{"id":1199,"date":"2018-11-29T09:43:18","date_gmt":"2018-11-29T06:13:18","guid":{"rendered":"https:\/\/thefibro-lupusbutterfly.com\/2018\/11\/29\/what-not-to-say-when-you-have-fibromyalgia\/"},"modified":"2018-11-29T15:49:54","modified_gmt":"2018-11-29T12:19:54","slug":"what-not-to-say-when-you-have-fibromyalgia","status":"publish","type":"post","link":"https:\/\/thefibro-lupusbutterfly.com\/?p=1199","title":{"rendered":"What NOT to say when you have Fibromyalgia"},"content":{"rendered":"<p>I have Fibromyalgia and fight the pains in my body 24\/7. It is a seemingly never-ending whirlwind of pain and labeled an invisible illness because those of us who have it look pretty darn good on the outside, but on the inside we are battling those pains through the smiles we have programmed ourselves to have.<\/p>\n<p>Why?<\/p>\n<p>Well, for me, because I genuinely try to find something to smile about&#8230;but usually because I hate that dread question of &#8220;So how are you doing today??&#8221;<\/p>\n<h3>Whoa, now! Do you really want me to ANSWER that&#8230;?<\/h3>\n<p>Well, okay, let me give you a glimpse of what my answer will NEVER be&#8230;<\/p>\n<p>I am at the store and you see me and stop to chat&#8230;<\/p>\n<p>&#8220;&#8230;um, thanks for asking. If you really want to know, as I stand here and speak to you, my body is screaming at me in pain and I am wondering what in the world I am doing here feeling this way. My lower back is yelling for the heating pad, my feet feel like they are swollen and my toes hurt with every step and it is painful to even walk and as I stand here I am wondering how I&#8217;m going to make it through this store and into my vehicle. My knees hurt so badly that I try not to limp when I walk, my fingers have lost their dexterity and it hurts to bend them, let alone hold onto the cart, and the haze in my head will either explode into a migraine or cause me to wonder what I was even saying to you in the first place&#8230;.&#8221;<\/p>\n<h3>What was your question again?<\/h3>\n<p>Or I could respond with&#8230;<\/p>\n<p>&#8220;Thanks for asking! My Fibromyalgia is still causing me issues, but it is nothing compared to my husband who has bone marrow cancer and at each weekly blood test, results could come back saying its turned to AML (acute myloid leukemia) and he will have to have a bone marrow transplant ricocheting us into a place we are not ready to go. His blood transfusions are about every 11 days and he still works full time. Oh, and did I mention we are completely remodeling our house without a contractor? Yep! In between those transfusions, my daily pains, and schooling all those kiddos, we have been taking out walls, putting up headers, painting, staining, laying backerboard and new flooring, wiring up new outlets for my coffee bar, trying to find the table to eat, homeschool academically, and play Bluegrass music on the weekends? I fall into bed at midnight after a hot shower, heating pad and (foot rub by a daughter, if I&#8217;m lucky) just to start again the next day knowing that my desire to have order in my home again is almost equal to how bad my body hurts each moment of each day&#8230;&#8221;<\/p>\n<p>So, instead I smile and respond with&#8230;<\/p>\n<p>&#8220;Doing great!&#8221;<\/p>\n<p>And I really am.<\/p>\n<p>Yes, my pains can be pretty bad.<\/p>\n<p>Yes, getting up from a chair makes me look 88 instead of 48.<\/p>\n<p>Yes, I have days I can barely get out of bed&#8230;but I do.<\/p>\n<h3>I have learned that my creativity is a natural endorphin for me and this whole house remodel has my creative juices overflowing, which, in turn, keeps me going.<\/h3>\n<p>When I stop to rest, the pains creep up on me and makes me wince, so I usually keep going.<\/p>\n<p>I am exhausted!<\/p>\n<p>So is my husband, whose cancer battle is red blood cells that his body does not allow to mature to give him the energy he needs.<\/p>\n<p>I&#8217;d rather have the Fibro.<\/p>\n<p>It won&#8217;t kill me&#8230;even if most days I feel like road kill left for dead.<\/p>\n<p>That is my blessing and I&#8217;ll take it!<\/p>\n<p>May you find the blessings in your day!<\/p>\n<p>God Bless!<\/p>\n<p>~The Fibro Momma of Ten<\/p>\n ","protected":false},"excerpt":{"rendered":"<p>I have Fibromyalgia and fight the pains in my body 24\/7. It is a seemingly never-ending whirlwind of pain and labeled an invisible illness because those of us who have it look pretty darn good on the outside, but on the inside we are battling those pains through the smiles we have programmed ourselves to&hellip; <a href=\"https:\/\/thefibro-lupusbutterfly.com\/?p=1199\" class=\"more-link\">Continue reading <span class=\"screen-reader-text\">What NOT to say when you have Fibromyalgia<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"ngg_post_thumbnail":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[1],"tags":[],"class_list":["post-1199","post","type-post","status-publish","format-standard","hentry","category-uncategorized","without-featured-image"],"aioseo_notices":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/ph40Aj-jl","jetpack-related-posts":[{"id":1756,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1756","url_meta":{"origin":1199,"position":0},"title":"Recovering from a Routine Change is Rough when you have Fibromyalgia and\/or Lupus","author":"Fibro Momma of 10","date":"April 29, 2026","format":false,"excerpt":"Keeping a routine is crucial when you suffer from Lupus and Fibromyalgia. It can take days to recover from a routine change when you have Fibromyalgia and\/or Lupus. When your routine changes, the pain levels soar, energy levels decrease and cognitive issues begin. The first clue my body gives me\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/thefibro-lupusbutterfly.com\/wp-content\/uploads\/2026\/04\/20260429_100334-480x640.jpg?resize=350%2C200&ssl=1","width":350,"height":200},"classes":[]},{"id":1840,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1840","url_meta":{"origin":1199,"position":1},"title":"A Husband&#8217;s View of Lupus and Fibromyalgia","author":"Fibro Momma of 10","date":"May 8, 2026","format":false,"excerpt":"In honor of National\u00a0Lupus Awareness Day (May 10th) and National Fibromyalgia Awareness Day (May 12th), my hubby wrote a few words to share with other husbands who are wanting to help their wives who are battling Fibromyalgia and\/or Lupus. \"As a husband living with a Fibro\/Lupus sufferer, it can be\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/thefibro-lupusbutterfly.com\/wp-content\/uploads\/2026\/05\/Screenshot_20250810_210737_Facebook.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/thefibro-lupusbutterfly.com\/wp-content\/uploads\/2026\/05\/Screenshot_20250810_210737_Facebook.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/thefibro-lupusbutterfly.com\/wp-content\/uploads\/2026\/05\/Screenshot_20250810_210737_Facebook.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/thefibro-lupusbutterfly.com\/wp-content\/uploads\/2026\/05\/Screenshot_20250810_210737_Facebook.jpg?resize=700%2C400&ssl=1 2x"},"classes":[]},{"id":1301,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1301","url_meta":{"origin":1199,"position":2},"title":"A Beautiful, Spring Fibromyalgia, Self-Afflicted Pain Day!","author":"fibropage1","date":"June 11, 2019","format":false,"excerpt":"I awoke to a beautiful, crisp spring morning. The breeze was coming out of the NNE. I poured a cup of decaf coffee (I have a PVC Heart Arrhythmia which means no caffeine). I went outside to sit on my new wooden swing and took in the day! It almost\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":1682,"url":"https:\/\/thefibro-lupusbutterfly.com\/?p=1682","url_meta":{"origin":1199,"position":3},"title":"Feeling run-over, but with no regrets","author":"Fibro Momma of 10","date":"April 9, 2026","format":false,"excerpt":"Yesterday I did a thing and today I feel the affects of it. 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