I have been a horrible blogger. I know it. I will admit that I have started writing a number of blog posts and either lost my train of thought or suddenly had exhaustion hit me in the face with a shovel. Some of those posts I have deleted, others are sitting as drafts waiting to be finished. Other times I don’t feel like I have a lot to say.
We are almost midway through Fibromalgia Awareness Month and although today is almost over, it’s World Fibromyalgia Day. No better day than to resume blogging about living with fibro.
I was recently trying to explain to a family member about the amount of pain that I experience. There is always pain. It’s just a matter of how much. Sometimes it’s just an annoying ache. During the worst weather, for example the low pressure that comes with hurricane season storms, both the fibro flares and the arthritis. These times it actually feels like I have been by a car – or at least what I would imagine being hit by a car would feel like. It feels like every bone in my body has been broken and I have wished for death where the pain would stop. This family member was shocked that I would say such a thing, but it’s the truth. I don’t know why someone would say that I was lying about that. This same family member isn’t exactly empathetic and has put off picking up my medications because they “are tired and want to go home”. An extra stop while running errands, an extra 10 minutes was asking too much and because of that, they have let me suffer with this kind of extreme pain because of their own selfishness.
I understand why chronic pain patients are twice as likely to commit suicide. Pain changes you. When people say that, they are usually talking about emotional pain. However, physical pain changes you just as much. That stereotype of old cranky people, I joke that these people are cranky because they are in pain from arthritis and all the other things that come with ageing. However, pain does make you cranky, and bitchy and it lowers your patience making you want to punch people in the face for talking to you. It makes you feel guilty and burden when you can’t do something for yourself and have to ask for help. Pain isolates you because you can’t do things. It also takes a horrible toll on the body. The human body isn’t designed to be in pain 24/7/365.
My best friend visited recently from Down Under and we spent two days visiting DC and another two days walking around the historical area that I live in (it’s an awesome place for Pokemon Go players) and at one point he said to me “I am surprised you are up and moving.” I confessed that I didn’t get out of bed until I took my pain meds and the kicked in. I really over did it over those days, and at the end of every day when I crawled into bed, I couldn’t move because of the pain. Between everything we did and the temperamental weather of spring I have been going through a horrible fibro flare that just won’t let up. At least I haven’t broken out in shingles. I spent 2 and a half years with a case of shingles because of my fibromyalgia.
I like to joke that I don’t need an awareness month for fibro, that I am very aware of it. In fact, I hate awareness months because there are so many people out there that jump on them because they are trendy. It’s like when someone asks about the autism awareness ribbon tattooed on my hand and I tell them that I have two children on the spectrum and I get something to the effect of, “My best friends sisters husbands brothers wives cousin has a child with that so I know all about it.”
It just really annoys the life out of me that as a society we only talk about mental illness or lupus or fibro or breast cancer or autism during a designated month of the year and then we don’t mention it again. Those of us that live with some chronic illness or disability, if we talk about it any other time we are accused of being whiny or attention seekers or that we talk about our illness/disability too much and let it run our lives or whatever. People don’t want to hear about it. This includes our family and friends.
The worst thing about fibromyalgia isn’t the pain or the brain fog or any of the other things that go with it. It’s that there are people out there, including doctors, and there are a lot of them, that believe fibromyalgia isn’t real. The pain is all in our heads or we are exaggerating and we hear things like, “Everyone gets tired” I came across a website not long ago that is dedicated to “proving” that fibro is “fake” and a “dangerous fad”.
Seriously? No one wants to be sick. Those people who want to be sick make up between .2 and 1% of the population and have a psychiatric illness called Munchausen Syndrome. But what about hypochondriacs? Those people are worried that they are sick. Big difference. Saying that a fibro diagnosis is doctor code for “I don’t know what is wrong with you” is is crap. Telling someone with fibro this is a good way to make them feel worse about their diagnosis and makes them question if the pain isn’t all really in their heads.
It’s the mindset of people like this why we need awareness months. It’s why people who suffer with fibromyalgia choose to spend a month educating whoever will listen about their invisible illness that has no cure. We are getting closer to finding out what causes fibro, but we still don’t know. We know a lot about the human body, but there is still a lot we don’t know. Until medical science figures out the cause, we can’t cure it, we can only half-ass treat it….and we have to convince people that our pain is real.