Chronic Illness, Postural Tachycardia Syndrome, and making life after 40 Awesome
I am 41 years young, living with a Chronic Illness called Postural Orthostatic Tachycardia syndrome. With all the craziness going on in the world, I wanted to create a blog that embraces love, humour and shows everyone that we are all in this together, we can help each other, and we are all living a normal life that doesn't need to be enhanced with filters all the time
This past year has been trying for everyone. The pandemic has pushed us to the brink and back again. It has taught us to cherish, to fear, to love, to lose, to guard, to distance, to yearn, and to find again. And, it created my favourite thing of all. It created a new generation of outsiders.
I imagine that when god was looking down at the world, all he was able to see was the backs of peoples heads, eyes down at the screen, forgetting to look up once in a while. I imagine him just shaking his head, while he was trying to sort out how to snap everyone out of this virtual world. How could he get us back into the land of face to face communication, face to face playing, and giving people undivided attention? How could he teach us how to remember what it felt like before screens took over our lives? Was it possible to capture the worlds attention and reverse the clock and remind everyone what life was really about?
I don’t think anyone ever predicted the world coming to a halt. Borders closing. Lives shutting down, and walls being put up around everyone’s friends and family. Isolation. Desperation. Alone with out selves, our thoughts, and our families. The initial burden, and fear, however eventually gave way to what I call the outsiders. People started putting down their phone, and opening up their hearts. They went outside. They talked, they played, they walked, the found their voice. They looked up at people and said hello. Bikes, rollerblades and scooters were dusted off, balls were kicked, and chairs were put out on the front lawns to meet safely with neighbours and friends. Time became cherished, a hug given new meaning, and the simple things found new enjoyment. Picnic blankets are finding new grass, and memories of outdoor chats in person are being remembered. Appreciation for family, friends, and how easy we all had it before is becoming known. Parks, splash pads, sprinklers and pools, finding new feet to frolic around in. Future vacations being planned and not taken for granted. Bbq’s and parties and family dinners no longer a burden, but appreciated that we were lucky enough to have been able to do those things. We became outsiders again.
Lock-down has brought on a hope for better days, and for a day when we can do of those things that we never gave a passing thought too. Things that were taken for granted, now have new meaning. I believe that through this pandemic, God was able to get us all to look up, and he now can see our faces. We see everyone around us now, and we see this beautiful world and life that has been provided for us. Our eyes have been opened to what we refused to see before, and to what we need to see now. My hope is that we continue to look forward, and that we are able to always remember what we lost. I hope that our phones stay down a little longer each day, and we remain outsiders forever.
I choose the man in my life to be someone that is the yin to my yang. I worry about everything, he worries about nothing. I freak out, he is calm. I and in pain, and he runs laps around me. He is loud, I am quiet. He loves to party, I love to be a home-body. He loves action, I love the simple pleasures. Yet, somehow we balance each other out. However, when I was pregnant, and in labour, this yin of mine pushed me to the brink!
After being in labour at home for hours, I hit the point that it was go time. My contractions were very close together and I was in a world of pain. I woke him up and said we have to go. I waddled my way down the stairs with my hospital bag, and sat down. And waited. And waited. And waited. Breath breath hoooooha….breath breath hoooo ha….where in the hell was he. Breath breath hoooo ha. Then I heard it. The shower was on. Are you bleeping kidding me right noooooooow? breath breath hooooooha….breath breath hooooooha. What you should also know, is that the other part of this yin and yang situation that we had going on here, was that during that time, I was a paramedic, and I had a strong sense of urgency with emergency situations. If there is an emergency, and I am up and out the door, springing into action. He on the other hand, has zero and I mean ZERO sense of urgency……he just doesn’t rush anywhere, doesn’t see the need. Things don’t phase him. I should have known. Ok, back to me sitting on the stairs in active labour , and he is taking his sweet time taking a shower. WHAT! If I could have waddled my big self on up those stairs, I would have …..but I couldn’t……so I sat……breath breath hooooooha….breath breath…I am going to kill him…..breath breath….where the hell is heeeeeee…..breath breath hoooooHAAAAA!
So he comes down stairs, and If there was a stare that could have killed, he got it. He simply replied, “what? We are going to be at the hospital for a while and I needed to shower”. Um what? Do you think I am worried about showering myself right now, let alone you!! You know, I have watched movies where the woman’s water breaks, and the man runs around all crazy, unable to function…..and then is out in the car in two seconds…um no…..we did not have that problem here. So here we are at 2am, we get into the car, and start driving, there are no cars in sight, and he is driving slower than the speed limit. I am screaming in pain, telling him to hurry up, and he said he doesn’t need to get a ticket. I look at him, this is the man that probably had 3 speeding tickets this year alone and now he doesn’t want to get one! I tell him, I am sure the police will understand when they see the babies hand waving at him from down below! Good lord! We sit at at red light, for two minutes….breath breath hoooha….there is no one around…it is a ghost town….breath breath hooooha….
We finally make it to the hospital, he parks underground….there are 5 spots in front of the elevators marked labour and delivery. 3 of those spots are empty. He decides to bypass the spots and park another 6 or 7 spots away. I shoot him a look and say….what the hell! Park in those damn spots! He said, I would rather save them for someone that needs them. Im sorry, rewind…WHAT!!!! I AM THAT SOMEONE!!! I am in active labour, the baby could probably speak four languages by now she was sitting so low at this point….. If I wasn’t contracting, I would have…breath breath HOOOOOHAAAA~~! I still don’t know what possessed him , and what made him think that way…but I like to pretend he was in shock…but I know deep down that wasn’t the case. He then said…relax, I am sure there is a wheelchair. RELAX? UM WHAT? Did I hear that right? Well I am sure you can guess by now, there wasn’t a single wheelchair in sight….so I waddled the distance, cursing at him under my breath….all the way to the elevator. The doors open, we get in…and its the type of elevator that has mirrors all around, and it looks like their are 100 of you staring back….well …he got 100 of me GLARING at his dumb self. breath breath HOOOOOOOHA!
I would like to say that we got up to labour and delivery and everything went smoothly…but after like 20 hours of labour,( she was stuck with the cord around her neck, and we ended up having to do an emergency procedure), well, he by chance, took a break, and went for a coffee and almost missed the birth of his first born. Breath Breath HOOOHA!!
of humanity forgetting we are all the same on the inside
I am exhausted
from the storm
I am exhausted
because one way is too much, and the other is not enough
I am exhausted
from raising kids to be polite, to appreciate a door held open for them, to accept help, to see people and not colours, to not judge, to accept, to be kind, to help others, to work hard to get what you want, to learn that life doesn’t hand you freebies, and that it is ok to be upset that change takes a while
I am exhausted
because I choose to be a women that loves when a man wants to help her, because I am a women that loves to help others, because I want to raise my kids to have the morals and values I grew up with, because I value putting the work in to gain the respect of others, because I want my kids to say thank you, and hello, and to offer help to those in needs.
I am exhausted
But you know what? The human I will be, and the people that will surround me, will be gracious, compassionate, giving, kind, accepting, and polite.
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~
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.
Although Audrey Hepburn is famous for her iconic look and fashion sense, what I have learned to love and appreciate about her is that she had this unflappable ability to stay true to herself, and to be ok with making choices that might not always line up with what society feels she should do. She left Hollywood at the height of her career to spend time with her family. She knew what was important, and the spotlight wasn’t cathartic to her.
She knew what she had to do to find happiness, and while she struggled in some areas of her life, she always found a way through it. In the end, she learned to find happiness in all areas of her life, by starting with herself.
I have struggled over the last few years to find my footing. It is ingrained in myself and most women that we put others ahead of ourselves, and that we need to have the perfect kitchen, the perfect meals, the perfect bodies, the perfect kids, and the perfect life. However, that isn’t what life is about! I have spent far too much time, trying to appeal to those outside of my home. Why? Does it matter what others think of me? Do those people ever set foot in my house? Is having the perfect bikini body worth 10 months of starving myself, just to hear the words “wow , you look great”? No, it really doesn’t matter. It is time that we do things to make ourselves feel good on the inside. If having a clean house makes you feel good, then clean it! But do it for you!
I often run myself ragged trying to have everything perfect. Will my kids remember the clean house and mom saying no to playing with them? Or will my kids remember a house that was lived in, and mom chased them around the mess trying to tickle them? Which leads me to this quote from Audrey:
“There is one difference between a long life and a great dinner; in the dinner, the sweet things come last.”
This quote stopped me in my tracks. The sweet things in life are happening all around us, each and every day. We have to start being more present, and start noticing and appreciating the things we have in our life NOW, not yesterday and not tomorrow. NOW. I often read books from Deepak Chopra, and the one thing I have learned to do to be more present is to stop, bring awareness to my beating heart, and start to listen to all the sounds that are occurring around me. Open your eyes to all the things happening, like the trees swaying in the breeze, the bird flying by, and to see the life that is happening right now in front of you. You don’t want to reach the end of your life, and look back and realize that the entire time, you had everything you were searching for but you were blind to it all.
” I have to be alone very often. I’d be quite happy if I spent from Saturday night until Monday morning alone in my apartment. That’s how I refuel.”
I have learned recently that I have a need to have moments of solitude. I have been feeling guilty about this feeling for a while. During this pandemic and subsequent lock-downs, I have not been able to work and my girls are being home schooled. This has left very little opportunity for me to take time for myself. With my health, I haven’t wanted to go out to any stores, and have tried to limit my social contacts with those outside of the home, so I do feel that it has impacted my health in some ways. The guilt comes out of feeling that I should have more gratitude for being given all this extra time to see my kids, and for having a roof over my head, and food in my belly. The guilt comes because for some reason, I haven’t felt like I was allowed to have this time. However, the more I spread myself thin, the more cranky I was getting. The more days that passed where I didn’t allow myself time to meditate, read, write, do yoga, or do things to advance my own health, I felt more sick, more unbalanced, more rage. Yes I said rage. I found myself being short and curt with my kids. I found myself irritated with my husband, and irritated with life around me in general. I was more pessimistic, more angry, more unhappy. When I heard this quote from Audrey, I felt validation. I felt that it was OK to need time alone. When she said that time alone was how she refueled, I felt this light go on inside me. That is how I felt. She wasn’t afraid to say she needed time. Why was I so afraid to ask for time? Why was I so afraid to admit that I need that time too? Why did it take me so long to realize that I needed to refuel. I created a space in my house to do that, and I wasn’t using it. I realized, that I needed to take this time, so I could be a better mom, a better wife, a better version of me. I needed to refuel my soul.
“For beautiful eyes, look for the good in others; for beautiful lips, speak only words of kindness; and for poise, walk with the knowledge that you are never alone”
~Audrey Hepburn ~
The way to true beauty, is through kindness, and seeing the best in people. It is time we start talking about the good we see in people, instead of the bad. It is time that we see beauty as more than just the shell that holds all of our souls. With so much bad going on around us, we have forgotten that there is still a lot of great things going on. Audrey lived through the war, and waiting on the other side was humanity wanting to help and fix all the bad that had occurred. We will get through this pandemic. There is a lot of good waiting for us on the other side of this. This pandemic has taught me to value those in my life, and to return life to the simple basics. Sit and talk with someone you love, hug someone you love, play with someone you love, and listen to someone you love. That is all we crave isn’t it?
“As you grow older you will discover you have two hands. One for helping yourself, and one for helping others”
I have had the need and desire to help people my whole life, and since being removed from paramedic I have struggled to find a way to fill that void that was created. The void wasn’t the job, the void was in no longer having a job where I was helping people everyday. However, I don’t need a job to do that. I am learning that now. I can help someone every day with a kind word. I can help some one every day with a kind gesture. I can help someone every day by checking in with them. Everyone in this world is going through something. Everyone in this world has a hidden feeling. It is hard to reject and ignore an act of kindness when it is given to you, it only spreads goodness. If we all were to just check in with someone today, can you imagine the ripple that one act would create?
“When you have nobody you can make a cup of tea for, when nobody needs you, that’s when I think life is over”
I leave you with this one final quote. Take a moment to process this. Solitude is different than loneliness. We all need to feel purpose. We all need to have a reason for living. The relationships in your life will formulate the type of path you will take. We all need to have someone to love, and to love us. Invest in the right people, and they will invest in you. Find those people that will make you a cup of tea every day. Find someone that needs you. Make life need you as much as you need life. Audrey made life work for her. She did things that made her happy, and didn’t conform to others ideals. Don’t conform to societal ideals, find your own life. There is no wrong path if it makes you happy.
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