Chronic Struggles On The Daily: Behind the Scenes

And since all this loveliness cannot be heaven , I know in my heart it is June.

-Abba Gould Woolson

Chronic illness, pain and fatigue are each a full time job. Would you agree? I can sum chronic illness up in three words. It’s. Always. Something.

Today I would like to field such inquiries as the following: What do you do all day? You seem like you are fine, maybe you should start working. Why can’t you work part time? Maybe you should go to school while you are waiting to feel better. Be careful not to take too many medications!

I’m actually only on two at the moment but in the past I have needed more. And with each needed medication comes all the side effects. And by that I don’t just mean the ones on the label. I am of the opinion that those cautions should be followed by, May the odds be ever in your favor.

Diagnosis Denied: The Meds Maze

Chronic illness has no one-size-fits-all medication. It is not like a UTI with basic symptoms. Based on which we can diagnose ourselves. There is not a list of medications to try until we find one that wipes out all the bad stuff.

Alternatively, our goal is to manage symptoms through medication. Not all of the symptoms, mind you. But the ones with which we cannot function while they remain.

Unless you are also dealing with chronic illness you may not realize how frustrating medications can be. Here are some of the medication woes I have come up against:

1. medications that didn’t work, it would take weeks or months to find this out, starting with a low dose and slowly working up while a multitude of symptoms are ever evolving is relentlessly complex to track
2. medications that did work but were out of my price range through times that we didn’t have benefits, or often these experimental drugs are not covered anyway, also drug tests that are not covered by the province are out of reach (one in particular that may be useful in determining what I have is $4000)
3. then there are the fabulous medications that have been the answer to prayer, they finally gave me relief and hope; until they stopped working
4. when the end result of a medication to manage the pain made me feel worse than the actual pain we were trying to treat
5. the super fun times when I would react poorly to a medication that looked like it was working (any medication that loosens muscles is now on my DO NOT TAKE list)
6. there’s the ones that make me gain weight and feel like garbage
7. and the ones that make other conditions flare
8. and my least favourite of all, the ones that made me feel like a zombie, they worked but I hated them, the only thing that would touch the pain and I was treated like a drug addict when I would go to refill, but there were also no other options being found, let alone researched 😠

Doctor Who? Solving My Medical Mystery Solo!

Life is hard enough to navigate without chronic illness and its associated roles. Yet sometimes I don’t get to be the patient. I also have to be my own doctor. And patient advocate. And research assistant. Not only are these not paid jobs but they are also crossing the line of a patient-doctor relationship. Which is not appreciated in many doctor’s offices.

On some of my hardest days I have had to play both patient and care provider. I am blessed to have a family doctor at this time who trusts my judgment in my own care. He is happy to fill the supporting role. I wish everyone would be so lucky as to find such a person.

Sleep: My Part-Time Job with Full-Time Exhaustion

Ever since I can remember, I have wanted to go back to bed. While I’m having fun. Whilst visiting with people who energize me. Even after a good night’s sleep.

This is not the same as tired after a long day of living life. This is in response to waking up sick for years and years and years. And it is not tired. It is drained down to my bones. My reserve tank, my extra battery, my other 8 lives. All drained.

In my 20s I would get tired. I would be exhausted. Babies. Working. Home and family care. And then I would push through and accomplish whatever needed to be done. Spring cleaning. Painting a room. Grocery shopping. There was always something left in the tank when I thought I had nothing.

I am learning that a body living on the verge of empty is in survival mode. When I think I have energy to finish a task I am already on the last of the reserve tank. I just don’t know it yet. Chronic illness is about living in survival mode. And that takes constant energy.

Roadblocks and Resilience

My dear chronic comrades, it is okay to do less when you are dealing with more. Chronic illness has put us at a different place in life. And that is okay. I can struggle when I see people around me aiming high and accomplishing so much. But remember, we are not aiming low. We are not accomplishing little. We are aiming in a totally different direction. Which on its own is accomplishing much.

If you see me out and about. Chances are pretty good that I am pushing through. I just want to participate in life. I don’t want to miss it.

Note to self: it’s always a bad pop.

It’s been said that living with EDS is like living the day after a car accident in perpetuity. Some days are just a fender bender. Perhaps I could go to work after a fender bender. But many days I wake up after a head on collision. And even after my fender benders I have to plan ahead for the car accident to come later that day. I never know quite how bad it will be. I live my life on a roller coaster. Not a fun one. I never know when the next down is coming. Still sound fun? Forgot to mention, the roller coaster is on fire.

Joking about it is the only way of opening my mouth without screaming.

-Hawkeye Pierce

Peculiar Symptoms: A Comedy of Errors in Quality of Life

A person’s symptoms can be as varied as a fingerprint. Have you ever felt your hair hurt? Bugs crawling under your skin while simultaneously feeling sunburned? Loathed the need to talk on the phone? These are weird yet documented symptoms of just one of my chronic illnesses. Suffice it to say that pain is pain. And being in pain is about more than just being in pain.

Based on this quality of life scale. For the better part of part of 3 years I was at a 0. I have friends hovering around a 4. I have other friends living at a 8-9 and their body requires a 2. If you think everyone should live at a 10 with enough effort, you are wrong. Be grateful if you are at a 10. Look out for those anywhere else on the scale. This world is not made for us.

The Pain Paradox: Doctors and the Quest for Relief

There is not a good way of measuring pain. A doctor has to cause pain to assess it. Unfortunately for me, my pain would show up the next day after one of these assessment appointments. Long after the time for diagnosis had passed. I didn’t know how to answer the question,

Doctor: What makes your pain worse?

Me: This.

Doctor: You’re just sitting there.

Me: Exactly.

Doctor: Could you elaborate

Me: No, I actually forgot what I just said.

Eleutheromania: an intense and irresistible desire for freedom.

Have you ever wished you could escape your own body? Does it sound like freedom to picture taking off your body like a suit. Living your day. Then you could put the pain suit back on. Perhaps this is why other girls are delicate like flowers. While me and my chronic comrades are delicate like the claw end of a hammer. There is no taking off and putting back on. It is incessant.

A Plot Twist in My Story: Object Lesson

Chronic illness has become a big major focus of my life. I’ve been told if I didn’t focus on it so much, it would be easier to cope.

If you have big rocks and small rocks and sand. If they all have to fit in one container. What goes in first? The big rocks have to go first. If not, the sand and small rocks will take most of the space and the big rocks won’t fit. The sand and small rocks will fit in around the biggest rocks if those big ones are placed first.

The rest of the world has work and family and other big important things like church as their biggest rocks. Then they have other hobbies and interests that fit around those.

Most people cannot fathom having their health as their biggest rock. Their reality does not require it of them. When I put that great big rock in, not much else fits in my container of life. My health has to be my focus. But it can still be a beautiful life. I just have to work extra hard to make it that way.

Some people are under the impression that the longer you are sick, the easier it gets. Don’t you just get used to it? In my experience. No. The longer it has been. The further away the rest of the world can feel. Support people even start to wonder why you aren’t better. Hope is harder to come by. Hope for answers. Hope for the future. The more I try to catch up, the further behind I get.

The Tug-of-War Between Hope and Heartache

I have different needs. I need to rest after small tasks. I need to plan for outings to cost me. My mental health has paid a heavy price over the years and needs extra patience and work. Or dysregulation sneaks up on me. Flares that come out of nowhere need my focus.

Different things drag me down. I am dealing with the grief of losing who I once was. The recovery time it takes for me to do anything extra is hard to take and harder to explain. Believing I should be stronger. Self doubt. Physical, mental, emotional breakdowns. So much guilt. There will be more pain from now until I sleep. All of these and more emotions and feelings I can’t explain.

A disco ball is hundreds of pieces of broken glass put together to make a magical ball of light. You are not broken. You are a disco ball.

Take Two Forest Walks and Call Me in the Morning

I am not a doctor or trained therapist. But I offer you these prescriptions for the following maladies:

For overstimulation- An open sky

For irritability- your hands in the garden

For overthinking- waves on the shore

For disconnection- walk barefoot in the grass

For loneliness- stars in the night sky

For tension- a flowing river

For anxiety- forest air

For mental fatigue- a forest therapy walk

For burnout- listening to a thunderstorm

For lack of focus- the scent of rosemary

For confusion- quiet morning twilight

For inner chaos- sunlight filtering through the trees

For insecurity- the scent of cedar wood

For stress- the scent of lavender

For feeling stuck- hike a mountain trail

For grief- the scent of rose

For isolation- the sound of birdsong

My Daily Circus with My Inner Monkeys

I have often been asked what I do with my time. I know it has been asked with good intentions by my friends and family. They are not accusing me of anything but genuinely want to know what I do. I hesitate to answer because the list seems pitiful in this world of high achievers. But in an effort to link arms with my chronic comrades I share these parts of my day.

I spend time in my spiritual rituals and rhythms. I journal. I work on creative outlets. I spend time outdoors and get my skin in the sun. I do detoxes. I help care for our home as a means of functional movement. I practice EFT tapping and other energy work. I have days that I walk and days that I run. I have to keep moving or I quickly lose muscle. I spend time with friends who bring me up. And my little rays of sunshine (my grandkidlets). So. Many. Appointments. Then there are the high pain days. And the recovering from high pain days. And recovering from every time I go out. It is not the schedule I would choose. But it is one I will keep. I know the alternative.

The smell of moist earth and lilacs hung in the air like wisps of the past and hints of the future.

-Margaret Millar

I hope I have answered some of those questions. I invite you to enjoy your prescriptions. If you know anyone else that needs them, please share this post!