Chronic fatigue is so much more than being tired. Every single day I fight my own body. Getting out of bed takes more strength than I admit to. Usually by the time I find a position that allows me to sleep without any dislocations I get about 2-3 hours of sleep if I am lucky. Every morning when my alarm goes off my mind and my body have a fight. My brain tells me that I need to get up and function like any other normal person, while my body screams and yells at me to stay in bed. I find the strength (most days) and get ready for work. While Im in the car driving I am fighting to stay awake, my eyes tearing from the exhaustion and pain. I make it to work and sit down at my desk.
The next 8 hours I find myself shifting in my chair, feeling the pain of my tailbone and pelvis shifting. I move my shoulders and my arms, trying to pop everything in from typing all day. My vision gets blurry from the headaches I get from my neck muscles working harder to support my head. My mind gets fuzzy from the brain fog or from the lack of sleep. My jaw gets sore from the constant popping in and out while I am on the phone with customers. My body tells me to leave before my shift is over, most of the time I don't listen. Trying to keep my pride by ignoring the pain and exhaustion. I go home and get into bed. Most days I stay there until its time to sleep. Trying to regain the strength to make it through another day. I try not to think about the week I have ahead of me. Thinking of how I am going to make it through the week often leads to overwhelming feelings of hopelessness and thoughts of how long I will be able to continue doing this.
Some weeks are worse than others. This last week was a rough one. It included only working 2 of my 5 shifts. There was a few days where I was in bed from noon until I went to bed. I lay in my bed thinking about all the things I want to be doing but instead I am sleeping my life away.
The days that I have off I usually spend at appointments. Usually physical therapy, they help put me back together so I can make it through my week a little easier. After my appointments I usually am so tired and in so much pain that all I want to do is sleep. I try and fit in a few fun things, but end up paying for it for the next few days.
Everything that I do requires thought. Do I want to go out with friends? Will that make the next few days of work harder? Do I want to go to the gym? Or will I dislocate something and then going to physical therapy was all for nothing? Do I try and pick up an extra shift to make up hours? Or will that lead to me calling in again?
The feelings of guilt then kick in. I think about everyone in my life and how my condition changed not only my life but also theirs. I feel like I disappoint a lot of people. I feel like I should be able to go to school and work full time and go out and exercise, but I can't. It makes me feel like I am letting myself down and others in my life. I feel like a burden, people in my life got stuck with me being sick.
Looking forward is too hard, I get overwhelmed and sad thinking about my future, but looking back at my life is even harder. It's hard to think back when I was younger and my symptoms weren't as bad. I feel like I was a completely different person. The older and the worse I get the harder it is for me to remember who I used to be. I have found ways to grieve with losing who I was and I do try and find the positive side of having an incurable illness, but I am still human. I am strong but at times I am weak. Each day gets harder and my body grows weaker and gets more and more tired.
Be careful when you judge people, not all illnesses are visible and you never know the struggles people are going through daily. I do my best at living the life I was given. I am so grateful for so many things and I know that I have the strength to get through this.
