when I wanted, and just lie in the hotel room if I was too tired. Every time I went, I had a blast. I always made sure I planned my vacation with an extra day off to recuperate after I got home.
Planning the extra day off worked so well that I applied it to other things. If I had a big chore ahead of me, I knew I had to make sure I had nothing planned the following day. I have grown less and less concerned about the fatigue by planning my life around it. That in itself sounds exhausting, but I have gotten used to it.
Now, fatigue is still a foe. It still wins sometimes. But I always put up one heck of a fight, and its victories are few and far between.
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Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
Comments
Dale
I still need a nap in the afternoon 2 years after being diagnosed.
Amy
Thank you for writing this. I just was diagnosed with GPA 9 months ago and almost died. I feel exhausted frequently and wondered if it was just my debilitation from being hospitalized and out of shape. Your article made me realize that fatigue is an ongoing symptom of my disease. I look forward to trying your advice. Thank you.
Sherry
I as well have GPA, you are right, the fatigue is the biggest problem, it’s hard to explain to people who don’t have this, therefore labeled as lazy.
Beth
I was diagnosed with Wegener's Vasculitis GPA July 2015 right before my 60th birthday. My doctors didn't think that I'd survive. It took me down! Stroke, malignant HTN, seizure/Pres syndrome,renal failure-& severe neuropathies & vision issues. This disease nearly killed me 3 times over & I just missed dialysis. I've been disabled since then - and the fatigue is awful and depressing. For the longest time I felt so alone. Now I nap almost every day, sleep 12hrs, I got a little therapy yorkie, try to visit or call my best friends and try to laugh every day!! This newsletter has alot of info-info that wasn't available to me back then. You have pray, laugh & take your nap! I still have my horse and I'm still praying that one day before I'm gone I'll be able to go for a ride-even if someone has to lead me around. Don't give up on your dreams! Don't give up at all! We are NOT lazy- just tired. This disease can suck the life right out of you! You have to take good care of yourself!
Andrea Butler
I have had Wegners (GPA) for 30 yrs as of June 1st, I am now pushing 60 yrs of age) when I started biologic treatment I went into remission for 10 yrs. Of course nothing can stay great forever, my biggest complaint is the fatigue, it really kicks my butt, I feel great while doing the activity but then I’m down usually for 2 days, as of late however I have been down almost a week, which is heartbreaking & scary me. Reading your article validated my feelings of fatigue, I am not alone in this, I am not crazy & it is not all in my head! I forwarded your article to my family & close friends to help them understand how I feel! Thank you for posting!