TW: The 'real' me inside - I come with an SI warning

Thanks @tyme , that does make more sense than what the “community guidelines” currently say 😉 (bolded for emphasis on where I was reading).

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Limit Detailed Descriptions

Why do we have it?

To avoid triggering other members by steering clear of explicit content related to suicide, self-harm, trauma, abuse, eating disorders and medication.

What does it mean?

Talk about your experiences generally without going into specifics that might upset others, such as self-harm and suicide methods, traumatic or abusive episodes, eating disorder behaviours, medication names and dosages.

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Not sure if it might be useful to amend the explanation in the community guidelines to add in around the reasons you just gave which do make sense? 😊

I’ll figure out a way to discuss it in … very vague ways 😂

@Jynx @AuntGlow @Flutterbug9 @Till23 @Cuddlebear and anyone else interested in research on novel depression treatments...

Read two very interesting articles this evening about 'novel depression medication’ 😉 being highly effective for anhedonia - even though they don’t know why it works. This isn’t the one I am waiting on the trial for, but the next-in-line option my GP has also suggested but I didn’t know much about and had dismissed because I had the impression it would only be recommended for people with a severe “funk” depression, not my type of “functional but burnout and suicidal” depression 🤣.

One was looking at a study with mice and how they responded due to chronic exposure to the stress-hormone - and they show the expected stress responses like lack of interest in food and withdrawing socially (“anhedonic symptoms”). Then they administer the medication to them and test them after the medication is out of their system — and they still have sustained improvement (increased appetite to a normal level and socialisation behaviours again).

Meaning, that at least in mice, it shows strong benefits for stress-induced anhedonia.

This is kinda encouraging to me because it means it can work even if its not a “depression” per se!

Another case study I read on the same medication had a person with a 30 year history of high-functioning but with depression and suicidality (and subsequently finally diagnosed with autism after multiple hospitalisations) - again, similar chronic longevity and complicating factors to myself - who had a very good response to a course of the medication and also reduced their autistic traits that added to complications (although it is possible it could also have been due to the relief of depression, since some symptoms overlap - but either they their rigid autistic thinking and challenges with empathy were reduced too!). And it also cited a few other case studies where autistic people have reported some degree of increased cognitive flexibility, autistic thought patterns / automatic-thinking, and social interaction. Also the patient in the study had lasting effect even at the 6mth review mark - where as unfortunately a lot of TRD with this medication only have relief for short periods of time (days, or maybe a month) which means constant expensive treatment.

It stuns me that somehow it also improves their ability to cope from the aspects of autistic challenges. Although I do even with myself how autistic traits are so much harder and more impactful when I am stressed or depressed, so i can see how alleviating that stress/depression can also alleviate some of those autistic-stressors too which then enable masking without as much negative side-effect.

I wonder if in future years short-acting medications like this would be available within an Emergency Department for rapid relief of acute depression exacerbations, when there is an existing treatment-plan from a psychiatrist approving it? 🤔 I reckon that would be an amazing thing, and make it so much more affordable if the patient could present to the ED for administration of the medication -- because the reason it is so expensive is the psychiatry fees. The medication itself is on the PBS now (which amazed me!).

Food for thought!

I don’t like the idea of having to pay thousands of dollars per month for treatment for life. But if it can be effective for 6 months or longer after initial intensive (6-10 weeks of 2-3 times a week?) course, then maybe that is an option if the upcoming one doesn’t work well. 🤔

@Flutterbug9 Hello lovely how are you?

I’ve been thinking about you. How was croquet this week?

@AlwaysMyself @Chasingsunsets @Flutterbug9

How are you all doing? I hope you are doing well today.

I really appreciate you all being here. I know I’ve been all over the place so to speak. I’m trying to get on forums but I just freeze up and disassociate.

Im seeing GP this week for the mental health plan. My biggest hurdle is the gap payment. I have to choose between having access to a psychologist and being able to afford utilities. There’s no more I can cut from food it’s already at rock bottom. But I need a psychologist even for those few 10 visits. I’d have to go monthly despite needing weekly visits at the moment. It really hurts to be in this situation.

It’s really just bad that GP don’t read those medical reports. They are so important. They need to be on top of patient records because without that they make mistakes and that impacts in a big way on the patient. It is extremely difficult to find a good GP. Like many of you I have chrinic disease, mental illness and disabilities and you need a GP totally on top of that.

You’re exactly right Peoplw don’t go to ED without a really really good reason. I’ve only gone when I’ve been really sick so sick that ED was required rather than a GP. For example the dead part of my foot which resulted in instantly being admitted. Or when my I developed stage 4 hypertension with chest pain and head numbness. Paramedics came and took me to hospital.

My GP had no idea I’d been in hospital for 5 weeks and had bypass surgery and an amputation. He received all the paperwork and looked so surprised. I honestly couldn’t believe it. The hospital each time sent him discharge paperwork marked urgent for follow up treatment. Even with the bypass and foot he told me I was being overly anxious which frankly I wasn’t.

Please don’t feel you have to push yourself to be on the forums @Cuddlebear, unless you want to. I only log onto the forums when I can, completely no pattern of any type. There have already been, and may possibly happen into the future, where I read or acknowledge I’ve seen post/s and won’t get back to fully reading and/or responding 1 or more days later.

issues with GPs and specialists ….. where do I start.
years ago when my husband was diagnosed with terminal cancer the oncologist we saw told us if GPs had requested specific scans during to, up to, 10yrs prior that the cancer most likely would have been found in early stages. For years he was told his symptoms were due to x,y or z. Non of which were related to the actual cause.

when he started chemo, the dosage was too high which resulted in him having other health issues. Impact led to him “being brought back from the brink” (exact words from Dr in ED) plus left him susceptible to ongoing infections that resulted to him being in hospital for large period of the months he lived following diagnosis.

GP clinic I used to go to, at first I could always see the same GP, after me attending the clinic for years the clinic changed its guidelines and I was no longer to request to see one specific GP, unless it was booked in person after having seen a GP. After the Covid WFH precautions were relaxed the arrangement with the clinic never did. It became almost impossible to get appointment to see GP in person as majority of the GPs continued WFH.

whilst I was attending that clinic my blood test results were saying “neutropenia”. With each test result I was told I must have an infection and new blood test needed at next appointment. There was no follow up appointment booked or discussion about referral to specialist. Last couple yrs of being with that clinic blood test results showed “chronic neutropenia”, nothing was done.

about 2.5 yrs ago I moved address and transferred to current GP who works on their own. 12mths after seeing new GP and no change in blood test results I was finally referred to specialist who requested different blood tests plus bone marrow tap. Results said no known cause, one specific vitamin very, very low. Based on statement by GP not long after that, by now assessment should have been done if I am to continue on tablets or are to go onto needles. Nothing mentioned by GP last week and I forgot. Unless I remember to mention things, follow-up doesn’t happen.

last year I started having discussions with current GP about referral to new psychiatrist. My GP will not refer to psychiatrist that only do Telehealth and strongly prefers to only refer to any specialist that GP has a working knowledge about.

ive recently had to contact GPs rooms to chase up where Chronic Condition Mansgement Plan was. I had seen GP almost 1 week prior during which GP said plan would be emailed to me and to phone allied health provider listed on the plan after I receive it. Only way I’ve got a copy was getting it from the allied health provider at initial appointment with them.

looking at the information on the management plan it is missing all my medical history prior to when I transferred to current GP plus has incorrect info for meds Im currently taking. Person in their early 60’s who has no medical history prior to 18mths ago…. Uuummm?? Makes no sense to me.
One med listed is an antidepressant which I haven’t taken for more than 12mths. Few weeks ago I took list of all my current meds, that I had typed, to GP rooms and requested my records be updated, total waste of time. med that Haematologist approx 15mths ago said I need to take, and I know GP is aware of, isn’t listed.

due to my blood disorder I have to have regular 3 mthly blood test, GP insists I have F2F follow up appointment, I have no idea why. Next GP appointment in May, review on Management plan recorded as June.

appointment in May I’ll be taking the toiletry bag, in which I keep all my meds in, in hope my current meds details finally gets updated

no GP in my area currently taking new patients with couple of GPs having recently retired. To try to get a different GP is high chance I could end up at clinic I used to attend, not going there again. There is a GP clinic in shopping centre which is outside area I live in and is approx 30mins one way drive, if they were accepting new patients

there are some people where I live who drive up to 1hr one way to see GP they have seen for years, they can’t find GP in my area to accept their transfer request. It’s not good enough for anyone

@AlwaysMyself @Chasingsunsets

@Flutterbug9 @Cuddlebear @Chasingsunsets

Sending hugs.

I'm not sure if the shared experience is more helpful (knowing you're not alone, that its not you or your fault) or more hopeless (knowing how widespread the problem is). 🤗☹️ but i hope there is some even small comfort in knowing that its not your fault or because you are a "problem" or anything personal about you. All 3 of you are really lovely people with reasonable expectations who have been let down by the GPs/medical staff.

@Cuddlebear i found many psychologists will bulkbill if you are happy to choose one that are online telehealth. Some even specialise in trauma.

E.g. in case it helps lesson the load of trying to navigate websites and filters -- Psychology Today website with services for Melbourne (incl telehealth meaning Aus wide) that list Bulkbilling as payment, and list Trauma/ptsd as well as chronic illness in their treatment areas.

List currently has 10 results: https://www.psychologytoday.com/au/counselling/vic/melbourne?category=trauma-and-ptsd&filters=4553,2437,4936

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@AlwaysMyself wrote:

Thanks @tyme , that does make more sense than what the “community guidelines” currently say 😉 (bolded for emphasis on where I was reading).

---

Limit Detailed Descriptions

Why do we have it?

To avoid triggering other members by steering clear of explicit content related to suicide, self-harm, trauma, abuse, eating disorders and medication.

What does it mean?

Talk about your experiences generally without going into specifics that might upset others, such as self-harm and suicide methods, traumatic or abusive episodes, eating disorder behaviours, medication names and dosages.

---

Not sure if it might be useful to amend the explanation in the community guidelines to add in around the reasons you just gave which do make sense? 😊

I’ll figure out a way to discuss it in … very vague ways 😂

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That's a really good point. Can you email the above to team@saneforums.org so that it can be used as part of our guideline review?

I see it from both sides. We used to have a detailed explanation around why we can't name meds but the guidelines got longer and longer and longer... then it was like a massive doc that no body could really read and comprehend... if you know what I mean.

But I totally agree with you. @AlwaysMyself

@AlwaysMyself Hello lovely how are you going? What have you been upto?

I think the shared experience is validating because we can see a pattern with how the GP’s are.

Thank you for the link. I’ll take a look and make some inquiries.

I’ve been really having such a hard time. I’m particularly unwell today. I am in constant panic and need my forum friends. I’m panicked and frozen all at once. So much fear and dread.

Good morning @Cuddlebear

Thank you for sharing with us and telling the community what you need. WE are here for you 😘

I'm sorry to read that you are having a hard day today. The frozen panic feels can be so intense and overwhelming I know. It is really good that you have been able to express yourself and come here to ask for support. I'm sure there will be others in the community who will be able to relate and who will jump in to offer support.

You're not alone, ok? We're right here with you. Sending virtual hugs and all my best your way.

I hope you can find some glimmers in your day.

💟

@Flutterbug9 Hello lovely how are you?

I can totally understand the problems with the GP. It’s just tragic that the GP didn’t pick up on your husbands cancer. And the oncologist saying it was just some early easy tests thet could have gotten in early. That’s devastating. Even worse thwt they gave him too much chemo resulting in permanent heakth problems. Honestly I’m so sorry.

Doing no follow up after those blood test results is criminal. 😞 Have these been followed up?

I have the same issue with my GP regarding meds and my conditions. I’ve asked him repeatedly to fix it up it took so long. Finally just this year he got it right.

It’s a good idea to take your medicines in and get the right information in the system. Plus getting your chronic management plan.

I want to be on forums. I really need it and I’m struggling so much. Having the peers here like you helps so much.

My day is awful today with really heavy symptoms. It’s been relentless.