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.

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The Cranial Assault of 2018

Sometimes, life throws you curve balls that completely change your plans. And sometimes those curve balls result in emergency brain surgery and nine days in the hospital.

I have a VP shunt to treat idiopathic intracranial hypertension.

On Thursday, November 29th, my VP shunt failed. My husband and I were at the movie theater, watching Crimes Against Grindelwald when I realized the shunt reservoir was sunken in where it was supposed to be puffed out. I had been having some worsening neurological symptoms for the previous few days and had even spoken to my doctor’s office the day before. But we had come to the conclusion that it was all just a result of being sick with a cold. Now, if you know me and my obsession for all things Harry Potter, you know we finished the movie. After the movie, I called my doctor’s office to advise me what I should do. I wasn’t able to reach anyone, but did leave a message. It was late in the afternoon though, so I wasn’t sure that I’d hear back that same day and I knew this was an issue that needed to be addressed. I knew the shunt being sunken in was a bad thing, but I wasn’t sure how bad. I decided to call the nurse advice line through my insurance, who advised me to go to the ER. I REALLY didn’t want to go to the ER, so I called the my doctor’s after hours line and had them page him. My doctor called me back and I explained to him what was going on. I told him that I was mostly calling him to have him tell me I didn’t need to go to the ER, but I was starting to feel like he wasn’t going in that direction. He told me, “stop f***ing around and get your ass to the ER now.” So, reluctantly, I made arrangements for the kids and had my husband get me to the ER.

We were supposed to be leaving on vacation to Orlando the following day, so I was in a bit of a panic thinking that everything we had planned and paid for would go out the window.

When we got to the ER, I was whisked back to a room immediately. When the doctor came in, he was a nice enough person, but I’m pretty sure he’d never seen a VP shunt before. I explained what my symptoms had been and the issue with the shunt reservoir. He briefly felt my head and asked, “so this isn’t what it’s supposed to feel like?” Umm…no, it’s not.

They did a CT scan and X-rays. Eventually did blood work as well. The doctor said that he was consulting with the on call neurosurgeon, but that he couldn’t get there to see me until the morning, so I was going to be admitted. I was in pain and nauseous and scared. My husband sat by my side, holding my hand until they got me admitted, but then he had to get home to relieve our babysitter and get the kids up and ready for school.

Later that morning, I got to see the neurosurgeon. He assessed my shunt and told me that it needed to be fixed ASAP. But it was a Friday and he couldn’t do the surgery that day, so the surgery was scheduled for Monday…which meant that I was looking forward to a painful, lonely weekend spent in the hospital. To help ease some of the pain and pressure through the weekend, the neurosurgeon performed a lumbar puncture. He removed about 30ml of CSF and hoped that, that would hold me over until Monday. To be honest, I’m not sure that the added pain and discomfort of the lumbar puncture were worth the little relief it gave me.

At this same time, we had had a vacation planned for months. We were supposed to be leaving that day. We had my dream vacation planned and it wasn’t just the immediate family. We were going on vacation with my mom and sister and her family as well. We were going to Universal Studios Orlando. Most importantly, I was finally going to get to go to the Wizarding World. My husband and I agreed that he would take the kids and go to Orlando as we had planned while I stayed in the hospital and had surgery and hopefully I’d be home before the family got back from vacation. As much as I hated the thought of being alone and scared in the hospital while my family was enjoying my ideal vacation, I knew it was important for the kids to go and make once in a lifetime memories with their aunt, uncle, cousin, and grandma.

So I stayed at the hospital while my family was off enjoying my dream vacation. I had a few great friends stop by and visit me. I had great nurses. I reminded myself, “this too shall pass.” It may pass like a kidney stone, but it’ll pass.

When we finally made it to Monday, the neurosurgeon told me I was his second surgery of the morning. And because I was having surgery, I wasn’t allowed to eat anything. The hours passed, hungrily, through the day. It wasn’t until after lunch-time that I was told that my surgery had been pushed back to 5:30pm. Monday was one of the worst days. It was hard to spend the majority of that day hungry, anxious, in pain, and alone. Thankfully, I had a friend who was able to come visit in the afternoon.

I wasn’t actually taken back for pre-op until around 6:30pm and then wasn’t taken to the or until around 8:00pm. I think it was around 12:30 when I woke back up. I woke up ok excruciating pain. I don’t really even know how to describe it. It was like I could feel each individual stitch. Once I was able to form actual words, I was able to tell them that I couldn’t hear out of my right ear (the incision was on the right side of my head). I don’t remember what all happened. Everyone was moving and everything was just buzzing around me. My ear felt muffled; it sounded like when you’re wearing ear plugs. Ultimately, they decided that the hearing loss was caused by blood and betadine settling and building up in the ear canal during surgery. It took about 5 days before my hearing was almost completely back. It’s still muffled from time to time, but it comes and goes.

My friend who had been visiting with me that afternoon, had stayed at the hospital while I was in surgery. I don’t even remember what time it was, when they finally let her back to my room in the Neuro ICU. But I do remember that she sat by my bedside all night. The pain was pretty intense all through the night/morning. I would fall asleep for a few hours at a time and each time I woke up, I would be in tears from the pain. Clearly, she couldn’t replace my husband, but it was nice to not have to be alone during this time. I’m incredibly thankful for the three days she spent cooped up in the hospital with me.

Sometime after surgery, I realized that the entire right half of my head had been shaved. In the grand scheme of life, I know a functioning brain is more important than hair, but my heart sunk when I realized how much of my hair had been shaved. My first brain surgery, the doctor shaved such a small section, I was able to cover it just by the way I parted my hair. This time, I would end up with a completely bald head. I just wasn’t mentally prepared for it.

I felt a lot of emotions those first couple of days. Between the pain meds, the pain, and the sleep deprivation, there were a lot of tears shed. I had a couple of great nurses who really helped make it all somewhat bearable. Tuesday night, I used a bag of wipes to clean the betadine and blood out of my hair and braided back my remaining hair. I’ve never had much talent for braiding hair, so I was pretty impressed with myself. LOL.

On Tuesday, the neurologist who originally told me to go to the ER, stopped in for a visit. He wasn’t actually involved in my care there, so it was nice that he visited, even though he didn’t have to.

Originally, it was expected that I’d only spend 24-48 hours in the hospital after surgery. But each day, the pain wasn’t improving. The worst of the pain was (and still is) in the base of my skull and neck. My head feels like bobble head, it hurts to just try and hold my own head up. I had this feeling before surgery, but I’m pretty sure the “bobble head” feeling actually got worse after surgery.

My family came back from their Orlando vacation that Friday afternoon. And they brought my mom home with them. There really hadn’t been much improvement all week, so I was still in the hospital. And because I was in the ICU still, my kids weren’t allowed to visit. My husband came to visit on Friday. We had hoped that I’d be going home on Saturday. Saturday rolled around and the doctors didn’t show up. My mom and husband came up to visit around 4:30pm on Saturday evening and then around 5:00pm the neurosurgeon finally came through. He asked me what I wanted and I told him that I’d rather be miserable in my own bed.

So we got packed up and headed home.

I wasn’t able to sleep in my bed that night because I couldn’t lay flat. But my recliner was still more comfortable than the hospital.

Once I got home, I knew we’d have to go ahead and shave the rest of my head. The remaining half of my hair was still in the brain, so I cut the braid off before I had my husband start shaving it.

I didn’t think I’d cry as much, about shaving my head, as I did. But as I cried, while my husband shaved my head, he decided to shave his also.

I didn’t think it was possible to love him even more. I was wrong.

Going through this whole ordeal without him by my side, was probably the hardest part of all of it. The pain and nausea and anxiety were all tough. But being in the hospital and going through such urgent surgery without him there, was the worst.

I’ve made it through and I’m on the other side. Now it’s time to try and get back to life as “normal”…whatever that looks like.

Sensory Deprivation: A Chronic Illness Perspective

A sensory deprivation tank is a lightless, soundproof tank filled with salt water at skin temperature, in which individuals float. I’ve heard a lot about these tanks in the last few years and I’ve wanted to try one.

As a person who deals with extreme sensory overload on a daily basis, a sensory deprivation tank has always sounded so relaxing. I often use sensory deprivation in the form of noise-cancelling headphones and a dark room to help calm my sensory related anxiety. So for my birthday, my mom bought me a float session at Remedy Float in Savannah, Georgia.

It’s been a little over two weeks now, since my float. My biggest question immediately after the float was, how long will this relief last. Now that I know the answer to that question, I figured it was time for a full, detailed review of my experience during and after.

I had a little anxiety, leading up to the session. Even though I knew that I wanted and needed the sensory deprivation, it was an unknown that I wasn’t sure how to mentally prepare for.

I don’t really know what exactly I was expecting, but what I saw when I got there, wasn’t it. I wasn’t planning on going to space today. But when I was shown to my “cabin”, I immediately wondered if I needed to run back home to get my spacesuit. LOL.

The employee showed me how it works, handed me some ear plugs, and left me to it.

It’s a weird feeling, when it’s so pitch black that you cannot tell if your eyes are opened or closed. At one point, I literally had to reach up and touch my eyes to find out whether or not they were open. FYI, they were open.

My session was 90 minutes long. You can get in and out of the tank as needed or even prop the door open if you can’t handle the complete darkness. I was able to spend the whole 90 minutes in the tank without needing to get out or prop the door open.

I got undressed, put in the ear plugs, and rinsed off in my private shower (just as you would rinse off before getting in a pool). I opened the door, stepped in, and lowered myself into the water. I knew the water would be buoyant, but I was still surprised by how quickly my body bounced up to the surface as I laid my body back.

I don’t know how long it took my mind to float off into a trance, but because the water is the warmed to skin temperature, once I had laid still for a few minutes, I couldn’t even feel the water around me anymore. I felt like someone had cast a “Wingardium Leviosa” spell on me (high five if you understand that Harry Potter reference, lol). During the float, my legs would twitch at random moments, which would pull me from my trance-like state. I don’t remember, now, the specific thoughts that I had while I was in my trance, but I know I had some strange ones. My mind wandered as if I was dreaming, but I was still awake.

While I was in the tank, I felt a calm that I don’t think I’ve ever experienced. When I took away the lights and sounds that constantly cloud my mind and trigger my anxiety, my brain was able to relax. My brain was able to let go. I didn’t have to try to make sense of my surroundings because there was nothing to try to make sense of. For the first time in…ever, my mind could just “be”.

One of the strange things about being in the tank is, without any outside stimulus, the body isn’t able to keep track of how much time has passed…so I couldn’t tell how long I had been in the tank.

Because I have been in so much pain for so long, my body has built up internal defense mechanisms that have allowed me to cope with the pain. The downfall of that, though, is that my brain and my body don’t connect and communicate very well. Almost like, my brain is protecting me from my own pain levels because if my brain knew how much pain I was actually it, it would stop allowing my body to function. I say all of that to explain, while I was in the tank, my brain and body were able to reconnect. I was able to tune in to the areas of my body that had been ignored without the same pressure and pain I would feel outside the tank.

When my 90 minutes in the tank ended, the speakers inside the tank started playing tribal drum music to tell me that my time was up. The music started softly and I couldn’t hear it, at first, because of the ear plugs I had in. However, I did feel the vibration of the sound waves. As my body started to connect with the stimulus of the music, I reached above my head to crack the door open, to allow my eyes to slowly re-adapt to the light.

After a few minutes, I pulled myself up and out of the tank. As I stepped out, onto the floor, I immediately noticed that my joints felt much different. There was still pain but it was much lower than it was before I got in the tank. And the pressure that I had constantly felt in my joints for, pretty much, my entire life was greatly diminished as well.

I took a shower and washed the salt water from my body. Slowly but surely, I allowed my brain and body to reconnect with my surroundings. I began taking a “pain inventory” as I assessed the level or relief I felt.

And that’s when I noticed that, for the first time in MONTHS, the pain level in my head and neck, from the chiari, was lower than it had been in a long time. As I got dressed, I cried uncontrollable tears of relief because the pain had been so severe, for so long that I was awestruck to feel even the slightest relief that no other medication or therapy had been able to give me.

The next few days, after the float, the same sensory inputs that would usually send me into a sensory overload were easier for my brain to process.

The pain and pressure relief that I felt throughout the joints in my entire body lasted about a week. I’m not sure how frequently sensory deprivation floats are recommended, but if there was any way that I could afford to float once a week, I think my quality of life would increase dramatically.

If you ever have an opportunity to schedule a session in a sensory deprivation tank, I HIGHLY RECOMMEND IT! Even if you’re only able to do it once, do it! It’s still worth it. The relief, even though it’s not permanent, gives you a reminder that there is still hope out there for relief.

Float on, friends.

(Note: I think I heard that some insurance companies will cover the cost of a sensory deprivation float. So that’s an option to look into as well, to help offset the cost.)

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