Just over a year ago, I had ambitious but realistic plans. I was traveling, hiking and exploring the U.S. as much as I could. Then, out of the blue I began struggling with pain and fatigue Every. Single. Day. That’s not just a little headache or I’m tired. That’s full body aches like I have the flu. That’s fatigue like I haven’t slept in 48 hours. That’s everyday. That’s my constant baseline. It waxes and wanes but it never goes away, at least it doesn’t for me. My normal existing is you on a sick day. Or hungover. That’s how I’ve lived for the last year and eight months.
For reference, I’m forty years old; I am petite, and not overweight. I look perfectly healthy. Everyday it’s something new. Each day is a constant battle on an all-terrain track: full of dangers, no idea where I’m going or what I’ll hit next. I’m in an infinity roundabout of symptoms. Every obstacle is calculated to avoid risk but the outcome is never predictable no matter how hard I try. The variables don’t matter.
I’m always thinking ahead, and calculating, “How am I going to react? What’s going to flare (that’s how I describe ‘when shit hits the fan’)? How long will the transit take from X to Z location? Once I arrive at Z location, will I need to leave at any point? How much energy do I have to use when I get there?”
Everything is a calculation because there’s a bug in my database. I try to predict what I need to function. But there’s no pattern in my code anymore. Everything is unknown.
Stand up every 45 minutes to reduce pain level by 5%. Walk at least 4000 steps to reduce pain level by 10%. Rest after 20 minutes of walking. Be in bed for at least 9 hours to function at ~25% the next day.
Recharge. Rest. Self care.
While running basic errands, it hits me like a ton of bricks that turn to beads of sweat, and then I’m overheating; so hard I have to “take a break,” because buying more than just toilet paper at Target is too hard.
I can’t even eat without experiencing symptoms. I eat something; it sends me running to the bathroom. There isn’t an aspect of living that Fibromyalgia or the slew of co-existing conditions do not touch. You name it; there is an ill effect to go along with it.
Having a chronic illness really does take its toll on you. Fibromyalgia holds the power to destroy lives while lurking in the shadows. It masquerades as other diseases, so I’m put through a gamut of tests. It turns my friends and family into skeptics. It makes people think (and makes me feel) like I’m a liar, faker, and lazy. It tries to take my job, my relationships, my love and passion for life.
I have to fight every day to open my eyes and take that single step out of bed. There are many mornings when I wake up too sore and too tired to attempt what I know will be helpful for myself. As soon as I’m awake the emotions easily settle in. First, there is the guilt. The guilt for being sick, for feeling down. Then, there is the shame, because what type of person can’t pull it together enough to just get out of bed? It’s hard to explain that I probably spend 80% of my energy just trying to appear “normal.”
It is humanly impossible to explain living with pain and fatigue to someone who does not have it. I’ve resigned to just saying, “I don’t feel good, thanks for asking,” instead of trying to explain one of the myriad of ills I’m feeling at the moment.
My elevator speech usually goes a little something like this, “I have a central nervous system disorder that causes widespread chronic pain and fatigue.” I try to make it sound bad, because it is bad.
Because I want people to pay attention
I tell a friend more about why I was out “sick”. She asked, curiously, if I had figured out what made me sick. I responded playfully, “sometimes I just get sick.” But the part of me that craves support and empathy begged me to tell the truth. The thing about Fibromyalgia is that it is not like other things. The thing about Fibromyalgia is that no one knows WHAT IT IS.
The most common response is a twice-removed acknowledgment — they have an (often female) acquaintance or their “mom’s friend” had that. The conversation stops. It’s not like MS or Parkinson’s or Rheumatoid Arthritis or the flu. People know what those are. People get it. You’re sick.
Fibromyalgia is in a class of its own, and it’s different for everyone.
The other symptoms are the hardest part. They barrel through my body like it’s a pinball machine: constantly changing location and severity. Often in sharp, fast pains; so fast I can barely catch my breath before it’s moved on. Then, the pain lasts for hours at a time; for example, my legs often feel like they have 100lb weights strapped to them, weighing me down with each step. To list a few other symptoms I deal with on a daily basis:
- Chronic muscle pain, muscle spasms, or tightness.
- Chronic severe fatigue and decreased energy.
- Insomnia or waking up feeling just as tired as when I went to sleep.
- Stiffness upon waking or after staying in one position for too long.
- Difficulty remembering, concentrating, performing simple mental tasks, and dizziness.
- Abdominal pain, bloating, nausea
- Chronic tension or headaches.
- Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold.
- Numbness or tingling in the hands, legs, or feet.
- Jaw and facial tenderness.
The list goes on and on.
While they mean well, my friends and family don’t understand that, sometimes, I feel as though I am literally walking through quicksand. I can no longer go hiking, sit down and write, go to the movies, take a road trip… all things I used to love.
Get more exercise, that’s what they say. Believe me I want to! I would love nothing more then to get outside and do the things that make me happy. They have no idea how hard that is to do when every movement makes me want to flinch with pain. When walking any distance at all makes my spine feel as though it’s just going to crumble apart and disintegrate. I do what I can, I walk short distances, I do leg lifts in my chair, but it’s hard. I wish others could understand how hard.
I’m getting worn down, physically, mentally and emotionally. I’m losing hope that there are good days ahead and that relief can be found. My only escape is the sleep I get, but now the pain is twisting my dreams and I can’t even escape it there. I awake so sore that it makes me want to scream out just to move. I’m as tired when I wake up, as I was when I went to bed. Relief seems to be escaping me these days.
I am afraid to lose the independence I have managed to salvage. I’m also scared of getting worse. Will the pain become unbearable? Will I be unable to walk? The dark and obsessive thoughts provoke my depression and frequent anxieties. These can only be controlled by medications that unfortunately, I cannot take due to horrible side effects.
I feel angry and hurt for having lost control over my body and my brain, although I know that I am in no way responsible for what has happened to me. Before I was cursed with Fibromyalgia, I took more or less, many things for granted. Although my life has never been a bowl of cherries, I now take nothing for granted. Before the Fibromyalgia hit I wasn’t afraid of anything. My future now looks bleak and scary. Fear has become part of my everyday experience.
My pain level has driven me so far down that my positive outlook is suffering. There has to be something out there that will help give me my life back.