Issuu

issue 03

may 2021

Spoonie

community | compassion | connection

Acknowledgement of Country In the spirit of reconciliation Spoonie Mag acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.

Disclaimer This magazine is not intended to be a substitute for professional medical advice and should not be relied on as health or personal advice. Always seek the guidance of your doctor or other qualified health professional with any questions you may have regarding your health or a medical condition.

On the cover

Ninav @nina_illust Nina is a London based illustrator but her forever town is Mostar in sunny Hercegovina. Check out her prints.

issue 03

contents may 2021 04 MONTHLY FEATURES Places that bring comfort to our Chronic Hope team

07 WHAT WE'RE LOVING A collection of things we're loving this month.

09 ARTICLES This month we hear from Megan, Shelly Cole Rasmussen, Carlene Bucher, Ampersand Health

17 FEATURE ARTICLE What does planning ahead mean in terms of food? Find out by reading our feature article by Talia Miele

18 RECIPES A range of savoury and sweet dishes perfect for when cooking is on the self care agenda.

23 ARTIST FEATURE PACE YOURSELF

Check out our artist feature: Shelly Rasmussen

PACING

Photo by Camille Minouflet on Unsplash

We live in a world that moves quickly. A world in which progression and pushing our limits is rewarded, while our health, both mental and physical is far too often taken for granted until it's too late. We are told our value is based in what we do and what we achieve yet this removes us so far from what is truly important. Wherever you are in the world right now, take note of how you truly feel. When was the last time you laughed from your belly? When was the last time you you watched the sunrise or set? When did you last place your barefeet on the earth? While the clock may be constantly ticking and your list of goals looming forever one step ahead of you, what is happening right now, in this moment? Return to this present moment and see where you truly are, feel what you truly feel.

This is where we begin. We begin here and now. In this issue, we invite you to learn more about the idea of 'pacing'. We begin to move away from the expectations of the fast paced world and look to our own personal needs. Needs that arise from our individuality and don't align with the 'machine made' schedule handed out to us. We bring you practical tips of how to 'pace' yourself to avoid burning out and live aligned with the rhythm that is true to you.

Chronic Hope 03

MONTHLY FEATURES

Photo Credit to Noah Conyer

PLACES THAT BRING COMFORT Pacing has its benefits. We should be able to slow things down a bit when we need it the most. Oftentimes, we get caught up in trying to stay on top of the latest happenings and never taking time for ourselves, that we forget about all the other benefits that can come from taking a step back for a moment. There is an abundance of joy that follows with seeking out places that bring you comfort- a piece of serenity. We asked our team at Chronic Hope for places they would go to pace themselves. 04

MONTHLY FEATURES

WHERE WILL YOU GO TO PACE YOURSELF? The team at Chronic Hope shares some of their favourite spots in nature to relax and unwind.

By the water

Nearly every morning I step out of my front door and walk five minutes down to my local beach. The ocean is my happy place. The place where I remember that my problems pale in comparison to the vastness of nature in the world. It’s my place to remember that peace exists.

Words by Jami Emerson To the park

I feel like I am able to think clearer when I am on my feet. If I feel overwhelmed or just want to take a breather, I usually go for a walk to my local park. There's something so calming about treading slowly at your own pace and watching other people walk by.

Words by Cathy Pravasenung 05

MONTHLY FEATURES

"Waterfalls wouldn't sound so melodious if there were no rocks in their way" Rishabh Gautam

By the waterfall

I grew up in the Blue Mountains and lived close by a short bush walk down to a little waterfall. Although the Mountains are filled with incredible places to discover, the one close to my house is still my favourite to this day. Sitting in the little cave, listening to the sound of the running water always helps me to reconnect to the present moment when everything else is moving too fast.

Words by Sophie Bennett

WHAT WE'RE LOVING Dreams Planner Dreams Planner is a 12-week planner which helps you become more passionate about things you love. Whether it's going on a fabulous adventure, owning your own business or getting out there and doing something fun, the Dreams Planner will help you become the best version of yourself. By using a planner, you will be able to not only make meaningful improvements in certain areas of your life but also improve your time management skills. Key features of this planner include: Daily inspiration quotes complete with practical tips and trick, a weekly challenge for each area of the planner to help you remove obstacles and improve your motivation. This planner is available on Kmart Australia for $9.00, alternatively you can find other blank planners from your nearest bookstore to start organising your goals.

Colour by Number Sheets

Colour by Number is a fun activity to do in order to pace yourself and engage your creative side. There are free sheets available for download on sites such as Crayola where you add whatever colours you wish, then share them with other people. This can either be a paper crayon drawing but is also great for iPad users as well as iPhone and Mac users.

Needlecrafts Activities like knitting, crocheting, or crafting can have therapeutic effects. It is relaxing and peaceful, almost as if you are accomplishing something meaningful. Needlecrafts can be fun and entertaining, but there are some things to know before you get started. They are not easy or simple to do, but if practiced with patience and curiosity, it can lead to surprising creations. We Are Knitters sells kits that will teach you how to knit or crotchet whether you are beginner or advanced.

E M I T IT'S

CE A P TO

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STORIES: THE RAW AND HONEST TRUTH

Set Boundaries for Your Body Before Your Body Sets Them For You Megan won a sci-fi short story contest when she was fifteen and got real smug about it. It’s been twenty years and she’s still smug about it. She’s been a spoonie since she was nineteen and her dream in life is to know what it’s like to not have any lower back pain. Megan has published nonfiction in Ravishly and short fiction in Luna Station Quarterly, Hello Horror, and the now-defunct JukePop Serials. Her collection of essays, This Book Brought To You By My Student Loans is available through Clash books.

I was diagnosed with Polymyositis and Rheumatoid Arthritis when I was nineteen years old. It felt so weird to be given stewardship of this malfunctioning body before I could legally drink or rent a car. "Go," everybody urged me postdiagnosis, "be an adult." Their version of adulthood did not include debilitating pain, expensive medication, or days I was so foggy and exhausted I'd leave the stove on and walk away or confuse the hell out of my mailman by leaving my wallet and keys in the mailbox. I was expected to drive this body through adulthood, and even worse, millennial adulthood, where your value is based on how busy you are and how hard you "hustle."

Being the good millennial spoonie who didn't let her diagnosis impact her life became my unreachable goal.

You want me to take a month of overnight shifts, even though disrupting my sleep schedule is the autoimmune equivalent of smashing my hand with a hammer on purpose? Sure thing! Oh, you have an emotionally draining and incredibly intricate project that needs to be finished in a week? There's no way my brain fog will screw that up so severely it comes up in my employee evaluation. Need me to help you move? Sure! Wasting what precious energy and physical strength I have moving your ridiculously heavy couch can't possibly bite me in the ass and leave me so painful and tired that I can't get out of bed for days.

I had no boundaries and no sense of balance. Everything was full speed ahead, and damn the torpedoes (the torpedos in this instance being my knee and elbow joints).

It's hard to set boundaries when you have an invisible illness in a world that eschews slowing down. The urge to explain my diagnosis in a way that didn't make it sound like a lie was overwhelming and sometimes still is. I realize now I simply could have just said no without explaining myself, that I didn't have to get permission from my boss or my friends or family to feel like crap. I was going to feel like crap anyway, and trying to push through it, explain it away, or wait for permission to slow down from people who didn't understand only made it worse. I finally had to start setting boundaries when my brain fog went beyond the comical and absurd spoonie fog, like accidentally putting guacamole in my coffee (do not recommend) and started being scary. I couldn't remember entire conversations, essential details, understand simple yes or no questions, and was worried I was too foggy to drive. I couldn't keep up with the pace of the world around me because I wasn't made for that pace. After enough cups of guacamole coffee, I realized that my body was setting the boundaries I was struggling to set, and if I didn't start setting my own, my body would keep doing it for me. Instead of taking the night shifts, I started having to miss work. I couldn't lift a laundry basket, let alone help someone carry a couch. And fun? Fun was something other people had. Just grocery shopping was enough to warrant a two-hour recovery nap.

It took me over a decade to be okay with the fact that I'm not made for high-speed hustle. I say no, and I don't give entire bio-chem lectures as to why. I started with small boundaries: I didn't volunteer for every project that came my way or offer to work late.

Just because I was available didn't mean I had the energy. Self-help books and podcasts and blogs and perky influencers with shiny hair all make it sound like setting boundaries is the easiest thing to do, but when you don't know what boundaries you need or how they apply to your diagnosis, where do you even start? You start by knowing you're in charge, not your doctors, boss, best friend, or partner. You. There's no User's Guide To Autoimmune Disorders (although I bet if there was, it would be boring as hell). There is no Good Spoonie award that comes from pushing yourself so hard you damage the already fragile ecosystem that is your body.

You do not have to ask permission to slow down. Set boundaries for your body before your body sets them for you.

- Kia

"Pace yourself, pace yourself, pace yourself. And take time to rest. I guess if you don't rest and rejuvenate, then you harden, and I don't want to harden." – Haley Bennett

5 Steps to Practice Pacing

My name is Shelly Rasmussen. I’m 38 and I live in Phoenix, AZ in the US. I was diagnosed with Fibromyalgia over 8 years ago. My husband and I have 2 rescue dogs: Sofi (black pug) and Lily (tricolor chiweenie).

Words by Shelly Cole Rasmussen

We’ve all been there. Excited by your renewed energy after a flare, you go to work on “catching up.” You end up depleted, exhausted, and frustrated at this cycle you can’t get out of. Learning pacing helps ensure you have a more consistent energy level, rather than dramatic ups and downs. Here are the most important lessons I’ve learned about pacing in the almost ten years I’ve been chronically ill. So here’s 5 ways to practice pacing. 1. Count and budget your spoons. The more mindful you are day to day of how much energy you have to start with, the better you will learn to budget this energy. Budgeting your spoons means knowing how much energy certain tasks take so you can prioritize critical tasks and activities. 2. Break everything down. Even the simplest tasks can be broken down into smaller pieces. I try not to clean for more than ten minutes at a time.

This may mean you don’t complete something all at once. Doing dishes can be broken down into categories: plates first, then bowls, then silverware. You can do this with just about everything!

3. Rest when you’re well. I was sick for a long time before I ever heard this. When you have a chronic condition, you need formal rest. Formal rest means dedicated time for whatever is restful for you. It’s critical to continue formal rest when you feel your best. The principle is that when you are well, your body has the reserves necessary to do the work of healing. Resting only when you’re already exhausted reduces exhaustion but does not promote healing. 4. Set boundaries for yourself and others. Boundaries are how you care for yourself. Don’t let other people’s expectations dictate your wellness. If you don’t have energy for something, don’t do it. You do not owe other people an explanation for why you choose to say no. You do owe yourself the opportunity to be well.

This is difficult to learn and must be consistently practiced over time. It can be challenging and emotionally painful to accept and enforce your own limitations, which brings me to #5.

Talk to yourself, and to your body, like you talk to someone you love deeply. Even if you don’t feel like you love yourself or your body deeply yet, compassionate, positive self-talk can help get you there. This may sound like: Instead of “I’m so frustrated! My body hates me!” try, “Body, I’m so sorry you’re hurting. I’m doing everything I can to take care of you so we can live a beautiful life.” This may sound radically different from how you think and feel today. It was for me when I finally realized how crucial this change was. I promise this will reduce physical, mental, and emotional pain.

If you let it, your chronic condition can teach you an important life secret many people never learn: Energy is our most important resource, not time. Learning to manage energy through pacing opens the door to more balanced living.

5. Practice self-compassion. The most important thing you can do is be kind to yourself. Managing all the emotions of being chronically ill is hard. 12 12

STORIES: THE RAW AND HONEST TRUTH

Boom or Bust

There is so much more to life than working.

Words by Carlene Bucher

I am a mum of two boisterous teenage boys. In my other (pre illness) life, I ran my own law firm and was a family court lawyer appearing in courts across the wider North Island of New Zealand. I was super busy and highly organised, a self-described, over-achieving nerd. I had my ducks lined up in a row and in alphabetical order, often before 7am each day.

Then, overnight in 2015, my world was tipped on its edge. I was diagnosed with Trigeminal Neuralgia, with face pain and migraines that actually literally brought me to my knees. I developed tremors, shaking and ataxia so badly that people asked if I had been day drinking. I wish, but the reality was that I had inherited another label, Functional Neurological Disorder. It was like my mind was willing, but my body certainly was not. I was so heavily medicated that I didn’t know which way was up half the time. Still, I battled on. I worked so hard that I had no energy for the rest of my life, believing that my responsibility to my clients and my business was far greater than my responsibility to my family and even to myself. Any down time was spent lying in bed, in the dark, in the quiet, trying to get some desperately needed sleep and relief from the almost constant, unrelenting, pain. By 2017, I realised that this pattern was unsustainable. I left my pride behind and started to wind down my practice, temporarily, pending the complete reset and recovery that I was expecting via microvascular decompression surgery.

Weeeellll, here we are now three and a half years on. I am either in pain, or out of my mind on medication. I accept, reluctantly, that this is my new normal and there is no cure for TN, just management options. That reset button I was looking for in 2017 has been blown to bits. Any attempts at exercise have made it worse and a day of activity knocks me on my arse! The work hard, play hard me of old has been replaced by one who cannot even commit to going out to dinner without needing three days to recover. The stuff that I used to get through between 6am and 7am each day now takes a full day to finish or remains to be carried over to be done another day. A pain psychologist taught me about the ins and outs of the various labels and, to use meditation as a form of pain distraction but the most valuable assistance has been from the Occupational Therapist. She has taught me the benefits of pacing. From using a whiteboard to remind and prompt on weekly happenings to breaking down tasks across the day/week, or reassigning chores.

STORIES: THE RAW AND HONEST TRUTH

This too, seems to be a work in progress. That temptation to push through on a good day and do all the housework is still very strong. I never learn, even though I end up sweating, breathless, and dizzy from doing too much or, flat out on the couch the following day.

I mourn for my old life and loved my job so much that I would give anything to be able to function sufficiently to return to the role but, know that the reality is this is just not possible and, I need to adapt my skillset to fit with my current ability.

The boom or bust phenomenon is very real and is proving far harder to break than you can imagine, especially for a (former) high achiever like me. It is still very hard for me to accept that it is okay to leave it for another day, especially once a job has been started. In terms of performance, where I was once operating at 12/10 now, I would give anything to get past a 3!

A lot of my identity was tied up in being “the lawyer”, now I see that this was just a small part of me that took up a lot of space.

There is so much more to life than working.

This story reads like a sad tale of doom and gloom. The reality is so much more complex than that. I don’t spend my days crying into a pillow or doused with misery. I am angry, frustrated, upset, anxious and devastated by my situation at time.

There are certainly days that are worse than others, but, there is joy to be found in the little things too. A definite positive outcome is that I have spent more time with my family, husband and two children, than ever before. My maternity leave with each of my sons was less than three months each and I have now been home with them (in a sense), navigating the pre-teen and high school years, for three years. The cats have never had so much attention and love.

Carlene Bucher

Do More and Feel Better? Let’s Talk About Pacing. Ampersand Health

Every single day there are things that we have to get done. From our jobs, to our personal lives, to everything in between, the list of things 'to-do’ can be long and ever-growing.

The worst part? Everything feels like a priority. We have to work, we have to take care of family, we have to keep our homes clean - we simply have to get things done. However, when we try to do all of these things as quickly and efficiently as we can, we often find ourselves burnt out. When living with a chronic illness, this feeling of having limitations can be even more obvious to us, because when we surpass our energy threshold, pain, fatigue and other negative symptoms can increase or worsen.

This leads to the question: Can we do everything that we want to do without burning out? The short answer is yes, definitely. How? Through pacing. No, not the kind of pacing you do when you’re nervous about something that’s about to happen, or the one you associate with waiting rooms and moments of panic.

Pacing is the act of spreading out your activities and actions across your day, taking time in between to recharge, with the ultimate goal of avoiding feeling burnt out, in more pain and experiencing more fatigue. The cycle that many people get stuck in usually looks like:

→ →

Overactivity which leads to pain and fatigue which leads to being forced to rest to reduce the negative symptoms. And it’s just that - a cycle. Thankfully, cycles can be broken. So, how do you start using pacing in your everyday life to achieve more in your day or week? First, decide what a sustainable day looks like to you. What can you manage to do that seems reasonable? Then, space your activities out from one another. If taking a break between your morning routine of getting ready and sitting down to work will help you maintain your energy - then prioritise taking that break. Remember, by doing things at a more reasonable pace with breaks in between, you will achieve more in your day and will avoid that feeling of ‘crashing’ that happens to everyone from time to time.

Once you get into a sustainable daily routine where you are pacing yourself effectively (and don’t worry if this takes some time to achieve) - reexamine it. Is there anything you could add to your routine without overwhelming yourself? Or, are you content with your routine and want to keep it the way it is? Both of these are absolutely valid options and you should choose what is best for you. Lastly, make sure to keep track of your routine and daily life. Whether this means writing a note on your phone each day or in a diary - having the ability to look back on what has worked, what hasn’t worked, how you have felt and most importantly how far you have come will only help you in the long run. It’s important to remember that although we may feel that we have to do everything on our own, it is OK to ask for assistance to take some of the load off of your shoulders. It’s almost like when we physically carry something that is heavy.

We don’t feel embarrassed or hesitant to ask for help - and this is no different. The most important thing to avoid? Comparing yourself to others. We’ve all heard it before and we’ll probably be hearing it for the rest of our lives, but comparing what you do to what someone else does, doesn’t achieve anything. We are all different, we have different lives, bodies, backgrounds, experiences, and because of this, we can’t compare ourselves to others because we’re all simply different. As you begin or continue your pacing journey, it may feel like you are doing less than you used to. And of course, nobody wants that feeling. But pacing is not about taking things off of your to-do list, it’s about doing them at a rate that works for you, your body, your brain and your overall happiness.

Ampersand Health is a socialimpact focused company, aiming to create a positive difference in people's lives. Through personalised digital therapies, they provide support to individuals so that they can self-manage their long-term conditions and improve their overall wellbeing. Check out their two self-management apps, My IBD Care and My Arthritis, as well as monthly community events, helpful resources and exciting opportunities. Follow them on Instagram to access upcoming webinars, articles, news and announcements!

You can achieve anything that you want to, all you need to do, is pace yourself. 16

Pacing means Planning Ahead Words by Talia Miele

Pictured are photos of Talia Miele's recipes that are mentioned in this article and are available online for you to try. Check out her website at https://www.taliamiele.co m Food is my passion. I can visit different countries and cultures from my plate, find comfort and soothing in a familiar dish, or express love by cooking for others and filling their belly. But although it is a necessary part of life, it can also be an inconvenient obligation. But just as we pace ourselves in other aspects of life, we can do the same with food prep.

Some of us Spoonies connect a unique tediousness to food. Many of us have illnesses that act-out like petulant children if we eat too much of the wrong thing or not enough of the right stuff. Those toddler-like illnesses will kick and scream, making us miserable from the inside out. It is common to worry about our diet to the point of exhaustion and anxiety. So how do we cook the good stuff for ourselves, particularly during flares when we feel as useful as a melted pint of ice cream? The answer is to plan-ahead.

The star (and workhorse) in my kitchen is the freezer, a pacing must-have. Besides the one above my refrigerator, I recently invested in a small mini stand-up freezer.

That’s how much I rely on it. Packed tightly, it is filled with frozen cauliflower rice for my “Low Carb Spanish Cauliflower Rice”, bags of vegan “chicken” for a fast, reliable protein source, and peas to microwave and mix with mint and sambal oelek for “Macho Peas”. When I’m not flaring and feel up to cooking, I double or even triple my recipes. Then I can divide them into smaller portions, label, and freeze. A small bag of my “Easiest Pasta Sauce… Ever” quickly thaws to pour over a box of store-bought heart-of-palm pasta or zoodles. When I am up for some baking, a loaf of my “Tomato Feta Soda Bread” comes together quickly and freezes beautifully. Later, I can thaw a wedge for dipping in some tomato soup. And I always have frozen bananas chunks and spinach for one of my “Rabbit Food Smoothies” which helps me eat when my appetite has abandoned me entirely, or to cope with nausea from medications. Having rows of healthy, flare-ready food I made means I can avoid the minefield of ingredients that make me feel worse. I know exactly what went into each meal.

Lending a strong assist to my freezer is a robust pantry. Multiple types of canned beans mean protein is never more than a few turns of a can-opener away. Chickpeas are delicious coated in my easy “Tikka Masala Sauce” can be used to bake grain-free blondies, or mashed into “Vegan(ish) Buffalo Chickpea Dip”. Canned San Marzano tomatoes mean no need to worry about fresh ones rotting while I wait out a flare. One shelf proudly displays bottles of healthy, avocado oil-based salad dressings lined up like good little soldiers. Combined with bagged sliced almonds, shelled sunflower seeds, and dried lowsugar cranberries, those dressings spruce up packaged salad mixes from the grocery store for a healthy veggie side dish. Although we may be tempted to figure out meals on the fly while down for the count, avoiding that trap is possible. All it takes is a bit of pre-panning. For years I’d get caught in the “food-flare cycle”; unable to cook because of a flare, I’d order unhealthy food. Eating unhealthy food would extend my flare. On and on it went. If we want to give ourselves the gift of eating right when we don’t feel well, investing time when we’re able is a welldeserved investment in ourselves. 12 17

Recipe by @positivelychronictravels

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5 INGREDIENT RAW FUDGE Ingredients 4 Tbsp Coconut oil ⠀ 3 Tbsp Coconut cream ⠀ 3 Tbsp Raw cacao powder ⠀ 2 Tbsp Rice malt syrup - adjust for your preferred sweetness ⠀ 1 scoop chocolate low FODMAP protein powder ⠀

Procedure: Combine in a bowl, transfer to a freezer / fridge to set ⠀ Top with any toppings you like to compliment the rich chocolatey flavour ⠀ I used shredded coconut and raspberries

RECIPE BY@THEFODMAPFRIENDLYVEGAN

19 ⠀

Teriyaki Chicken Bowl

Recipe by @candidlychronicerica

The Ingredients Teriyaki Sauce 1/2 cup Low Sodium Soy Sauce (there’s a gluten free option!) or COCONUT AMINOS 1/4 cup water 2 tablespoons Red Wine Vinegar 1.5 tablespoons cane sugar 2 teaspoons minced garlic 1 teaspoon ground ginger 1 tablespoon cornstarch (or ARROWROOT) 2 tablespoons warm water Ground Chicken 1 tablespoon olive oil 1/2 cup diced yellow onion 2 teaspoon minced garlic 1 pound ground chicken 1 cup finely chopped peppers 1 large carrots peeled and diced 1 green onion diced, for garnish 2 cups cooked white or brown rice

Procedure 1. Mix soy sauce, 1/4 cup water, red wine vinegar, sugar, garlic and ginger in a small saucepan over medium heat. Stir with a whisk until sugar is dissolved. 2. In a small bowl, whisk together 2 tablespoons warm water and cornstarch until cornstarch is completely dissolved. 3. Slowly whisk in cornstarch mixture into saucepan with teriyaki sauce and simmer until thickened. Remove from heat and set aside. 4. Heat olive oil in a large skillet over medium-high heat. Add diced onion and garlic. Cook until soft. 5. Add ground chicken into the pan and cook until chicken is half cooked. Add carrots and bell pepper. Continue to cook until chicken is no longer pink. 6. Pour teriyaki sauce over cooked chicken and vegetable mixture and stir. Simmer for about ten minutes to combine flavors. 7. Spoon chicken mixture over rice or noodles. Garnish with green onions and avocado. 20

ENERGISING BREAKFAST PORRIDGE Ingredients: 40 g oats 200 ml vegetable milk 1 tsp chia seeds 1 tbsp coconut flakes 1 tbsp sunflower seeds 1 tsp almond paste 1 tsp flea seeds 2 tbsp ground almonds 1 tsp coconut oil 1 pinch cinnamon

RECIPE BY@DAJANA.FOOD.BODY.SOUL

Procedure: Bring all ingredients to a boil in a pot for 2-3 min while stirring. Put the warm porridge in a bowl and enjoy with fruit, berries, nuts of your choice or coconut chips . 21

⠀

“You must always be yourself, and do things at your own pace. Someday, you'll catch up.” - Natsuki Takaya

ARTIST FEATURE Poetry by Shelly Cole Rasmussen

Life In the Cracks I live in the cracks The spaces between My body and my spirit My dreams and my reality My desires and my abilities You may find me Somewhere in the middle of How I look and how I feel What seems and what actually is What you expect and what I can do Life in the cracks means Floating halfway between Healthy and sick Abled and disabled Surviving and thriving

ARTIST FEATURE Too well to do nothing Not well enough to stay busy Enough energy to try Not enough to succeed Too strong to be truly weak Too weak to be truly strong I remember what could have been The dreams that slip away And new ones replace them So simple now: To exist how I want To have fewer limitations To see a bright future But for now I hope I strive I claw my way Out of the cracks

Shelly Rasmussen @shellynotmichelle Shelly Rasmussen is 38 year old spoonie based in Phoenix, AZ in the US. She was diagnosed with Fibromyalgia over 8 years ago and is married with two rescue dogs: Sofi (black pug) and Lily (tri-color chiweenie). She has been an instructional designer for 11 years. She writes employee training for University of Phoenix. Her work includes writing, editing, graphic design, marketing, etc. She was the editor of her high school newspaper, so she has been writing in some capacity for as long as I can remember.

Spoonie Mag is a creative and resource filled space for the chronic illness community.

If you would like to share your story, art, recipes, etc. Send us an email at: spooniemag@chronichope.org

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From the team at