sábado, 3 de diciembre de 2016

To all of those who've told me Fibromyalgia doesn't exist

Dear people who've told me fibromyalgia doesn't exist for the past 4 years:

Hello there. First of all, merry christmas and a happy new year. I hope your life is doing fine, and I wish that you are enjoying the seasons' celebrations. As for me, I'm writing this after a very tough episode of fibromyalgia, and I'm in a rush to type this letter as I don't want to forget any detail of what I felt the past days. I know I'm no doctor, I'm just a simple psychology student who was her life ahead and still got a lot to learn. Still, I'm trying to talk about those topics in which I have experience, and therefore, I feel my experience is valid and true. As for that, I may not be able to explain to you what is fibromyalgia. It's new and unknown in the medical world (as far as I've heard) and there is still A LOT of research needed to be done. I've heard it's a muscular thing, a nervous system thing, a psicosomatic thing, a genetic thing... For me: It's a real thing. I've been dealing with it for the past 4 years, and the symptoms started some months after my first depressive episode. For all of those who really know me, you know I've always been lazy. But all of the sudden, at 18, I was EXHAUSTED. I had no energy, I found myself sleeping all way more than before, and even with that, keeping up with life and daily activities were way too much for me. If I went out one night, I had to spend the rest of the weekend recovering from the exhaustion that it caused. I sleep 12 hours, and a 2 1/2 hour nap. And I feel like I've been sleep deprived for 3 months. And the fatigue... Oh the fatigue! Have you ever felt tired after taking a shower? I have! You cannot imagine how much energy you need to stand up on the shower, while using your arms to apply shampoo, and wash it all of. It's an inmense effort. So when it's finally over... You have to decide what to wear and stand up and pick clothes and put them on. But you are sincerely exhausted, like you just runned 50 marathons. So you just sit on your bed, on your towel, watching at your closet and wishing you could have some tiny fairies that would pick up your clothes and dress you while you just rest there.
Clear? Okay, let's continue because we are FAR from being over.
The pain. Oh, the pain. Imagine having your skin covered in bruises. Those dark, purple bruses that come out when you trip over a desk and that hurt by just watching them? Yup, those. Now imagine you have one little kid per bruse, touching it, poking it, pressing it with a tiny but strong little finger. All day long. All over your body. In addition, imagine your body covered in needles, which randomly, are pressed into your skin, which makes you feel like you have a non existing thorn in your muscle. As every part of your body is in pain, but you cannot locate the pain, you aren't comfortable in any position. Your legs can't stand being up for a long time, but when you sit down your back hurts and when you lay down your arms hurt. Oh! I forgot, the stiffness... You wake up like if your muscles were replaced by concrete over night, and you can barely move. And it hurts. SO you have to use your magic gadgets, a cane in my case, a wheelchair in others.
Amazing, I know.
Let's continue. The cognitive part. In addition to ALL of that, you start forgetting things. You forget where you are or what you are going to do or what you just said. You have trouble concentrating and as I stated before, your memory sucks. And how could I forget to mention fibromyalgia's BFFs: Depression and anxiety. This inseparable threesome is so compenetrated, that you not only depression and anxiety come along with fibromyalgia (or vice-versa, I haven't understood that yet) but, get this, depression and anxiety MAKE fibromyalgia's symptoms worse. That's what best friends are for, right? So your body feels terrible and your mood goes to hell. It's the complete package.
And this article cannot end without mention the dry mouth, the swelling of legs and feet, the migranes, the oversensitivity to light and sound, the coo-coo body temperature, the horrible menstrual pains, restless legs syndrome, digestive problems, and that's it for now (That's all I can remember now).
Here's the fun part: Sometimes, most times to be honest, you get all of the symptoms TOGETHER! And to keep the humour going, there's no cure for it. None. You can treat it with antidepressants (which ease the pain but don't get rid of it), or simply use palliative care in order for you to be able to live your life in the most "normal" and "functional" way.
So this is it for now, dear person who told me fibromyalgia doesn't exist. Next time you judge a condition you have no idea about, try talking to the people who live with it daily. It may not be known or there might be a lot of research needed in this matter, but it does exist. I live with it, in the best way I can, and while I have awesome days in which I forget most of the symptoms, there are days in which getting out of bed is physically impossible. I'm lucky enough to be able to live my life in the most functional way I can, having to walk with a cane every now and then and cancelling plans a few times, but I know people whose life was been taken away from fibromyalgia. So please, next time you're going to say it doesn't exist, think about having all of these symptoms for ONLY one day. And then, you can express yourself.
Thank you!

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