A Big Announcement

I realized today is exactly one month since the last blog post that I’ve written.  Everything since has been written by my wonderful, caring husband (for Alex’s Caregiver Corner) who has been helping not only with covering blog posts, but also by being my rock during this hard time.  My health has continued to worsen since I was in the hospital, and I’ve been trying to balance work, family, friends, health, self-care, and The Misadventures of a Spoonie without much success.  This past month has been mostly filled with work, some family time, and interrupted sleep/painsomnia with some eating sprinkled in when food actually sounds good.  (Typically, banana bread with chocolate chips, in case you were wondering! 😉)  Thankfully, I love what I do and the people that I work with, which made the past month much more enjoyable, even though my health wasn’t great.

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Since before I went into the hospital, my husband and I have been discussing the possibility of me using FMLA and Short-Term Disability.  Because I enjoy my job and have workaholic tendencies, I have been putting off this decision, but have reached a point where I know my health will continue to decline if I don’t take this time to heal.  I feel really lucky to have the support system I do in making this decision.  Though it’s been difficult, having the support of Alex, other family members, close friends, my incredible supervisor/mentor, and the C-level team of the company I work for has made the decision easier.  With each person I spoke to and felt supported by, a weight was lifted from my shoulders.

This will be a big shift for me, but I am looking forward to having this leave – which begins next week.  My main focus during this time will be getting second opinions, trying to find additional answers, working with doctors to create a treatment plan that works better than my current one, and all the trial-and-error that comes along with it.  As many of you know how exhausting “doctor shopping” can be—and any travel that comes along with it—I will also be trying to be better at practicing better self-care and listening to my body.  Personally, writing content for The Misadventures of a Spoonie and The Great Bowel Movement is quite cathartic for me.  Being able to express my thoughts, feelings, pain, and experiences through writing helps to keep stress levels down, and I love being able to help others in the process.  Through this blog, I plan to document my experiences of being on FMLA, applying for (and hopefully getting) Short-Term Disability, doctor’s appointments, and any major changes in my diagnosis or care.  Plus, I have a stack of mystery novels to read while resting with my pups.

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Here’s to the next three months!  I’ll be posting again soon. 😊

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?

Brainfog & Painsomnia

Hopefully I can get through this post without losing my train of thought… Brainfog is sometimes my most frustrating symptom.  Consistently loosing words, names, or what I was going to say is worrisome to me – as someone who has been known to be good at remembering details.  It’s something I’m often concerned is going to get worse as I age.

For me, my brainfog is always at its worst when I’m in pain and/or in a flare.  It’s feels like my brain and body only has so much capacity, that everything else becomes a blur.  Typically, pain will lead to painsomnia, which just makes the fog heavier the next day.  Thankfully, I have developed a few coping methods to help me on days where I’m extra foggy.

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Staring out into the fog that fills my brain

Notes, notes, notes!  I take notes everywhere, all the time.  To-do lists keep me on track – I keep my work one on my computer and my personal and blog ones on my phone.  Anytime something pops into my head, I will try to jot it down as soon as I can before it gets lost in the abyss.  If I think of something important that’s work related, I’ll email myself notes.  At work, I have also started asking people to email me if they request something of me in person and I can’t make note of it at the time.  I also take audio recordings during some meetings – especially with fast talkers, as long as it’s okay with them.  I’ve found it also helps to explain fog to family, friends, and coworkers to help them understand.  My husband does what he can to keep me on track when I forget what I’m saying.  Thankfully, with a reminder of what I was talking about, I can usually pick up where I was in the story or conversation.  It gets dangerous when I have thoughts I haven’t yet started to get out, because then no one is there to remind me!

Though the fog can be frustrating, there are ways to help remember, even if you can’t clear the fog.  I hope these tips are as helpful to you as they are to me.