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

[Cuddlebear]

@Till23 @It’s so good to have you back. @AlwaysMyself  Is very likely to be very open to hearing your experiences but obviously I can’t speak for them. 

It’s an open thread too and while a heavy topic it’s such an important one. It’s one where talking about it is so hard while at the same time desperately needed. This is the only place I’ve found where you can really open up and it’s so healthy to do so when you can. 

[Till23]

Thanks @Cuddlebear I have posted in this space before starting a few months ago in supporting another member.

It was on a different thread.

I have not made my own thread here though

I will await @AlwaysMyself as I feel this thread is theirs having started it

[AlwaysMyself]

@Till23 you are absolutely welcome to post here - about yourself and/or your insights into our messages, or anything else. 🙂 

I also love that @Cuddlebear has figured me out so quickly to predict my nature in absolutely being open to it. 🤭 im happy to be predictable in that way lol.

What type of music do you make/like @Appleblossom ? 😊 

@Cuddlebear i used to have a psychiatrist who did psychotherapy, theyre actually the one who put me on my current SNRI. I think i saw them weekly for nearly 4 years? But since I saw them I haven't had any regular psych treatment since mid-2014.

Fatigue is mostly from chronic fatgiue (had since I was 16yo, suspected mild glandular fever trigger). Pain is mostly unknown (fibromialgia maybe?) But also partly arthritis (early signs in one body part when I was 13, knees discovered when 21... I laugh that I got it before my grandma did! But now she has it worse) and also some biomechanical pain which having gained weight the past 15 years has made worse too. But having insulin resistance makes it harder to lose weight, but also feel tired and crave carbs because my body doesnt process the blood sugars (I tried a diabetes weight loss injection over 3.5 years ago and had a severe GERD reaction and now get digestive pain ever since too. But so glad it wasnt pancreatitis because that would have been sooo much worse!!).  I dont mean this to be complaining - just explaining. 

I have always said that for me the worst 'sense' to lose would be eyesight, because of the increased difficulty in getting around independently. When I was a teen I had a vision-impaired friend, and I learned so much from them about accessibility and the importance of it. Thankfully they also had a good sense of humour, because sometimes I would forget they could not see (cos they were just my friend like anyone else!!) And id forget to tell them if something was in front when we were walking oops. Once I walked them into a stack of boxes waiting to be shelved at a supermarket 😅🤣. However I never did it a second time!! It always stuck in my mind. I learnt how they best liked to walk, how to best show them where the seats were. And they were fantastic with directions on how to drive to places from their house (by the turns in the road and how long it takes) - which was great before this was before I had a GPS and I didnt know the roads yet as a 17 year old! They also taught me about their JAWS software when I helped them with computer things, which then helped me as a website developer to ensure I always built screen-readable sites. 😊 i was really lucky to have the opportunity to learn all that so young as it made me so much more aware and wise. They were a good friend too obviously!!

I found it really interesting what you said about people stopping you to say hi in the street with your assistance dog @Cuddlebear . Because I love dogs I always notice people's dogs, and I ask people if I can greet them - but ive always been taught not to do it with working dogs so I dont. But ive also often wondered whether it would be nice for some people to have someone strike up a chat with them - not just about the dog, but its often a gateway to conversations! I often get a lot of people stopping to meet my own dogs, and have a lot of lovely chats with strangers at cafes too from it. 

I want to train my brain to notice and remember positive experiences more. I think it might help build those neural networks. Its hard though because I so rarely have times that I feel "better than neutral". But im trying to make a deliberate effort to check in with myself more whilst doing activities to see if i am having a positive experience (so I can take note of what it feels like if I am). Its probably a strange thing to most people that I dont know what "happiness" is because I dont remember a time when I was happy or felt joy. I know there are things I have like (e.g. travelling) but dont have emotion-linked memories - which is what im trying to improve by checking in with myself during leisure activities.

[Appleblossom]

All sorts @AlwaysMyself from Early music, folk, blues, baroque, classical, jazz… etc… no favourite…Aa.. maybe… sacred music…the whole range is good for wide emotional expression. Least favourite is pop. I do Instrumental and vocal and even some drumming.

yes, it is good to keep focusing on good and positive and productive things. I have always tried to do that, to share good things through my pain. It’s always been obvious to me, in the places I have been, that most people have struggles.

@Cuddlebear so glad you get connections in the street with your dog. 🐈

hey @Till23 

[Cuddlebear]

@AlwaysMyself   Good morning. How are you? Did you have a restful sleep last night? 

I thought you would be open to people sharing here but offcourse I also said for us to wait for a reply from you. I’ve been getting to know you by chatting on multiple threads and glad to hear I’m figuring out what you might say. 

That’s good you were able to access psychiatrist for 4 years. It’s quite hard to do that at the moment as the cost is quite prohibitive for a lot of people even those working. 

It sounds like you have multiple things causing pain plus the insulin resistance. Are you able to take any pain relief that helps? Fibromyalgia can occur from mental illness too so that might be something contributing to pain. I don’t have it but I know people who do and it’s very painful for them. Ah yes the chronic fatigue is so challenging. It is one thing that many people don’t understand thinking someone is tired but it’s a lot more than that. It must be hard having the pain and chronic fatigue together? Is there treatment for chronic fatigue? 

I’m so glad you had an awesome friend as a teenager. It made me giggle that they accidentally walked into the boxes when you didn’t notice them. It’s one of those things thwt when you are around someone who has poor sight or any disability you learn how best to support or assist them in everyday things hinge like when you go to the shops. Yes it’s nice when people say hi when I’m out. It makes my day a bit more social and I learn about people’s pets and we get to admire Wilbur lol! We do sometimes then just chat about other things too and then if they see us out and about again they stop and say hello. 

Training our brains to recognise joy and happiness is a really worthwhile endeavour. When we are feeling sad etc. our brains to recognise can forget to recognise something pleasant we are doing. It’s not easy and it takes practice but re-wiring the brain is something we can be successful at and there’s no side effects. Have you been trying anything that helps you think about something pleasant while you are doing it or even any pleasant stored memories? 

[Cuddlebear]

@Appleblossom   Hello there friend. How’s your Sunday going? 

Great taste in music! 

Yes it’s is really awesome having social chats when I’m out. You feel a bit more connected to community. 

[AlwaysMyself]

That's a huge variety @Appleblossom ! Amazing! Im glad you get enjoyment out of it. 🙂 

@Cuddlebear i did sleep ok, Thank you. 🙂 did you sleep well?

Yep psychiatry is so unaffordable. I was very lucky that I lived at home at the time and only paid token rent of $50/week. Once the Medicare threshold kicked in it was ok, 80% gap covered also lol. But that first chunk before that is a hard pill to swallow!! Hence why when it felt it was going no where we stopped.

Its hard to find affordable experienced MH supports in general i find. 😞 ones who "get it" either from lived experience or from years of listening to clients and learning - not just from a textbook. (Textbook teachings may help most/mild/more-simple cases, but I fit the complex atypical category).

I dont like taking pain medication, I prefer to use mental coping through acknowledging the pain and trying to accept it. I dont want to be dependent on taking medication for it, so I limit that to when its really bad or goes for days and days and im feeling distressed from it. Or if its clearly from an injury and I know its temporary!! 

I get regular remedial massage now and that helps reduce the pain, but $$ too. But for now im forking up for it as part of helping me cope with life overall.

Chronic fatgiue doesnt have a treatment. Some things seem to help some people, but not a single solution. Some people find nutritional supplements help, others say acupuncture helps them... but of course it all costs $$ too right? And they are "ongoing" helps, not "cures".

Its hard to rewire a brain that doesnt experience pleasure or have any memories of it either. The result of severe depression for as far back as I have general memories. I do find that if I substitute the word "interesting" or "funny" instead of "pleasure" or "enjoyment" or "happiness" that helps me be able to start practising with those neutral or positive memories/experiences instead. I can still find things "intellectually interesting" and "humourous". 🙂 which is why I try to seek those things out and celebrate them in life. 🙂 

[Cuddlebear]

@AlwaysMyself   I did sleep well last night. I have sleep issues and see a sleep specialist at the local hospital. I don’t have insomnia though which I’m grateful for. 

Yeah these days psychiatry is expensive. Even on Medicare the gap is hundreds of dollars. It’s something that needs to be addressed by Government and training at University needs an overhaul because so many psychiatrists lack the skills and even personality that can assist us to heal. 

I find it hard to find a MH person who can support me too. Having complex mental health really requires someone with a lot of experience and lived experience is a huge bonus. It is frustrating to me because I try to reach out and find the support poor quality and of too short a duration too. A lot of the problems in Australia really come down to inadequate funding and poorly skilled professionals. 

Yes it is rather difficult being on pain medication. They treat the pain but the side effects cause a bunch of other issues that are as bad as the pain itself. When I had my bypass and part foot amputation I had to go on pain medication and I appreciated the reduced pain but the side effects were very unpleasant. I was very lucky because once my surgeries healed I asked to be slowly weaned off the medications for pain. I thought I’d try to see if I needed them rather than just keep taking them. As it turns out I actually don’t have pain which is wonderful. I’m sorry though thwt you do but you have a strategy that allows you to cope with high I’m really happy to hear. 

Remedial massage is so awesome. I used to have it funded by NDIS but they cut it off this year in my new package. I’ve really noticed a difference. I’m on DSP so can’t afford it but it’s very very good. Isn’t it nice having the muscles worked on to create some relaxation? 

Yes I’ve heard an acupuncture can help with chronic fatigue but as you said it is a therapy that needs to be ongoing and it’s not cheap that’s for sure. I’ve had it once when I hurt my back years ago and it helped and I got such a good sleep that day too! 

It’s so creative to use substitute words to train your brain. There is quite a bit of research being conducted at the moment to help us understand strategies that work in retraining how we think. It takes time to retrain the brain but if we stick with it even in small steps there is improvement over time. There’s some decent videos on YouTube about the brain and how it’s wired and how we can learn new ways of thinking. 

I think you mentioned yesterday you have a partner? Are they supportive? I hope so as it is really valuable and comforting to have one’s partner be supportive. 

[Appleblossom]

I guess I do music as medicine @Cuddlebear @AlwaysMyself so it seems I need to do a lot. I am not great. Became badly triggered, at the end of an event. Some one was critical of me. I had hoped for friendship. It was a weird musical and social experience, cos the other music teacher next to me, seemed to think I did fine. I played about 85-90 % well enough. We were 3 music teachers in the back row playing bass. After person I hoped for friendship from, was obviously not in the mood. It was a big busy day, but I had some good moments, but haven’t been this agitated for about 4 months. I was very agitated last night. Not much sleep. Only a little calmer now. Need to get dressed and walk to the shops. If I didn’t care and hope, maybe I wouldn’t be so hurt, disappointed and distraught. 

Yes, I have put aside money all my life to pay psychiatrist fees and CPTSD related expenses. 

[AlwaysMyself]

@Cuddlebear I wish there was a directory for specialist psychologists/counsellors who have a lot of experience in a niche complex situation area. It would help a lot, especially now that telehealth is an option nationally

I do have a partner/husband. He is supportive "in theory". He wants to be supportive. But I dont think he know how (unless I have told him specific things he can rote-learn, like asking how my day was). He is introverted and not much of a talker these days unless he's talking about anime or video games. His idea of spending time with me is to put on an anime show that I dont dislike (I have never been much into TV or movies). For him, sitting in the same room but doing different things without talking is "spending time together", but the past 3 months he now go to the bedroom to watch/play instead of sit with me and the dogs. His MH has deteriorated over the 6 years ive known him. He did go to his GP 2 years ago and got medication - but not to talk to a psych. GP encouraged him to use the free EAP provided by work, and he had 1 session 3 months ago (said it was helpful and plans to again) but has not booked in again since then. He is always tired now (I suspect due to depression and decreased fitness, he used to be very fit before he moved in) but does not want to do anything about it (e.g. talk to GP to investigate) - he now says he thinks he has enough energy for what he needs to do so its fine. My perspective is that he has no time/energy for doing things with me, or the dogs, and doesnt keep up with the weekly 3hrs of housework/duties (let alone the non-weekly tasks which just pile up). So im at a loss there. I feel like I just have a flatmate who lives his own life, not a partner. If it weren't for the dogs (as I cannot look after them enough myself) then I would probably talk more seriously to him about maybe needing to spend some time living apart so we can spend deliberate time together that is more meaningful for me. I feel he takes for granted the relatively easy life he has - he has not paid rent for 3 years (living in my apartment) until now we have moved back to my mum's so now he pays half the low rent ($250/month each, which is nothing!), and no children - only dependants are our dogs. And im not fussy on housework, so its the lowest-level-possible of housework done (not changing linen and towels nearly as often as recommended (i wont specify frequency due to embarrasement), piles of things around the place still, unpacked boxes...). I do wonder if he would be happier living back with his parents, as he still would not have to do general cleaning duties - only his laundry and maybe cook once a week. I think living independently for him would be a huge shock, but I also feel that maybe he needs that to realise what life is like for most people who have to manage a household (let alone if they have children!). Thank goodness neither of us want kids lol.

Sorry, didnt mean to rant. But whether or not he is a positive or negative factor in my life currently is a hard question. Its yes and no. I like him, and I want the healthy version of him back because that's who I married and love. But I cant force him to want to get help, I can only encourage him to.