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  1. Jean

    Just be glad your family members don’t understand–the only way they could understand would be if they were that ill, too. People thinking “If she only tried harder, she could [whatever]” is a form of hope, I suppose.

    • Anne Sweet

      that is something I’m always grateful for, and knowing that my condition is not genetic helps. You are right about the hope, my family still hope that I will recover. I have hidden some facts from them and what I have is so rare they can’t find out unless they talk to my consultant. So, I know I’m partly to blame for their not fully understanding. x

  2. Jenny @thebrickcastle

    I get up every day and I am still an adult who was responsible for a child who died. I failed. Every day I start the day and I have already failed. I put on my cheery face and go and do that shit because you don’t have a choice, but I know I am doing okay. I know I pick other people up and drag them too, because I am doing okay and helping other people do okay makes me feel useful. Some days I just want to sleep, I don’t want to get up and I sure as dammit don’t want to carry anyone else, but mostly. I am winning. My pain is all mental. You have lost so much, it’s been stolen from you and it isn’t fair. In no way is it fair, and when you’ve got past the mental hurdles, your body won’t even let you try properly. It is exhausted and painful and omg I regret so badly the automatic hug I tried to give you at that LEGO Show. Your pain is physical and mental. I don’t care what grumpy posts you write, if you carry on because you have to or anything else. You do it and that makes you a superhero to me.
    Nice choice of music btw x

    • Anne Sweet

      I wish I had the strength to pick up my family too, for that, and for carrying on, I admire you Jenny. Oh and hugs are always welcome, even if they hurt. I get them quite regular from my kids, thank goodness. Even my eldest son, 6ft and big built, He is always grabbing me in a bear hug. These are the things I live for. xx

  3. Angela Webster

    Nothing I can type would sound right or even be of any help but I didn’t want to read an leave no comment either. Life is so unfair sometimes and the fact that other people might have it worse is not relevant, this is your experience, your pain and I think it’s hard for anyone to imagine slightly the daily pain you must be in. I’m sorry that your family don’t fully realise how poorly you are, do they perhaps not want to face up to the reality of your illness ? As mums we become experts in putting on a brave face and not showing how we are truly feeling or hurting. Thinking of you xx

    • Anne Sweet

      Thank you Angela. It wasn’t until publishing this post that I realised that people may find it a difficult one to comment on. I did want people to have a slight understanding of chronic pain though. I think you are right about my family, it’s not that they are not understanding, they just don’t want to face up to it. xx

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