“Well, I had no confidence in my ability to dent another human’s life”

Sometimes it’s impossible to even think of a title to a post, let alone which words to use. Being stoned doesn’t help, but it’s the only way I’ve been able to cope today; it was either dope, or masses of co-codamol and a bout of self-harm. I figured weed was the safest option.

Where to begin? It’s past 2am, and I’m still furious from the orthopaedics appointment this morning. As usual, nothing was achieved – my consultant wasn’t even there, and I saw a junior doctor instead, who couldn’t do anything except repeat what I’d already been told at my previous appointment – and I’m furious. I’ve had enough. This officially isn’t fair, and I’ve stood back and let this happen over and over because I haven’t wanted to cause any problems.

Well, fuck that. I’ve been in constant agonising pain for over eighteen months. I can’t walk properly and need a stick most of the time. Ice? I can’t leave the flat if it’s even slightly icy, because I have no balance. I can’t sleep. I can’t exercise. It’s all I can think about, and even strong painkillers (which I’m doing my best to avoid, for obvious reasons) only take the edge off slightly. I’d gladly take back the colocystitis pain over the constant needles and cramps in my foot.

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I got home, and cried. Smoked a joint and ranted to myself for a while. Mentally calculated everything in the flat I could possibly hurt myself with. Considered making myself sick. Ate half an egg sandwich then threw it out. As it is, I haven’t eaten since; I’m hungry, but the gnawing feeling in my stomach is comforting. It’s… control.

I feel very out of control.

Since S came home from work, he’s been cheering me up immensely; so I’m coping okay. I haven’t taken any codeine, or hurt myself. Oh, the urge was there – I thought about it the whole taxi ride home – but you see… if I hurt myself, I hurt S too. It’s strange for me to feel that way, because in past relationships I’ve never truly accepted that my tendency to damage myself could have any effect on my boyfriend. It wasn’t that I was being selfish, it’s just… well, I had no confidence in my ability to dent another human’s life.

I don’t want to hurt S. He’s my world. I know I can’t care about myself, but I adore S. I assume that much is obvious from my past posts.

adore

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I’ve been thinking a lot about where I go from here, and I believe my only option is to put in a formal complaint of medical negligence. As much as I’m tired of fights… I refuse to go on being treated this way. From the first time I saw a consultant for PCOS, right through to today, I’ve had sub-standard medical treatment and every single condition I have has been made worse by lack of action and misdiagnosis. I don’t think any of this is fair, and I’ve got to stand¬† up for myself at some point.

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22 Comments

  1. I’m so sorry to hear that things are so rough. At the same time, major kudos for being willing to stand up for yourself. Certainly from what you’ve written here on this blog, I’d say you have more than enough cause to speak up and demand someone be called to task for what’s been going on. The fact that your doctor wasn’t even there for your appointment but (guessing here) no one told you that is ridiculous. I really hope that you get some action, my dear. Also, so glad you have S. *hugs*

    • *massive hugs right back* No, they hadn’t told me my doctor wouldn’t be there; if they had I’d have simply rearranged the appointment because there really wasn’t much point in my getting a ¬£5 taxi each way to be told, well, nothing.

      I -think- I’m doing the right thing by complaining. Logic says I can’t just be spectacularly unlucky and this must happen to other people. I know the NHS has massive struggles and our hospital is in the process of becoming a foundation trust, but I don’t think that’s a good enough excuse.

      • Exactly right that it isn’t an excuse. Your health shouldn’t be shrugged off or ignored, now or ever. And really, whether it’s happened to others isn’t the point. It’s happening to you and it’s impeding you from the improvements in your health you deserve. That’s enough reason right there in my books. It’s not like you’re asking for gold-plated service. You’re asking them to pay attention, to really try to help you. That’s pretty basic stuff.

        • I think that’s what’s frustrating me; that it’s not as if I’m asking for the moon on a stick. I just expect to receive an adequate service from the NHS. I know it’s struggling, I know there’s no money, and I know the country is pretty skint, but all I wanted was a couple of scans, a few painkillers and maybe a diagnosis. Not exactly top-level stuff. As it is, I’ve diagnosed everything months before the NHS does; it’s never complicated stuff.

          • Here’s what gets me about this idea. If they’d paid attention and diagnosed you correctly in the first place, how many doctor and specialist visits would they have avoided paying for? I mean, if we want to get into healthcare not having enough funding, then look at it from that angle and you realize they’re wasting money. From what I’ve read, you’ve been the rounds with a number of them already, generally with the repeated experience of them not being helpful. That gets expensive for the system, and when they cause it by not actually paying attention to the patient, I’m unsympathetic to said system.

            But none of that is the point, really. It’s that you need help and the system that’s in place to give you that isn’t, despite a lot of painstakingly good faith efforts on your part. Not remotely okay for any reason.

  2. You need to complain for yourself and the rest of the people who are subjected to the same treatment. There is a real chance you will be heard and your action will produce results. It isn’t guaranteed, but it’s worth trying.

    If it doesn’t produce results, you can’t give up, you need a plan B. Maybe it’s a private consult (not sure where the money for that would come from…). You are in control, even if it doesn’t feel like it. You’ve come too far to let this slip away.

  3. First, love from a very early morning in Maine. MAy I observe that you must care for yourself a little, because you did NOT hurt yourself, and you did NOT take heavy duty painkillers, and especially because you are considering your options for getting some satisfaction in your medcal life. I hope you follow through, but even if you don’t, the fact that you wrote this post, these words, is a phenomenal step forward in self-care and self-defense against injustice. I am very proud of you — you are making some good strides, and, if you consider how you felt a year ago, you might see some positive change toward caring for yourself. GOod for you, love!

    • Thank you so much Judith. I wrote this post in a blind frenzy, trying to distract myself from going a bit loopy. It’s weird; I’m much more self-aware now, and can pinpoint the little warning signs which mean I need to pull my socks up. Such as today… I realised I’ve been staying up all night and sleeping during the day. That’s a classic sign I’m heading into a depressive state, so I’ve been making sure I do as many normal things as possible to ground myself. It’s sort of working.

  4. Hugs to you, sweetheart, for not harming you and not hurting S and being able to manage your pain. I feel so very bad for your medical mismanagement and I agree you need to stand up for yourself. No-one deserves this sort of treatment.
    Wishing you strength and sending you love xoxo

  5. Few things upset me as much as improper medical care……..you are right, You need to stand up for yourself and let “them” know this treatment is unacceptable. Good Luck and I hope better days are ahead for you.

  6. Yes. You’ve got to stand up for yourself. Do it while you’ve got the motivation. Don’t talk yourself out of this. You have the right to the correct medical treatment – I mean, that’s the whole point of the NHS existing.

    I repeat: Do not talk yourself out of this, Halfway! You can do this, and you must – you kind of owe it to yourself, and to you and S, and in a way, to your mother – and all the other people in the UK who just put up with whatever is wrong with them because their GP or the specialists can’t work it out and don’t want to work it out.

Send me love.

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