Happy Saturday lovelies, I hope, you all are happy, healthy and fabulous.💜 Today is May 12, 2018 and it is a day that has a meaning to me, it’s ‘Fibromyalgia Awareness Day’ I know that probably more than half of the world actually knows let alone understands this horrible, painful disease. Some of you may or may not know that I am a suffer warrior of Fibromyalgia and today I wanted to tell y’all what it’s like living with it.
*Disclaimer: everyone is different therefore everyone suffering is different. I’m not belittling other chronic illnesses, autoimmune diseases, cancers or and any other kind of of pain someone maybe suffering. I also am not writing this hoping to get sympathy or to have people take pity on me, nor do I feel sorry for myself. I am simply sharing my personal “relationship” with Fibromyalgia.*
I was 23 going on 24 when I got sick and never got better, I was sick for about 2 months be fore being diagnosed with my autoimmune disease Rheumatoid Arthritis, little did I know that would be the less agonizing and debilitating of my sicknesses. I was still having trouble that’s when my rheumatologist diagnosed me with Fibromyalgia, I think those words are what really changed my life verses his statement a month before “You have rheumatoid arthritis.” Fibro is a painful (not even if that stands close to the actual feeling) illness, it effects you in so many ways, not just your muscles. The ‘official’ medical definition is *widespread musculoskeletal pain* there are many symptoms from muscle pain to depression, Fibromyalgia effects EVERYTHING. Many go misdiagnosed due to the fact that that there isn’t enough research on it and absolutely no way to test for it, it can be brought on by physical trauma, surgery, illnesses/diseases and even physiological trauma. The best way to describe part of the feeling is, imagine you have the flu, but increase every single symptom by at least a 1000 and that is how our body’s feel in terms of strength and energy. There are things people say that sometimes hurt worse than our physical pain, the most common and irritating is “you don’t look sick” yeah guess what you don’t look like a complete moron but here we are having this conversation.
My experience: 4 years going on the rest of my life…
At first it was hard and devastating being told that I would never be rid of this pain monster in my body, the only comfort I felt with the diagnosis was that I had a reason for the pain. I stayed in a major state of depression for the longest time, yes I felt sorry for myself, I couldn’t understand, I had a healthy lifestyle, I had a full-time job I loved, I went to the gym 5-6 days a week after my morning coffee I drank water, I ate healthy I couldn’t wrap my head around it at all. I had to resign from the school I was working at which was heartbreaking I loved my kids with all my heart, for the longest time I didn’t do anything but sleep it was all I could do actually, everyday was something new, new pain and new sensations (not the good kind) I wanted to die. I had no energy and it wasn’t due to laziness it was solely because of the Fibro so I slept, it was an accomplishment to take a shower and wash my hair and washing my hair is still an exhausting accomplishment. Before finding a medicine that actually helped to control the agonizing pain I could have literally ripped my muscles out with my bear hands just to alleviate the pain, there were and still are days where the slightest touch hurts (clothes, blankets even the wind) I became extremely temperature sensitive, the heat hurts worse I feel like I’m being stuck with pins and needles, not like when your foot is asleep, it worse and painful. I hate waking up stiff and not knowing where the little demon is going to attack, it like a game, but you can’t escape and there is no winner ( Everyday, day, every, everyday… sorry I wrote winner and immediately thought of the K-Pop group and their new song/album. Can’t stop the K-Pop Stan 😊) I soon learned about ‘Fibro Fog’ what’s that? I’m so glad you asked, you can’t remember what you are talking about or what you ate for breakfast, I eventually just shrugged that off and laughed it off to make myself feel better. Some days are better than others, my pain medication keeps my pain at bay and I am able to function decently normal and other days I feel like I’m being tortured, little zaps all over my body, excruciating muscle pain, migraines, excessive tiredness, or just simply being uncomfortable. It’s been almost 4 years (Thanks giving will mark a full 4 years) and I can say 2 things with confidence 1) I will NEVER get use to this 2) I AM STRONG. Fibromyalgia has taught me a lot, it has taught me that looks can be deceiving, to cherish everything good that comes my way little and big, I also quickly found out who really cared in both friends and family. I have learned to pace myself and to know my limits, if I over exert myself physically or mentally/emotionally I will have a flare up that can last anywhere from 3 to 7 days.
People with Fibromyalgia have to learn to be strong, we learn to smile through pain, we walk through our own personal hells and nightmares everyday, 24/7, 365 and it does irritate us when people make stupid comments or try to belittle or compare their “pain” to ours, Fibro Warriors know that there are people who couldn’t last one minute in our position and we even pray they never have to. It hurts us when we have to cancel plans just because of this crap, we don’t want to, we aren’t being antisocial despite what people think. The symbol for Fibromyalgia is a beautiful butterfly, but I bet none of you knew that, I’ll tell you what some say the reason it is… Beautiful butterflies flutter around nearly weightless, when it lands it’s gentle, soft almost nonexistent, but to a Fibro Warrior just the slightest touch can cause immense pain, therefore we have a beautiful and gentle purple butterfly to represent this ugly and painful illness. We don’t want pity, we just want people to understand, so what if you can’t see it, you can’t see most cancers, however everyone acknowledges it (not belittling or comparing pain of cancer to Fibro) just because you can’t see it doesn’t mean it’s not real. The internet is a great thing, if you get the chance search the word Fibromyalgia and read, even if it’s just a little or at the very least don’t be so quick to judge someone, you don’t know if they’re struggling in their own Hell or Nightmare they don’t need a stranger or loved one to add to it, no matter what the situation may be.
This post was actually hard for me to write, I still suffer from depression, I still have to fake a smile when all I want to cry from pain. I am determined to not give up. I hope this post reached some in someway, whether it’s someone with the same illness or someone who has never even heard the word before. After today I will return to the usual posts lol. I hope you all have a wonderful day. I am going 2 links to websites that have info on fibromyalgia, National Fibro & Chronic Pain Association and Arthritis Foundation Until next post