What Is a Spoonie?

Over the past few posts, I have discussed caring for a spoonie, the stress of social situations, and helping a spoonie. After all this, I think it is important to explain what a spoonie is to those who may not know. Some people might know what a spoonie is already, but for those who do not, a “spoonie” is someone who deals with chronic illness and/or fatigue caused by various illnesses. My wife has ulcerative colitis, fibromylgia, rheumatoid arthritis, and other chronic conditions. These conditions drain her energy and make it hard to get through the day. Those with chronic illness and fatigue tend to use The Spoon Theory to explain their daily struggles.

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The Spoon Theory was created by Christine Miserandino and can be read at https://butyoudontlooksick.com/category/the-spoon-theory/. The basic idea behind The Spoon Theory is that people with chronic conditions only have a limited number of spoons to use in a day. Most healthy people have an unlimited number of spoons to use through out the day, however those with chronic conditions do not have that luxury. The limited number of spoons means that they have to conserve and use their spoons wisely. Everything takes spoons, though some activities take more spoons than others. A good example is getting up for the day. For a healthy person, getting up just means they have to hop out of bed and get ready. For a spoonie, each task takes spoons. Getting out of bed might take one spoon and walking to the bathroom takes another. Do you wash your face in the morning? Well that will take a spoon as well. If you have long hair and need to comb it, then it might take two spoons. Each task, even the simplest, takes spoons.

A spoonie only has a limited number of these spoons throughout the day, and unlike healthy people, spoonies do not recover spoons as the day goes on. If they wake up with only 10 spoons, that is all they have for that day. They may be able to borrow spoons from tomorrow, but that means they will start tomorrow off with fewer spoons. In addition to the limited spoons, their chronic conditions can steal spoons. Lauren might start with 10 spoons, but just dealing with the pain will use 3 spoons for the day. Putting on a happy face and using energy to pass as abled also takes spoons to accomplish. With any luck she will recover some when she sleeps, but even that is not guaranteed.

The Spoon Theory is probably the best way I have ever found to explain the struggles people with chronic illness deal with every day in regards to energy. The idea that once your spoons are gone, then your day is done is scary. I have finally gotten to the point where I can see the spoons being expended, and I know when Lauren is out of spoons, but it took a lot of communication between the two of us to get to this point. This is why spoonies need extra support and understanding. They work hard every day just to get the basics done. If you are caring for a spoonie, read The Spoon Theory and have a conversation with them about their spoons. Pitch in when you care, and take over anything that is not important for them to do. They are dealing with so much already, and they need your support!

Helping Your Spoonie

Some of you may already know, but Lauren has not been feeling well.  Between her lack of energy and the new added responsibilities at work, her spoons have been at an all-time low.  In an effort to help her, I figured I would make Caregiver Corner a little more regular.  In addition to writing more, her lack of spoon has got me thinking about other ways to help.

My first post covered dating a spoonie, this post will cover caring for a spoonie.  Spoonies are, in my opinion, some of the strongest people around.  Lauren has a strength that astonishes me at all times.  How she manages to do all she does through the day, dealing with all of the issues, all of the chronic pain, and the constant lack of energy.  I honestly could not be more amazed by her strength.  That being said, even the strongest spoonie needs the support of friends and family.

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If you are caring for a spoonie, I strongly recommend open communication.  Make sure they know you want to help and that you care.  Lauren and I talk often about how she is feeling and what she needs.  We also have many conversations about what is important for our family.  It is important to determine what you and your spoonie need.  For Lauren and me, the most important thing is for her to use her spoons on work first and then use the rest on things that make her happy.  Though we could manage without her working, she really enjoys the people she works with and the company she works for.  Without her working, things would also be tight, and though my job offers good healthcare plans, they are not as good as our plan through as her job.  I can take on all of the house work, cooking, cleaning, the dogs, really anything outside of work.

I take on all of these tasks because I care about her.  She means the world to me and I can see as she uses each spoon.  I know I cannot make her pain go away, but I make sure she knows that I am here to help.  That is the second thing about taking care of a spoonie, make sure they know you are there for them.  It can be hard for spoonies to ask for help, they want to keep their independence, and they can feel like a burden if they are not able to help.  It is important for them to know that you are there to support them.  Lauren loves to do things on her own without asking for help.  For example, I ordered the dog’s food the other day and it arrived in the mail today.  Rather than waiting until I got home to carry it in, she picked up a 25 lb box and carried it to the garage.  I know she is capable of doing these things, but I also know that every time she does this, she uses multiple spoons that she does not always have.  As someone who cares for her a great deal, it is hard to watch her use spoons on something I can do.

Finally, make sure you take care of yourself.  As the caregiver for a spoonie, it is easy to forget this important part.  You can feel like you have unlimited spoons and can do anything.  In reality, there is only so much time in the day and only so much can be accomplished each day.  This is something that took me a while to accept.  I wanted to help and do everything for Lauren.  I would take on more and more things, trying to get it all done.  I have come to realize that I need to prioritize the important things and plan out my nights and weekends, making sure to take care of myself, which allows me the ability to continue to care for Lauren.

Caring for a spoonie can be tough, but when you are madly in love with them it is totally worth it.   Love makes you do crazy things and gives you strength to take on things you never realized you could do.  What recommendations do you have for caring for your spoonie?

De-stressing Family Situations

Hello everyone, Alex here again. Lauren had her infusion today, so I decided to do another edition of Alex’s Caregiver Corner. Today, I want to talk about family and friends, those wonderful crazy people that helped raise you and made you the great person you are. Family and friends can be great, but when you are living with a chronic condition, or if you marry/date someone with a chronic condition, family can be stressful. Even the most well meaning family members can accidentally cause stress. Over the course of meeting, dating, and finally marrying Lauren, I have seen a number of different ways family reacts to chronic conditions.

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First, there is the “My friend cured that with…” aunt. This is the family member who means well and wants to help you get better, but thinks that they have the perfect solution that your doctors refuse to share with you. Normally these people will listen to you and you condition, then come back to you with a homeopathic remedy that worked for their friend. It is not easy to deal with these people. It is obvious that they mean well, but their so called solution will do nothing at best or hurt you at worst. My suggestion to dealing with them is to not get angry and start by explaining the condition you or your significant other has. Help them understand what causing the condition and what you have tried. I have been lucky that when people have made suggestions it was because they lacked an understanding of the difference between IBD and IBS. If they do not listen or if they go Agent Mulder on you and start spewing conspiracy theories about a secret society of gnomes who control the doctors, then change the subject and do not bring up the condition again. It is not worth wasting time on someone who will not listen to you.

The second I’ve run into is the “yes but…” grandpa. This family member can be told about your condition a million times, even witness first had what you or your spouse goes through, but will never understand. They will continuously think that the condition is fake or that they just need to tough it out. Personally, these are the hardest to deal with. In my opinion they can be told a million times the limitations or special diet you need, but still insist that you can eat the giant gluten filled pie with uncooked carrot and then down a big glass of milk. These people just do not want to understand. Be polite, talk to them, but do all you can to avoid there stress and keep your significant other away from them if you can.

The last is my favorite, I call this one the “great saint” mother. This is the person who just understands. They listen to you, provide you with a sounding board, do not over burden you, and are there when you need help or support. The best part is, these people do genuine research to understand you or your spouse’s condition. When you tell them about your lack of spoons, they are happy to step in and take care of things like mowing the lawn, walking the dogs, or just making you a good dinner. When you find friends or family like this hold on tight, they are the best to have around to give you strength and encouragement. They also they come in handy when dealing with the other two.

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Family and friends are wonderful – they are a source of laughter and happiness, and provide a support system when things are tough. However, not all family and friends can be helpful and some can add a great deal of stress. What have you had to deal with in your adventures with chronic conditions?

Caring for a Spoonie

As many of you know, Lauren normally writes a post every Tuesday, however this week has been rough.  Because of this, I offered to help and write something for her – creating Alex’s Caregiver Corner, where I will be contributing semi-regular posts. Today’s post is about caring for a spoonie and the adventures (or misadventures) that that can bring. Life with a spoonie is always interesting, as it is hard to predict what will come day-to-day and you must be flexible and understanding.

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Day-to-day life for spoonies, and those that care about them, is an adventure all its own. I do not know what to expect when I wake up every morning. Will today be a bad pain day? Will Lauren have the energy to get out of bed? What will she be able to eat today? These are all questions that go through my head every morning. I try hard to get a routine and make sure I am prepared for anything that comes up. During the week, I will wake up early to take care of the dogs, prepare breakfast, and get everything ready for our days. I work hard to make sure Lauren gets to rest and recover as many spoons as possible for the day. On the weekend, I make sure she can sleep in as late as possible and gets as much rest as possible. I will handle much of the house work, so she can use her spoons on something fun that she enjoys.

When caring for a spoonie, you may find yourself taking on everything out of love. You want to do the best you can to make sure they do not need to worry about anything. This is a noble endeavor, but a futile mission. The fact is, you are one person and can only do so much. You have your own tasks to deal with like a job, yard work, or general house work. Make sure you take time for yourself, as well as care for the person you love. It is a balancing act that can be very challenging, I can say that I have not even found a perfect balance after 3 years. What I have learned is that you need to practice self-care both mentally and physically. Find things you love and make sure you find time for those, sleep in once in a while, spend what time you can with friends, and most importantly reach out for help when you need it. Also, make sure you enjoy the little things, when you can, with the person you love.

A spoonie’s life is not easy. They can miss out on a number of things because they are sick, too weak, or are in pain. It can be just as challenging for a significant other. You can get lost in a cycle of care and recovery that can engulf your life, if you are not careful. Take time to enjoy the small things with the person you love. Lauren and I enjoy baking together, coming up with new sewing projects, watching television shows, or going to a museum. Recently, Lauren and I enjoyed a wonderful day at The Henry Ford Museum where I wheeled her around and we talked about Disney movies while we learned about the animation process for Pixar. I could not imagine a better way to enjoy the day! The two of us needed the time together after a long winter avoiding the flu and colds.

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Meeting Dug & Russell on our honeymoon

My final advice to anyone who cares for and loves a spoonie is to be understanding. You cannot always see the pain or weakness, and you will not always know how to help, but you can be understanding and listen to them. They will tell you what they need and need to know that they can trust you to believe them. Spoonies can be ignored and dismissed by so many, so what they need most from you is your support and understanding. When they are too weak to get out of bed, help them by making breakfast. If they say that they are in pain, they really are in pain. If they tell you that they need to go to the hospital, get your butt in the car and drive them. Most of all, when everyone around them dismisses their pain and symptoms, even doctors, listen to what they are telling you and fight for them. You are their rock and support, the person they rely on to help with day-to-day tasks, and the person who is there when doctors give up.

Caring for a spoonie can be challenging, but it is a labor of love. Lauren is the most important person in my life and caring for and helping her every day is done because I love her more than anything. Even through the all of her illnesses and the days she cannot get out of bed, we still enjoy every second together and share everything. Every day is full of love and laughter. I know on my worst of days, she can make me smile and when she is in terrible pain, I know I can make her laugh and at least make her happier. When we fall for a spoonie, we know what we are getting into, and everything we do is because we love and care about them. They are the most important people to us and need our full support, care, and understanding.

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Paradise Falls at The Science of Pixar Exhibit