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I Don't Have a Paying Job But I Still Have a Life

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I am 23 years old. I graduated high school in 2012. I got a job soon after. But that’s when severe anxiety and panic attacks entered my life so I had to quit. And through the years, things only got worse, even after trying more jobs. One that I worked 70 hours a week.

To the world, a job is what makes one successful. People everywhere struggle, but they find a way to make do with what they have. And with what they need. The hard-working person tries to make ends meet, too.

My point is, I am a girl who doesn’t have a paying job but I still have a life, too.

I have postural orthostatic tachycardia syndrome (POTS), thyroid disease/autoimmune disease, chronic fatigue syndrome (it is more than just tiredness!), chronic pain, and some mental illnesses.

Many people think those don’t necessarily disqualify me from working.

My jobs are trying to fall asleep before 6 a.m., trying to clean the house and do the dishes, meanwhile trying to give myself permission to take a breath or do my own laundry or even shower.

Some days, even opening my eyes is hard. Some days even standing is hard because my chronic illnesses can flare at similar times, not to mention the weird/unexpected/unexplainable “normal people sickness” my body catches, like colds, sinus infections, the flu, allergies.

My job is myself. My job is my family. My job is health, acceptance, joy, sanity, energy, remembering to take medication and vitamins. Heck, remembering to drink water!

You think I just get to sit around all the time? That I get to watch Netflix all day? I get to sleep all day? I don’t have to worry about anything? I don’t have a reason to be so tired? I don’t have a reason to not work? You think I don’t deserve to go have coffee with a friend? You think, “Well, why do you need coffee? You ain’t got nothing to do!”

I have lots to do. Loads.

I have a life, even if my job isn’t at a store or restaurant or gas station.

Chronic illnesses/mental illnesses and pain are my life.

I get that some people have it worse or have worse things. But to me, my stuff is real. No person is always the same with these things. And just in general, everybody is different.

It doesn’t make me weak. It doesn’t make me lazy. It doesn’t make me selfish.

I have things to see, things to do that I love, people to meet with, church to attend, cleaning, showering, caring for myself.

I am a girl without a paying job, but really, I do get paid. Not with paper. With finding joy in small, simple things. With gratefulness. With discovering. With life.

But I have a life, too.

Just because you work doesn’t mean I don’t have things to get done, or things to go through, or my “simple job” should be easy for me.

Go look up the symptoms of thyroid disease, or POTS, or depression, or any of what I listed, and if you say “nah,” then please don’t give an opinion about how someone going through it should feel or live.

I have a life, too.

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

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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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A Letter to My 3-Year-Old With Nemaline Myopathy

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Photo above by Living in the Light.

Ethan,

I still can’t believe that three years ago, I became your mother. I’ve watched you grow from this tiny, beautiful and fragile little baby to this larger-than-life little boy.

I remember holding your tiny little body, not even 24 hours old, on my chest and feeling overwhelmed with so many emotions. Nervousness, learning to take care of a little baby. Uncharted territory. Exhaustion because, little one, that delivery was one hell of a ride. And complete happiness that you, beautiful baby boy, were mine.

mom holding infant

I stared at you in wonder, your heart-shaped mouth, your 10 tiny fingers and toes. I felt this all-consuming and indescribable love for you and for your daddy. We went from a couple to a family overnight. I finally knew what they meant when they said that having a child was like forever having your heart go walking outside of your body. My heart was now lying on top of my chest in the form of this little miracle. You were so much a part of me, of your daddy, of everything I loved, and I never wanted to stop holding you, breathing in your yummy baby scent.

A little over a week later I all of a sudden couldn’t hold you because my heart was now lying in a hospital crib connected to tubes and lines and sensors. We didn’t know what was going on and why your body was failing you, but I have never felt such anguish. I couldn’t hold you when you needed me most, and one day I cried until your nurse let me hold you. They were scared to move you with all your tubes and lines, but I promised (more like tearfully insisted) we would be extra careful. When I finally had you back in my arms, you fit like a missing puzzle piece.

For a while, I had this irrational fear that you wouldn’t know I was your mommy. There were so many doctors and nurses coming and going, and our bonding time was interrupted with the daily routines of the pediatric ICU. You taught me just how strong the bond between a parent and child is, as of course you never forgot me or your daddy. We lived for the moments we could hold and rock you. We still do.

We spent every day at your bedside, and every night that I walked away from your sleeping little self in the PICU and walked back to our Easter Seal’s room, I struggled with the knowledge that you would wake up and find us not there. I am forever in debt to the nurses who comforted you on those nights.

I’ll never forget the moment your doctor and team brought us into this little, windowless room off the PICU. The picture they painted of your future felt bleak. We had spent our whole experience prior to this optimistic and naive, believing this was all just something you would outgrow. I felt my heart drop to the floor as I listened to your doctor explain your long term situation. I remember thinking to myself, I’m going to quit my job and dedicate my everything to you. I felt the dream I had of what our life would be like starting to drift away as I began to imagine what our new path would be like. A different path but just as special. We weren’t sure what to expect, no one did, as the reoccurring phrase heard from your doctors was, “We will just have to wait and see.”

Last night, your daddy and I were looking back on our past three years with you, and he said the one thing that has always stayed constant has been your spirit, your love and your strength. Whether it be a good day, a bad day, through countless appointments and tests, you make it impossible to not feel optimistic about the future. No matter what happens, it’s going to end up OK. You’re going to succeed with whatever is thrown your way.

I hope you remember that always.

Look at how far you’ve already come. You’re splashing through puddles in your new power chair and driving over your grandparents’ garden. I’ve never been so proud of your mischief! You’re spelling words, “cat, dog, fish, Ethan…” and trying to mimic us when we speak. You’re learning to speak through an AAC app and learning more sign language words than I can count. (We suspect you’re creeping up to 100 words!) You learn things so quickly, and your memory is incredible. Your daddy and I love listening to you hum along to your favorite show tunes and love seeing your curious, funny and sweet personality shine through. You have us wrapped around your little adorable finger.

family of 3 It was heartbreaking to learn that the severe congenital form of nemaline myopathy had devastating statistics, with up to 66 percent mortality rates before the age of 2. Yet, here you are, 3 years old. We treasure every single day with you, and each birthday is precious. You’re still here, still fighting and still showing us love unconditionally. Navigating the rare disease world hasn’t always been easy, but loving you always has.

“Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body. ” ― Elizabeth Stone

By contributing to research and bringing awareness to nemaline myopathy, we can actually help. I can’t stress this enough. There could be treatments for Ethan and others living with NM within his lifetime. Please consider donating toward A Foundation Building Strength to directly support NM specific research and Ethan’s chances of finding a potentially life saving treatment.

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The Everyday Frustrations of 'Fibro Fog'

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I was treated for multiple sclerosis (MS) for three years by the chief neurologist of a hospital in Toronto, only to be told I don’t have MS. When I asked him what he thought I might have, he said, “I have no idea, but you can get a second opinion and maybe they can teach me something I don’t already know.” I left his office feeling very deflated and told my husband he was a pompous a** donkey.

I was tired of the widespread pain and the fatigue that attacked my body every day. I asked my MD to refer me to a rheumatologist because I had determined through my own research that I had fibromyalgia. My MD said, “You don’t have fibromyalgia because you have brain lesions.” After much persuasion I finally got the referral, walked into the specialist’s office and said, “I have fibromyalgia.” Indeed, I was right. I was finally validated… no longer were my symptoms all in my head!

I learned through a fibro support group that “fibro fog” does exist. Thank goodness I had an excuse for not having any short-term memory because I would watch a movie in the evening but the next day I couldn’t remember the name or the content. All I could remember was that the movie was either awesome or crappy.

A friend would say to me, “Do you remember when…” and inevitably I would say no. Then I would ask, “What did I do that time?” The friend would try to remind me of the silly things I had done and I would laugh because it was funny; and yet, I had no memory of that incident. People would say, “I told you that last week,” or I would say something only to be reminded that I had already told them that very something.

So, I wrote an email to my friends and family (to no avail) asking them to be patient with me and not say, “You told me that already” or “I told you that last week.” How embarrassing it is to not remember… Oh my, I just forgot what I was going to say right now! To not remember a word in the middle of a sentence or to trip over words is so frustrating. To not remember why you have walked into a certain room, to not remember where you put something you use all the time, to not remember the point of something you began talking about and to not remember the hiding space where you put something to keep it “safe” makes a fairly intelligent person feel not so intelligent.

Recently, my daughter-in-law told my sister she doesn’t believe I don’t remember conversations, and I was quite annoyed when I heard that. “She can remember; she remembers lots of things.”

However, I try very hard to see the positive side of things, and in this situation, I do have an advantage: not everybody can hide their own Easter eggs.

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12 Tips for Getting Through College With an Ostomy

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If you have an ostomy and are either in college, like myself, or getting ready to go off to college, chances are you’ve thought about how you’re going to deal with everyday college life and your ostomy. This won’t be the only article I write in this series, but I thought I’d compile a handy guide of the best tips that have gotten me through school so far!

1. Always carry extra supplies with you. Personally I’ve never had a leak at school, but that doesn’t mean I don’t carry at least three pouch changes (and all materials needed for that) at all times. It’s helpful and will put your mind at ease to know that if something does happen, you have your extra supplies ready to go!

2. Know where the bathrooms are on campus. I can’t tell you how many times I’ve drunk coffee before a 7:30 a.m. class and had a bunch of watery output that I had to deal with quickly. It really helps to know where everything is so you aren’t running around in circles if you have an emergency.

3. Carry a small water bottle and paper towels in your pocket. This is something I do just in case; you never know when the toilet paper hasn’t been refilled! If you’re in a hurry, you might not notice until it’s too late (try having to use leaves to clean your pouch – that’s how I learned my lesson). The water bottle is used when you have really thick output that’s hard to get out. I personally use it all the time!

4. Talk to your teachers. I always, always, talk to my teachers on the first day of class. I let them know about my ostomy bag and that I may have to use the restroom more than other people. There have been times when I’ve had to use the restroom three times during a two-hour block class; it always helps when your professor understands what you’re going through.

5. Bring your own snacks. It’s always quite annoying if you know your system will have a problem with something but you’re incredibly hungry and the only food around is what your system will have issues with. It is a good idea to have whatever is easy to carry and won’t give your system and ostomy trouble with you.

6. Don’t feel like you have to tell people about your ostomy. Personally I love raising awareness but you don’t owe anyone an explanation about what you have. It may also be good to wait and get to know people better before telling them about your condition.

7. Always take good notes in class and make sure you have a buddy who can get you the homework in case you end up in the hospital (blockages happen!). Your professors may be forgiving but it still helps to get the work done in the hospital and not fall behind and have to play catch up. That can be quite overwhelming!

8. If your school has a counseling program, don’t be afraid to take advantage of it! It can help to talk to someone and school counseling is generally free.

9. Join extracurriculars and make as many friends as you can. It really helps to have a solid group of people on campus you can trust.

10. If you’re going out for an athletic team (especially contact sports), invest in a guard! It’s well worth it to protect your stoma. Just because you have an ostomy doesn’t mean you have to stop being active, but it does mean you need to take proper precautions.

11. Stay as far ahead in your classes as possible. There have been many times where I’ve had to go to hospital and the only reason I was able to keep up straight A’s was because I’d made sure to stay ahead of the curve.

12. For group projects, though it may be uncomfortable it helps to let your group members know that you may have to miss class sometimes due to medical issues. You don’t have to go into detail, but again, your group members will be more forgiving if you’re missing class and they know there’s an actual medical issue at hand. If they think you’re just slacking they may be inclined to not give you a great peer review!

I hope these tips help you! These are just some of the things I’ve learned so far in school. College can be a scary time (especially if it’s your first year), but it can also be a lot of fun!

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Image via Thinkstock.

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10 Packing Tips for People With Fibromyalgia and Chronic Pain

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1. Check the weather.

Get details about the area you are going to. I just do a Google search.

I like to check what the forecast is calling for, but I also check my destination’s weather has been like lately. This way if the area is having an unusual heat spike, I can pack for that.

But also…

​That heat streak may end, and I want to know I have packed extras (layering) that I may not have otherwise thought of — a must for those of us that are temperature-sensitive.

I normally use The Weather Network.

2. Start early.

Unless it’s a last-minute trip, take the time to get organized and start packing early. I don’t want to try rushing around at the last minute. It causes unwanted stress on my bodies and mind.

I try to pre-pack what I can on a better day, even spreading it out over a few days if needed. This helps keep the last-minute packing easier to handle, giving me time to rest before I leave.

3. Use a packing list.

Check it off as it goes into the suitcase, then just use it in reverse to remember to bring everything home.

I know, for me, getting ready to head home is hard. I am usually exhausted and in extra pain, a perfect recipe for fibro fog. With my packing list, it is one less thing I need to worry about!

I really like this free downloadable packing list on Pinterest. I used it last time I travelled.

4. Roll clothes.

For more space and less wrinkles. More space means you might be able to fit everything in a smaller, lighter suitcase. Pack layers and pack comfortable clothing (especially for down time).

I always use the smallest suitcase with wheels that I can fit all my things into, making it easier to handle myself, in case there is nobody available to ask for help.

5. Pack smarter.

Packing smarter means things take up less “real estate” in your suitcase and helps to keep the bags easier to handle.

Try space-saving bags to save space (sounds obvious, but I only recently learned this trick). I like the ones you can roll to reduce the air.

​Pick up some travel-sized bottles for things like shampoo, conditioner, mouthwash, etc. You can get these at any drug store, big box store, grocery store. Or pick up small reusable containers and just fill with products from home. ​​I bought some at a dollar store, and they have worked well.

Pack things in shoes (socks? something fragile?)

Use contact cases or prescription medicine holders to pack smaller things like earrings, smaller amounts of makeup, smaller bottles of OTC medication (but pack what you think you’ll need, plus extra just in case.)

Pack charge cords and headphones in glasses cases (you will thank me for this one!)​.

6. Comfortable shoes.

Pack comfortable walking shoes because chances are you will be doing more walking than you would on a typical day.

Yes, shoes take up valuable space in your suitcase. By packing at least two pairs lets you be choosy depending on the activity.

Pack on a pair of slip ons (flip flops? slippers?) for when you are not out and about — especially if going to a beach or pool destination.

7. Remembering the extras.

Consider taking items you use to control specific complaints. These things will be different for different people.  Dark sunglasses or an eye mask for light sensitivity or migraines. Ear plugs for noise sensitivities. Also to help get some extra rest when sleeping (will it be noisy where you are going?), I never forget these!

Bring a paper and pen to write down anything you want to remember if you struggle with fibro fog. A mouth guard if you use one for TMJ (temporomandibular joint) or migraines. Epsom salts for a hot bath to relax after a busy day. A CPAP machine for people with sleep apnea. A walking aide if you use one. I don’t use my cane all the time, but I always take it with me. I use it for balance, dizziness, leg weakness and on bad pain days. Microwave heat bags or heating pads.

Remember, the items we use at home will help to make your trip a lot more comfortable. Even if bulky, think about what you feel like when you don’t use these items. Decide what you think is worth taking.

8.  Pack “down time” activities (or pick some up).

There may be times where you are not up for an activity and choose to spend the time relaxing. You may have some hours to fill when you are on your own. I always travel with my laptop. Yes it is an extra bag, but it can be my sanity saver. I use a laptop backpack and don’t overpack it so it isn’t too heavy. Books, magazines, an e-reader. Download a few movies in case you don’t have wifi (shocker, not all hotels offer free wifi). Pack a hobby. If you like to do things such as knitting, coloring to relax, listening to music, writing in a journal etc. If it doesn’t take up a lot of space, take it with you!

9. Remember all your medications.

Trust me, there is nothing worse than getting to your destination and realizing you forgot a crucial medication!

​Pack the amount you need, plus extras — emergencies and delays happen… (I broke my ankle in July and couldn’t drive for two weeks. Thankfully we were staying with family.)

Pack your “sometimes” medications. I get migraines, less now, but when I do, they are bad. Remembering this medication can mean avoiding three days in bed.

Pack your prescriptions in original bottles (if flying) to prove the doctor prescribed them for you.

I will usually check that there is a pharmacy I use at home, nearby. Having refills of my medications on file reduces my stress. Knowing we have a backup puts my mind at ease.

If there is no pharmacy chain I use, I like to travel with doctor’s paper prescriptions. This way I am able to fill them at any pharmacy.

Pack a paper list of all: diagnosis,  medications,  doctors pharmacy information, allergies, any other pertinent medical information you can think of. You may need to provide these to a hospital or clinic if you need one. It’s hard to remember all the details in the moment.

If you have a medical alert bracelet… wear it!

If you use medical marijuana, check the laws before traveling with any. It is still illegal in most places.

10. Plan for the best, but prepare for the worst.

Traveling with chronic pain sucks, and no matter how prepared you are, you are probably going to trigger something. Knowing you are prepared to deal with these situations is such a relief when you need it!

Traveling is stressful for “normal,” healthy people, so it is only a given that it will do the same to us.  It is hard on the body, it is hard to rest, eating healthy can be a challenge, but packing doesn’t have to be…​

Follow this journey on Days Flutterby.

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