How you are supposed to feel, Rob, is exactly the way you feel. This is where you are, and you have to deal with what you’ve got. There’s no manual that lays all this out. (If only there were!)
Some of us simply have a disease “nut” that’s hard to crack, and it sounds like you are one of those. Me too. In my case, it took two years from the time my joint damage was discovered (I had been very poorly for years at that point) to get a solid diagnosis, and then to find a treatment which started to work. It’s awful, I know. A lot of us here know.
A couple of things: I’m totally with Sybil on the percentages thing. Who knows what 20% less awful means? What’s important is what you are able to do with whatever improvement you are lucky enough to get. And it sounds like anything – even a small improvement in mood or in sleep – could make a big difference to you. In my own case, I know that the drug that worked for me, finally, after a long trial period didn’t solve my problems. I have no idea what percentage improvement it was, but I can tell you it was not 75, let alone 100! But it gave me enough of an improvement that it essentially enabled me to eat a little better, exercise a little more, and feel a bit better rested in the morning. Nothing dramatic, but it all adds up. Those small gains, over time, build on, and enhance, each other and that’s where the Cynthia’s exponential effect comes in. (I think, hope I’m not misinterpreting you, C!)
Your resolve to eat better and exercise more is admirable and what you should be doing, no question. But be honest, is it going to happen while you are in pain, sleeping badly and you’re battling fatigue that very few (besides us here) can “get”? Hmmmmm… Depressing thought, isn’t it? Psoriatic Arthritis IS depressing, and not only in the way that you might think. Do look into that connection between your disease and depression: I sometimes refer to PsA as a disease that “wrecks your joints and messes with your mind”.
Although the ideal solution is probably to wrestle your PsA into submission, it does sound to me like you could use some help with your depression sooner than that might happen. Have you spoken to your PCP about treating your depression? After years of my primary messing about with this anti-depressant and that, I finally bit the bullet and asked for a referral to a psychiatrist. One appointment, one change of medication and one dosage tweak, and I was better than I had been for decades. And it’s amazing what a bit less anxiety, a bit better sleep, and bit more focus can do for a person’s well-being! Tackling your depression is something that you can do immediately, and from which you could quite possibly see positive effects quite soon. There are even anti-depressants out there that help with pain. I’d suggest, though, that treating depression that’s all tangled up with your disease is a job for an expert, not for your PCP.
Rob, hang in there. And keep us in the loop: we hope that you’ll start seeing some small but significant improvements soon.