So, I checked out this cool little link on the site called "Discover." Boy oh boy, what I could do with that data! Even though it is a bit simplified for what I was curious about, I was able to get the basic numbers I wanted to crunch.
Out of the existing members of this patient community, over 48% suffer from both PsO and PsA. The current number for this percentage is just over 1000 patients. Only 78% of these combination patients have answered the question, "Is your activity limited by your disease(s)?"
Judging by the majority's answer, I will estimate that 85% of combination PsO and PsA patients have to deal with their daily activities being limited due to the symptoms of their disease. That is... A LOT.
If you do not understand, I can try to explain it. Here is what my typical day was, while I was on medical treatment, and in remission.
6:00 am - Get out of bed, run down stairs, switch laundry
6:05 am - Run up two flights of stairs, open front door for dogs, get in shower
6:20 am - Brush hair, get dressed, apply small dab of makeup
6:35 am - Let dogs in, run down two flights of stairs, put dogs in kennels, run up one flight of stairs
6:40 am - Pour a bowl of cereal, eat, grab a frozen lunch out of freezer
6:55 am - Leave house and drive to work
7:15 am - Sit in traffic 20 miles from home cussing at idiot drivers
7:55 am - Arrive at work 35 miles from home
8:00 am - Begin repetitively answering phone with chipper friendly attitude
10:00 am - Collect paperwork, make multiple trips to car with supplies and/or recycling waste
10:30 am - Make 14 mile round trip journey through city for errands, multiple stops and getting in/out of vehicle
11:30 am - Return to office and repetitive phone calls while checking clients in and out
1:00 pm - Break for lunch, microwave my meal, walk/jog 2 miles, stretch
2:00 pm - Return to work, cue phones and revolving door
6:00 pm - Close office, cash out drawer, tidy workspace, file loose paperwork, prepare tomorrow's paperwork, jot down tasks on agenda
6:30 pm - Begin journey home
7:15 pm - Arrive home, let dogs out
7:20 pm - Throw saddle, pad, and bridle in car (45lbs), drive to farm
7:35 pm - Arrive at farm, whistle for horse
7:40 pm - Go on a 2 mile hike to find horse standing in creek eating grass from the banks
8:00 pm - Tie horse to trailer to brush and "tack up" (put on saddle pad, saddle, tighten girth, apply fly spray, take halter off, put bridle on)
8:15 pm - Mount up and go for a leisurely ride
9:00 pm - Return to trailer, remove tack, brush horse and hose down, return tack to car
9:15 pm - Return horse to field and drive home
9:25 pm - Eat supper
10:00 pm - Relax before bed
10:45 pm - Prep lunch and outfit for following day, let dogs out
11:00 pm - Go to bed
Got all that? Now, I will explain daily activities after having major lung surgery, being forced to go off of PsO/PsA treatments that were keeping me in remission, and having a major "flare" (a period of time generally more than 2-3 days, lasting up to months, years, or an entire lifetime, in which the immune system is in a constant state of inflammation, causing debilitating pain in joints AND soft tissues AND organs AND/OR eyes, confusion, severe fatigue, muscle spasms, muscle weakness, tremors, neuropathy, fevers, chills, migraines, and much much more).
3:00 am - wake up from stabbing hip pain, reposition
3:30 am - wake up from burning shoulder pain, struggle with pillows to reposition
5:00 am - wake up from searing knee pain and give up on the sleep thing for right now
5:15 am - continue stretching each individual muscle and joint that I can in order to be able to simply lift my own weight
5:45 am - roll, literally, out of bed and onto feet, continuing to stretch
6:00 am - stand up (there may be a slight stumble into the wall here, there may not be, but be ready for it)
6:05 am - put shoes on, walk dogs
6:15 am - shuffle, literally, around house because with every step comes excruciating pain shooting up heels, vibrating through hips, and concentrating at knees
6:20 am - stand briefly at cabinets looking for breakfast options (be ready for knives to dig in to every joint from my shoulder to my fingertips if I reach too quickly for a item), ask myself, "If I cook, will I be able to take the trash out and clean the dishes later?"
6:30 am - pick whatever will keep me from having to stand in front of the stove/microwave/oven for too long, shuffle back and forth from kitchen to dining area with one item at a time (so as not to drop anything), placing food and drink on table
6:45 am - hesitantly sit, bracing myself for sudden joint pain or dislocation or muscle spasms
6:50 am - eat and drink
7:00 am - sit at table staring at phone in order to take my mind off the pain from sitting down
7:30 am - slowly push off chair and table in order to stand, shuffle back and forth with bowl and glass to kitchen, one item at a time, to avoid any sudden weakness or tremors in hands which would cause a mess to attempt to clean up
7:45 am - Shuffle to bathroom for personal hygeine, gag on multiple vitamins and supplements, wonder how much good they are really doing
8:00 am - Slowly and carefully enter shower, attempt to wash hair with burning stabbing pains shooting through neck, back, shoulders, spine, hips, knees, feet
8:15 am - Reach for soap and miss because I suddenly got dizzy and light headed, sit down in tub with shower running to avoid fall
8:30 am - Crawl out of tub, slowly push off tub side to stand, slowly reach for towel in case another dizzy spell comes on
8:45 am - Ok, now I'm dry, attempt to towel dry hair
9:00 am - Begin application of over the counter skin salves to 90% of my body
9:30 am - Ask for assistance in impossible to reach places
9:40 am - Apply lotions with natural ingredients and essential oils
9:55 am - Shuffle to dresser or closet for clothing, being careful not to bend or reach or grab too fast
10:15 am - Ask for assistance with clothing
10:30 am - Take dogs for walk
11:00 am - Realize that I'm starving, shuffle around kitchen again for food...
So, I'm hoping you can sort of see the differences here. This last schedule of events is not necessarily every day, but it is a lot of days. Sometimes, I will actually get a full night of sleep and not wake up over and over from pain or migraine or fever. The days following a full night's uninterrupted sleep (10pm-7/8am) are generally pretty good. Those days, I don't need help to get my ointments on, or help to get dressed. Those days I don't usually have too many dizzy spells or sudden joint malfunction. Those days I can go grocery shopping AND unload the groceries by myself. Then I have to lie down, because the ever present pain starts pushing through the fence I try to keep it behind, and I will start having the dizzy spells or muscle spasms or sudden severe weakness or entire body trembling.
And obviously, my answer to the original question, is my activity affected by my disease, is yes. I don't WANT it to be. I try not to LET it be. Every. Day. I smile through the pain. I act chipper on the phone. You see little remnants of who I was before. When I was in remission. When my immune system wasn't attacking my body. Yes, I was "myself," the former version, when my doctors had options on what medications to control my immune system with. When they ran out of options, it began the journey to the "new" me. It began the cascade of immune symptoms that spiraled out of control and took over my body like alien invaders. Invaders that do not have Will Smith to get them back in line and blow them all up. Because the invaders are a part of me, there is no plan A, B, or C. There is no hero to save the day and the rest of my existence. It is possible that a combination of A+F+Z will force the invaders out, but it will take time and patience to try the unending combinations of natural healing methods, since my invaders are different than every other PsO+PsA patient's invaders and respond differently.
So, you make friends with the invaders. You have no choice but to keep them rested and fed and in a good mood. Your entire existence and strength depends on it. If you keep them happy, they will allow your body to do something that keeps you happy. Like, maybe help a stranger get her new farm ready for her horses. Maybe even ride your own horse. Spend time teaching your dog new tricks or reinforcing old ones. Type a blog to try to help others see that you are the very same person on the inside that they knew, you just have to react to every little detail a little differently, a little more slowly, with a lot more thought and physical effort.
Yes, my disease has limited my activity. It has changed my abilities. Sometimes, the invaders take over and change my emotional state. But I'll keep trying to make peace with them (myself), bodily and emotionally. I'll keep hoping for a cure, or maybe just another option for my doctors that won't take as long as me trying to figure out combinations of natural approaches that minimally help. Tomorrow, there may be light. Gotta keep fighting. Stay strong. Live in the moments of beauty and love and kindness. It's a scary world, inside me.
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