(*NB: this is not a finger wag. This is a "rah rah you can do it" post. But I'm British and so I apologize if it reads as though I'm from Nanny 911. Nobody has behaved inappropriately!)
There is no new normal. Sure, having a new diagnosis is a kind of new normal, but with PsA there's no new baseline of normal. Each time you think you've found one--poof--away it goes and there you are with a new something to cope with, contend with, grapple with.
It's great to see many new members on the site. For folks who have been diagnosed for a while and on the site for a few years it is always interesting to see new members come on board and to relive our own diagnosis experience and treatment journey. Watching people, in a similar situation to your own, struggle and learn to cope engenders empathy and admiration--and the desire to offer advice. Which is why I'm writing.
Each new twinge, ache, sprain, tear, swollen joint is an invitation to dwell and linger on the diagnosis and on the hope for recovery. But that's a dangerous place to hang out. Nothing will miraculously take the disease away. And even the best and most aggressive course of treatment takes time. And the best treatment protocols have to change because your body and your disease change, too.
Sure, there are things we can do to support our ailing selves along the way, but living life is the goal. Not kicking PsA in the butt (you'll probably injure yourself trying). Not curing ourselves (we can't). Learning to accept the disease and to commit to living with our diagnosis (as opposed to engaging it in hand-to-hand fighting) is the not-so-simple path to well-being taken by those of us who have been diagnosed for a while. We are through the shock of diagnosis and no longer find much curiosity in all of our ailments. We try to embrace PsA as part of who we are--our daily reality--and make small and simple adjustments--on a daily basis--so we live as richly as we can.
So for all the new members of the site:we support you. We know this is all scary and weird and new. We would like to help guide you through the maze of acronyms, self-advocacy and treatment options. But our goal will be to help you get back on your feet. There's no new normal. There's just what is real today. Tomorrow will certainly be different.
Amen. Thank you for posting this. I am so frustrated lately mainly because normal is a moving target that moves too quickly and there is never enough time to adjust. When I look back at where I was at diagnosis, I could kick myself for how wrapped up I was in the small stuff; It seemed huge at the time. Even with all of the loss, it still isn’t as bad as it could be. The changes in my life have really allowed me see what is the most important to me and what was trivial. Things are so much more of a struggle when they used to be effortless! That just means that I’m a lot less impulsive and try not to waste valuable energy. I’m able to give what I’ve got to my family and the occasional me-thing. I really wish we had the ability to talk to our past selves! I would’ve told myself to do what you can when you can and that I hadn’t beat myself up so much when I made to much hay because the sun was out, and had to pay for it with those recovery days. Those times that I felt sorry for having this disease were wasted times. I think I’m rambling now. That happens.
It's just one long line of acceptance/forgiveness rinse/repeat over and over, isn't it? I agree about going back and talking to my past self. I would definitely wag my finger to myself. I know your journey has been rough lately so I'm glad you took from this what I do too: there's not enough time to chase things that don't matter. If having PsA gives any gifts at all (?) then learning what matters most to you (and it is likely different for every one of us) is the takeaway. Cheers, Grumpy!
It's all true. I'm feeling extra good .... almost like I have not got PsA. I've probably said similar things before but this is a particularly good time. Do I think I'm in remission? No. That would require the test of time. Might I feel like sh*te tomorrow? In my experience that is a distinct possibility. Living with PsA is tricky and anyone who thinks they can get the hang of it straight off is either exceptionally gifted in 'emotional intelligence' (which is possible) or fooling themselves. I don't want to play any sort of blame game .... we are all bound to feel that we've got it wrong looking back and we'll get it wrong again for sure. Meanwhile I think we should live life as well as we possibly can & look out for each other.
I'll add my voice to this. The years 2013 and 2014 were sheer hell but my husband and I started talking. We've continued really talking through 2015 and into this year. But one morning, late summer last year, we both woke up on the wrong side of the bed and things escalated--heated words in the car on the way to work, heated messages that morning, more heated words and a conversation by the river at lunch. When I came back, a friend asked if I was okay. I said I would be. She said you know, the bad times are what tell us just how good the good is.
I thought about that statement a lot. Paul and I talked about that statement a lot. I thought some more about the statement and about us and me annnnndd....
The upshot is that I was going to live life the way Paul does--concentrate on the few things really important to me/us--and let go of the rest.
Paul says I've finally realized that while PsA is part of who I am, it doesn't define me as a person. He says I'm also finding my voice as someone whose life includes PsA but whose life isn't over because of it. The man knows me entirely too well--we've done more in the six(?) months since I started realizing that than in a very long time.
I have so much good in my life: Paul, the funniest man I've ever met; the relationship we share; good friends, a job I love (mostly), good books, good music. After so long, I can finally look at it as the bad (PsA--today both of my arms are giving me fits) showing me just how good the good is--
Sybil, Sixcat, thanks for offering your opinions, too. I'm not normally a silver-lining kind of person but I agree that these big life lessons can be about celebrating the good things. No more pity parties! (well maybe one every now and again...)
Thanks for posting this Jane. I allow myself to wallow oh so briefly on occasion when things are particularly bad. And then move on. It’s not useful. As to “normal” being a moving target? Absolutely. I have resigned myself to the fact that this will progress no matter what I do. I can use meds and lifestyle to try to slow things down, but it will progress. Fighting it is not helpful. Learning how to live with it is much more helpful.
Now it is time to go lay down for a nap. I don’t want a repeat of yesterday when I was so tired that I was on the verge of tears and definitely not functioning.
See, Stoney, you know how to do it. Even if you did to much yesterday you learned from that and will not make that mistake today! Thanks for responding! Cheers to you.
I've been diagnosed pretty much four years now. In those early days post-diagnosis I was in a complete spin trying to work out what the hell was happening to me and what it all meant. No two days were the same and I had no idea what tomorrow would bring. Much of the time the only certainty was that night would follow day. Every new 'symptom' had to be analysed and researched.
At some point, and I'm not exactly sure when it happened, I realised I had a pretty good grasp of the fact this was, and always would be, unpredictable and that the best I could do is "call it on the day". This was not my new best friend but a companion I had to rub along with for life. When I accepted that and channelled my energy into living I began to reclaim some of my life. It wasn't my old life but it's still a pretty good one. And the only one I'm going to get.
I respect my PsA and listen to my body when it needs to move or when it needs to rest but fighting something I have no chance of defeating is pointless. This isn't what I bargained for but it's the hand I've been dealt. The same as everyone else I have bad days and good days. PsA has taught me to appreciate the good days more and value the things which nourish my soul.
And I am immensely grateful to everyone here on LWPsA who have been my travelling companions on this journey.
Speaking of nourishing one's soul--today, that nourishment is in the form of the new Vince Gill CD Down to My Last Bad Habit. I've been listening to the thing since 7:45 this morning. The man had to have been listening to Eagles when he wrote the title song.
This is how I'm nourishing my soul lately. I tend to say "eating my body weight in xxx". Yesterday I did the math and I'd need at least 200 packets this size to make that claim. I'm looking at it as an aspirational lifetime goal.
Can I be your BFF, Jane??? Robin eggs are one of my favorite candies ever!!! They're my Easter-time splurge!
I think I've finally come to grips with my PsA. I'm like you, Sybil, feeling pretty good. It's interesting what "pretty good" is though--and I'm sure you all will agree that pretty good means some constant pain, discomfort, joint/tendon annoyance or whatever you want to call it. But, now it's acceptable/tolerable compared to what's been in the past, right?
I was thinking earlier today when someone was talking about a friend with terminal cancer how I'm lucky if I only have to deal with PsA in my lifetime. Like you all said, we don't know how we'll feel from day to day, or how severe our disease will get, or what other heartbreak we'll encounter down the road. I'm getting better these days at accepting things as they are and getting the most out of life. I've had a pleasant, simple life--for the most part, I'm very thankful for all the goodness around me. LWPsA is one of the good things I'm thankful for. :-)
Such a lovely post, Jane. As a new member here, and only having been diagnosed 2 weeks ago, I can't tell you what this site already means to me. It's been harder to be down in the dumps the last few days knowing there are so many of you cheering each other on, being so welcoming and sharing your stories. Sometimes we just need to see things from a different perspective to realize how lucky we already are :-)
I love this discussion, although my train of thought for a response was completely derailed by the photo of Cadbury Mini Eggs, as I've spent the past couple weeks convincing myself not to buy them and I LOVE them!
A friend once asked me, "Now that you're on meds and feeling better, are you getting back to normal?" My response was, "Surprise! is my new normal. I can go hiking one day and be fine the next, or I can spend a day lounging around reading and be in horrible pain the next. Every day is an adventure. And actually, I'm in a considerable amount of pain today, but I am walking better, so there's that."
Many people can't understand how I'm ok with this being my reality. I often tell people that I can either wallow in self pity or I can LIVE and enjoy my life. I choose to, as Ruby Gloom says, look on the bright side of the dark side. :)
I do get frustrated at times, but much less now that I've ceased comparing my life now to my life "before." My life is actually better now than it was before my PsA / AS went haywire. I take time to enjoy life. I concentrate on things that are important and let the rest fall away.
And thank you, Nym, for today's nugget of wisdom: look on the bright side of the dark side. We don't have a choice, but putting that way makes it sound, somehow, exotic and special. Which, of course, it is.
And thank you, everyone, for being here with us and for us.
