Vacationing while Ill

I have had a bit of a hard time writing this post. I don’t want to come off “Woe is me! I can’t vacation the way I want to! Wahh! Wahh!” For a few reasons: 1) I know that I am blessed to have the means to take a vacation and 2) I am blessed to have enough health to leave my couch/bed for a week. Not all people with ME/CFS (and other chronic illnesses) have one or both of these blessings. That being said, I did want to share what it can be like for those of us who find our health less than ideal when it comes to taking a vacation. So please excuse me if bits of this come off like “Woe is me! I can’t vacation the way I want to! Wahh! Wahh!” Let’s get started:

Pause. Before I get started talking about our summer vacation, I wanted to touch on something that is incredibly disheartening to hear from people (friends and doctors alike) and a big misunderstanding about the chronically ill. I will share a short story of an experience I had with a doctor to show the most poignant moment I’ve had with this. When I first arrived in Boston, we still didn’t have the ME/CFS diagnosis. We were aware of the condition and had an appointment scheduled with a specialist, but we were still looking down different avenues of doctors in Boston to see if any of them could shine some light on my health situation. I went to one rheumatologist (different from the other one who insulted me at Harvard), and he asked what my daily routine looked like. I described how I got up, worked for 3-4 hours, stretched, did my physical therapy and then pretty much rested the remainder of the day. He paused before exclaiming “I want your life! That schedule sounds amazing!” Now I am not sure where this doctor was coming from, but I felt completely invalidated. He was basically saying “Why are you here? Your life is perfect!” I wanted to ask “Were you not listening? I just told you that I am in constant pain and can’t stand to sit up for long periods of time because of crushing fatigue and dizziness. You want my life? Are you kidding me?” To be fair, if you look at my life on the surface, it does sound pretty awesome. I wake up when I want to and do exactly what I want to do all day. Except I don’t do exactly what I want to do. You might think that you want to hang out all day, but trust me, most of you don’t actually want that. And even if you do want that, you don’t want to be in constant pain and too exhausted to make yourself something to eat when you’re starving. And then even if you do manage to make yourself something to eat, there is always a chance it will make you feel like tiny gremlins escaped into your stomach and are wreaking havoc on your entire digestive tract. Like my GI system did them some kind of personal and unforgivable insult. I don’t know how my organs managed to insult a colony of make-believe gremlins. That analogy got away from me…

I share this thought because it ties into vacationing. You may think you want a super chill life where not a whole lot is expected of you except to take your meds on time (which I STILL can’t manage to do) and take a nap. Except when something comes up you WANT to do but can’t. We have lived in Boston for almost a year. Have I seen the whales? No. Walked the Freedom Trail? No. Taken a bus tour around the city? No. Gone to any museums? No. Gone to watch the spectacular 4th firework that were literally across the street from where I live? Also no. We had some friends visit recently, and they asked me what my favorite thing I have seen was. I pointed to the tree outside my window and laughed sheepishly. I mean I love that tree. I’ll take a picture one day and show you. But I also think Bunker Hill or Mike’s Pastry would be cool to check out too.

So this was a really long intro to what will be a summary of Brandt and mine’s summer vacation. We went to the Berkshires for a week. For those of you who don’t know (and I did not prior to moving here), the Berkshires are a region in western Massachusetts where the Boston symphony goes for the summer. There is a huge music festival called the Tanglewood Music Festival (classical music festival, don’t get too excited friends) where solo performers as well as orchestra groups come to put on concerts. Our purpose for coming out was to see Brandt’s favorite violinist Hilary Hahn perform. We decided to make a summer vacation out of it! We took the three hour drive from Boston and stayed at a charming bed and breakfast for the week. We were the youngest people there by about 40 years? Give or take a decade. We quickly saw that the crowds usually attracted to the Berkshires are 65+ Northeastern bougie folks. And that is about the pace I can keep up with. Think of your weirdly rich great aunt who doesn’t move much from her overstuffed armchair because it will upset her purebred Maltese named Pierre, also she just had her hip done. That’s about the level of activity I can manage.

So the first two days I managed okay. I was at my “normal” levels of fatigue and pain. We went out to dinner upon arrival on Monday evening and then played games on the grounds. Tuesday I worked in the morning, and Brandt went on a hike. We then hung out at the pool, and I even swam around a little bit! We then read our books outside for a while before heading out for a picnic and outdoor show. We saw a rather interesting interpretation of Shakespeare’s The Taming of the Shrew. I was able to lay down for most of the performance, as we were outside on a blanket. The weather was perfect and the bugs were nonexistent. It was a great night!

Wednesday rolls around, and I am already feeling pretty beat up. I’m too tired to go to the pool or play games. I need to rest because that evening is the Hilary Hahn concert, the whole reason we made the trip! I rested as much as I could, but even then I felt miserable the entire night. The concert hall was open in the back, so many of the concert-goers could lounge on the hill behind the building. It was actually a pretty cool set-up! But we were seated in the building on the most uncomfortable chairs maybe ever made? It was also hot. One of my many weird symptoms is an inability to cool myself off. I overheat very easily, and this concert hall was stifling. I felt so bad for Hilary up there whipping her violin bow around in a full ball gown! I was trying my absolute hardest not to appear as lousy as I felt. Brandt is very perceptive and also very thoughtful. He offered to leave during the intermission. I could not do that. He gets to see her maybe once a year, and here I was ruining the experience. I felt so guilty and upset that he couldn’t sit back and enjoy the concert because he was worried about how I was doing. We did stay for the entire concert, and it was truly amazing. She did an entire Bach recital, and the music was just stunning. It was the only thing keeping me upright and in my chair. There actually WAS a patron laying down on a mattress that we could see from the balcony. I wanted to go down and tell him to skootch over and make some room for me.

Thursday made for a pretty chill day. This was the day I wanted to go horseback riding. Hah! Like that was ever going to happen. Brandt was a good sport about “seeing how I felt” knowing full well there was no way I’d be able to go. We were also supposed to go on a canoe tour in the national park close by to observe the wild-life. I could simply not sit up for that long and was also hurting too much to sit in the canoe. So we cancelled that trip so that I could rest. We both fretted over being the only ones scheduled for that trip and some eager, nature-loving college kid sadly packing the canoe away. But that extra rest allowed me enough energy to go and see Into the Woods the following afternoon. We both really enjoyed it! The space was small and intimate, and the actors were fabulously talented.

So all in all, we had a great week. Even without being ill, these are the kinds of things Brandt and I like doing. We love concerts. We love musicals. We love playing games together and reading. But we would have loved to have done more. We also both love museums. This place is weirdly packed with them. There are several day trips we could have taken. We only enjoyed the pool one day for a few hours. I wasn’t able to go hiking with Brandt or sit through the Hilary Hahn concert without half praying it would end. And the idea of taking a more adventurous trip that we would also both love is almost impossible. At one point of our trip (lots of points really, but this one stood out), I was laying in bed completely exhausted and needing to get up and shower. I thought about asking Brandt to take a picture of this that I could post. I had posted a few photos of our trip on Instagram. But only when we were up and doing something fun. I had the idea to post a picture of the cost of those outings. I chose not to because I still feel vulnerable and uncomfortable expressing these experiences. I also felt weird asking Brandt to take a picture of me passed out in bed. But I wish I had captured one of these moments. Again, I don’t want to come off whiny. I know that I should find joy in the things I am able to do, and I do! Be happy for the fact I have a wonderful husband who enjoys so many of the same things I do, and I am! But I also know that I should be allowed to express what my illness has stolen from me. To be sad over the fact that I can’t physically do everything I want to do or even need to do in some cases. To mourn the life I thought I would have. Because those are difficult things to go through, and I want to validate anyone suffering through such experiences and remind you that you are not alone and are allowed to feel.