I don’t get it… I just said to my bf I thought I should maybe stay home… and he said nah you should just try and just come home if you can’t deal…
He’s always b*tching about how he thinks I should just stay home when I say I want to go to work…
People keep telling me to slow down… And then when I listen they tell me to keep moving… I don’t get it! Make up your mind!!!
If I go to work I’m an idiot who doesn’t think about her own health… When I stay home I’m lazy… I can’t do right!!!
I’m not sure why I don’t just stay home… Why is it better to be in so much pain over people thinking I’m lazy? But I prefer working over sitting at home watching Netflix while reading online and still not having enough distraction from the pain… Eventhough working isn’t enough distraction either… And makes it worse…
Awesome! I get to sit on a flip chair in the train next to some asshole who thinks it’s really annoying to sit next to me! Luckily my back isn’t killing me trying not to fall of the chair… and so awesome that there’s nothing to do on my phone to keep my mind occupied for 20 minutes… This is so much better then people calling me lazy!
Doesn’t matter that I prefer getting under the train then inside it… As long as they don’t think I’m lazy…
It has to be your choice, doesn’t it? Nobody can tell you what’s best for you. I agree, sometimes it’s a case of the ‘least worst’ option, in life generally and even more so with PsA.
I’m still alive aren’t I? So I could work… I’m exhausted though…
I’m soo angry at myself… After 2 days off I worked Friday, 6 hours… Then the weekend… and Monday morning I objectively should have stayed home… this morning definitely… But I’m still alive… I’m exhausted but not in much more pain then this morning… tonight I have a bday so tomorrow I’ll feel too guilty to stay home…
wow, are you going through the wringer right now. Welcome to PsA acceptance. You know you’re sick. Your BF knows it too. But right now neither of you has had the time to develop the skills to accept it and make room for it in your lives. This takes a WHOLE LOTTA TIME! Don’t beat yourself up for anything: fatigue; how you feel about PsA; how you feel about fatigue; how you feel about other people… It’s a big mess right now.
I think everyone on this site has gone through some version of your angst. Some to a lesser extent than others. But we ALL relate. I was helped tremendously by therapy and by this book: How To Be Sick.
It took a long time to develop the self-confidence about the disease and its symptoms to know when to call it a day, when to ask for help, and when to be really honest and up front and let people know (especially those closest to me) that joining in on activities was going to make me feel worse, even though I also felt like I was missing out.
I encourage you to take your time, stay home when you need to, and to work on trusting yourself and not the opinions or thinly veiled disappointments of other people. Judge for yourself what’s best for you and ignore (as best you can) the judgments of other people. You’re fragile right now so it’s time to show yourself some fierce compassion.
Oh, and happy birthday tomorrow . Enjoy your day and evaluate your best plan for Thursday when Thursday comes.
Depends on what their motivation is… The simple fact is with PsA, what doesn’t move rusts. As hard as it is to believe, what we think is extreme fatigue, is not. In fact the best way to overcome it is moving working and developing a routine and sticking to it. Doesn’t mean it always works out that way or it’s easy. There are times where we simply can’t but until we have experience trying we don’t’know.
If someone is supportive of all that great. They may be pushing you when you don’t particularly want to be but their concern is you. If they are pushing you because they think you are lazy or your BF has put a condom on his head so everyone calls him Dick then all they deserve from you is a one finger salute.
But the fact remains we can do a lot more than we think. We just have to do it.
That said, @tntlamb (and I do agree with you) there does come a point when the needle is on E. And you can drive at the most fuel-efficient speed, and avoid using your brakes, and hope that it’s mostly downhill from here, but at some point you sputter and stop. And, by the way, where Cynthia lives there is no “downhill”. LOL
As for the “slow down and get moving” paradox, the “get moving” part might have to be far more gentle and controlled than what you think of as getting moving. Gentle swimming (ya ya I know about your pool situation, just an example) or a short and slow ride on your fiets can do more good than you think. Even sitting on the sofa and stretching and rotating what you can will do you good. Tnt is NOT talking about 45 minutes on a treadmill or a 2 km jog around the neighbourhood. At least I hope he’s not. LOL Here’s an example of something that I just found, but there are lots like it around the 'net. Take it easy. Slow down, but keep those joints and muscles in motion. Or rust.
What is it with those people who sit on the flip seats near the door? They are really anti-social, aren’t they? I know, I’ve been there myself. That’s where the crackheads hang out too … I think they need to be able to get off the train fast to get to their next “appointment”. Or maybe all of them are just so pissed off about having to sit on the flip seat that they appear anti-social.
Oh I understand running out of gas. Today was one of those. PT early. Pool in the middle, humira shot at noon then OT ( apparently I have been walking wrong for 60+ years. More x-rays ( my new orthos response to, if you can’t see something on flat plates don’ even bother asking for an MRI. Everybody my age had patella tears… Then I get home to 10 inches of snow on the road up to the house… Maybe I’ll plow and maybe I’ll take a bath and go to bed. It’s prolly going tonight anyway.
So here is how it works:
Morning coffee: I can do anything
Before dinner wine: who cares what I do
After dinner Scotch,: what the hell I did I do now
As my mom said when she was 80 – “I’d rather wear out than rust out”. She’s still going pretty strong at 92 (she’ll be in about 2 weeks) and I don’t think she’ll ever rust out!
So your saying just keep running? I should just go back to working 8 hour days then and just keep going…
This is what I don’t get… When I’m running everyone tells me to slow down… Then I’m walking and everyone tells me to start running because it’s good for you…
You’ll get a lot of advice here. In my view, though maybe it’s not always obvious, you can take empathy as a given. For a lot of us who are older, hearing from young people with this disease in particular leads to a lot of swearing at the screen … it must be extra hard being young with PsA.
But the advice comes from the heart too, as well as the head, with the proviso that we can only speak from our own knowledge and experience. To me it feels like a responsibility to share what I know works and what works for me but it’s almost impossible to tailor it perfectly for any one individual.
Trial and error will lead to you discovering what works best for you. If you decide that you’d like a different job or to work fewer hours then all you can do is aim to achieve that and see how it pans out. Deciding whether to take time off is never easy unless you physically cannot move, again, you have to dig deep when making that decision. Knowing when to rest and when to push yourself is a skill in itself and of course life doesn’t always cooperate. What ‘everyone says’ is grist for your mill, stuff you can choose to use or not use, it is your call. It is better to have the input and the information than to be struggling on your own, but there’s always that responsibility to make choices. I’d rather others told me what to do all the time, I never did like leading, but when it comes to managing my PsA I’m the boss … I keep listening though, I can always do with more info.
@Cynthia, I don’t think it’s a case of keep running so much that tntlamb, Seenie and Sybil are talking about, but more learning how to keep moving in a way that doesn’t make it worse, if that makes sense?
Other than that, it’s a matter of finding how to manage the pain in every day situations. I’m currently trying to learn how to sit in an office chair for 8 hours a day, which used to be no problem. Now my hip and back decide to scream if I’m in the chair for more than a few minutes. Shifting position, getting up and moving a little every once and a while provide some relief, but it’s a process to remember to do it when I’m neck deep in a project.
Being sedentary for long periods doesn’t really help anything, I’m finding out, which is kind of the opposite of what our bodies have learned to this point - if you don’t feel well or you get hurt, don’t move it and you’ll be fine. That’s not an option for us. Not moving hurts.
You and I are kind of in the same place - we’re learning how to do this and manage it from scratch. It’s not what I’d describe as a fun time, but if we don’t learn it, we run the risk of being taken down by this disease rather than trying to metaphorically punch it in it’s stupid metaphorical face.
I know you all mean well… and I do appreciate it… but I feel like everyone got a pamphlet about how to live my life and are laughing behind my back at how stupid I’m doing everything…
Not at all laughing @Cynthia . Its a matter of learning your normal and maintaining. We have all been EXACTLY where you are. Dilorenzo is learning to sit in an office chair, believe it or not that’s a really big deal. I remember being there. I also remember my first few years in the work force. I think I used all my sick days for the school year by Winter break. (this was before PsA) I earned quickly that there was sick and not so sick and there was a difference. My adult daughter, who lives with us, just learned the lesson after losing two jobs for calling in too much. I just knew, she was going to call in last night. She certainly was sick enough in my book. She didn’t. I was really proud of her actually.
Here’s the thing about LWPsA. We are all writing together the pamphlet you seem to think we got,… Thats the way we help each other.
I’m sorry I didn’t mean people here… I meant family and people at work… the people here do have a pamphlet but there based on experience and not expectations of normal…
I’m going from quite positive, thinking I can manage this and work on eating healthy and working out… to 2 seconds later wondering what the point is and wishing it would all end… I feel like I can’t think properly… times flies by so incredibly fast I can’t seem to keep up… I forget everything… I feel like I’m in a fast river drowning and only able to come up for air every couple days… Everyone else has floaters and is telling me to just swim like they do… It’s not that hard…
My mom doesn’t have PsA…she’s had her share of osteoarthritis and a few “bumps” along the way, but she’s been really fortunate for the most part.
No, I don’t recommend running! I can’t imagine doing that! But, movement I think is healthy and uplifting.
@Cynthia YES!!! It is really hard. And you know we know that! The “digging deep” stuff is a mental process of discovery. One thing you learn quickly with PsA is that there’s no “normal” there’s no “baseline” there’s only today. You’re in a tough spot right now but there will be brighter days. There might also be worse ones! What you lack right now is experience to tell the difference (to Lamb’s point about sick and not-so-sick). While you learn all this you need to give yourself a break and listen for the caring voice in your head, not only the self-critical one.
. Enjoy your day and evaluate your best plan for Thursday when Thursday comes.
I will reply tomorrow…