Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Planning a Vacation from Rheumatoid Arthritis
Not really, but a girl can dream…
Some days I feel so good I almost forget about the battle happening inside my body. Today is not one of those days. Today I woke up feeling like yesterday’s birthday pinata, cracked and beaten. It seems my body is reminding me who is boss here, and unfortunately, it isn’t me. A perfect time for such a reminder as I plan a vacation adventure with loved ones. RA (rheumatoid arthritis) steps in and says ‘hey don’t forget about me.’ Oh don’t worry, I won’t, you’re coming along for the fun, whether I like it or not. I just hope my traveling companions are as willing to compromise with you as I have become.
Life with RA sometimes feels like an impossible algebra equation, with far too many factors to weigh and things to consider to predict the outcome. Will a busy day and a few drinks tip the scale from okay to why me? Perhaps, did I factor in the weather, hormones, that seriously crappy meal I just ate, and the conversation I can’t stop obsessing about? If not, the whole body seize might be surprising. To be honest, this one is not. I definitely helped create this bad day. Recognizing the part I play will hopefully help my vacation be full of more good days than bad.
So how did I get busted and battered this time? Well, it all starts with pushing back my infusion because I caught a cold. Not taking the blame for that bit, it is what it is, I had to shake the cold before stepping into the arena to knock out my immune system. Nobody wants pneumonia. So, I pushed my infusion back a week. No biggie. Okay, maybe a little biggie. Had I behaved myself, I might be just a little stiff and achy right now. I didn’t.
Instead of taking it extra easy, knowing my meds were overdue and I am just now getting over the cold I delayed them for, I carried on like normal, doing whatever I wanted. Big mistake, I do wish I could take it back.
Instead of being extra gentle with myself I just spent two busy, late nights with friends and loved ones. Days full of activity, shopping, and housework, nights filled with bad food choices and alcoholic beverages. As that pretty much describes my vacation plan (minus the housework) I’m realizing I may have to adjust the plan a little.
I’m going to have to behave and pace myself, or risk spending most of my vacation in a painful, grumpy state. Something I already knew and have thought a lot about, as I prepare to see some of the world with a fun and busy group of people. I’ve even spoken up about my limits during the planning stages, making it clear, I hope, that I can’t go all day and all night and still have a good time tomorrow. Today is my personal reminder, I also can’t eat and drink whatever I like and continue to have a good time.
Noted, all things in moderation, especially alcohol and cheese.
Today may be a bad day, but it is a good day to think about those vacation plans. A great day to plan times to rest, times to behave. A perfect day to look at that 10 day itinerary with my limitations solidly in mind. To plan down-times before excursions I know I won’t want to miss, to consider which days I might be best to take the sober friend role, and which nights I need to get to bed at a reasonable hour so tomorrow isn’t spent in a painful fog, always searching for the next rest stop, or worse, unable to leave the room.
It’s also a perfect day to look at the mobility aids I’m going to need to enjoy this trip, as my feet remind me what happens when I walk as far as I think I can. As much as I didn’t want to be, I’ll be the way too young to need a cane/walker lady everyone is staring at and maybe sometimes the chic in a wheelchair, because I’m not missing that ghost tour. Now if I could just figure out how to keep the weather stable and lovely for the entire trip, I just might get to do everything on that new, more reasonable trip bucket list.
What helps you have a good time when you travel? Do you plan for success or wing it and pay the price? What remedies and items do you bring along when you travel to keep RA symptoms in check? Give me your best travel tips, I’ll take all he help I can get.
days
hours minutes seconds
until
VACATION
Tenacious ME 
I am stuck to the house today, the change in weather brings pain and stiffness to every joint in my body. My wife pushes me in my transfer chair when we go anywhere, I can load my big scooter on the rack attached to the car but it cannot go everywhere. I’m getting a new electric wheelchair on Feb. 12 my old one stopped working and it wasn’t very portable anyway; I’m hoping the new one is easier to manage. I had my acupuncture yesterday, most of the time it helps with the pain, not this time I’m in a serious flair-up, it may last a week or more. You’re making a smart choice to delay your infusion, I was using Orencia until Jan. 2019. I got an ear infection that was impossible to cure, I ended up losing my hearing due to the IV. Please be sure that you are completely well before resuming the IV, I am choosing to live with the pain versus the threat of a serious infection. I have found the best remedy for pain is medical marijuana, 25 mg at night releaves pain and helps me sleep. When traveling I make certain to take it along. So here’s to your health, I will feel better soon I wish you painless days and restful nights.
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I hope that flare has passed! RA is such a pain, I understand completely. Medical marijuana is how I get through my days too, helps me avoid all the pain meds, and works much better than they do for sleeping anyway. Do you know if it is allowed for transport on planes if it is medical? I’ve never traveled with it legally, I may or may not have hidden it in my suitcase last time I flew. 😉
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Great post😀
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Thank you for the lovely feedback. I am glad you enjoyed it. 🙂
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