How I see fibromyalgia

Hi there. My name is Celeste, I’m a 20-something, and I’ve been diagnosed with Fibromyalgia.

Here’s my story:

I grew up with my father telling me that there were certain things in this world that didn’t really exist:, Homeopathic Medicine, good Rolling Stones music, Fibromyalgia, and of course, the perfect pie crust.

I remember that he told me that fibromyalgia was a mental illness. The people who believed that they had fibromyalgia were faking it and using a made-up affliction because they led sad little lives. Essentially, it was similar to what I grew up with: People faking illnesses to get money from the government. I knew that this was a possibility and also a truth in many people’s lives, so I didn’t question it.

I firmly believed that people with fibromyalgia were mentally unstable individuals that just wanted attention.

Boy, oh boy – was I ever wrong.

The pain came gradually and I blamed it on the fact that I’m taller than the average bear. Back pain, joint pain, and neck pain were all there first. Essentially, it wasn’t until I was in a car accident that the pain started to actually prevent me from being able to function.

Over the years, I saw chiropractors, doctors, and even a specialist that worked in creating exercise programmes for people with disabilities. He was the first one ever to actually put me through the Fibro test. For those who don’t know what that is, I have included a link here. If you don’t want to look it up, essentially, there are points on the body that usually wouldn’t be painful, but on a person with fibromyalgia, they’re excruciating.

I have never felt so much pain in my life.

I cried and begged the doctor not to do it again. Alas, I actually had all the points on me. After my physical with him, he offered me a discounted rate because he found that my pain was incredibly unique even if I did have fibromyalgia, and he wanted to study it.

I still couldn’t afford the discounted rate. -_-;;

I was finally diagnosed after months of being tested by my doctor. Fortunately, she was one of the few doctors that believe that Fibromyalgia is an actual thing. In this whole process, I found out that I have a hernia and also tension headaches. How great!

So now I have fibromyalgia. Exercise helps, but it will get much worse before it gets better.

To explain how my days [used to] go:

I wake up in the morning and I feel like I’ve been hit by a truck. My whole body is aching and I usually have a rough night sleeping because I’ll wake up during the night with half of my body all tingly because it fell asleep.

I usually have a headache as well, but these have been getting better. There is a dull ache throughout my body and the stiffness doesn’t go away until about 11am. By this time, I’ve been at work for five hours and my shift is almost over.

The tension in my shoulders causes constant headaches and if I don’t get up and move around every 25 minutes, my whole body seizes up. I’m a clumsy person, so I hit my body against furniture a lot, which is obviously painful beyond anything.

I usually nap right after work because I can’t keep my eyes open. Dealing with this pain all day and being expected to be a working professional is a difficult thing to do.

I can no longer enjoy DDR-ing or riding my bike. I even have difficulties doing the dishes because standing at the angle that it requires to wash the dishes is incredibly painful to me.

Hot baths, tea, and comforting heat pads are all that help.

They really do nothing in the long run.

To explain how my days usually go [now]:

It’s no secret that my pain has gotten much worse over the course of the last year. I was fired from my one job because of my Fibro and I had to quit another one because it was actually killing me.

So now to explain:

I wake up in the morning after not being able to sleep from the night before. Some nights I fall asleep at 6am, but I’ve been trying to use natural aids to help me sleep. When I do feel tired, my entire body burns but is especially horrible around my knees. This usually prevents me from sleeping at all.

I wake up and I’m in a haze. I usually beg Gabriel to let me sleep because it’s another 30 minutes without having to deal with my pain if my mind doesn’t wake up too much. I can’t eat too many things because most of what I eat gives me terrible headaches. I’ve had to cut out gluten completely due to the headaches.

I constantly have headaches that I can’t get rid of no matter how much medication I take. My jaw is constantly throbbing with no relief in sight. I can quell the pain in my hips for an hour or so if I manage to take a really hot bath. My wrists are almost dead, my knees are shot, and my neck feels so tight that it’s reminiscent of a taut wire: immovable.

I make it through my day not leaving the house usually. When I do, I have to mentally prepare myself the day before and I can’t venture far without enough money on me to be able to take a cab home if my legs give out. The next day after I come back usually involved me being in bed trying to recuperate.

I’m trying to live my life as best as I can but it’s so hard not being able to do the most basic things.

Thankfully, I have the love of my life, Gabriel, who is more than willing to help me through this.

Some days I can’t see the light at the end of the tunnel because it never ends.

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There is no known cure for fibromyalgia. 

So, all that I ask is that you don’t sow ignorance on subjects like fibromyalgia. Do you own research. Hell, ask someone who is afflicted with with the illness that you’re questioning. We’re more than willing to speak with you about it, and we’re more than happy to have another understanding person on our side.

To make it a little easier to talk about, I’ve even given my pain a name. This way, friends can ask how my lamp is today without having everyone throw together an impromptu pity party.

Thanks for taking the time!

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