Health Update · Other

Honeymooning While Chronically Ill

Thanks to lots of rest, I am finally starting to feel a little bit less rundown, have gotten back in touch with my doctors, and have had energy to work on writing this post about our honeymoon. I’ll post wedding photos once those are in.

We had 3 days between our wedding and honeymoon. I used one of these days to get fluids in attempt to slow down the crash. I was coming down hard and would by lying if said I wasn’t worried about my capability to make it to Mexico.

Fullscreen capture 672015 15516 PM.bmpIf you’ve ever wondered what blood pooling looks like, check out my feet in the above picture. Sometimes they’re more of a red than purple shade.

I got all packed the day before. For me, packing is stressful because if I forget a particular medication, something I used to alleviate symptoms, it’ll be horrible. I even packed a mini fan because I sleep better with the white noise. (Talk about a diva!) Who am I kidding? I’m me. Even if I were healthy, everything would have had to be packed just so.

We had to leave for the airport at 3AM. Since I require enough medication to knock out a horse in order to sleep, and typically am unable to fall asleep until 12:30-2:30AM, I decided to stay up. I didn’t want to be drugged from sleep medication and coping with flying, because unlike some people, I am usually incapable of napping, even while drugged, and knew I would not sleep on the plane no matter what. I also wanted my memory to be fully in tact because Jake had reluctantly agreed to wear our Mr and Mrs newlyweds tshirts. Lastly, I had to be alert in case the plane crashed. Jake refuses to learn how to survive a plane crash, so if it ever happens, it will be up to me to get us out alive.

The good thing about an early, midweek flight, is it was not full. Which meant …. I GOT TO LAY DOWN! Wooo! 🙂

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A perk of the wheelchair is when we arrived in Mexico, an airport employee came to push me while Jake carried our luggage. We didn’t have to worry about navigating where to go, communicate with people (he translated for us), or wait in lines. If you’ve ever been through Cancun airport, you know about all the people outside the airport trying to convince you they are with the company you booked a shuttle to your resort with. We didn’t have to deal with that either.

As you can imagine, we were really exhausted by the time we got to the resort. I was feeling quite ill. Fortunately, we’d gotten a steal and were able to join their “Diamond Club” which means they treat you like royalty. We got to check in a special, quiet lounge with hot pads on our shoulders. There were snacks for people who can eat food. It felt a little ridiculous to be so pampered, but who am I to argue?

It was noon and the room wouldn’t be ready until 3, so we changed into our swimsuits and found a spot in the shade. Before long, up came an extremely muscular European man who told us we’d stolen one of his seats. We told him we hadn’t which triggered an interogation, during which he realized we weren’t moving. He then walked in a circle around our two lounge chairs, trying to intimidate us into moving. He reminded my of a lion circling prey. It was incredibly hard not to laugh, but I knew doing so would be a bad move. So, Jake and I sat and chitchatted, pretending there wasn’t a giant man walking in circles around us flexing his muscles. I kept pretending to cough when the laugh would work its way up. Finally, after about 10 minutes of this, a kind Canadian woman approached him and informed him she saw us arrive, and we did not steal his chair. Someone else had done so earlier while he was gone and left. He stopped circling us. Thank goodness for Canadians and their desire to keep the peace.

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I never did lay in one of these, but they’re too fun looking to not share!

The hotel staff seemed to have thought it was incredibly kind and patient of us to not mind having to wait for our room. I don’t know what kind of jerk gets angry for be unable to check-in at noon when check-in is at 3… but anyways. I believe our perceived patience, combined with some wheelchair pity on their part, lead them to give us a free room upgrade! We went from an ocean view room with a butler to an ocean front room with a small swim out pool off the patio with a butler. It had a giant tub, rainfall shower, and was just beautiful!

IMG_1570I’d given them some information about my fluid needs when we checked in. When we went to Mexico last year, I had quite a bit of trouble getting across how much water I needed. It was a hassle, but not their fault since I don’t speak Spanish. I was determined the same thing wouldn’t happen this year, so I’d printed a piece of paper saying:

English
IMG_1788I have a medical condition which requires me to drink 5 liters of water every day to avoid hospitalization. May I please have a few cases of water brought to my room today so I will have plenty and will not end up requiring medical attention during my stay?
Español
Tengo una condicion medical que requiere que tome 5 litros de agua todos los dias Para evitar atencion medical. Por favor me puede mandar botellas de agua suficiente a mi cuarto hoy, Para tener suficiente agua y no tener que resivir atencion medical mientra me quedo con ustedes.

The wording is slightly dramatic, but I wanted to be certain I got water!

Other POTS Alert cards in Spanish.

The butler showed us the room and there were no less than 40 bottles of water in there. SCORE! I highly recommend asking someone who speaks the language of wherever you’re visiting to help you prepare papers like that to give hotel staff. My water supply was replenished daily.

IMG_1795Seeing as the resort was huge and I was quite ill from the wedding, I used my chair almost everywhere we went. The paving was smooth, which was nice because the place we went last year had stone walkways, which made for a bumpy ride.It was a bit of a game figuring out where elevators and ramps were, but we figured out. I also was able to take videos of us walking (well I guess technically I was riding) and talking. I appreciate the wheelchairs, but a few times when we went somewhere I could walk, I felt so free. I could go anywhere I wanted — woo! If I walked to the beach and then, after being there awhile, couldn’t walk back, staff would page our butler for us who would bring us the chair to the beach. Talk about spoiled!!

IMG_0241There were couches all over the place, so I was able to sit leaned back a bit with my legs in Jake’s lap. Sometimes, when the area was busy, resulting in people not having somewhere to sit, I felt rude taking up nearly an entire couch to myself. Jake kept telling me not to worry about it because I needed to be taking up the space. I decided he was right and I wasn’t going to make myself feel even more sick for the sake of good manners. I looked even more “not sick” to strangers than I normally do. This was due to the fact I gave myself permission to use some energy on doing my hair a little each day (that humidity!) and some makeup. I guess I also smile a lot for people’s idea of someone who has to frequently use a wheelchair/feels so ill, which made people think the wheelchair was temporary. Everyone would ask me “What happened!!?” then be shocked this isn’t temporary — it is just how I am made. (For the record — I hope it is temporary. However, it is hard to communicate that you hope to someday be healed, but won’t be in the near future, in a language you don’t speak. :))

We had loads of fun listening to music in the evenings on those couches. I put in earplugs in order to tolerate it. One night there was a show with aerial ribbons, which I love and could watch for hours. When I get healthy, I’m learning how to do them! One night we both went to the casino. Neither of us had ever been to one. I think we were both a bit underwhelmed by the whole experience, however it was fun to check it off our bucket lists together. We never did quite figure out how we did/didn’t win on slot machines.

legs up!
legs up!

Thanks to our room being so luxurious and me being so ill, many days we happily stayed in the room nearly the entire day, enjoying each other’s company. The service from staff was phenomenal. All combined, it made us feel as though we weren’t missing out anything at all!

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They surprised us with this. I’d never seen balloons in a bath!

DSC_0512I wouldn’t change all the lounging we did on our honeymoon — it was fabulous and fun — I would only change how I physically felt during it. Due to having pushed myself so far for the wedding, there was nothing left to push if I didn’t want to find myself in a Mexican hospital… and I hadn’t printed out a Spanish/English card for hospitals… Therefore, I had to be disciplined and not make decisions based only off my wants. I had to consider my needs. I tried to look at it as: if I was going to feel horrid after the wedding, at least I was somewhere amazing with my new husband! However, sometimes it’s hard to keep the attitude when all I wanted was to talk with Jake, have a cocktail, go for a walk using my legs, crank up some music, dance to the band, etc. but couldn’t due to symptoms. It was ever tougher on me mentally when I’d try to push my body to do something minor, and it would rebel back, strongly. Thankfully, I’d planned for nearly every contingency and had all of the medications I could possibly need on hand to make things as comfortable as possible. I never let my medicine bag out of my sight. Ever. Ever. Staff would make me ice packs if I asked. Even more thankfully, my husband is amazing, supportive, and encouraging. He never made me feel like I was letting him down.

ice pack for my headache
ice pack for my headache

There was 24-7 free room service. They had a fruit platter that was safe for me to it. We also packed snacks, so I had plenty of safe food. At night, we’d go out to eat. In a normal week for me at home, going out to eat is something I rest for the day of and the day after, so eating out daily felt wild! They did a wonderful job accommodating my dietary restrictions. I, of course, had a card explaining them. Nearly every meal, even at the buffets, was made in the back. We tipped heavily in hopes that by the end of the week, they all wouldn’t run and and hide when they saw us coming. It was tough to say no to the delicious looking food available — they had SOO many different types of restaurants. However, I knew it wasn’t worth feeling more sick over! So, most meals were a protein (fish or steak), bell peppers, tomatoes, salad, and fruit. It was all delicious and didn’t make me sick. Yay.

IMG_1802The toughest time I saw something I couldn’t eat was also the night I was most sick. I was so sick, there was no way I was going to be able to make it to a restaurant to eat and I needed more than fruit. I was pretty upset, not sure what I would do. Where is my gastroparesis when I need it!?

Fullscreen capture 6102015 20000 PM.bmpJake took control by calling our butler and explaining the situation (lol). She came to the room and, at my bedside, took an order for what I had been getting at the steak restaurant, then personally went and ordered it and brought it back to us. She was such a sweet woman and definitely our favorite butler. Accordingly, she arranged for a surprise with the food she brought us… Delicious, adorable, chocolate covered strawberries. Chocolate covered strawberries are my FAVORITE, however the milk in the chocolate they used would have upset my stomach. After quite a bit of staring at them, and even some sniffing, I set them in the fridge. When we checked out the next day, I left a note next to the plate telling the maids I hoped they would eat them!

At one point, I was so desperate for a Gatorade I bought a few from the gift shop for roughly $5.00 each. They know what they’re doing. 😀

Like last year, I made Jake participate in what will be our beach tradition as long as we live: stepping in the sand and writing the year. As a bonus, this year I had the sash from the door of our room. I know, gag.

DSC_0517I could have stayed forever! If I could do it all over again, I’d have made the trip for 14 days. That way, once I began to recover after arrival, I’d have had more time to experience everything.

There was a wheelchair IMG_0695IMG_0692parking spot in the waiting area at the airport. It is a genius idea because it made it so I wasn’t sitting at the end of a row of regular chairs, out in the middle of the walkway, but I found their need to make it so people parked there have a “handicap” sticker above their head amusing.

The plane on the way home was even more empty than on the way there, which meant I got a full row of seats to lay flat across. It was HEAVENLY. I don’t know what I’d have done if I’d had to sit up the whole flight.

All week, I forwent my compression stockings because it was so hot that I’d have passed out from being overheated. I was a good girl and, right before the plane took off, put them back on. They’re black and looked kind of … unique… with my black yoga shorts. I heard the flight attendants talking about them, saying they’re cute and they wonder where I got them. (I get Jobst Opqaues brand, thigh high, 20-30 mmhg).

I’ll finish off this post with a picture of Jake and I each respectively participating in one of our favorite activities. Me laying flat, him enjoying a Summer Shandy. Ahh — living the life.

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11 thoughts on “Honeymooning While Chronically Ill

  1. I’m so glad you got to have a fantastic honeymoon! You did a great job of dodging symptoms with the IV fluids & constant leg propping. Done like a professional POTSy!

    Liked by 1 person

  2. sounds like you had a great time and i am so happy for you and jake! you are such a great example of someone who other’s can look up to. you can really handle your symptoms well and are willing to do a certain amount of suffering if it is important to you. i admire you and respect you.

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    1. It was wonderful. I took lots of videos when we were doing nothing in particular — listening to a band, sitting by the pool, and so on. Those are my favorites.

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  3. I love reading your posts about adventures. They are a reminder that even though living a life being chronically ill is always a task; we can still find ways to enjoy life as we are meant to. So happy you had a beautiful trip together!

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    1. Yes we can!! It doesn’t mean you won’t be moaning, “Whyyyyyyy?” for weeks afterwards, but we can do more than we’d think if we plan carefully.

      Speaking of this…. How did you hold up during your friend’s wedding!?

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      1. Thanks for asking, It was a beautiful event! Extra meds and sitting with my feet propped every opportunity I had got me through it. I am totally paying the price now, but all worth it. Next hurdle is getting things packed for our move next month! I over did it the beginning of the week packing things which left me bed bound for two days, but up and (very slowly) doing minor things today. Going to PM you later with some move details. 🙂

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  4. Thank you for writing this up! Our honeymoon is the one thing I’m stressing about! I’ve had a rough few months here and we’ve decided to go to St. Maarten. Mexico looked lovely and I’m so glad you guys got to go!

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