Lived Experience Forum

[Jynx]

Hey all, just making a thread for our new member @D1ng0 - they're feeling pretty isolated at the moment so hopefully this can be a good chance for them to connect with some lovely forumites and maybe get some ideas - they mentioned looking for ideas to cope when things start to pile up! 

@D1ng0 just wondering if there's something in particular that is proving to be the biggest struggle for you right now. Like is it one of your diagnoses playing havoc, or struggling with the basics, or maybe finding it challenging to get out and about? 

You can of course share as much or as little as you like hun, we're here to listen and sit beside you through the rough stuff 💜

[Miss-wish]

Hi @D1ng0,

I read your welcome post and it sounds like you have a lot going on at the moment? I'm here to chat about anything you would like, if and when you are ready. 

[D1ng0]

Hey Jynx, thank you for your support. I use he/him/his.

Today I had an appointment with my psychologist, and separately with a dietician who has assessed me to have anorexia, so it was a very overwhelming/draining day. I then had a phone call with a family member which caused intense hopelessness, rage, and then numbness, all within a couple of hours. These mood swings are becoming more and more frequent, and I don't know what to do when I experience such dramatic changes in emotion. (I haven't been seeing this psychologist long enough for us to make any progress in that area, as we are focussed on other, specific things during sessions. I also can't afford to see her every time I struggle, because I'd need to see her every day.)

I'm interested in hearing about how people have dealt with the issues that I face. I'm also interested in hearing about how people manage when they have almost no support from family or friends, as that is my situation. And in general, it would be nice to feel like someone cares.

I am currently dealing with the following things:

• Alcohol Use Disorder. I have been sober for a little over 2 years, and am very scared of relapsing.
  
  
• Nerve sensitisation, diagnosed after 13 months of constant physical pain. It has been over 16 months now. I had access to a pain management clinic which failed to support me, so now I am waiting to access a new one, and in the meantime have no way to reduce my pain. Walking, sitting up, and almost every basic function causes pain. I have been misdiagnosed and led down incorrect treatment paths several times.
  
  
• Anorexia. I lost a lot of weight late last year. I am pursuing a diagnosis, and have only just finished getting assessed by a dietician today.
  
  
• Depression. I feel like I have zero energy to do anything, care about anything, or even get out of bed. This is a huge issue, as I am the only person coordinating my healthcare or finding support. Depression threatens my ability to help myself and ever get better.
  
  
• Suicidal thoughts. I often feel that the only way to escape everything is to harm myself. I have previously gone to the ED with actual suicidal intent, leading to horrific healthcare experiences that pushed me closer to suicide. (Please note: I will never access the ED again, so this should not be suggested.) I no longer experience suicidal intent, just suicidal ideation, but the ideation is still very distressing.
  
  
• Anxiety. I am often obsessively worried about things going wrong.

I am dealing with all of this on my own, as well as some other things that are too personal to list. I have also experienced a history of humiliating, frightening, and inappropriate behaviour from psychologists, doctors, physiotherapists, and counsellors, so that is also impacting me as I try to coordinate my own healthcare and access help.

When I was younger, I often had only one serious health issue at a time, and I could focus on managing that, without worrying about other things. How do people manage when the diagnoses and symptoms start to stack up and impact each other? What stories are there of people who have conquered a long list of conditions and emerged happier/healthier?

I would like to have some hope, and feel that it is possible for me to manage my health. Because, right now, everything feels impossible.

I have never written in a forum like this, so apologies if this is too long, or too much information. Thank you in advance to anyone who helps me. I hope everyone who reads this is doing okay.

[Miss-wish]

I am so sorry you are dealing with this @D1ng0,

I understand the struggle with doctors and other professionals not treating you as you should be, that has been of mine and my  children's battles for years, but are slowly building up a team that understand them. When I was younger I put myself in hospital twice, and numerous times I sat  and started thinking of ways I could. The thing that pulled me though was my kids. My now 24yo, from the age of 10 or so would tell me how they didn't want to be here, a few years later they started self-harm. It wasn't until they became their true shelf that She was able to handle things a bit better. 

I don't have first hand knowledge about everything you are dealing with, but I am here to support you. I know what it's like not to have support from family and friends, how hard it is for people that haven't been though the same to understand. 

You can even YELL at me and I wont take offence, just as long as you are getting what you need to be supported.  

[Jynx]

@D1ng0 first off, a little tip - if you want other members to be notified that you've responded, use the @ symbol to bring up a little drop down, then choose (or type out) their name from the drop down so it shows up in blue, like this: @Miss-wish. More forums tips here.

You're welcome, happy to help out. I use they/them/theirs 😁 Oh and don't worry about post length! As long as it's within the guidelines, you can write as much as you like, as long as it feels helpful to share 💜

Oh goodness, yeah getting a new dianosis can be so challenging, like oop - there it is in writing, made all too real. And then adding a stressful family call on top of it all? Yikes! Big day for you. It can take time to process all the thoughts and feelings that might arise, so I hope you can give yourself a bit of grace, and take time to rest/replenish yourself if you can. 

Have these mood swings been worsening lately? They can certainly throw us for a loop, and the distress of being thrown around by rapidly changing emotional states then adds layers of further distress into the mix! Do you have things that you find helpful in self-soothing? 

I am also hearing that you've had some really unhelpful/traumatic experiences with the health system, which can make it that much harder to feel safe to access support. I'm sorry that your experiences with the ED were so unhelpful, and I wish I could say that it's an isolated incident, but you'll find plenty of others here with their own stories. Some bad, yes, but others pretty good. It really can be a roll of the dice, and I hope you don't end up having to roll those dice again, but there are good people working in the MH system, just gotta find em. I hope your psych ends up being someone with whom you can build trust, feel safe and supported, and be able to delve more deeply into your experiences. 

When things start to stack up, we got a few options I reckon. You've already jumped onto one of them, which is to find others who can understand what you're going through - the forums are great for that! We can also:

- Focus on our basic needs as a starting point; i.e. shelter, food, sleep, exercise

- Try to build and improve on our coping skills; e.g. grounding, mindfulness, distraction, progressive muscle relaxation, dancing, singing, art, exercise, etc.

- Work on a safety plan; you can have one for suicide ideation and one for general distress, or just make one for both. You can find a template here.

- Increase support; I know calling us went a bit awry for you today, but I hope that doesn't discourage you from trying again, the counselling team are a lovely bunch. You can also see if you're eligible for our Guided Service, which is a series of telehealth appts with a counsellor or peer support worker, and can provide some additional support in between psych appts. You could also seek out local community services, find online groups, or find other support lines.

Support lines to try: ARCVIC (Anxiety), The Butterfly Foundation (Eating Disorders), Turning Point (Drug & Alcohol), and SCBS (Suicide support service).

You've got so much going on, and managing it all by yourself is bound to leave you feeling depleted, overwhelmed, and burnt out. Recovery is a journey, and it can be a long and difficult road - but you're on the right track, doing what you can to survive, and that is worth some kudos! I know for my own recovery journey (which is and always will be ongoing), it really felt like nothing was working, change was too slow, that I'd never be free of the horrifying thoughts and the immense self-loathing. But now I am so far from that place that it almost feels like another lifetime. Having the right support, connecting with others, and slogging it through the rough times, all went a long way for me. I hope for the same for you.

Hold onto hope, keep taking those little steps forward, and remember you're not alone. 😉💜🫂

[Miss-wish]

@Jynx you always know what to say and have wonderful advice 💕

[D1ng0]

@Miss-wish and @Jynx , thank you very much for your kind words and introduction to the forum, I am very grateful. I need some rest before I can process everything, but I will be responding soon. Goodnight, and thank you again. Wishing you both well.

[D1ng0]

Hey @Jynx , thank you for the long and in-depth response, it is appreciated. Thank you for sharing some of your own experiences, too. I'm super grateful that people like yourself take the time to offer support.

What I find harder than the diagnoses is the sheer effort that it's taking to find professionals who can diagnose me, and the complete lack of awareness that others seem to have for how hard I'm working just to function. On my own, I have had to find a psychiatrist, a psychologist, a second psychologist when the first one made inappropriate remarks, a physiotherapist, a second physiotherapist when the first misdiagnosed and mistreated me, a third physiotherapist for similar reasons, and an entirely new pain clinic where I will (hopefully) finally get the chronic pain management I need... including a fourth physiotherapist. And throughout all of this, the majority of my friends have apathetically drifted away, and my family hardly ever reaches out, even though I have asked. When they do, as that recent phone call proved, it can be even more harmful for my mental health. So I end up feeling that I'm better off isolated anyway.

I'm not sure whether my mood swings are proportionate responses to having chronic pain/nausea, an eating disorder, depression, anxiety, addiction, and experiencing a lack of support (all on top of remaining employed and paying bills)... or whether there's some other condition occurring here. All I know is that when I experience anger, numbness, and panic, the feelings are obscenely strong. And it's frightening.

I don't really have self-soothing things, aside from preventative actions, such as avoiding activities which will cause pain. The only thing I can do in response to extremely strong emotional states is... go to sleep. It's the only way to reset myself.

I feel like all I'm doing is covering my basic needs and desperately trying to scrape together support for everything that's affecting my body and my brain. I have literally no energy for anything else. I know that isolation is making every single health condition of mine worse, but I have no idea what else I can do. It simultaneously feels safest, and most dangerous.

I don't really know what to do when people advise me to be mindful. All of the physiotherapists I've seen have told me to just be mindful. I know what the theory behind it is, I know that reducing stress responses helps teach the nervous system that there is no continuing injury, but I simply can't be mindful in this situation. I have tried all of the activities/approaches recommended to me, but they either cause physical pain to flare up (eg: yoga), or they're totally ineffective (eg: meditation). So I feel pretty hopeless when mindfulness is suggested.

Part of the reason I'm reaching out to SANE is because I'm hoping that others who are isolated, and who are living with multiple complex mental illnesses, will empathise with what's like to have nobody to turn to whilst managing everything. I have pretty deep experiences of trauma as well, caused by family and by healthcare misconduct, so empathy on that front would also be very appreciated. It would be reassuring to know that some people in SANE have rebuilt a fuller life if they've sought that. To anyone who replies to this thread, thank you so much in advance.

[tyme]

Hey there @D1ng0 ,

Thanks for reaching out again. It's great to see you. We hope you feel less alone as you reach out here to others. There are certainly others who have been through similar experiences.

We rcognise that mental health challenges can be complex. I, too, have lived through extensive mental health challenges. I want to use my experiences to support others. 

You are not alone.

We are here for you.

[espressologic]

Hi @D1ng0 @Miss-wish and others reading,

I hope everyone is doing well this morning - just wanted to check in briefly about a few things that have come up here in the past week.

Firstly, a bit about how we moderate posts in the forums. Each day, our dedicated moderators and peer support workers engage with hundreds of posts, in addition to participating in conversations and crafting supportive responses. Despite our best efforts and intentions, it is possible for a word or detail to go unnoticed. This is what occurred last week with an otherwise supportive and positive post that included a brief reference to a self-harm method. 

As our team is small and our participants are many, we need your help to maintain the safe environment we have here on the forums. If you ever see posts that don't meet our community guidelines, please report it to the moderators so we can take a look at it. Please know that we also work behind the scenes to communicate with members over email, as well as online. While you may not see every action taken by our moderators on the public forums, rest assured that we are continually working to ensure the wellbeing of our community.

Secondly, we understand that reading about methods of self-harm has been upsetting to some members here in the thread.  However, I also can see from reading through all the posts that everyone here is acting in the best of intentions to provide support and connect with each other. Please give each other the benefit of the doubt when reading posts, and approach with the assumption that everyone is coming from a place of kindness. We have all experienced different, complex journeys to bring us where we are today but I hope we can come together on the desire to learn from and support one other. 

Thanks everyone for your time in reading, I look forward to seeing the valuable support discussions here continuing.

PS. I have edited some of the preceding posts in the thread so we can keep things on topic.