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!
Today’s post is a bit shorter than most, as I haven’t been feeling well. With pain top of mind today, I wanted to touch on what clothes I find the most comfortable on bad pain days.
When I’m in a lot of pain, the texture of clothing is a big thing that helps me. Though it doesn’t reduce my pain, soft, smooth, flowing fabrics help reduce any additional pain. Two of my favorite shirts are cotton/polyester blends that have been worn and softened through washes for years. When it’s colder, flannel button-up shirts are another go-to of mine. Especially with my powerport, button-up shirts are one of my go-tos for infusions and long hospital stays – definitely more comfortable than a hospital gown and it still allows people to my port site. I also wear a Christmas sweater (around the house) all year round because it’s so comfortable!
Though not flowing, I have also found a pair of soft leggings that have good coverage that I love. When I moved to my current company a few years ago, I took advantage of their casual dress-code and bought 6 additional pairs – so I could wear them all week. If I’m not at home in my sweatpants, I am wearing leggings with a soft shirt and a sweater. Though I still have a few pairs of jeans, I prefer not to wear them because my skin has been much more sensitive to rough fabrics. Ever since I began showing fibromyalgia symptoms, my skin hurts when wearing rough fabrics – even with my sweatpants when it gets really bad. The stretch of leggings is also more forgiving and as comfortable as possible when I’m distended.
What is your favorite thing to wear on bad pain days? Why does it help you?
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**
Being on multiple immune suppressants, especially in a year where there are so many flu-related hospitalizations and deaths, I work really had to control my environment and limit my exposure to germs. Even though it takes extra spoons, I always wipe down my desk, phone, and chair at work each morning and at any time it may have been “contaminated” throughout the day. I also shower when I return home from work or other outings. Because of this (and my health & fatigue), I am thankful for my work-from-home days and being able to stay at home most weekends, as it gives me a chance to rest and recover from the week. As I’m sure is the case with many fellow spoonies on immune suppressants, anytime there’s signs of an infection, my doctor has me go to the hospital for a slew of tests, and I am unable to take my medication until I’m in the clear. There have been cases where there was no infection, but I was still unable to take my medication while we waited for tests to come back. Though I fully understand this, not taking my methotrexate definitely worsens my symptoms and pain.
Thankfully, my employer is incredibly understanding. My supervisor is an amazing mentor and since she trusts me and my work, she has allowed me to work-from-home 2 days a week since my health has worsened this winter. This self-care has been so helpful and conserving this energy has allowed me to increase the quality of my work. She is also understanding when fellow employees are sick and allows me to work-from-home to protect myself. Last winter, a colleague on my team was sick when she came back from the UAE. My IBD specialist was very concerned and wrote a note that I should be working from home for 2 ½ weeks to protect myself from infection. Though the note helped, my director was very understanding and respected this anyway.
Earlier this week when I was remote, a co-worker I share an office with notified me that someone had been coughing near my desk, so I could take proper precautions when coming in the next day. He also offered to wipe down my desk after the coughing and again before leaving for the day – which I totally took him up on! With the flu and other winter colds circling around, I was nervous returning to the office the next day, but it was a necessity. Another precaution I take is wearing my Vogmask, though I had only worn it once before in the office. I typically used it for hospital trips, doctor’s office visits, and the occasional errand. Because the next day was pay day and passing out checks is one of my responsibilities, I knew I would have to take this extra measure for my health and safety. Though I was nervous of how team members might react or what they might say, I would much rather wear a mask than catch the flu that is going around this season. I only encountered a handful of employees the previous time I wore it, and I received multiple questions and comments. Because of this, I was a bit self-conscious going into the day, as I knew I would be interacting with all of our company’s employees.
Though I was nervous, I realized this was a moment I could embrace as a chronic illness advocate and use it as an opportunity to change the conversation. For a long time, my immediate team and a few work friends were the only ones who knew of my health hurdles. In the past 6 months, I’ve become more open and vocal about my story and experiences. Along with my Vogmask, I put on my “Ask Me About My Colitis” shirt from the Great Bowel Movement, whipped my hair into a Katniss-esque braid, and prepared for my day. Many people genuinely were concerned about my health – thinking I had caught the flu. When asked about my mask, instead of being ashamed, I was able to educate people about IBD and other autoimmune diseases and how the medication I take weakens my immune system. Everyone was extremely supportive, commented on the cute pattern, and some even said they are interested in getting a mask of their own with how bad the flu is this year. It was a very pleasant surprise – I know that I work with such high-quality people and this experience confirmed it.
I actually ended up not passing out checks, because though I had my mask, my team was still very concerned about me getting sick, and offered to do it for me. I was also told that I could go home and work remotely for the afternoon and Friday because of how many people were sick in the office.
Overall, this was a great experience! I pushed myself out of my comfort zone to advocate for the autoimmune community and I feel so proud.
**If you are interested in getting a Vogmask, “sickchicks” is a promo code for $10 off that is good through February. I am not employed, sponsored, or affiliated with Vogmask. This is just a tip I saw in a support group I’m in from someone else who is also not affiliated with Vogmask. I just wanted to pass the savings along!