I had been attempting to be more authentic in how difficult my days can be with two invisible invisibilities like complex-Post Traumatic Stress Disorder and Ehlers- Danlos Sydrome. It’s in my nature to focus on the positive and underplay how hard things get.

I get behind that philosophy, however I have been in a flare up state for several months now. If I’m honest I haven’t spent much time out of a flare up for several years. I’m tough and I’m strong and I’ve been working on self-care for fifteen years. But when the pain/nausea/brain fog/core spasm/exhaustion cocktail kick in, all my years of self-care expertise go out the window. I barely know who I am. I have no bandwidth to handle any experiences. My focus is entirely on trying to breathe and get from moment to moment. The world is too bright and loud and I am in more pain and discomfort and past the point of exhaustion many times more than I thought my body, spirit and soul could take.  

The other day I was chatting with a friend who asked how I was. I said “things were hard and I’m in a flare up and that in this moment I feel better.” That was true, and me still trying to be positive. For a few moments I could breathe and think while I was answering her message. Directly afterward my chest started to cramp up and I doubled over onto the floor. My diaphragm cramped up and I felt like my whole breathing system was cramped down. I felt like I was drowning. I was sure I was going to faint. At least I was already on the floor.  My friend well meaningly wrote back “I’m glad you’re feeling better!” I wondered how I could have given such a wrong impression. I don’t want to keep repeating “I feel like I’m drowning. The nausea takes up all my bandwidth. I can’t lift myself up. I can’t take the pain but each day it’s escalating. I can’t take the overwhelm. It’s scary each time my cognition drops out and I am floating in a wordless place of fear and pain and overwhelm”. I want to write another script for myself. 

I have a huge art project in the works, and I have only a faint sense of it happening. I don’t know how any human being can stand this place. I can get incredible amount of work done in say in one hour on a phone meeting. And then loose the rest of the day to just getting through intense symptoms. 

I’m sure some version of this feels familiar to many with chronic illness. 

These are versions of sensations I’ve had my whole life. I told my doctors and gym teachers all these feelings as a child and it was always put back to me that it there was nothing wrong with me. And if there was, it was my fault. I was lazy, I was told I didn’t want to participate and that I was weak. My digestion was poor; therefore, I must be eating poorly. No one asked me. They told me how it was. So as a child I stopped feeling the pain and just internalized this feeling of extreme overwhelm as failure. I was weak. I was lazy. It’s my fault. I must not want to participate. Adults asked me “What kind of kid is tired all the time?” I didn’t know but it made me feel like there was something wrong with me.  I could fall asleep anywhere as long as my torso was resting on something. And I was in this alone; I had to figure everything out.  I had to show the world that I wasn’t lazy. So I buckled up and internalized this incredible difficult experience of living with a connective tissue disorder.  It took seven years of intense therapy for me to be able to locate the body feelings I was suppressing in order to get by. Once I opened myself up to feel the sensations, my life got more difficult but the road toward healing could begin.  

So the best thing I can think to do is to record a day in all its agonizing glory, in order to honour and sit in the feeling. To be truthful about my experience and to let other folks in similar positions know they are not alone.  And honestly, this is what my days have mostly looked like for maybe two years. If I say I’m better I am faking it to some extent. All the time. 

So I’ll start recording my today. I’m two weeks away from opening a show called Intangible Adorations: Experience The Icon. I think it’s the best thing I’ve created to date. It’s part of a festival called Rendezvous With Madness, a peak artistic experience for me. I often hide in my art practise. It brings me joy and is what I’ve been using to hold on my whole life. I have can have a brutal day and then have some good news about the project. I can enthusiastically talk about the project news for a short while and pretend the rest of the day away. 

Dear Diary: I wake up in the morning and my first wave of nausea and emotional overwhelm engulfs me at the in-point of consciousness.  I realize I’m awake and often my throat tightens with overwhelm and I feel tears tickling my eyes. My first thought is “I’m not sure I have the strength to do this again”.  I move a little bit to get the sense of where my body is at. I breathe in deeply and my torso cramps and spasms and tightens around my diaphragm. I do my best not to panic when I can’t take in proper breath. I imagine releasing my shoulders and try to picture butter melting. Sometimes this helps me, this morning it starts the feeling that there is a burning tight knot from my left ear that burns through my body stabbing like hot metal though my lungs and it grabs onto my lower hip. This tightness cramps into a searing pain and if I think about it too much, it gets tighter. The more I try to relax, the tighter it gets. It cramped up my already immobile digestive system into another level of cramps. Breathe… no no no, don’t cramp up more.  I lie still hoping to get my breathing better before trying to sit up. I find a moment between cramps to sit up. I feel faint, I tear up with overwhelm. I use a roller to help me sit up. I feel faint again. My fingers and toes tingle and go numb. I breathe in again and slowly roll to my left toward the edge of the sleeping mat. My torso muscles scream in cramp-y pain, and I feel like I don’t have it in me to move or get upright. The pain and tightening is increasing, I must get up before I go into full spasm. I breathe in again reminding myself of the steps.  Roll over. Sit up. Stand up. Roll over. Sit up. Stand up. When I am this overwhelmed I lose sight of what I am doing mid action. I am out of gas, my body having exhausted itself already. I roll. I wait. What am I doing? Lying on my bed feels overwhelming as it feels more and more uncomfortable.

My thought cramps tight and it feels like there is a thread from the top of my head yanking a cramp into my chest. My heart races, I feel like I’m breathing though clay. I have to move.

I test my knees and stand up wobbly like I’m an extremely old person leaning on the wall. I catch my breath. My psoas tightens and spasms tucking my tailbone under which feels like hot metal. I try to stand up straight and support myself on the wall. I feel faint. I can’t breathe. What am I doing? Standing up. Another wave of nausea hits me and my sense of smell intensifies. I can smell the garbage in the kitchen and it makes me wretch and my mouth fills with saliva as it feels like I’m going to vomit. I can’t breath in as I’ll get more smell and more nausea. I rush to the back door and stick my head outside. I try to breathe in fresh air and the physical exertion of getting my body to the back door has my vision going spotty. I feel like I’m going to faint. My knees buckle so I hold on to the doorframe. What am I doing? I don’t know. 

I can’t get a deep breath. I am exhausted beyond belief. I can’t catch a breath. I feel like I’m drowning.  Slowly trying to move my body, which feels like cramp-y painful tightens that somehow keeps increasing past what I think I can take pain wise.  Now my upper back begins to spasm, and burn. I try three breaths, try to not cry from the overwhelm. My body doesn’t feel strong enough to get itself up from the floor. I feel like I have just run a marathon and written an exam. I am depleted mind body muscle and soul. I feel like I can’t do even one thing.  I’ve been conscious for maybe ten minutes this morning. 

When I think of tasks that need doing I get waves of panic that electrocute me to a place brighter than pain. My heart races, my hands and feet tingle sometimes I have coughing spasms. I was in trauma therapy for seven years at Women’s College Hospital in Toronto and learned how to lessen panic waves. These current ones are based in that I don’t know if I can complete any task, no matter how small. I am like a toddler with a bad flu and I’ve been asked to drive a truck while explaining a complicated subject. There is no way I can execute what is asked of me. Through determination and craftiness I manage to still get some things done. With a lot a help and a super human amount of effort execution help and planning.  

I put three towels in the laundry and I am fighting for breath. Bending over has me feeling faint. The tasks of soap, fabric softener and closing the lid have my fingers popping out of their sockets, and then I have to lie down on the floor to rest before climbing the ten stairs. The floor is freezing and hurts my back, I have no choice but to rest, maybe five minutes until I know what I’m doing and I have the strength to stand again. I crawl up the stairs and start making coffee. With sky-high nausea, coffee cuts my nausea most days. Making the coffee is challenging. I start by assembling beans, grinder and cup. I have to squat on the floor as the effort has started tears flowing down my face. I don’t know if I can do this. What am I doing? Making coffee. I stand up and pour my coffee beans. The grinder feels far too loud and is over stimulating my worn out senses.  I grind and then feel faint and lie down on the kitchen floor. Maybe I don’t need coffee I’ll just go back to bed. A wave of nausea comes over me. I can’t stand up. My mouth fills with saliva and it feels like I’m going to throw up. I walk a circle in the kitchen reminding myself who I am. Why I’m here and that coffee will make me feel better. I try again. I get the water into my cup. My wrist gives way and I drop the cup. Bending over to wipe up the water has me faint. I feel my system trying so hard to shut down. I don’t know what I’m doing. I smell the coffee beans. I fill another cup. I hold the cup with both hands so my fingers don’t give way. I get it into the kettle. I lie on the floor while it’s boiling. 

Left side of my hip flexor seizes up painfully and I’m on the floor seized over to one side. I can’t stand up all the way and the pain is so intense I feel I can’t breathe at all. I feel faint. My fingers and toes are tingling. I crawl to the fridge to get milk and a Banana Bag hydration pack. I get my milk into my coffee while doubled over and squat to try to relieve the pain. I sip my coffee but it doesn’t bring me the taste joy I’m hoping for. I taste nothing and gag. I feel like all that effort was wasted. It doesn’t even matter if I make coffee. Maybe I shouldn’t have even tried.

Then a temperature control flare starts. My hands and feet turn to ice and my core muscles start shaking. My teeth rattle together. I get so cold I am shivering and shaking. I feel like I’m faking it the way it shakes me like a rag doll. Then the chill turns into a heat flare. I am still shaking and then I start to sweat. I can sweat through several layers of clothes and then the cold sweat brings me to a freezing place when bedding and clothes are wet and cold. Sometimes I’ll have two or three temperature control flares in a row. These are one of the most exhausting experiences. And it’s gross. I’m soaking wet with drops pouring off my face and I smell like I’m in deep distress. I don’t know what’s going on but I know I can’t take it for much longer. 

I get a small wave of what feels like appetite. I have a paralyzed digestive system with EDS. I walk into the kitchen thinking I can make toast. I pop a piece in the toaster and lean on the counter for support. I feel faint; I forget what I’m doing. Toast pops up. The smell of the cooked bread brings on a wave of nausea and I double over. I can’t even butter the bread. I’m wrenching from the smell of the bread and butter and wretch into the sink. I know I can’t eat the bread and recycle it. I’m sad how much food I can’t eat. I’m malnourished with a protruding hard extended belly. 

There is an ongoing panic if I have any responsibility. I don’t know if I can do it. If I can get anywhere, or commit to anything but lying in my bed. Often I don’t know who I am or what I’m supposed to be doing. My hips, knees, ankles give way. I walk into things and walls, I feel like I’m just about to go down. If I’m carrying something I drop it. I barely feel like I can stand up for a few minutes. The idea of going to the streetcar stop has me in tears. Travel is so difficult when a system is shutting down. It takes it all out of me. When I am out, I am probably faking it to some extent. There are pain waves I pretend aren’t there. I don’t know what’s going on. I don’t know why I’m here. I’ll make eye contact and smile. I am beyond exhausted.  I am a smartphone with 4% battery left and I’m forcing it to run large apps. It won’t go. It’s can’t go. It’s too much.  I collapse to the kitchen floor.

A friend checks on me and picks me up some groceries. He walks my dog. I lie in by bed with my eyes half closed trying to release the insane tightness and muscle cramping in my body. I think I want to go outside. Just to the coffee shop at the end of my street. I’ll get dressed and go out. Even just ten minutes. I stand up to get dressed and feel faint. I start to put on pants and the act of lifting my legs takes everything I have. I realize the towels are still in the wash. Moving them to the dryer has me lying on the floor again. I put my pyjamas on and crawl back up the stairs. I’m not going anywhere. Instead I open my back door and try to get some sun on my face. 

To add some context, I used to run a film production company and ran complex creative projects. I am an extremely organized reliable person. It was not uncommon for me to work 16-hour days. So this experience is far from who I am and what I’m used to. Now I can do one small thing every two days. I’m extremely self-sufficient. It is humiliating to let people know what my days are like that I don’t know for sure if I can do something. If I try to do too much then I loose additional days. And the more I push the less cognition I have and the scarier my life gets. It’s a constant free fall and I don’t know what you’re going to get every day.  It’s hard when people refer to me as having “Time Off”. 

There is deep burning pain in my whole body that is eased by compression items. Today I’m too exhausting to put these on, and if I have a sweat out in compression items they get soaked and then they are harder to remove.  I think I’m disassociating when the pain gets too intense, and I lose time and feel like I wake up sometimes and suddenly have enough bandwidth to be aware of my environment. Sometimes I’m on the floor or I suddenly I’m on a streetcar. I don’t know what I’m doing. Sometimes it’s the automatic pilot of my life. I’m scared almost every day and I am so tired. I wouldn’t trust myself alone if there was any other way. And it’s weird to be so open about how impossible my days are.

I have been told I am currently too healthy for assistance. In the past I had an occupational therapist, a mental health nurse, a house helper and a caseworker all coming to the house. With four helpers I was ok. Now I’m told I am too mentally healthy for this help (and some has been cut by out government). And I have been told I’m not disabled enough to get in-home help. I live alone and sometimes have days lost in a pain haze, mostly lying on my floor.  I was able to get grip bars installed in my bathroom, which makes me less scared to wash when I have the strength.  I do have a lot of friends and family who chip in and help out a lot.

The anxiety around running a performance workshop and a large-scale performance when my pain is so severe makes me feel like I can’t hold on.  It’s scary and hard and I realize I have to tell the truth. So yeah my career is going well and I know I can look young and fresh and I have a lot of enthusiasm for my art. I need to be truthful that as well as that, I am barely holding on. And it’s been like this for a long time. If I say I’m feeling better, I’m telling you a version of the truth. And it might only be better for five minutes or an hour. 

So I am writing this out as a blog post because I needed another way to process this. I have been on a waiting list for the GoodHope EDS clinic since last January, and we’re hoping I get in January 2020. 

My show opens in two weeks, and I have to get to rehearsal this afternoon. I am so blessed for my incredible creative team headed by Scott White. Many of those on my team are volunteers, and they help me keep my creative vision online. Since I am in this much pain and cognitive distress, I guess that it is a miracle that the show will go on. Art saves my life every day. And everyday I hope for some relief. 

If you want to see what kind of a show someone with two invisible disabilities puts on, check this out. Get your tickets if you are in Toronto October 12-19 2019 https://workmanarts.com/rwm-events/intangible-adorations/

www.broadwayworld.com/toronto/article/Celebrities-In-Disguise-Tackle-Mental-Health-In-INTANGIBLE-ADORATIONS-EXPERIENCE-THE-ICON-20191001

Tags: art therapy, rendezvous with madness