Lived Experience Forum

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 💜

Thank you so much! When I touched base to see if they received my email they mentioned that they have a lot of volunteers at the moment and so I might be waiting a little bit longer than I first thought 😊

I’m so sorry to hear how rough things are for you and as I listened to what you shared with me, I can really hear the heavy toll that this non-contact period is having on your mental health and wellbeing 💜 As such, I just ever so gently wondered if there are people in your life who you can reach out to for some additional support?

That makes so much sense about the way that you’ve had to schedule your appointments with your Psychologist 💜 Trying to stretch your Mental Health Care Plan over the course of a year is so incredibly difficult and ten subsidised appointments per calendar year falls woefully short of the amount of support that people realistically need 😔

As such, I think that contacting the Employee Assistance Scheme is a really great idea! This is something that I’ve accessed in the past too and I found  attending regular appointments with the Psychologist incredibly helpful.

Sometimes just having someone to talk to can make a huge difference and this in itself can really help us to be able to keep our heads above the water in between our scheduled appointments 💜

In my experience, finding affordable support can be really difficult and so I just wanted to share a couple of resources that I’m aware of - in the hope that some of these may be helpful for you too 💜

The first resource that comes to mind is a Neighbourhood Centre. Basically, these are community based organisations that provide a variety of different services which can include counselling 😊

Although they’re unable to provide specialised counselling in relation to issues such as complex trauma, most centres provide counselling in relation to issues such as depression and anxiety for a relatively low fee.

For example one of the Neighbourhood Centres where I live charge thirty dollars for an hour appointment, which is further reduced if you hold a health care card or a concession card.

Also, some of the universities have Psychology Clinics that provide counselling for members of the community 💜

Although these services are often short term and provided by provisional Psychologists, they can still provide a really valuable service for people who need to access support that’s a little bit more affordable.

And of course last but not least you’re always welcome to access SANE’s support services 💜

Basically, SANE offers a range of free digital and telehealth support services for people over 18 years of age with complex mental health needs, and their family, friends and carers. 

I’ve just included the link to this particular section of the website, just in case you would like to take a look and see if there’s anything that you feel may be helpful for you 😊

https://www.sane.org/get-support?_gl=1*1cfv3tx*_gcl_au*MTY3NDc5NjM2MC4xNjg2OTgxMzE5&_ga=2.8964338.61...

I hope that this helps you a little bit and please know that I’m thinking of you and sending heaps of hugs your way 💜

Take kind and gentle care of yourself,

ShiningStar 💜

[ShiningStar]

Hi @Fireflyseeker 

Thank you so much for touching base with me again - that’s so lovely of you 💜

That’s absolutely no worries at all 😊 I completely understand about the need to post messages while they’re still on screen 😆

Just reading your message today and your offer to listen to some of my struggles really touched me and I just wanted to say thank you so much - I’ll definitely share some things with you next time 💜

Until then, I’ll be thinking of you too 💜

Take kind and gentle care of yourself,

ShiningStar 💜

[Fireflyseeker]

Hi @ShiningStar 

It's wonderful to receive your message,  as always 😊 

Oh, that's a shame that you will need to wait longer for a chance to volunteer.   But it is great they have so many volunteers. 

After 35 days no contact I decided to break it.  I was so severely depressed.   And I knew talking to my ex would make me feel better.   However I have since discovered that I think I have an underlying depression.   I had a bad day yesterday where I felt like I had a black hole inside of me and it was sucking everything in.   This may have been exacerbated by lack of contact with my ex and lack of contact with my best friend who I message every day.  My ex left his phone at a friend's and my friend was busy with her toddler.  So no messages for several hours.  

But I keep thinking about what all the self help people say in that you should be able to find happiness within yourself and shouldn't need other people to make you happy.  So I feel like I am failing at that when I need contact from other people to be happy.  But then I think we are pack animals so surely it is natural to need other people?

Yes, the ten psychologist appointments are inadequate.   I did have an employee assistance scheme appointment but it just made me feel worse rehashing my problems.  She did recommend a couple of websites and when I checked them out I wasn't impressed.   The first one was some guy doing a lot of talking but not saying much at all.  And the second one was a dating website which charged $5000 for their assistance.    I thought that was very irresponsible of her to recommend that,  if not unethical.   So I won't be going back to her.  And it seems they are only counsellors and not psychologists 😔

Thank you for your recommendations on finding further assistance.  I will check them out 😊

I am home from work today as my daughter isn't feeling well.  But problem is I have very little leave left.  But she has promised me she will go to school for the rest of the week. 

Amd I do mean it,  if you would like to share with me I am only too happy to listen.   I sometimes feel that these messages are all about me.   So if I can support you in any way I would love to. 

Take good care of yourself.  Hugs. 

Firefly seeker

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 💜

As I sat here listening to everything that’s been happening for you, I can really hear your pain and distress 💜

As such, it’s completely understandable that you reached a point where you just needed some relief from how you were feeling and so it makes so much sense that you reached out to your ex-partner. I wasn’t too sure how this went for you and as such, I just ever so gently wondered if you managed to talk with him and (if you did) how did this feel for you?

So very often, the relationships that we share with other people provide us with a source of comfort, support and security. Therefore when our connections are disrupted (even if it’s just temporarily) we can experience some incredibly powerful emotions which stand to exacerbate how fragile and vulnerable we’re feeling and this in turn can be the straw that breaks the camel’s back 💜

I’m so sorry to hear that you had a bad day yesterday 😢 Depression can be absolutely horrendous to live with and as such, I can really relate to your description of how this feels for you. In my experience, living with depression seemed to suck every ounce of life out of me while simultaneously draining the colour from my world. Trying to get through a day became a monumental battle and I felt as though someone had strapped heavy boulders to my back and asked me to climb Mount Everest!

Oh Fireflyseeker 💜 I’m so sorry to hear that this particular theory has had such a profound and distressing impact on you. As such, I just ever so gently wanted to reassure you that as human beings, we’re wired for connection and as such, this is a normal and healthy need that we all have 💜 I also just wanted to reassure you that craving connection in no way means that you’re a failure, but rather it means that you’re an amazing human being who has needs. As such, I truly believe that it’s the connections that we develop through the course of our relationships that ultimately support our health and wellbeing 💜

I’m so sorry to hear about your experience with the counsellor at the Employee Assistance Program and I felt myself cringe when you shared how they suggested that you contact a dating website! I completely agree that this was highly inappropriate and it’s absolutely no wonder that you made the decision not to schedule any further appointments with them.

Given everything that’s been happening for you and how low you’re currently feeling, I just wondered if you would consider contacting the Employee Assistance Program to see if it would be possible for you to see a different counsellor?

It was my pleasure to share some resources with you 💜 Although there are limitations in terms of the type and level of support that they can provide, you may find that they can still provide you with a much needed life line 💜

I’m so sorry to hear that your daughter has been unwell and I hope that she’s feeling a bit better now and was able to return to school 💜

Thank you so much - I would love to share with you 💜

Lately, I’ve been feeling a little bit overwhelmed with some health issues. A couple of months ago, I had an ultrasound which revealed that I have a cyst in my hip. My GP referred me to the orthopaedic clinic at the hospital and what I thought would be a straight forward consultation now feels a little bit messy.

Basically, the Registrar and the Consultant appeared to contradict each other in terms of treatment options and so it now appears that everything pivots around me having an MRI which is something that I can’t manage as I’m claustrophobic 😢

I tried to have an MRI many years ago and although I thought that I’d done a pretty good job preparing myself (I watched a couple of medical dramas 😆) when I saw the MRI machine in person, I realised just how unprepared I really was!

However, I convinced myself that everything would be fine once I was in there and so in I went 😊 However as soon as the technician walked back towards the console to start the machine, I started to panic and in my desperation to escape, I sat up and hit my head on the roof!

Somehow I managed to scramble out - half falling off the edge of the ledge in the process! It definitely wasn’t a graceful exit and all I can say is thank goodness that I was wearing a long hospital gown otherwise the technician may have seen a lot more than just a distressed patient 🤣

Anyway, the Registrar has referred me for an MRI with IV sedation at an imaging clinic within a private hospital which I was really happy about. However, when I contacted them last week to follow up my referral, they told me that the ‘head technician’ is still reviewing my referral. So now I’m worried that the delay is because they have some reservations around administering IV sedation.

Unfortunately, this is the only way that I can tolerate the procedure and without the MRI, the consultant made it clear that it would be impossible for them to determine the cause of the cyst and a course of treatment. And so in the meantime, I’m just waiting for the imaging clinic to call me back.

Please know that I’m thinking of you at such a difficult time and sending you a multitude of hugs 💜

Take kind and gentle care of yourself,

ShiningStar 💜

[Fireflyseeker]

@ShiningStar 

Hi again ☺ so good to hear from you.

You are a very empathetic and caring person ❤ 

I did talk to my ex and we started having lunch together on the days he was at work.   We are both on leave for school holidays (his daughter is the same age as mine) but we still message several times a day.  Being back in touch has definitely relieved my depression.  However the problem still remains that I don't think I can get over him while having contact.  But right now I am not worrying about that part. 

Yes. Depression does feel as you've described. 😢

At this point in time I am not going to try the EAS again. 

My daughter is all good now thank you. She is at vacation care today.  Giving me a much needed break.  Tomorrow we are flying to Canberra to visit her donor brothers.   Their mum and I used the same s p e r m donor and we found them through ancestry.   We have met them twice before.  But this time we will be staying at their house.   So hopefully it will go well. 

I'm so sorry to hear about the cyst on your hip.   Is it painful?   That would have been a dreadful experience in the MRI machine for you.   I have had them before and I know how tiny those tunnels are. 

I am glad they have offered the sedation.   I don't know why it is taking so long to review your referral but I don't think it would be because of the sedation.   I would imagine they would do MRIs with sedation on a regular basis.  But I do hope you hear from them soon as it must be terrible having this worry about your health hanging over your head 😪

I am currently waiting on results from a cervical screening test.  Last time I had some abnormal cells which were low grade changes so it was just a watch and repeat in 12 months.  I just had the repeat test today but lab time is about 3 weeks.  Hopefully it will be a better result this time 🤞

Wishing you all the best and sending hugs. 🫂

Fireflyseeker 😊

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 💜

Oh thank you so much - that’s such a lovely thing to say 💜

That’s completely understandable and it makes so much sense that reconnecting with your ex alleviated your depression 💜 Absolutely! Maybe for now it’s not about trying to address other issues, but rather it’s about prioritising your mental health and focusing your energy on what you feel you need to do to take care of your emotional wellbeing 💜

I’m so pleased to hear that your daughter is feeling better and that you were able to have a little bit of respite when she attended vacation care - it must be hard to find moments where you can take a break 💜

Oh wow! I think that’s wonderful that you found your daughter’s brothers through Ancestry 💜 This sounds like such a monumental life changing moment and as such, I just ever so gently wondered what it was like for you and your daughter when you first met them?

Thank you so much for listening to me and for your compassion 💜 I’m often in pain in my joints (especially in my hips) but it’s hard to know if the cyst is contributing to this or not.

I thought so too and so I was really surprised when the consultant said that they don’t provide IV sedation for MRI’s - especially given how they’re a tertiary hospital and other patients would require this too. I’m going to wait a little bit longer and then I’ll contact the imaging clinic at the private hospital (where they referred me) to see where things are at 😊

I’m so sorry to hear about your test results and my heart goes out to you 😢 I had abnormal results a few years ago too and I found the uncertainty and constant state of limbo incredibly difficult and stressful to sit with 💜 I really hope that everything is ok and please let me know how you go - if this is something that feels safe and comfortable for you to share 💜

Also, I just wanted to share some other news with you 💜 For the past two years I’ve been part of SANE's Community Guide Program 😊

Although I’ve absolutely loved the time that I’ve spent volunteering as a Community Guide, I’ve decided to hang up my little star and step out of this role. Although I’ll still be around, I won’t be on the forums as often as I use to be and so please don’t worry if it takes me longer to reach back to you 💜

I’ve also decided to take a month away to recharge my batteries - but I’ll definitely touch base with you when I return 💜

In the meantime, please know that I’m thinking of you and sending you heaps of hugs 💜

Take kind and gentle care of yourself,

ShiningStar 💜

[Fireflyseeker]

Hi @ShiningStar 

Thank you for taking the time to reply to me 😊

I currently text with my ex daily and we have lunch (30 mins)  together at work 3 times a week.  On the other 2 days of the working week we have a 30min phone conversation.   So far this is working for me.   Whilst we hug and sit side by side touching at lunch we have not given into our urges and have not been intimate.   I realise I will not really get over him like this but it is all I can cope with for now. 

I don't really remember the first time we met my daughters brothers.  But they get along really well and we will definitely go back to Canberra to visit.  And luckily they have invited us back. 😊

Sorry to hear your pain is chronic.  I know how this negatively affects mental health.  And makes every day a struggle 😞 I had a back injury many years ago and was plagued by chronic pain until after 2 lots of surgery.  

My test results came back as "moderate risk".  So for now it is still wait and test again in 12 months.

Thank you for all you have given the SANE community over the past 2 years.   You definitely deserve time away.   I hope it is enjoyable 😊

I look forward to hearing from you on your return. 

Take care ❤

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 💜

I’m so sorry that it’s taken me so long to reach back to you 💜Things have been a little bit hectic lately and somehow the time just got away from me.

Oh wow! Fighting the urge to be intimate with your ex is an absolutely huge and amazing achievement and I just wanted to take a moment to acknowledge the enormity of what you’ve achieved - that’s incredible!

In my experience, changing patterns of behaviour can be an incredibly complicated process and as such, I really love how you’ve created some strategies to balance achieving and sustaining the longer term changes that are important to you with what you can safely manage emotionally 💜

Sometimes in our determination and desperation to change the parts of our lives that are causing us distress, it can be really easy to forget to take care of our emotional safety. However, I truly believe that this is an incredibly important part of the process and as such, I just wanted to say that the way that you’ve considered this and the changes that you’ve made are amazing and definitely more than enough 💜

That’s so great that your daughter gets on well with her brothers and that you’re able to return for another visit - how often do you catch up with them?

Absolutely! Living with chronic pain can really take a toll on our mental health and overall wellbeing 😔 I’m so sorry to hear that you injured your back and had to undergo several surgeries to relieve your pain and as such I just ever so gently wondered if you still experience pain or if this is something that you’re able to manage?

After countless telephone calls and a few dead ends, I’ve finally found a Hospital that provide MRI’s with sedation and so I now have an appointment at the end of October 😊 I’m actually relieved that there’s a bit of a waiting time as it gives me a little bit longer to prepare myself! Hopefully this will provide the missing pieces of the puzzle and the specialists will be able to determine if I need any further treatment and what this will look like.

Oh Fireflyseeker 💜 I’m so sorry to hear about your test results and as such, I just ever so gently wondered how are you feeling about this?

Oh thank you so much 😊 That’s such a lovely thing to say and I just wanted you to know that your words mean so much to me 💜

It’s always so lovely to be able to talk with you and please know that I’m thinking of you and sending you heaps of hugs 💜

Take kind and gentle care of yourself 💜

ShiningStar 💜

[Fireflyseeker]

Hi @ShiningStar ,

Firstly my apologies for taking several weeks to reply! 😔  I do not even have a good reason. 

I have today gone no contact with my ex.   I did this because yesterday he didn't treat me well enough and I was absolutely miserable.   And it's not the first time.  So with a heavy heart I have told him I am taking a break from him and that he is not to talk to me at work.  I can't really look into the future more than one day. 

I am so glad to hear you will be able to have your MRI with sedation 😊  good on you for prioritising your health and persevering to find the care you need. 

We unfortunately only see her brothers one or 2 times a year.   But we have video chats.  And now my daughter and her older brother have kids messenger so can sometimes interact on the weekend every now and then. 

I am very fortunate that I no longer have back problems.  Thank you for asking. 

How are you managing with your pain?   What date is your MRI? I imagine by the time you read this message you will have had it.   Do you have an appointment to go back to your specialist for the results?

I hope things are going well for you ❤

Take care and hugs 

Fireflyseeker

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 💜

Oh please don’t worry about the time 😊 There’s absolutely no judgement here and you’re always more than welcome to reach back whenever you can 💜

I’m so sorry to hear that your ex hasn’t been treating you well and that this has happened before 😔 Just from what you’ve shared, it’s no wonder that you’ve been feeling so miserable! Having to make the decision to stop contact would have been incredibly painful and I can really hear how deeply this has hurt your heart 😔

As I sat here listening to you, I felt a little bit concerned about some of the things that you shared and as such, I just ever so gently wondered if you feel safe around your ex and if he’s been respecting your boundaries when you’re at work?

Catching up via video chats and Kids Messenger sounds like a great way for your daughter and her brothers to stay in touch! It’s hard to believe how we managed before technology 😊

Thank you so much for saying this - I’ve been working really hard to advocate for myself so that I can have the procedure done in a way that feels safe for me 💜

The MRI was scheduled for the 30th of October and so I arrived at the hospital at 8.00am for a 9.00am start. Everything seemed to be going well until the nurse explained that even with sedation, I would be conscious! This completely threw me, as I was of the understanding that I would be completely sedated and that I would ‘wake up’ after it was all over!

Unfortunately, an Anaesthetist would need to administer the type of sedation that I need and because this wasn’t something that this particular hospital could do, I ended up cancelling the MRI and coming home 😔

Since then, I’ve been emailing and calling the Orthopaedic Clinic at the hospital (where I attend as an outpatient) to try and work out a way forward.  

So far, I’ve managed to get a chart review and so I’m really hoping that the consultant will be able to arrange for me to have the MRI done (fully sedated) at another hospital. Hopefully, I should hear something within the next few weeks - I’ll let you know how it all goes 💜

I can’t believe how quickly this year has flown by! Do you have any plans over the Christmas and New Year period?

Please know that I’m thinking of you and sending you heaps of hugs 💜

Take kind and gentle care of yourself,

ShiningStar 💜