Tag: CRPS

Is Surviving A Testament Of Strength?

A Girl In A Complex World

I ventured outside today. Not because I wanted to though. The last thing I wanted to do was put a coat and boots on to go walk around in the snow. I went out because I needed to. I’ve barely moved from the couch in 3 days. This year is not off to a good start.



First, we had the first-ever earthquake here in Central Newfoundland. Very minor. But there has never been an earthquake here. Then we had a major 3-day storm. Our driveway was washed out and our roof had some damage. Thankfully it was minor. Then I ended up spending 9 hours in the ER, for dehydration.

Through all of that, I’ve been struggling just to keep breathing. CPTSD has been kicking my ass. Between the paralyzing panic attacks, nightmares, disordered eating (restricting, binging, purging), chronic pain, and insomnia every breath I take requires effort. Putting in effort takes energy, and energy is something I have very little of. Or maybe it’s just a lack of drive or willpower. Either way, I don’t have much of anything right now.



But today I managed to tap into something inside of me that gave me a little boost. I was wiping away tears as I was putting my boots on. The dogs were so excited to have mom play ball with them. They’ve really been feeling the effects of what I’m going through and that has created such a massive amount of guilt for me. I try and tell myself that I really am doing the best that I can right now but it feels so fake.

The fresh air was amazing though. The sound of the waves along the shore was incredibly comforting. I miss walking there with the dogs. Another reason I dislike winter so much. When I get cold it triggers my CRPS and sometimes I’m in pain for several days after. It’s frustrating. Especially when more than half of the year is cold here in Newfoundland. So outdoor activity is quite limited. It’s a big factor in the decline of my mental health once the fall months are upon us.

Today the cool air was welcomed. It wasn’t windy, which made it much more manageable. It was as if by breathing it in I was bringing back a little glimmer of life. It even energized me enough to later vacuum, sweep, and mop through the house.

It was discouraging though to find myself standing in the middle of the room, on 3 separate occasions, completely dissociated, and I had to check my phone to see what time it was. Everything has just been so surreal. Over the last year, 40 years of trauma decided to all come flooding back at once, at times leaving me completely incapacitated. It’s been one of the hardest things I’ve ever had to go through. I’ve shed more tears these past few months than I have my entire life.

So yeah. It’s been tough. But I guess surviving all of this is a testament to my strength? Maybe. I dunno. But I do know that growth doesn’t always look like success. Sometimes growth involves holding on when everything just feels so damn heavy. At least for me, it does.

The old me would have given up long ago.

The Storm Has Destroyed Me … Again

A Girl In A Complex World

Did you know that butterflies don’t fly when it’s raining? Their wings are incredibly delicate and the raindrops would be damaging.

So they rest. They wait it out. Its self-preservation.

So it’s ok to rest when things get stormy in our lives. It’s ok to take whatever time we need to recharge. It doesn’t make you lazy, worthless, or ineffective. It’s a necessary part of life.

Unfortunately, this is a life lesson that I have struggled with tremendously. I developed a belief that resting, apart from nighttime sleep, is not ok and it does nothing more than make me ineffective. I’ve battled with great amounts of guilt and shame when I have been forced to stop ‘doing’ and must simply ‘be’.

Life has been pretty intense the past couple of weeks. Lots of family drama has been stirred up and old hurts have resurfaced. Loved ones are unwell, both physically and mentally, and my presence was needed. There were birthday celebrations for a very special little girl and there’s been some long hours spent traveling. On top of that, I lost a girl friend. Not by death, but through mutual agreement. Neither of us is good at communicating things with each other when we struggle with things in life and it has resulted in some deep hurt. While we (and our spouses) have agreed to remain civil, as community involvement will sometimes cause us to be together, we’ve agreed to go with no contact from here on.

It’s been pretty stormy.

And I have done an extremely poor job at this self-preservation thing. Unlike the butterfly, I have not taken steps to protect myself. And as a result, I find myself bedridden today. My body said enough is enough. CRPS (Complex Regional Pain Syndrome) is attacking my neck and shoulders, the majority of my spine, and both of my lower legs. Burning, throbbing, electric sensations are rapidly firing. My legs buckle beneath me when I attempt to stand, refusing to continue carrying me. I cannot feel the floor beneath my feet yet sensations of broken glass trapped in my socks are making it difficult to even breathe.

It’s pouring rain here today. The storm has destroyed my wings. And once again I find myself in a state of forced rest. Will I ever learn?

Rest, Restore & Repair

A Girl In A Complex World
Buddy & Me

Some days you just gotta give in. Self-care today has consisted of a whole lot of nothing. No make up. No hair styling. An old pair of ripped jeans. (Which we all know are the best anyway) And an old baggy sweater. I’ve had slippers on over my fuzzy socks and a blanket has been kept within reach.

I am both mentally and physically exhausted. It’s day 4 or 5 of this recent CRPS flare. I’ve lost track, as the days and nights have kinda blended into one another. Chronic pain can be brutal on any level. But these flare-ups of Complex Regional Pain Syndrome push things to a whole different level.

My body can’t regulate it’s temperature. I go from shivering to sweating and back again in the blink of an eye. Even a light sensation of something against my legs or feet feels like razor blades slicing through my skin. I feel like my upper body is currently wrapped tightly in barbed wire with electricity shooting through it.

Up until last night, I have been pushing through, not letting the pain slow me down. But while picking up dog toys around the house before bed, nausea swept over me and the vomiting started. It was a long night of trying to lay still and keep my breath regulated because each time I moved I’d throw up.

So today, I was forced to prioritize rest. Maybe I should have done this before. But I guess in the back of my mind I just feel that by resting, I’m letting the pain win. I keep hoping that it will all be OK and will go away again in a day or 2. Except I should know by now that these flares never go away that quickly.

Rest is hard for me. Especially during the daytime. But I have to say that I actually enjoyed having this down time today. My boy was by my side (and my head!) all day. There’s such a profound level of comfort that comes with having a dog next to me. It puts my entire self at ease when I feel the warmth from their body against mine.

I ate without putting too much focus on good vs. bad food. I treated myself to some diet pop and chewed bubble gum like there was no tomorrow. Netflix took a chunk of my afternoon once I got caught up in a series called Cobra Kai and while I did do laundry, it still sits in the basket waiting to be folded. But hey, at least it’s clean!

Days like this require a lot of self-talk. Constantly needing to tell myself that it’s perfectly OK for me to rest, that it doesn’t mean I’m a fat, lazy, slob. Maybe this wasn’t actually an unproductive day. But rather a day where repair took place. Maybe even a little healing and restoration. Because my pain level has dropped from an 8 this morning to about a 4 or 5 here now at 9pm. So I must have done something right!

Buddy & Me

You Can’t Judge An Illness By How A Person Looks

A Girl In A Complex World

I have Complex Regional Pain Syndrome and I don’t look sick. But every day my body is in varying degrees of  pain.

In 2010 I was in a pretty devastating car crash. It turned my life upside down – literally. Among other injuries, I had my back fractured and I lost my left arm. But it was the damage from the frostbite on my feet that eventually led to a diagnosis of CRPS several years following the accident. Since developing this chronic illness, pain is something I’ve come to know on a very intimate level.

Complex regional pain syndrome – CRPS – is one of the most painful conditions known, registering a staggering 42 out of 50 on the McGill pain scale. That is worse than the pain of the amputation of a finger or toe with no anesthetic, which registers as 40 out of 50, and it is said to be worse than childbirth.

The most excruciating part is that the pain is long-term, most likely a lifelong thing. CRPS is known as the world’s most painful incurable condition. In the United States, it is referred to as the “suicide disease” because so many people resort to suicide as the only means to escape it.

Another difficult part is that CRPS is not a well-known disease. I have encountered medical professionals who don’t know what it is and I have had to explain my diagnosis to them. They often have a hard time believing the pain is as severe as I describe it. They don’t believe me that it feels like there is barbed wire wrapped around my legs. But you seem to be walking ok, they said. Or, you look like you are doing well. I can’t tell you how frustrating that part is.

So I stopped describing what my pain truly felt like to me. I don’t say that it feels like there are a hundred ice picks stuck into my spine. Instead, I just say my back burns. It seems to be more accepted that way. Which I have to admit, feels quite invalidating. In my experience, the more graphic (and accurate) the description of my pain is, the less likely I am to receive adequate treatment. So I often dial back my pain complaints. It tends to make friends and family question it’s validity because I look great!

So I repeat it again – you cannot judge an illness by how a person looks.

🦋

My Spirit Is Temporarily Heavy

A Girl In A Complex World

My head feels unnaturally heavy. It takes effort to just hold my head up straight. Letting it rest against the back of my chair while I rock brings relief. I feel like I’m stuck inside a cloud of thick fog. Going to different rooms in my house, walking on the beach, out in my garden, even to the shower, it follows me.

Things sound different. Far away. I often need David to repeat himself because I didn’t hear what he said. Music doesn’t sound right unless I’m wearing my earbuds, which I’ve been doing a lot of. Having the loud music playing directly in my ears helps drown out the constant dialog.

The level of pain in my body this evening cannot be described. I just don’t have the words. I feel as if all I can do is sit here and  keep reminding myself to breathe.

This too shall pass.

🦋

You Don’t Look Sick

A Girl In A Complex World
Me, March 2024

Imagine, if you can, waking every single morning in severe, unrelenting pain.

Imagine having to give up just about everything you love because of that pain.

Imagine not being able to do things like everyone else your age.

Imagine losing friends and feeling alienated from family because they don’t understand.

Imagine often having the highest known pain on the McGill Pain Index, but people don’t believe you because you don’t look sick.

Imagine the hug of a loved one giving you as much pain as it does joy.

I don’t have to imagine it because I live it every single day.

Warrior In The Making

A Girl In A Complex World

You are a warrior!

You’re not crazy. It has all been real, and it stretched you, and at times, it has felt as if it would even kill you.
Their words broke your heart.
Their actions broke your trust.
That injury broke your body.
That illness broke your hope.
That circumstance broke your spirit.
BUT GOD…
He came to overcome it all.
And guess what?
It never broke you!
It challenged you, and it LOST!

You’re still here. You’re not “just” a survivor. You’re a fighter. You’re a warrior. And yes, you may be covered in scars, but they are scars of deaths defeat! Your scars have become a memoir of your  journey, and they tell ONLY a story of triumph!

You see, they don’t see you the same way anymore, because a warrior was birthed from the destruction and fires in your life! What was meant to kill you, didn’t and while some keep judging you for starting over, others are clapping because you never quit! You went into the flames covered in life’s grit, but came out of the fire polished in Gods grace!

The abuse, the pain, the anxiety, the bullying, the fear, the anguish, the doubt, the worry, the crushing, the pulling, the words, the moments, the days and the years – were real, but so was your strength and resilience. You did it. You survived everything they said you wouldn’t! You are still standing, and you are a WARRIOR!

All Flared Up

A Girl In A Complex World

My pain level has been pretty extreme the past couple of days. I was diagnosed with Complex Regional Pain Syndrome (CRPS) around 7/8 years ago, after being in a pretty bad car crash. Many of my injuries fully healed while others became permanent problems. So the pain receptors in my brain are all messed up. They frequently send signals around my body, that basically scream DANGER, and various parts of me act as if they’re suddenly being crushed and shredded and ripped apart.

So that’s where I’m at today. On the couch with a heated blanket wrapped around me (many thanks to my clothes dryer!), my 2 dogs close by, hot lemon ginger tea, a bottle of morphine, and Netflix. But I feel like I’m about to lose my freakin mind! I can’t stand not being able to do stuff. To be still and quiet and just relax … its actually painful. Mentally painful. So I’m pretty well maxed out in the pain department today. I can’t say I’m overly surprised by this though.

Different things trigger these flare ups and determine the severity. Many times I don’t know what it was but sometimes I do. Right now though my guess would be stress. My mental illness is trying really hard to destroy me and my body has been on the receiving end of some not so healthy attempts to make myself not feel it. I never anticipated though that a bump on my head would cause my entire body to overreact like this. But here we are.