Can this invisible illness be our superpower?

Can this invisible illness be our superpower?

Belief in oneself is the biggest killer of futures

No one knows we are sick.
No one knows we hurt. No one knows the strength it takes to get out of bed, to perform a mundane task, or do even stand for a prolonged time. No one knows how to calculate the hours in a day, to divide and decide how much energy to expand and play with. No one knows how to allocate every single sip of water, electrolyte, and amount of food intake to balance our superpower. But we do.

No one knows our superpower. We have been told we suffer from invisible illness. That no one can see that we are sick. That no one can grasp how awful we feel because we look ok to the outside world. What is this superpower? It’s not invisibility. Guess again. It’s not our illness. Guess again. It is….

Resilience. No one knows what it takes to overcome these things day in and day out. No one knows how much we battle every day. No one knows the true depth of what we feel. No one knows how much mental stamina is required to hold this superpower. No one knows just how strong we are, how fierce we are, and how determined we are. We don’t stay down. We fight. We don’t give in. We battle. We are the strongest superhero out there in the world today. We have the power to overcome and keep fighting. No matter what. However, Our kryptonite is belief. If we don’t believe we are strong, or that we can overcome this, or that we will make it through the day, we will wither. Belief in oneself is the biggest killer of futures. You have to believe you will get better, and that the struggles are worth it. Keep the belief, and know that all superhero’s had powers that they had to keep hidden. It’s time to believe in you own powers.

Reclaiming myself from the grips of chronic illness

I just finished reading “Between two kingdoms” by Suleika Jaouad. While I can’t pretend I understand what it is like to live in the throes of cancer, this book resonated with me so deeply on a chronic illness level. Her struggle to acclimatize herself after she was in remission, captured my attention. This was where I realized I was struggling. Chronic illness unfortunately doesn’t have a remission button. And If it does, I have yet to find it. It leaves one standing alone, searching for the point of life where it all changed. Stuck in the abyss of before illness and after Illness. Mostly stuck in the before, not quite sure how to accept the new storyline that has been presented.

The before button

A button I have hit over and over again, and discovered it to be broken. It can’t be fixed or the batteries changed. It is beyond repair. I stand over and over staring at this word “before”. How it was, before. What I could do, before. How we were, before. Before before before. This button consumed me.

The now button

What have I become. How did I get here. Where do I go from here. How do I thrive in the now. It took 12 years to adjust to my life with pots, and now I struggle with an additional unknown diagnostic that has broken me down physically and emotionally. It has created a form of chronic illness ptsd. I am afraid to push myself. I am afraid to go to far away from my comfort zone or my house. I am afraid of triggering an episode or making my self feel worse. Every day is a delicate balance of getting myself upright, and when I do, I’m afraid of corrupting it. My fear has caused me to withdraw, and to say no, to not play, to not enjoy, and not fight. I battle my head. My head wins. Most of the time.

The change button

There comes a point where it’s no longer ok. I lost my career. I lost my sports teams. I lost my way. I lost my passions and drive. How do you find your way. How do You take the first step. How do You hit the change button. Illness impacts not only yourself but all those around you. The burden you create on others breaks you down emotionally. The example you make for others becomes a trail of anxiety. The need and desire for change occurs every time I make a list of how I want to change. And what I promise to do to change. But I gathered up scrap after scrap of promises and how to letters. The desire to change isn’t enough. You have to hit the button. You have to actually change. Stop the promises.

First step button

It might sound silly, but I bought a basketball net. I used to shoot hoops to relieve stress. I can’t run but I can stand still and shoot. Having your arms above your head with pots is not easy to do. It triggers my pots. But this allows me to build up my arm Strength while relieving stress. Stress for me is something that I have struggled to relieve. Pre pots I would hike or workout at the gym or take a boxing class and get out my frustrations. Without the ability to push myself and get my heart rate going, my stress has built and built to the point it had no where to go.

I also got an electric bike. I can now keep up with my kids. I don’t have to miss family outings on the bike. I can pedal when my tolerance allows, and coast when it doesn’t. I can build up my exercise tolerance without fear of getting to far away from the house or the car. My fears of never knowing when symptoms will and would hit, kept me from living and thriving. It kept me home and staying on the safe side. It kept my happiness at bay. I don’t have to worry with this bike.

Nect, I drove myself and kids to the cottage. Alone. No one else to rely on but my self. I am having to re learn how to build up faith in myself. I am having to relearn how to trust I’ll be ok. I am having to learn to take a chance. To do this, I am having to unravel years and years of chronic illness, ptsd m, and fears that have resulted from very real and scary hospital visits, or moments of pain and agony. It’s taking chances and finding my new life

It’s learning to knit. Picking up the needles and learning things stitch by stitch. Taking it one row and one day at a time. I may not see what it will become initially, but One day it will become something beautiful. Maybe not perfect. But it will be something i created because I tried.

When you don’t have depression…

When you don’t have depression…

I often feel down, yet I am happy. I often feel alone, yet I am surrounded. I often feel tired, yet I don’t want to sleep. I often feel empty, and yet I am full. I often feel broken, yet I am whole. I often want silence, yetI love noise. I want more, yet I also want less. I am full of sickness, yet I have so much health. I am not depressed, yet I do feel compressed.

I often notice that on many days I feel down, yet I know in my heart that I am not depressed. I have often thought to myself, how could this be? I don’t have trouble getting out of bed, or going to sleep. I don’t feel unbearable sadness, or lack of interest in things. All the typical symptoms of depression I don’t have, yet I still feel down sometimes. It took me a while to sort it all out, but I have come up with a self-diagnostic for myself, and maybe it could ring true for you too. I call it: my Compression Days.

The definition of compression is:

~The reduction in volume causing an increase in pressure~

What I have realized is that I start every single morning with a new lease on life. My pots syndrome resets itself every morning. So in the morning I start at 100% (kind of). As many chronic warriors know , for every activity we do, or stress we encounter, or ache we feel, we lose a percentage of that 100%. The goal is to manage our day, thus managing our symptoms, so we can get through the day somewhat whole. The same applies to those outside of the chronic illness world too. I like to picture a big pink balloon. Every morning I fill that balloon up, and place it in a vice. As I go about my day, each event either loosens the vice, or tightens it. If i feel a symptom of my illness, the vice tightens. If i feel stress from work, or school, the vice tightens. Financial worries, kids worries, pandemic worries, family worries, tighten, tighten, tighten, tighten. I feel it tighten all day long, to the point that there is no room for a calm, happy state of mind. The compression keeps building and building until I can’t take it anymore, and I burst.

I am sure many of you can relate. Maybe we yell at the kids or spouse more when it was completely uncalled for. Maybe, you end up crying in the shower, afraid to let others know how you are feeling. Maybe you walk around in a bad mood all day, or just feel angry. May you feel off, but you can’t quite figure it out. I have had many days like that. I felt like I was in a constant vice being squeezed, and I had trouble articulating that until just now. If I don’t manage the vice, then the vice manages me

How do we manage it then? We slow down. We surround ourselves with the right people. We do things every day that makes us happy. We workout, we take time for ourselves, we create an environment that eliminates stress, we meditate, we get outside into nature, we watch positive tv, or read positive books and avoid the barrage of negative social media. We do things for others, expecting nothing in return. We enjoy solitude. We enjoy company. We appreciate family. We appreciate what we have been blessed with. We work hard towards a goal that makes us happy. We give ourselves a reasons to live. We give others a reason to live. We make an impact. We are the impact. We create change, for happiness.

The less compressed I feel, the happier I am. I see that now. I decrease my stress, the lighter I feel. The lighter I feel, the more my mood increases towards happiness. The happier I am, the better I am for my kids and husband. Not being chained down to compression, allows me to get outside, read my books, meditate, and write. My happy places get utilized. I am allowing myself to dust off my happy place, and use it.

~It is not death that man should fear, but he should fear never beginning to live~

Marcus Aurelius

Compression allows us to live in anger and sadness. Loosen that vice, and live. Lose the anger, and sadness, and anxiety, and fear, one crank at a time. Go find your happy place, and just soak it in.

When the doctor is wrong

When the doctor is wrong

I sat on this for a few days and I debated on whether I would write about this. The reality is, I couldn’t justify not speaking up about this. I have worked in the medical field, and I have been on both ends of the world of medicine. I have been the person people turn too, and I have been the one turning to people. As those with chronic illness are acutely aware of, it is very easy to get lost in the system. It is a time consuming and painstakingly slow process to find a diagnosis. It took me over 2.5 years to get diagnosed with Postural Orthostatic Tachycardia syndrome. That was 10 plus years ago. I went from being an athlete, working a dream job, living it up……to barely being able to walk my dog without having to sit down and rest. My heart would race every single time I stood up. At the time, this condition wasn’t quite as recognized as it is today, so I didn’t blame the doctors who threw their hands up in the air with me. However, it was frustrating at the time because I was told that I was fine, that it was all in my head. Why? Because I was young, and healthy. I was told it was probably anxiety. Nope. I didn’t have anxiety. What I was anxious about, was why my heart rate was going wild. I knew something wasn’t right. No one knew me better than myself, and I didn’t quit until I had a name for it, and a treatment for it. I knew I would get an answer, and to be honest, I understand the health care system and that to have the health care in this country that we do( for which I am grateful), sometimes it is going to take a while. I am ok with that.

However, what I am not ok with, is waiting months and months to see a doctor that you hope might change your life, and having them treat you poorly. Having a doctor not listen, or brush you aside. Specialist need to realize that patients wait months and months with debilitating symptoms or illness, and so much hope lies on that one date that they have marked on their calendar. Hope is what keeps people alive.

Photo by Yelena Odintsova on

I had recently had my hope dimmed, and was treated poorly by a doctor who’s appt was etched in my calendar for months. An appt that I had hoped would bring clarity, and with that answers. As some people may or not may not know, for this past year I have had some medical issues popping up on top of my POTS diagnosis. It has been a very difficult year for my physically as a result, and I have been referred to a multitude of doctors, and I have visited the ER a few times. While most of the doctors have been great, and have listened and are genuinely concerned, I just met one this week that I just can’t ignore. This doctor, from the time I walked into his office, had me pegged. He didn’t care what I had to say.

Some background before I tell you about this doctor, I was put on a certain medication for my adrenaline rush issue that comes with PoTS. I wasn’t put on it for anxiety, but for my adrenaline. I used to get really bad rushes in the middle of the night, and this seemed to calm it. However, after 2.5 years of being on this medication(which is a short term drug usually), I had many different specialist recently tell me that I shouldn’t still be on it. Some wondering if it is causing some of my issues. As a result, I have begun the process of weening myself off of this. This type of medication is not a drug that you can just quit cold turkey without complications. It is a slow process.

This particular doctor didn’t care what I said, didn’t listen, didn’t ask, instead he just told me instead to double my dose of said medication, when I was having a flare, and to deal with it. I then informed him that I was weening off it and that I wasn’t interested in taking extra, and then I informed him that I am also extremely sensitive to that medication. I had once tried taking an extra dose, and it made me incoherent. His response to me was ” well, you’ll either be loopy or you’ll sleep it off. Either way you won’t remember your symptoms”. So just take an extra dose and deal with it.

I was slack jawed. I turned around and left his office. The fact that a doctor would tell me to take an extra dose of a medication that I was trying to ween myself off of, and to take a medication that caused me to become incoherent when taken in excess (I have 2 kids btw), was absolutely ludicrous. I have been in a personal hell for a year, with my symptoms. To be told to take a drug to make myself sleep or become incoherent, every time I have a flare (which is sometimes daily), is disgusting. Especially when I don’t have an answer for what is going on. I don’t want to knock myself out for the rest of my life to deal with this! I want an answer! I want a fix! I want to feel better! I don’t want to be doped up so I don’t feel anything! How this guy can call himself a doctor is absolutely gross.

Photo by Brett Sayles on

When I became a paramedic, I tried every single day to help my patients the best way I could. Doctors take oaths. When did oaths become less about fixing someone? I am someone who literally walks into an office and begs them to fix me. Whatever it takes, fix me. Don’t give me a pill as a bandaid. Doping someone up, is not fixing them. Tell me why this is happening, and tell me how I can fix it.

This process isn’t fun for me. Being in agony isn’t fun. Being scared isn’t fun. Not being able to do things with my children isn’t fun. Dealing with symptoms and waiting months and months isn’t fun but I will do it for as long as it takes if it means an answer. My hope lies in doctors. Every time I am told that there isn’t an answer, my hope dims. Every time that I have a flare, my hope dims. I will not have this one doctor dim me. I will fight. I will prove him wrong. Just as a did before with my pots. I know me.

I am thankful for a great family doctor who always takes the time to listen to me, and is constantly trying to find an answer for me. Cheers to all those doctors out there who have been great to me.

It just takes one doctor. One doctor who will listen, and think, and figure it out. One doctor. Thats all it took for my Pots Diagnosis, and that is all it will take now.

Sometimes, there just is no answer.

Sometimes, there just is no answer.

Sometimes, there just is no answer. You wait months and months for a consult, that you dream will magically solve all of your problems, and you walk away defeated. Sometimes there just is no answer.

You put your hopes into a specialist, that is trained, that is a guru, that is the saint in the profession of fixing any and all ailments, and you walk away defeated. Sometimes, there is just no answer.

You do what seems like every test known to man, and sometimes, there is just no answer.

Sometimes you have a diagnosis, for which there is no cure, and sometimes, there is just no answer.

Sometimes in life, there is just no answer. There is no magic potion. There is no magic guru. Nothing.

Sometimes, we just have to live with not having an answer, and build up from there. Make the most out of what we do have. Use what works, and be your own magician for your body. Fix it the best way you can, and find ways to cope. Try not to dwell on the bad, and focus on the good that surrounds you.

There is one answer to all of this. This is the life you were given. Find the light in the darkness. In an essay called ‘Blindness’ that I recently read by ‘Jorge Luis Borges’, he lectured on how the progressive nature of his own blindness, changed his own outlook on life. This man was a writer, who loved reading. His whole world revolved around seeing the written word. Instead of seeing what was being taken away, he chose to see through the darkness and find the light. He wrote, ” A writer, or any man, must believe that whatever happens to him is an instrument; everything has been given for an end. This is even stronger in the case of the artist. Everything that happens, including humiliations, embarrassments, misfortunes, all has been given like clay, like material for one’s art. One must accept it. For this reason I speak in a poem of the ancient food of heroes: Humiliation, unhappiness, discord. Those things are given to us to transform, so that we may make from the miserable circumstances of our lives things that are eternal, or aspire to be so. If a blind man thinks this way, he is saved. Blindness is a gift”.

Whatever affliction you may be suffering from, Chronic illness, Ptsd, Depression, Pain, it doesn’t matter. It doesn’t have to have a name. It just has to be seen as the clay you need to mold. It needs to transform. It needs to show you the path you are meant to be on, and it needs to not take another day from you. You are the artist. You create your life. You may not have control over what you have been given, but you do have control over what perspective you take. You can either mold that clay into one of despair, or you can mold it into one of triumph. You chose.

Sometimes, there is no answer. But you can control your own solution.