When I tell you I’m sick, believe me.

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This subject has come up a lot not only since being diagnosed but also since the pandemic.

Chronic illness is no joke.  There is this general conception that most chronic illness sufferers are faking their illness.   Well let me tell you something, it is the opposite.   Most Chronic Illness Sufferers are faking their wellness for you, for work, for family and friends.  This isn’t the first time I have mentioned this in a blog.   Someone who is sick will put on a show and act like they are fine because it is easier for others to believe so.   Most persons do not want to hear about the pain and suffering an illness causes someone day in and day out.   Acting is also a way of functioning .   Mind over matter.   “If I believe I can function today, I will function”.

Chronic illness creates Chronic Warriors who are lying to you about how they are truly feeling.   This is to protect you along with themselves.  This is to make you feel better and to avoid a great deal of judgment and expectations.   Everyone has an opinion about the sick and how they should care for themselves.  There is also very little empathy shown.    When you ask a  Chronic Warrior how they are, The most you will hear is “I’m tired”.    “How are you?” “Oh, I’m good.  Just tired”.   This is our catchphrase.

I struggle with not being authentic in expressing how I am really doing.  I am not just fine or just tired.  I am sick… every damn day.   Some days are better than others but there is not one day that I do not experience pain in some form.   Most times, that pain I can ignore and go about my day, functioning in Society and functioning with my family.   BUT there are times when I cannot function.  Where the pain is overbearing and I cannot put on a show.   This is when I do not hide or lie.  This is when I will cancel plans or leave early.  This is where I will terminate conversations and state: “I am not well, I need to go to bed”.  Not because I do not have time for you.  Not because I don’t want to be with you..  Its because I am not well and my tolerance for pain, for exhaustion is done for the day.  I have nothing left to give.

That is the whole truth and nothing but the truth.  I AM SICK and I need you to believe me.

Chronic Warriors want to be a part of events, gatherings, conversations more than anything.  They want to be independent and complete tasks for themselves.  They want to be a part of the workforce and family dynamics however for them to do anything, they must pay attention to their body.   When their body tells them, you’ve had enough or its time to shut it down.  Then it is time to rest.   If we do not rest, we could flare or even worse relapse.  A flare and/or a relapse has significant consequences and causes permanent damage.  Relapses can also spike risks of heart attack, strokes and other life-threatening issues.  Many autoimmune diseases are life threatening.

There was a time I attended my cousin’s birthday party.  It was a Saturday night, the night after I received my infusion.   I stayed late, well, late for me.  I had fun.  I socialized and celebrated.   When my body told me to go home, I listened and started to make my rounds of goodbye.  Many made comments of me being a party pooper and poop’n on the party.   BUT the worst was when I was outside leaving, my husband (who was significantly under the influence) got upset and said: “Why are you always ruining everything, why can’t you just stay and have fun?”  (insert eye roll -we already arranged I would go home and he would take an Uber).   I could hear his disappointment but at that time, it didn’t matter.   I had to go home.  It was time to shut it down.  For me to shut off and heal during sleep for the next day.

I am sick and I have to act like I am sick when my body has had enough.   When I am not well, I need you to believe me.

Chronic Warriors already push themselves to their limits every day by just functioning.   Cooking, cleaning, even hygiene routines cause pain and exhaustion. But we push through because we want to live normal lives.   We didn’t wish or ask to be sick.   It just happened.  It is not our fault.  If we had our way, we wouldn’t be sick.   We would give anything for a healthy body.

So the next time someone says, I am sick.  I’m not well.   I need time.  I need to rest.   Believe them.  Believing them is supporting them and helping them live anyway.

Change of Engagement

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There was a time that I would go out with friends or my husband and you would observe others looking at their smartphones. They were in the same place but they were not together.   A few years ago, we vacationed to Mexico for a wedding.  I observed a family of 4, rent a cabana bed and sit by the poolside on their tablets and/or phones all day.   No interaction with one another, what so ever.

Even I have looked at my phone during a night of socializing with friends and/or family.   My posts or a meme a friend sent was more interesting than the company I was keeping.   No really, but I have also been sucked into the screen.  Many a time.

Our internet interaction was a way to escape our overly responsible lives.   A way to escape our stresses.  At a time when we could enjoy face to face contact, we didn’t and now look.

All of our communication skills of face to face contact has been taken away from us and we are all struggling.  We are putting ourselves in danger just to make contact with someone… anyone.   Why???   because our internet connections to others are not satisfying enough.   As a counselor, I have been preaching this for some time.   As humans, we cannot survive without face to face engagement.   We cannot survive alone on written words and text messages.   We need to read facial expressions, verbal and nonverbal communication, to touch and to be touched.   We are learning now through this pandemic that we need interactions, engagement and affection to survive.

In the United States, 1944, an experiment was conducted on 40 newborn infants to determine whether or not individuals could thrive alone on basic physiological needs with affections.   These babies were separated into two groups- 20 in each group.   One group only received basic needs of feeding and changing. While the other group-housed in another room received basic needs and nurturing.   The experiment was terminated after four months.  More than half of the babies that received no engagement of communication died.  Two more died even after they were given all of the basic necessities including engagement.   Before each baby died, there was a period where they would stop verbalizing through cry to engage with the caregivers.   They stopped moving even.  They would die shortly after.   There was no physiological reason for their deaths.    It was as though the babies had “given up”.   The other children that received all ways of life had no deaths.

The conclusion was that face to face engagement and communication is crucial to the needs of humans.   I use this example often in counselling and in my private life.  I am not a fan of the experiment to say the least however it is a strong point in proving we need nurturing and affection to live.

Now.. I am a firm believer that if COVID-19 happened even just a few years back, without technology we would be in a much worse condition regarding any social contact however even with it,  we are struggling.    I am struggling.   I am an extrovert and I am a touch talker.   I communicate with all my forms of communication (verbal, nonverbal and touch).  I am also very social. I enjoy being with people.  I am a hugger and a feeler upper (take that as you will … LOL) and I am struggling without a doubt.   My soul feels odd and disconnected from others.

We all wanted some “US” time.  Some time off.  Some time to rest.  We didn’t want to be bothered by neighbors or people coming to our doors.  Long lost are the days of borrowing butter and sugar from someone close by.   We have isolated ourselves long before this virus.  BUT  when you remove our social choices and freedoms, we struggle.  Now I observe people talking as they pass one another by during their daily walk.   Now I observe communities coming together to help one another.  Now I see toilet paper being shared.   Now I see politeness and smiles.  Now I see respect for the elderly, and the disabled.

Now I see people seeing and missing other people.    So maybe… just maybe this virus is doing more good then destroying.   Maybe this virus is not only giving us messages about how we need to change the way we treat this planet but also how we need to go back to simpler ways of human contact…

Be well and Be Kind.  Stay home and Stay safe.

Listen. Can you hear her ?

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Shhhh, Listen. Can you hear her? She is speaking very loudly to us all right now. She is sending messages of change and she has been speaking to us for the last few decades. We haven’t been listening. She is upset with us. She is angry. She feels as though we have abandoned her. She is abused and screaming for help. She is now consequencing us and forcing us to listen. She has taken control. Can you hear her? 

We as human beings are not in control. We are not superior beings. We are not the centre of this planet. We do not own Mother Earth, Mother Earth is the Queen and we are to be her humble servants. But we haven’t been, we have? We have taken life on this planet for granted. We have forgotten what our ancestors have taught us. We have forgotten what they have fought for? FREEDOM… And I get it. Every generation wants more than the previous generation. We don’t want others to experience the previous hardships.  But at what cost?   We have become so materialistic that we have made monetary values more important than our earth mother. So now we are paying a very hefty price. 

We have pushed animals into seclusion and extinction. We have cut down and abused our vegetation. We have destroyed our waters and our marine life to make life easier for us. Now it is our turn to be pushed into seclusion and possibly extinction.   Are you listening to the message she is giving us all? 

So let me ask you, How’s your monetary value working for you now? We have the wealthy that are in the same vote as us – the working poor, the impoverished and the rich.  Right now we are all the same.

I ask myself, “how are those 300 pairs of shoes working for you now?” I am the most materialistic person. For myself. I do not judge others however here I am truly the working poor, the credit card junkie, who likes to pretend that I have it all and in the end, I have nothing but a closet full of stuff. Oh sure, my shoes are pretty and I look nice but does that save me from a virus? NO. Am I better than my neighbour? NO. Will, this virus choose someone else over me because I valued stuff? NO. It does not discriminate. We are watching the most wealthy test positive for this virus. We are watching the wealthy seclude themselves, just like us. Oh sure, they may have more room in their home, a pool, a hot tub, maybe someone to cook for them but in the end, their money ain’t doing shit in terms of saving them. The money will not save our species. Making lots of money is not the purpose of life. THIS IS THE LESSON…

It is attacking us because we are human. It is attacking us because there is a bigger lesson here. Mother Earth can wipe ALL of us out if she wanted too. Think about it. Just with natural disasters alone… we would be gone. She doesn’t want that. She wants us to live in harmony with our animals and vegetation. She wants us to help take care of her while we live among her. This planet does not need us to survive. This planet needs us to do better. We have failed our ancestors and ourselves. Our greed is going to destroy us. 

This did not occur because someone ate a bat. Who are we to judge the Chinese culture and who are we as North Americans to push our way of life onto other races and cultures. Many of us eat pig and many do not agree with it. Many of us eat goat and many of us do not. This was a freak accident. If you need someone to blame. Blame yourself. We have all contributed to this. Every. single. one of us. 

Life is about love, kindness, forgiveness, and strength. Life is about relationships and laughter. Life is about art and intelligence. Life is about valuing ourselves and reminding ourselves that we need to show gratitude to our planet by how we treat her. Life is about only needing the essentials to live it. We need air to breathe, but we pollute it. We need water to drink but we pollute it. We need the cycle of life but we abuse it. 

This is a hard-ass wake up call. We either listen now or we pay the price. We can do this. We can make these changes. We can give back while taking very little. We can change. There is to much love in this world to be lost. We have proof, changes will work. China had a blue sky when they were in seclusion. Venice had Swans and a dolphin come visit in a canal. Baby turtles are coming to say hello in small bodies of water in Florida.  The entire world is coming together, learning from one another and supporting each other.

She is speaking to us .. Listen. I’m begging you. 

We need to love each other more than we love money.

Be well.  Stay home.  Make changes.

One love…