For me to write a post about my woes with fibromyalgia, I first have to explain what it is. So I’m going to try my best to put all the sciency stuff in layman’s terms, and then I’m going to whine and complain tell my story. I’m going to explain how it is for me and how I deal on a day to day basis.
Fibromyalgia is classified as a chronic pain condition that affects the entire body, but it really is so much more than that. For those of you who don’t really understand chronic pain, I suggest reading the spoon theory - it’ll come in super handy later when I refer to spoons.
Chronic pain in itself is hard to deal with but the absolute most frustrating thing about it is the reaction from other people. There is this stigma in society that if you don’t look sick, if you don’t look like you’re in excruciating pain, then you possibly can’t be. You can tell people, “Oh god, my legs hurt so bad today” and they’ll automatically respond with “I know how that feels.” when the truth is, they can’t possibly. With fibromyalgia, your body doesn’t just hurt, it aches. All over. And there is nothing that can make it better.
I mentioned before that fibromyalgia was more than just pain. Included in its extensive list of symptoms is severe fatigue, insomnia, anxiety, depression, memory loss, headaches, migraines, weather sensitivity, etcetera etcetera.
The process of diagnosing fibromyalgia is even painful. It cannot be diagnosed by doing a simple blood test like many other similar diseases (ie. Lupus). To be diagnosed you have to see a specialist and they have to rule out absolutely everything. My doctor is even double checking to make sure I don’t have a Vitamin D Deficiency.This is what happens when you’re unlucky enough to have a disease that has many other symptoms that disguise it as another.
The first encounter I had with fibromyalgia was years ago. I don’t even remember how old I was. I just remember waking up really weak and really tired. I went to the doctor (because this lasted a couple days) and he told me to grip his finger as hard as I could. If you take a pencil or a marker and you just wrap your hand around it - don’t make a fist - that’s basically what my grip was. Then a couple days later it went away as quick as it came on. I looked up everything back then trying to figure out what it could’ve been when I came across a webmd article on fibromyalgia and it clicked. Since I didn’t have insurance back then I couldn’t get officially diagnosed. In fact, I didn’t get an official diagnosis until last year (thanks Obama!). Looking back, I realize those days of saying “It depends on how I feel” before making plans makes sense.
I describe my bout as “good days” and “bad days.” On good days, yes I still have my problems - I still hurt, I’m still tired - but I can cope. I might even be lucky enough to have spoons leftover. My bad days are so much worse. On bad days I overuse my spoons. One day I had tripped and fell. After that it felt like my tumble scattered all my spoons for the day so I was left borrowing from the next day. I’m lucky enough (because yes, fibromyalgia is different for everybody) to where every day isn’t like that and I have more good days than I have bad ones.
Being around people who don’t understand is the hardest. I once told my dad that, for me, fibromyalgia is that ache when you’re sick with a cold but it’s five times worse and it doesn’t go away. I still don’t think he understands, especially on days when I’m so tired I can’t stay awake for 5 minutes, but he’s one of those “but you don’t look sick” people. I can say “I’m so tired” or “my body hurts” and he’ll respond with “me too” and I get aggravated and I have to keep myself from yelling: BUT YOU HAVE A REASON.
It takes so much effort just going out of the house, even on my good days. My bad days I just want to lay in bed with Hulu or Netflix and tune the world out. I recently went out over the weekend with family (we saw The Zombies in Beverly Hills, it was awesome) and when we got home I felt like I needed to sleep for two days straight to to earn some spoons back.
I do my best not to complain everyday, and that’s why I think people don’t understand just how bad it is. I’m better off than a lot of my fellow butterflies but I still suffer. I still wake up in the morning wondering how I’m going to get through the day, but then I put my brave face on, grab my spoons and get through it.
If you want to look into fibromyalgia further, I highly suggest you spend your time at this website.
