11 comments on “120 HOURS

  1. Hi julia. Im very sorry youve had such a tough time with the nhs lately and I like you am sick of the one-size-fits-none ethos they seem to have. I was wondering as you mentooned your recent health ordeals and that you would be visiting a chiropractor. Have you ever seen a traditional Chinese medicine acupuncturist. Their view is to treat you holistically hopefully easy your pain, the psychotic episodes decreasing cortisol levels which can reduce stress and ease responses to triggers as well as help with sensory deficots and attention/memory. I myself have aspergers and have a 14 year old with pda and acupuncture has helped us. Of course not available on the nhs unless you go to their nhs trained acupuncturists (which I wouldnt recommend to my dog. Usually they do a weekend course in acupuncture) I use a tcm practitioner with athree year degree at uuniversity in acupuncture minimum. Worth a try anyway. Hope things improve. X

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  2. I hope that you are having a better day today hun and that your mind and body are receiving some rest and recuperation. Hopefully getting everything of your chest, out of your mind and into words will help you feel better. I always find that honest, blunt and truthful writing does me the world of good. It is also so important that others hear your stories, your perspectives and how, as an adult, the ignorance of the NT world continues to affect you. I am trying to help Mollie understand the NT world so that she can successfully navigate it but when oh when will the NT world take the time to understand the ASD/PDA world. We are such a minority it is so hard to get anyone to listen. That’s why the more people that write, share and get information out there the better. You have written, yet again, another fabulous post that helps us see life through your eyes with even more clarity. Keep up the good work, hopefully together we can make a difference.

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    • Jane I feel so much better now I’ve purged my soul, as it were. I’m a little worried that some might find this post a little too honest. I hope I don’t upset anyone. :/ It was surprisingly easy to write but was very painful too. Lots of feelings that I would rather not have relived so soon after feeling them came up but I think it’s done me good. I’m glad that it’s helping you Jane. 🙂 All I want is to help, to educate and to breakdown some of barriers that the NT world have put in our way. :p I love the fact the Mollie is a child making an effort to learn how to exist in the NT world and yet the adult muppets out there can’t be bothered to do the same for her in return. 😦 This is so sad. History cannot be allowed to repeat itself. 😦 All this crap I continue to go through will be 100% worth it if I can stop it from happening to Mollie and the others. 🙂

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      • Julia, it’s not the purpose of your blog to make people happy, leaving them with warm fuzzies. It’s to impart awareness and understanding. Your honesty is just what is needed. Your honesty is BeAuTiFuL!!!

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        • Aw thanks Klara. 🙂 That means a lot. I guess I’m just worried that if I upset people then I might end up alienating them and that’s the last thing I want to do.

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  3. Julia, this is not a whinge or a moan, or self pity. This is a crap 120 hours of rubbish NHS and a real insight into how bad it can be for a person with PDA.
    This is one of the reasons I don’t want to message you when I struggle, you have enough going on, more than enough. I think stress does make mental health issues worse, and the staff at the appointments seem to have not only screwed up the appointments themselves but also left you feeling vulnerable and in pain.

    I really hope you can get this sorted and they get to the bottom of your pain xx

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    • Ah you see hun, contrary to popular belief you can have PDA and bucket loads of empathy. I am never too stressed or busy for friends. You are a friend. You have helped me so I want to return the favour. I am one of those people who needs to be kept busy. I cannot cope if I wallow for too long a period, otherwise it swallows me whole. I am here for you and I can cope with what ever help and support my friends need. Please do not worry about me. I bounce back and I’m capable of carrying great loads before I struggle. Also what is the point of me going through all this if it isn’t to help others? I couldn’t cope if I thought my life was this way for nothing. Helping is what keeps me going. X

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      • I know, but I still find that it is possible to be overloaded.
        You do help others even when they don’t message you. Writing your blog, answering blog posts and group posts, are a help to loads of people.

        X

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        • Aw Klara, you’re going to make me blush if you carry on! 🙂 Thank you so much. ❤ I don't think of myself as a leader but one of the PDA army. We all need to stand together. 🙂

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