Pain, Pain, Go Away

When people hear the word, "pain," they typically think of getting an injury or being sick. But when you have chronic pain, it means something far different. There is no broken bone to heal, no scrapes to scab up, no visible injury. Just pain. Aches. Soreness. Stabs. Charlie horses. Knots pinching nerves. Swelling. Stiffness. For seemingly no reason, and the various treatment methods available only work sometimes.

Think about it. You pull your hamstring. That takes weeks to heal on its own. The pain is constant the entire time. The pain pills you were given only make you loopy and do nothing for the pain. Ibuprofen and other over-the-counter (OTC) methods aren't working. So you suffer. You limp around feeling like you wish someone would cut your leg off every time you move. You can't bend. You can't lift. By the time your leg is healed, you have it set in your mind that you will do everything in your power to NEVER pull that muscle again.

Except with fibromyalgia, there's no injury to wait on healing. It just hurts. Constantly. It could be your back one day, your hands another, your joints another. It all depends on how your fibromyalgia affects you. But it's constant, and it's draining. It is the reason chronic fatigue often coincides with chronic pain. Because how can you sleep comfortably when your body hurts? What's comfortable upon falling asleep could trigger pain later in the night, causing most nights to result in tossing and turning and loss of sleep. In the fibro world, we call this "painsomnia."

Let me make this a little more personal. Here's how today has gone for me:

First, let's start with the weather. It's unseasonably hot here in Ohio, so hot that the largest district in the state canceled school today because of the heat. Many of their buildings lack air conditioning and it isn't safe for the kids to be there. That's how hot it is. Indexes into the 100s, in September. Plus high humidity, high dew point, high UV index (wear sunscreen!) and moderate air quality. I mention these things because they are important, the weather plays a huge role in how I feel on a daily basis.

So I woke up today extremely stiff and sore. The first thing I notice is my back, every day. I tweaked my sciatic nerve about 2 weeks ago, and while the worst of it seems to have passed, it still bothers me. Sitting up upon waking is hard, I'm so stiff that it takes a decent effort to get upright. Then standing. In general, when I wake up, it takes me about an hour to be able to stand up straight and walk right. Today, I haven't reached that point yet. Yes, I can move around, but when I get up, I am hunched over a bit for about 10 steps before I can be upright. Stiffness is typically accompanied by some kind of pain, whether it be aching, stabbing or soreness. Today it's a combination.

The next thing I noticed was swelling. My hands are a big culprit of my daily woes, they've been a source of annoyance for many years, actually, and now they are the bane of my existence. Today, though, it wasn't just my hands. Without looking in the mirror, I could tell my face was swollen and my eyes were more puffy than normal. I looked at my ankles, which verge on non-existence by the end of every day anyway, and could see they were swollen too.

The whole process only took about 5 minutes, but I knew that it was going to be a day where I alternated pain management treatments.

I pulled myself out of bed, grabbed some coffee and watched the news. Jaxson getting out of bed is what got me up, but he fell back to sleep on the couch and didn't wake up until 8:30. Jeffrey didn't get up until 8. These boys are usually up and bouncing by 6:30! So I had a little bit of time to sit on the couch and try to wake up my body.

Once breakfast starts, though, it's non-stop the rest of the day. Today maybe not as much because the kids were off of school, but most days I'm moving from about 6:30am until 9pm when the kids go to bed. Breakfast consists of throwing something together for Jeffrey, usually cereal or waffles, and figuring out what to do with Jax. He has meds that need to be prepared, prevacid and aspirin get diluted in water to go through his tube, plus a vitamin and two other meds. If he's having an oral meal, I have to make that plus get him to drink his Pediasure and change his diaper. After breakfast, the kids have to get dressed and brush teeth. I have to help Jax with his teeth, and I usually put his new shorts for the day on when he gets his diaper changed. Then I have to pack lunches, make sure Jeffrey's uniform is on point and that he's taken care of the dog, and then we leave. Drop off Jeffrey at latchkey around 7:30 (yes, I do all of that in an hour), come back home. If Jax didn't finish breakfast, he finishes it then and gets on the bus at 8:15.

After the kids are gone, I have a number of things I'm involved in to help keep me busy. Because, you know, being the mom of a special needs child doesn't keep me busy enough. I have daily cleaning that needs done (I follow a schedule, well, I made one to follow haha), plus I typically spend some time on the All Things Kabuki website. I help a friend with her business website as well, and in return she dyes my hair purple. The past 2 weeks I've been working on a project for a teacher at Jeffrey's school, but I finished that yesterday. I'm sure I'll have projects from both kids' schools to work on as the year goes on too, I plan to be involved at both places as much as I can. That includes monthly walks to the library with the 1st and 2nd graders at Jeffrey's school to help out the teacher.

Around 3pm, as long as there are no appointments that day, I typically leave to pick up Jaxson if it's a hot day or if traffic looks bad. He's done at 3:30 and then we return 30 minutes south to pick up Jeffrey at 4. Luckily, my husband gets off work by 3, so most days I don't have to get both kids, just one. When everyone gets home, they get a break until dinner at 5 (made by Jayson, hubby), feed the kids, do homework and do baths. Around 7:30 I have to get Jaxson's second round of medicine ready in syringes to go through his tube. Once he gets his medicine, it's what we call "chill time" and the kids are laying in their beds either reading, playing quietly or watching their tablets until 9 when everything gets shut off.

I really wanted to hit on Jaxson's meds and things because, as I said, my hands are the bane of my existence. I can no longer write with a pen, which makes me really sad because to me, there's nothing better than putting a pen to paper. But I can type, at least for awhile. Even that makes my hands ache, though!

So all through the day, and this is an example of a typical day which is not every day, I'm battling stiffness, soreness, pain, aches and twinges while doing all of these things. Eventually, even when the pain is tolerable, it's just too much to bear. It's frustrating, it's depressing and there are definite days when it's hard to keep moving. And there are days when my body says, "Nope, you're done. Time to sit down." I literally have no choice but to rest if I want to keep functioning and be able to take care of my kids. It's not just taking care of them, either, though, it's about making sure they get to do things that make life fun. Like go to the park, go to the zoo, make crafts, etc. These are things that are hard for me, things that take more energy than I have, things I know I'm going to pay for if I do them but I do them anyway.

Imagine living every day with some part of your body in pain. Imagine the effect it would have on you. Even sitting here, typing this, my hands are swollen, stiff and aching. I'm sitting on a pillow and keeping my back straight, but it is killing me and there are points in my back that tingle as if they're going to sleep. My wrists ache from the angle my arms are resting on the table, but if I move them then another part of my arm will hurt and this is tolerable. Think about having to make those decisions: how should I sit so that I'm the most comfortable? How should I lay so that I don't ache when I get up? Those are things that "normal" people don't have to think about. They just lay down or sit down and it's no different than anything else. But for those of us with fibro, every tiny movement we make can change the way another part of our body feels.

The next time you see me in person, watch me. I move around A LOT. Sitting or standing, doesn't matter. I can only sit or stand in the same position for a short time before something starts to bug me and I have to move. Then it happens again and I move back. And again. And again. Most of the time I don't even do it consciously, but on days when I "fidget" a lot, I notice.

This post merely scratches the surface of dealing with pain every day. Tomorrow's blog could be completely different. You'll have to come back tomorrow to see!

"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." -Unknown