The Chronic Pain Cycle

Chronic pain is an intensely difficult for people to understand if they’ve never been through it first hand. And sometimes, even when you’re the one living with it every day, it’s still hard to understand.

The last few months, I’ve had pain that has just gotten worse and worse with very little relief. When you’re in excruciating pain every day, your brain chemistry changes and your personality changes. There are good days and there are bad days. Some days, I can go to the gym and lift heavy weights and ride my bike. Other days, I can barely get out of bed because the pain is so bad.

But with chronic pain comes a never-ending cycle of coping. This cycle is pretty similar to the stages of grief, but it’s not something you just go through once, it’s a continuous method of coping.

After diagnosis, there’s the initial grief…as anyone would grieve after receiving any life altering news. How did this happen? Did I do something to cause this? Will life be like this forever? Will the pain ever go away? How much longer will I be able to keep working? How will this effect my ability to be a mom as I age?

Getting a diagnosis hit me like a ton of bricks. My whole life, I had always felt like something was wrong, but when I got the diagnosis of Ehlers-Danlos Syndrome, it was like I had punched in stomach. I wasn’t ready for it. I wasn’t prepared to hear the words “daily pain” and “no cure”. After the diagnosis, there’s an initial grieving process that we must go though. I had to grieve the loss of the life that I had dreamed of for myself. I had to accept that this would be my life, for the rest of my life.

But there’s a whole other coping process going on as well. When the pain never ends, neither does the cycle of grieving. Once I grieved through the initial shock of the diagnosis, I picked myself and carried on with my life. But the thing is, there’s only so long that a person can stay strong for.

When it comes to chronic pain, sometimes it just breaks you. You can handle the pain and the other symptoms over and over, every day. You push through and enjoy your life. Until you just can’t take it anymore. You break down. You have to cry and let it out. The pain just builds up so much and you break. Your spirit gives in and it can’t endure anymore suffering and you panic at the thought of, “will I feel like this forever?”

One of the most terrifying feelings I’ve ever experienced is the fear of not knowing if the intensity of pain I was feeling at that exact moment would ever cease.

The fear then leads way to anger. Anger that I have to deal with this. Anger that there’s nothing I can do to make it go away. Anger that doctor’s don’t listen. Anger that there are medications and therapies out there that would help me, but I’m not allowed access to them because of the way our laws are set up. Anger that the people who make the laws have never actually had to deal with severe chronic pain.

Now, when I reach this point I’m the cycle, I’ve learned that I have to let myself feel the emotions. I have to remind myself that this is NOT permanent and I have to ride it out. If let myself forget, even for a moment, that “this too shall pass” (it may pass like a kidney stone, but it’ll pass), I get caught in a spiral of inconsolable grief and the desperation will consume me. And once I go down that rabbit hole, it’s much harder to claw my way back out.

There have been times that I’ve tried to just stuff my emotional response to the pain. If I pretend it’s not there, maybe it will go away. But let me explain why that doesn’t work…when I ignore it, it builds up inside of me. My anxiety spikes and (in the moment) it’s hard for me to figure out why. If I try to push through when my body is, very obviously, telling me to rest, I will end up deeper into that spiral of inconsolable grief.

Once you find the right doctor and you’re able to find the right treatments and therapies, you’re able to process much quicker to the ‘hope’ stage. This part of the cycle is tricky though because, sometimes, it could take weeks or months to find something that helps relieve the pain. Sometimes, you encounter doctors who are just plain unwilling to help.

The best doctors are the ones who take the time to listen and respect what you have to say. They’re the ones who understand that they don’t know what it’s like to live inside the torture chamber that is your body. Those doctors are the ones who give you hope.

And once you reach the hopeful part of the cycle, you don’t know how long it will last. Because, remember, you can only be strong and “just deal with it” for so long until the cycle starts all over again.

Chronic illnesses are unpredictable. You never know when a flare is going to strike or how hard it is going to hit you. But you have to be prepared, at all times, for your body to break out a sudden and powerful assault against itself. And sometimes that fear can be more crippling than anything. There’s a fine line (a VERY fine line) between listening to your body and resting and taking it easy versus proclaiming that you will not allow this illness to control your life.

If you’ve been fortunate enough to never feel the agony and despair that is chronic pain, count yourself incredibly lucky. But take a moment to imagine…imagine the pain you felt last time you were in a car accident or had the flu, now imagine feeling that pain all day, every day, for the rest of your life. That doesn’t sound very encouraging, does it?

You may be in more pain than you ever thought humanly possible, but you’re also a lot stronger than you’ll ever realize.

Happy New Year, fellow spoonies. May this new year bring you rest and comfort and relief.

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Behind the Scenes of a Chronic Illness

Every morning, when I wake up, I have to pop my joints back into place. Sometimes I’ll make light of it by singing, “the hand bones connected to the arm bones,” as I’m popping my wrists back into place. Other mornings, I don’t even have the strength to smile.

Once I have my shoulders, knees, hips, hands, and elbows all back into place, I can begin to stand up. I have to stand up slowly because standing up too fast will make me dizzy. Which will land me, if I’m lucky, laying back down for a few minutes or, if I’m not lucky, face first on the floor.

Once I get up and start my day, I begin to evaluate what my pain levels are at. This is where my day begins and sometimes where it ends also. Some days, I can get up and be productive. Other days, making it from the bed to the couch is my biggest accomplishment.

Most days, the people around me don’t realize how bad things are because I’m good at masking it. I function at pain levels that most people wouldn’t even consider getting out of bed for.

Every month, I keep a bullet journal tracker for all of my medical stuff. I’m able to track my pain and dislocations. Because of this, I’ve been able to notice patterns and specific triggers. But what I’ve also learned by keeping these trackers is that I’m really good at not showing how bad things are.

My body moves in weird ways. Ehlers-Danlos Syndrome effects the body’s production of collagen, which effects the stability of connective tissues. My joints aren’t stable and that lack of instability causes dramatic amounts of pain. But this is just some of the instability you can see…

There’s also a lot of instability that you cannot see. Because my connective tissues are weak, Ehlers-Danlos has led to the development of other conditions. I also have a chiari malformation and idiopathic intracranial hypertension. These conditions have begun to cause neurological deficits due to pressure on my brain and excess spinal fluid.

I tell you all of this, not to ask for pity (please, don’t feel bad for me), but to raise awareness.

A lot of times, we (people with chronic illnesses) pretend that we’re doing okay in order to not make the people around us uncomfortable. But 9 times out of 10, when we’re telling you we’re okay…we’re really not okay. But because people don’t know how to respond when we’re honest, we just pretend that everything is fine to avoid the awkwardness. But the thing is, it’s okay if you don’t know what to say because we don’t know what to say either. It’s a hard thing to deal with. But we’re the ones living through it everyday. So if your uncomfortable with it, just imagine how we feel…

You never know what someone is going through. You never know what is going on behind the scenes in someone’s life. It costs zero dollars to be kind, so just do it.

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