As someone that suffers from several chronic illnesses, I have had to learn to be flexible when vacationing. I have learned that I won’t always get to do everything I want to and that my body may need more rest than normal. I am writing this post is to share my adventure and to show the reality of vacationing with chronic conditions.
After a seven hour road trip we arrived in San Francisco at 4:00AM. To survive the long car ride, I wore a diaper, packed extra water, dressed comfortably, and brought my favorite pillow and blanket. The diaper is because I have a weak bladder and surprise bowel explosions. The last thing I want is to have an accident in my pants and the diaper reduces the stress of wondering if I will make it to the next restroom. The water is so I can stay hydrated. Comfy clothing along with my pillow and blanket keep me from suffering from more pain than necessary.
We checked into the Holiday Inn Express in South San Francisco and prepared to get some sleep. We did not ask for a handicapped accessible room as I don’t require use of my wheelchair in the room. We stayed in a room with two double beds and a desk. The room was average in size but too tight for a wheelchair to go past the entry area. Thankfully I was able to park my wheelchair in the entrance of the room where our luggage was supposed to go. So far my only real complaint about the room is that there isn’t anywhere to sit with a counter or table top and mirror to apply make-up or do my hair.
Once we were settled we all fell fast asleep. Our reason for trip is that my husband was there for business. He will be spending the daytime hours working with his customer, while my daughter and I have the days to do as we please. Evenings will be spent together. Our hotel offers a complimentary breakfast from 5:00AM to 9:30AM near the lobby. Since I went to sleep much later than I normally do and because of the additional pain that the car ride had caused, I missed breakfast this morning. I attempted to rise from bed to eat a few times without success. I was so tired that I hadn’t realized that I had answered calls from my mom and husband while sleeping. Had to find out what I said in my sleep later that evening. Yes, one of my talents is being able to hold a conversation in my sleep, too bad I never remember them!!!!
Finally at 2:00PM I was ready to get up and start my day. I got dressed thinking that we were going out for dinner, but secretly hoped I could convince my husband to order take-out or delivery. He must have read my mind because he too wanted to have dinner delivered! While waiting for dinner to be delivered I took the shower that I put off earlier knowing that my hair wouldn’t dry in time to go out. The warm shower was just what I needed. The shower had a bar to make getting in and out safer, along with shelves to put my shampoo etc… This made it possible to not have to bend and possibly slip while reaching for one product after the next.
We ordered Chinese take-out from Full House. I forgot to time them, but they arrived soon after I had finished with my shower. My only complaint was that they didn’t include forks with our order, only chopsticks. Don’t get me wrong, chopsticks are great, just not when you have hands that hurt and don’t always cooperate. Tip for ordering delivery or take-out when away from home: ASK for forks and other utensils you may need. Thankfully the hotel staff provided forks after we asked.
This hotel is located on the bay, so after dinner I rolled outside to watch the sun set. To my surprise I was ready for bed by 8:00PM!! My pain level was still elevated from the prior night’s car ride and knew that it would be foolish to push past my fatigue.
Day 2: This morning I woke up sometime in the six o’clock hour. After prying my daughter from her bed, we headed downstairs for breakfast. Thankfully I felt strong enough to do so on foot, because the breakfast room is small. There are actually two rooms. The first is where the food is located. Maneuvering a wheelchair in this room could be done if there were no more than 2 people in the room with me. The dining room is a different story. There was NO room for a wheelchair at all!!!!! And if I had wanted to roll up to the first table near the entrance I would have blocked the entrance. This creates a challenge for anyone not wanting to eat in the lobby or in their rooms. Note that the lobby did NOT have any table areas that a wheelchair could roll up to and use, they were all tall bar style tables.
After breakfast I returned to my room to fix my hair, apply make-up, and get dressed. That’s right friends; I went to breakfast in my pajamas!!! I bet the Holiday Inn regrets wanting guests to feel like they are at home!!! To my surprise I felt myself in desperate need of a nap after getting ready. Past experiences have taught me that NOT giving in to my body’s need for a nap is a recipe for disaster. So back into bed I went!
Thankfully my body only wanted a 90 minute rest. Since I chose not to keep the car with me and not really having the energy to do anything else, I had planned on using this day to catch up on some writing. BUT, I didn’t want to stay in my room all day, so my daughter and I packed up our electronics and made our way down to the lobby. Unfortunately there wasn’t a desk or table area low enough to sit at in my wheelchair unless I wanted to use one of their computers. Because I needed space for my computer and notebooks, I chose to sit on the padded bar stools at the tall tables. By working in the lobby, I had access to fresh coffee all day. I took a few breaks to roll outside to gaze at the bay and to soak up some sun. I was also thankful that there was a restroom located in the lobby as well. The restroom was ideal for wheelchairs! The handicapped stall was large enough to accommodate a wheelchair and a caregiver. The sink was far enough from the swinging door that I didn’t have to worry about slamming the door into anyone. There was more than enough room to move about the entire restroom with ease! This restroom is an example of what every restroom should be like.
My husband arrived at the hotel at 5pm and we left the hotel to have dinner. This evening we ate at BJ’s Brewhouse. I have a rule about eating out when visiting different places. That rule is that we try to eat anywhere that we can NOT eat at home, UNLESS we haven’t eaten there yet. So while there is a BJ’s located close to my home, we have yet to eat there. We ordered a pizza and dessert. The pizza was delicious. Since our hotel room had a fridge, we were able to bring back our leftovers.
After dinner I caught up on a few messages and was ready for bed. This time I managed to stay up until 9pm.
Day 3: This morning I woke up at 6:30am. Because my spine pain had decreased I decided that I would take the car today and do a little sight-seeing. I left the hotel at 7:00am to drive my husband to his customer and to find some decent coffee. The hotel coffee is okay when there is nothing else available. However, I prefer a strong cup of Joe in the morning and was thrilled to find a Peet’s Coffee nearby. Peet’s is one of the few coffees that doesn’t give me heartburn and my favorite brand to buy from the grocer at home. I just wish there were some Peet’s coffee houses in Southern California. Once back at the hotel, I finished getting dressed for the day. Like yesterday, I found myself needing a morning nap.
After my nap, my daughter and I had some leftover pizza for lunch and then we ventured out to find the Golden Gate Bridge. It felt great to finally leave the hotel for something other than dinner. The last time I was in San Francisco my only opportunity to see the Golden Gate Bridge was after dark, so I was thrilled to finally have the chance to see it during the day! Day or night, the Golden Gate Bridge is just breath taking. The sun was shining and the sky was clear as we neared the bridge and drove over it. Soon after we arrived at one of many lookout points fog began to roll in and over take the bridge. At this point it was only at the opposite end of the bridge. By the time we reached higher elevations the fog grew thicker and less of the bridge was visible.
Not knowing how soon I will have the opportunity to return, I decided to make the most of this day. At one lookout point there was a hill. At the top of this hill was a majestic view. I knew that my body would be angry if I climbed the hill, but I didn’t care. All I have to say is that the views of the bridge and city were totally worth every ache and pain. I could have stayed up there all day. I don’t always do things that I know will cause extra pain, but some moments are totally worth it.
I was feeling pretty good about my adventure and proud of myself for being able to share this moment with my daughter. But the bridge was just the beginning of our day of adventure. Next up was to find a restroom and iced coffee. Living in Southern California has made me no stranger to heavy traffic; however, trying to parallel park in heavy traffic is another story. An hour later I finally found a place with a parking lot. With our coffee in hand and empty bladders, it was time to start heading back to meet my husband at his customer.
I entered the address that my husband gave to me in the morning into my GPS and hit the road. One complaint I have with every GPS that I have used is that they don’t take heavy traffic into consideration when it comes to giving me enough time to move into the lanes needed for exiting or turning. Because of this I missed my first freeway interchange. I wasn’t too worried about it, as I knew that my GPS would reroute and I would be back on track soon. After rerouting, we were back on track or so I thought. Although it appeared that I was heading in the correct direction, I began to notice that the scenery was not what I had seen earlier in the morning. Soon I found myself next to a beautiful lake and knew right away that I was nowhere near the industrial area that I was supposed to be at. At first I assumed that my GPS was just taking a longer route since I had missed my first freeway interchange, so I continued to follow its directions. Soon my GPS announced that I had arrived at my destination.
UMM, I don’t think so! I wasn’t supposed to be on Rainbow Dr. in a residential neighborhood. I double checked the address that I had entered in earlier, and have no idea how it misinterpreted the address. Seriously, I see nothing similar with Rainbow Dr. and Lakeshore Dr.! Thankfully I wrote down a nearby intersection when I dropped my husband off and decided to enter that in instead, if that didn’t work I figured I would just have to have my husband try to guide me to him. Luckily the new instructions began guiding me in the correct direction, but I was now running late. Good news is that my husband was running behind as well and he only had to wait for a few minutes. I have to be honest, although being lost in an area that I know nothing about can be a bit stressful; I love adventure and having the opportunity to see more of this area than I would have if not for this mishap. My daughter and I had a wonderful time laughing and taking in the sights, and even more fun sharing the highlights of our adventure with my husband over dinner.
We were all exhausted and decided to eat near his customer’s building. Still following my rule, we ate at Red Robin. Yes, we have them in Southern California, but not near our house. And after having a day of adventures, I needed something a little more familiar for dinner.
Once again I was ready for bed in the 8 o’clock hour.
Day 4: Woke up with an extremely high level of pain. I knew right away that I would NOT be leaving the hotel at all today. And I was okay with that. I knew that yesterday’s adventure was going to increase my pain level, and I have NO regrets. I did what I wanted and am totally fine with giving my body the rest it needs today. This is why I tell people to be choosy when choosing a hotel. For me, having a view of the bay and all the amenities that I needed to be comfortable has made this down day still feel like a vacation day.
So far today has been spent writing, napping, gazing at the bay, and catching up on a week’s worth of General Hospital.
Tonight I am breaking my dinner rule. Tonight I just want comfort food and I don’t want to leave my bed. Good news is that my husband is in total agreement. Tonight we will be feasting on KFC.
This evening I went to bed during the 8 o’clock hour.
Day 5: Today is our final day in San Francisco. I woke up in the 6 o’clock hour to drop my husband off at his customer. Afterwards, I enjoyed breakfast at the hotel and returned to our room to pack. By 10:00AM my daughter and I had packed the car, checked out, and were ready to hit the road for another afternoon of adventure.
Our first destination was The Painted Ladies, otherwise known as the opening scene of Full House. Thankfully we had arrived early enough in the day to find free street parking. The park was beautiful and the views from every side were breathtaking. Next we attempted to find other famous homes. Unfortunately, each time we found one, there was nowhere to park. This made it difficult to snap pictures. Since I wasn’t up for walking and the hills were way more intense than any hill my daughter has had to push me up or down in my wheelchair at Disneyland, we decided to give up on famous homes and to instead find a museum, but not until we stopped for coffee.
I felt pretty lucky to find a parking meter with 37 minutes remaining on it as I pulled up to Starbucks. This would give us plenty of time to grab coffee, use the restroom, and walk up and down this tiny block. Or so I thought!!! The restroom was occupied when we entered, so I ordered our coffee. Then we waited in line for the ONE restroom. And we waited, and waited…. Finally the staff began banging on the door to let the person inside know that others were waiting and to make sure they were okay. Finally a woman flew out the door in a huff. She had been using the restroom as her personal office. She lowered the baby changing table and has used it as a desk! With my meter running low, we used the restroom and hurried back to our car.
Next we decided to find a museum. I entered the address into my GPS and we were on our way. The drive from Starbucks to the museum was terrifying. I have never driven on such steep roads in my life. When going uphill, I couldn’t see the lights, stop signs, or crosswalks. All I could see were clouds!!! Downhill wasn’t too bad, but still not fun either. As we approached the museum, I cheered when I discovered that parking was free! Then I noticed that the name of the museum had “Just moved” sign on its door. Luckily we were high up on a hill and had fabulous city views from the museum grounds.
By now I had been driving up and down San Francisco for over 4 hours and I was ready to escape the city and decided to start heading back towards where I would have to pick up my husband later in the day. On our trip back to meet up with my husband, we stopped to have lunch at a local mall. Next we looked for a park to waste an hour at. I have learned that it doesn’t matter where you are in San Francisco; there is NO avoiding steep hills! But traffic is better in some areas than others. At one park, there were giant power lines. We could hear the electricity running through the power lines, and to my surprise I also began to feel the electricity!!! I felt like the nerves in my hands were being plucked! I have never experienced anything like this before, probably because I don’t normally go near giant power lines. My daughter also began experiencing pain, like a headache, from them as well. After that experience, I am thankful that I don’t have these massive power lines near my house, and have made a mental note to make sure that I never live near one!
Finally it was time to pick up my husband and head back to southern California. All rules were broken as we grabbed dinner through McDonald’s drive thru. The drive home was longer than normal. One reason is that we were leaving during rush hour. Later after we were passed the commuter traffic, we were hit with a down pour of rain. The rain was coming down so furiously that it was impossible to see out the windshield no matter how fast we ran the wipers. After we passed the rain, we were hit with the worst traffic ever, which was unexpected since it was so late at night. It took us two hours to pass through a stretch of highway that would have normally taken us fifteen minutes. There was one accident after another. I stopped counting after we passed the fifth accident. No one slept. My daughter and I wanted to help keep my husband awake as he drove us home.
We arrived home at 2:30AM. We unloaded the car and fell into bed.
Summary: When vacationing with someone who is or if you are chronically ill or suffers from chronic pain, you MUST be flexible. Some have expressed sorrow that I didn’t get to do more. I replied that I am thrilled with everything I did! Stay in a hotel that has a view and all the amenities that you will need if you find yourself bed bound. Don’t be afraid to take chances, but also don’t go too crazy! Life is so much better when I focus on what I did and what I can do, rather than dwell on what I didn’t or couldn’t!
Counting my blessings,
Tagged: arthritis, California, California Adventure, chronic illness, chronic pain, coffee, degenerative disc disease, expectations, fibromyalgia, full house, golden gate bridge, handicapped accessible, health, holiday inn express, invisible disabilities, mental-health, MMJ, MS, painted ladies, psoriatic arthritis, San Francisco, spoonie, spoonies, tourist, wheelchair