Okay, so this is not a post about how I discovered my Fibromyalgia, as that is a whole other topic, and I discussed it briefly in My Disabled Vet Story. I will probably at a later date discuss the circus I had to go through just to get a diagnosis.
No, today I’m going to talk about what living with Fibromyalgia (and my other illnesses) is like. One common description of Fibromyalgia and other chronic illnesses is the Spoon Theory. I’m not going to discuss this in terms of the Spoon theory. This is a discussion of my typical day, when I worked, with Fibromyalgia.
For sake of example, the day I’m describing below is an example of a day back when I had a regular, retail job at a Big Box store in the Electronics department, where i cover photo lab, electronics, wireless, dot-com orders, and lay away in the holidays.
The first obstacle in my day is waking up:
Regardless of the amount of sleep I’ve had the night before, the mere physical act of getting out of bed sometimes involves intricate acts of morning parkour. For those of you who don’t know what that means, check this video out:
Yeah, it’s like that. I have to sling my arms and legs out of bed in a heroic attempt to win the battle with the bed.
I’m not always successful.
After overcoming the amazing feat of getting out of bed, I now must tackle the morning bathroom ritual. Easy enough, but then I must build up the energy to walk my dogs, these two cute little puppies here:
Don’t let the cute, lazy, laying down image fool you. First thing in the morning, these two kids are really energetic and spunky. Since we live in a second floor apartment, morning walk means I can’t just send them outside to play, I have to get dressed.
Yeah, getting dressed. can’t I just wear a night-shirt? Nah, I have to wear pants to go outside.
So i get dressed, then I search for my shoes, because the parking lot I have to cross to get to the grass has a lot of broken glass. Once that chore is complete, I have to put leashes on the dogs, exit the apartment, cross the hallway to the stairs, climb down the stairs, go outside, cross the parking lot, and walk the dogs. While they sniff, use the bathroom, mark their territories, and bark at every squirrel, bird, dog, person, car, and everything that crosses their path. Oh, and Big Dog Ulmo is pulling on the leash in one direction while his sister is stopped sniffing or pottying in the other direction. Then I have to cross the parking lot again, climb back up the stairs, and reenter my apartment, where my husband is still snoring in the bedroom.
And I haven’t even been up half an hour.
Next I take off leashes, shoes, and pants, feed the dogs, and then I need to sit down and relax. That little jaunt took a lot of energy out of me, so I sit down on the computer and catch up on various social media and forums for a time. Then I piddle around doing housework for about half an hour. My anxiety is telling me that my house is filthy and that I must clean up all the (whatever is bothering me) Now! usually it is dishes, but sometimes, it is putting away clean clothes, straightening up the cluttered living room, cleaning the kitchen counters, or whatever. Even if my house is otherwise ‘clean’ I generally find some kind of clutter I need to clean.
By this time, my husband is up, and he’s using the computer, playing games, preparing for a gig, or working on breakfast.
All this time, I have a headache. Or my shoulders itch. Or I feel like my hip joints are tearing apart. Or, the fun one: every joint in my body feels like I’m on fire. That one is lovely.
But it’s time to get ready for work. Now, I have to get dressed (again) for work, find my keys, purse, phone, wallet, (which is not always in my purse) and go back downstairs, walk to the other side of the building where I have to park (the large truck we drive doesn’t fit well in most of the parking spots in our complex).
And I have to drive to work. Driving, Yeah. Driving causes me stress and anxiety, more so because I am not comfortable in big vehicles. We are borrowing one because we don’t have a car at the moment. I stress my entire ride about accidents, worry about being pulled over, stress on being late to work (I am habitually 10-15 minutes early) and hot as anything because the truck doesn’t have A/C and I’m in Texas.
Yes, I have the windows cracked, but that doesn’t matter, because it is so humid outside that opening the windows lets the damp air in.
Oh, great. Traffic jam at the red light. (wait forever) Finally, I can turn right, go to cross the MASSIVE bridge (another thing that causes me worry) and crap. More traffic at the far side of the bridge because of the boardwalk. Then it is slow, almost snail speed from the bridge to the Store where I worked.
I park the truck, go into the store, walk the LOOONG way to the back to my locker, grab my badge, clock in, and go into my department, which is in the back by the clock, so not far to go.
I have two people I’m working with at the moment: a photo lab person who is taking care of that department and our slow associate. (He’s smart, and but slow and will take 20 minutes to tell a single customer about any item). There are only twenty bazillion customers, and two giant carts full of merchandise that has to be put into the shelves. The game case is broken, so I can’t get customers the Nintendo 3DS games. Oh, and the photo machine is acting up. No, it’s just someone who doesn’t know how to operate it. Oh, and I have the Pick Up Today handheld: so if someone makes an online order, I have to drop whatever I’m doing and go pick the item for the online customer. The Wireless department has no associates in it, so I have to cover that shift today as well. management is mad that the carts aren’t worked, and accuses me of slacking off because they are not worked, but I haven’t had time to look at them because I’ve been pounced by customers from the minute I walk into the department.
I am in a crap-ton of pain. Generally, I feel like this:
But management expects me to be like this:
When I tell management I’m sick. they give me the “you don’t look sick look,” then fuss at me for being under-productive or not “snapping to do the job right away”
After two and a half hours, I get a fifteen minute break, I sit down, drink a doctor pepper, and let myself relax. I recharge a bit, and eat chips or something. I forgot to eat before coming in, and I’ve been snippish.
I get back out on the floor, and another associate has shown up, or gotten back from lunch. Good! I have someone to help cover the Wireless desk. I focus on emptying the carts for the next two hours, and I get them both empty before my late lunch. I go about an hour later than I am supposed to because Slow associate went late, putting my lunch off. I get one hour, where i eat, read my book, drink another Dr. pepper, and relax. Sometimes I nap.
After my lunch, I have three hours left in the day to clean, straighten, and organize the department. Customers are coming in in droves. It’s now about 8:30-9:00 at night, and most of the department is leaving. By 9:30, I am alone in all departments cleaning and dusting. There is some kind of work I have to do, other than customer service. Returns. more stocking, because another cart came out while I was at lunch. I don’t get my second 15 minute break because I am alone. And no one is in Fish or Fabric departments, so customers from those sections are fussing at me to get help that never comes.
Oh, and since the boardwalk is closed, and I’m by myself, now is time that customers come in like this:
Can’t leave my department, though. Oh, and people keep calling about the latest movie/game/advertised item every fifteen minutes.
Bear in mind I’m doing this with a headache, sore joints, and my anxiety is through the roof. I’m at a 6 on the pain scale.
Oh, Great! I’m off at 10, but there is no one to relieve me in the department from overnights now. O/N managers want me to stay an extra half hour so they can have the overnight crew meeting. No! I will get yelled at by day management if I stay late. I sneak out like a ninja, dropping the keys and dot-com handheld in the manager’s office, grab my stuff, clock out, then sneak out of the store.
Because as soon as I clock out, if I’m on my way to the exit, I’ll get stopped by people asking for stuff. I call my husband asking if we need anything for dinner, and usually there’s something: Beef, sour cream, bread, cheese, for dinner.
I pick out whatever it is, wait in the long line, make my purchase and leave.
I drive home, stress level rising, as cops are out trolling for DUIs. I drive extra cautiously, and make it home quickly. Stress is even higher because of people’s headlights. Bright lights hurt my eyes, and headlights are the worst.
I park a block away from home, walk home, walk up the stairs, and want to take off my clothes, eat and relax.
Once I get home, my husband FINALLY starts dinner. Never mind that i called to see what we needed, he’s sitting down, playing a game, waiting for me to START dinner. It’s 11:00 pm, and we’re getting dinner. Never mind that I have to be at work at 10 AM tomorrow.
Oh, and we need to take the dogs out again, before we START dinner. I just climbed up the stairs again. When we’re done with dinner, it’s 1 am.
I can’t sleep. I’m in too much pain, too stressed about work, too angry about some random customer encounter from the day before, and my sleeping pills would be ineffective.
And tomorrow??? I have to do it all over again.