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.
It all started when I went for my regular Ketamine infusion, which is part of my treatment for Complex Regional Pain Syndrome.
Felicia, the head nurse, asked if I was doing ok. She said I wasn’t looking like myself and that I was pale. I said I was good and that was all that was said.
I remember lying back on the stretcher while they prepped me, putting heart monitoring stickers on my chest, attaching a BP cuff to my arm, oxygen in my nose … I was shivering and could feel tears running down from the corners of my eyes but i had no emotions. It was strange because that doesn’t usually happen. They took my hand to start an IV and I heard a faint voice in my head whispering – don’t touch me.
I remember turning my head to the side and just letting myself drift away. Don’t have any more memories about the treatment than that.
Once the infusion was done they wanted to talk to David. Felicia asked him how I’ve been doing lately. David later told me that he told her I’ve been purging a lot, that I’ve been quite depressed and that he’s been worried. Apparently she told him that I’m not looking well. That I was pale, my eyes were dark, and my lips were almost grey.
I was awake, my eyes were open, but I was non-responsive. My neck and head were spasming and I was staring off with no reaction when someone spoke or touched me. So they decided to keep me an extra hour to give me more fluids and more time to let the meds wear off. David asked if they felt I had taken anything and she said no because my vitals were all good. But they did bloodwork just to be sure.
An hour later Felicia called David back in and told him that he needs to take me to the ER. Apparently I had been mumbling some things that no one could really pick out but Felicia had heard me say something about this being the end and it was almost time to die …. I don’t remember any of that. I’m just telling what I was told.
So they put me in a wheelchair and David registered me in the ER, where I sat/slumped for 9 hours. David said I kept falling to the side as if I couldn’t hold myself up. He had to ask for a pillow and blanket to put around me to secure me a bit. He said I was in a completely different world.
Then they called us in to a small room that had nothing but 2 chairs bolted to the floor. And that’s where I spent the next 26 hours. It was nothing short of brutal.
Tears are burning my eyes now as I write that. I think it’s cruel how this was handled. They took me from the OR after having a procedure done and forced me to sit up on hard seats for a total of 36 hours. I was hallucinating. I was in terrible pain and developed a migraine. Had multiple bouts of vomiting. And I started experiencing opiate withdrawal because after I took my meds Thursday morning, I wasn’t given anything until Friday night. By that time I had missed 6 doses of morphine. It was torture.
David had to leave at one point. We had taken our dogs with us that morning. So David spent the entire day going from me in the hospital to the dogs in the car. He’d switch every hour. Take them for a walk, a drink, get them a snack then settle them in the car again before coming back in with me. But they couldn’t do that all night. So around 10pm he spoke to the staff. They assured him that I would be in safe hands and would be looked after so he left to go home with the dogs. Just before he left, he brought me in Zoey’s blanket from the car because he’d been asking for a blanket for me for 2 hrs with no luck. So I just kinda dozed off, sitting up in the chair, with Zoey’s blanket over me.
At one point I started to be more alert and I was really confused. I needed to use the bathroom but there wasn’t one so I left the room and just wandered around a bit. I went to the nurse’s station and asked if there was a bathroom and he said down the hall on the right. I roamed the hospital for a while. Took the elevator a few times, and eventually made my way back to that room. I called David, upset, wanting to know what was going on. When he realized that I was still there in that room – alone, he drove back to Grand Falls again at 4am. In the meantime, while hyperventilating and being trapped in that space with the chairs bolted to the floor, I clawed/scratched/cut my neck.
David came, and he channeled his anger into fighting for me. He took me outside for some air then went and found a vending machine and got me a sandwich and water. I hadn’t had anything since 7am the previous day. Thankfully there was one nurse there on Friday that had a bit of respect and showed some compassion. She even gave me a little bit of her on personal toothpaste so I could brush my teeth. No one gave me a breakfast tray but she made sure there was one for me by lunch time. And she also contacted the necessary ppl to get my meds ordered.
Then my psychiatrist came. It was still another long painful day sitting in that chair but by Friday evening I was admitted to the psyc unit.
And I’m still here. I am much more stable than I was over 2 weeks ago but still have a ways to go. Have no idea what is going to come out of this.
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.
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.
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. 🌻
Her Complex Musings 
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