Learning to Improvise

I am a planner. I’m the kind of planner that thinks bullet journals look cute for beginners. I’m the kind of planner who makes plans for plans, and contingency plans those plans. I’ve said often that I’m very good at being spontaneous, as long as it’s on my to do list.

Psoriatic Arthritis has forced me to learn to improvise.

I’m writing this post because I have a lot of friends and loved ones who are asking about my experience, and seeking to understand what I’m going through.

I’m also writing about it because sometimes explaining things helps me make sense of them. And right now most of this doesn’t make much sense. I feel like I’m going through a huge learning curve right now with the way my body works. I’m learning a whole new way of being.

The uncertainty of it makes it impossible to plan.

Energy-Budgeting

If you’re not familiar with the “spoon theory” I recommend reading it.  It’s essentially a way to explain the fact that people with autoimmune diseases have to budget our energy every day, all day.   These units of daily energy are measured out in “spoons.”  This theory got its name from an example using diner flatware, but it still makes me think of Mary Poppins.

These spoons are both sugar and medicine.  I notice that I have more energy on the days I have less pain and inflammation. When my joints are puffy and painful, I have no energy whatsoever. Its as if my energy is part of the fluid puffed up around my joints.

On a GOOD energy day, I know I have enough energy (spoons) to make my own meals, interact on work phone calls, brush my teeth, and maybe take a shower. I will have enough energy left over if it’s a super good day to play fetch with the dog and hang out with my husband in the evening. If I want to do anything beyond that, I’ve got to give something up. Laundry? No fetch.  Sex? No fetch and I won’t make dinner. Go to an appointment? (Which adds in getting dressed and taking a lyft somewhere) then I probably won’t be able to handle both working and the appointment in the same day, and I need to take a shower the night before.

As you can see, this is less energy than I used to have on an average day. This is not a normal person’s amount of energy at all.

On a BAD energy day, when I’m in pain and super puffy, even my phone or reading novels taxes me too much. I can barely move. I’ve had bad days where I sleep 20/24 hours several days in a row. Where I don’t eat, brush my teeth, or change out of pajamas. I barely move.

The thought of my old commute – walking a half a mile to MARTA, riding the train to North Ave. and then walking 11 blocks to the office just to get some fresh air — is mind-boggling.  That would take everything I’ve got. I’d be totally depleted just walking in the door at work.   In fact, right now, I can’t even walk around the block on a good day. It’s likely that on an average to good day now, I wouldn’t make it the eleven blocks.

I want to make a plan. To contingency plan the plan. I don’t know whether I can successfully go grocery shopping or whether I’ll end up sitting down on the edge of the meat cooler half way through.

My energy has to be budgeted but I have no idea how much I have to work with. So I’m scrimping and saving all the time. Because I never know when I’m going to crash.

It definitely forces me to live in the moment. But it’s maddening, because each moment might be stealing from the next. What if I think I’m up to a trip to the library, and then it turns out I’m not?  It’s humiliating to have to sit down on the sidewalk, or in the grocery store. I don’t look sick. It takes too much energy to explain that I am, and not contagious.

Looking for Patterns

The human brain is a pattern-finding machine.  Patterns would help me make sense of this whole thing. Like the night I solo-camped in the woods and learned that the tree branches clattering immediately preceded the scary sound of dried leaves on my rain fly.  Knowing what happens next gives me a sense of control. And it lets me budget and make sound decisions.

There are precious few patterns. I have read on other blogs that people with PsA feel blind-sided by their disease. That it is a roller-coaster of feeling fine then feeling awful with no predictable trend.

I might have to adjust to not knowing. But until I prove that out, I’m not buying it. There’s data, and I’m going to find the freaking trendline.

Here are the patterns I’ve noticed so far:

1. The achey stiffness in the morning is low-mobility, but also low-pain. I’m able to think more clearly and accomplish harder tasks in the first 1-2 hours after waking up.
2. The NSAID I’m taking with breakfast wears off at 3 PM. And my circadian rhythm craps out at that time. If I snack, re-medicate, and take a short nap or even meditate at that time, I get a second wind. If I don’t, I get super cranky and snappish.
3. The once-every-2-weeks injection wears off the day before it’s due. And takes 3 days to kick in after I do the injection. That Sunday-Wednesday period will need to be off-limits in terms of planning.
4. I’m collecting more data points to see if my period makes the inflammation worse.
5. I’m collecting more data around food that may make the inflammation worse. Gluten of course does. Alcohol definitely does, so I’m now a dry girl.
6. Stress is one for-sure trigger. The more stressed I am, the worse the inflammation, regardless of medication.
7. I start rubbing my hands and wrists before I even know they are hurting.

It’s a start. And I’ll keep putting it together until I crack the code of these patterns. It does help to know that when I start rubbing my hands I need to take immediate action. That’s a good warning light. The problem is that it’s followed too closely by the crash to help with something like going for a walk.

Not Your Grandma’s Arthritis

I do want to clear up one thing that I think is a misconception.  The only thing in common between osteoarthritis and psoriatic or rheumatoid arthritis is joint pain. The word arthritis means joint pain.  Beyond that, they are massively different.

Osteoarthritis is a wear and tear mechanical form of joint pain. It happens in one joint at a time, and is caused by old injuries that flare back up later in life with overuse. It can be made livable by exercise, mild NSAIDs, and braces and wraps and nice supplements like glucosamine.

Autoimmune forms of joint pain are whole-body affairs. My whole body is inflamed. It’s not just one joint that hurts. My most common combination of joints are my wrists, ankles, backs of my hands and feet, and all of my fingers and toes. Frequently, my hips or lower back get in on the action. When it’s really bad, my shoulders, neck and jaw do, too.

This is why the fatigue I mentioned above is such a huge part of it, it’s affecting my whole body at the same time.

Beyond being in way more than one joint at a time – it hurts all the time. No matter what I do. I can lay perfectly still and not use any of my joints and they can all stab, throb and pierce with pain.  I don’t have to do – or not do – anything to hurt. And the only thing that makes it feel a little better is to be supported by heaps of memory foam and to be wrapped in heating pads and electric blankets.

What’s really horrible is when I have to lay that still and I’m not fatigued, and my mind is trapped in a whirlwind of frustration of all of the things I can’t do / should be doing. The fatigue is kind of preferable, then.

All of this came on pretty suddenly. I had minor symptoms – my wrist hurt, but advil made it better. I was more tired than usual. But I didn’t have all of these symptoms until mid-January. It’s a ton of bricks, and I don’t know my new normal yet. All I know is that I can only make plans in pencil, and hope that the medications make it go into remission.