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Living with Psoriatic Arthritis (PsA)

Another probably lengthy rant from me


#61

I’ll try that… Thank you


#62

Good Luck today!!!


#63

THIS IS REALLY GREAT ADVICE!!!


#64

The psychologist from the rehab contacted me and wanted to talk… I send an email to my coach that got her worried she’s going to (with everyone from rehab and my “normal” psychologist) find me a place with help that matches my situation… I’m seeing my psych tomorrow and the rehab psych on Thursday… And I don’t know after that… I’m so incredibly tired… Not “our” exhausted but really really tired… I’ve cried more then I had dry eyes today…


#65

Sounds like progress at long last… this has to be a good thing!!! I’m so pleased to hear that you are being taken seriously now. When talking to the psychs please be honest with them, do not sugar coat anything, show them the whole picture of how all of this is affecting you.
It looks like now you are on the right path to getting started on that help you so desperately need… I wish you speedy recovery!!! Big hugs!!


#66

Gosh @Cynthia, I missed all this as I was in London. I’m so sorry. But wow @janson what just fabulous advice. I truly hope from the very bottom of my heart that finally @Cynthia, help is now at hand for you. Dry eyes today tells me you’re feeling just a little safer. I so hope that’s the case. Massive hugs to you, just massive hugs. And yes please just do tell the psychs it all, warts, knobs and every single little bit. There’s simply no reason not to - at all. x


#67

The psych from rehab thinks I dissociate… Because I don’t notice I’m putting on a show because I’m actually feeling better and forgot how bad things really get… (That’s what happens when I’m at the doctor too… I actually feel less pain and forget about how it was before) So at that moment I’m completely honest for the best of my knowledge… But it’s not how it really is… I’m not sure what my other psych was thinking because all she does is make me doubt that the world is really round… (“what makes you think that” in my mind translates to “what a silly thing to think”) she never says what she thinks causes things other then it’s all the fault of my pain…

I did tell her I forget how bad things are when I’m with her…

Don’t apologize for having fun! At least I hope London was fun! hug

I’ve slept for 5 hours woke up at 11 and now it’s 2 in the morning… I’m not tired enough anymore to pass out without getting stuck in my head unable to sleep…


#68

It’s good that your psych points out unhelpful thought patterns but they may not be abnormal. Well anyway, whether abnormal or normal … I do this all the time too. Sometimes after some encounter or other I wonder … ‘who the hell was I?’ (Possibly not so normal lol!).

But just knowing we do these things is a start & can really help with things like rheumy appointments.

Good luck at your appointment, thinking of you,

Sybil


#69

London was not fun. It isn’t presently and hasn’t been for some time. But that’s another story.

I get the dissasociative bit. I do that lots, far too lots. Just like Sybil described, so just like. All of me runs with it and then ends up so suprised, I’ve then tripped up and fallen down hard. Very hard sometimes too. The ego part of me wonders why on earth I do that. The rest of me believes my ego will always try its best. Silly ego, frankly. So just think on this, please. As well as the dissasocitating bit, I’m hard wired to ensure everyone around me thinks I’m just so fine. Just absolutely fine. Lots of times I’m certainly not. At all.

But @Cynthia from what you’re now writing, it seems like others are starting to ‘hear’ you. As regards other’s questions - they’re not judging you, they are simply trying to ‘hear’ what you need to tell them, so just tell them. Just tell them. However horrible, just tell them… All of it.

More hugs, masses of them. Why don’t you just print out what you’ve written here and all our responses too and just let them read all of it? That sometimes is easier than trying to explain yet again. x


#70

Sorry about London… to me London is where you go on vacation to do fun things… I forgot it can be like me being on my way to Amsterdam now to tell my supervisor and reintegration person that I’m too crazy to work at the moment…

I’ve had trouble talking and forming sentences… finding words all week… And somehow now I feel completely clear… I’m hardly in pain… I feel like I’m a fraud because I feel fine right now… Even though I know it’s only the moment and the added adrenaline is giving me the clarity…


#71

It’s great you are feeling good right now… I understand how you fear it probably won’t last though… it’s hard… I know… how are you getting on with your treatments and the docs? It would be nice to think that some of that is helping… even if just a little bit.


#72

He stopped the Stelara since it’s not doing much… And we’re not starting something new now… since he thinks it’s mostly just the fibromyalgia giving me trouble now… I agree but now I think that means Stelara shouldn’t be stopped maybe? Since if it stopped the PsA stuff then it’s working…

I’ve gone from feeling Okey to full on panic attack trying really hard to breath normally… The meeting starts in 5 seconds but they are allowed to be late and it’s normal apparently…


#73

Best of luck with your meeting today!!! Waiting for those things is always stressful :frowning:
I guess only time will tell if going off the Stelara will make any difference… Hmmm… sorry you are back on the wait and see thing… I really do hope you can get some relief soon!!! It really is no wonder you have trouble coping with all of this… I think anyone would… hang in there and do the best you can for you!!!


#74

Thanks :slight_smile:


#75

My supervisor is “already” here and is staring at me… Sigh… she started writing stuff right after she didn’t like the way I said good morning… She’s constantly making sure she remembers all the bad things people do…


#76

So I went with full break down… I don’t remember what I said but they’re leaving me alone until half January… Although I have to go to the company doctor on the 29th… but I already knew that…

I’m so tired… On to my psychologist… I just want to sleep… it’s gonna take so incredibly long before I can even start with whatever they have planned for me… it will just be another disappointment in January…


#77

Yes, I’d be thinking that way too. Hmmm, a bit puzzling.

But the meeting … I’m getting that things are moving forward, there seems to be progress … painful, exhausting progress, more like an obstacle course but progress nonetheless. Wow Cynthia, you’re going some at the moment, tackling some really difficult things!


#78

Massive more hugs though Cynthia. It does sound like though you’re moving forward and climbing over those obstacles. Remember, the only way to eat an elephant metaphorically, is just one bite at a time. We all sadly have metaphorical elephants, relatively, to eat sometimes and even more frustratingly it can only be one bite at a time. Keep plodding on sweetheart. And know we’re all walking with you. We are, you know, we’re just here. Always. x

P.S. Incidentally I just adore elephants and wouldn’t dream of ‘eating’ any of them. But they’re huge, graceful, wise, stoic and just imbibed with such a timeless ancientness, so they seemed a good metaphor to use. Hugs x


#79

Awww… it’s a shame it takes going the “full break down” thing before anyone will listen… it really sucks that that becomes necessary… but all too often it does.

At least it sounds like you don’t have to worry too much about the work side of things, just for now (unless I have misunderstood), and that could prove to be a good thing… the added stress of that worry can’t be helping any.

It’s frustrating and infuriating that everything takes so long (unfortunately it’s like that here in NZ too)… the waiting doesn’t help anyone.

It is now time to try to take a bit of a step back from all the stress and focus on having as relaxing a Christmas break as you can… do have a safe and happy one… and hopefully a pain reduced one too!!! Will be thinking of you!!!


#80

Thanks you guys! I do feel a lot more calm now that all that is so far away again… (feels much longer since it’s after Christmas and New year’s haha) right now all I worry about is how I’m going to survive 26th of December with 9 adults and 4 little kids… Lol