For me, in the very beginning, I was sure that the PsA was in control. And I fought it every step of the way.
Twenty plus years later I can't really claim to be in control. But I sure feel a lot better having learned about the disease and treatment options and having made some good [and bad] choices about how to proceed with treatments.
So in a way, I DO feel like I have some measure of control. But on a different level. I feel like I can choose to go bananas one day and tackle a major project around the house, and then choose to spend the next day doing something very low-key as a form of compensation. OK, so it's not control over the disease itself, but it IS [I think} control over some flares brought on by over-activity. And that's better than nothing, right?
What about you? Have you gained some form of control over the disease?
Since going on a biologic, I feel there is more control, but the bottom line is no. I have better control over how I react to it, and better control of my decision making about treatment, but I still feel like I’ve been invaded by a monster.
What has improved greatly for me is the confidence and trust that I have in my doctors. I do feel that I have excellent specialists who are doing everything that can be done. That is huge for me.
This is a great thread and gives lots of food for thought. If I look at my PsA as a separate entity then I realize it’s a give and take relationship and not every day is the same. I don’t spend much time thinking about this disease and even less time talking about it. My normal pain often changes to a new normal pain and I just go along with it, is it acceptance? I have no idea its just what I do. I have a very high pain threshold which is a godsend for how I feel but maybe not so good for the damage that is being done without my realizing it. Mornings are difficult because of pain and stiffness, so I allow myself time when I wake up to do some stretches while still in bed, this helps. It usually takes me anywhere from 45 minutes to an hour after I wake up before I can properly move well enough to shower, I have adjusted to this therefore its become a “normal” for me. Fashion has long since given away to practicality and comfort and I don’t even miss it anymore. This last several months I learned how to sign the alphabet to help keep dexterity in my fingers while I was laid up sick from other issues.
There are many things I no longer do as I used to but have found new creative ways to get the job done, sometimes it’s a challenge and other times it’s a great sense of accomplishment. The hardest part of this disease is just when I think I am doing well, the ugly beast rears its ugliness and sends me into a tailspin of uncontrollable pain that makes me cry out, they are the roughest times because its not just the pain, its also the fear of what this disease can do and the emotions it evokes. Those are the dark times when all rational thoughts fly out the window but thankfully they don’t last long and I move past it and back into my “normals” again.
After four months of being off work I have just completed my second week of ease back into the work place, its been difficult but the overwhelming sense of accomplishment of my achievements has been worth the pain and tiredness and I am looking forward to going back to work on Monday.
So to answer the question of who’s in control, the PsA or me? I would say its an ongoing war but I am winning lots of battles along the way and that is what keeps me in the fight.
“A more peaceful way to live is to decide consciously which battles are worth fighting and which are better left alone.” ~Richard Carlson
That’s how I approach my PsA. Some days I give up a small battle to accomplish something because I am too fatigued or in too much pain. I do so knowing building myself back up will let me enjoy a day with my family or friends. Sure I would love to clean the floor, but now I just easily say keep your shoes on downstairs, and have dinner with my boys instead.
I'm a lot better then I was and I'm totally learning to accept and embrace it rather then fear it. I've really grown this past few weeks (it's like a light went off) and I now know this is with me for life. It's been an emotional roller coaster and I know I'm just starting my journey, but I can say one thing for sure...this site and all of you have made a huge impact on my acceptance, my life and I feel a lot more peace then I did.
I know it's a journey and there will be constant changes and managing will be life long. I do hope that one day there will be a cure. I'm grateful for the here and now and this is helping me put my focus on living in the moment...something I've always preached, but never really did. I now realize it's the only way :-)