Updated: Jan 15, 2021
Happy New Year everyone!
I hope your holiday was enjoyable and allowed you many moments to relax.
I took some much need time off to spend the holiday weeks with my lovely family. While I was not spending hours pounding away at the keyboard trying to reach the completion of my manuscript, rest assured, I was still jotting ideas and paragraphs via my iphone notes app per usual. Some things will never change.
I wanted to take this moment to speak to you a little bit about chronic illness.
I mentioned in my previous post about my becoming aware of my membership into the exclusive "Spoonie" club. I did not ask for this membership nor did I willingly sign up for it. My book, exceptionally average, is about how I ended up here and in this condition.
I don't call this a journey. I've said it before and I'll repeat it again, my belief of a journey implies something that is pleasant to me. That's me. I know others consider it the steps they've taken to get from point A to point B.
The events that I have experienced in my health, misdiagnosis and failings of medical staff make me feel if I was hijacked or kidnapped. It feels like a toxic hostage takeover. The current state of my body is one of constant strife. It's sad. It's exhausting. It's frustrating.
So, when YOU think of chronic illness what comes to mind? I know my fellow warriors can rattle off a litany of symptoms but for those you who aren't a part of this "club" what do you think of?
Muscle spasms and/or soreness?
Joint pain? Fatigue?
Those are the common answers but don't come close. These symptoms and conditions are so much more than the inconvenience of gash on your dominant hand or a weather related pressure headache.
It feels endless. And while most chronic illness suffers don't have all of them, many have multiple and they have far too many that constantly change, alter, and morph into others all while showing up on a daily basis.
Things like Tinnitus, itchy skin and open wounds that don't heal. Nails that are deformed, ear pain and eye twitching? Brain fog or memory issues. Dizziness.
Muscle loss, burning muscles.
Breathing difficulty or shortness of breath from just walking across a room or turning over in bed.
Dry skin that cracks and bleeds, stomach ulcers, uncontrollable weight gain or loss.
Hair loss, lack of appetite, food allergies.
Gene mutations and autoimmune diseases that don't allow their body to process or detox or metabolize. Nutrient absorption issues.
Sleep disorders that never allow REM sleep, lack of sleep or the opposite, but still never feeling rested or recharged.
This list is a small sampling of the harsh reality of Chronic illness suffers, Warriors.
We refer to each other as warriors for the simple fact that anyone who can pretend to be normal while walking through their life in constant daily pain is, in fact, a Warrior.
You've met these people. They're all around you. There are over 155 million Americans that live some variation of this everyday.
Cancer patients, Migraine sufferers, Lupus, Rheumatoid Arthritis and Sjogrens sufferers, Thyroid patients, with or without autoimmune Graves or Hashimotos, Fibro, Lyme, Cushings, EBV, MS, IBS, Diabetes, parasite and virus carriers.....and on..and on...and on.
Yes, yes, I know, "Can't you see a doctor about that" or "Isn't there medicine for that?" are typical questions. Frankly, the short answer is no.
Not no, like we haven't tried. Believe me, We've tried and are still trying. Most of have been to dozens of doctors and have been through an exhaustive amount of testing. With each visit and each test and each prescription we have hopes that this time there will be an answer or cure but the sadder reality is we have found doctors who are dismissive or only interested in band aids to try to maintain life, regardless of quality, rather that solve and end our discomfort.
Many of us long for our old active, productive lives. We mourn and miss the old "us" and resent whatever illness that plaques us and refuses to depart no matter our efforts.
And now we have new members joining the group: The Covid Long Haulers.
My message to all of you Covid Long Haulers; Sorry but welcome to the club. You are not alone.
For each one of you who is new to the repetitive tests, excessive appointments, the mounting questions with zero answers and the struggle to literally just show up to your own life, You are not alone. We feel you, we sympathize with you and we are in your corner cheering you on and hoping you recover. We have been living like this for years and wouldn't wish it on anyone. Ever.
I have seen a few posts on various social media mediums about long haulers who can't understand why they aren't better yet. I understand completely. Some things look so straight forward or you feel like they should be yet we, as a collective group, have found that our medical community, while some are amazing, because seriously science can be stunning, are completely lacking. Either our diseases have become too sophisticated or our training of medical staff too naïve. I suspect it's a combination of both but that doesn't ease the minds of people in chronic pain. Each day we get up, show up and continue the battle and quest for our holy grail.
For any of you who aren't one of us and have no idea what it's like to live this way: Kindness.
That's all we ask. It's easy to be kind and know that every single person is dealing with their own demons, struggles or internal battles.
Not all of us can wear our illness like a sign that gives you a heads up or warning. Most of us are so sick of talking about our condition with a million doctors or trying to do research to be our own patient advocate in between our actual life, family and jobs that we won't announce to everyone that we are struggling. We won't share the details of the things we are trying to make disappear.
It's safe to say that you can assume that 1 of every 3 people you know has something whether they tell you or not.
So in this new year, with the current world in whatever state it's in, Please let us all try to be more understanding and kind. Your smile and patience can mean the world to someone in the middle of their already difficult day.
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