It was an interesting time, this year’s family vacation.
Every year we go away with 2 other families, and each family has all siblings of my generation present most years, our parents, and most of us have kids. My sister and her kids didn’t make it this year, unfortunately. All in all this year, we had 22 people there. These people are my extended family, as far as I’m concerned, and I love them to the ends of the earth.
Most years when we go away, my body has done reasonably well. I think that I often do better in heat than in cold, and that probably accounts for it. But this year, our weather was phenomenal, while I’m past years, it has been cooler, if not more hit and miss. We had a brief storm one evening, But otherwise it was hot and sunny, almost all day, every day.
Hot. Too hot.
I feel like a traitor even uttering such words. I crave hot weather and sunshine like other people crave water. I don’t do all that well in cold, and my mood and depression take a nasty beating through the grey fall, winter, and spring where I live, here in the Pacific Rainforest of Vancouver.
My only reprieve is often summer.
But summer in Vancouver is usually 25 degrees and sunny…intermittently. We still have less nice days, and cooler days. And besides, I’m still living my regular life, with shit to do.
On vacation, I sit outside in the sun. In close to 30 degree weather. Constantly. Poolside, while the kids swim. On the deck, with the (self-proclaimed) geezers. On the most uncomfortable Adirondak chairs ever, in the sand, with my besties, while the kids play in the lake. On the dock, while the guys and kids go skiing and tubing. Floating on the lake with all my peeps (10 of us) in a McGyvered raft of floaties, drinks in hand. BBQ-ing dinner on the deck in the evening.
All sun, all the time.
And this year, my body rebelled.
It started with my feet. Now this was a little scary for me, because the last two major, major, long term episodes of fibro have begun with my feet. Swelling to the point of it being difficult or impossibly painful to walk. Weird pin prick rash of broken capillaries on my feet. And the feeling of them swelling from the outside in, with horrible pressure on all the joints inside, paired with a lovely arthritic-type pain.
Guess what my feet did this past week? Yeah, a not-quite-as-hideous version of the same. I spent two days out of six having great difficulty walking.
Then I added some super-cool back pain to the mix. It was an awesome band of pain that wrapped from my T 8-9-10 region, all the way around the front to my diaphragm, and made me wickedly nauseous.
And then, I got a weird, raised rash covering my entire chest. I guess it must have been a heat rash, although I’ve never seen one that looked like this before. (It looked more like the rash more typically associated with Porphyria…which has gotten me doing some research, since an awful lot of my symptoms seems to be listed there too…) And I haven’t gotten heat rash since I was a kid. But a rash that was a more common-looking heat rash did progress down the length of my arms and legs. So…good times.
The upside? I only got one migraine, and it was after eating a tiny, mini Blizzard at Dairy Queen. But I am already relatively sure that dairy fucks me when it comes to migraines, so it wasn’t entirely shocking. I just wasn’t sure that the “ice cream” at DQ actually contained any dairy. I guess it does. Now you know. In any case, I had the meds all ready to rock and roll, and they were put to good use…and I averted disaster.
So: six days, two days lost to feet, one day lost to back pain, one day just feeling generally shitty, three covered in a horribly itchy (and pretty) rash, and one disaster-averted migraine.
I still got to watch my kids swim and tube and ski and play with each other in the sand. I still got to spend time with the people I love most in the world. I still got to have a vacation with my kids and my family.
But it hit home for me in a whole new way that my body dictates my life now.
Sometimes I get a brief respite from pain and uselessness when I’m doing something that I really enjoy. Yeah, it sounds like a cop out: oh, if you’re having fun, you’re ok, but if you’re not having fun, you just can’t function? How convenient. I thought that for years, and so I wouldn’t let myself go and do fun things, for fear of what people would think and how they would judge me. Let’s face it, I have to ignore an awful lot of judgement already, and I didn’t really want to be adding to it needlessly. But it makes for pretty shitty quality of living when you won’t let yourself have any fun because people might think badly of you for it.
Then I took a 3 month Chronic Pain Management course at St. Paul’s Hospital last fall. It’s a highly respected pain management department. And one of the most useful things I learned is that there’s scientific evidence to back up the fun=pain reduction business.
They taught me that the best thing I can do for myself is to have fun. Literally. It will make me feel better, if only during the fun activity. Something about endorphins and neural pathways…and some other scientific shit I don’t remember. Because I have fibro. Which means my memory sucks ass. And so I mostly don’t remember my children’s names.
So yep, I have to pace myself still, and I can’t go overboard or I pay for it. Yep, I still have to watch what I do physically, because there are limits. But I CAN do more when I’m having fun than when I’m not. Scientifically proven. Not scapegoat logic. And going out and spending time with friends, laughing and enjoying each other? Best medicine. And a blessing to have learned, so that I can finally give myself permission to go out and enjoy myself, rather than holing up at home, afraid that if anyone sees me having fun, they will doubt that I’m sick. (Which they still do. Now I just don’t care.)
So I guess I kind of expected to be better than usual on vacation – physically – because it’s the time and people I enjoy most, and because that’s what has happened before.
But I think this year was just too hot. My body rebelled. The fun and laughter didn’t overshadow the pain and drown it out. And it really hit home that I have no control over how this fucking illness manifests and when it rears its ugly head. It’s so completely unpredictable.
There are things I can do that help. Usually. There are things I can do that go so far in controlling it. Usually. I can medicate and rest and pace to keep it manageable. Usually. But ultimately, it can fuck me whenever it wants to, and really, I’m just it’s bitch.
I also got to sit back and be an observer of other people’s perceptions on vacation this year. For once, it didn’t really bother me. Maybe I’m past that. Maybe I’m not. And maybe it was a temporary moment of insanity.
In the past people have said things to me that have cut me to the quick. They think they’re being well-meaning. But when people – usually the ones closest – criticize or make light of the illness I struggle with, or outright disbelieve it…it hurts like hell. <em>And it causes me to DOUBT MYSELF</em>.
“You don’t look like you’re sick.”
“You should really see a shrink.”
“Every time I see you, you seem fine.”
“You just need to get a job.”
“Ah, I see.” *tone of disbelief, and optional eye roll*
Every single time, it makes me question the validity of my own pain. I have a host of specialists (6, I think, at last count) each with maybe 7-10 years of medical training, who assert that I have this condition, and that at this time, I cannot work because of it. I agree. And yet, the people closest to me, who have zero to, oh let’s see…yup, zero years of medical training, yet somehow think they know better or that I’m pulling the wool over my medical team’s eyes, can make me question whether it’s valid or whether I’m just being fucking lazy. And they can do it in a heartbeat.
I was faced with some of that on this vacation. I think it was meant in a joking around (which this group does a hell of a lot of) way, not a pointed way. But people never realize the impact it can have.
“I’m going to take a picture of you doing <insert fun activity> and send it to your Long Term Disability administrator / work. Hahaha.”
This time I was able to let it roll. Even though the comment got a good laugh at my expense from a bunch of people, I was able to let it roll. I even laughed too. I knew in this case it really was said for the laugh, and not with any malice or judgement. (However some others in that crowd may already carry their own judgements about it, which made it a bit uncomfortable for me.) It probably helped that I got 100% backed up by my dearest friend, who immediately said, without making a big deal or anything, “It comes and goes.” It was the perfect support. No scene. No big deal. I knew absolutely though that she had my back, and she made sure that it got thrown in the mix that what I deal with is real. (We may have had a few conversations about this, so she does know how hurtful the comments can be for me.)
So it was an interesting process to observe. And <em>not</em> end up doubting myself. Turns out a little support in a crowd goes an awfully long way. It was a good thing to see, and a great thing to feel. (Thanks, Miss M. I ❤ you forever.)
In the future, I think I will make it a practice to always travel with an acupuncturist / energy worker. When my body dialed it up a notch or ten, my other dear, dear friend went to work on me and gave me several energy treatments and several acupuncture treatments. I fully believe that’s why my feet were manageable in two days rather than (sometimes it has been as long as) two months. My back pain: one day. You made a huge difference in my physical participation on this trip, Miss C., and I ❤ you for it. Plus, I just love ya.
All in all, vacations are a great thing. They feed the soul. They replenish the mind. And in my case, they restore a little faith.</insert>