I don't get it

If only I could get this disease alone in a dark alley…

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@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.

Radical. Self. Compassion.

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@janeatiu I would totally recreate the fight scene from They Live with the disease if I could, only without the happy ending.

Mostly I just like referencing the fight scene from They Live though.

@Cynthia I can definitely understand where you’re coming from where all the healthy people just assume it’s a little pain and that they can tell you how to manage it. Can’t find it right now, but saw a video recently which described the difference between being “sick,” as in you’ve had a bad cold or flu that laid you out and chronic disease, which is, as we know, nowhere near the same thing. That is, rest doesn’t help, you don’t get one antibiotic that may help, and in 5 days you don’t get to bounce back and get back to work with no issues.

My wife (who has been nothing but understanding during this situation and hasn’t told me what I should do once, but is understandably confused and unable to see the situation as she’s not in it, like anyone) finds it very useful when I show her a story or article that at least helps partly explain the situation.

Might I suggest showing or explaining to those close to you the story @tntlamb recently posted written by the fibro sufferer about the spoons, or, heck, even co opting the story and acting it out with them?

What I’ve been finding is that, on top of learning to do things again (thank god I don’t wear shoes with laces, I don’t want to relearn tying my shoes), we do have to explain to those close to us, and occasionally those we work with, that “getting over it” is never going to be an option. If you can manage to find a good way to explain it to them, you may find them to be more understanding in the long run. We’re not just relearning to live our lives, but we have to reshape relationships because of it so that we can relearn to live our lives.

Of course, there’s always going to be those that can’t or won’t understand - there’s little you can do about them but shake your head and walk away.

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I mentioned the social awkwardness didn’t I? I have trouble having normal conversations… Let alone once about me not being perfect…

I have to (well they think it’s a good idea and I agree in theorie) explain at work in our biweekly meeting? (Where we talk about work stuff and changes etc for an hour) about what’s going on and how it’s going. I have no clue how to do that… It sounded so easy when she suggested it…

you mean this fight scene? They really get after it!

@Cynthia Print out a copy of the Spoon Theory for each in your meeting and pass it out at your next meeting Attach several plastic spoons to each then show them your copy with ONE. They should get the message

Also don’t forget the official LWPsA Winery. Ten Spoon Winery if worse comes to worse LOL…

No pamphlet! All trial and error (and mostly error). And most of us have had a lot more time to make errors than you have.

Frustrating, isn’t it? If there’s one thing I’ve learned, it’s to be kind to myself. Push my limits, but not too much. Throw caution to the wind, and pay for it tomorrow. Try and fail. Keep trying and end up sore. Try some more and … oh, wow, that worked!

It’s not easy. You can do it. Yup, another paradox.

As janeatiu said
RADICAL. SELF. COMPASSION

@tntlamb, thank you for the reminder about Ten Spoons winery. I’ve heard they are now producing an ale as well. LOL

I have to say I understand the situation of the opening post all too well. Sometimes I wonder why I don’t/can’t work - and then realise that work isn’t something that happens for half a day a week, which I can manage out of the house, but that it is a regular thing, and you have to be reliable. And that’s where the problem is.

Tonight I performed a gig for a couple of hours - my first since having PsA. I stood for a small portion, but sat on a stool for more of it. And I got home afterwards and thought to myself “well, if I can do that…” But it’s not that easy. I did it tonight, and it hurt, but it was rewarding to do. I had to do something that made me feel “alive” again. But now, a few hours later, I can hardly make it from the kitchen to the lounge, my feet are swollen to a size bigger than Donald Trump’s ego, and tomorrow I know I am going to feel like crap and be in agony (and have an ESA work assessment as well! Yippee!).

What I think I am trying to say is that I did that tonight - I achieved that. But to go to work, I would have to be able to sit/stand like that time after time after time, day after day, week after week. It’s just not possible. Sometimes we have to push ourselves to the limits once in a while just to give us a reason to live and to say “**** you” to the PsA: “I am going to enjoy myself once in a while!” But being able to struggle through once in a while isn’t the same as committing to a job - and there is a vast difference. I had a great time tonight. Could I commit myself to be able to do it again tomorrow or Saturday? Or even twice a week? Not a chance.

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You hit the nail on the head here for me, @darinfan. The comforting sense of reliability, that I can show up when I said and do the thing I had planned to do, as well as I said I would, for as long as I imagined I could is the thing I miss most in my post-PsA life. Accepting that each and every day is a series of “maybe” moments is a task unto itself.

BTW, congrats on the gig and for getting to do something you love!

Thank you. It was quite a night - I just have to keep reminding myself about these rare occasions as time goes on, and that sometimes we can forget about the PsA, if only for a few hours.

As for reliability, I agree. If I was at work I would be teaching at university - but could I guarantee that my legs (and bipolar!) would let me get there at, say, 9am each and every week for the lectures or seminars as required? No, sadly. And I would rather turn down the work that be deemed unreliable because, if and when the PsA gets under control, I don’t want THAT noose around my neck!

Just saying Cynthia … if you are struggling with references to the Winery etc., you are not alone!

Hang on, I get it, Ten Spoons Winery. I’m a bit slow. Which makes me wonder, do you find it easy to relax? There’s a difference between feeling that you’re ‘being lazy’ and truly relaxing. Sometimes just having fun, even if it uses up a lot of spoons, is the best medicine. And when we’re really up against it we forget what makes us happy or chilled, we’re constantly tense even when flaked out on the sofa. And physical / mental tension makes pain so much worse.

Going swimming is a chore for me but the physical relaxation it brings lasts about 24 hours. Laughing my socks off at the absurdity of … well, everything really, is still something I can manage all too easily. Relaxing in the evening rather than beating myself up for all the things I haven’t done is something I’m still working at, but worth the effort.

Wonderful darinfan! That must have been a blast!

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I still don’t get it… It’s something with the spoons and winery sounding like a place to whine about things?

I felt so bad on Monday and Tuesday that I thought it was a bad idea to go to my dad’s bday in the evening on Tuesday (he lives an hour and a half away, which in Holland means the other side of the country :wink: ) but then Wednesday I was feeling so much better… still in loads of pain but I could handle it better? I feel like how I’m doing has 3 parts… mood, pain fatigue… Right now I feel like I’m doing pretty good because my mood is great, I’m not exhausted (although I am tired enough to almost fall asleep when I close my eyes… but it’s not the all consuming tired…) but the pain is bad… I actually cried out… which I never do…

I do have a pretty bad cold… my PsA stuff always gets a bit better when I get sick… only to come crashing back when I’m almost better… I’m afraid to count it towards the new meds… I don’t want to get my hopes up…

I get the difference between having a full to do list and sitting down and truly doing nothing… I think I can manage that a bit too well… especially when I feel low… I just forget about everything…

@darinfan I get what you mean… for now I’m assuming I’ll go back to being trustworthy within a few months… Awesome that you had a good gig! Is that something you can do more often? (Not everyday but how many you can handle) or was it a one of thing?

Well there’s this ‘spoon theory’ thing … which I thought was a bit naff until my adult son asked if I ‘had enough spoons left’ to go somewhere or other with him. That’s when I realised it can be a handy communication tool. And then there’s a winery … where they grow the grapes & make the wine. I probably would do a bit of whining in such a place seeing as Mtx has put paid to serious wine consumption.

You know, it’s lovely to hear that your mood is great right now, don’t knock it! I hope it lasts, but if it doesn’t, it will happen again.

Some times you just have to take some time for yourself as Sybil said and really relax. Not that I am promoting “drinking” but its sort of like Drink Coffee you can do anything, drink wine - you don’t have to that, drink Tequilla - WHAT did you do.

The spoon theory is pretty much the way us old timers get by. We do what we can enjoy it and when we can’t do anymore just sit back and relax. (maybe with a glass of wine or tea)

As far as the winery goes, It started a number of years ago when we started embracing the “spoon Theory” A nice glass of wine was a good way to do it… Ten Spoons seemed like an appropriate wine.

Now for a deeper secret. Our Seenie is a certified wine expert (not snobbish) who before her feet pooped out on her conducted charity wine tastings. I make wine (I have a small vineyard and grow my own hops for ale) and collect Scotch. I also belong to several Scotch Clubs (long story) but I love single malt scotchs. Of course neither one of us imbibe much anymore because of best friend MTX but we enjoy pretending.

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Ah, now we are really exposing ourselves! Ancient history, my abandoned retirement career. Now I hang out online and talk about other things.

If you search for “Ten Spoon Winery” on this site you will fine a thread which contains this comment by tnt:

tntlambOct '15
I don’t particularly like this piece but it can be helpful for others to understand. For us I think it mucks around in self pity too much, but it is a great visual for spouses and family. Print two copies one for hubbie pillow and tape one to the fridge:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

BTW we have a great little winery up the Road called Ten Spoons Winery. Its was designated the official wine of LWPSA

http://www.tenspoon.com/1

The “official wine” thing is something that tnt and I just kind of made up because he happened to know about that winery close to his home. Other than that, I now consider myself to be an expert in whineries.

That should help you understand the ten spoons and wine and whine and … OK?

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You’ve nailed it, Cynthia. :grin: Low mood, pain and fatigue. All three of those can be caused by PsA. Aggressive treatment can make all three of them much better. But for aggressive treatment, you will have to find someone who is prepared to help you take the bull by the horns.

On a very good day, you might have very little of any of them. On a bad day, you probably have plenty of all three. The challenge is to do what you can with all three. When it’s as bad as yours is and mine has been, that means medical intervention. If you can get someone to say, yes, you have PsA and here’s what we are going to do … with a bit of time, trial (and error) and luck, you may find that your symptoms are manageable enough to be able to live your life in a reasonably normal way. Let’s not start debating what “normal” is! LOL

Interesting that you went to your Dad’s birthday, which should have exhausted you … all that talkee talkee talkee, food, drink, clean up … I get tired thinking about it. (For the uninitiated, Dutch birthdays are THE personal event of the year. You MUST attend, sit in a large circle with the relatives and friends, and make merry, and eat and drink, unless you are on death’s door. Not to do so would be a serious personal affront. But I digress.) The point is that something about that evening – as exhausting as it must have been – did you some good. It wasn’t the train ride. So any guesses about what might have been good for you? The mental escape? Listening to other people instead of the voices in your head? Delicious hapjes? After all of that, did you sleep particularly well? Interesting ideas.

I worked very hard for years and years to manage my mood, my energy levels and my pain. I survived. For a good while. Kind of. Well, not really. I was undiagnosed, but successful enough in my struggle with mood, energy and pain that my doctor thought I was just a lazy, whining, but otherwise healthy woman. Eventually I hit the wall. I had joint damage. When I finally got aggressive treatment from doctors who really understood the disease, my life turned around. I still struggle with mood, energy and pain, but I can manage them. Perfectly? No, but I manage. Except for the joint damage, though, I live a good “normal” life. Whatever that means. :wink:

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Thanks for explaining! Makes more sense now :slight_smile:

@Seenie haha i love how you describe Dutch birthdays! It wasn’t that big though… Half the people where sick (I think that’s the bug I’m fighting now) pretty much only the fun people where there… it was just really relaxed and fun… my bf drove us there… so no trains :wink:

Oh and the temperature went above 5°C which might be a bigger factor

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