Another restless night, tossing and turning, yearning for relief from the pain that’s raging in both legs and head. The demon of pain strikes much harder when vulnerabilities are high. Tired. Emotionally drained. Quesy from a day of unhealthy erratic eating. Cold.
Be gentle …
The demon of self contempt emerges from the shadows, tempting me to engage in the game we so often play. He pounces on me. Stupid! Fat pig ... More derogatory comments about being fat and choosing a Dairy Queen ice cream over black coffee. WEAK.
My quivering voice whispers, “Be gentle …” in return.
Be gentle …
You precious soul. I see you. I feel your pain. Breathe through it. I am with you.
Demons become angry, cursing me for allowing the presence of gentleness. Get out, they growl. How dare you show up here NOW. You’re too late. The damage is done.
Grief comes out of the shadows. Too much has been lost, she weeps.
Anger bursts forth, with vengeance. DON’T you dare give in. Gentleness doesn’t belong here.
Be gentle …
Out of the shadow creeps memory. Thoughts of the nightmare start toppling over one another. My body shivers and shakes, building momentum by the second.
Be gentle …
Fire shoots at me from the demon of harm. New pain sears it’s way into the flesh of my upper thigh and I gasp, breath catching in my throat.
Be gentle…
You darling child. I see how much it hurts. Here, hold my hand. Give me that flaming dagger. Let it go.
“Even though I walk through the darkest valley, I will fear no evil, for You are with me.” (Psalm 23)
Heavenly Father sits beside me on the cold tile of the bathroom floor and together we watch the demons fade into the darkness at the sound of His voice.
Those words were shared in an email response that I received from my psychologist last week. It had been a difficult session and afterwards, I spiraled. I emailed her in the midst of my upset and her brief reply ended with those words – Hope strengthens, fear kills.
Yes. I am scared. Terrified – of my own brain. I have no control whatsoever of the way it reacts to things anymore. Its like I’m dealing with a completely separate entity. I’m going about my day as if im babysitting some overly dramatic child that can’t be left alone for 2 minutes or else it’s going to get into something it’s not supposed to.
I got up after a nightmare that night and spiraled into the danger zone. I remembered that Magda (psychologist) had pointed out a couple of wins from the previous week (which I really appreciated) and she said that what I was doing was helping me grow my window of tolerance. In my frustration that night, I was like, “F* my window of tolerance. I’m not doing this”.
I want to be numb. I want to go back to the days when I was void of all emotion. I used to be so frozen inside but it’s like I’m thawing out now. I don’t want my thoughts to be so loud or sounds to be so clear. When my head was heavy and foggy and I barely even remembered conversations I didn’t have to deal with any of this stuff. My brain dissociated for a reason.
I feel like I’m going crazy. The fear is strangling me. Choking me. Killing me …
I’m afraid of what’s going to happen to me. So much fear, that I’m going to just snap, go totally crazy, lose my sanity entirely.
Fear. Its trying to kill me. The fear of uncertainty. Not knowing from one minute to the next what I’m going to think or feel. The fear that I’m not strong enough … that I might find myself completely alone and have to navigate it all by myself – again … that I’m going to collapse under all the pressure … fear that I’m going to start but never be able to stop crying …
Fear kills.
*Video clip of me in the midst of a panic attack*
BUT ….
she also said that hope strengthens. Hope. I need strength. I need hope. I’m not going to find either if I just wait around for it to fall into my lap though. So I must make it my daily goal to seek out hope. I know it exists in more than just the ink on my wrist. I see it around me. I see that other ppl have it. Its just that it never feels like there’s any for me.
If you want something in this world you have to go after it right? Well, I want to be strong. I want hope to fill me and strengthen me.
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?
When you have a chronic illness, the only relief is when you sleep. When we’re sleeping we’re not angry, we’re not sad, we’re not lonely, we’re not in pain.
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!
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 becauseI look great!
So I repeat it again – you cannot judge an illness by how a person looks.
I was buried under a pile of blankets Counting my breaths Attempting to drown out all the noise Trying to slow down my racing thoughts Praying to hold on Fighting the darkness Willing myself to get up Practicing positive self-talk Bargaining with the universe Begging the pain to just Stop.
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.
Yesterday evening was rough. Anxiety had been raging through my body all day and my mood was all over the place. I was pretty discouraged. But it was a beautiful evening and I had been out in the garden. My pain level was quite high and I was close to tears. I sat back in my chair on the patio and I was looking up at the sky. Talking to God, I was telling Him how I could really use a dose of encouragement.
There was a notification on my phone and it was a pastor friend of mine. We began chatting and I shared a bit of what was going on. In between texts I was resting my head against the back of the chair, looking up at the sky. I noticed a long white jet trail stretching out above me. And when I looked closer I saw another trail beginning. I watched the jet make it’s way across the sky, soaking up the beauty of the evening sunset.
I’ve seen many jets in my lifetime, flying high in the sky, but what I witnessed yesterday was like a personal sign from God. The thought came to me … beauty still remains, you just need to look closer. It moved me to tears. The colors of the sky at that precise moment along with the fresh jet streams running above me were such a sight to behold.
I was reminded, in more ways than one, that I am not alone even though it felt that way yesterday evening. I was reminded that in the midst of struggle, beauty remains. Between the words coming to me from Linda and the view stretching across the sky above me, I was encouraged. Which is what I asked for.
I had my Ketamine infusion on Thursday This time was harder than the others have been over the past few months. Maybe because I was dehydrated …? I don’t know. But … I honestly did not think I was that dehydrated though. It never even crossed my mind when I went in there. I could tell that one of the regular nurses started to get frustrated. She said my veins were even smaller than they usually are. It took her quite a while to locate one that she would even attempt to put an iv into. She started sweating and I felt soooo bad. I wish I could have just pointed to a spot anywhere on my body and said, there’s a vein! But there were literally no visible veins to be found.
So then came the manual search. She was gentle, like she usually is, but even just running a finger over my skin and some light tapping hurt. I felt as if I was covered in bruises. Except I wasn’t. I was just cold. After her 3rd failed attempt she called over another nurse who started with my hand, then worked her way up my arm, poking and patting and rubbing to try and get a vein to swell up enough for an iv needle to thread into. She said something about my arm being cold and commented on the fact that I appeared to be quite dehydrated. Something about the elasticity of my skin. I can’t remember exactly what it was that she said.
By this point the shivering had started. The first nurse took my socks off and started rubbing the top of my foot while the other one made several attempts at what she thought were strong veins. I had been fighting with every bit of strength I had to hold back tears but after another failed attempt at yet another promising vein – in my foot this time – a sob came out of my mouth. It actually took me off guard because I was not expecting it. I thought that the imaginary valve in the back of my throat was secure in the closed-off position but the force behind that sob blew right through it.
Somewhere along the line a 3rd nurse had come over and was rubbing my other foot. I didn’t remember her coming. It’s like she just appeared. She rubbed my leg and said, I’m only going to try once and if I don’t get it we’ll have to call Jackie. Jackie is one of the anaesthesiologists in the hospital and has been called on more than one occasion to come and place an iv in me. She’s never had to poke me more than 2 times and more often than not she got it in on the first try.
So that’s what happened. They called Jackie. In the meantime the nurses tidied up around my bed and got me a clean, warm blanket. They had used the other one to catch blood that had ran down my arm. They said they were going to give me a little break and then left me alone for a few minutes. I turned over on my side and held the blanket against my mouth and nose. I didn’t want anyone to hear me cry.
I stared at the curtain and just started praying. God, I can’t handle this … It’s too much. It hurts … it hurts all over. It doesn’t usually hurt this much. I don’t want them to touch me anymore. God, please … this is torture … I can’t …….... I know you’re here. You’re always with me. You tell me you’ll never leave me and I can come to you anytime. Well, I’m here and I really need you to be here too right now. God, please … make it stop ...
Jackie pulled up a chair and sat at the foot of my bed after a brief look over my arm and not finding anything of interest. She started rubbing my foot with her hands, to try and warm them up, she said. She told me to try and relax and to take a few deep breaths. With that little bit of compassion from her, I felt a fresh stream of tears run down from the corners of my eyes. She told me that if I take a few deep breaths it will help the blood to flow better through my veins and that my blood needs oxygen to flow properly.
Every time I tried to inhale my breath kept catching in my throat, which in turn led to a small gasp to get it back. It took several attempts before I got a good breath in but it really helped. I had started to feel like I was floating away. After a few good breaths I started to feel the bed beneath me again and I could feel Jackie patting the top of my foot. She spoke and told me to, stay really still now. I instantly lost my breath again. I felt the needle pierce the top of my foot and she slowly went deeper. I heard the click of the release button, indicating the iv was threaded into the vein and could be released from the needle. It’s in, she said. You need to breathe ….
And that’s all I remember. That was around 11am on Thursday. The next clear moment was when I felt Zoey’s wet nose against my arm around 9am Friday morning. Ketamine has that effect on me. It tends to wipe my memory clean of almost everything for 12 – 24 hours following the infusion.
My head felt like it had been smashed against a wall when I lifted it off my pillow this morning. I did a quick body scan to see if there was pain anywhere else. Nope. All clear! The first 24 – 48 hours after my Ketamine infusions are the closest I get to being ‘pain-free’. Today offered little space to appreciate the low pain level though. It was a freaking emotional roller-coaster inside of me today. Tears began shortly after I got up. I was washing my face and noticed that one of my earrings had fallen out at some point. This big wave of sadness just swept right over me and tears started falling. Wasn’t expecting that!
A little while later I was laying back on the couch and David was sitting on the opposite end. We were watching an episode of Station 19 on TV together and there was an intimate scene between a husband and wife. More tears … and no words to explain.
And that’s how the day has been. Little random things causing waves of tears. I was outside planting some things my therapist gave me, and tears were flowing. I accidentally bumped my leg, more tears. David called out and asked me to come outside so he could show me something and I cried while I walked out across the garden. Then just before I got in the shower I sat on the bench in the bathroom and cried even more. Like seriously. There was no end to the tears. And it all felt like it came from a gut-wrenching sadness that had tremendous force behind it. It could not, would not, be stifled.
The day is over now. It is late, or early, depending on how you see 3am. I’m reluctant to go to bed, as I sometimes find being in a horizontal position also heightens my emotions. And I’m feeling pretty raw as it is. But we are going out of town tomorrow, for the night. On Sunday our God-daughter has her very first communion and we’d like to be there with her. My face is swollen. My eyes are bloodshot and puffy. And my mood is all over the place. But the very least I can do is attempt to get a few hours of rest. Even if that means just lying still, with my eyes closed, while my brain continues trailing off.
Stillness is not effortless for me. It takes work sometimes. Wellness takes effort and I’m trying my best to do what I have to do, even when I don’t want to. Do what you have to do to make it to see one more sunrise. 🌻
The family has gone to the rec center to decorate for the birthday party tonight. I opted to stay home with the dogs. They’re here beside me, soaking up all the different sounds and smells.
In-law’s backyard
Chronic pain is wreaking havoc on my body today. Despite being fully recovered from being crushed in a car crash in 2010, my left leg throbs with pain. From the base of my skull to lowest part of my back, burning, lava like sensations flow in all directions. It too has recovered, from the same crash, having been broken in 5 places. It once rendered me immobile but I proved medicine wrong and within a year I was walking again. But the cell memory remains intact and sometimes pain pulls me under. Especially in times of high stress. And today is one of those days. But I know that this too shall pass.
Having accepted that I can’t do and be like everyone else today, I’ve resolved to breathe and be gentle to self as much as possible. After everyone had left though, anxiety wrapped it’s ugly hands around my throat and with one quick gasp I began to hyperventilate.
My body trembled … sounds faded away as a high-pitched ringing appeared in my right ear. The intense pounding of my heart was making it almost impossible for air to reach my lungs. The pounding echoed through my skull. An overwhelming sense of terror seeped into every pore on my body, causing my limbs to go stiff with fear. I couldn’t breathe … I was being smothered. Where am I? This is not my house. I am not safe here … I HAVE TO GET OUT!
Frozen with fear
Suddenly, I didn’t know where I was. I heard something being whispered inside my head … he’s here. I felt my body begin to tingle, sending a shiver right through my very core. I had a sudden urge to rip at my skin with my fingernails.
I was losing it. My connection to reality was slipping away and I was drifting into another time and place. I was back in an experience that I didn’t want to remember. In someone else’s house. Under someone’s watch. Being stared at …
Mixed Reality
My current surroundings are unfamiliar and therefore intimidating and I think it triggered an emotional flashback. Being alone in this house gives me a very unsettling feeling and I felt like I was being watched. That feeling of someone staring reminded me of something else. And the thing about a traumatized brain is that it can’t tell time. Feeling this way today brought forth a memory of a previous time when I was being watched. It was not a pleasant memory and my body reacted as if this was that same time.
With both dogs at my feet, both recognizing the shift in my energy, we stepped outside where the cool air worked it’s way into my lungs. The change in temperature and lighting brought me back to now. 2024. My in-law’s house. It’s a safe house. This backyard is safe. Zoey and Buddy are just a few feet away. Look at them. It’s 2024. Its just the 3 of us. You’re OK …
The birds are chirping. I pick out at least 3 different songs being sung. Several little ones fly up from the ground at the sound of my footsteps and into a nearby evergreen, causing its current inhabitants to flutter off to the next tree. I scan the whole yard for potential areas of danger and once I felt relatively confident it was ok, I looked down at Zoey and Buddy and told them it was ok to go play. Off they ran, overjoyed with canine pleasure.
Buddy and Zoey
I wandered around the backyard, first focusing on the ground directly in front of my feet,as I needed the visual proof of what was around me. The sound of one of my dogs nearby, sniffing something of interest, reminded me of their presence. This caused a slight wave of relief to roll over my chest.
Last Year’s Leaf
I looked around at the trees and took note of a couple of dead leaves scraping along the ground in the wind. There was a fairly steady flow of traffic on the road out in front on the house so instead I headed further into the back of the property. I wanted to avoid the street to keep the dogs away from traffic, but I also wanted to avoid the stares from passersby, strangers to me, curious to see this outsider who was here in their town this weekend.
Zoey and Buddy, Bay Roberts, NL
I maintained the general route the dogs were taking, zigzaging all around yard with them until the shivering from cold was too much for my burning back to endure. I had accidentally left my jacket at home, tossed over the back of a chair … 5 hours away. Still not wanting to go inside I went in and added another hoodie to my current outfit then took my mother in-law’s red blanket from the couch. Now here I am, in the backyard, attempting to soothe my body as much as possible.
These attacks are draining.
Buddy BuddyZoey
I need to get ready for this evening. Attending this 60th birthday celebration is far outside of my comfort zone. But I feel obligated to be there. We don’t make it to see David’s family more than a few times a year and his family is very important to him. I would never stand in the way of that. Having had such an episode (I honestly don’t know what else to call it. Breakdown, maybe? Meltdown? Crash?) take place recently, David didn’t want to leave town without me. So I agreed to make the trip to his hometown for his mom’s birthday.
First I need to make space to breathe in some calm and exhale the overwhelm, as I sit here in the beautiful outdoors.
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!
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.
Her Complex Musings 
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