My Week – 26/03/16

Another week has passed and time again for my weekly update.  This week has been full of firsts for me.

I will start with an update on my Daughter for all those following how she is doing, she is no better, I have spent the week trying to speak to her Consultant with no joy.  Our GP decided to refer her to CAHMS and I spoke to them on Monday, but she said they probably couldn’t help after I described about her illness and what we wanted, but do have a telephone appointment and a face to face appointment booked in case.  My Daughter had her first physio appointment on Thursday morning, as parking is a nightmare, I dropped my Daughter and Husband at the doors so she didn’t have too far to go and picked them up after the appointment.  Although formal diagnosis has not been made yet, her hospital notes are saying different, so it does look as if she has ME.

As I could not get to sleep Wednesday evening, I found myself at 2am Thursday morning emailing into her school again, and spoke to them on Thursday.  They can not put any plan in place to help with her education until they have a letter confirming formal diagnosis.  So I am stuck with what to do.  As she can not cope with school or getting around, but they can not do anything much either.  I did say about wanting her in school and maybe doing lunchbreak as well so she can socialise as well.  am speaking to them again after Easter to see where we go.

She had a friend for a sleepover last night and it was lovely to hear chat and laughter, you could see in her face the pain and tiredness but she fought it so hard.

I have had a few firsts this week, I posted the other day about something I never thought I would say, and that was enjoying cleaning,  I spent the afternoon cleaning my Daughters bedroom, stopping to chat and do some puzzles and we had so much fun, that I actually enjoyed myself.  The rest of the housework I have been doing I have not enjoyed at all, so it didn’t last long.

The other thing I have done that everyone who knows me knows I do not get involved with this at all, is gardening.  I just hate the mud, the dirt and pointless weeding.  But I painted the garden fence, and am really pleased with how lovely it looks.  I potted some plants into tubs, sorted out our herbs and it is all starting to look lovely now.  I just need to keep everything alive now.

I am also thrown with the days this weekend, yesterday I thought it was Saturday and today I think it is Sunday, I know I am not alone in this though, as everyone seems to be finding it the same.

Hope you have all had a good week and enjoy the Easter Weekend x

 

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  1. Astrid
    26th March 2016 / 6:54 pm

    I’m so sorry your daughter is no better. It’s so sad that there’s nothing the school can do and CAMHS may be useless too. Isn’t there a specialized treatment center for medically-unexplained/psychosomatic syptoms like hers? I mean she has possible ME right, which in the Netherlads is treated as a psychosomatic illness, where people get cognitive-behavioral therapy to cope with their symptoms and, if possible, exercise to help them get more active. I know many ME sufferers despise the Dutch program (which they say is based on the idea that ME isn’t physical), but the fact is there is no physical treatment so she might benefit from psychosomatic physical therapy, counseling on how to cope wiht pain, etc. You are probably already involved with uK-based ME support groups, so I’m assuming they would’ve advised you about treatment possiblities if they could. I am so sorry your daughte ris now without much hope for improvement.

    • admin
      26th March 2016 / 7:37 pm

      Until she is given a formal diagnosis we can not get any help with anything else, from research I have done there is help like you have in the Netherlands. There is no cure for ME but you can learn to live with the symptoms. Am hoping now physio has started that will be a huge help to her x

  2. 26th March 2016 / 7:22 pm

    Aw what a lovely week it sounds like you have had. I’m all mixed up on days as well. So confusing haha.

    • admin
      26th March 2016 / 7:33 pm

      It has been busy and very different for me, I was convinced it was Sunday today x

    • admin
      26th March 2016 / 8:51 pm

      I have been busy this week, and doing things I never thought I would say. Thank you x

    • admin
      27th March 2016 / 12:13 pm

      Thank you, she is walking a bit better now which is a huge improvement x

  3. 26th March 2016 / 8:52 pm

    Gosh. What a week. Highs and lows for sure. I do hope you get something ‘formal’ for your daughter. I’m going through something simulate with my youngest but yet to blog about it thanks to the sheer lack of answers and help from several different departments and consultants. Until you know for sure it’s like being stuck in limbo land isn’t it x

    • 26th March 2016 / 8:53 pm

      Similar not simulate. Bloomin autocorrect!

    • admin
      27th March 2016 / 12:13 pm

      I am sorry to hear you are going through similar, but it is so nice that someone understands exactly how I feel, you are in limbo land and a brick wall in front of you. Hope things start to improve for you soon x

  4. 27th March 2016 / 6:17 am

    Sounds like a very busy week! I too cleaned my eldest’s bedroom this week, a much needed thing!

    • admin
      27th March 2016 / 12:06 pm

      It is one of those jobs we hate to do but needs doing

  5. Jessica
    27th March 2016 / 7:49 am

    I hope your daughter feels better soon, it must be such a difficult time for you both.

    • admin
      27th March 2016 / 12:05 pm

      Thank you, hopefully things will get easier x

  6. tracey bowden
    28th March 2016 / 7:38 pm

    You enjoyed cleaning? You will have to tell me how I am still yet to enjoy it at all! It sounds like a sleepover was great for your daughter and I really hope you manage to get something in place soon to help her

    • admin
      29th March 2016 / 6:14 pm

      Yes for that split second I actually enjoyed cleaning, there is a first for everything though, I really can’t see it happening again though. She loved her sleepover but has suffered ever since. And thank you hit more brick walls today though.

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