Lived Experience Forum

[tyme]

Hey there @D1ng0 ,

How are you going? I wanted to check-in to see how you are travelling at this time. 

Hope to hear from you.

[D1ng0]

Hey @tyme thanks for reaching out. I'm not doing well. I still feel very isolated. It would be helpful to hear from people who have experiences with chronic pain, eating disorders, multiple mental illnesses, and isolation.

I have also started having nightmares again, which is hugely draining. The nightmares focus on relapsing, which means my day starts with waking up certain that I've drunk alcohol. It's not even the most urgent mental health issue I'm facing, but it's not nice. A wave of anxiety and shame first thing in the morning is making it harder to cope with everything else. (And it doesn't feel particularly fair since I've been sober for over 2 years. That has taken a lot of hard work, but my subconscious doesn't seem to consider that...)

I am also preparing for my first appointment with a psychiatrist, which is necessary for the review of my Eating Disorder Plan. I'm pretty anxious about it because other people in my minority community have had pretty horrific experiences with psychiatrists. So, if anyone has tips on how to advocate for yourself with a psychiatrist, that would also be helpful. (I've only ever had experiences with psychologists, so I don't know how different psychiatrists are.)

Cheers in advance.

[tyme]

Hey @D1ng0 ,

I don't fit your entire list there, but I can relate to isolation, having multiple mental health conditions and disordered eating (not eating disorder).

I have to say that I went through a really really rough decade in my life. Every day was a reminder of how bad I was and how much I shouldn't be around. 

It came to the point where I became so sick of myself, and I honestly reached out with the purpose to recover. And since then, I've never looked back.

It's been a rocky road. So many ups and downs. Yet I'm hear because people (such as the ones on the forums) have been so supportive.

@D1ng0 , please know you don't have to do this alone. It may feel like you are isolated and alone, but we are here for you.

[D1ng0]

@tyme Thank you for the empathy, it is much appreciated. I'm really glad you've found support and (it sounds like) a more positive state of mind. I can empathise with feeling that negatively about oneself, I used to feel that way very intensely. I feel pretty fortunate that I'm not dealing with that now. Despite everything, I definitely don't still hate myself or have a low opinion of myself, which feels like a victory. If anything, I desperately care about protecting my mind and my body, and I'm working really hard to try and find practitioners who can help my systems heal. It just feels like such a long journey when I'm in constant physical pain.

[tyme]

I think physical pain can really affect one's mental health. I've got back issues and there are times when I'm in so much pain that my mind is weakened. I can't move for days and each slight movements sends searing pain throughout my body. 

@D1ng0 , I can only imagine what chronic pain can do. There are other members here on the forums who endure chronic pain on a daily basis. I'm hearing how much it affects their MH. 

I'm so glad to hear that you are proactively keeping your mind and body well. This is certainly a great start! Are there specific things you do to do this? 

[D1ng0]

@tyme Sorry for the delayed response! Please know that I'm really thankful for your support. I don't know what the etiquette on this forum is, but if there's a delay in my replies, it's just because I'm struggling 😊 It's not a lack of appreciation.

Thanks for sharing what your experience has been with your own physical pain. It's pretty validating to hear how other people experience physical pain, and how even temporary pain can lead to mental distress. It makes me feel like I'm not overreacting to being in pain 24/7.

I'm still struggling to figure out tactics to protect my mind and my body, to be honest. Several of the things I've done ended up being harmful, and directly worsening my pain. And because physiotherapists, psychologists, doctors, etc have misdiagnosed me and let me down repeatedly, I don't have the healthcare support I need to understand these really complex conditions. So at the moment I feel like I'm stuck in an in-between stage, between being in crisis and being well. Probably a stage that a lot of people in this forum can relate to.

Recently I was also told by a mental health practitioner that I probably have OCD, too. This wasn't a surprise because for as long as I can remember I have had to repeatedly tap, blink, and breathe in certain patterns, in order to feel "even" and prevent bad things from happening. And when I was a teenager a different psychologist made the same observation. But being told that again feels really overwhelming... It feels like just another aspect of my brain that I don't properly understand. So that's another aspect that makes me feel exhausted, right now.

[PizzaMondo]

Hello @D1ng0

I just read your post and connected with the feelings of overwhelm being told again that you are living with something that your brain is unable to properly understand.

I live with OCD also, and feel when our brains are trying to compute at ten million miles per hour already, having to navigate several things at a time (one of them being our own selves, mental health and our wellbeing!) we are left feeling super exhausted - especially when during a lot of that we're doing things (similarly to what you described) to feel "even" ..

I have two questions - but feel free to answer when you have the capacity - or not if you don't feel like it - no pressure 🙂

1. Are you currently working with anyone/being supported by a professional for this "probably OCD"? (Just using your words, sorry to highlight in that way - hope it's OK)

2. I'm super interested in what brings you joy - what does @D1ng0 do for fun?

Warmest,
PizzaMondo 🙂

[D1ng0]

Hey @PizzaMondo, thanks heaps for your supportive response on this thread, I really appreciate it! And thank you for sharing your experience as someone living with OCD.

No, I'm not currently being supported by a practitioner for the OCD specifically. I've brought it up with my psychologist, but we're mainly focussed on other things. I have to prioritise being diagnosed with anorexia first, and then I need to prioritise my depression. I also don't know if I need a diagnosis (but I might, since OCD could be impacting me in ways I simply am not aware of). I'm usually able to resist doing my OCD movements. The compulsions still happen, but (unlike when I was a kid) they don't halt my day as I blink/tap/breathe until I feel safe. Because I can live with those thoughts and they don't control me, I'd rather prioritise diagnosis of anorexia (which is making my pain really bad) and treatment of depression, anxiety, etc.

Thanks for your second question, it's a nice change of pace. I'm sad to say that depression and chronic pain have taken away most of my joy. It's been really crushing to try and have fun with hobbies that used to bring me joy, and feel totally numb. Friends make me feel joyful, but because my pain is so severe, seeing them can be very hard. And most of my friends have stopped reaching out. (I get it, as I'm not very fun to be around most of the time, but it does hurt.)

Probably the most joy I experience these days is satisfaction when I complete a project at work. It feels like a huge accomplishment with everything that's going on.

[PizzaMondo]

I'm glad we could connect in this way @D1ng0 🙂

To me it sounds like you've got a clear idea of which area you would like to work on right now and I think that is very important - tackle what is important first, and see how you go - checking in what "what do I need right now?" often! I can see thaat your pain has been a huge factor and I know chronic pain impacts our lives wildly (e.g. no longer finding joy in the things you once used to, or being able to feel so connected or have the spoons for social times), so I also encourage you addressing the areas you highlighted.

I can empathise with the feelings of hurt around when friends stop reaching out - it's not a nice feeling but at the same time I'm curious if you've been able to reflect on the friends (that come to mind) who are no longer reaching out - what kind of friends were they, e.g. friends you went out to dinners with, or played sports/did activities - things that perhaps your body and mental health don't have the capacity for right now.. Because my reflections led me to understand that the friendships I was grieving were the ones who required a lot of active socialising through doing tasks/activities together where I had to mask my neurodivergence a lot and hold all my overstimulation in until I could pop off back at home.. so in a way, for me, I learned, HEY it's OK, because right now I don't have the capacity for that, and those friends are also not the people I need right now - I hope that makes sense, but basically allowed me to reassess who is important to me and who has the capacity to support me in the way I need right now too.. Friendships aren't one-sided after all, and involves hard work, just as much as any relationship 🙂

I love your last little share, sounds like a huge personal win when you're able to complete a project at work! I can imagine it ticks the boxes for you in a way that you can experience being proud of your efforts, work and self.

Warmest,
PizzaMondo 🙂

[D1ng0]

Hey @PizzaMondo thank you for your kind words!! I really appreciate it. And it's very cool to know that this community is a place where I can seek insights into living with OCD when I'm ready.

Since I last posted on this forum, I've had my psychologist appointment where I expected that the psych would affirm the dietician's assessment of an atypical anorexia subtype. The psych instead diagnosed bulimia nervosa. In retrospect, this diagnosis does make more sense and it's probably easier for me to explain to professionals and family, but boy... it's a lot to adjust to and take in 😅 So, that's why I took a break from responding to anything...! I'm very overwhelmed. And tomorrow I have my psychiatric eating disorder plan review, so it's a big week.

Thanks for sharing your experience around losing contact with friends, and being unable to do certain activities. I really appreciate your insights, as isolation is one of the things I struggle with the most. I have reflected a lot on why people are drifting away from me. Now that I'm not reaching out as much, often because I'm simply unable to (or I don't want to bother people with how unwell I am), I'm realising that I usually initiate hanging out. If I don't do that, hanging out simply doesn't happen. So I think things were a bit one-sided to begin with.

Having said that, I do treasure my two closest friends, although we will go through periods of not talking. One of those friends is neurodivergent and I know they're dealing with a lot, and the other friend has always withdrawn from socialising when they're struggling with mental illness. So I reach out and know that they'll respond when they're ready, even if it takes days, weeks, or more. I do appreciate when I am able to see them, and I also really enjoy offering support to them as well. I'm often left with zero support because of the situation I'm in (professional support aside), but that's... just the way it is. I literally don't think I can do anything about it. The situation makes me feel very powerless, a lot of the time. But I do love the two close friends I still have.

Sorry for the lengthy reply 😅 Thanks very much for reading, I'm very grateful for this forum.

Work is the source of more happiness too, in the sense that I have a very understanding boss who is accomodating of my physical and mental conditions. Even when I'm at my lowest, I still feel very fortunate for them. Without my job, I genuinely don't know how I would live.

(PS: I hope everyone reading this is doing okay.)