Scared to live and scared to die. Yes, I can certainly see that. Me too. Its awful.
Believe me, I can relate. People don't get that you reach this situation ONLY because you've tried
everything else countless times and all the promises of help don't materialise. 'There is help out there.' No, not always. There are empty promises of help out there, certainly. Once they've made the promise they feel their job is done and they can move on.
You went to the cinema! Obvious you are still desperately trying, even though its all stacked against you. If you decide you want to fight on, all you can do is try to out-think and out manoeuvre any who would stand in your way, to be relentless and keep on at them. This is THE hardest thing to do because you are at your weakest and alone against an impenetrable system full of fake hope. If you can do this then that is a mark of real courage.
Yeah, my life is appointments too, then recovering, they don't realise that some diagnostics are actually harmful and traumatic. It is exhausting and just makes you want to give up.
All of this! Thank you, you get it!
I have called doctors numerous times, written to them, contacted PALS, fighting to get even basic medication that my consultant told my doctor to prescribe seems impossible. And as you say, fighting when you're already weak and unwell can be too hard. I've been fighting for one basic drug since June last year when my consultant wrote to my doctor asking him to prescribe. When I went to the doctor he pulled the letter up on the screen so I know he's had it, but since then he's denied having that letter. Even after a formal diagnosis they still won't help me. If diagnosis doesn't even push them to help, what will? Nothing.
I feel like I'm treated like a hypochondriac or drug seeker despite having had a heart attack and coronary dissection and despite formal diagnosis and despite the fact that the drugs I'm asking for can't give any kind of a high and can be bought over the counter (only sell in packets of 8 and I need 20 a day).
The pharmacy refuse to reorder my repeats that don't come in a dosset box so expect me to go to my doctors surgery weekly to reorder and pick up myself from the surgery and then get the dosset box from them separately every week when I'm shattered and can barely stand up after a week full of appointments and travelling.
The pharmacy talk to my personal assistant like dirt and even when I finally get a prescription from the doctors for the medication at 20 a day (once in a blue moon), they refuse to dispense them, telling her that's too many and I shouldn't be taking that many, even though my consultant has said to take that many and the gp prescribed that many.
The medication is to stop the chronic diarrhea or at least slow it down. They constantly quiz her as to who she is and why I'm not collecting the medication myself (well because I'm exhausted from no sleep, lots of appointments and having constant diarrhea, being dehydrated and my electrolytes being out of whack! Maybe if they gave me my medication I would feel well enough to go to the pharmacy myself!)
I feel like they all want me to end my life as I'm too much of a financial burden on the state and that's why they are being so obstructive.
I feel like adult care services and children's care services are doing the same, trying to push me over the edge, maybe that's paranoia but it feels like it.
When I moved here as high medical priority I told them I needed practical support for the move, unable to do it all by myself and they refused any help and then took my children when I was unable to do it all.
The chronically sick and disabled persons act 1970 puts a legal duty on social services to provide the help needed so that my children remain at home, yet I was outright refused and then they took them causing further harm to me and them.
I have been fighting to have them returned ever since and fought to get that help needed in order to make that happen but just always faced with walls in front of me preventing me from getting help in entitled to which they themselves have admitted I'm entitled to yet isn't forthcoming.
I told myself I would keep fighting until the final hearing so at least I and they knew I tried right up until no hope was left, but the closer that date gets still with no help in sight, the more hope I lose of their return. I watch them struggle separated in the care system telling me it's been too long and they want to come home, I wouldn't mind as much if they had been placed together or if we had family to have them, but this is torturous.
I feel helpless, I feel like I have failed as a mother and a human being, I feel that my life was wasted, all my dreams taken a long time ago and all I had left was to make my children's lives better than my own and even that was taken away. I feel that without them, there's nothing at all left as a reason to continue to tolerate the never ending suffering.
Yes I have continued to fight, to try to change things, to build positive events and a reason to live despite all the suffering, to try to maintain friendships, to be love, to plan for a future I can't imagine happening. Every day doing something toward that impossible future. Only yesterday I still bought a mindfulness journal, I continue to try to practice wellbeing and self care skills like somehow it can make a difference. I continue going to therapy even though it feels like additional hell reliving all the trauma but waiting for that breakthrough moment that all that falls away because I faced it and come through the other side but it escapes me.
I continue to run a non profit organisation and help others (for a sense of meaning and purpose) I still tell myself daily affirmations but I don't believe them anymore.
I am burnt out through how hard I have tried to change my mindset, how hard I worked to give myself a reason to tolerate the suffering and pain, how hard I have fought to get the help I need, how hard I work at self care and getting to appointments for treatment and diagnostics, how hard I have worked to get the house sorted. Even maintaining a wellbeing regime is exhausting (washing, eating, drinking).
All without help, all alone. I reached out, people know how low I am feeling right now, they know I bought the SN (though don't know I've attempted to use it) (friends, doctors, nurse, social services, therapist) yet I'm still here running on a hamster wheel and sucked into a void.
They say we can only help ourselves, only save ourselves, but it seems to be an excuse to remove self accountability. I don't mean my friends when I say that but professionals. I know they can only do so much but when they do nothing and there are basic care needs being neglected by the professionals then what am I meant to do? If I can't afford to pay for a carer myself and I can't afford the 20 a day otc medication and I'm being forced into therapy that I have to self fund...
I've run out of options and ways to improve my quality of life. I can't see any light at the end of a dark tunnel, I lost all hope, all dreams, helpless and hopeless, beyond my own control.
And since starting therapy the flashbacks are rolling in too making me feel unsafe all the time, like I don't need to worry about someone breaking into my home or going out and having something bad happen because it all happens right here even when I lock myself away from the world. It might not be 'real' but it was real and it still feels real when the flashbacks occur, the full body sensations my nerve endings can feel, feel real, the things I see, look real, the taste, smell... All appear real in the now regardless of whether they ended a long time ago.
And the emotions they invoke are certainly real. Haunted by the memories, haunted by ghosts of those who are still living, by what they did.
Full traumatic living each day feels like new traumas. Ongoing trauma.
Sorry :(
