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?

Wedding Planning with Chronic Illness

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.

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Painted initials

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.

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Clay “Carl & Ellie” chair cake toppers

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.

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Original Venue

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.

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Actual Venue

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.

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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!

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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.

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Resting and eating pretzels

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!

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**Some of the photography is by Thomas Kachadurian**