feeli like the system fails us

[Wishtobefree]

Hi,  I feel like I've given up hope in life and our medical system. I'm just laying around the house and just waiting, waiting forever for appointments. I've had a long history, since childhood of depression and trauma. From growing up without a mum, to childhood abuse, and neglect, and a major loss at 25 of my sister and Nephew in a road accident, then my only support person, my dad moving to Perth. Along with lots of other things, too many to go into. I was also diagnosed with osteo arthritis and bone degeneration in my spine, hips and neck in my late twenties. Over the years I've worked in many jobs, including my main job which was as a personal care worker for over ten years. I cared for a man for over 4 of those years and then became unwell again. I have always been unwell but had it kind of manageable until then.

I was a single mum of a teenage boy at the time. Had to quit my job and the last 9 years have been a constant struggle. My son left, I became homeless because couldn't afford my rent. Cut a long story short after lots of moving around, finally got a housing trust unit and after dealing with two and a half years of constant stress while living there, dealing with drunken people out the front of my unit constantly and all that goes with that, dealing with junkies, and eopke jumping my fences, being bashed twice while there, and numerous letters to council, HT and contacting police. I succumbed to the stress and gave my unit up. 

I also have CPTSD, fibro, CFS, osteo arthritis, and other ailments. Depression, anxiety, and I've been trying to get help for all this for over about 3 or so years. It's been a nightmare to say the least. I've had to apply for my second exemption for centerlink so I don't have to deal with all their bullshit. I've had at least 6 jobs in the last three years and every time I've had to leave either due to stress or chronic pain. Not to mention the chronic fatigue I suffer all the time. I was trying to get my last DR to help me to do the things I need to apply for the DSP but after her total lack of incompetence, I left there feeling deflated and so depressed I just gave up. Over several appointments trying to explain to her what I needed her to do and feeling like she's got dementia or something because she can't remember one thing from another between appointments. I honestly felt like life was a waste of time.

I've tried to Pur in a complaint about her but had no response. 

I've found a new DR who seems nice but now I'm waiting for appointments. I've been referred to a pain clinic at the hospital which is different to the pain course they recommend you do which I've already done. They sent me a questionnaire which I answered the 1 to 5 questions with the highest rating for everything because that's how I feel. Thinking they would see how depressed I am that they would be in touch soon. After a few weeks of no response I called them to find out I had to wait because there in the middle of moving. It's been a couple if weeks since then. 

• I feel like all these systems they have in place that are supposed to help people with depression and pain are useless. I pretty much have no family except my son, who is 23 and struggling with his own issues. I am in so much pain 247. I have constant numbness in my arms, feet and pain everywhere. I've gone to the hospital before and been sent away. I've called lifeline and felt completely dismissed and was told to call my DR????? What a joke that is. So sunk back into complete despair. I feel like our systems are a complete joke and wonder why there is so many people committing suicide because when you need help it's that hard to get it that hope flies out the door like a bird. I've pretty much given up all hope for my life improving because really no one listens anyway. You get a ten minute slot to try explain it to your DR, which I have to pay a $35 gap everytime. When your on jobserker payment that's almost that hard to have. I feel so sad all the time, don't even want to get out of bed most days..I don't see the point. I feel like no one really cares and our medical system is a joke. I hate life right now and can't see an end to all this any time soon. So just laying around wallowing. Our systems are laughable and I wish I could run away and be a nomad in the bush. It would be more enjoyable than this!

[Eagle Ray]

Hi Wishtobefree,

It sounds like you’ve tried multiple avenues and hit dead ends which is really frustrating. It’s just occurred to me to mention The Blue Knot Foundation who specialise in supporting people with Complex PTSD. You could see if they have any ideas going forward. Their number is 1300 657 380. They are open daily from 9am-5pm eastern states time. I think that’s 8:30am-4:30pm for you in SA. You can call them once a week, usually 30min but sometimes 45min if not busy. I know in one of my calls to them the counsellor mentioned they get a lot of calls from people with CFS and fibro, both which crossover so much with CPTSD.

I really hope the pain clinic works out for you in terms of offering some treatment plus helping with the DSP. They may even be able to help regarding getting all the medical records. It really boils down to having the written evidence of diagnoses and a statement of how the symptoms affect your daily life. I’d definitely include all the diagnoses you have with your application.

It’s terrible the way so many doctors view fibro and CFS. I’ve done a lot of research into fibro in the past decade and there’s heaps of clinical research demonstrating particular changes in the brains of people with fibro, including the inactivity of dopamine in response to pain thus the inability to filter pain stimuli. It’s shown in neuro-imaging studies. But GPs still commonly view it as a purely psychological condition. While it often occurs with CPTSD, it links with developmental brain changes (as does CPTSD). Both conditions have a physiological basis. So it is in the brain and nervous system and is often triggered by epigenetic factors such as cumulative stress, certain viruses, an accident, trauma etc. It’s like the system is already vulnerable and then factors in the environment set it off. I just wish GPs weren’t so dismissive and would stop separating the mind and body.

Yes, chronic pain is so marginalised and it’s like the medical profession struggles to know what to do with it. I have ended up trying to use as many of my own strategies as I can - including meditation and creative activities that act as a distraction or a transformative thing at times too. I know it’s sometimes hard to find anything. During really severe pain from 2005-2008 I got into singing and even joined a singing group. It was agony for me to get there but I found by the end of each session something had really shifted in my body. So often there is still something, even when it feels desperate. I sang a lot in my car today actually as I’m dealing with very difficult symptoms at the moment, and that did shift something in my nervous system.

I know it feels so despairing right now and I relate to that as I’ve been feeling despairing in relation to my own current circumstances. But things can definitely improve and I have come back from truly terrible places a few times now. So don’t give up and know that things have a way of shifting with a few of the right conditions. That might be something like some help from the pain clinic, spending some time in nature, maybe doing some painting again when you feel ready, chatting on some helplines or here… whatever combination of things that might help to shift your world in a better direction.

Take good care,

ER