Never-Ending Loop of Waiting and Wondering
I feel like I’m in a never-ending loop of waiting and wondering. There are so many things that we spend our lives waiting for when we live with psoriatic arthritis. But nothing upsets me more than the waiting and wondering, wondering and waiting. Over and over and over again.
Waiting and waiting and waiting some more
At this point, I can’t even worry about for “how long” a medicine might work. I can’t concern myself with planning to keep it working if I can’t figure out if it is going to work in the first place. One of the more frustrating things for many of us with PsA is that it is very difficult to evaluate.
Wondering: No clear answers
In many cases (like mine), blood work doesn’t usually give any clear answers about inflammation markers or whether a medication might be working or not. I go to my doctor and she asks, “Well, how do you feel?” How am I supposed to answer a question like that? I fill out the the pain scale form as accurately as I can, but I often still don’t have a very concise response. And here I sit...waiting, waiting, waiting.
Is this the best it will get?
I have no idea if this is the best I’m supposed to feel. If a medicine is “working” will I feel like my old self again, or just slightly better than this? Or perhaps, it is working and this is as good as it will get? I don’t even know. What qualifies as “working?” Hmmm. I wonder, and I wonder, and I wonder…
Symptom or side effect?
To further muddy the waters, there are many days when I’m not sure, especially when I was on methotrexate, what symptoms were PsA related and what were side effects of the many medications I am on. Are my aches a natural progression of the disease? Is the fatigue a simple product of doing too much yesterday or am I getting worse? Hmmm. I don’t know, maybe I should wait and see.
It feels like forever...
Another thing to factor into the answer of this seemingly simple question is how long. How long have you been on the medicine? Many medicines can take up to six doses to work and at an every eight weeks dosing schedule that adds up to quite a bit (roughly 48 weeks) of time waiting and wondering. Weighing out new symptoms with common complaints, wondering what is new and what is old. Waiting to see if any of it makes a difference at all.
I know I can get very frustrated, and oftentimes I’m rather impatient. And I know there are more productive things I should be doing than focusing on every ache and pain. Perhaps I should do some yoga, read up on a new diet, or maybe meditate. All of those things would be much more productive than sitting here twiddling my swollen thumbs. But I don’t know, I think I’ll just sit here, waiting and wondering.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?