Weekly Update – 27/03/2017

Another week has flown by, and as usual there has not been a dull moment here, I may one day get a calm week to write about.

As always I will start off with C, as you know on top of her CFS/ME she also has TMD which basically means her jaw doesn’t work properly and locks and causes her a lot of pain and discomfort.  I rang chasing our consultant early last week, and was told the consultant advised to tell her not to open her jaw too wide, this was like a red rag to a bull and I politely told him she can not open her mouth to talk or eat and can not close it fully due to her jaw locking, we agreed I would speak to him Friday again.  Thursday, I had no choice but to phone to chase she was in a state, I got told there was nothing her consultant could do, but I was given the number of the correct department, so I phoned and spoke to the most helpful and loveliest person ever, she could not find C on the list, but could hear me getting upset and told me not to give up yet and off she went and came back and told me she had found her on the list, but unfortunately could not tell me how long we would have to wait for an appointment, I explained already about the lost referral etc.  I then phoned my GP to see if there was anything else we could do, as C was in a complete state and in so much pain and discomfort, unfortunately, it must have all hit me because as soon as I tried to get words out I could not speak or breath and these uncontrollable sobs just came out, I am so lucky my Mum was in the room as she took over and we were told to ring 111.  In the meantime the lovely lady at the hospital rang and had got C an appointment for this coming Thursday, so I will keep you all updated on how things go.

As I have had the week from hell with C, this is the illest and most pain I have ever seen her in, I was looking forward to a nice Mothers Day, I had made it clear all I wanted was for her to get better, but if she could not do that (our little joke) then a snuggle on the settee watching a film together would be second choice.  My husband was picking up a car in York and S was supposed to be going with him.

So yesterday morning we wake up, and S had not been on any of his apps, and was not picking up when trying to ring him, so instead of me getting a coffee in bed I was up rushing about, telling my Mum I had to go with him and Happy Mothers Day as I presented her with her card and present.  I did not see C as she was still asleep so had to leave Mum to explain.  I did have a lovely day a nice long train ride (on proper trains with proper slamming doors) and then a bit of time at York station which was just how stations used to be, before having a stroll through a beautiful village to pick a car up to drive in hundreds of miles home.  We finally got home just before 9 and I saw C for a bit whilst her meds were kicking in and we had a hot drink together.  Unfortunately, she was really bad and I ended up sitting in with her until she finally fell asleep.

We had our mothers day today, and we have spent a lovely afternoon watching a film and snuggling together, and I got a coffee in bed this morning so that made me very happy.

Only 3 weeks to go now until our holiday, and so much to do before hand, mainly getting C treatment for her mouth, I still have lots to sort before we go and can just see me rushing about at the last minute sorting it all.

I am going to (hopefully) spend this week sorting things out so at least I am a bit more organised, hopefully next week I will say I have at least sorted something out 🙂

How has your week been, hope you had a great Mothers Day, whether you are a Mum or was celebrating with your Mum.


20,171 total views, 1 views today

Thank you for visiting x

Please follow and like us:


  1. Lynne Harper
    28/03/2017 / 5:18 pm

    Gosh poor C and poor you. Us mamas are our kids voices, I’m constantly chasing appointments for my sn boys. I really hope you get a positive appointment and I will be checking back for updates. Hope this week is kinder to you all x

    • admin
      29/03/2017 / 10:38 am

      Thank you, it has been a nightmare and I finally must have reached my limit as I just broke down, it is going to be a struggle getting her up and ready for the appointment but we will get there and hopefully get her the help she needs, it is breaking my heart watching her and driving me mad trying to find things for her to eat x

  2. 29/03/2017 / 9:10 am

    I’m sorry that you didn’t get the Mothers’ Day you expected, I really hope the hospital can do something to ease your daughters jaw pain x

    • admin
      29/03/2017 / 10:33 am

      Thank you, we celebrated a day late so wasn’t totally lost, I am hoping she will get the help she needs x

  3. 29/03/2017 / 3:18 pm

    I’m sorry to hear you’ve had such a frustrating week, happy belated Mother’s Day. Not long to your holiday now 🙂

    • admin
      31/03/2017 / 10:17 am

      It was a hard week, and I got a lovely mothers day a day late and just over 2 weeks to go now 🙂

  4. 30/03/2017 / 8:22 am

    Sorry to hear you didn’t get the Mother’s Day you were expected x

    • admin
      31/03/2017 / 10:12 am

      We had it on Monday instead which was lovely x

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.