The fight with fibromyalgia is that every day is something new. My diary is a constant battle on an all-terrain track; full of dangers, no idea where I’m going or what I’ll hit next. They are in an endless rotunda of symptoms.
Every obstacle is calculated to avoid the risk, but the result is never predictable, no matter how I try. Variables do not count.
There are many symptoms of fibromyalgia, including:
- chronic muscle pain, muscle spasms or a sense of oppression
- severe chronic fatigue and energy decrease
- insomnia or waking up feeling as tired as when going to sleep
- stiffness upon awakening or after a stay in one position for too long
- difficulty remembering, concentrating, and performing simple mental activities (“fibroidea fog”)
- abdominal pain, swelling, nausea and constipation without gastrointestinal problems of information
- chronic tension or migraine
- sensitivity to one or more of the following: smells, noise, lights, drugs, certain foods and cold
anxiety and depression - Numbness or tingling in the face, arms, hands, legs or feet
- A feeling of swelling (without actual swelling) in the hands and feet
- jaw and facial tenderness
Costochondritis, inflammation of the cartilage that connects a rib to the breastbone
is progressing. They are even better. As allodynia, greater sensitivity to touch, resulting in pain things that would normally not cause discomfort, such as wearing clothes.
For me, I struggle with pain and tiredness. Single. Day. It’s not just a bit of a headache or I’m tired. This is pain for the whole body as if I had the flu. This is as hard as if I had not slept in 48 hours. This is every day This is my constant baseline. My normal existence you are on a sick day. Or hangover. This is the way I live.
For reference, I am 27 years old, 5’1 “and 120 pounds. I look healthy
But the other symptoms are the hardest part. They pass through my body as if they were a pinball machine; I can barely catch my breath before. Regular duration for hours at a time; where my legs feel like they have 100 pounds weights tied to them.
Usually when I run my basic errands, I’m overheating so hard I have to “take a break” because I’m buying more toilet paper in Target is too hard. Eight hours of work in my full-time job seem to run in marathon.
The list could continue indefinitely. I resigned myself to say, “I do not feel well, thank you for asking”, instead of trying to explain one of the countless diseases I feel at this moment.
Speaking of moments, it’s all I can think of. Just in this moment of pain I exist, in bed trying to distract me from “him” (pain). Tomorrow, in the moments before, during and after my trip in public.
In three weeks, at the time of the 30-hour journey, I embark. How will I react? What will you call (this is how we describe “when sh * t hits the fan”)? How long will the transit from X to Z last? Once I get to Z’s place, will I have to leave at any time? How much energy do I have to use in the eight hours I should work?
Get up every 45 minutes to reduce the pain level by five percent. Walk at least 4,000 steps to reduce the pain level by 10 percent. Rest after 20 minutes of walking. Be in bed for at least nine hours to work at around 75 percent the next day.
Everything is a calculation because there is an error in my database.
There is no longer any reason in my code.
Everything is unknown
At work, I think I should tell a colleague more about why he was “sick” yesterday. He asked curiously if he had discovered what made me sick. I answered jokingly: “Sometimes I get sick.” But the part of me that craves support and empathy has implored me to tell the truth. The thing about fibromyalgia is that it’s not like other things. The thing about fibromyalgia is that nobody knows what it is.
The most common answer is a confirmation canceled twice – that they have knowledge (often feminine) or their “mother friend”. The conversation stops. It’s not like that damned influence. People know what it is. People understand it. You’re sick
Fibromyalgia is a class in its own right, and it is different for everyone.
My elevator speech is usually a bit like this: “I have a central nervous system disorder that causes widespread chronic pain and fatigue.” I try to make it look bad, because it’s bad.
Because I want people to pay attention.
I want people to know about fibromyalgia and what it does; the power that must destroy lives while hiding in the shadows. It disguises itself from other diseases, so we submit a series of tests that our insurance will not cover. This turns my friends and family into skeptics. It makes you think (and make me feel) as if I were a liar, a fake and lazy person. Try to take my job, my relationships, my love and my passion for life.
