Occupy CFS

Still waiting for exercise test results.

Still waiting for recovery from exercise tests.

Still waiting for the brain power to research and write some in depth blog posts I’ve been planning.

But life doesn’t give us many breaks, so cue complaint!

At 7am Sunday morning, we discovered that our hot water heater was leaking. A lot. Apparently, it sprung a leak overnight and proceeded to discharge gallons of hot water onto the basement floor. I won’t even go into the Basement Saga we have endured for the last 18 months or so, but suffice to say that this was not the first time my husband has cleaned up water from the basement floor. And that’s how he proceeded to spend his Sunday: cleaning up the spill, emptying the water heater out, discarding waterlogged stuff. We couldn’t get a new water heater installed until mid-day Monday, so we went about 36 hours without hot water.

If you have CFS, you know that stress is very very bad. I managed enough detachment to observe the cascade effect of this stress in my body. The adrenalin rush after we found the leak hit my gut first, with spasms and pain, and triggered orthostatic intolerance symptoms of dizziness and weakness. Nausea and fatigue came next, and then anxiety about how we would find a way to deal with this mess. Deep breathing and emotional support helped calm the anxiety, but fatigue and post-exertional malaise swept in. I was flat on my back and out of commission.

I had a criminal law professor who liked to say, “If you believe that, you’ll never own your own home.” Sometimes I wonder if people with CFS should not try to own their homes. It’s nice to have control over your space, until something breaks and you have to be in control of that too. This kind of day-to-day stress is just unmanageable for me when I am in a crash. I am not capable of mopping the basement floor or carrying wet trash up the stairs. When I’m sick like I am in the wake of the exercise tests, I’m not capable of dealing with a contractor to get a new water heater installed. I’m really not in any kind of shape to make a cup of tea, let alone deal with the perfectly normal problem of a busted water heater.

End complaint. Cue gratitude.

I am so fortunate to have a home, when many CFS patients do not. We can afford to have the water heater replaced. I have a husband who is able to clean up the mess and work from home to deal with the contractor. My mom was staying with us to help with cooking, errands, etc. and she found the leak Sunday morning, hours before my husband would have himself. She helped him with the clean up. Nothing valuable was damaged. And compared to the water situation in most of the world, 36 hours without hot water is really not a big deal.

This episode was an annoyance, in the grand scheme of things, and we dealt with it. No lasting harm was done. What is most upsetting to me about the whole thing is that I could not have coped with it alone. Even on a good day, I am too disabled to manage this kind of homeowner responsibility by myself. This incident throws a spotlight on the fact that I could not live by myself, not without a great deal of assistance. It’s not fair, and both pisses me off and makes me sad. And it fills me with compassion for those of you with CFS who DO live alone, and find ways to cope.

Exercise testing for CFS is like professional boxing: you know you’ll get the crap beaten out of you, but you volunteer for it anyway. The difference is that in boxing, you get paid. In CFS exercise testing, you just hope to get some useful data. I don’t have the results of my testing yet, but I thought it might be helpful to at least share what the experience was like.

The rationale for exercise testing in CFS comes primarily from the research of the Pacific Fatigue Lab at the University of the Pacific. Their research has shown that people with CFS have a unique response to a two-day exercise challenge compared to healthy sedentary controls or people with other illnesses. In the second test, people with CFS demonstrate significant impairment of their metabolic function. In other words, the testing captures the effects of post-exertional malaise. If you want to read more about this, you can check out the series of articles I wrote on post-exertional malaise in 2010.

The Pacific Fatigue Lab testing calls for two cardiopulmonary exercise stress tests (CPET), spaced 24 hours apart (referred to as the Stevens Protocol). I went to Ithaca College to have my testing done by researcher Dr. Betsy Keller, who has provided the CPETs for CFS research by Dr. Maureen Hanson and Dr. David Bell. I was instructed to rest for several days in advance, and to eat frequent carb-rich snacks of fruits, whole grains, etc.

The test began with blood pressure and EKG measurements taken while I was lying down. Then we moved to the stationary bike. I was fitted with a nose clip and scuba-like mask so that my oxygen and carbon dioxide could be measured and analyzed. The EKG leads were hooked up to another machine so that my heart could be monitored throughout the test. Then I sat on the bike without pedaling for three minutes, so that resting data could be collected. My blood pressure was measured every two minutes throughout the test. I got the order to start pedaling, and every two minutes a little more resistance was added to the bike so I had to work harder as the test continued.

And it was hard. Very hard. The techs were constantly shouting encouragement, telling me how much time was left at each resistance level, goading me to push to the next level. Every two minutes, someone would ask me to rate my level of perceived exertion and that was recorded as well. There was so much going on, all I could do was focus on pedaling the bike. The goal of the test is to pedal until you feel you cannot go any further. Not I-would-like-to-stop-now, but I-will-fall-off-the-bike-if-I-have-to-keep-going.

Once I hit that point, they dropped the resistance from the bike and asked me to pedal a little more to start cooling down. I was just on autopilot at that point, barely paying attention to what was going on. They kept taking my blood pressure to be sure that it started dropping back down to normal. Finally, they helped me off the bike and into a chair to recover. The best part was then being helped into the next room to lie down!

On the next day, we did the whole thing over again. It was definitely more difficult the second day, although I don’t have any data yet to say whether they saw the dysfunction they expected. Once I cooled down from the second test, I was helped to the car and allowed to go home.

I think I will do a separate post about recovering from this test. Suffice to say, it sucks. I just hope the test data will be helpful.

Being housebound changes a person. These four walls have become the boundaries of my whole world. I rely on books and the internet to remind me that there is more to life than this. My imagination can escape, even if my body cannot. But over time, it has become easier to forget about what lies outside. Instead of seeing these walls as part of what is, it has started to feel like the walls are what should be. That I am trapped, and always will be, and that this is all there is. I will sit still while the world goes on. I am not a part of it, anymore.

But who knows what she spoke to the darkness, alone, in the bitter watches of the night, when all her life seemed shrinking, and the walls of her bower closing in about her, a hutch to trammel some wild thing in? – Return of the King

But our trip to New Orleans took me outside this cage for a little while. I got out from under the burden of these walls.  And I realized – I remembered – that LIFE surrounds me. There is more out there than the same trees and bushes I see from my windows. Different sky, different people, different sounds. New music, new food.

It was like taking off sunglasses on a cloudless day, everything seemed so bright and fresh. Have you ever had the wind knocked out of you? This was like taking that first deep breath after gasping for air. It was emotionally and spiritually invigorating, despite being physically exhausting.

And I remembered something. My life is about more than enduring this confinement and searching for a way out. I care about more than the contents of my home, and the tired, dusty thoughts in my mind. My life is not an endless monotonous slog towards another day of more of the same. I can touch the world, not just read about it. I can feel it smell it taste it see it hear it. I am PART of it, just like anyone else. There is some life in me yet.

My husband and I were fortunate enough to take a vacation to New Orleans last month, and I am still recovering. But I did want to share what I learned (or re-learned) on this trip about traveling with CFS. I wish there was a magic pill that would allow us to take vacations from CFS, but in the meantime, here is some of what has helped me while traveling.

1. GO! First of all, go on vacation if it is at all feasible for you. My husband and I manage vacations once every five years or so. We might travel for a family gathering or go a short distance in summer, but to actually get on a plane and go somewhere is a really big deal. The physical and financial costs are very high, but the emotional benefits are also high. I think it is critical for those of us who are disabled, especially housebound people like me, to get a change of scenery. There’s probably research showing how important it is cognitively and emotionally for housebound people to see and experience new things, but even if the research does not exist I believe this to be true. There is no substitute for getting a break from the daily grind, so if it is possible for you to get away then I highly recommend you do.
2. Planning. I’ve always been a planner and list-maker. But traveling with CFS requires extreme planning. The biggest challenge I have on vacation is wanting to do more than I am physically able. My list of “essential” things to do in New Orleans would probably be a lot for even a healthy person to do. My husband finally asked me, “What are the things that if you do not do, you will feel the trip was a failure?” That changed my perspective towards the list, and helped me narrow it down. It was still too ambitious, but it did help me identify what my highest priorities were so that we could focus our energy.
3. Hotel. Stay in the nicest place you can afford. I spend most vacation time in the hotel room, so we are willing to pay more than we would if I was healthy. A nice view, comfortable bed, and friendly staff take a little bit of the sting out of being stuck in a hotel room. I always hit a point on vacation where I feel like I could stay in my bedroom for free at home, so it’s a waste of money to travel. But see item #1 on this list. A different four walls and view out the window is a good thing. We have also found that staying in a hotel with room service is important, if we can swing it. On this trip, my husband spent several days in meetings. No room service would have meant I didn’t eat when I was unable to leave the hotel room. A hotel room with a kitchen would be an alternative. There was a nice market near our hotel, so we could stock up on fruit, cheese, and so on to help offset the exorbitant costs of room service.
4. Devices. Even if you do not use a wheelchair or other assistive device on a day-to-day basis, consider using one on vacation. On some previous trips, we have rented a scooter for me and that was great. I have my own manual wheelchair now, so we travel with that. There is no substitute. Using a scooter or wheelchair enables me to be out of the hotel room much longer, and enjoy walking-intensive activities like museums. I’ve never used a rollator, but that might be a good thing to try for some people. There are other advantages to using a wheelchair, as well. For example, you go through a separate (much shorter) line at airport security. Destinations like Disneyworld are extremely wheelchair-friendly, with separate (much shorter) lines and very well-trained staff. New Orleans was not as great in some places, like the French Quarter where the sidewalks are old and bumpy. But for the National World War II Museum, it was the only way I could go.
5. Airports. I hate to fly. I hate airports, the people, the noise, the sensory overload, sitting upright for long periods of time, struggling with baggage, etc. I hate it. So we do what we can to minimize the negatives. We fly direct if at all possible. We bring my own wheelchair (so we don’t have to rely on airline personnel to show up at the right time with a wheelchair) and we check it at the door of the airplane. We ask for help at security, the gate, baggage claim, and anywhere else we need it. That help may not always be forthcoming, but we always ask (and are sometimes pleasantly surprised). We make sure to bring adequate fluids and snacks on the plane. And my most indispensable piece of airplane endurance equipment is noise cancelling headphones. I don’t even always hook them up to my iPod. It makes a big difference in cutting the noise of the engines and the chatter of other passengers (that I can never seem to block out).
6. Schedule. Build rest days into your schedule, and then build in some more. I never plan enough time for rest. This vacation was the longest we have ever taken – 10 days, and I had four days when I did not leave our hotel room at all. I am better about planning rest times during any given day, since I know that I can’t be out for more than a couple hours. I also tried to plan ahead. There were a many restaurants I wanted to try, and on two days I did nothing all day to be sure that I could go out to dinner that night. Flexibility is also key. We adjusted our plans based on lots of things, including how I was feeling, the impressive New Orleans thunderstorms, and how crowded we thought a location might be. For example, we wanted to see the parade of the Mardi Gras Indians, but had to let that go when we found there was no safe, wheelchair-friendly way to do it. Museums tend to be less crowded during the week. And we learned about weekend crowds in the French Quarter the hard way! I much prefer predictable, planned schedules, but we went into this trip knowing we would have to adjust on the fly and it helped.
7. Nutrition. Ensuring I have adequate nutrition and hydration seems like such a basic skill, but it has taken me a long time to master.  We had the convenience of a nearby store and the hotel market (very handy for when I was by myself and really needed to boost my electrolytes). Carry food and fluids with you everywhere. Pack your vitamins and supplements. I was surprised that I needed better hydration than normal while traveling, which I guess is true for everyone. It’s much better to carry those supplies along with you and not need them, than deal with the reverse.
8. Alone. Expect to spend some time alone. Your partner, family or friends will undoubtedly want to do things you cannot. In our case, my husband had business-related meetings to attend. If you plan ahead, it is a little easier to tell your family to stay at the pool while you rest, or send your partner off on a hike without you. In my case, this meant knitting. I had several audiobooks on my iPod, and I packed lots of yarn. For the first time ever, I knit all the yarn I brought along (can’t show you, as they are presents). I cut my security blanket and left the computer at home, compensating with the iPod and e-reader. It meant less weight to carry, and I had more than enough entertainment to fill the many hours in the hotel room.
9. Buddy System. I am housebound and live in the suburbs. I am not able to drive, and this means that anywhere and everywhere I go at home is with someone. To be in a city, with cabs readily available, and neighborhoods to explore, I felt like I had reached an oasis after a week-long desert trek. And if I had done as much as I wanted, I would be as sick as the dehydrated person who over-drinks at the oasis. I’ve developed restraint out of self-preservation, but I still need someone to hold me back. My husband is frequently better attuned to my limits than I am, simply because I want to keep going. Relying on your companion(s) to help you gauge when it is time to rest or stop altogether can really help. I went out one day on my own and definitely overdid it. Maybe it’s just me, but having a friend be my reality check is important to avoiding early burnout.
10. Disappointed. Despite all the planning and flexibility, I did not do all the “essentials” on my list. The reality of CFS is that we cannot do even a fraction of what we want to do. I’ve been sick for more than 17 years, and my desires have still not completely calibrated to my capacity. I had a lovely vacation, but I can’t help thinking that a few more days might have made it possible for me to manage those last few things on my wish list. Now that I am home, I am trying to navigate the waters of disappointment. But the root of it is that CFS insisted on accompanying me on vacation, and nothing can change that. Considering my degree of illness, and what my normal life is like, this vacation was a huge success. Realistic expectations help offset the inevitable disappointment of traveling with CFS.