New Spoonie Game = A Whole New Rule Book

Since my diagnosis of psoriatic arthritis three months ago, I’m adjusting to budgeting my energy as a spoonie.  One of the things that I’m doing is negotiating heavily with the over-achiever type-A part of myself to make sure that I don’t overdo things. Recently, I realized that I need to put that aspect of my personality in charge of self-care.

It’s time to be a perfectionist in terms of taking awesome care of myself.

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Self-Care Epiphany

My new employer wants me to plan to take a long weekend to be able to process and digest the information overload that I’m going through this month. (I know, right?) And my husband has a few weeks where he can actually take time off. We need a getaway. We need some exploration and us-time.   One of our favorite things to do is to pick a random city and spend time there, meandering.

At first, I was thinking of this trip the old way we’d travel – maybe go on the cheap and camp? Maybe just take public transportation? Fly economy and travel light with just carry-ons.  Then, after a particularly telling dream a few nights ago, I realized this was 100% not taking care of my new self. It wasn’t acknowledging or planning for my new reality.  I was setting myself up to be exhausted, in pain, and miserable.

I also realized that I need to learn these skills, because I’m likely to be traveling across the country about once a month for the foreseeable future. Between school and my new job, I’ve got to become a pro at flying with a limited budget of spoons, and an invisible disability.  Traveling on a short flight with my husband is great practice, because if I need help, he’ll be there with me. Later this year, I’ll be flying alone, so I need to know the ropes.

Spoonie-Style Travel Plans

I know that I need to swallow my pride and ask for help as much as possible. My biggest challenge right now is that I don’t have identification that allows me to show that I’m sick – and my illness is invisible.   If I can make shortcuts in my trip without having to deal with that aspect of things, I think things will go more smoothly.  A lot of my plans are basically toeing the line between those two plans.

  1. TSA Precheck – The first thing I realized was that I need to skip the TSA lines as often as possible.  Brett and I both signed up for the TSA precheck. This means that by submitting to an FBI background check and paying a fee, I can have a 5 minute wait instead of an hour wait.
  2. Yes, I know that there are disabled lines, and that I’m technically able to use them. According to the social security rules, I’m legally disabled.  The thing is, PsA is an invisible disease, and I don’t have a disabled ID card yet.  It’s on my to do list, though. I don’t really need the parking tag (Brett and Lyft tend to drop you at the curb) but having a card to take a shortcut in TSA or to get transportation assistance would be a good back-pocket plan longer-term.  This is available from the DMV. I just have to work up the energy to go.
  3. The other thing I need to get before I head to the DMV is a detailed document from my doctor explaining my condition, my medication, etc.  This is something I need to just start carrying when I travel, because I’m also going to have to learn how to fly with medicines such as
  4. Get copies of my prescriptions – particularly the liquid one in the syringe.
  5. Upgrade travel plans. This trip is as frugal as I can get within my limits, but if and when I can afford it (and right now, I can), I’m going to upgrade. We are renting a car so I can limit walking.  We’re flying business class in case I need extra padding or movement to stay. It also allows us to board early without standing in line (if I have my documentation, I could ask for pre-boarding). And it allows me to check bags for free if I need to.
  6. Also on my travel plan is to request wheelchair assistance at the airport.  The Atlanta airport is massive. I used to skip the train and walk the tunnels between the gates to stretch my legs before cramping up on a flight.  Now, I know I will barely be able to walk from the parking lot without being exhausted.
  7. I’m also planning to ask the flight staff for blankets and pillows as necessary. 🙂

Starting A Packing List

I’ve read a lot of other blogs on the topic, and tried to figure out the best way to plan ahead.  I really appreciated the advice to start planning ahead early and to plan as comprehensively as possible.

I plan like that for backpacking, but not for travel to a major metro area.  What I’ve realized is that I need to think of myself in that survival mode a little bit more often than I used to.

  • I’m considering compression socks just to keep my feet and ankles happy even though it is just a 1-hour flight
  • Disposable thermal patches and hand warmers
  • The book seat – a lightweight bean bag chair for a book, tablet or kindle.  My wrists tend to be too weak to hold up a book, and I use this for reading, journaling and using my tablet
  • I usually use syringes for my humira, but I do have one extra sample auto-injector. I’m taking that version of my medication for the trip because it has less exposed needle, and disposing it will be easier
  • I’m packing my heating pad.
  • I’m seriously considering taking 2 of my favorite memory foam pillows to ensure I can get good sleep while away from home.

These are just my preliminary thoughts.  What do you think? Do you have any additional tips or tricks I can think about while I try to plan to travel?


3 thoughts on “New Spoonie Game = A Whole New Rule Book

  1. I forgot to say that I ALWAYS travel with a few sensory things to make myself feel at home. A lavender scented eye pillow, a handful of tea lights, headphones and earplugs, etc.

  2. Maybe a favorite snack or a few favorite tea bags? I find this can be comforting either en route or at my destination. This might seem pretty unimportant, but if omitted I find it’s something I quite regret!!

  3. Pingback: The Complaint Department | Alicia K. Anderson

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