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Living with Psoriatic Arthritis (PsA)

Third attempt at an update


#1

I completely stopped working about 2 weeks before Christmas… I was so afraid I would crack and do something insane that would get me locked up… I was terrified of me doing something and then cops being involved etc because I had no idea how I could possibly cope…

I had a meeting at work with reintegration and my supervisor and all I did was cry hysterically and tell them I didn’t know anymore but that I couldn’t work now… Then I had a meeting with the work doctor and was completely insane… at one point he yelled at me to calm down (why do men think that will do anything but make it worse?) And I told him I can’t that’s what I’ve been telling you the whole time!! And then I told me all I had to do was lose weight and go for walks… Asshole…

I did the complete opposite from the 29th of December (that last meeting) until now… I did nothing but sit on the couch and play games… and that worked… last week I suddenly felt like going grocery shopping which I did and was exhausted after and completely overwhelmed during… but I did it…

My bf told my sister over Christmas that it was as bad as it was… She told my mom and my dad… my dad and his gf came over to my house and suggested to come with me to my primary care doctor so we could ask her to be my coach (I just typed couch and was actually laughing out loud in the train at that mental picture :rofl:)

Which he did and she seems willing to help… she’s going to check with the surgeon who adviced me not to remove my gallbladder, why he did that… because he apparently never send her a letter about that… She told me to take 0,5mg of melatonin so I could sleep during night hours… And she’s going to ask my psychologist why she’s not advising me to go on meds for my anxiety and panic attacks… and that’s just the 3 things I mentioned…

She’s going to call me this week and then we’ll make regular appointments to see how it goes and how she can help me…

I installed an app on Sunday that blocks all games and social media (officially a forum like this and messengers are social too but I don’t use them to zombie out so I didn’t block those) during day and night time… technically I’m still looking at a screen all day but it’s my e-reader and reading makes me feel much more like a functional human being :slight_smile:

I am definitely addicted to all the apps on my phone… but it’s not a craving like you crave nicotine it’s more like the automation of lighting a sigaret… I’m not annoyed when the popup says “this app is blocked” which is much more then I anticipated :smile:

I’m on my way to my parents town… I’m meeting my mom and have dinner with her and my sister and then I’ll be at my dad’s until Saturday. They are both working during the day but it should be nice to have people to talk to who actually want to talk about the news and won’t use everything I say to start a lecture on how all I need to do is lose weight and clean the house…

Since I was feeling better and wasn’t a zombie I did clean a bit and even folded laundry! Haha I did do a little bit too much today though… and my backpack is way too heavy… but my dad will drive me home on Saturday so it’s just from the train into the car now…

Oh! And I make myself tea! I feel like such an adult when I do that :rofl::rofl: I don’t even really like tea… but since it makes me feel better I bought 9 (3 for the price of 2…) new tastes to try :see_no_evil::hear_no_evil::speak_no_evil:

I have no idea how much it takes now to push me off the railing… (is that the saying? It sounds weird now I wrote it down…) and I am careful to not overdo it! Because it does feel like it’s right below the surface… (I started yelling at my phone a few days ago for something stupid)

Anyway… seems like feeling better doesn’t help with how many words I use :grin::stuck_out_tongue_closed_eyes:

But thank you everyone who replied to my other thread!! I really needed that outlet… and it might be needed again in the future… so thanks! :kissing_heart::hugs:


#2

Cynthia, when I first started reading this it sounded like you were at your wits end, but as you wrote more I noticed your sense of humor showing through “the couch instead of coach” that would make me LOL too—autocorrect is hilarious most of the time!!! (Well, sometimes it’s just totally frustrating, so I shouldn’t say most of the time!)

But, also I wanted to sy what a mean remark:
"Cynthia:
And then told me all I had to do was lose weight and go for walks… Asshole”

Really??? Ugh! So insensitive and not trying to get to the root of the problem.

One of my daughters struggles with depression—sometimes I think she’s a little bipolar. I think she could have thyroid problems too—her thyroid has been enlarged forever but her labs are normal—but her doctors always shrug her off…if she says she’s depressed they just tell her to increase her Sertraline. She gets so frustrated…she has a physical next week and I told her to write down everything and stress that they need to get to the bottom of what’s wrong. Oh, and she’s always achy, her hips hurt, she sleeps all the time except when she’s working or doing something fun…

I know just from her how awful depression is and how difficult it is to get anyone to listen to you and understand!!!

I hope things go better being with your mom and dad and having people around who listen!


#3

I was writing about when I was at my wit’s end so I get what you mean :slight_smile:

That’s what I hate about doctors too… as soon as you have one label they don’t look further… that’s why I really like this coach idea my dad had… his girlfriend always had this doctor that is chronically ill herself so provides care like that for all her patients (she has a lot less patients then normal doctors too)

For me a doctor was a grumpy old guy who told you to wait and see and come back in a month if 8ts still bothering you… After you told him it was there for 2 months already… So then I went after 3 and then 4…

I really hope my doctor will do what she seemed like she was saying she would…


#4

Hi there Cynthia… I’m soo pleased to hear you are starting to feel a bit better now… it’s amazing how some support and feeling like you are really being heard can make such a difference!!!

It’s great that your family are rallying around you to give you that support now!! Although I have to say it’s a shame that it needs to get to the point where you need to take a support person with you to a doctor before the doctor will sit up and start taking action your part… unfortunately this is all too common these days… It’s great that it is working for you though!!!

I was getting really worried for you there for a while, so am really pleased to hear you have been able to step back from your wit’s end for the moment :slight_smile: and I really do hope this is the start for you getting back on top of things again… it sounds like you are on your way now to getting some real help and some genuine improvement in your health, great news!!

As for the coach/couch thing… I’m sure there are times when you’d sure like to use your doctor as a couch… I have visions of you sitting on her until she hears what you are saying :laughing:

Having had that good break from work sounds like it has been good for you too… a good rest can sometimes be enough to help too, please don’t allow yourself to feel guilty for not doing things, sometimes a rest is absolutely necessary to allow the body to heal a little.

Keeping fingers crossed for you that 2018 will be the start of many GOOD years ahead for you!! :crossed_fingers::crossed_fingers:


#5

Thank you so much! I’ll try not to feel guilty… that is really hard… but I try to remind myself if I stayed home when I should have stayed home I wouldn’t be in such a mess now… And that those assholes kept telling me that going to work was the best thing to do in my situation were completely wrong… (I really hope they won’t pin it on me because I don’t know if I can keep myself from buying their head off)

There’s a cake by my name… have I really only been here for 1 year?! Wow… it feels like I’ve been here for years! (In a good way)


#6

I’m loving this new thread Cynthia, just so loving it. Well done you. Seriously. Just wow!
And I’m so so glad for you. Massive hugs. Masses and masses of massive hugs!


#7

So… after weeks of doing nothing I was pretty close to pain free when I started feeling better in my head too… and then I went to stay with my dad for a few days and moved around a bit more… Then I came home and reorganized 2 drawers in which I overdid it and when I noticed I still had everything laying everywhere… So no wonder I hurt… And then the stress of having to go to a meeting with reintegration at work… including the commute yesterday… No wonder I’m in pain… Right?

My toes hurt… they feel like my socks are way too tight and crushing them… they hurt to slightly touch… but it’s not a 7-8 at it’s max is more like 4-5… my thumb is inflamed again… (oh right I did some crochet too) that one does hurt when I use it normally… And everything else is being bothersome too…

I’m taking it slow now to see if it gets better… but I’m going to my bfs sister from Friday to Sunday… she has a mattress on the floor and we’re going to be sorting through a truckload of hobby stuff… which is going to be fun of course! And being around my 3 yr old nephew for a few days will be great too… but I can definitely expect to hurt more after that too…

But I’m supposed to be watching my body to see if my PsA is getting worse now that I’m off meds… it’s only been a month since I was supposed to take my next Stelara shot…

I know for sure right now I’m overreacting to the way I feel now… pain is so much worse if it’s been gone for a little while… But it feels exactly the same as before when I kept on making new excuses for the pain to get worse and worse… How am I supposed to know what’s Okey and what’s bad enough to call my reumatologist?..

Turns out my dad’s gf has the"flu" now (I don’t think throwing up and diarrhea is the flu right?) And I drank my tea to quickly right before she told me… so I already felt I bit queasy and then my stomach is making sounds so I’m sure I’ll be sick…

And actually I’m pretty sure I won’t be sick just like I’m sure it’s not the PsA acting up it’s just doing too much… but then there’s this voice in my head saying “but you can’t be sure!”


#8

Might be the stomach/gastric flu. Stay away. Stay far, far away. :poop:


#9

That is about the worst thing to hear, someone next to you suddenly telling you they’ve just been throwing up and having explosive diarrhea for three days straight! It always gets my stomach churning–luckily, I never catch that stuff!!! (For never catching it, I sure worry enough about catching it when people around me have it! It was torture for me taking care of my kids when they had it!)


#10

When my body makes me feel sick when I’m not sick how am I supposed to trust anything it tells me?..


#11

I can deal with poo. Obviously from the name I choose which incidentally was all about being a volunteer on a farm that’s run by and for people with learning disabilities so I volunteered to muck out farm animals. However put me near anyone or any animal vomiting or worse still expecting me to clean it up and I’m retching too and sweating and feeling utterly overwhelmed momentarily. So that is just my body and mind making me sick when I’m actually not sick.

You’re off meds Cynthia, you doing more stuff in bursts, and bits of you are painful. Let’s just look at that bit. I think that’s worthy of just telling your rheumatologist anyway. Let him or decide. Put it another for this disease anyway, it’s worthy of reporting, surely?