Camping and fibromyalgia (part 2): Afterthoughts

Going to sleep with a view of pine trees and innumerable stars, waking to bird calls and dew: these are the things that make camping worthwhile. Some parts of my strategy for camping with fibromyalgia worked very well; others need improvement. Here’s a run-down of the results.

• Getting there: the drive to the campground was okay. We stretched several times and stopped for lunch. The drive back was harder. The total trip was 355 miles, as we spent a fair bit of time driving around the area checking out different beaches and looking for restaurants. We were in a hurry on the way back, and didn’t stop as often as we probably should have. This was beginning to trigger a pain flare, but I managed to nip it in the bud.
• Having a co-camper ally to help manage the gear worked like a charm. (Thanks, camping buddy!) We’d both practiced setting the tent up recently, so that went off without a hitch.
• Sleeping arrangements: my camping mat and other gear kept me warm, dry, and comfy. I do have some ideas for making sleep even better. I may want to try using an air mattress in the future, as a friend tipped me off that it’s even more comfortable than a thick camping mat. It may be more bulky to move around, though. It’s something to try. Another consideration is that I did two trial runs in the backyard this week, for a total of three nights sleeping on a mat on the ground. The extra runs made me a little extra sore. The trial runs won’t be necessary next time, fortunately.
• Morning stiffness – I did some stretching, and that seemed to take care of most of it.
• Other issues: We should have done more research on where to eat. We planned to eat out and not worry about cooking at the campsite. A number of restaurants were closed as it’s the off-season at the beach. It seemed like the only restaurants we could find had fried food or $30-a-plate dinners. We also looked for restaurants when we were already hungry – a sure way to get cranky and desperate.

Overall, it was a good trip. I did have to take steps to prevent a pain flare when we got back: medication, hot shower, lots of stretching. In the future, I may want to try using an air mattress, planning restaurants in advance, and taking my own advice about spacing out time in the car.

Camping and fibromyalgia

I grew up with a camping family. It’s a cheap way to go on vacation with three kids and two adults, and it’s fun as well. Sure, there were some…incidents…involving my brother setting up his hammock underneath a raccoon’s mating tree, or when a couple of squirrels fought over a cookie all night long. They make good stories now, and I guess maybe they built character?

I think a good analogy for hotels versus tents that it’s sort of like the difference between driving and walking. If you drive, you’re better protected from the elements, it’s usually pretty comfy, and you tend to get places more quickly. If you walk, you get to notice more. Since it takes time to walk by that house on the corner, there’s time to notice the chihuahua in the window hopping up and down and barking like mad. You can notice when the tulips start coming up, and whether someone new has moved in to a house. It’s more relaxed than driving.

Camping is similar. There’s time to sit out talking by the campfire (it smells so good!). I like listening to the birds in the morning, or watching the sun come up. And the stars are amazing!

When I got diagnosed with fibromyalgia, I thought my camping days were over. Sleep on the ground? You’ve got to be kidding me. Set up a tent, carry gear, ride in a car for hours to get somewhere? Impossible.

I think it probably was pretty impossible when I was first diagnosed. I had trouble going shopping in one store, and I was pretty much limited to half hour car trips. I also stopped exercising because I was afraid of pain, which made it even harder to get around. At the moment, I’m definitely not “cured.” I still have aches and pains, and when I have a flare-up it is, well, agonizing. I really want to make camping work, though. I enjoy it, and it’s a cheap way for someone living on disability income to go on vacation.

I think the key to making camping is going to be having the right gear and being prepared. (Although really that’s the key to any camping experience. You do not want to be cold and wet.)

Here’s my camping plan, complete with accommodations and ways to work around common fibromyalgia issues:

1. Getting there: long car rides are tricky for my back and my body. My doctor has recommended that I take frequent breaks. I think she said I should take 15 minute breaks ever hour, although that adds a lot of time to a trip. Whatever the case, I try to get out of the car and stretch frequently. Solution: take frequent breaks and stretch.
2. Making sure I can manage the gear (e.g. setting up the tent, loading the car, etc.): This is where I probably need an ally to help me. I can do some of this, but no matter what your ability level, setting up a tent alone is tricky. I want to go camping with friends anyway, so this is pretty much taken care of. Solution: recruit a friend.
3. Getting a good night’s sleep: Sleep is such an issue for people with fibromyalgia anyway. I think some people even use it as part of the diagnostic criteria. I managed to get a foam camping mat that is self-inflating and 3.5 inches thick. It’s not cheap, but I think this is one of the most important pieces of equipment. I do not want to feel every bump on the ground when I’m trying to sleep. I would also recommend checking night-time temperatures for the area you’re going to be camping. In my region, it usually drops about 20 degrees overnight. So if it’s a comfortable 65 degrees outside during the daytime, you’re going to be sleeping in 45 degree weather. I have a down sleeping bag from when I was a kid. I think any kind of thick blanket or comforter can work, unless you’re going in winter or something. Camping can also be noisy. I’m used to forest noises (birds, the occasional rustling), and I find them quite soothing. If the dawn bird chorus bothers you, you might want to get some ear plugs. If there are any sleep issues that you usually have at home, think about how you usually deal with them and try to mimic it when camping. Solution: Plan ahead, invest in a good sleeping mat, stay warm, and be prepared for things like noise and temperature.
4. Morning stiffness: This is usually an issue for people with fibromyalgia, even when sleeping in a bed. Make sure you know some good stretches, and bring anything you normally use to deal with morning stiffness. I find menthol rubs such as icy-hot or Tiger Balm helpful, and Thermacare wraps are a-MAZ-ing. If cold is your thing, try bringing a small ice chest with some ice packs in it. It’s also good to bring any pain medication you have. Solution: stretch and use heat or ice therapy, as well as anything that usually helps.
5. Other issues: All campers have to be prepared for certain things. Does your campground have showers with hot water? If not, investigate how other people keep clean. Do you have gear for inclement weather? Do you want to prepare food or eat out? Don’t forget to bring things like sunscreen and mosquito repellent. Check out camping guides and books before you go. Also, remember to bring anything that’s part of your everyday treatment routine – plus things for flare-ups – with you. Don’t forget your medication! Solution: Read up before you go, prepare for the unexpected, and bring necessities such as your medication with you.
6. Don’t forget to have fun! Otherwise, what’s the point?

I tried a test run of my set-up in the backyard last night. It worked well, although I did have some morning stiffness. I’ve been stretching, and it seems to be going okay.

I’m going for a “real” camping trip Wednesday night – beach, here I come! So this is also a roundabout way of saying that there will be no Wednesday update. However, I’ll try to write up some after-thoughts about camping on Friday. Maybe I’ll post some pictures too, who knows.

Ability’s Invisible Knapsack

This is actually something I wrote a year-and-a-half ago, but I think it’s still relevant today. I would also add the caveat that thinking only in terms of what one cannot do is not a healthy endeavor. It can be empowering to think about changes in privilege and perspective resulting from major life events. It can be even more empowering to see how many of those glass ceilings you can bust wide open.

***

A few years ago, I encountered Peggy McIntosh’s piece, “White Privilege:  Unpacking the Invisible Knapsack.”  In it, she talks about race, racism, and privilege in a way that was unfamiliar and eye-opening for me.  She states that, “As a white person, I realized I had been taught about racism as something that puts others at a disadvantage, but had been taught not to see one of its corollary aspects, white privilege, which puts me at an advantage….White privilege is like an invisible weightless knapsack of special provisions, maps, passports, codebooks, visas, clothes, tools , and blank checks.”  She created a list of fifty privileges she had as a white person that people of color do not.  Her work inspired me to look at racism and my own privilege in new ways, and ask new and difficult questions of myself.  How do I contribute to racism?  How can I share or give up some of my privileges?  Am I unintentionally oppressing others in my everyday encounters?  I haven’t come up with concrete solutions on an institutional scale, but I hope that I have been able to change some of my everyday actions in a way that challenges white privilege.  I hope that, in the process, I’ve become a better ally, not just to people with a different skin color, but to people who are different from me in general.

I also have an invisible difference.  [Four] years ago, I was diagnosed with Fibromyalgia.  Fibromyalgia is a Rheumatoid “syndrome,” or collection of symptoms.  Doctors don’t know what causes it, and diagnosing it can be difficult.  Its main symptoms are pain and fatigue.  Until the 1980’s, medical professionals did not even have a classification for Fibromyalgia.  Fibromyalgia primarily affects women; women with Fibromyalgia were discounted as being “hysterical” or prone to exaggeration.  Being diagnosed with Fibromyalgia drastically changed my life and led to a loss of privilege. I began to think of all the assumptions I’d held about people in wheelchairs, or the health classes I had dozed through in high school when they talked about chronic illnesses.

Disability status is something that can change, as race cannot.  It is also more easy to ignore, as many chronic illnesses are invisible.  In most cases, you cannot look at someone and see that he/she/ze has HIV, or Fibromyalgia, or Heart Disease.  At least in my case, when I was able-bodied I went through the world completely unaware of the ability privileges I held.  I have found that it’s often difficult to communicate with people who have never experienced disability before, either through their own ability level or a close relationship with a friend or loved one with a disability.  I find myself playing “educator” a lot, a role which can get tiring rather quickly, especially when you are already dealing with fatigue.

At the suggestion of a friend, I decided to write something modeled after Peggy McIntosh’s work.  In the following list, I write about “everyday” privileges I used to have as an able-bodied person.  I use the present tense, to make it more relevant and accessible for people who currently have able-bodied privilege.  Although I have co-morbid illnesses along with Fibromyalgia, I decided to focus on that illness in particular.  In addition, it should be noted that my experiences are not the same as every other “disabled” person, or even every other person with Fibromyalgia.  However, I do believe they share common elements, even if the specifics are not the same.  My hope is that people will find new insight into their own assumptions about their invisible knapsack of ability privilege, just as Peggy McIntosh helped me realize new things about white privilege.

1. I can wear whatever clothes I want, without worrying that wearing them or putting them on might hurt my body in some way.
2. I do not have to remember to take medication, or suffer the consequences of forgetting.
3. I do not have to worry about the side effects of my medication.
4. I have never had four doctor’s appointments in one week.
5. I have “sick days” instead of sick months.
6. I do not have to “out” myself as a disabled person, or worry that people will treat me differently because I am disabled.
7. I am able to drive myself places when I want, without worrying that I’ll get too tired to drive myself back.
8. I can go to school full time, if I wanted to.
9. I can have a glass of wine or a bottle of beer if I wanted.
10. No one has ever ended a budding friendship because they were afraid of my illnesses.