27 Aug

Hello. Jo here posting for Rosie. She still has blurry vision, although it isn’t as bad as it was yesterday. She is finding it really hard to blog and text, so she’s asked me to do this one.  She’s still drugged up – good in that she is breathing better; bad in that she is sleepy a lot of the time, although not as wierd as yesterday. So after the bank holiday her drugs will be swapped to reduce the side effects. She’s also got a skin infection in her still swollen legs, which is incredibly painful.

All of this means that Rosie is pretty sad tonight, and she wanted you all to know that. Part of her being sad is that she wants to have a life again. Another part is that she doesn’t want to die in her sleep. She’s not ready to die yet.


31 Responses to “Glum”

  1. Michelle August 27, 2011 at 9:46 pm #

    Hi Jo, thanks for posting
    Please say hi to Rosie and tell her it’s okay to be sad sometimes and her reason for sadness is understandable. If I were her, I’d be sad.
    I think she’s doing so well. She is the bravest person I know, facing an uncertain future, especially at her age, cannot be easy.
    And maybe she will have a life again. We don’t know what happens next…
    Love to you all, Team Kilburn you are the BEST! xxxx

    • Deb Walker August 29, 2011 at 10:11 am #

      We can know! x

  2. celia butler August 27, 2011 at 10:10 pm #

    Hello Jo. Anyone would be sad and fed up with all of the things that Rosie is having to deal with. It sounds as though each of the drugs helps one problem but creates another, just a vicious circle really.
    It’s good to know that the blurry vision is at least a little better, rather than worse, and that her breathing is a bit easier. But hoping so much for more than that very soon, for Rosie to get some quality of life back.
    Thinking of you all and wishing for tomorrow to be a better day. x

  3. karen bannister August 27, 2011 at 10:15 pm #

    She shouldn’t be in this place at her age and not surprised she’s sad! I know she doesn’t really know me, but send her my love. My thoughts are with you all. Xx

  4. Lin August 27, 2011 at 10:26 pm #

    Hi Jo.:) Good news that the blurry vision and breathing are better, bastard about the skin infection – been there so know they can be horrible. Sleep is good tho, helps with a lot of things I find:))
    And oh god, shes allowed to feel sad….on the days she doesnt feel so strong we’ll be strong for her. Does she know that since the news, this site has had nearly 74,000 hits? That’s a lot of thoughts and love and lives shes a huge part of….
    Give her my love and a a gentle but tight hug from me, and maybe the chocolate bear to sniff, if hes still chocolatey:)) – or even if he isn’t!
    Vibing for a better day tomorrow and sending love to all of you, and looking forward to seeing you soon xxxxxx

  5. Andrea Clarke August 27, 2011 at 10:33 pm #

    Hi Jo, thank for posting. Rosie I wish i knew what to say. how can i possibly know how you are feeling. all i can say is that there’s an awful lot of love out here for you. your bravery continues to be inspiring.

    i hope that the proposed change in medication will bring some respite.

    you and your family are in my thoughts and i wish you all so much love.


  6. Jilly (beckys aunty) August 27, 2011 at 10:37 pm #

    try to be brave little one, we all wish you better xx

  7. Coz Al August 27, 2011 at 10:57 pm #

    Why does it always have to be a weekend when you want things done, even worse, a bank holiday! Tuesday now can’t come soon enough and a drug change. Side effects suck! Ro I hope tomorrow your vision is less blurry so you can feel more in contact with everyone.
    Love you lots

  8. Claire August 27, 2011 at 11:15 pm #

    Hi Jo-for-Rosie, what a lot to put up with at the moment, no wonder it’s a sad day. i’ve only had morphine a couple of times, the last when i slipped on an icy puddle & broke my leg into 14 bits—spectacular x ray! I remember realising that I could still feel the pain, but I just didn’t care any more, which was interesting. Then I had a night of paranoia, which was horrible, & decided I’d stick to alcohol as my recreational drug. 🙂
    74,000 hugs is pretty impressive, & like everyone else I hope tomorrow is a better day. You’re still gathering recruits to the TKOE cause; a man I know was telling me he didn’t have a computer because he wasn’t interested in anything on it, so I showed him your blog, & what special people he’d been missing. He says he’ll organise a fund raiser at the youth club he runs.
    Actually your hug rating is much much higher than that, I tell at least seven other people about you, & they all send love too, so there must be more like a million thoughts floating around you all. Love , & wishes for a good, easy breathing nights sleep, & a clear tomorrow xxxx

  9. JKS August 27, 2011 at 11:26 pm #

    The grace with which, you, Rosie (and your family) have approached this journey is truly inspirational. You’ve been through so much and you teach us all that it’s o.k. to have good days and bad days, to be happy and sad, to be witty and serious… it’s everything that makes us human! Cheering for you in Baton Rouge, Louisiana

  10. Chris J Dixon August 27, 2011 at 11:32 pm #

    Hi Rosie, Jo, Chris and Toby too,

    So sorry to hear Rosie still has those blurry eyes, but good to hear it is slightly better than yesterday, that shows you are getting the better of this side effect Rosie. Never mind about the not being able to blog or text for now Rosie, Tuesday will see your meds change for the better then you can start again. Good also to hear you are breathing better, that is very important Rosie, less stress on your heart and mind.

    On the legs being infected and swollen, try taking a single garlic capsule a day, it works for me and Bev and it reduces pain in the lower calf muscles, takes about a week to 10 days to work taking one capsule a day but best thing of all is it does not affect your other meds and there is no side effects.

    Rosie, please try not to be sad tonight or any other day sweetheart, you are life itself and you have the hearts and minds of many reading your blog every day and our families following your life too. Yep, I know the feeling you want to have a independent life again, I found out this after my nasty parachute accident after I smashed my body to bit and also as a child up until I was 20 years old with constantly infected eczema with no skin of my hands and no skin on any sweat joints all that time, I missed two thirds of my school years too. We all fight for life in different ways, but really we ourself are the centre of our life not the outside life, it is just how we look and deal with the life itself. We your readers all truly hope you can get through all this Rosie and you can have a better quality of life for a much longer time. Like you, I have never wanted to die in my sleep or whilst under anesthetic whilst on the operation table, which is why I often wake up on the table to the horror of my doctors and theatre staff, lol. Rosie, you decide what you want and then try and achieve your own life goals.

    Rosie, only you can say when your ready to die sweetheart, we each have an internal clock that our soul keeps our physical body running. Fingers crossed you have whatever time you want and you continue to have a good quality of life whilst you want it to be too. I know your Mum Jo and Dad Chris want you to have the best things possible. Always remember Rosie you are in control of your life and your Mum and Dad will help you to have the best quality of life they and your doctors can give, we your thousands of readers are offering you our special healing vibes and thoughts at the same time reminding you we want you to be happy and full of life too.

    Dream happy thoughts Rosie and we are here for you if you want to write or ask questions how we personally deal with things too.

  11. Mike August 28, 2011 at 12:39 am #

    Thanks Jo, for posting this, for keeping us up to date. Tell Rosie we’re thinking of her. I know it isn’t much, that she might feel like she’s holding on by her fingernails with a black hole at her back and no way up, but tell her we’d be up for any sacrifice necessary to make her a ladder, and that she won’t die if she doesn’t want to, no matter what her treacherous body is telling her. And as far as I’m concerned she can’t die. She’s like a footprint on the moon. She’ll be there forever. 

    • Lin August 28, 2011 at 1:04 am #

      Thank you, Mike………..

    • Michelle August 28, 2011 at 7:56 am #

      Great posting Mike.
      Agree with all you’ve said

  12. Darren August 28, 2011 at 5:14 am #

    Love to you all please, pass on my thoughts to a fantastic young lady.

  13. jill Clayton August 28, 2011 at 5:39 am #

    Rosie, you already have 2 lives – one physical, one here in cyberspace. With Eshaness in charge, all us cat owners are working on transferring a few of their extra lives to your physical one. (Eshaness is not expected to part with any lives herself! )
    You’ll know it’s starting to work when the side-effects diminish and you start licking your paws. Love, Jill

    • Michelle August 28, 2011 at 8:01 am #

      Eshaness has been up and about all night vibing (and annoying me and himself) and sending HUGE loves to her ertswhile namesake Rosie (she was originally a Rosie). She says meiow, meioooooooooeiewwwww, yiow, owoowwwww, meieiooow – roughly translated – Darling Rosie, I’ve been on my last legs too, but my other lives have kicked in. I’m donating a life to you. I’ve called out to all my catty friends on the cat pawtal to help. We will do all we can. hang on in there love. Much purrs. Eshaness.

  14. robin August 28, 2011 at 5:59 am #

    Rosie im so sorry you are sad and so sorry that i cant read and keep up to date with your blog everyday like before, im staying on a farm in sweden with no internet, but only for another few weeks, then il be back, and by then im sure you will be back to your old self a bit more too.

    Please stay alive and please know that Im thinking of you, its not just something im saying, I really am, and more than I thought i would.

    I take you everywhere with me in many ways, you are still my hero, and I still tell people about you and how incredible you are. I still use you to keep things in perspective and keep positive no matter what.

    Good luck Rosie, il catch up next weekend again, I hope so much that its better news.

    Love Robin x x x x

  15. Maz August 28, 2011 at 7:27 am #

    Sorry you are feeling sad. Remember the message Sue passed on for me. Know how much of a difference you have made and keep that thought. Life isnt fun here either at the mo, but our thoughts and love are with you and the family xx

  16. margaret crisp August 28, 2011 at 7:45 am #

    Hi Rosie, and thanks to you, Jo, for posting when you’ve got such a lot to do and see to yourself!! A new dawn and hopefully a better day today…and it’ll soon be Tuesday which will see the change of drugs and hopefully less side effects for Rosie.
    Thinking of you all lots, love mags.

  17. kath August 28, 2011 at 9:46 am #

    Sending love and positive thoughts. x

  18. Natalie Bones August 28, 2011 at 10:14 am #

    Rosie you have every right to be sad. We can’t be happy all of the time!!! Your positivity is very inspiring, but it’s OK to have a down day. Lots of love xxxxx

  19. Chloe Taylor-Jones August 28, 2011 at 10:36 am #

    You’re always so brave Rosie and everyone admires that, and when you are feeling sad remember there are so many people who love you and it’s fine to be sad and everyone will still be here to support you. I have sent you some post hopefully someone will read it out to you if your eyes are still blurry xxx (I forgot it is a bank holiday so it probably won’t arrive until next week) xxx lots of love Chloe xxx

  20. Helen & Harrie August 28, 2011 at 11:34 am #

    Rosie don’t worry if ure not up to posting, we all understand, but Thanks to Jo for being a super mum and blogging on ure behalf. You seem to go from one challenge to another and you always find that inner strength. And don’t worry, you are allowed to feel sad and a lttle down, my goodness you are having to deal with soooooooooo much. You are an amazing young lady with a terrific network of family and friends that will help you do what you want to do. I am glad your vision has slightly improved and once your meds are changed next week you will hopefully feel alot better. Our love to you all xxx

  21. barbara August 28, 2011 at 3:41 pm #

    Thanks to Jo for posting about Rosie.I feel so useless not being able to do anything.I’m just thinking about you all,all the time.Sending lots of love.Hang in there Rosie and hope things get better tomorrow.

  22. carol lewis August 28, 2011 at 4:12 pm #

    I know it must be very difficult to be positive Rosie but please try, I can not imagine how hard it must feel that you are going to die but if you stay positive & we all think positive things will get better, don’t forget we are all a part of Team Kilburn & we will fight with you.

  23. busybusybeejay August 28, 2011 at 4:27 pm #

    I have already posted a comment but wanted to pass on some thoughts I read in a book a while ago.It is a belief held my many African societies.The belief is that you never really die until every last person that knew you has died because you live on in peoples thoughts and minds.I totally believe this and think it is a very comforting thought.

    • Michelle August 28, 2011 at 7:40 pm #

      What a great thought. I always believe that my Dad is alive to me as he’s forever in my heart and in my mind. Similar eh!

  24. Di (Ms Harrill) August 28, 2011 at 4:27 pm #

    Dear, dear Rosie –
    so sorry you’re feeling low and sad – that’s ok – there’s nothing wrong in feeling like that – feeling sad makes us more aware of the better times – it gives us contrast to our emotions – that’s my theory anyway! We have to have lows in order to appreciate the highs. I’m hoping with all my heart that tomorrow wiil be a better day for you – and the next day and the next…
    You’re in my thoughts – every day – my picture I bought at your auction is a constant reminder of you and your spirit.
    Take care
    Ms H

  25. Pip Armstrong August 28, 2011 at 4:38 pm #

    Sounds like a really horrible day for you all, let’s hope they come and sort out the drugs without further ado because the last thing poor Rosie needs is to feel worse from side effscts when they’re supposed to be making her more comfortable …. no wonder she’s feeling so down 😦
    Will ring you in the morning to see how things are and hopefully will pop over for a cup of tea mid afternoon, not as my dipstick husband suggested for lunch, I’m sure that’s all you need to have a load of extra mouths to feed just at the moment ut men!
    Pip x

  26. Alison August 29, 2011 at 9:34 am #

    I wish I were a glow worm
    A glow worm’s never glum
    Cos how can you be glum
    When the sun shines out your bum?

    Ali xx

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