Inside a Box Full of Spoons

ChronicALLY Box Is the First Subscription Box for People With Chronic Illnesses

1k
1k
21

Update: Previous versions of this article referred to the company as Box Full of Spoons. The name pays homage to Christine Miserandino’s “Spoon Theory,” which is based on a conversation Miserandino had with a friend. In their conversation, Miserandino used spoons to explain the limited energy reserve (spoons) of people living with chronic illnesses. The theory took off and created a community of “spoonies,” of which Godley, is an active member.

As of 8/18/16, the name of the company has been changed to ChronicALLY Box. According to Godley, “We wanted theme of the box to clarify who the box supports. With the new name, it is clear that the box is for women who suffer with chronic illnesses, without much explanation. The target and mission is still the same, and we believe the rebranding will reach more chronic illness suffers in the long run to bring products that will be their allies for all things health, beauty, and pick me up!” 

The company is also offering a smaller version of the box, the ChronicALLY Treat Box, for $27.95.

Ally Godley was tired of the medical bills and test results that regularly flooded her mailbox, so she created ChronicALLY Box – the first subscription box for people living with chronic illnesses.

Godley, 27, lives with multiple chronic illnesses including irritable bowel syndrome (IBS) hypothyroidism; polycystic ovarian syndrome (PCOS); generalized anxiety disorder and chronic fatigue syndrome, and understands the challenges people living with chronic illnesses face. Her company’s subscription box, which launches in August, is designed to make the beauty and health routines of women with chronic illnesses easier.

“The products are meant to save you energy on health and beauty tasks that can be tiring,” Godley told The Mighty. “For example, dry shampoo delivered to your doorstep, so you don’t have to wash your hair as often. You also save energy by not having to make a trip to the mall.”

Inside a Box Full of Spoons

While this is the first box for people with chronic illnesses, there are other boxes on the market that cater to different health issues, including a subscription service for people with cancer, and those facing depression. ChronicALLY Box, is similar to other subscription boxes in that it ships once a month and contains between four and six full size products. A subscription costs $43.95 per month and ships worldwide. Godley is also developing a smaller, less expensive box. To give back to the community, ChronicALLY Box will be donating a percentage of all proceeds to nonprofits related to chronic illness.

Godley hopes ChronicALLY Box will lift the spirits of subscribers. “I wish people understood that living with a chronic illness is an everyday battle,” she said. “Not only physically, but also mentally and emotionally.”

 

1k
1k
21

RELATED VIDEOS

JOIN THE CONVERSATION

Dear Professors, Here's What You Need to Know About Your Student With Health Challenges

73
73
0

Dear professors,

I enjoy learning a lot and am grateful for you taking the time to expand my knowledge. I want to be successful and am sure you want your students to succeed as well. I’m not a “normal” student though. You probably received the e-mail from the campus disability office about my accommodations. Yes, I am allowed extra time on tests, absence leniency, and the ability to leave the classroom during class. There are some things I can’t get accommodations for that I want you to know about too.

There are times when I can type and take notes fine. This is rare though. Most of the time I have a finger or knuckle dislocated and both activities are excruciating. This won’t be visible to you and I might not tell you because it happens so often. I often don’t know until the middle of class. If I suddenly stop taking notes, don’t freak out and assume I’m not listening. Chances are, I have turned on the dictation program on my computer to type for me.

I may show up to class in a brace or on crutches. This means I dislocated something — probably doing something that wouldn’t hurt a healthy person. I would prefer to not give you the whole story. I have been ridiculed enough for breaking my hand in yoga and playing charades. Just trust that if my injury will affect my work, I will talk to you myself about accommodations.

Sometimes I have barely dragged myself out of bed to be in class. I will not look my best on these days and will probably answer questions wrong if called on, due to this awful thing called brain fog. If I look like a zombie, please don’t call on me that day.

I am pretty good about communicating when I can’t be in class. There are times though where I might not get the chance to shoot an e-mail or make a phone call. I am not being disrespectful. I was probably rushed off to the OR for a procedure and they frown on taking phones into a sterile environment. The minute I can, you will hear from me.

When I do have an absence and a doctor’s note excusing me, please don’t ask for more details. If I feel like sharing why I was gone, I will. Some things are just too personal, especially if you are a professor of the opposite sex.

Lastly, you are privy to the information that I am ill. It is not something that I want broadcasted to all of my other classmates or professors. If I feel like sharing with them I will, but please do not expect me to share my experiences in class or assume other people know. I have to trust you with this information to be successful in your class. I know I am not your average student, but that doesn’t mean I am not trying my best to appear to be to everyone else.

I am a person first, a patient second.

I did not choose to be different, it just happened to be the hand I was dealt. Please respect my privacy and contact me directly for questions. Like every other student, I just want to do my best in your class.

Thanks,

Your Chronically Ill Student

73
73
0
JOIN THE CONVERSATION

The Hidden Beauty of Fighting a Chronic Illness

487
487
3

The limitations of chronic illness are many and they are unique to each person. The realities of “I can’t” are much of what makes depression so common in those who are chronically ill. For me, those “I can’ts” feel like a weight tied to me, holding me back from things that everyone else takes for granted. While so many complain about their jobs, I see them going to work each week and find myself fighting discontentment. I can’t work right now. I can’t support myself. I can’t.

Saying “I can’t” may seem to go against all the chirpy, peppy, go-get-em, reach-for-the-stars stuff we’ve heard since childhood, but I think there’s a lot of good in realizing and coming to terms with what can’t be done. It’s healthier to understand our limitations than to push until we burn out, right? Exceeding our physical limits isn’t an option when your body is already in distress. It’s a difficult reality that we face on a daily basis.

But for me and many others with chronic illness, it doesn’t end there. We learn to re-evaluate and prioritize. The truth is that we can’t do what many others can, but that doesn’t mean we can’t do anything at all. There’s the ambition ingrained in us that doesn’t die even when it’s hurt by frustration and depression. Maybe it’s the little kid in us who is fueled by being told we can’t do something. Maybe it’s our human instinct to “do.” To create. To add something to this world. Whatever it is that inspires us, chronic illness is the obstacle that tells us it’s impossible, but it can also be the thing that forces us to think outside the box and make our own path.

It’s the thing that pushes some of us to start our own businesses and find ways to work from home. Sometimes it’s about the satisfaction of being able to actually provide for ourselves in some way, even if it’s small. Sometimes it’s simply the need for an artistic outlet. And sometimes it’s a desire to make a difference, to add our voice, or to raise awareness. All of these things are what drove me to publish my book on the realities of chronic illness in February 2015. Without my own illness reminding me what I can’t do, I never would have discovered this was something I could do.

The reality is that chronic illness stinks. It really does. There’s no sugar-coating it. It’s the hardest thing I’ve ever had to deal with in my life and I know I’m not alone in that. We’re always fighting. Fighting to survive and to thrive. Fighting for cures and relief. We are so often battered and bruised, hurt and exhausted. But the hidden beauty is that this makes us some of the most creative, inventive and unique people. It makes us some of the best advocates, because we can’t do what everyone else does, so we see things differently. And whether we struggle quietly and privately or express our battles publicly, we are each uniquely gifted to pave our own paths around the “I can’ts” and create new ways to accomplish the ordinary and the extraordinary.

This blog was originally published on Chronic Joy.

487
487
3
TOPICS
JOIN THE CONVERSATION

5 Unrealistic Expectations About Pacing That Can Hurt Our Health

1k
1k
17

They say the key to happiness, sustaining our lifestyle and managing pain is to simply pace ourselves. We have all been in a place in our lives where pacing our actions would benefit us. Whether it be because we had the flu, were pregnant, broke a leg or we were just too stressed and we needed a break!

I have heard this advice from the first day I left the doctor’s office with my diagnosis. “You have to learn to pace yourself.” My immediate thoughts were  “Yeah, I can do that, that’s easy, what else you got for me?” You can tell by my response that this concept was completely foreign to me.

I had never once been told to pace myself in any of the activities that I did. The American way is full throttle, competitive, balls to the wall, aggressive, take what is yours, work hard play hard, multitask, be a champion at everything. If you aren’t first you’re last. Hell, even my generation isn’t pacing themselves with tailgating parties. We are bingers. We need instant satisfaction. And more importantly we are creatures of total independence.

So there I was: 34 years old. Successful. Miss Independence who put herself through college and grad school by nothing less than hard work and suddenly, I was told to slow down.

My attitude: Turn down for what?

So I didn’t. Clearly the doctors, physical therapists and even those who had the same illness did not know what this fierce redhead could achieve. It’s easy… mind over matter… push push push. Those chores and grocery shopping weren’t going to do themselves. Money had to be made, traveling for work must be done, presentations had to be delivered and people had to be counseled. It was as simple as that. My life did not have any room to slow down… I didn’t even know how to pump the brakes.

And I crashed.  

My body began to rebel. My pain began to soar and my energy was non-existent. I was going through the motions because I truly believed there was no other way to live my life. It took numerous people and my persistent instincts to literally stop me in my tracks. When I crashed, I fell hard, knocking the wind out of my lungs and my legs no longer able to carry me to all of these “important” responsibilities that I had.

It was then that I realized… I was important. My health was important.  Those responsibilities would fade and someone else was capable of doing those tasks. My body needed to heal. For the past 22 months I have been trying to figure out what that four-letter word means… Pace yourself. In the last six weeks during a battle between “how to heal” and “being a workhorse” I have determined that I am the worst when it comes to pacing myself. Since I am not an expert, I thought it would be fun to de-bunk those really unrealistic expectations we place on ourselves.

1. When you feel good, take advantage of the moment and get stuff done!

Terrible advice. I still do this. Every time I have a few moments of feeling good I dive headfirst into a project that is way too big. I usually end up sitting in the middle of a mess (literally) that now I cannot even clean up because I have pushed my body to the max. Projects this month have included organizing receipts (why!?), de-cluttering my bedroom, clipping coupons (seriously?) and trying to find plans and materials to build my chicken a coop. Who am I kidding? Sometimes, it is worth paying someone a few extra bucks. Teenagers in your neighborhood are always looking for side jobs, and think of it as helping today’s youth learn responsibility!

2. Volunteer to take on extra work, because honestly you could use the distraction.

Don’t bite off more than you can chew. Nobody is going to think less of you because you didn’t jump in and take on running the PTA, hosting a book club, working on the weekend! Usually after volunteering I am set way back from where I was when I started. This certainly only works as a distraction in theory. You can enjoy all of these things but you don’t have to be the ringleader! In fact, I guarantee you will enjoy them more if you aren’t in charge!

3. Nobody wants to hear you complain, so lie about how you really feel.

Not a smart move. Being honest is not complaining, you are simply expressing the truth and your reality. “I feel really great” will result in people being excited and then they start to suggest all sorts of plans that you might not be up for. Let’s go shopping! How about a three-hour movie! Or if you have the flu, you could end up sharing your germs. I recommend being honest and sincere and those around you will do their best to understand. Sure, those with who are healthy do not know what it means to be in chronic pain but they also don’t want you to lie about something that may affect your well-being. The same with being overwhelmed or stressed out — be honest and let others know how you are feeling.

4. If someone offers you help, turn down his or her offer politely. Nobody likes a mooch.

I just learned how to ask for help at 35 years old. I laugh when I hear toddlers say “I do it myself.”  You my friend, are not a toddler anymore, declaring your independence. We all know you can do it… but… that doesn’t mean you have to do it alone. I believe people want to help you, so let them! You know that realistically you can’t do it all, so why not share some of the load? And get this… we all know people feel pretty helpless when it comes to our illness. When they are able to pick up a prescription, push your wheelchair or grab some groceries for you, it makes them feel good as well. One of my very good friends told me years ago, “Kelly, let others help you! It is a gift they are trying to give you.” Nobody wants to have their gift turned down. And if it wasn’t a sincere offering on their part, then guess what? They won’t ask you again and you can move on!

5. You feel guilty for not doing “your share” of the household chores, so even though you are feeling pretty icky, you splurge all of your week’s energy on the doing the dishes.

Another one that always gets me! If we don’t already feel bad enough, we have to add guilt in there? Why do we do this to ourselves? If your loved one really loves and understands your condition/illness, then they probably don’t expect you to mop the floors every week. They live with you and see how life affects you everyday. Would you want your significant other to feel guilty about not washing dishes? I would never! And guess what, they are just dishes. It is just cleaning. You may even create more work for the person now that you have used up your energy stash for the week. If you are having trouble with this, try heading to couples counseling where a trained professional can help you and your partner to communicate to figure out what is realistic for you. If there is extra cash, hire a housecleaner twice a month. If cash is low, check out aid services through social services, which may be free to eligible community members, or perhaps a church would be eager to help.

The bottom line is that this isn’t a competition, although sometimes it may feel like it. This is unlike any other race you have run before, so it takes some time to figure out where you may struggle and how your body responds to the environment. Be kind to yourself and know you are doing the best you can. Our bodies are amazing and even throughout all of our chronic pain and illness… we are still here.  

Be patient with yourself. Listen to your body and your instincts and don’t let the false beliefs become your strategy of pacing.

1k
1k
17
TOPICS
JOIN THE CONVERSATION

What It's Like Working Full-Time With a Chronic Illness

8k
8k
3

For the past four years, I thought my main struggles with chronic illness affecting my day-to-day life would be easier once I graduated and began working. I was still in the process of figuring out what’s wrong with my esophagus, and didn’t fully comprehend how I would balance treatment with work. Being in the “adult world,” without homework or classes to attend, seemed perfectly more manageable to me.

However, I didn’t anticipate my health getting worse as I approached graduation, or needing to have surgery after only a few months at my new job. The initial excitement of landing a great public relations job working with my ideal clients faded, as I began to realize this would be harder than I initially thought.

Living and working in New York City means that commuting on public transportation is a guaranteed part of my workday. I’ve started picking up on who gets up for who on the subway. I outwardly look like a young, healthy person, so people do not always give me their seat. Some do, especially once the subway starts moving and I have trouble balancing. Although I am grateful for the seat, I am always still a little uncomfortable, and do get up if someone elderly or pregnant needs a seat.

The downside of that is my morning commute can tire me out, especially if I am standing for the better part of an hour. I started leaving my apartment earlier in the morning, to give myself extra time to take the non-express train, which is slower but usually a lot less crowded.

Fatigue in general is something I’ve been trying, and failing, to combat. Sitting at a desk all day, staring at a computer screen, with my body desperately needing to lie down, is not fun. I push through, which results in a very tired Ilana by the end of the day. This then means that I prefer to go straight home from work, crashing with Netflix instead of socializing, since I have no energy left at the end of the day.

I also tend to stay at work even when my esophagus is really acting up, because I need to save my sick and vacation days. I am a new employee still, and have a limited number of days I can take off without getting my pay docked. Since I am having surgery in about a month, and am not exactly sure how long I’ll be out for recovery, I am cautious about taking off from work.

While at work, I’ve had to learn how to appear functional even when I feel anything but. This includes eating. On a bad day, eating is pretty difficult, but I have to make sure that I do eat during work so I don’t get lightheaded. This is why I tend to keep a stash of gluten-free, esophagus-friendly foods in the little cubby above my desk. I sometimes get embarrassed about having a mini grocery store at my work station, but it’s worth not having to worry about having food to get me through the day.

In addition to my food supply, my desk also houses a smaller version of the medical supply stash in my apartment. I have extras of my various medicines, as well as throat drops for the constant burning in my throat from the reflux. I’ve also added tea and a bottle of honey to the collection, for when my throat really needs soothing. Even though it’s the middle of August, hot tea is still needed sometimes.

Speaking of temperature, another side effect of my condition and medications is that I am constantly cold. Like most city offices during the summer, mine has the air conditioning on full-blast, making it freezing inside even when it is 95 degrees outside. I’ve been keeping my favorite comfy sweatshirt at the office, but have been considering bringing in my fuzzy blanket for my lap. I’ve seen other people do it here, and I definitely work better when I’m comfortable, so why not?

I’ve had to be less shy about my issues with my esophagus, since I can’t avoid eating during the day, and whenever I eat, I tend to have esophageal spasms which cause me to make strange noises. My desk neighbors have gotten used to it, and are gracious about it, even though some of them still think I’m just sneezing.

I think the most important thing I’ve learned is in order to balance my health and my job, I need to find time to breathe. Whether that is a 10-minute walk outside on a day when there’s no time for a longer break, or, if I’m feeling up to it, a yoga class after work, it makes a huge difference. If I have time to gather my thoughts, I can return to my work feeling refreshed and ready to keep going.

I now know that my experience with my first post-college job is different than it would have been if I was not sick. But this is my current reality, and I am learning to adapt and succeed while taking care of myself.

8k
8k
3
TOPICS
JOIN THE CONVERSATION

How Do You Know Which Days Are 'Good' and 'Bad' When You Feel Sick Every Day?

1k
1k
2

There are good days and bad days when you have good health. If you are unfortunate enough to pick up a gastric bug, you would call this a bad day… even a very bad day! No health complaints, that’s a good day right? I often see people complaining of colds and viruses, as if they are the end of the world. Of course, when you are not used to feeling poorly constantly, these periods of illness are difficult and inconvenient.

Now let’s think about it from a chronic health perspective. How do you know what is a good or a bad day, when you feel very poorly every day? If we took our health as the sole reason for enjoying our day, we would never have a good day. In fact, life would probably be over for most of us. If I only saw my health issues as a negative or an inconvenience, I wouldn’t bother to even get out of my bed. So, what do we do to make life worth living? How do you cope with feeling unwell every day? How do you know what is a good and what is a bad day? How do we find the balance? Well, here is how I do it…

I have learned that good days are like gold dust. They are magical and rare! So I have devised a way of getting around not having good days. I have bad days and better days. For example, if on a Monday my joints are particularly bad, I’ve had limited sleep and my stoma is playing up leading to dehydration, I would call this a fairly bad day (I’ll add that this isn’t a “write off” day, though). So I now have a bar to compare the rest of my week on. Tuesday I wake with the same problems, minus the stoma trouble. I am now better hydrated and have had a bit more sleep. This would now be a better day. It’s not good, it’s not bad but there are some positives to take from it. Days like this are the ones I can mentally deal with. That small bit of hope helps me get through the day. In my mind, I feel that if one day has improved, maybe the next will, too. By thinking like this, I am never giving up.

Back in February 2014, I was at the lowest I’ve ever been. I had accepted I needed antidepressants to get me through each day. I had spent three years in a flare and been through two very difficult pregnancies. I started to believe there was no point going on. I had tried most medications and was getting nowhere fast! My gastroenterologist was very unhelpful and I had accepted I was never going to improve. Where can you go when you’re at rock bottom — up or out! My options had basically run out, so “up” wasn’t an option. I wanted out! I wanted to die! The only thing keeping me here was my family. Thanks to their unwavering love and support, I fought to get better care and changed to a center of excellence for my condition. Suddenly “out” became “up.” I had that little ray of hope again and it kept me alive… just!

From this point on, I decided that even the smallest bit of hope would be my basis for coping. I don’t want to just “survive,” I want to “live,” so by accepting my bad days and embracing my better days, I am giving myself that chance to live. On bad days, I resign myself to a gentle day. This may be staying indoors with my children, watching movies and cuddling. I often have friends pop over to keep me company. Anything that makes the day easier or pass by is helpful. On the odd occasion I will force myself to get out; however, this is often disastrous and leads to more bad days. Bad days command rest, so rest is what they get. For those with good health, can you imagine having to drop everything because your body demands you to? Not knowing how you’re going to feel day-to-day? You can’t plan ahead, because you never know if you’ll be well enough. You can’t predict good and bad days!

two photos of shelley lawes

So what happens when the day is a “write off?” These days are pure hell. I fear these days. Days racked with pain, fatigue, sadness and no hope. On these days, I literally cannot function. Just the thought of moving from my bed can induce floods of tears. My partner James is forever on standby for these days and he fears them as much as I do. It’s difficult asking friends to drop everything and care for the children when I have these days. So James knows that it’s likely he will have to leave work. I do everything I can to avoid this, but I often only want him around. Human interaction is the last thing I want!

Let’s talk about the good days now. Oh the glorious, beautiful, priceless days. I urge you all to never take good days for granted. Do not waste them, by sitting around feeling sorry for yourself. So what you don’t have money, so what you’re feeling fat, so what you have no plans for the weekend, so what you have washing to do? You are able to feel good and this is all you need. Get that washing done, call a friend and make plans, tell yourself you are beautiful and go for a walk (it’s free). It’s the small things that matter, so be humble and wish for nothing more than health and happiness! Good days to me mean being able to get dressed, showered, play with my kids, cook a dinner, clean my house, go out with friends, etc. I grab these days by the balls and enjoy every single second!

Good days remind me that I am truly lucky to be alive. They remind me that I have two gorgeous children, a wonderful partner and the best friends a girl could ask for. I appreciate my skin feeling normal, my scalp not being scabby, my bones not feeling like a hammer has hit them, my bowel digesting healthy food well. Just the smallest bodily function makes me very happy. So next time you wake up, stretch as much as you can. Wiggle your toes, stroke your hair, smile in the mirror, moisturize your body, dress to impress, feel the fresh air on your face, laugh lots, hug more and tell someone who needs a boost; that you love them.

Today is a good day. I feel wonderful and will let nothing bring me down. I am beautiful, I am alive and I love you all.

Follow this journey on Stoma in a Tea Cup.

If you or someone you know needs help, visit our suicide prevention resources page. 

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

1k
1k
2
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.