My Disability
My Disability
this is my chronic illness
After 20 years of chronic pain and illnesses, 12 doctors, 6 physical and occupational therapists, 9 misdiagnoses, my fight has just begun. My fight to heal my body, mind, and soul from steroid packs, food diets, therapy, and abusive treatments that left me with nightmares and flashbacks.
My whole life I have struggled with chronic, unknown, and undiagnosed illnesses. A small pain in my knee quickly became wide spread pain throughout my entire body, leaving me bound to my bed and dependent on a wheelchair. Me, the girl who wanted to build a dance career, was now living a dancer's worst nightmare.
While my illness was eating me on the inside, no one knew my struggle except my parents and sister. It is incredibly difficult to have a chronic illness, but having an invisible illness is uniquely challenging.
People didn't believe that I was in pain; doctors looked at me and shrugged. I understand that most people think if you cannot see the illness, it must not be real. But hopefully, by talking more about my invisible disability, people can learn about and become familiar with disabilities altogether. Just because I may look fine, healthy, or ”normal”, doesn't mean I'm not suffering.
Currently, my diagnosis is fibromyalgia, sleep apnea, raynauds, chronic fatigue, PTSD, depression and anxiety. I'll share a little about each with the goal being to simply help others understand what my personal disability looks like.
Fibromyalgia causes chronic widespread pain throughout my body. Resulting in migraines, muscle spasms, nerve pain, and muscle stiffness. There are over 20 symptoms of fibromyalgia but I struggle with these specific symptoms on a daily basis.
Sleep apnea causes my wind pipe to close when I sleep. There are over 16 symptoms of sleep apnea. My specific symptoms on a daily basis are excessive daytime sleepiness and fatigue. Untreated sleep apnea cause me to have seizure-like episode.
Raynauds is poor circulation to the hands and feet. When my Raynauds flares, my hands and feet turn colors; sometimes white, yellow, or purple. This can be very painful.
Chronic fatigue, to many people's surprise, is very different than just being tired. While someone who is tired may just feel sleepy or like they have done a lot of activity, chronic fatigue prevents me from having any energy to begin with. I run out of energy very quickly and I have to rest in between activities as well as take lots of breaks throughout the day. While a healthy person may be tired after an eight hour day working retail, my body would collapse to the floor after the second hour of forcing my body to stand for that long. This is beyond frustrating when I have things like housework, errands, or paintings I want to get done. There's no such thing as a ”to do” list. My list is more like, ”when I have energy and am not in too much pain, I can set a goal to do this.” I am constantly reminding myself that there is always tomorrow and living in the present is the best place to be.
My anxiety and PTSD go hand in hand. Thankfully, I have found a medication that helps me stay in a good head space. My faith, art, and family, are indispensable when it comes to my mental health.
Unfortunately, there are no cures for my illnesses yet. And for now, all I can do is manage my symptoms as best I can while trying to live a ”normal” life. Because of my illnesses or disabilities, I'm not able to work, or do a lot of activities in one day. I can have friends, go places, and date. I will just need to rest in-between activities and if a migraine comes, I’ll need rest, and lots of icepacks. I take each day as it comes and focus on what I can do as well as be gentle with myself while I figure out how to live with my disabilities.
Fibromyalgia
This picture is what my everyday pain feels like to me. To me, this is a good pain day. On good days, I would go out shopping, hangout with friends, watch a movie or create art, work, run errands etc. This is the kind of pain that I can ignore for the most part. This is also what my pain would look like when I’m on the right medications, eating a good diet, and if the weather is stable. All of which can affect my pain level. On a pain scale of 1-10 (1 being no pain and 10 being excruciating), my normal pain is 4-6, but I can function up to an 8.
Fibromyalgia
If you could see what fibromyalgia feels like on a bad day, this would be it. You can see in this picture, the pain is more wide spread throughout the body. I will need to lay down for most of the day with ice packs. I might do stretches but I will need to move slowly and carefully. On these days, I might try to work on my art or blog. I will need a long shower and a good tv show. Somedays I feel like this and I’ll just push through the pain anyway. On the pain scale I would rate this pain an, 8-10. When I reach a 10 on the pain scale, the goal is to fall asleep and hope the pain will be better the next day.
