To the People Who Walk With Me on My Chronic Illness Journey

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Dear People in My World,

I just wanted to drop you a note to say thank you.

Thank you for knowing, for taking the time to know a bit about the disease I have. Thank you for knowing that having Chronic Fatigue Syndrome doesn’t mean I’m just tired all the time. Thank you for knowing that the nausea is constant, that I am out of breath lying in bed, that I am dizzy all the time and that my body just hurts… and that this is on a good day. Thank you for knowing that the person you see in front of you, me, is constantly living a lie to exist in this world. Knowing that the well-made-up, well-presented me actually spent ages putting my makeup on to cover the bags under my eyes, or that I needed to lie down after having a shower, and after getting dressed and again before walking out the door.

Thank you for your understanding. Thank you for understanding that even though I might not talk about it often or if I look like I am getting on with life, I’m still unwell. Thank you for getting that this is what life with an invisible illness is all about. Thank you for understanding that I’m doing my best and that to do my best comes with sacrifice, pain and heartache, because to meet that deadline or to go out tonight means tomorrow may be spent in bed. Thank you for seeing that each and every task I do in a day needs to be measured and weighed to see if it is worthy of the energy required.

Thank you for asking. Thank you for asking if I’m actually okay and listening for a real response. For specifically asking about my needs, and what practically you can do to help. Thank you for asking what time you can come over to fold my laundry or bring me a meal, because without that my clothes will live in a washing basket for weeks, or I won’t bother with dinner because eating the meal itself is exhausting, let alone the thought of preparing the food.

Thank you for advising. Thank you for seeing into my life and looking at where I am and my situation and, out of the care you have for me, speaking into my life. Thank you for the fact that this advice is specific and well intentioned, not based on generalized statements or thoughts about the disease I have or the way I’m managing it. Thank you for offering advice only after you’ve walked in my shoes or spent the time considering my shoes.

Thank you for doing your best to continue to include me, even when time and time again I need to say no or cancel at the last minute. Thank you for picking me up and dropping me home, even when it’s out of the way. Thank you for dropping in for coffee or doing my shopping. Thank you for coming to sit on the couch with me and share a gluten- and dairy-free pizza (and not complaining as we eat cardboard)!

Thank you for listening to me through my tears when it’s all become too much. Thank you for listening to me explain the latest treatment or life plan. Thank you for listening to me complain, cry, rant and talk myself in circles. Thank you for decoding my word-finding difficulties and my constant brain fog. Thank you for remembering important appointments and checking how they went.

Thank you for encouraging me with your texts and your kind words. Thank you for encouraging me with small gifts and passing comments. Thank you for encouraging me to keep my eyes on heaven and grow in my joy within the pain.

Thank you for your compassion, your kindness, your joy, your prayers, your fun and your concern that shines through all of the above.

Thank you for being you.

Thank you for reading this.

Yours gratefully,

Kate (the girl with the invisible illness)

A version of this post was originally published on Make It, Bake It, Fake It.

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Lead photo source: Thinkstock Images

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My Unexpectedly Thankful Letter to Chronic Fatigue Syndrome

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Dear chronic fatigue syndrome,

I need to get a few things off my chest.

First of all, you need to change your name. You have a confusing name. Life with you involves much more than just feeling tired all the time. Plus, your name doesn’t even have capital letters, but your acronym has extra capital letters: ME/CFS. The name needs to go.

Secondly, my husband and I most definitely have not enjoyed your company over the past two years. You moved in uninvited, for starters. And at a most inopportune time: two weeks before our second baby was born. How rude, taking my mobility away at such a time! Caring for a newborn and toddler is demanding work. Our kids are now 2 and 4, and they don’t know life without you…

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Sick Mommy trying in vain to have a rest while the kids watch TV

Thirdly, I don’t appreciate your invisibility. Sneaky and sly, you evaded medical detection for quite some time. I knew something was wrong, but had no name for my debilitating symptoms. Was it post-natal depression? Was sleep-deprivation making me this way?  Terribly confusing. So even though I dislike your name, I’m sort of glad you at least have a name!  Now we know how to treat you.

Lastly, you present me with a dilemma: I’m mysteriously contented. More contented now than I remember being pre-illness. Bizarre. Paradoxical. But true… I’m being forced to accept a much simpler life. Unfettered by my old “friends” – busyness, perfectionism and over-achievement – my spirit is thriving.

I hesitate to admit this, for fear that you’ll mistake it as appreciation. I concede I’ve changed for the better during your time with us.  My tunnel-visioned, self-sufficient independence has given way to a more community-oriented interdependence. Our children are cared for by a small army – paid and unpaid – of loving people devoted to their well-being. It’s taking a “village” to raise our two kids. By necessity, not by choice (I do miss them). But I’ve been pleasantly surprised! This less mommy-centric model is actually working OK. The kids are resilient and playful and intact. I’m no longer terrified that you’ll destroy them.

Again, please do not misconstrue this as praise, but our marriage has even grown since you moved in. I’ve become less nit-picky and less critical of my husband. You are such a truly awful pest to live with, ME/CFS. I’ve got bigger fish to fry with you around! Your presence has given me a different perspective on my husband. Who cares if he leaves his clothes on the bedroom floor and scrapes the margarine out messily and leaves cupboard doors open? He’s doing all he can to love us, while putting up with you, and that means the world to me. I’m more patient with him now. And kinder. And more trusting. He hasn’t changed; I have – for the better.

Chronic fatigue syndrome, my life is now bare where it used to be blooming. I’ve lost my career. I’ve lost touch with friends. I’ve lost my social life, my independence, my mobility. I’m not the vibrant, active mother I set out to be. My short-term memory is worse than ever. I have become unreliable. (My poor husband!) I struggle to concentrate on simple things. But different parts of me are flourishing now.

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On a “babymoon” holiday, a few weeks before the virus that triggered ME/CFS knocked me out.

Parts that were weak and neglected before have become strengths, even assets. I’m becoming a less self-absorbed, less opinionated person. I’m more grateful, calmer and more gentle. Yes, I still have days where it’s all too sad – the losses still overwhelm me sometimes. But I can’t deny the beauty that’s present in my “new” life.

I’m growing.

Is it because of you, or despite you? Or a bit of both? You really are an enigmatic character, chronic fatigue syndrome. Keenly unwanted and truly awful, yet at the same time, you’ve enriched our lives…

I’ve got it! You are a bit like compost. Smelly, disgusting, putrid, rotting, nutrient-rich compost. A reminder that new life can sprout from unpleasant sources. Compost

That’s your new nickname. I like it better than your real name.

Regards,

Ruth

Follow this journey on Fruitful Today.

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Why My Brother Makes Me Believe in Superheroes

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I believe in superheroes. My brother wears his superhero cape and mask around the hospital to show his strength and his courage as he fights this battle against Mitochondrial Disease. It’s a disease with no treatment, no surgery, no magic pill and no cure. My brother, Tyler, and I both have several rare, incurable diseases and this has brought a bond between us like no other.

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I was 12 on April 16th, 2011 when Tyler had a seizure in my arms. I remember screaming for help, thinking it was my fault, collapsing on the ground crying with my younger brother, not knowing what was happening or if he would survive the night. Tyler turned blue within a matter of minutes and ended up having two seizures that night. Soon after, he was diagnosed with Mitochondrial Disease and he is still showing the world what amazing things he can accomplish despite the obstacles in his way.

Since then, Tyler has cheated death twice (for a total five of times), which is way too high for an 8-year-old boy! I will admit the facts and statistics scare me because I know I will probably lose my best friend, but I pray every day a miracle treatment or cure will come. I just hope it comes and saves my superhero before it’s too late.

Over the weekend, Tyler and I were talking while I was pushing IV medication through his Arteriovenous fistula and several things he said reminded me of the past. We were just having a normal conversation about something funny and then he said he had something to say.

I listened and he broke my heart. I hate it when he says he feels lonely and scared. He told me how thankful he is to have me so he doesn’t feel so lonely because I understand the pain, the tears, the tubes, the wires and the hurt. I started to cry. It’s not fair that an 8-year-old boy says he wants to rip his tubes out because it hurts too much. Sadly, this is his experience with his disease.

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Through everything that has happened, we are both somehow alive today. I think it is because we have each other. Being sick has made us best friends ever since day one. I am proud to be his sister because he has shown me how to live my life a little differently than most do. Before I finished giving him his medicine, the last thing he told me was this: “But life is just life, you know? Whatever happens, happens.”

Superheroes are supposed to sacrifice things in their life for others and that is exactly what Tyler does. Every day Tyler could only care about himself and how much pain he is in. Instead, he puts others, including me, first. It is something we have always done since the beginning.

Having two sick kids in our family is hard enough on our parents and siblings. They need a break just as much as we do. Even though Tyler is hurting, he takes the time to worry about others before he worries about himself. Tyler defines what a true hero is: courageous, bold and a fighter.

This post originally appeared on Chronically Awesome.

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A Letter to the Word No One Likes to Hear From Doctors

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Dear “Interesting,”

Yes, Interesting, you’re not the word people like to hear from their doctors. You fit in with “Rare,” “Hmmm,” “Exceptional” and “Will have to look into.”

So why, Interesting, must you be with me? I have a diagnosis of leber’s hereditary optic neuropathy (LHON)? That itself is Interesting, but I also didn’t follow the way it typically develops. Of course. So Interesting within Interesting. I lost my vision in my left eye when I was 20. Typically, the other eye is affected and loses central vision, but I’ve remain stable for more 10 years, which is Rare.

When I went back to the neurologist for other problems, he stated, “I already diagnosed you.” Within a week I heard, “It’s Unlikely that you have LHON and multiple sclerosis (MS)” and then, “Yes, you definitely have both.” Interesting.

It’s Unfathomable that my first son was stillborn after a normal pregnancy. It’s Unfortunate that it took me awhile to get pregnant both times.

It was Unforeseen that I had a MS relapse after my son, Reece, was born. My vision deteriorated, and I became legally blind months later.

Yes, Coincidentally, there’s some kind of connection among all my medical ailments, but my condition is too Rare for any answers.

Now, Reece has been diagnosed with autism, which is Ironic because LHON been connected to sensory issues. It’s all too Complicated.

I may not visually see everything, but above all, I know Reece and I aren’t just Interesting. We’re Special.

Sometimes I wish you would try out Normal, Interesting. (Or simply, Easier.) I would love to meet Cure.

Sincerely,

Marci Belk

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The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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A Letter to My Juvenile Arthritis

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Dear Arthritis,

You’ve taken so much from me. School, work, friends, hobbies. Every day I wake up in pain, and every night I go to sleep in pain (if I do get to sleep). You’re constantly trying so hard to make my body fail, to make my life so hard, to make me give up. But you know what? I won’t. I won’t lose this war. Maybe I’ll never win it either; maybe this fight will last my whole life, but I will never give up. There will be days when I feel like you’re beating me, but I will always come back. I will always continue fighting.

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This game is unfair. It’s like a soccer match without rules, breaks or an end. You’re the referee, the manager and the opposing team. It’s up to you when you’ll hit the ball, when you’ll try to score a goal. Sometimes you succeed; you’ve scored some goals during these years. But so has my team. The cortisone injections are like giving one of your players a dismissal; the pain killers are a free kick to me. Some of the other meds make your forwards play worse, some take players off the field. The happiness, hope, laughing and faith make the ground tilt a little so the ball rolls away from my goal. Together, doctors, nurses, physiotherapists, occupational therapists, researchers, friends, family and I do everything to help my body score goals.

In the last months, we haven’t done great; your team has been stronger than mine, but don’t get too happy about that. We will find a way to improve, and I will always continue fighting.

You don’t make it easy, and I might not win, but I will make the best of the time I’ve got.

I won’t give up.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why Diabetes Has Me Singing This Classic Queen Song

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HEY! DIABETES! You blood-sucking, effort-zapping, pancreas wrecker,

There are no endearing terms for you, but I just wanted to get your attention. And, of course, you counter by attacking me with the lethargy brought on by low blood sugar. It interrupts my tirade against you, making me get off this chair to go eat some blood sugar-raising, weight-gain inducing carbohydrates, just so I can slam you down with my pen.

You think you are the mighty one, but I have to wonder who is stronger and tougher.

Me? For keeping you at bay for 38 years? Or you, For erratically showing up whenever and however you want?

Thanks for helping to upend my moods, my energy levels, and my self-control. You are no friend of mine. Incessantly, you hang out like a filthy slob in my life — wreaking havoc with my attempts at normalcy, shattering my attempts to reasonably control my health by jumping to attention when I eat too much or having an over-energetic exercise session.

Just when I think you’re not paying attention, you wake up from your comfortable position on the couch and rush to the forefront of my brain again. You’re always there, aren’t you?

Some days, I just plan to give up on you. Some days, I try to eat better and exercise and still feel like giving up on you. Some days, all seems well and I feel I might be able to live with you. Some days, I do not even want to know what you are up to while I am trying to eat better, exercise a little more and simply enjoy life as it comes. Every day, I’d like to forget you. But I can’t.

No matter what I do, it’s a dance of conflict. I throw you a well-prepared, carbohydrate-counted, portion-controlled meal and you pitch back at me high blood sugar. I shove some insulin at you and you bite back with a dose of fatigue and irritability.

This is not sissy fighting. It’s Rocky Balboa and Paul Blart (form the movie “Mall Cop”) all mixed into one. We take turns at being the heavy hitter or the survivor — both reaching for destiny, one with a powerful punch, the other with a desperately weak attack. Most often, it seems I am Paul Blart, searching out the hair-infested, dusty sucker salvaged from under a desk in a feeble attempt to treat hypoglycemia.

Some days, you beat me up mentally as I consider all the strategies needed to spar with you. Is my purse equipped with a blood sugar meter, mentos to treat low blood sugar, and insulin pens and needle tips to treat highs? Have I been drinking enough water? Am I out walking or running or lifting? Or, am I lethargic at my desk, wondering why I feel like cat crap?

My defense mechanisms rage as I sigh and wonder if you will pick your next fight with my kids, who share my genetics, and those of their ancestors. Then you win and I get sucker-punched into a stressed-out mode that drives up my blood sugar. I wish you would just leave me alone.

At the height of it all, though, you freakin’ unwelcome bedfellow, I think to myself —

Would I strive so hard to be healthy? Would I eat the way  I do (apples and peanut butter vs. the Reese’s Peanut Butter Cup Blizzard at Dairy Queen – extra large) or exercise as much (huff and puff) if I didn’t have to worry about you winning the fight?

Would I have a nice family of five kids if it weren’t for you hanging around to “help” me be healthy during pregnancy?

Would I even care as much about living as I do?

You see, I care a lot every day, and you are my excuse for doing so. Yes! It’s an edge-of-the-table arm wrestle with you all the time. I’m not giving up because I know neither will you.

Since I am a person and you’re just a thing, I’m claiming victory. Every day for the past 38 years, I’ve won. So, let me hold hands with all of the diseased of the world. Can you hear us? We’re singing Queen’s “We Are The Champions.”

“We Are The Champions. And we’ll keep on fighting to the end. We are the champions. We are the champions. No time for losers, because we are the champions… of the world.”

Yeah, you’re the loser, diabetes.

I’ve got this.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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