Just a couple of months ago I thought I might be in remission. But heaven knows I'm miserable now.
I've been lying awake feeling wretched, wondering why the hell I didn't lay it on the line with my rheumy when I saw him a fortnight back. I do know why: I was playing catch-up, as usual. I mentioned briefly that everything hurt but I hadn't had time to take stock myself, let alone to explain how the disease was affecting me to another person. Then there's the wishful thinking 'this will pass .....'. Fair enough, but evidently not just yet.
Last time I experienced anything like this much pain etc. I got really angry in the end and very determined. That was exactly what was needed to claw my way out of The Gap and get the right treatment. I can't stay angry for long though, it's not sustainable. But I can't do miserable for long either.
So anyway, lying awake in the dark .... unable to get to grips with what's happening, throat's tight, chest hurts, why do my legs hurt all over? And my arms? I'm meant to have a joint disease for goodness sake .... is this a flare? Or is Humira failing? Maybe I've gone & got something else now, something even more serious .... flipping heck I've had it, I'm doomed etc.
Then I came over all buddhist (don't worry, it won't last). And it occurred to me that PsA is just like a river. There aren't any patterns. You think you can see patterns on the surface, but they're in constant flux, it's all movement and change. I can't make much of this idea, it doesn't really hang together as a concept and I wouldn't be so insensitive as to tell anyone else to see their PsA in such a benign way, but for now I'm living with this river, it ebbs and flows, it can be destructive, but it's just a river. I can visualise it and the image makes a difference to how I feel. And no, I'm not on drugs, apart from Humira and Mtx.
So what stories do you tell yourself in order to come to terms or to fight the disease or both?
Gosh what a miserable night you've had. I hope things feel better today. I think of my PsA as 'just psoriasis - again'. When I had skin psoriasis badly as teenager I finally got around to thinking of it like that and things calmed down considerably as a result and I got on top of stress levels and my skin slowly cleared up. It made me feel less scared and that helped enormously.
So I've taken on the same attitude again now. And it does help. There are good days and even more than good days. There are also completely awful days and worse than awful days. But by not letting myself think every awful day is just 'it' and how's it's now going to be from now seems to make more better days happen instead.
It is 'just psoriasis - again' and it's a completely pain in the ass but....it's so silly as it does as you say ebb and flow so I'll always have good days to enjoy. I simply just have to look for them and sometimes wait for them. And by not permitting it to persistently stress me out I'm always (hopefully!) at least one step ahead of it. I simply won't and don't let the horror of it get space in my brain for too long.That makes me feel like I've some control and that in turn makes feel so much better.
Hope this helps. and so hope you feel a lot better today.
That word 'just' seems to feature for both of us! Good word that. Not too keen on it when doctor's use it dismissively but it's great one to use in the privacy of our own heads to help get things in perspective.
Wondering how you're doing with treatment etc. ..... or maybe that's something you'll post about when you're ready. In any case, thanks for your response & I hope today's a good one for you too.
Poo therapy said:
Hi Sybil,
Gosh what a miserable night you've had. I hope things feel better today. I think of my PsA as 'just psoriasis - again'. When I had skin psoriasis badly as teenager I finally got around to thinking of it like that and things calmed down considerably as a result and I got on top of stress levels and my skin slowly cleared up. It made me feel less scared and that helped enormously.
So I've taken on the same attitude again now. And it does help. There are good days and even more than good days. There are also completely awful days and worse than awful days. But by not letting myself think every awful day is just 'it' and how's it's now going to be from now seems to make more better days happen instead.
It is 'just psoriasis - again' and it's a completely pain in the ass but....it's so silly as it does as you say ebb and flow so I'll always have good days to enjoy. I simply just have to look for them and sometimes wait for them. And by not permitting it to persistently stress me out I'm always (hopefully!) at least one step ahead of it. I simply won't and don't let the horror of it get space in my brain for too long.That makes me feel like I've some control and that in turn makes feel so much better.
Hope this helps. and so hope you feel a lot better today.
Awww, Sybil. I hope you have a better rest tonight: enduring a night like that is awful. Could you have caught a bug that is floating on your river maybe? Or might it be stress that's churning the bottom of your river up into a murky mess? Whatever, I hope it flows away, and soon.
Is there any chance that you might be able to make an appointment with your lovely rheumie for a couple of weeks down the road? If you do that, you can always cancel it if you are feeling better. And if you make an appointment, inevitably you WILL feel better before the appointment rolls round. That's just how it goes. But if you don't make an appointment ...
Your visualization is interesting. I can't say I visualize my disease as anything except "me". But maybe I should think about that. In any case, I hope you are relaxing so that you can rest properly tonight.
I think it is PsA, Seenie, probably. It's been like a pain vest with matching trousers and gloves. Not so bad this evening.
Usually if I get the heebie jeebies at night there's nothing I can do except wait for the sun to come up and chase them away. And visualisation techniques and suchlike usually leave me cold. So it was a real surprise to get an image in my mind that somehow seemed to neutralise the misery and even more of a surprise to find it so calming. Doesn't make any sense but I love it! Couldn't help wondering if others have similar strategies or mental tricks.
Yes, I might have to get on the blower to the rheumy department if this continues. I'm picking up NSAIDs tomorrow. Thanks for your great response.
Ugh, Sybil! :-( How are you feeling this morning? I hope whatever it was was a ridiculous flare, but why so extreme? I haven't been paying enough attention t Ôthird group
I know, it's odd. But PsA is odd. My left knee is swollen again and my rheumy thinks the disease is not quite as well-controlled as it was. It was the shortest appointment ever in terms of addressing the disease though .... maybe 10 minutes including an examination & it was my first appointment for 8 months. Most of the time was taken up by discussion about the treatment issues moving to another town will cause. I think there were things I should have mentioned and didn't.
What has really hit home is that when people are in pain nothing happens quickly enough. Any change of treatment, investigation etc. will take an age. So meanwhile something has to be done about the anxiety and fear pain causes. And I'm taking pain relief too ..... I'm like you I think, I resist that if I can.
How are you these days?
Grandma J said:
Ugh, Sybil! :-( How are you feeling this morning? I hope whatever it was was a ridiculous flare, but why so extreme? I haven't been paying enough attention t Ôthird group
I don't think I think about my PsA as anything except it just "is".
But I certainly understand the middle of the night heebie-jeebies. And I just try to stay as calm as possible knowing that when the new day dawns nothing will look so bad and that whatever pain I'm in will, eventually, get better.
As Seenie says I think your river has been churning a bit just lately. In fact, it's cutting a whole new course through the bedrock and each time it meets a denser bit of underlying stone it's having to work harder to carve it's way through. Once your river reaches the sea I'm sure things will get back on a more even keel. Do you think a depo-medrone shot at the GP's may help settle the inflammation back down?
Haha! I've set off a right old metaphor party here! I'm trying to add to it but all I can think is that I probably do have rather dense bedrock.
Stress can have a very definite physical effect on us, that's for sure. I really, really resent that but in a way getting such a sharp reminder is probably all to the good.
I do agree about the steroid injection, though I'm trying to put off asking for that until we move house. Thanks Jules!
Jules G said:
I don't think I think about my PsA as anything except it just "is".
But I certainly understand the middle of the night heebie-jeebies. And I just try to stay as calm as possible knowing that when the new day dawns nothing will look so bad and that whatever pain I'm in will, eventually, get better.
As Seenie says I think your river has been churning a bit just lately. In fact, it's cutting a whole new course through the bedrock and each time it meets a denser bit of underlying stone it's having to work harder to carve it's way through. Once your river reaches the sea I'm sure things will get back on a more even keel. Do you think a depo-medrone shot at the GP's may help settle the inflammation back down?
Oh my gosh, embarrassing. I attempted commenting last night but realized I was dozing off when my fingers fell asleep on the tablet and made some funny words....I thought I woke up enough to edit my comment off the page with the intention of re-commenting after a good night's sleep. Ugh......sorry!
Grandma J said:
Ugh, Sybil! :-( How are you feeling this morning? I hope whatever it was was a ridiculous flare, but why so extreme? I haven't been paying enough attention t Ôthird group
Lol! Don't worry! I just thought you were inventing a new language. Where did you get that 'O' with a hat on? Can't see one on my keyboard.
Grandma J said:
Oh my gosh, embarrassing. I attempted commenting last night but realized I was dozing off when my fingers fell asleep on the tablet and made some funny words....I thought I woke up enough to edit my comment off the page with the intention of re-commenting after a good night's sleep. Ugh......sorry!
Here I am again, but totally exhausted from working all day and needing more sleep. I just wanted to comment and ask how you're doing now, Sybil? It's been a couple days and I'm hoping the flare you were having has subsided (I wanted to say "flair" but that wouldn't be funny--if you're still not feeling well!).
I wasn't sure if you had already moved, but I see that's still in the future. I'm sure the stress around just thinking about that is not making things any better. At least for me, moving would be stressful, and I notice off and on when I worry and get anxious my hands will ache, stomach hurts, back gets stiff, etc., etc.
Did you get the injection? I know you're not too quick to take the pain pills--we're alike that way, although more often now I take an ibuprofen. I guess one won't hurt.
You asked what we think of our PsA. I think my PsA has caused me lots of anxiety. And, it's weird because I think I've gotten very accustomed to having some degree of pain all the time and luckily I can still walk and do most things, just at a slower pace. But, the slower pace annoys me. The fear of the unknown is really stressful. Before I had PsA I never worried about my health, really. Worry was temporary. Now my health is on my mind almost all the time because PsA unfortunately isn't temporary, and biologics stop working and joint damage continues, if at a slower pace. My feet and back worry me--my back especially, because if that fully goes out I lose my independence, not to mention endure horrible pain. My PsA is a reminder that I'm fragile *ugh* and not totally in control of things, despite taking the injections and being careful--nothing's a sure thing. PsA has been a real eye-opener for me.
With all that said, and I've said this before, there are so many terrible diseases my PsA doesn't even come close to. When I'm having more pain than usual and feeling sorry for myself I need to remember that, stay in the moment and not worry about the future.
I so often think that the disease affects you & I in similar ways. I can relate to so many things you say here, I really can.
I'm not sure how to discuss the pain thing, that was about 36 hours of hell and I'm okay now but it hasn't gone, it's just lesser. Lately there have been a few times when I've felt overwhelmed and I need to get an angle on things over time. I'm kicking myself for not discussing all this more with my rheumy, it's a combo of denial and stupidity.
My back is stiff a lot of the time and I have applied dollops of denial. I realise I've been looking at different ways of doing certain tasks, or avoiding them, without acknowledging to myself why that is necessary. I honestly think that different individuals have their own way of handling all this and even denial has its uses ..... up to a point. I want to do a big tall painting & have been thinking about doing it in sections and whether it'd be better to lay paper out on the floor, awkward getting down and up again but worth a try. The reason I didn't ask myself why that was necessary was because, as you say, none of this is likely to be temporary and I didn't want to go there.
PsA is not the end of the world, that is very true. But I reckon I need to focus on some of my more lasting issues now in between counting my blessings if I want to get to grips with them. When a biologic is working (I think Humira still is, but nothing's written in stone) then I guess the pain, stiffness and functional difficulties that remain / worsen are likely to be the ones we need to adapt to over time.
All this makes me feel old. Let's throw a party. Oh blast, you're on the other side of the world.
Grandma J said:
Here I am again, but totally exhausted from working all day and needing more sleep. I just wanted to comment and ask how you're doing now, Sybil? It's been a couple days and I'm hoping the flare you were having has subsided (I wanted to say "flair" but that wouldn't be funny--if you're still not feeling well!).
I wasn't sure if you had already moved, but I see that's still in the future. I'm sure the stress around just thinking about that is not making things any better. At least for me, moving would be stressful, and I notice off and on when I worry and get anxious my hands will ache, stomach hurts, back gets stiff, etc., etc.
Did you get the injection? I know you're not too quick to take the pain pills--we're alike that way, although more often now I take an ibuprofen. I guess one won't hurt.
You asked what we think of our PsA. I think my PsA has caused me lots of anxiety. And, it's weird because I think I've gotten very accustomed to having some degree of pain all the time and luckily I can still walk and do most things, just at a slower pace. But, the slower pace annoys me. The fear of the unknown is really stressful. Before I had PsA I never worried about my health, really. Worry was temporary. Now my health is on my mind almost all the time because PsA unfortunately isn't temporary, and biologics stop working and joint damage continues, if at a slower pace. My feet and back worry me--my back especially, because if that fully goes out I lose my independence, not to mention endure horrible pain. My PsA is a reminder that I'm fragile *ugh* and not totally in control of things, despite taking the injections and being careful--nothing's a sure thing. PsA has been a real eye-opener for me.
With all that said, and I've said this before, there are so many terrible diseases my PsA doesn't even come close to. When I'm having more pain than usual and feeling sorry for myself I need to remember that, stay in the moment and not worry about the future.
Please remember you’re moving house Sybil. That’s the most stressful thing pretty much other than bereavement. That causes untold stress and worry and anxiety. You’re dealing with something whose root is psoriasis. Psoriasis thrives on stress, worry and anxiety. Indeed I firmly believe it can’t survive without those things, although it can come into being without any of them… So stop being so hard on yourself. Stages pass, get better or at least feel better. You WILL have a nicer times. It will again feel far more positive than right now. Again.
And please show us your paintings. Or at least describe them. I love art but have a meagre talent! Incidentally did the ridiculous sounding sleeping with a bar of soap help the cramping? It truly has for me. Changed the bar of soap for a new one this week and ramped up the relief again. I feel a complete idiot sleeping with a bar of soap in my bed but it certainly works for me.
Hope tomorrow is a truly good day for you.
Sybil said:
I so often think that the disease affects you & I in similar ways. I can relate to so many things you say here, I really can.
I’m not sure how to discuss the pain thing, that was about 36 hours of hell and I’m okay now but it hasn’t gone, it’s just lesser. Lately there have been a few times when I’ve felt overwhelmed and I need to get an angle on things over time. I’m kicking myself for not discussing all this more with my rheumy, it’s a combo of denial and stupidity.
My back is stiff a lot of the time and I have applied dollops of denial. I realise I’ve been looking at different ways of doing certain tasks, or avoiding them, without acknowledging to myself why that is necessary. I honestly think that different individuals have their own way of handling all this and even denial has its uses … up to a point. I want to do a big tall painting & have been thinking about doing it in sections and whether it’d be better to lay paper out on the floor, awkward getting down and up again but worth a try. The reason I didn’t ask myself why that was necessary was because, as you say, none of this is likely to be temporary and I didn’t want to go there.
PsA is not the end of the world, that is very true. But I reckon I need to focus on some of my more lasting issues now in between counting my blessings if I want to get to grips with them. When a biologic is working (I think Humira still is, but nothing’s written in stone) then I guess the pain, stiffness and functional difficulties that remain / worsen are likely to be the ones we need to adapt to over time.
All this makes me feel old. Let’s throw a party. Oh blast, you’re on the other side of the world.
Grandma J said:
Here I am again, but totally exhausted from working all day and needing more sleep. I just wanted to comment and ask how you’re doing now, Sybil? It’s been a couple days and I’m hoping the flare you were having has subsided (I wanted to say “flair” but that wouldn’t be funny–if you’re still not feeling well!).
I wasn’t sure if you had already moved, but I see that’s still in the future. I’m sure the stress around just thinking about that is not making things any better. At least for me, moving would be stressful, and I notice off and on when I worry and get anxious my hands will ache, stomach hurts, back gets stiff, etc., etc.
Did you get the injection? I know you’re not too quick to take the pain pills–we’re alike that way, although more often now I take an ibuprofen. I guess one won’t hurt.
You asked what we think of our PsA. I think my PsA has caused me lots of anxiety. And, it’s weird because I think I’ve gotten very accustomed to having some degree of pain all the time and luckily I can still walk and do most things, just at a slower pace. But, the slower pace annoys me. The fear of the unknown is really stressful. Before I had PsA I never worried about my health, really. Worry was temporary. Now my health is on my mind almost all the time because PsA unfortunately isn’t temporary, and biologics stop working and joint damage continues, if at a slower pace. My feet and back worry me–my back especially, because if that fully goes out I lose my independence, not to mention endure horrible pain. My PsA is a reminder that I’m fragile ugh and not totally in control of things, despite taking the injections and being careful–nothing’s a sure thing. PsA has been a real eye-opener for me.
With all that said, and I’ve said this before, there are so many terrible diseases my PsA doesn’t even come close to. When I’m having more pain than usual and feeling sorry for myself I need to remember that, stay in the moment and not worry about the future.
I have to try that bar of soap thing!!!!! And, Sybil, I really would love that party!!! I don't drink but most people think I'm feeling my oats when it's party time! You NEED to come to Minnesota! I know I'd love the U.K., but I don't have the guts to go that far from home!
About the large painting--I think that position would be stressful on your knees, hips and back, no? If you're planning on doing it in sections, wouldn't it be more comfortable to stand at an easel? My back is so screwed up, I'm probably just thinking of how I'd feel working in a kneeling/stooping position.
Poo therapy, her artwork is dang good. She's got tons of talent!
What??!! Oh no, I am aren't I! You've just ruined my whole weekend! ;)
That's a kind & wise reply Poo therapy, thank you! I don't know if I'm being that hard on myself mind but I take your point. I've had very little pain for yonks so if I am going to get 'stages' I'll have to get accustomed to them.
I haven't tried the soap yet and I haven't had much cramp either. That might be 'cos I'm drinking even more water than usual, it's so muggy here. But I am going to try it, it's intriguing!
Oh and welcome to the artist's quarter. You really should see Grandma J's work, it's amazing.
I agree with you in principle about working on the floor but I just wonder if it's awkward / stressful partly because we're not used to it? I think experimentation is required! I reckon I'd need knee pads though, the kind people wear for gardening. Standing for any length of time is quite tough, I find.
Grandma J said:
I have to try that bar of soap thing!!!!! And, Sybil, I really would love that party!!! I don't drink but most people think I'm feeling my oats when it's party time! You NEED to come to Minnesota! I know I'd love the U.K., but I don't have the guts to go that far from home!
About the large painting--I think that position would be stressful on your knees, hips and back, no? If you're planning on doing it in sections, wouldn't it be more comfortable to stand at an easel? My back is so screwed up, I'm probably just thinking of how I'd feel working in a kneeling/stooping position.
Poo therapy, her artwork is dang good. She's got tons of talent!
POO, Sybil and GrandmaJ are BOTH very talented artists, and they do beautiful work. I wonder ... if I set up a group called "ARTISTS' GALLERY", would they post pictures of their work? Maybe I'll just try that.
That's very nice of you but don't shame me! I've been doing the same painting of a Birmingham street scene for 5 months! And it was only meant to be a quick practice piece. In my head, of course, there are fantastic paintings, I think that is where they will stay. The one I'm trying to get around to if I only I could flaming well focus already has a title: 'the little house on the prairie and death'. I think it just might be inspired by the joyous experience of attempting to move home.