One of the fun--and by fun I mean annoying--aspects of having a chronic illness is planning time for recovery. I don't mean recovery as in POOF! you're cured. I mean planning ahead so you have time to recover after some kind of physical activity whether it be a shopping trip, a night out with friends, or a long distance drive in order to live a teenage dream. It's hard to explain to folks who aren't familiar with chronic illness, but it's something those with chronic conditions must accept and try to adapt to. Think of going out and drinking way too much alcohol all night long. Then, you need the next day to rest and apologize profusely to your liver until you are fit to do something other than groan and puke pathetically. You feel lousy. You need time to take care of yourself. You need to eat right to get your body systems online. You need to rest and spend some quality time binging on Netflix. That's taking some recovery time. For those with autoimmune issues like we have, we don't need the alcohol as a catalyst; we just need to consider how much we can give before we need to cocoon ourselves away from the world.
This is what happens if you don't plan for recovery time.
Earlier this month, my husband and I had the great fortune to witness The Cure in concert in Denver. They were fantastic btw. Way better than I anticipated and with four encores, I was a happy woman. We've driven down to CO before, and I had planned a day of recovery and relaxation once we got to CO and one day for when we got back. I was not prepared for either the guilt of not socializing with friends along the way nor was I prepared for the idea that we might need
more recovery time than the last time we drove down. Things I failed to consider: a) my husband has been off his Humira for more than a month b) I am not fully healed and on pre-op lupus-Sjogren's-fibromyalgia status. Seriously, I didn't think he'd be off his med for several weeks before the trip, and I really thought I'd be doing a lot better with the whole post-surgery healing. The last time we made a journey such as this, one day after arrival and one day when we got back was sufficient. Not so this time. My past experience and best laid plans got totally fucked. It took a lot longer than one day to recover from that trip. In fact. a week later I still wasn't feeling great and wound up getting a blister pack of steroids from my rheumatologist at our 9 month check up. Goody. I love steroids.
How I feel on steroids. That's why they call it 'roid rage, kiddies.
While we were down in CO, my husband posted something on Facebook about our impending concert. Well, we have a friend there who texted me about being 15 minutes away from her house. I felt so guilty about not calling her before she saw his post, but I also knew that with as slowly as we were moving and the nap that I desperately wanted to take before the concert, making time to socialize was not realistic. Thankfully, she's a completely compassionate individual who chose not to read me the riot act. After all, we are getting some quality time together in July. Way better time to socialize and get caught up than the vaguely rutabaga-esque cognitive skills I was displaying just then. I had the good sense to buy plane tickets for that July trip. Unfortunately, these are the choices you must make when you travel and have a chronic illness that is in a tenuous state of flare versus functional. You can't always socialize when you travel. Sometimes you just gotta make the tough call and take care of yourself. And your spouse.
Otherwise you feel like this with the added pressure to hide it for the sake of other people. I'd rather not, thanks.
Speaking of guilt, we have a lot of family between here and Denver as well as my aunt-godmother who lives in Denver. I did consider trying to figure some time to see her on the trip, but that wasn't really a good plan either. Drive down, concert, drive back and then go to school and finish the school year felt fairly crowded and possibly overwhelming to accomplish. I still feel guilty about not seeing her(former Catholic here), but I am so glad I listened to my gut on this one. Planning for recovery means keeping an open agenda without a bunch of appointments just in case you feel lousy, which we kinda did. 12 hours in a Nissan pick-up that has bucket seats is not riding in comfort, and our bodies were achy and our spirits cranky. Now I know many in my family who choose otherwise--they'd push and schedule their trips around however many friends/family they could possibly knock off their hit list of commitments. I am not that way, and I don't apologize for it. Feel guilty yes, but apologize for attending to our physical and mental needs, no. When we started planning this trip, my subtle mother reminded me that we did have family we could stay with. I knew this. However, I also knew that I would need time to rest and big gatherings with a lot of people--family or not--did not appeal at all. Did I mention my aunt is a nun? I didn't want to stay at a convent where we'd have to find parking at the venue, drive into downtown Denver after the concert, and then possibly wake someone up to let us in once we got back to where we were going. The hotel we stayed at was a five minute walk from the venue. Way simpler.
We walked across the street, into the hotel, and BOOM! we were in bed. It was magical.
In the chronic illness world, it's called pacing. Pace yourself and honor your limitations. One article I read suggested you make your plan with all you want to do. Then cut out 50% of that. You can always add more in if you're up for it, but better to plan for the worst I suppose. Geez. That's utterly depressing isn't it? Yet, it's reality. Guilt included.
No need to make me feel worse. I will punish myself with guilt better than this guy.
I've learned that if we ever decide to take a trip like this again we either need more time for recovery, or we need to fly. It's that simple. Until we get a comfier car anyway. Perhaps a different car would make it better, but you never know. Flying is a fairly safe bet. We could conceivably be social and make commitments on that score if we didn't have highway fatigue. Chronic illness kinda takes the mystique out of the great American road trip myth. Now if we could just afford plane tickets when we decide to take in a belly dance festival in Seattle next month. Maybe Robin Hood will ride in on a unicorn and shower us with cash.
What? It could happen.
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