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Living with Psoriatic Arthritis (PsA)

Another probably lengthy rant from me


#21

It has so be tiny… I can’t find it… I’ve been cutting out parts of “me” that isn’t “me”… but nothing seems to be left so it must be microscopically small… Lol


#22

This app and my browser can’t work together… I can’t even switch between this app and WhatsApp or something without it crashing… Could you write the link with (dot) instead of . ?


#23

Don’t apologize for reacting late! You’re amazing and always here you shouldn’t feel bad for not being here even more!

Thank you guys so much for the replies!

I feel like there’s part of my head that speaks a language I don’t understand… And when it takes over I just can’t make sense of anything… Brain fog is part of it… I’m not sure where I was going with this…

I don’t know how to be nice to myself… I buy things to feel better… so I stop myself from buying things (since it’s nice to have some savings…) But then I’m stuck with never buying anything… (Except trash from AliExpress) i eat when I don’t feel well… So I (try to) deny myself buying food… but I end up eating cheap crap anyway… I really truly hate exersice (why won’t the fucking stupid autocorrect tell me how to write that stupid fucking word!!! What’s the fucking point if THAT isn’t close enough!!! And why put the stupid red line under it telling me I’m a fucking idiot when you can’t even tell me how I’m supposed to write it!!! I fucking tried all the X c s z options…)

So being nice to myself is just not doing it right?!.. Not making myself hate being alive even more wanting to scream in the faces of everyone who says it’s fun and you get energy and good feeling hormones to go fuck themselves!!!

How am I supposed to be nice to someone who can’t even write a post without yelling and getting angry!!! I hate that person and I want to kill her!! That’s who I am… Nothing else just a horrible hateful person who can only for a very little while make people think she’s actually nice…


#24

Well you could re-write it. You are rather nice usually. Well, ‘nice’ is a bit of an insipid word, but there’s loads of good things about you, that’s just obvious to me & to many of us I’d assume.

You sound absolutely furious with yourself … and with the autocorrect. I get it, just about, I think. I’m trying.

I think exercise helps but what you suggest I therefore do with myself is physically impossible. I’m not taking offence 'cos, like I say, I do know what it’s like to be in a state of barely contained rage. And anyway, the way I read your post the key bit that relates to those of us who have replied to you so far is the first 2 paragraphs.

We can’t solve anything here. We can only try to understand as best we can and be here for you. We’re on your side. There will be plenty of others who are hurting too, you may not know the half of it but I reckon many of us have had or do have our own private hells. You do need the support you’re waiting for, I so hope you don’t have to wait long as that must be incredibly frustrating for you. But meanwhile, be a bit nice to us here if you can’t be nice to yourself, please Cynthia. Oh my, how I wish I had a magic wand to just wave away your troubles.


#25

That’s what I mean… I get angry at myself and suddenly everyone thinks I’m angry at then… I should just crawl in a ditch cut my arms open and hope I don’t bleed on anything that belowlngs to anyone else!


#26

Every single time I manage to not hurt myself and try to let the anger out any other way I regret it waaaaay more then just biting… People stopped asking where the bruises come from so that’s not a problem anymore…


#27

So you saw the psychologist from the rehab programme on 10th November, right? I’m just trying to work out how long you may have to wait. From what you say it could / should be less than 2 weeks from now. This psychologist is the first person you’ve mentioned who you’ve had some confidence in and whose approach seems to have taken the edge off your pain.

I don’t think you’re angry with me or the general ‘us’ but I’m sure you wouldn’t want to offend your friends here even if it helps with the anger. You are amongst friends and the thing is, you’ve earned this online friendship. You so often encourage, congratulate and commiserate with other people and sometimes you just come up with some interesting comment that nobody else would think of!


#28

www.pushingbeauty(dot)com ??? 11 Ways to be Kind to Yourself


#29

There’s loads going on here isn’t there Cynthia? I do get that, really. I can’t help with any of it as I am just like us all, reading what you’re writing and so wishing I and any of us could just properly help. We can’t though, can we? We can just post these messages to you and hope they comfort you just somehow.

But let me tell you how you’ve made me feel these last 18 months or so. You’ve been incisive, beautifully razor sharp sometimes and just hugely warm. Utterly just hugely warm, always. You’ve made me laugh when I needed to and made me cry also when I needed to and both when I wasn’t in the humour for either.

I like you. I like what you say and how you react to others problems. Despite your present loathing of yourself, when you’re not bothered about just that, you and what you say on here resonates beyond any of that in such a positive way. I’m guessing you just now think I’m just talking a load of rubbish. But I know I’m not.

I could wax lyrical about my own issues, cite examples of those issues that I might think might just be similar enough in the hope I made a chink that helped you. But that doesn’t help either does it?

But just know this. I like you. You’re important to me and I’m so utterly sad you’re presently feeling like you are. That’s not said to make you feel bad or guilty but Cynthia even when you exhibit what you believe is the very worst of you - the simply awfully enraged bit of Cynthia - those that have had the privilege of the rest of you, like me, do so very truly care about all of you.

So if we and just me, can care about the whole of you, so can you. Yes really. Utterly off beam but here’s a suggeston. Rescue a pet - a dog, or cat, or hamster or whatever it is, just rescue it. Just do it. Any of them just teach us so much about having to bugger on day by day. They also simply live in the here and now, the present. That last bit is the most valuable thing all of us could ever learn.

Massive hugs. xxx


#30

Cynthia, I am a clinical psychologist with 30 years experience, I work in Rheumatology in a major academic center, (and I am also a person with PSA.)

This is not OK, and you deserve support. I am glad you were honest in the questionnaire and with us about how you are feeling. At least 1 in 3 people with PSA will have at least one episode of serious depression. Depression and PSA activate similar pathways in the body and brain. Some PSA medications help with depression, and some actually cause it or worsen it. And yes, like most things, these feelings will be more or less intense throughout the day and from day to day.

If you indicated you were feeling suicidal on the form, (and even if you didn’t but indicated you were experiencing high levels of symptoms the questionnaire asks about), there is a protocol that all psychologists must follow. Call the program right now please and if you can, ask to speak to someone you know and trusttrust, a nurse, a doctor. (Even on the weekend there should be people on call to take messages and help with an urgent issue. And yes, this is the most urgent that can come up, and is more common than you might imagine.) Explain what happened. You need to be seen right away, and you must be properly assessed. You definitely cannot wait 3 weeks until the psychologist is back. (We all have to make sure we have coverage from another psychologist when we are away.) Your rehab team will know what to do; your rheumatologist must also be made aware of how you feel right away, and he/she also knows what to do. However, please understand that almost all team members generally rely on the psychologist to alert them when someone feels the way you feel right now.

Realitically, you probably won’t be seen today given it is the weekend. If calling the program today feels too overwhelming and you do not feel you can keep yourself safe over the next 24 hours, then go to the ED right now and tell them what has happened. If you do feel certain you will not act on these feelings in the next 24 hours, it would still be good to have supportive people around you (if you live alone).

Often people feel a bit better once they have acknowledged how badly they feel to others. You might be feeling a bit better. However, that does not take away from the seriousness of the situation you are currently in. I urge you to not wait, but to call your program now and let them know you have had suicidal feelings, and indicated this on the form, but there was no specific discussion about this with the psychologist. If there is no answer, call the emergency department of the affiliated hosputal, ask to speak with the psychiatrist on call, and explain what has happened. They will be able to tell you what to do next.

But do not wait. You deserve support and help, we can definately help you at this difficult time, and every program has to have procedures in place to deal with someone who feels the way you feel right now.

I am very sorry you have fallen through the cracks but it does happen, unfortunately. But every health professional I know would very much want you to let your team know what has happened, and reach out again so we can help you.

This is not your fault. There are things that can be done right away to help you. Please call and let them help you.

I hope you feel better soon. PSA is a big enough burden to live with. Depression is treatable. We have many many effective ways to treat it, and drugs are only one of many options with proven efficacy.


#31

Nothing changed in between before and now… One of my friends has been trying to get emergency help because she’s suicidal for months… She’s on the waiting list for high emergency cases… When you’re 100% sure you’ll kill yourself if they leave you alone you get put on a waiting list for months… If you then take your meds for the month all at once, pass out, have a seissure, broken rib and toe and really bruised you’re send home within 24 hours…

If they ask me if I’ll actually try to kill myself in the next few months I’m 80% sure I won’t… That’s good enough… they can’t do anything anyway… I know they all want to help me… but there’s not enough money and resources…

But there’s nothing they can’t do anyway… If they talk to me I’ll feel a bit better… like today I just ignored everything (my muscles hurt a lot from tensing everything but yeah) and my head feels fine… So they send me home again for me to wait until 2 weeks when I start the rehabilitation which will start with 3!! Meetings to explain what was in that extremely condescending book I already read… So before anything happens it will be a month…

The first meeting is on the same day as my meeting with my psychologist so I need to move that… She’s probably really busy that week because of her break…


#32

Cynthia, look at the many things that have been said in the thirty-some posts on this thread. Aside from suggestions, and strategies, and logic, for me what I see boils down to this: people like you, feel enormous affection for you and care a great deal about what you are going through.

Please don’t say “Yeah, but you don’t really know me.” We’ve been here a long time, “met” a lot of people, and we’ve struggled with a lot of things similar to what you are trying to cope with. It’s a bitch, and we do understand how it can grind you down to the place that you are now. It’s not easy. Nothing about coping with this far-reaching disease and its hideous fallout is easy. And, unfortunately, the fallout spreads: it spreads to our relationships, our friends and our co-workers. Everyone. You know that. And we know that we like you anyway. Despite it all. Please stay with us, and do your best to continue to be our friend.


#33

I’ve sent an email to my psychologist saying I was afraid to leave the house because I was afraid I would kill myself she emailed back all light-hearted about other things in the email and said we’ll talk Wednesday (the appointment was moved from today to tomorrow) but now she’s sick… And the first available slot was Thursday in 2 weeks…

She can’t help being sick but it sure feels like the universe is trying to push me over the edge…

I keep getting rewarded with actual help if I have a rage panic attack and run away from telephone/receptionists at the reumatology center… It’s 100% impossible to help me until I freak out and then they call me with an even more fitting solution then necessary…


#34

Oh Cynthia, how miserable for you. You talk about your psychologist, but do you also have contact with a psychiatrist, or the possibility of contacting one? I know that you don’t live in Amsterdam, but there’s a service that you might be able to tap into here. Being afraid that you are going to kill yourself is an emergency. In your home town, there is also a psychiatric emergency service that can be accessed by a family doctor or the police.

Sometimes the only way of getting help is to shout that you are afraid of killing yourself. Shout good and loud. Call the experts. You deserve appropriate care.

There are people everywhere, including us here, who care about your welfare. Please think of them, and the emotional damage that your self harm would cause for them.


#35

More hugs Cynthia. Please do get the help you need. Seenie’s method might help just for now.


#36

But nothing is going to change in my situation in the short term… They can’t do anything…

I don’t understand that I have to be 100% aware of my problems and then tell the doctor what they are and who he needs to refer me too… and then I need to tell that specialist exactly what medication I want to take…


#37

Thinking of you Cynthia. You shouldn’t have to fight for help but if that’s what it takes, go for it.


#38

Hi Cynthia. I can say I’ve been very lucky not having depression–at least nothing deep or serious–in my life, and sadly I had a hard time understanding it. That is, until I had the sadness Crestor brought on me. Then there would be moments of deep sadness and tears, a feeling of hopelessness that I can’t even describe. It wasn’t until I had this happen to me that I realized it’s not anything that can be easily controlled! I know what I experienced wasn’t anything like what you’re going through–it was mild–but for me it was unbearable. I really felt if my doctor couldn’t figure out a way to fix it I wouldn’t be able to handle it much longer. Thankfully, being off the Crestor has made a huge difference.
I hope you can get some resolution to this awful illness you have and be able to enjoy life soon!


#39

Short term, no. But very few worthwhile things that we do in life are short term.

I don’t understand that I have to be 100% aware of my problems and then tell the doctor what they are and who he needs to refer me too… and then I need to tell that specialist exactly what medication I want to take…

Cynthia, many of us here have gone through something similar in trying to get a diagnosis and treatment for what turned out to be PsA. That’s physical (well, not really, but it has a smaller psychological component than what you are going through now) but similar in that we had to take a longer view, plod on, have hope, and repeatedly seek help (which often didn’t help), before we were able to find someone and something that changed the course of our misery.

Knock on those doors. Ask for help. Tell your story. It may take a while, but some day, with persistence, some bits and pieces will fall into place and you’ll be able to move forward again. Please do that for yourself, and for those who care about you.

Thinking of you Cynthia. You shouldn’t have to fight for help but if that’s what it takes, go for it.

I couldn’t have said that any better myself.


#40

(What Seenie said) and we’re behind you, it’s not enough, but it’s real.