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.
I yearn to go back to the days where my mom would get out that trusted old syrupy bottle of cough syrup from the kitchen cupboard, (the one where the the lid was completely crusted over from some previously dried up medicine), and she would dump a bunch of it on a spoon, and bring it over to where you were lying sick on the couch. Often, I would be all cozied up under warm blanket watching ‘The Price is Right’, or whatever show was on that I usually missed because of being in school. That feeling of being taken care of, and knowing that the medicine would make you feel better, that mom’s can fix anything, is something that miss now that I am the mom of a family, and now that I have a chronic health issue. That one bottle of medicine, in all its syrupy glory, seemed to fix everything. I trusted it. I trusted my mom. I trusted the simplicity.
Things have changed a lot since I was a kid, lying on the couch watching ‘The Price is Right’. As a paramedic I became the fixer. As a mom I became the fixer. As a wife I became the fixer. But who was fixing me? I won’t lie, I still rely on my parents to help fix a lot of things in my life. They are there to help me with the kids, or to keep me company if I am not feeling well and my husband is working. They take me to appts, and they help calm me down. They are still my superhero’s in more way than one. But, there is literally no safer feeling that being 8 years old, lying on the couch, knowing that you don’t have to worry about anything at all, because your parents will make your sickness go away. That is the scary thing about growing up, and being diagnosed with an illness. Your parents just can’t make it go away like they used to. You can’t just drink the syrup and feel better. No amount of watching ‘The Price is Right’ will fix you. The doctors that always seemed to be able to fix every cough you had, now scratch their heads in bewilderment. You feel, alone. You realize that your parents, and doctors, are only human, and don’t always have the answers. Everyone starts to lose their superhero status, and you have to hope for more powerful forces to help you out.
And one day you’ll realize I’ve lost my cape, I can’t fly And I’m only human And you’ll need more than me But you know to hit your knees If I’ve done my job right You’ll know where to find the man who really hung the moon
Lyrics from Brantley Gilbert, Song ‘Man that hung the Moon’
It took 2.5 years to get my Postural Tachycardia diagnosis, and it has been 10 plus years of learning how to manage it. I now have something else going on, and the cycle of being shuffled from specialist to specialist, and hospital to hospital, is well underway again. I no longer have a cough that can be cured with medicine. I am a guinea pig spinning on the wheels of a cage in a medical laboratory. The best anyone can do, is to offer up a medicine to ‘see if it works’. I have a history of being sensitive to medications, so being handed a new medication scares the hell out of me. Having a bad reaction to medication, makes you fearful. Some days it takes over 5 days to build up the courage to take the first pill. After taking the first pill, I spend the next 2 hours worried about having an allergic reaction, and then I spend the next day worrying if I will have any side effects. That is only on the low starting dose too! Don’t even get me started on having to bump up the dosage. This is all for a medication that I am taking to “SEE” if it helps.
I am a firm believer of not taking a medication unless I know what it is for, and why I need it. I don’t like the bandaid solutions. What I mean by bandaid, is that I don’t want a medicine to take away my pain without knowing what is causing it. I want to know why I am having the pain, and then I want to fix that. If I need some medicine after I know what the problem is, and this is the fix, then so be it. So I really struggle with taking something that is for management of an ailment that I don’t even have a name for, and no doctor can figure out.
I also dislike the idea that a medication can take months for it to “start’ working. Oh, and during that time you also get to have a whole host of awful side effects. BONUS! When you feel awful all the time to start with, the idea that you will be taking something that will make you feel worse, before you get better….well that is a tough pill to swallow. Literally, and figuratively.
What I want is to reach into my cupboard, pull out that crusted over medicine that fixed everything as a kid, and feel its magic again. I want to take that one spoonful, with no worries, and feel better. I want my mom and dad to fix everything. I want to bound out of the house the next day, feeling rejuvenated. I want a diagnosis. I want my life to revolve around living. My calendar currently revolves around counting down the days till my next specialist appointment, and the disappointment or hope that follows. I want to travel, explore, and work on finding happiness in the smallest of corners. Having answers, and a way to manage something that right now is invisible , makes life possible. I don’t want to be scared anymore. I don’t want to live cornered by the fear of having a flare, or the fear of starting a new medication. That is not living. So I will continue to take the new medications that scare me, and hope for the best. Maybe this time, this one medication, will be the one that helps me turn the corner. The one that allows me to take a seat at the table of life. It’s time to hit my knees, and pray for healing, and pray for life. It’s time that I stop putting the superhero cape on everyone else, and put my own cape on, and become the maitre d of my ownlife. One reservation for life please .
I chatted last night with a fellow chronic illness warrior. We covered everything from how we were diagnosed, to how long it took to finally have an answer, and how we felt when the doctor eventually whispered its name to us. But, I had one thought that kept re-generating in my head after we chatted, so simple, yet so complex. What are we doing now that the illness has a name and now that name looms in our bodies all day and all night? That thought festered into, were we relieved? Did having a diagnosis make it easier? What has it really changed? POTS. LUPUS. MS. Did it matter in the end?
It took 2.5 years to get a Pots diagnosis for myself. I am now in limbo with yet another possible autoimmune condition, which has thrown me into a tailspin for the last few years. I am in the middle of the medical web of referrals right now, where I am the lead detective, hunting down whatever leads I get, trying to attach a name to the perp that has alluded me and stolen valuable health hours away from my life. If you were to come over to my house, it would be akin to seeing those forensic cops connecting the yarn from suspect to clue, to yet another alternate suspect. All the yarn connecting to one invisible mug shot. Who are you that has evaded me; I have often whispered. Show yourself! The one thing that I have learned since my initial diagnosis over 10 years ago, is that you have to advocate for your own self. No one else can do that for you. I have always felt that I was doing just that, advocating for myself. But, after my chat last night, I realized I wasn’t. Not even close.
I wasn’t advocating for myself
In the conversation with my fellow warrior last night, we shared a laugh when we discussed the luggage that we both drag around to other places if we go out. I know I touched on this in the blog ” 5 things to know about pots”, but we chatted about how backpacks and heating pads and other essential items had now become a part of our daily wardrobe. My backpack was my lifeline. It held everything I needed to sustain myself throughout my day. Except, it wasn’t true. After our chat, I realized that a majority of these items I end up stuffing into that bag, was needed because I would ultimately end up failing to take care of myself. I was failing to listen to my body. Failing to do what was right for me. I wasn’t packing the right stuff into my bag, because I wasn’t packing the right bag.
Self-advocating doesn’t mean your not self-neglecting
In the traditional sense, I was advocating in front of all my varied doctors and therapists, and who knows how many other professionals I had been to over the years. But outside of that medical diagnostic game, my aim was to give myself a life. Give my girls and husband a great mom and partner. Be a great friend. Be a great daughter. To live to the fullest. To explore. To dine. To wine. To have the clean house. To provide an income. To keep the kids active. To host the best party. To be the one who always says yes to going out. To making others believe that I didn’t have an illness. If they can’t see it, I could hide it. To ultimately paying for it later. Truth. Out of fear of having to make my husband leave a party or evening early I would suffer. Out of fear of my kids not getting enough fresh air, I would stand out in the cold longer and suffer. Out of fear of say no, I would walk longer or farther than I should. Out of fear of being a nuisance, I would sit on the high stool at a restaurant, knowing that my legs dangling down for two hours would hurt me later. Out of fear of looking dumb, I wouldn’t lay down at a friends gathering, when I clearly needed to. I would stand in the sun, knowing my body was overheating with an inability to regulate itself, just so I wouldn’t feel rude leaving a BBQ. It goes on and on. The ending was always the same. I would then, unzip my pack and use it all to try and recover, or I would head to the hospital.
Nobody is asking for you to do all these things
The worst part is, not one person ever put these expectations on me, except myself. I failed myself. For my own egotistical gain, I ignored the fact that I had a condition. I didn’t want it to exist, so I carried on and had the attitude that I would just deal with it later. No one would know, and I would keep up the illusion of someone with her shit together. For what purpose? Would these people really care if they knew how I really felt? The ones I align myself with, all know of my condition, and would be understanding, but I didn’t give anyone the chance. So I chatted with my husband last night, and started owning up to all the times I should of said no. All the times I should have left the party early. All the times, I should have stayed inside, or moved to the shade, or just not cared what other’s thought. I started compiling a list of things that I need to start doing for myself.
How I am planning to change? (A few items off of my list)
Take 2 cars to events, so I have the option of leaving early without feeling bad about taking that time away from my husband or friend that I am out with. (They would come back with me, but I don’t believe they should always miss out on my account either)
Don’t go to events in the middle of the day, during the worst heat of the summer. Sounds simple, but I say yes to these events all the time, and I pay for it. Instead, say yes to the events early in the day or later in the evening when the temperature is more manageable.
Ask for a table with chairs instead of stools.
Lay down at a cocktail party, and stop giving a shit who has to step over me.
Stop hosting, and allow myself to be hosted once in a while. (this one is hard for me)
So does diagnosis matter?
So to answer the question, does a diagnosis matter? Yes, it does. It gives you answers. There is relief, but that also comes with fear. Fear at knowing you have to find a way to live with this in your life now. Does it change anything? It can help you manage your symptoms easier, but in the end it is YOU that manages everything. You manage the outlook on your illness. You manage your daily outcome. You manage your thoughts. You manage the life you want to present to the world, and the life you want presented back to you. So stop neglecting yourself. Put yourself first. Trust in your friends and family. The ones that are meant to be in your life will not resent your shortcomings, but embrace them and help you live your life as much as you can. They will allow last minute restaurant changes, or let you sit in the shade while they sweat it out in the sun instead. They will sit with you while you rest your legs, and they will take you home early if you just can’t handle the pain anymore. They don’t need a front. They take you as your are, and that is enough. So I consider this blog, the start of my journey in learning how to not neglect the very thing I demand my doctors find. Me. Do I still need that backpack? Yes, but maybe now it can be a little bit lighter to carry around. Packed properly to sustain me, and not to rescue me.
So truth be told, I am married to a Back to the Future movie fan. We have a gigantic movie poster in our basement with Marty McFly, time machines in various corners of the house, pictures of us in front of replicas of time machines and yes, we have even been to the location of the back to the future house in L.A, and the Twin Pines Mall (fans will understand). Super exciting stuff. The reality is, I actually became a fan of Michael J. Fox when I watched the movie “Secret of my success” a million times when I was a kid. I know it sounds like a super random movie to grow up watching, but I was always rooting for the underdog I guess. So yah, he has been a part of my life for a while now, and it also doesn’t hurt that he is a fellow Canadian. So you may be asking, how in the world did Michael J. Fox, the one and only, manage to put my mom guilt into any sort of perspective for me, let alone create an Oprah moment in my brain. It all came down to two quotes.
You see, I picked up his newest book “No time like the future”, because I read that in the book, that he started to question his never-ending optimism. For years, he has been a huge role model for many in his battle against Parkinson’s disease, raising money and awareness to help those living with the battle. His ability to uphold his crazy amount of optimism, always made me shake my head in wonder. Who was this man, and how was he able to do this?
I picked up his book on the day that my own health struggles started to get worse, and I could feel my own optimistic foundation starting to crumble. I guess I needed to hear some encouraging words that what I was feeling was a normal course of progression, as I filtered through this life with my illness. Now, I don’t live with Parkinson’s disease, but I can tell you that the way he described his daily feelings, pains, carefully planned medication dosing to prevent attacks, and even the way he had to skillfully plan every move he made with his body, sounded a lot like how my daily battle with POTS goes. I picked up his book, because I wanted to gain more of an understanding into how time will affect my own health physically and mentally. Instead, I walked away with wisdom that is helping cure my mom guilt. Something I wasn’t anticipating.
One thing that I have struggled with since having kids , is the feeling that I can’t keep up with them, and that I won’t be able to do things that they ask of me. This condition doesn’t allow me to run with them, or tackle the steepest toboggan hills with them. Many activities I manage better while sitting, which is not an easy thing to ask of a 3 and 5 year olds with Tasmanian level energy. My mind doesn’t want to sit though. My whole life was sports oriented. I was an athlete, and still am an athlete mentally, just not physically anymore. In my mind, I just want to go for long bike rides with them, take them to see the many waterfalls on the hiking trails close to where we live, play tag, and chase them around the house and hear them squeal with delight. I wan’t to take lots of vacations requiring stamina. I want to be who I was before they were born. But I can’t. As a result, I fear them thinking I am lazy, or not interested. Often, I end up overcompensating and staying too long on my feet, or standing outside longer than I should in the cold. Both of which, I end up paying for afterwards.
It is as simple as this. What my mind wants to do, and what my body can do, haven’t caught up with each other. I am having a hard time accepting what I have, and it has been over ten years. There is no cure. It isn’t going away. I didn’t ask for this condition, and I was angry. I didn’t know how to fix it, and then I saw it. The first quote. It simply said:
“The truth is, I don’t want to live like this, but I have found a way to accept the fact that I do”.
Michael J.Fox – No time like the future
I hovered on this line in the book. It was so simple. I didn’t want to live like this. Michael didn’t want to live like that. Who would ever want to live like this or that! But he had found a way to accept the fact that this was his life. So, I had to find a way to accept that this was part of my life now. Like it or not. That was the struggle though, because I didn’t know how to accept it with kids. The guilt I felt at them having a mom who had this chronic issue, was overwhelming on days. I worried about everything I couldn’t do for them, or with them. I worried about them having to care for me one day, or the stress I would put on them if they had to worry about me. Every time I could only walk a short distance, or needed to lay down, or I couldn’t play with them on the jungle gym, I worried about what they would think of me as a mom. I was fearing the look of disappointment on their faces that I one day imagined would happen. Hearing them whisper to their friend that their mom isn’t able to do stuff and how much it really sucks, while thinking I was out of ear shot. This is what I feared. But, then I saw the quote that changed me:
“The mistake I make at times is to assume that my kids are looking at what I can’t do, and not at what I can do. They see through the disease, and they see their dad”.
Michael J. Fox- No time like the future
I had been making all these assumptions before they had ever materialized. I wasn’t giving my kids credit, that they would see me for all that I am able to do, and all that I will always do for them. Even though I can’t climb those toboggan hills, I am always at the bottom waiting for them to come down and see their smiles. Even if I can’t chase them around the park, I am on the bench beside the slides watching them learn and grow. Even though I can’t stand and bake 400 home made muffins before the bake sale, I will make sure every time that those kids don’t walk in empty handed. Even if I have to lie down and teach them math or piano lessons, I am still right there beside them. Sitting, standing, lying down. Who cares. It’s being there that counts. I am there. Maybe they will have to do the big hiking trails with their dad, while I wait in the car. But, I always will be there, and I have to give my kids enough credit that they will see through my illness and see what I can do, and that I am their mom. That is all that matters. Thank you Mr Fox, for inspiring someone that you don’t know.
I am in no way affiliated with the sale of his book, or with Amazon. I do not know him at all, but I do think that it would be awesome to one day chat with this funny ass man! The reality is, I just want to encourage others to check out his book if you are in need of some inspiration, and especially if you are a parent living with a Disease/Chronic Illness. Sometimes all it takes is knowing that someone else is or has walked a few paces and places in your shoes. You can check out his book at:
No really. Every time a person with pots stands up, our heart rate goes up by at least 30 beats per minute. It’s super fun! I mean, who doesn’t want to feel like they are running a marathon just by swinging your legs out of bed and standing up. You feel super refreshed and ready to start your day! Nope. Along with your heart rate bursting out into an excessive cadence of beats, you also get to enjoy the wonderful sensation of feeling as though you want to pass out. All day long! Can I get a heck ya! Now these are just the average potsies (as we like to call ourselves) baseline symptoms. Pots patient’s are a little bit of a mixed bag; every day you get to reach into your pots party bag and pick out a couple different symptoms that you get to wine and dine for the day. Here is a little a little cheat sheet on the vast array of symptoms that could grace us with their presence on any given day. It was borrowed from http://www.dysautonomiainternational.org website, which is a great resource for understanding and learning more about how you can cope and help with Pots research. Don’t forget to zero in on the “and much more!” portion of the chart!!! Many people with Pots get to include other illnesses that either resulted in pots or came along with the bonus of Pots!! 2 for the price of one! Which essentially means, a bunch of extra symptoms to go along with all these! WOOT WOOT!
It comes with a magical super power
Ok, so we are essentially like Harry Potter. We get to wear the cloak of invisibility! That’s right, we could walk right down the hallways of Hogwarts , and no one would know what is going on beneath our cloaks! Pots is known as an invisible illness. That is because all of the action that is taking place, is happening on the inside, and it isn’t immediately visible to those on the outside. On the outside I look like a healthy 41 year old woman, ready to take on the world. However, if I were to park my car in the disabled parking spot because I have trouble walking long distances, or use a scooter to get around the grocery store to help make sure I don’t pass out, I would be given more than a few dirty looks and comments along the way I am sure. No one sees the pain that comes with this illness, or the feeling of not being able to stay upright on your feet some days, or the amount of energy it requires to do most activities. (remember, our heart is in a sprint all day long, it’s tiring!!) This super power doesn’t always feel so super when those around us never get to understand what is really going on. If only the invisibility cloak could be shed, and the whole world is embraced in a kindness cloak instead. What a concept that would be eh?
You pack for a vacation every day
So I gave up carrying around a super trendy purse a long time ago. Now, I carry a super sexy and sleek black backpack every where I go. It’s super awesome! My husband often asks me if I am ready for school, as I sling the thing on my back. After a quick evil eye, I proceed to the car with my luggage. The best part is, we aren’t going far, just to the grocery store, but I have packed for a week long trip to Cancun it seems. You see, Pots is all about planning for worst and hoping for the best. The last thing you want is to be caught underprepared. So in my bag of fun I always have at a very minimum:
A least a litre of water
a bottle of Gatorade
a package of Nuun tabs
a weeks worth of medication ( you never know when you are going to get stranded somewhere!)
hot packs to warm my iceberg body up
cooling towel to cool my overheating body down
clothes to get warm
clothes to cool down
salty snacks, salty snacks, and more salty snacks
We are professional Salters
My name is Lindsay, and I am a professional Salter. Salting is my profession. It has to be if I want to add anymore credentials to my resume. I salt my smoothies. I salt my oatmeals. I salt things that might make the average person cringe. Oh those fries already came salted you say? Yeah, well i’m just going to shake a little more of this mineral into my life one fry at a time while you all watch in horror! Isn’t that bad for you in the long term I often get asked? No, it’s not. Would you rather I lie flat all day in the hopes that salt long term isn’t bad for me? The reality is (for me anyways), I am hypovolemic to start with (which means I start the day with low blood volume). I have to find ways to increase my volume so that I can sit and stand. Salt is how I do this. Salt enables my body to hold onto fluid, which increases my blood volume. Along with salt, I drink, drink and drink water and eletroyltes all day long. It allows me to be upright and allows me to be a mom, so yah, pass me the damn salt already! I am living for now, and hoping for the best later.
It makes you appreciate life
I would never wish this on anyone, and would never want this in my life if I ever had the choice. But having an illness puts your life into perspective. It makes you grateful for every day that you are able to function and feel good. It makes you grateful that this is all you are battling, vs some of the other more devastating illnesses that other’s in the world contend with daily. I know I have been guilty for feeling the “poor me’s”. The reality is, this is a really sucky illness. The reality is also that it could always be a lot worse too. I know a lot of people have it worse than I do, and a lot of people have it better. No one is immune to the poor me’s, and that is ok. Feel your “poor me’s”, and then pick yourself up and fight. Do whatever it takes to make your life have meaning, and try not to be defined by this. You are not POTS. POTS is not you. You HAVE pots. POTS doesn’t HAVE you. Got it? So take a second, and think of all the things around you that you DO have that has nothing to do with pots. Think of all you have accomplished despite Pots. Think of all you want to still accomplish with Pots. Let Pots be a little annoying sidekick in your life that you have to tell to be quiet every damn day, and then focus your attention forward. Stop looking back at what Pots has done, and look forward to how it changed your direction and led you to where you are going now. There is a reason for everything that happens.
POTS IS ONLY PART OF YOUR STORY, THE REST HASN’T BEEN WRITTEN YET, SO MAKE IT COUNT!
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