Chronic Fatigue Vs. Tiredness


A short awareness video explaining the differences between chronic fatigue and tiredness.

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lifestyle shot of a mother as she lays on the couch and lovingly hugs her toddler daughter

When Chronic Fatigue Syndrome Means You Have to 'Mother Differently'


I wake up, dizziness, a storm, gathering strength behind my eyelids. I can tell it’s going to be a bad day. I consider reaching for my phone, turning on my meditation that urges “my cells to heal my body” but I don’t quite have the will for it.

My children pitter-patter into my room. “How you feeling, kid?” my 3-year-old daughter Paige asks, climbing into my bed. She loves to pretend that she’s the mom and I’m her baby. We never played this game before I got sick and a little voice in my head whispers that this role reversal isn’t normal creative play, that it symbolizes my failure as a parent. Paige brushes my hair out of my eyes, before ordering me to, “Give your mother a kiss.”

My 5-year-old son Ethan picks up my pill case of the nightstand, pops out today’s dose, spilling them into my palm. “Here’s your get-better-medicine, Mamma.”

I cuddle them close, trying to make this moment count. They start telling me about everywhere Daddy’s going to take them today: Trader Joe’s, the zoo and maybe for pizza. They sound better than my plans which are: TV, sleep, contemplating a shower.

Later, when the slamming of the front door announces their departure, it feels like a layer of my skin has been stripped off. Alone time used to be a luxury, but since chronic fatigue has taken hold of my cells, pushing me out of my life, it’s fallout, an ugly necessity.

My children have been gone for a few hours when my husband texts me the first picture – the kids on the bug carousel, their smiles huge half-circles. Then every 20 minutes or so, I get another one comes until I turn off my phone. I know he’s trying to make me a part of their day but I can’t get past the fact that I’m not in a single picture and I don’t know when I will be again.

I first started feeling tired a year earlier. “Well, you’re a mom with two small kids,” other people said. “We’re all tired.”

But I knew that wasn’t it. My exhaustion permeated my bones and my head constantly felt like I’d just stepped off a carnival ride. I hopped from doctor to doctor and diagnosis to diagnosis: thyroid, vertigo, autoimmune issues. I took medication, went to vestibular therapy, did elimination diets, added supplements, and had acupuncture but I just got worse. The term chronic fatigue syndrome, or myalgic encephalomyelitis/CFS, started popping up. I didn’t want to claim it because it was one of those things that no one understood and no one could fix, like colic for adults, but with less hope of growing out of it. But month by month as I was able to do less and less, I wasn’t sure what else to call it.

Through Facebook, I connected with a friend of a friend who had been dealing with this for years. I read the articles she posted about advocacy for research, watched video clips showing “The Millions Missing,” showing the struggles of some of the estimated 1 to 2.5 million people pushed out of their active lives by this disease. We texted occasionally but I was afraid to call her because it meant acknowledging this diagnosis was mine. But finally one school vacation when I had to go to my mom’s for help with the kids because I was too weak and dizzy to get out of bed, I called.

We spent the first portion of the call, talking symptoms, supplements, the known and the unknown about the disease, but it wasn’t enough. I wanted her to tell me how to live with waking up each morning having your first breath end in a yawn and your muscles feeling like they’re caked in cement, to have the thought of walking three blocks to pick-up your child from school make you want to curl into the fetal position while the walk itself makes you collapse on the couch with barely enough energy to pick up the remote and turn on “Peppa Pig.” Most of all, I wanted her to tell me how I deal with the fact that I’m slipping out of my children’s lives.

“I hate that I can’t mother,” I lamented to her. “Their lives are going by without me.”

“You can mother,” she said. “You’re just mothering differently. You’re doing everything important.”

I didn’t believe her but I repeat her words daily anyway, swallowing them along with my stack of pills. I repeat them when Ethan begs me to go for a walk around the block until Daddy comes home. I repeated them when Paige cries because I’m supposed to be parent of the day at her playgroup but have to ask a friend to step in for me. I breathe her words in and out like a mantra as I pull my children onto my lap, asking them to tell me about their day, trying to weave my presence into their existence, even if after the fact.

I can’t say that I’ve found peace, because I haven’t. I hate this disease that has lay waste to my body and to the mother I thought I was. But I will not let it destroy the fierce kernel of love in my soul, will not let the loss of part of my identity, eviscerate the rest. So, I work my hardest to focus on what’s still there, like making up oogly-googly stories with Ethan and bunny foo-foo and fa-fa stories with Paige, kissing Paige until she laughs so hard she starts to cry, helping Ethan sound out the “letters of the week” while we cuddle on the couch.

I haven’t given up faith that I’ll get better. But if I don’t, I hope this is what they’ll remember – how my love was so powerful it exploded out of my pores like sweat, how I listened to every word about their day, how we created magic worlds with words, called out karate commands and dance moves and told knock-knock jokes that made no sense, even if 90 percent of it was from my place on the couch, my head resting against a stack of pillows.

Because I am mothering. I am. I’m just mothering differently.

This blog was originally published in Mothers Always Write.

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a woman in a purple shirt lays her head on the table while holding a mug of tea

What I Actually Mean When I Say I'm 'Tired'


Since being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, “tired” has become one of my most commonly used words. It’s a word we all use. Everyone gets tired. Whether it’s at the end of a busy day or as you drag yourself out of bed early in the morning, we all experience it. But the more I use the word the more I realize that what I mean when I say it can be very different to what other people mean.

For me it has almost become a code word, or shorthand, for the millions of other words I keep trapped in my mouth. It’s as much about what I am not saying as what I am saying.

To me those five letters are so much more than an adjective. It’s the ache in my muscles that weighs down my body until it feels almost too bruised and heavy to move. It’s the sadness and guilt I feel when I have to cancel something I really wanted to do. “Tired” is the thing I see when I look in the mirror. It is the paleness of my skin and dark circles around my eyes. “Tired” is the darkness and weariness that sometimes creeps into my spirit, making me wonder how many more days like this I can take.

When I say, “I’m tired,” I mean this day will be hard. I will ride the roller coaster of being happy one hour and sad the next because my emotional regulation has given up and gone home. My head will be filled with a fog so dense that forcing my brain to concentrate feels like a particular kind of torture. I will be irritable and say things I don’t mean; the words I want to say will get mislaid somewhere between my brain and my mouth. I will be endlessly frustrated with myself and my inability to “cope better,” when really I am frustrated with the direction my life has taken.

“Tired” is the black hole I am being perpetually pulled into. The opponent I have to fight, who has a fondness for changing the rules of the game whenever they feel like it. It haunts my good days and my bad days. It is the monster I will sometimes let you catch a glimpse of, but will mostly keep hidden away. Some days I worry it is all I am and ever will be.

But while “tired” is more than a word to me, I am also more than those six letters.

I believe I have a value that comes not from what I do or how I feel, but from who I am. I have no less worth on the days I can’t get out of bed than on the days I can pretend all is well. I am a daughter, a sister, a friend and I am loved. I am creative, clever, empathetic, thoughtful and strong. I am so many other things before “tired.” There will be days when I will need reminding of that fact.

I may be tired today, but I refuse to give up on the hope that tomorrow will be better. Maybe there will come a day when energy is no longer a distant memory.

In the meantime, I still have dreams to chase. I’m not done yet.

Follow this journey on Hope Whispers Today.

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Image via Thinkstock.

back of woman standing on snowy field

How to Get Through Christmas When You Don't Have Any Holiday Spirit


Somewhere buried in a box, there is a photo of me on Christmas Day when I was 9 years old. I’m slumped on the sofa, my new art box on my lap full of paints and pencils. There is a smile vaguely on my chapped lips, lost amongst the pale, sunken face and dark, hollow eyes. My hair is limp, flat and dull. It looks like the base makeup for a “Walking Dead” extra.

This was just the beginning of my myalgic encephalomyelitis (ME), before anyone in my family, or even any doctors that I saw, knew what ME was. None of us knew that I would still be slumped on that sofa on Christmas Day over a decade later.

Since then, I have had a love/hate relationship with Christmas and especially New Year. Each year I try a little bit harder to rediscover my Christmas spirit, but each year, I hate it just that little bit more. Every Christmas I am suffocated by the things I can’t do; I can’t wear sparkly dresses to cocktail evenings or office parties. I can’t go for long walks in the frost of candlelit villages. I can’t sit at a dining room table packed with 10 people, all yelling above each other that make my ears and head sore, or raucously, drunkenly laughing while I stay sober. I can’t hold the concentration to play board games. I can’t go about bustling shops to find the perfect present or battle the chaos of January sales. But most of all, I can’t go out on New Year’s Eve, I can’t countdown the year without each second flashing a failure or disappointment of the year gone by, and I can’t have people wishing me a Happy New Year, or slurring “This will be your year! This will be the year you get better!” when I know there will be very little happy about it, and it most definitely won’t be the year I’m cured.

Normally, I’m so strong and hopeful and positive. But when we hit December 1 and those adverts begin, it’s like a switch. I become a month-long scrooge.

So what do I do to stop myself having a Christmas breakdown, from burning all the decorations, from lunging a turkey at a drunken uncle?

1. Accept it.

Being in denial that you hate this season, and forcing the ignorant, false happiness onto yourself will make it even worse. Imagine that every time you force some holiday spirit onto yourself, someone is shaking a Coke bottle, until one day, probably Christmas Day, a hyped up child complains about the sprouts and undoes the lid — boom. Fizz everywhere.

2. Embrace it.

My Dad, being a postman, hates Christmas, too. Every year, we jokingly make our Christmas all about the Christmas tips he receives, which drives my very religious mother bonkers. It is a way of making it humorous and light-hearted, it avoids all the very traditional customs, and having someone else who also wishes December ends quickly makes it easier, too. You can even get in touch with me to unleash your inner Ebenezer.

3. Use it to your advantage.

Christmas means shopping. This luckily, can now be done from the confines of your bedroom. So no one needs to know that only four out of 10 items are presents for other people and the rest are for you. It also means an abundance of food. I have IBS and so I avoid the usual big meals, and the Christmas dinner can sometimes be a nightmare. But the leftovers! Being able to snatch a cold roast potato, or a slice of turkey, because you can’t be bothered to make a sandwich. And, as it’s Christmas, eating a tub of Mini Cheddars at 3 a.m. because that’s what you woke up craving is perfectly acceptable. Remember, calories don’t count in December.

4. Don’t give in to peer pressure.

So you want to spend New Year’s Eve on your sofa with an enormous takeaway and a blanket by yourself? Then you do that. Don’t let friends or family make out that you will have a much better time wearing itchy clothing, in a sweaty, crowded environment, not even being able to leave early because “You must stay for the countdown!” If your gut is telling you that that’s what you want to do, you do you. You can all go out on another night, when the atmosphere is not so forced. Ninety percent of people will always say that their night out on New Years was overrated and anti-climatic. You know what’s never anti-climatic? Egg fried rice.

5. Don’t shy away from your emotions.

Be angry, be resentful, be in despair, be sobbing at a puppy in a Santa hat. This time of year is nostalgic for everyone. We look back on all we did and didn’t do in the year gone by and we relive everything we felt. It’s all part of the closure for the new beginning on January 1.

6. Don’t compare your year or Christmas to others.

There are those who have had the perfect year; my brother always seems to have the perfect one, he goes from strength to strength at his job, in his relationship, at his whole life. Every year there’s another big successful milestone for him. And yes, I am a little bitter, and a little jealous, but I’m also incredibly proud of him, and very aware there have been elements that he’s kept to himself that were difficult. There are things I did this year that even the healthiest people are jealous of. Avoiding social media on Christmas Day is very beneficial; do you really want to see another Christmas Day engagement ring or another Pandora charm? Or that girls pile of expensive presents while you mainly got thermals or heat pads? I know, I know; it’s like watching a really gross video – you don’t want to see, but you just have to. But do try not to.

7. Count your blessings.

Literally, count them. When you’ve just seen a Snapchat of everyone in sequins drinking champagne while you’re in pajamas and drinking decaf tea, count 10 things you’re grateful for; Your dog, your Netflix, your partner, your independence if you’re single, your strength, your favorite lipstick. Whatever comes to mind, however big or small. Every time you feel a little resentful or bullied by life, stop and count.

8. Remember it’s not forever.

By January 2, the Christmas spirit is good and buried, those blinding lights are taken down, those presents you saw on someone’s Facebook is probably in a closet and remember; it really could be your year. Never lose hope.

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Lead photo by Thinkstock Images

Antique Silver Spoons on White Background

What I Wish For Most This Christmas as Someone With Severe Myalgic Encephalomyelitis


I still remember the excitement of making a Christmas wish list as a child. I would scour my magazines for the latest toys and painstakingly handwrite a letter to Santa with my chosen cut-outs pasted next to my list. Some days later, I would receive a postcard from Santa himself, assuring me I would have the best Christmas I could ever hope for!

Making a wish list as an adult with a chronic illness is slightly different to my childhood memories. Living with severe myalgic encephalomyelitis (ME) means my list is less toy-heavy and more focused on the experiences that would improve my life. Here’s my wish list for this Christmas, as someone with severe ME:

1. A drawer full of spoons

spoons

For the chronically ill person or “spoonie,” spoons represent the amount of energy you have allocated for one day. A particularly bad day might be low on spoons, or if you have spoons in abundance, you can achieve more than you hoped for. A commonly expressed wish in the chronic illness community is for a drawer full of spoons, and that is what I would like to bestow this Christmas on myself and all spoonies.

2. Love and support

Christmas is a time to celebrate with loved ones, but it can be a hard reminder for those lacking support systems. Many spoonies find that friends and family drop out of their lives, unable or unwilling to deal with the reality of living with a chronic illness. Although people have left my life since falling ill, I am lucky enough to now be surrounded by those who love and care for me. I wish the same for every person with a chronic illness this year. Everyone deserves love and respect, especially those with a chronic illness.

3. A helpful GP

General practitioners and other medical professionals act as the gatekeepers to treatment for the chronically ill. At best, they can open the doors to appropriate medical intervention and a better life, but when they are unwilling to help, they can have a devastating impact on the lives of their patients. Having an unusual illness, there are not many medical professionals who can shed light on my situation, and the thought of actual treatment is a far-off dream. I hope and pray one day that ME will have more respect in the medical community and that doctors everywhere will better understand the needs of their patients.

4. Mobility aids aplenty

woman in wheelchair in a garden
Above: the author in her wheelchair

Shower chair? Check. Wheelchair? You betcha. Folding chair? Next on my list. Mobility aids can tangibly improve the lives of the disabled and chronically ill. I know I would not be able to shower myself without my handy shower chair or visit large stores without my wheelchair. There are so many fantastic aids out there, which are increasingly adopting fashionable designs so we spoonies can look good as well as do more. My only problem is choosing just one for my list!

5. A supportive community

No man is an island, or so John Donne wrote. It is human nature to rely on each other, even more so when you have a chronic illness. But unfortunately it so often seems that the community at large – our lawmakers, community organizations and government employees – do not work to support those most at need and instead actively work against them. I have been attacked over the phone by a council worker who tried her utmost to deny me the home help I so desperately required. Workers at disability organizations, who should be offering me help instead tell me I am not “disabled” enough to access their services. The chronically ill will never thrive in a society which denies them the help they need to get by. I believe all of the goals on my wish list could be achieved if disability support had pride of place in public policy.

I wish all the spoonies out there a very merry Christmas and that you receive all you have on your wish list and more.

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Thinkstock image up top by Gokcemim

photo of decorated Christmas tree and gift boxes against burning fireplace

A Holiday Wish List for the Chronically Fatigued


I adore Christmas; it really is the most wonderful time of the year. Last year, however, I was left wondering if I’d somehow ended up on Santa’s naughty list as I was gifted with the unholy trinity of flu, pneumonia and, ultimately, chronic fatigue syndrome.

This year, taking my current health into account, I’ve developed a somewhat specialist Christmas list. If your loved ones are currently living with a chronic condition such as mine, here are a few suggestions as to what they might like to find under the tree come Christmas morning:

1. Food

Preferably something that will freeze easily and then heat from frozen in either the microwave or oven, for all those days when the effort of walking from sofa to kitchen is enough to make them consider going on a fast. It doesn’t need to be homemade. It doesn’t need to be healthy. It doesn’t even need to taste particularly nice. It just needs to be edible and it will be hugely appreciated.

2. Wheelchair accessories

If you’ve never used a wheelchair, you probably haven’t realized how cold it can get just sitting there. Thick socks, knee length boots and thermal underwear are all well and good, but what your friend really needs is a lovely thick blanket. Or maybe one of those fleece-lined sleeping-bag type things. The first time I went out in my wheelchair I refused a blanket through some misplaced sense of how I might look. Thirty minutes and a minor case of frostbite later, I ate my words (and promptly borrowed the husband’s jacket to wrap around my legs).

If your loved one is able to use a self-propelled wheelchair (hopefully with more success and control than I’ve managed to master so far), then some kind of storage facility (yes, I mean one of those bag-type sections that attaches to the back of the seat) would probably come in handy. As I have now discovered, it’s quite difficult to maneuver a wheelchair while simultaneously trying to balance a large handbag on one’s knee!

3. Pajamas

As the name would suggest, chronically fatigued people feel fatigued (we’ll not go into the details here; suffice to say, they’re perpetually exhausted). Years of research has (probably) gone into finding the most comfortable clothing to wear whilst one is tired. The answer is PJs and your loved one probably now experiences similar levels of excitement when opening a new pack of PJs as they used to do when trying on a new pair of high heels. It doesn’t matter if they already have drawers full. PJs are like handbags… a girl can never have too many.

4. Amazon (or any other online) shopping vouchers

Chances are your friend no longer has the energy or patience to do their shopping in the traditional sense. We like vouchers because we can shop in our own time, in bed, in our PJs (see point 3, above). They also come in handy for buying the huge variety of supplements we imbibe each day in the hope that our energy levels might improve.

5. Books – preferably ones that make us laugh

Although reading, as with any mental activity, eats into the sacred “energy envelope” of your chronically fatigued friend, it also provides a good way to pass the time without having to expend much physical energy (especially if you can find a willing volunteer to turn the pages for you). Books which make the reader laugh, preferably until they cry, get the old endorphins going and provide light relief in what can sometimes be a pretty miserable situation. I can highly recommend “My Dad Wrote a Porno” by Jamie Morton. Just make sure you provide a pack of tissues, too (for the tears of laughter).

6. Your time

For many people with chronic fatigue, their social life — including links with work — have inevitably shrunk and may even have withered into non-existence. This isn’t healthy for anyone and, while it might sound clichéd, the best gift you can possibly give to your friend is your time. Our illness may have taken away many things, but it hasn’t taken away our sense of fun, our desire to laugh (and see point 5, above), our love of gossip and our interest in the lives of others. Give us a call, send a message, contact us via social media, or — if possible — come and visit. Hopefully there’ll be a ready meal in the freezer we can share for dinner. Dress code: PJs.

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Lead photo by Thinkstock Images

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