Thoughts on Chronic Pain

So if you weren't aware, September is Chronic  Pain Awareness Month. I'll be honest, I didn't even know. But I figure as long as I know now, it's worked, right? I've been working REALLY hard lately to not focus on my pain and instead put everything I can into my daughter. It's really difficult sometimes, but I don't really want to go down that rabbit hole, so I do what I can to almost deny the pain. Let's be honest though, it's not really that simple. So, in honor of Chronic Pain Awareness Month, here are my thoughts.

It struck me today. I can't remember a time in recent memory that I haven't woken up in horrendous pain, and gone to bed worse. Everything from sitting to breathing hurts. Imagine that for a second. Literally every single part of your body feeling like it was on fire 24/7. I'm not being dramatic. I'm not making a mountain out of a mole hill. I'm being completely honest. Non-stop burning pain. Now, every time you move, think about what that pain would do. Think about the fabric of your shirt or pants rubbing against your super sensitive , burning skin. Sounds awful, right?

Now take a second and think about the things you do during the day. You wake up, roll out of bed and head to the restroom to brush your hair and teeth before jumping into the shower. Maybe you already have your work clothes set up for the day (way to go, by the way!), or maybe you spend 5 minutes in your closet looking through everything to find something cute. You run out the door, commute, work all day, come home, eat, maybe watching some TV on the couch, then head to bed. Not a bad little day, I'd say. But let me take you though what my brain does in the same scenario above.

Wake up: Oh my God. Everything hurts. I know I didn't run a marathon yesterday, why does it hurt so much more today?

Get to the restroom to brush my hair and teeth: Use the hallway bathroom since it's been remodeled to accommodate me. Things have to be at the perfect height so I can properly use them.

Take a shower: Use the shower seat. You can't stand too long without your legs swelling up and bruising like crazy. Don't let people see those legs! And be REALLY careful about shaving your legs. Even the tiniest touch of the razor can send you into a days-long flare up. No one wants that.

Get ready for work: Go into closet and PRAY for something comfortable and that won't rub your skin too hard during the day. Layer up (even in 100 degree weather!) because you don't want anyone to see your bruised legs, the leg braces, or bright red arms.

Get baby ready: She has no clue that you're in pain, and it's your job to keep that going. Give her as much love and cuddles you can. She pinches you or accidentally kicks you. Do your best not to cry. She doesn't understand, and she certainly didn't mean to hurt you. Hug her and kiss her. She needs your smiles.

Commute to work: Use the car that wont hurt as bad. Got a vehicle specifically based off whether or not you're able to easily get in and out and the position you'll be in for the next 45 minutes as you drive into work. Pray there's not much traffic, otherwise you'll be in too much pain before the day even starts.

Work: Spend your day sitting/standing/bending/walking - depending on what you'll be doing that day. Hope to God nothing comes up during the day that you'll have to explain to someone why you can't physically lift or walk anything.They have no idea what my illness means, so explaining it would open a can of worms I'm not ready to open.

Drive home: See commute to work (and add the pain of the work day on top of it)

Make dinner: Luckily, I have an amazing husband who gets off work 2 hours before I do. He's picked the baby up from day care and is already working on thawing dinner (which I have already made and frozen during the weekend in anticipation of the pain of the week.)

Watch TV: Maybe watch a few of my favorite shows while balancing playing with the baby and crawling on the floor. Don't sit in the recliner - you don't have the leg strength to push it back in.

Head to bed: Take all 4 of your medications before bed because they all make you loopy. Try to sleep through it. Get into the bed that was purchased specifically with your illness in mind. The bed cannot be too high or too low. The mattress supports your back and legs as best they can. No coil springs - they can't support the back without poking it and sending you into a flare-up!

Complicated, huh? I pre-plan pretty much everything. No suprises. Every single thing I do effects my pain and therefore the energy I need to get through it. Everything from cooking finners all weekend and freezing them so I don't have to cook on weeknights, as well as making my daughter's bottles for the following day (with the use of my Baby Brezza Formula Pro, which is a Godsend and worth every single penny!) is completely planned. Anything from having to go out in the evening to having someone stop by even for a few minutes takes lots of planning.

Now, as much as I hate this for myself, imagine how my husband must feel. He never complains. Ever. I tell him what  I'm feeling (sometimes) and he simply supports me in any way. No questioning me, no telling me to pull more weight. But we don't go anywhere. We don't do anything during the week. Every single thing we do is planned. I can imagine what looks like organization and helpfulness to me, might look like a cage to him. He says it's good and he's totally fine with it, but would he tell me if he didn't? I don't know. I imagine he thinks it would hurt my feelings, so he's too hesitant to say.

That, my friends, is chronic pain. I don't even bother taking pain medication anymore. It doesn't work, and it makes me sick anyway. The medications I'm on are MUCH more serious (which means they're hell on my liver!).

But the amazing thing about all of this, is that I have a much more mild case than many. I can still walk. I can still take medications to help ease the pain. Many with RSD/CRPS are not that lucky. So, as dramatic as all of this may seem, there are folks out there who would be happy to have my pain level. It might even be a relief to them. And that saddens me more than you know.

The research is still new, but there's a possibility that RSD can be passed from mother to child. Every single day I obsess as I watch my extremely active baby and question whether or not I see signs of RSD. I wouldn't wish this on my worst enemy, so I can't eve imagine what I would do if  we found out Mia had this, Ugh, I can't even think about it.

If it wasn't for the funny way I walk, or the leg braces, you probably wouldn't even know I had a chronic pain disorder. You can't see the nerve damage, or the muscle weakness. You can't see my heart problems or see my bones changing. Maybe down the road you will, but  I'm going to do everything in power to have you see me as normal as possible.

That's it, folks. It's a long road. It's a scary one. I'm lucky enough to have super awesome people in my corner to help lift me up when I need it. But I wanted to share this with all of you. Please take a good long think about it before you mentally label someone or assume they're exaggerating. I can't speak for other pain disorders, but I can tell you we'd give anything to make this stop. There's no cure, and research is slow. Most people don't know this disease exists, or that it's the #1 ranked pain on the McGill Pain Scale. That tops birth with no drugs, or having a digit amputated without being knocked out. Every. Single. Minute. Forever. Dude, that's hell.

So, take a moment and think about the people you know and love. If you know someone struggles with pain, send them a message of encouragement or simply tell them you understand if they can't meet you for dinner or cocktails. Pain can do funny things to you, and the more positive people you surround yourself with, the happier your soul will feel. :)