Lived Experience Forum

[Doglover]

Hi @Zoe7 ,

Just a quik reply tonight. I only have internet on my phone and it takes hours to reply to my messages. Im  not complaining, i really appreciate receiving them, but ive run out of time tonight to properly reply. Hopefully will do so tmrw. Am starting a new med tonight, one for long term treatment of anxiety, which im not currently on after several failed attempts. I so hope this works. My anxiety is through the roof tonight so it feels like il need a horse tranquiliser to settle me down! In my other post i talked about my concerns re salt and that it seems to have a massive impact on my symptoms, and nobody in the med profession believes me, well last night we had maccas for dinner (which i dont normally do) and i am so much worse today! So scared that im never going to get better because pretty much all these meds have sodium in them, including the new one im starting, so what if the very things that r supposed to be helping me are actually contributing to the problem?! It rly concerns me, but theres nothing i can do about it because they wont put any credence in my concern and think its just all part of my anxiety, which it may well be, but what if its not? I keep going round in circles with this! Very frustrating!

Anyway, i better sign off for now and get some sleep and hopefully things will be a little less crazy tmrw and il be able to reply to you properly.

Take care ☺

[Zoe7]

Hope you had a good sleep @Doglover Today is another day 

Ihear you about the meds - side effects can be so debilitating but hope this new med works for you

[Doglover]

Hi @Zoe7 

How are you doing?

Things are pretty tough this end. 2 nights on new med and anxiety is through the roof! Head symptoms increased, mind racing, burning sensations throughout my body - all the usual stuff, but seems to b worse. My gp says its all in my head. I just dont know how to keep going! I dont know how you did for all those years! I guess u must have a lot of inner strength, and all the support as u shared. 

Thanks for the info re DBT. The way it was done with the course then the follow up consult sounds rly good. Unfortunately i cant do private - i wish i could. Currently trying to find a bulk billing psychologist that i think i could gel with but thats proving rather difficult. Its amazing that you had all these professionals that bulk billed you - they obviously cared more about your wellbeing than they did lining their own pockets.  I havnt found a psychologist willing to do that. My gp is not at a bulk billing clinic but she has been bulk billing me for a while now due to my financial situation, which i hav appreciated. Mind you, she hasnt made any secret of the financial sacrifice shes making for me. Well, i saw her ystrday and she advised me that she's leaving to go to another clinic that doesnt bulk bill and charges more per session. So now im stuck! I cant afford to follow her, theres a gp at the existing clinic who i have seen once before who seems nice enough, i could see him instead but no bulk billing, unless hes willing to sacrifice his own income for my well being. I would like to go to a bulk billing clinic but i find the gp's usually arent as good, and i dont think changing clinics would work with my salary continuation claim - just wldnt look good. So i rly dont know what to do. Combine that with feeling even worse on this new med, scared that their never going to find the right med, im just rly scared for the future. I just dont know where this is going to end up, but im so scared its not going to be good! I really wish i had the support you had. I know that doesnt take away from the difficulties that you went through, but i just feel like it would make such a difference if i had the right support. I do feel like at the moment i just cant see a way forward, im so scared this isnt going to get any better. I just dont know what to do or who to turn to. Even if i see a psychologist, im wondering if my anxiety is so bad that theres not much point anyway, what are they going to be able to do to help when my physical anxiety symptoms are through the roof! Anyway, im sorry, i know im being really negative today. Im just so sick of this and cant see a way forward. I know i need to take heart from your story, your journey, that no matter how bad things are, they can get better. I just dont know if ive got the right people in my corner to help that to hapn. And this sodium thing, if it rly is a problem like i think it is, as long as they keep giving me drugs with sodium in it, or one's that increase adrenalin, im not going to get better, only worse like i am now. I just need someone to listen to me and believe me!!!! And no one will, they all just keep saying its all in my head!! I just feel so, i dont know, lost, disheartened, discouraged, scare . 😦

[Zoe7]

Hearing you @Doglover Life is incredibly hard for you right now 

It is times like this that you simply need to get through each day - and hour by hour if that is what it takes. Getting those right supports in place seems so difficulty for you and I know how disheartening it can be when you don't have that. I have been very fortunate to have such wonderful supports and I truly wish you had the same - I wish everyone here had the same - it does make so much difference. All I can say is stick in there Hon - keep searching. It would be amazing to find those supports that bulk bill - you can only ask and see if it is possible with those you contact. This other GP at the clinic you go to might be a good place to start. Here with you and listening @Doglover 

[Doglover]

Hi @BryanaCamp ,

My notifications say you responded to my last message but i cant see a response! Just wanted to let u know coz i didnt want u to thing i was rude and not replying.

I hope you are having a good day today.

☺

[Doglover]

Its certainly a tough road. 6 months down the track and im no closer to being on the road to recovery, and they just keep saying its all in my head when a medication doesnt agree with me, even after ive told them that i am hypersensitive to stimulants and 3 of the 4 meds theyve tried all increase adrenaline in the body! Aaarrggghh!!! It is just sooo frustrating! This is people's lives, livelihoods and relationships they are messing with, and they just dont seem to care!!! My marriage is suffering, wre struggling to make ends meet and i have no quality of life - i just want some professional support around me that actually care about that and genuinely care about me getting better.

If i remember rightly from reading the community guidelines, ppl arent allowed to talk about specific medical practitioners (ie: give recommendations), does my memory serve me correctly on that? Otherwise i wld ask for psychologist/psychiatrist recommendations in perth, but im pretty sure im not allowed, figured that you wld know for sure. 

Thanks so much for your encouragement and support @Zoe7 . I just wish i knew what to do from here! Given that my symptoms seem to significantly increase since starting the new med, i might stop it for 2-3 days and see if things settle down (its one that u can stop straight away, and have only been on it 2 days anyway).

Thanks again for your help! X

[Zoe7]

You are right that you cannot talk about specific professionals here @Doglover so recommendations are not possible. I actually giggle that you have read the Community Guidelines because that is the kind of thing I do too - like to know the 'rules' before I go into things myself 

I totally hear you about the lack of support you have and especially that you are not 'believed' with the side effects you have from certain compounds in meds. This is where having a pdoc to help out would be good - they often know more about meds and can help monitor any side effects. Do you have a referral from your GP for a pdoc? That is something, along with a psychologist, that it seems you really need ASAP. Such a hard road when you don't have those in place but keep looking Hon and we will be here with you as you do 

[Doglover]

@Zoe7  i just did a big long reply and something hapnd and i lost it all!!

Aaarrgghh!!

[Zoe7]

That happens sometimes @Doglover and can be very frustrating. Check in your profile and see if it automatically saved some of it.

[Doglover]

Hi @Zoe7 ,

Just lost my reply again!!! Aaarrgghh! Had done most of my reply, stopped for dinner, came back and it was blank! Rather frustrating! Is there any way you can save your replies/posts if you havnt finished and want to come back to it?

May try again later.