Fibromyalgia and My Life: Unmedicated.

Dear Classic Mom Diary:

Lately it has come to my attention that some people are a little concerned about my choice to medicate for my Fibromyalgia during pregnancy. While I'm not comfortable sharing how I medicate publicly, for those of you who know, I want you to have a reason, and for anyone else whose otherwise curious about any of this, I want you to know. 

I live with a condition called Fibromyalgia, Fetal Alcohol Effects (a lesser case of the well-known "syndrome" that develops in utero) as well as an undiagnosed stomach condition that is loosely controlled with medicines. On top, I also have anxiety, depression, and I show symptoms of PTSD on a fairly regular basis. The reason why I choose to share what my daily life is like, is to hopefully help others understand a few things. One of those being why I medicate, but the rest hopefully being explanations as to why I may or may not do things certain ways, or why some things I don't really do at all. It helps to bear in mind that these are chronic illnesses that I deal with daily, yep - every single day. I will live with these illnesses until I die, and for that I have prepared myself. But it helps when others understand that saying things such as "suck it up" or "just get over it" are not valid, because they are not possible for me. I am not saying this from a wimpy I-don't-want-to-do-it stance. I am saying this from the position where I've tried to do that (suck it up and just get over it) and it absolutely does not work, it has made everything a lot worse.

So, being diagnosed with Fibromyalgia is basically being told you have to somewhat baby yourself for the rest of your life. I'm sure this is a good thing for my anxiety and depression, but it sometimes contributes to it. How many 19 year old people are going to feel happy or proud that they are sometimes incapable of walking, using fine motor functions, or even speaking? How many people in general are going to be able to suffer with symptoms as debilitating and these, and not face further anxiety and depression? Few to none, I'm sure. Fibromyalgia has taken a lot of my life away from me.

It is suspected that as a child, my Fibro existed as a lesser case of sensory impairment, as I was always very sensitive to touch, to the point that someone grabbing my arm in gym class could turn me to a teary eyed wreck, feeling like my arm had been broken. As I grew older, these pains became a lot worse, but I also became a lot better at being able to explain them. I have also been a lot better at explaining the feeling where my brain all but "shuts down" and I lose the ability to communicate and fully understand my thoughts (they're there and I think them, but cannot understand what the thought means, even when it's as simple as producing a response to a yes or no question.) My doctor has told me this is the likely effect of my Fetal Alcohol Effect (FAE), as children and people living with these symptoms tend to get a "brain overload" and it essentially just stops. It causes my anxiety to get really high and can send me to tears if I'm trying too hard to communicate, because the harder I try the less I am capable of it. 

During the day, Fibromyalgia gives me the sensation of many crushing bones at different points. There is a picture floating around the internet that says "this is what Fibromyalgia feels like" and it looks like the person got struck by lightening and there are lightening-bolt-shaped bruises all over their entire body. There isn't anything more accurate than that to describe how your skin and muscles feel 24/7, across your entire body. Pain medication makes me disconnected from this - I feel the pain but the "ouch" factor is gone - imagine those tooth numbing agents at the dentist - with enough force the pressure can hurt, and later after the numbing disappears you may feel leftover pains. Enough force, though, is someone squeezing you in a hug, or bumping you too hard in a store aisle. It is not that hard to break through the pain pills threshold and once you feel the pain a bit, it returns to full force at an accelerated rate. 

When I don't have medication, however, those bruises are intensified. They are more like burns. Sometimes it literally feels like my skin is on fire, and when people touch me, their skin is like a torch. The pressure of laying in bed can worsen it, as can the pressure of standing, sitting, walking, or almost anything else. Hot showers help quite a bit, but the relief is short lived. The bottom of my feet feel like they have been beaten with hammers, so when I stand it is even worse than the feeling of standing on a cement floor for a 10 hour shift (I know - I've been there, done that.) It is actually crippling, and has driven me to tears on more than one occasion. When I walk, it takes me about 2-3 minutes to start getting severe pain in my hips, as though someone has plunged their fingers deep into the joint and then started yanking my hip out from my body. After about 4-5 minutes they get very hot and almost numb. It takes about 10 minutes for them to feel numb and weak, which means when I get home and I can feel them again, I will suffer big time. In fact without medication, I would probably walk with an extremely crippled limp in both legs from the amount of pain. I cry a lot when I don't have medicine for the pain, these days, as it has gotten so bad. Without it, I cannot move my arms out more than about 4-5 inches from my body, which means I have a hard time changing my shirts by myself, I either end up wearing them for an extra day while I sit at home embarrassed that I cant dress and undress myself, or end up crying in sheer pain from forcing my arms into a position that literally feels like they're being broken off of me. Simple tasks such as typing on a computer or on my phone are nearly impossible because my fingers don't move the way I want them to so they often miss the buttons. Or sometimes they don't and they hit too many, and that becomes "thausht". Which is funny when its one word, but a piss off when its the entire message. And no, auto correct has no idea what I'm trying to say at that point, either. When speaking out loud, my jaw often gets stiff, which causes me to have a hard time talking because I can't open it. I get a funny voice because I talk through clenched teeth like I'm scared or angry, but only because I can't find the ability to open my mouth. This also leads to severe tension headaches that on their own can stop me from walking or contributing to life very much.

Obviously, living such a debilitating life can lead to huge depression and anxiety. I also get flashbacks to various terrible times in my life where I experienced abuse both physically and mentally, as well as to other points that I will not mention here. These flashbacks can lead to intense episodes of fear, anger, sadness, hurt, betrayal, or sometimes they can lead straight into one of the things where I can't speak, so I go from an intense and terrifying flashback, to being incapable of communicating and thinking, and full of even more anxiety and fear. 

So, trust me when I say I know medicating during pregnancy is not ALWAYS the best scenario, and when avoidable - it should be avoided at all costs. But I hope this leads you to understand that without any level of relief, I would literally not be able to live a life beyond being curled up in bed crying on and off. And for a few months whenever I wasn't working that is exactly what I did was lay in bed and cry. And then try to look strong and O.K. for when my boyfriend was home so he wouldn't have to feel like I was a burden. Now that I am pregnant, I am using a non-conventional form of medicine, and due to morals and beliefs, many people are questioning this decision. I want it to be known that this has been explained and talked to in full with my doctor, and I am using it as is deemed O.K., and am fully aware of any and all consequences that may occur. The route of medicine I have chosen has the least affects on the baby, while still enabling me to live a semi-regular life. At most, we will deal with a slower learner, and potentially a smaller birth weight. But even this is not being considered a big risk for our child by our doctor, and so we have agreed that it is the best option. 

Thank you for your time, and for trying to understand life from my shoes, and trying to understand that we are doing our absolute best to make the best possible educated decisions regarding our family, as we want nothing but the best for our baby and our family.

Cheers

Julie Maye xoxox