I had just turned sixteen when I was diagnosed with Myalgic Encephalomyelitis (ME). At that point in my life I was really happy with how things were going. I had great friends, school was going well, I loved my dance classes and competing with my dance team, I had just gotten a job at a place I love and I had my learner’s license for driving; everything was good.
It seemed almost overnight that I got this disease. One day at the end of September 2012 I noticed that I was suddenly in this sort of brain fog and it felt like I was looking at the world through a glass window. I couldn’t focus on anything and my vision seemed off. I also noticed that I was having trouble staying awake when listening to someone talk. I figured that I would sleep it off that night and be fine in the morning, but it didn’t go away. Every night for two weeks I prayed that I would wake up feeling normal again, but I never did.
Going to the various doctor’s appointments in the early days of my illness and having the doctors say they weren’t sure what was happening was very scary. I continued to work and dance and go to school for a while but things slowly fell apart. My best friends didn’t believe that my illness was serious and would make jokes out of it or say that I was just saying this to receive attention. Eventually they all stopped talking to me and acted like I was invisible. Shortly after that I had to quit my job and my dancing as I no longer had the energy or stamina to make through a shift or a class. This was very upsetting for me. By November 2013, in my grade 12 year, I was so lacking of energy that I had to leave school and continue my schooling from home. That is when I realized just how serious this was getting.
My health continued to decline during my grade 12 year and by late summer it was apparent that I had to make another difficult decision to cancel my plans to go to university in the fall. It was tough to see my former schoolmates move on to this next phase of their lives while I remained at home.
These days I am very home-bound, some days finding it hard to even get out of bed. I occasionally have good days where I can go out to meet a friend for lunch, or go to my doctor appointments but not much more than that. When I do go out I sometimes will have such bad anxiety that it’s hard to enjoy the time I’m spending away from the house.
I try to enjoy the little things such as watching my favourite TV shows, sitting outside on nice days or playing with my dogs but it is hard to always be positive when things seem to be getting worse. There are so many questions I wish I could have answers to but probably will never get. A common question is “Why me? What did I do to deserve this?” and I stress over this often. Lately I have found myself wondering if this is what the rest of my life is going to look like. If so, my future appears to be very bleak. It seems that it will be impossible to go to university, to have a job or to even to find a partner or good friends and to have my own family.
Many people tell me to just stick through it, keep smiling and that it will get better one day, or will even say something like “Hey, at least you don’t have something bad like cancer”. When people make remarks such as these it is quite irritating. It’s hard waking up every day feeling like you got hit by a train and realizing that you are not getting better. Because of this, depression really is inevitable. The depression isn’t what causes me to feel so tired, it’s a side effect of having this poor quality life. Feeling like your body is dying some days is a very real, scary feeling.
The symptoms that are the worst for me are the extreme fatigue, inability to sleep, body aches and the persistent brain fog and it drives me insane never getting a break from them. For that reason, when someone tells me to that “it can’t be that bad” or to “suck it up” I feel like the only energy that I have would be well used in throwing a punch at said person!
I would very much like to turn things around for myself, but after having tried many things to no apparent avail it is hard to remain hopeful; nonetheless I want to keep trying. I have found that talking and sharing a little laugh with other people who are in the same position as I am can be helpful in relieving frustration and stress.
With ME I have my “good” days and my “bad days”, even though my “good” days are probably an awful day for a normal healthy person. On the bad days it’s hard to imagine that you can get better, but the good days I have give me hope that maybe one day my health will be significantly improved and I will be able to get most of my life back.
originally posted October 2014