I wonder sometimes whether people truly understand you. Do they get what you’re saying to them. Do they actually listen. I’m a person where I’m always there for others. I’m a very good judge of character. Just because my face says something don’t think I’m not thinking something else.
A couple of weeks ago I was in the middle of having a flare. My Fibro fog was ridiculous & I couldn’t speak. I was on the phone to my friend & she couldn’t understand what I was saying. I broke down. I couldn’t believe I couldn’t speak. I was so embarrassed. She reassured me but I still was upset.
When someone asks me about my labels or how I’m doing I try my hardest to sugar coat it. I don’t want to be a “sufferer”, I don’t want to show weakness. I don’t want to be the “pity party” because I truly am not that person. I like to think I’m quite the opposite.
If I was to ask someone else, I’d expect them to be truthful because I wouldn’t think of them any less or more if they were to be honest or sugar coat their story. I want to know so I can help you in some way. I want to know so I can try think of something that will take your mind off your labels for even a second. So why do I do this to other people. Why do I build this wall of “fine” when sometimes I’m truly not.
Sometimes I want to lie in bed all day sleeping or binge watching Netflix. The most I want to do sometimes is just eat, sleep, take my meds, eat, sleep, take my meds. Sometimes I force myself out of bed and the house. I get up early so I can do something that will occupy my mind. Last week I begged my mum to go ASDA. Why? I hate my ASDA. I just didn’t want to go home. My doctor says “keep moving” & I try. If I was to go home I’d sit on the couch then I’d get stiff & achy but then if I was to keep moving I’d get achy & my pain would worsen. It’s a no win situation.
I hate when people use the term “lazy”. It lights a fire inside me. Sometimes I can’t be bothered to do stuff, who doesn’t? but other times I physically can’t do it. 9/10 times I need to know plans in advance. I don’t have a get up and go, I have a planned get up, a certain amount of time to get ready so I’m not late, a full plan in my head on where we’re going and where I can stop for a rest & how much energy I will need for that trip, I need to know times, I need to know I’m near a place to get a drink so i can take my tablets, I need to know the finer details. I need a plan. I get told all the time “you’re the organiser” & I am. I organise majority of outings with my friends. Not because I’m bossy or think i should be in charge but because I then know and can calculate every detail.
Sometimes I struggle to push through the bad days. I follow all these pages on social media so when I need the push I go onto their pages & they truly inspire me. I follow a guy on Instagram & if you have fibromyalgia you should definitely go follow him. He’s called the Fibro guy. He’s amazing. People go to him in wheelchairs and on crutches and months later they are running around unaided. Amazing. It’s amazing to watch that there is light in all of this. There is hope in the pain and struggle. Today maybe a bad day but tomorrow maybe the best day.
I know it’s hard. I know if you could change it you would. I would too. I know when you’re having a bad day or a flare you just want to be in a dark room lying on a bed of fluffy clouds pain free but you are more than that. You are more than all the bad days, the flares, the fog. You are more than you think. You are amazing because everyday you get up no matter how much fatigued you’re suffering with or how much pain you’re in and you carry on. You don’t let it define you. For 20 years of my life I didn’t have fibromyalgia. Just because I have it now doesn’t mean I’m going to let it define my life because for 20 years I was just meg & for the rest of my life though things will change I will still be meg. I will not be meg with the problems or meg with the condition. I am & forever will be just defined by my name “meg” (unless you wanna put queen or beautiful before it then I will be that😜)