Camping with fibromyalgia

Good morning crow

“Pain can virtually always be treated, usually effectively.” Merck Manual Home Edition

The crows visited our campsite every day at dawn and dusk.  I knew it was time to take my medication when I heard them swiftly gliding through the trees.  The rest of the time I was checking the clock often because I was in near constant pain.

I can usually tell when eight hours have passed but with all the physical work I was doing, I put myself into a state of complete pain.  Fortunately, my pain medication worked well enough so that for the most part,  I managed to enjoy myself.

Not only do I love being close to nature, I also crave the peace that the experience offers me.  I guess this is why I went camping with fibromyalgia.

Eight hours used to seem like a long time.  I didn’t think much about this time span when I started taking an opioid analgesic for pain.  I had taken Tramadol for two years until the medication stopped working and a stronger dose made me too sick.   The opioid, which is a narcotic, drastically changed my life — for the better.

In one way I felt that the Tramadol had never worked compared to the opioid. I don’t have nearly as many side effects as I did with Tramadol, such as a severely dry mouth, nausea and dizziness.  I was waking up every half hour for water and developed a few cavities in my teeth while I was on that medication.

Two and a half years have passed and I’ve managed to stay on the same dose of the opioid pain reliever, which has given me some peace of mind.  I guess I get scared of increasing the dose because I wonder where I’ll be in ten or twenty years from now if I have to keep on doing that.   My fear is somewhat relieved through understanding that tolerance is not addiction.

“When people use narcotics exclusively to control pain, it is unlikely that they become addicted or dependent on them.”  (3)

Several months ago I had to start taking breakthrough medication for fibromyalgia pain as a result of two injuries over the past year.  Most days I need at least one dose and some days two.  The extra pain I’ve been experiencing may no longer be considered breakthrough pain and instead could mean that my pain has either worsened or I’ve developed a tolerance to the medication.  “Usually, the need for a higher dose means that the disorder is worsening, not that tolerance is developing.” (2)

Either way I’m in too much pain without the breakthrough medication or the alternative, which is to increase the medication I take every eight hours, seven days a week, three hundred and sixty-five days a year.

For the past three days since returning from my camping trip, I’ve been in such a great amount of pain.   I’ve had some pretty depressive thoughts.  I do feel physically better now, which has allowed me to come here and write.

mystical mountains of North CarolinaI love camping and the place where we stayed is by far one of my favorite places to visit, but my trip turned out to be a huge challenge.  I managed to enjoy what I could but I would certainly go about it differently if I could do it over.   I’d make it easier on myself, somehow.

I loved being in the mountains.  I loved sleeping outside.

I loved the fire we had.  It was a strong fire.  A good fire.  Through two rainfalls and strong winds that fire continued to burn.a good strong fire made the camp

We stopped at an overlook on the Blue Ridge Parkway on the second day of our trip.

“You want me to take a picture of all y’all together?”  I turned to the young woman who was sitting in the back of an older model pickup truck.  She was with her two brothers, although only one was actually her blood relative.  The other one, “was just like a brother,” she told me.  She took our picture.

“Have you bought your firewood yet?” she asked.  She had a cheerful way about her.  I liked her.

“I’m on my way to get some now,” I told her.  They offered to bring us enough wood to last for four days for ten dollars.  I couldn’t believe it when they arrived with huge logs of Locust wood.  They visited for a while and the two young men got the fire started for me, while I sat with their sister down the hill from our camp.  We talked about our lives.  She told me personal things and I did the same.  We exchanged phone numbers.

“From now on — when you come up here — you’ll have all the wood you need,” she said.  Wood is expensive so I’m glad to have met them.  It’s also nice to know I might have a friend who would come by to chat the next time I camp there.

“I’m the tomboy in my family,” she said.  “I’m thinking about being a fire-fighter for the Army,” she added.

She had lifted those big logs out of the truck bed tossing them on the ground the same as her brothers did.  She was quite strong.  She also had several invisible illnesses, which we talked about.  We talked about pain medication too.

It’s just plain odd how sometimes the people we stumble upon in life mirror our own lives in such a strong way that irony fails to describe the meeting.

I wanted to tell her to take it easy on her young body, but there I was preparing for a four-day camp with me doing most of the work.  I was in pain.  I know I’m not supposed to do all that I did.  I’ve read about fibromyalgia.  I’ve been directly told by doctors and physical therapists what I should and shouldn’t do and most importantly, I’ve lived with it for over a decade.  I know what activities are likely to hurt me.  I experience pain much of the time from things that I do.  Maybe some of us just don’t know how to take it easy.

That fire — yes, let me get back to that fire! It took about six hours or more to get going but it never went out.  I couldn’t allow it.  I almost did a couple of times but each time thought better of it realizing that the fire made the camp.

Keeping the fire burning was a full-time job.  I’d wake in the night thinking of it.  Looking out from the tent I could see smoke.  I’d get up and add a piece of wood or move a big log around to keep it going.  I enjoyed this process very much even though it was hard.  By the third day I could no longer lift the logs and put them in the fire.  I had to get the younger people involved.

I couldn’t understand why they didn’t want to be involved in keeping that fire burning.  I felt like I was the only one there who knew how special it was.  It was the life of our campsite.  It was good medicine.  It also kept away the critters, both real and imagined, the thought of which scared the young folks, but this didn’t make them want to do any work to keep it going.

Their taking the fire for granted frustrated me to no end.  I finally gave a little speech about how much work I was putting into keeping it going as they all seemed resentful when I asked them to do other chores, such as cooking or washing dishes.  They got the message but some pouted.

I worked hard for several days preparing and packing for the trip.  I worked through pain and severe fatigue.  My camping companions began complaining about being tired on the first evening.  I couldn’t believe it!  They are all young and healthy.  I simply couldn’t tolerate them saying, “I’m tired.”  I admit — I did not have much empathy for them.

I told them I was the one with fibromyalgia and Chronic Fatigue Syndrome.  I told them that being tired was not a good enough reason to not do what needed to be done.  They started gathering sticks.

I knew I’d pay from having lifted logs, then poked and prodded the wood, bending over every few minutes tending that wonderful living entity of burning Locust.  I’d pay too for the many trips up the hill from my car to the camp.  I knew I’d pay, but when I did, well… my knowing didn’t make the pain easier to deal with.  I’m still paying a price as I write.

I needed the outdoors as much as I needed anything in life.  I needed to sleep outside.  I wish I was still there and I may just go back — alone.

I loved seeing the wildlife, especially many species of butterflies, one of which followed me around one day, landing on my shoulder when I stopped to talk to the Park Ranger.  That was pretty cool.

There were white-tailed deer everywhere.  I came upon one who looked at me like I had intruded on his land.  I felt that I had actually.  I walked in the other direction.  I’d never seen a deer look at me like that one did.

I loved the cool mountain weather.  I loved that I got chilly at night.  I loved the night when the wind blew so hard that I could feel it move through my tent, and me.  I loved feeling the earth next to my body.

I did not like that pain was a constant part of my camping experience.  I don’t like that I’ve been in so much pain since I got home that all I could do is lie down, cry and take the dogs out for a short walk — and I mean short.

I’ve felt like one big bruise.  The pain has been almost unbearable.  The fatigue was nearly as bad, but not quite.

I felt like I was the only person on earth when I returned home.  The pain was my own little world.  It was my entire experience of living.  Pain.

I became depressed.  I thought about how I’m tired of taking care of people.   I’m also tired of people not understanding what they cannot see.

I had several phone messages from my mother when I got home.   She was worried even though we had agreed I would call her when I got home.

My mother worries.  That’s what she does.  Once she discovers that I’m alive then we only talk about her, the lives of my siblings or gossip about people I don’t even know.

I often feel unheard and invisible, which makes me kind of sad.  I have a pretty heavy heart as I write though.  Maybe a few more nights of rest will help my attitude.  Maybe.

“Where are you?” my mother asked on one message.  Well duh!  I had told her where I was going.

“I guess you are still camping,” she said worriedly on another message, which of course, made me feel guilty for having worried her.

I tried confiding in her about the pain I was in when I returned and answered her call, but we didn’t get too far with that subject.  The next day she called again.  “What’s new and interesting with you?” she asked.  “Are you over your little camping spell?”

“Yes,” I lied.

I’ve withdrawn since my return.  I can still see in my mind the little magical place I lived in for those few days.  It’s starting to fade some.  My hair still smells like the fire and it’s been five days now.  I’ve washed it every day but I can smell the camp when I dry it.  I miss it.

I guess it’s just a feeling I get from being outside without any street lights or sounds of a city.  A place where the animals are free to roam.   And those hills, well, you gotta love those hills!

Resources:

(1) Treatment: Pain: Merck Manual Home Edition

(2) American Chronic Pain Association, (Glossary: Tolerance)

(3) http://www.webmd.com/mental-health/narcotic-abuse


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4 thoughts on “Camping with fibromyalgia

  1. Thank you so much for stopping by! :) I appreciate your comment :). I’m sorry to hear that you struggle with fibromyalgia. It inspires me to know that you are a very active person! Awesome! Keep on loving life! :) *God* bless!
    -Diana-

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    • Hi Diana,
      Your welcome. I enjoyed your post about that great state! Thanks for you kind words about my health. I try to stay active. My dogs demand at least some exercise out of me so that helps. That trip was hard but I enjoyed the outdoors! It was beautiful.
      Thanks for visiting my blog :)

      Blessings and peace to you…

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  2. I love sleeping outside too… but I can’t imagine doing all the work you did and being responsible for other people! That is awesome to me that you even did all that, I would not have even had the guts to say yes to go. I’m afraid to go out for the day most the time unless my husband goes… I know, I’m very blessed to have him to lean on. Most people don’t have that kind of support. I’m scared to death every day of something happening to him. It’s one of those major anxieties of mine that I really try not to have.

    But anyway, back to YOU. I know what you mean about just answering the “How are you” question with “fine” or the “How’s your pain” question… it feels like a burden to tell the truth. I wonder if people really want to hear the truth or like your mother just want to hear about it for a moment because that’s really all they can handle. I don’t think people can handle hearing how much pain we are in… it’s too much to bear hearing and it’s easier to just ignore that big ugly elephant in the room (all though i love elephants so they really aren’t ugly).

    The only folks I am honest with are the bloggers… and my husband (and not even him all the time), and I guess if I really think about it I am really not even honest with myself all the time.

    Withdrawn and bruised… I think a lot of us feel that way, I know I do. Lately more than ever… I gotta find the secret to working my way out of it faster…

    I’m glad you were able to get away and sleep under the stars… it sucks you had to pay with pain, but keep the memories and hopefully they will stay with you longer than the pain my friend.

    Take care.
    Tamiko

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    • Hello Tamiko!

      Thanks for commenting. I feel a little less withdrawn from having read your words. It’s a comfort when someone understands and I guess you’re right, not too many people are going to be able to handle the truth when it comes to another person’s pain.

      Usually, camping isn’t so hard. This trip was possibly the hardest on me physically, as well as mentally and emotionally, as any trip in my life, oh wait, the last time I went nearly killed me but that was four years ago! I had forgotten. Fibromyalgia and I aren’t getting along at all right now. I know it doesn’t help me but I’m angry at all this pain.

      I have a very nice camping mattress. If it is on flat ground (in the tent of course) then I sleep better than I do at home. Much better! I get hungry outside and hardly ever have an appetite at home. I relax outside instead of staring at four walls, or my computer and I don’t feel trapped the way I do inside. So, overall, honestly, I’d live outside if I could, but only if I had a pop-up camper. My dream is to get one. Then I could go anywhere –like Montana. I’d like to go there or Canada! I’d really like to go there!

      Thank you for your comment Tamiko. I needed this communication. You have helped me today. I mean that. I hope your day goes relatively well. Give your beautiful doggie a kiss and tell her it’s all the way from North Carolina.

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