Monday, April 21, 2014

A Day in the Life.

Grab a snack kids, this one is a little long.
The doctors tell me fibromyalgia symptoms are the worst in winter.
Apparently, I'm a freak because summers kill me.
Today got to 80 degrees and I am dreading a full summer of this.
The pain is the same as it is all year but the neurological symptoms get so much worse. 
I want to take you through how a warm day feels for me.

Imagine this:
You wake up in pain and immediately feel nauseous. You drag yourself out of bed and start to get ready. After brushing your teeth and splashing water on your face you guide yourself back to your bedroom keeping your hands on the walls to remain standing and you lower yourself to the floor. After a few minutes, you stand up and put some makeup on and get dressed. You still feel like you're going to faint, but you know its not going away, so there is no reason to stay on the floor. Moving even the smallest part of your body becomes infinitely more difficult as every part of you has become extremely weak. Once you get half-dressed (clothes are so uncomfortable you only get dressed from waist up until you need to go to school/work) you pick up your dog and shakily make your way down the stairs. You may need to take a quick rest. Now you take the dog out, losing about 50% of your vision as you do. The heat causes you to have black dots all throughout your vision, making sight possible, but difficult, as you must move more to see around the ever growing and changing dots. You feel so crappy you speak roughly to your dog, and whomever else may be around. You immediately feel guilty for this, as you do not mean what you say

You have only been up for a half hour.

This continues throughout the day. Your body is still incredibly sore as if you did a 20 hour workout the day before. On top of this, sharp stabbing pains break in throughout the day to accompany the soreness. For instance, you may be leaving your house trying to lock the door behind you when an invisible knife enters your knee. This could cause you to drop your keys as you try to gain composure.
(this causes your dog to bark which you worry annoys the neighbors so you feel stressed which means more pain)

You now need to walk to class and ignore the ever deepening knife in your knee. Soon, it will move to your shoulder, so there is little reason to wait for it to pass as it is never gone for long. 
Once you arrive to your destination you must immediately go to the bathroom to run your wrists under cold water. This allows some of your vision to be regained, so you're at about 80%. You need to get to class now, as you can't stay standing for much longer. 
In class, you chair will float, the room will move, the lights will get in your way, but you still need to pay attention. You need to take notes. 
The day continues in this fashion, getting progressively worse as you go on. 

It is very hard to listen to your classmates talk about the beautiful weather and all that they plan to do.
I would love to be able to go on a hike or just sit outside, but it is not possible.
I do not want sympathy.
I want to be understood.
I am not as lazy as I seem, I am working my butt off to do what is necessary. 
I do want to spend time with you, I just can't do what you want to do.
I don't mean to be rude, you just caught me at a bad moment.

This is not in my head. I wouldn't make up something that takes me away from everything I enjoy.
I want to kayak, walk my dogs on a warm day, become a teacher.
I don't get to and that is hard enough, I don't need to be called a liar.

Just understand that I may need to hold myself up with your arm.
Just let it happen, I need your support.
In more ways than one. 



  1. I'm so sorry you're going through this! Know that we're all there for you at the High Heels and Training Wheels community.

    1. Thank you so much! I really appreciate you and others writing about your experiences. It is definitely helping me.

  2. I tried to comment on this before, but I had issues because I was on my phone. Sending you lots of love! xx

    1. Thank you so much :)
      I am seriously loving your blog!