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.

Hospital Essentials

As I’m sure many of you understand, I never want to be in the hospital.  I never get much rest, am at higher risk of infection (especially if I don’t have a private room), and would much prefer to be home with my husband and pups.  Because of this, when I am in the hospital, I like to do what I can to keep entertained and comfortable.  I am typically kept overnight for observation – if not longer, so I bring my toiletries from home including gluten free toothpaste and Burt’s Bees Sensitive Skin face wipes.  My baby blanket tags along for the adventure, as I can’t sleep without it.  As a spoonie in the 21st century, I also pack my phone, computer, and both chargers in my bag.  Netflix and Hulu can help make a hospital stay better outside of visiting hours and distract from the pain.  Sometimes I feel silly bringing my big bag into the hospital with me, but it’s worth it to feel more comfortable while I’m there.

Depending on how long the stay is, I have my husband bring a change in clothes and coloring books when he visits.  As I said in “Keeping Cozy,” button up shirts allow easy access to my port while being much more comfortable than a hospital gown.

What do you bring from the hospital to help you feel more comfortable?

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**

Theme Parks: Spoonie Style

Though it can be rough to travel and enjoy vacations with a chronic illness(es), many theme parks across North America, Europe, and Asia make an effort to help make the trip a bit easier and more enjoyable.  Many parks have accessibility programs for guests with disabilities and/or chronic conditions.  In this post, I am going to cover the policies for Disney Parks, Universal Studios, Six Flags, Cedar Fair, and Merlin Entertainment parks and some tips that could be applied at any park.  I’ve researched and learned quite a bit about the policies at all five parks because I love theme parks & roller coasters, but Disney’s policy is the only program I’ve experienced firsthand.  Because of this, I will be speaking to their policy in greater detail and sharing my personal experiences.

Disney

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Disney’s Electrical Parade float

When you arrive at a Disney park, you will first go through the security check-point where the search your bag(s).  You are allowed to bring food & drinks (non-alcoholic) in your bag, which is especially helpful if you have food allergies or need to have food on hand for medical reasons.  Disney operated restaurants have great allergy menus at each location and take great care in limiting any risk of cross-contamination, so you don’t have to worry about that here!  (Disney Springs restaurants are not owned by Disney and their allergy menus and prep areas will vary from restaurant to restaurant.)  Since you carry your bags with you through the parks and on each attraction, I typically opt for a crossbody or messenger bag with a zipper, so I can keep it secured throughout the ride.  In addition to packing water and snacks, I also brought Clorox wipes and DripDrop.  Clorox wipes were helpful to have to wipe down 3D glasses for attractions that use them or cleaning tables at quick service restaurants before eating.  DripDrop is something I love to have on hand.  It was developed by Dr. Dolhun from Mayo Clinic and is an oral rehydration solution.  Walking around in the heat, this is a very effective solution to keep yourself hydrated. (Lemon is my personal favorite!)

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Waiting for dinner at the Mexico pavilion

Disney offers a Disability Access Services program for guests who are unable to wait in a standard queue due to a disability or chronic illness.  When you get through the turnstiles, head over to Guest Relations to speak with a Cast Member regarding DAS, and explain your condition and limitations regarding a regular attraction queue.  I personally used this program due to my IBD (ulcerative colitis), as I may have to leave the line at a moment’s notice to use the restroom.  Because of this, I am still able to wait the allotted time for the attraction, but I just can’t wait in the traditional queue.  Disney policy states that they cannot ask for proof or a doctor’s note for approval.  Once approved, your picture will be taken of you and each of your party’s tickets or magic bands will need to be scanned to link them to your DAS pass.  A maximum of six guests are covered by a single DAS pass.

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Meeting Dug & Russell from Up

Once you’re set up, you can go to a ride and request a return time.  You are only able to request a single return time until you’ve ridden that ride.  During this period, you can use your FastPass for other rides, use the bathroom, relax, eat, etc.  If you are unable to return to the attraction at your return time, you are still able to use that pass any time before the parks close.  Once you return, you will use the FastPass line to enter the ride.  Depending on the time of day and what time of year you’re visiting, the length of the FastPass line may vary.  Once we were in the FastPass line, our longest wait was fifteen minutes from entering the line to boarding the ride.  This program worked very well in accommodating my needs.  At Walt Disney World, FastPass+ is included in your admission, and you can begin reserving three FastPasses per day of your visit 30 – 60 days in advance, depending if you’re staying on property.  Once you have used your three FastPasses, you are able to select additional reservations one at a time.  Between FastPass and breaks to rest, we were able to enjoy the park and the wait times for DAS flew by.  If you do find that DAS doesn’t meet your needs, Disney recommends that you speak with a Cast Member at Guest Services to discuss the accommodations you need.  There may be some situations where they can’t fully accommodate your needs, but in general, Disney really does their best to go above and beyond to give guests the most magical experience possible.

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Me & my husband in the Rock n’ Roller Coaster queue

Typically, DAS passes are not given for those with mobility disabilities.  If a guest has another disability or illness in addition to mobility, a pass may be issued for that reason.  I ended up needing a wheelchair for about half of our trip.  Around 1pm on our first day, I was in so much pain and feeling so weak that I was not able to even walk to the entrance to catch the bus back to our hotel.  A Cast Member at One Man’s Dream in Hollywood Studios lent us one of the attraction’s wheelchairs to get me up to the busses.  We went back to the hotel to nap, and by the time I woke up, my husband had ordered a wheelchair from a third-party company and it had already been delivered.  I would try to do mornings/mid-day without the chair, and then we would go back to the hotel to rest and I would use my wheelchair in the evening.  Even though we were given a wide-width wheelchair, we didn’t have much trouble making it through most of the FastPass queues.  Tower of Terror (at Hollywood Studios) and Soarin’ (at Epcot) were both tight, but the chair was able to make it through.  I really enjoyed having a chair from a third-party so we could take it outside the park.  If I was at the point of needing my chair, I would have also had a difficult time walking from the park to buses to our hotel room.  All Disney transportation is wheelchair friendly, but we mainly used the buses because of the hotel we were staying in.  If you might be using a wheelchair, I would suggest requesting a hotel room in a building close to a bus stop.  Some properties have multiple stops, while others only have bus stops at the main building.

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Wheelchair selfie!

Universal

Universal Studios also has checkpoints at their entrance.  Though Universal has special menus for allergies, the do have a disclaimer that they can’t guarantee the risk of cross contamination.  Because of this, you may want to bring in food and water, in addition to any medical supplies you may need.  Universal allows you to bring food you need for medical or special dietary needs and up to two liters of water.  Bags are subjected to x-rays and/or additional inspection.  Bags are not allowed on rides, but Universal offers lockers near rides.  If there are medical supplies you may need at a moment’s notice, you may need to use multiple lockers or plan your trip to stay close to your locker.

Universal offers an Attraction Assistance Pass which provides guests with a return time comparable to the current wait time.  You are only able to get a single return time until you’ve ridden the ride.  After that, you can receive another return time for a second attraction.  Guests in a wheelchair may not need an Attraction Assistance Pass, as Universal has built most of their queues to be accessible to those using a wheelchair, but the Guest Services Team evaluates this on a case-by-case basis.

Six Flags

At Six Flags parks, guests must first get approval to bring outside food in for special dietary or medical needs.  If approved, Guest Services will mark and date the containers to show that they have been approved to bring into the park.

They offer an Attraction Accessibility Program to guests who have a medical need and/or disability.  To obtain the pass, Six Flags requires you to show a valid doctor’s note with the guest’s name, the doctor’s name, address, phone number, signature, and a statement indicating the guest has a disability or other qualifying impairment that prevents them from waiting in a standard queue.  The note must not include the guest’s diagnosis.  The guest is also required to provide photo ID.  With the Attraction Accessibility Program, the guest and three companions are covered by the pass and can enter through the alternate entrance.  They receive a reservation time comparable to the current wait time.  You have a fifteen-minute period after your reservation time to board this attraction.  After this time, another reservation must be made.  If there are more people in the party, they must wait in the standard queue.  Once they reach the front of the line, they let the employees know that there are other member of their party joining using the Attraction Accessibility Program.

Cedar Fair

At parks owned by Cedar Fair, outside food or water is only allowed for medical conditions.  These parks offer a Boarding Pass Program which allows guests to access rides through exit ramp or an alternate access entrance at a specific time.  Guests are given a piece of paper where wait times can be written on for each ride.  Wait times are based on the current length of the line and Boarding Passes do not offer immediate boarding.  Guests are not allowed to get more than one wait time, similar to other parks.  Four guests, including the one issued the Boarding Pass Program, are allowed to ride with the pass.  Additional members of the guest’s party will need to wait in the regular line, while the other four are able to rest or wait somewhere else.

Merlin Entertainment

Merlin Entertainment has theme parks across North America, Europe, and Asia.  Their park rules (including those regarding accessibility/ride access programs) vary from country to country.  Since Legoland is the only amusement park that has multiple locations, I’m going to start there!

Both their California and Florida parks allow backpacks, which may be searched upon arrival.  Guests are allowed to bring water, snacks, and any food required for medical purposes and any special dietary needs.  Both of these parks, along with the Malaysia location, offer gluten free and other allergen free options.

Both of the US parks offer a Hero Pass which allows the guest and one companion immediate access through the ride’s exit.  Larger parties are required to get a reservation time.  The Hero Pass is valid for six total guests.  The Malaysia location has the same policies with their Assisted Access Pass.  Legoland Windsor offers a Ride Access Pass for which they require documentation.  This can a be letter from the guest’s GP, Association Membership details, Council run membership, or any other forms that states the disability.  Disability Living Allowance (DLA) and/or Blue and Orange badges are not accepted since they don’t state the nature of the disability.  Guests without documentation will not be granted a Ride Access Pass.  Guests of the Windsor park using their Ride Access Pass are required to have a smart phone or tablet, as they system is operated online.  A maximum of four people (including the disabled guest) will be allowed to use this pass.  Most of Legoland Windsor’s queues are wheelchair accessible, but those that aren’t are accessible through an alternative entrance.  The park in Japan offers an Assisted Access Pass that allows virtual queuing for a single ride at a time.  They also offer the disabled guest’s companion free access if they have an ID Booklet for Disabled People issued by the Japanese authorities.  I could not find any documentation on an accessibility program at the park in Germany, but they offer a 4 EUR discount on standard entrance price for “severely disabled” guests.  A companion can enter for free if the disabled guest has an ID card with the letter “B” on it.

Though there are some differences between the accommodations at Merlin Entertainment’s three amusement parks in the UK, once you’re registered for a Ride Access Pass at one, it can be claimed at the other two parks with your confirmation number and a photo ID.  To register, these Merlin Entertainment parks require you provide proof of eligibility.  This proof can come in the form of a certified letter from your doctor or consultant, a letter from another medical professional such as nurse, a Disability Living Allowance (DLA) letter stating you’re entitled to higher rate mobility allowance dated within the last twelve months, or a valid Blue Badge along with an additional photo ID.  All three parks allow the guest up to three companions join them when using the pass.  Alton Towers requires the disabled guest to have at least one companion with them on each ride to assist in case the ride needs to be evacuated.  Both Thorpe Park & Alton Towers provide wristbands to those using the Ride Access Pass.  Chessington World of Adventures instead offers ten tokens that the guest can then use on the rides of their choosing.  At each park, the Ride Access Pass acts like a virtual queue.  Similar to other parks, you can only have one queue reservation at a time, and when your time has arrived, you can board the ride through the exit or a designated entrance.  Chessington World of Adventures website lists that forty-five minutes is the maximum wait time for guests using the Ride Access Pass.  I couldn’t find anything regarding allergy menus or offerings at any of these parks.

Gardaland Resort does provide special meals prepared and stored to protect against contamination for those with celiac disease.  This park also offers two types of access cards:  Easy Access Card and Priority Card.  The Easy Access Card is typically used by pregnant women or people with lower limb casts and one additional companion.  Though this card provides easier access, it is not priority access.  The Priority Card gives access to the disabled guest, one adult companion, and/or three children.  It was not mentioned that a medical certificate is required for this pass, but since they require it for the Easy Access Card, it may be good to have one on-hand, just in case.

I really hope this insight on accessibility policy helps you venture out and enjoy different theme parks.  As you can see, many parks make an effort to help allow everyone access to their attractions and adapt to assist those with disabilities.  Hopefully these programs can help make the most of your vacation!