For the past month of my FMLA leave, I have been trying to balance living in the moment and doing things with friends and family while also taking care of my health. I’ve begun taking longer walks than I had previously over the past month and even tried some yoga for arthritis. Though it felt helpful at the time, I woke up in a lot of pain the following morning, so I haven’t felt terribly inspired to try it again. I have also started to take baths most nights. The hot water has helped to relieve some of the pain and combined with reading, it helps relax me and allow me to evade the ever persistent painsomnia.
I have also started to work on puzzles more frequently. Whether solo or with Alex, they are also a calming activity to use energy towards that helps me focus – especially in days of intense pain. Since I am not working at the moment, I have been able to put those spoons towards other things – such as visiting with family or doing housework. Chronic illness has really helped to put things into perspective for me. I never thought there was going to be a day where folding laundry or emptying/loading the dishwasher would be exciting, but as a Spoonie, I see it as an achievement.
Sometimes, I am still having trouble balancing the number of spoons I use. It’s not uncommon for me to be in the hospital the week leading up to my infusion. Because I had energy, I pushed myself too hard the week before my infusion, and though I had fun, I definitely paid for it. Dinner with former coworkers, dinner with my brother-in-law, his wonderful girlfriend, and her adorable dog, seeing my grandpa for the first time in over a year, hanging out with one of my best friends, and finishing the week with my Entyvio infusion and MTX shot made for a very lazy weekend. 😊 I worked on cross-stitch and dusted off my drawing skills for something my husband and I are working on. Once I finished the book Big Little Lies, I began the series which is really good so far! After some rest, I started the next week by having my friend and mentor over for dinner before she moves to start her new venture, which made for a really lovely night. Later in the week, Alex and I went on a craft date to Joann Fabrics to get materials for a few different projects – he is seriously the perfect person for me! Since 2+ hours walking around wore me out, I got to start the next day by catching up with one of my other best friends and watching The Bachelorette together over video chat. She is someone who has always been by my side, and I love that we can still connect, even when we’re not as close location-wise as we once were.
Medical updates within the past month haven’t been too vast. I had my first appointment with my new primary doctor – who I learned was originally training to specialize in GI during his residency. I also made an appointment with a new GI in my hospital system who my primary recommended. The only other notable update is that once the insurance company processing my Short-Term Disability claim received my files, they decided to look at my records and evaluate my case for both Short-Term and Long-Term at the same time, because they recognize that my conditions – individually and combined – make for a complex case. I was originally only going to file the LTD paperwork if I need it, but it is nice that I will likely know whether or not that would be approved prior to needing it. They reached out to my employer for additional information and requested my medical records from both my current GI and my rheumatologist. They have all of the information they need, and now I am just waiting to hear their decision!
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.
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.
Here’s to the next three months! I’ll be posting again soon. 😊
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.
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!
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.
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.
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?
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.
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.
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.
One of the first things my now-husband and I did once engaged (after telling our families) was pick a date. Since I’m on Entyvio, which typically has an eight-week infusion cycle, and we knew we wanted a fall wedding, we picked a few dates that would be in the middle of my infusion schedule. We chose this because my immune system would be stronger than immediately following an infusion, and if I were to pick up germs from either wedding guests or our honeymoon at Walt Disney World, I would have time to recover before my next infusion. Thankfully, the only thing I suffered from was additional fatigue, which I would take over catching a cold.
My husband proposed a week before I started with my current company. Since my previous company did not take me up on my two weeks, I had one week to plan as much as possible before beginning my new job. Our wedding was going to be in my uncle’s backyard right on Lake Michigan. Between this and our theme being Pixar’s Up, we had many DIY elements to our wedding. I enjoyed this aspect quite a bit, because I love crafting and it is one of my stress relievers. While you’re in the planning process, pace yourself, practice self-care, and lean on your fiancé and family/friends/support system. Some of my wedding party helped with crafts and my wedding shower favors. My husband also helped with much of this. We made our own mailbox, adventure book, Paradise Falls jug, compass escort cards, painted initials, and other items. If crafts aren’t your thing or stress you out, don’t go this route and find something else that is relaxing and cathartic to include in your wedding planning process.
We were planning our wedding while living 4 hours away from our venue and any potential vendors. If you are planning a destination wedding, I would highly recommend planning a trip to meet with your vendors before the wedding, if possible. We had a short engagement, so we only traveled once to meet with our vendors before traveling for our wedding. Luckily, my parents and other family live in the town we were being married in, which helped. We were able to much of the vetting with the vendors via phone and email prior to our visit and narrow down who we wanted to book. Our trip to my parents included a tasting with our baker, one with our caterer (who did a full plated meal of each appetizers and dinner for both my parents, my fiancé, and I), had an engagement shoot with our photographer, and a quick consultation with our florist. Though it was a busy weekend (that included me forgetting my purse that had my meds for the week at our baker’s kitchen an hour and a half away), it also made a lot of the other planning easier.
Though we planned quite a bit, and may have over planned, we still did not have a plan C. I had created binders with multiple checklists, an alphabetic list of guests to help organize the escort cards, pictures my bridesmaids had chosen as hairstyle inspiration, and sketches of where each table should go and each item on each table should go. As I said, I thought I was overprepared. Since we were having an outdoor wedding, our plan B was to use my parent’s event tent in the chance they called for rain. Instead, the forecast was calling for 100% thunderstorms all day. Thunder and lightning under a tent on the beach did not sound like the safest plan, so we ended up taking the Wednesday before our wedding off work to call different venues and locations to find something. Anything. At this point, we were even considering the library, VFW hall, or the old middle school gym – as long as it was indoors and could fit us and our 60 guests. Luckily, an event barn only 8 miles from our original location had a cancellation and was open all weekend. On our drive up north, I called all of our vendors to let them know of our change in venue. Our caterer drove out the day before our wedding to scout the new venue for setting up.
We were able to use the barn on Friday for our rehearsal, rehearsal dinner, and to set up most of the wedding decorations with our families and wedding party. They also gave us access to a condo on the connected golf course to get ready the following day. During set up, my husband and bridesmaids created a strict rule that I was not allowed to decorate and risk over-exerting myself while setting up. Though it was hard not to help execute the plans I had created, with how much pain I was in, I appreciated it. I was feeling so poorly that had it not been the weekend of my wedding, I would have gone to the hospital. The stress of final wedding items and finding a new venue last minute didn’t help. My fiancé set up a chair for me in the middle of the venue where I could instruct others in decorating by referencing the diagrams I had drawn. With the venue change, these diagrams and other items I had included in the binder helped smooth the transition, as they translated well to the new venue and helped make sure we didn’t forget anything. We loved our new venue, everything went amazingly, and we were very happy with the change. Learn from me and have some plans and ideas in place in case of emergency.
The biggest tips I have for day of is having your support system protect you from stressors, wear comfortable shoes, rest when you can, and make sure you eat! There were a few minor things that happened on our wedding day in final set up with the venue that were kept from me until after they had been resolved, and I am so thankful for that. My Maid-of-Honor’s boyfriend drove about 20 minutes to the nearest Joann Fabrics to get a new frame and also helped resolve other issues. Not needing to stress about a problem that would be resolved was lovely. If you have people who can act like buffer, it will help ease your stress on your big day. Making sure you’re comfortable is also very important, especially if you suffer from chronic pain. I wore flats with my dress and broke them in with thick socks around the house before the wedding. I didn’t even notice my shoes because they were so comfy!
Make sure wherever you’re getting ready has plenty of places to sit and rest and have anything you may need both for your health and for the wedding. During pictures and before the ceremony, I sat as much as I could and took the opportunity to conserve energy. During the reception, I took many breaks and tried to stay as well hydrated as possible. In addition to staying hydrated, I did my best to eat throughout the day. We were getting our hair done at the condo, and I was the first one to arrive to have my hair curled and pinned so it had time to set before styling. I forgot to grab food and needed to be there at 7:30am, so the first bridesmaid to arrive brought me eggs from a local café. Around noon, my mom and one of her best friends put together a cheese and fruit plater and brought gluten free pretzels and hummus for us to snack on throughout the afternoon. Once we were dressed and ready, we did pictures with me and my side of the wedding party, the first look, pictures of my husband and his side of the wedding party, all of us, and then family. After that, the whole wedding party went back to the condo to relax during the guests’ cocktail party before the ceremony. Our caterer made a special tray with a variety of the hors d’oeuvres and had one of the waiters deliver it to the condo for us. We had decided to do the whole wedding gluten free, as we did not want to take the chance of me being glutened on our wedding day. Our caterer was very understanding, took great safety precautions, and created a delicious menu. We thankfully were able to eat our whole dinner and our cake without interruption during the reception. Eating throughout the day definitely helped keep my energy up.
Lean on your fiancé and the rest of your support system during planning, prep, and the big day. It’s your day, so don’t plan anything that you and your fiancé do not want or would stress you out on your wedding day. Wear what makes you comfortable, rest, and make sure you eat and stay hydrated. And most of all, enjoy this celebration with those you love!
**Some of the photography is by Thomas Kachadurian**