Weekly Update -25/02/2017

Another week has passed already, so that means one thing and time for my weekly update, and what a week it has been, it has been a right old rollercoaster ride.

I will start off with C, she has been pretty much the same this week, and needed to be around, last Saturday just coming downstairs knocked her out.  We finally had her hospital appointment on Wednesday, we had a nightmare journey getting there and she did so well. The hospital was lovely and so were all the staff, we did not see the consultant and saw someone else.  The appointment was an hour long, and very intense, she asked us everything you could possibly think of asking and more.  Poor C halfway through was yawning and really struggling, I did apologise but she was lovely and said she is used to it.  At the end of the appointment, she confirmed that C has severe CFS, she has increased her medication and is writing to everyone who needs to know, including school, as her letter will also state about exams as and when she needs to do them. We need to go back in 3 months for a review.  It was the first time since she has been ill, that we came out of an appointment and felt positive, and hopeful and that we had been listened too.

S on the other hand, has been a nightmare, he dropped a huge bombshell on us last weekend, which I am not ready to talk about just yet.  I am fed up however, of the total destruction he leaves behind him, we went out on Thursday (more about that later), and there was a slight cross over with us going out and him coming in from work, I made a lasagne for him and C, fed her before we went out and left his along with some other things I had made that day.   C was fine and settled.  We came in and my nice clean kitchen was a complete mess, all he had to do was heat his up, he had also cooked something else and my cooker was disgusting, pans left out dirty, and my sides dirty.  I swear he thinks I am just his personal maid.

Thursday night (as just mentioned) I was invited, along with my husband to a launch night of a new bar and restaurant, I will write a separate post about it, but we had a much needed, great night out.

On another happy topic, my new sofa finally arrive and is so comfortable, and fits perfectly in my lounge.

And finally two photos from my Facebook memories, which are two of my most favourite photos

As I said at the start, it has been a real rollercoaster week, I hope your week has been a good one for you.

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54 thoughts on “Weekly Update -25/02/2017

  1. Lynne Harper

    Glad that you feel your getting listened to with C’s condition. It so hard fighting for our children, we are their voice. Hopefully, things will settle with S and the week ahead will be a kinder one x

    1. admin

      It is a relief, but finally feel we are gettng the help and support she needs now. I can’t see that happening x

  2. That does sound like a roller coaster week! But glad your appointment with C went well x

    1. admin

      It certainly was, but such a relief with C’s appointment x

  3. I”m so sorry it has been such a rollercoaster week for you, but happy to hear that C’s appointment went well and you finally feel like someone is hearing you regarding her condition. I do hope that things with S will turn around soon and that you at least had a good night out before you came home to destruction in your kitchen x

    1. admin

      It was a nightmare week with S, still no better really. It was such a great feeling after Cs appointment and feeling positive, even my friend said today I look a lot happier about it. My kitchen was a complete shock, when I thought I had sorted his food out and he just needed to heat it up x

  4. I’m sorry it’s been a hard week. Good job you got a much needed night out x

    1. admin

      We needed the night out, but at least we got some great positives with C x

  5. I had a generally dull week. Hope things settle down for you, but have a lot of positives too 🙂 must be nice to see opening of new bar and restaurant

    1. admin

      The opening of the new bar was amazing, such a great night, I wll do a right up in the next few days x

  6. Sounds like a bit of a week! Hope the bombshell isn’t too hard to deal with – Congrats on the new sofa! See you next week

    1. admin

      It was a very tiring week, thankfully the new sofa helps us to relax, the bombshell is still ticking x

  7. What a week to remember (or maybe forget) for you. It’s great that you keep a record of what happened so you can look back in years to come and see how far you have come

    1. admin

      It was certainly a week of fireworks, looking the same this week x

  8. That does sound like a full on week. Great that your daughter felt listened to at the appointment. My sister has CFS when she was at school and went to therapy sessions but it just seemed to clear up on its own.

    1. admin

      It certainly was a full on week. CFS has varying levels and affects sufferers in different ways, but I do love to hear things like this x

  9. Sorry to hear that you have had a hard week and also that C has severe CFS although at least a confirmation can help in terms of telling the school as they can be funny about children taking time off.

    1. admin

      It is a relief to have someone understand, she was already diagnosed with cfs just not severe. I have to say school have been amazing, even before the diagnosis they were understanding and could see she wasn’t well, and since diagnosis they have been great and worked with us instead of pushing x

  10. Sorry to hear that the CFS is severe but it must feel like a relief to finally have been listened to for once! Look forward to hearing about the restaurant x

    1. admin

      If I am honest hearing the word severe stung but also was a relief, my friends son was diagnosed as severe (he has had this for 4 years) and is doing so much better these days, so I know with the right help and support we will hopefully get there x

  11. What a rollercoaster of a week for u. Good to know thst u are getting somewhere with C and her condition.

    1. admin

      It was a rollercoaster, but at least things with C are going in the right direction x

  12. Sounds like you’ve had a bad week. Sending good vibes from Los Angeles!

    1. admin

      Thank you, and how lucky are you to be in Los Angeles x

  13. I’m glad you felt positive after the appointment that’s such a huge thing x

    1. admin

      Thank you, stll a lot to take on board and a long battle ahead, but to have support and understanding is a huge thing x

  14. Dannii

    I’m so sorry that you are going through this. But I am glad that you came out of the appointment feeling positive at least.

    1. admin

      I won’t like it has been hard, but times when you do get someone actually understand and listen it really does help. I know those also going through this need to see positive outcomes as well, hopefully things will improve slowly and steadily x

  15. How great that she has a diagnosis now which makes understanding her condition easier for everyone involved in her life.

    1. admin

      She as diagnosed a year ago, the severe bit is new though, it has been an ongoing struggle to get supportive care though, as with this illness, a lot of professionals think it is all made up and in the sufferers head. Some of the stories I hear is truly heartbreaking x

  16. I do hope for her fast recovery. Good thing that you are now on the way to her medications. I know it’s much harder for you to see a sick child.

    1. admin

      Thank you, we are over a year into this and first time we have felt a bit more positive, the increase in her medication has affected her and she is still getting used to the higher dose. It is heartbreaking watching her suffer and know I can not make it any better x

  17. That really does sound like a tough week, but it must be such a relief to feel like you’re getting somewhere after your appointment. I think your night out came at just the right time!

    1. admin

      It was a tough week, but the appointment did make things seem a brighter and was so lovely to come out feeling positive. The night out did come at the right time x

  18. Gosh it sounds like you’ve been through the ringer this week. Hope your daughter stays well and that everything works out for you. IT must be tough to watch her in pain

    1. admin

      It has been a right rollercoaster, she is still struggling but hopefully will start to improve soon, it breaks my heart every day 🙁 watching her now to how she was 2 years ago x

  19. francesca

    Awwh hope you have a better week this week! Sorry to hear you’ve had a bit of a nightmare time, I imagine it was quite stressful! However glad to hear that the sofa turning up was a positive and those photos are beautiful!!!

    1. admin

      Thank you, hopefully will settle down soon, am loving my new sofa and thank you they are two of my favourites, I have them on my wall x

  20. That sounds like a crazy week, I hope everything goes well this week x

    1. admin

      It was a crazy week, pretty much the same this week as well x

  21. As they say, life is a rollercoaster. Glad to hear you had a great night out and that you like your new sofa! 🙂

    1. admin

      It certainly is at the moment, hopefully will start to settle down again soon x

  22. Lovely to hear that you’ve come away with a positive vibe from your hospital appointment. It makes things so much easier when we feel we’re being listened to , especially when it regards our children xxx

    1. admin

      It was a relief, and when it comes to our children we will fight all the way until we get heard x

  23. Im sorry to hear that your daughters diagnosis came back as severe. I remember when you all first got the diagnosis and it was a relief to know what you were needing to deal with but I imagine that this brings it back. I hope she starts to improve soon xxx

    1. admin

      Thank you, it was quite a shock when she said she agrees with the cfs diagnosis and explained why I was ok, but when she said she is severe it did sting a bit, but also a relief as well as she will get the help now she needs, she is really bad at the moment but hopefully that will improve x

  24. I’m sorry you have had a difficult week! Hopefully things will be looking it up! L x

    1. admin

      Thank you, it is a bit better this week x

  25. Angela Key Milnes

    We are on the same situation and it looks like a roller coaster week for me too! I wish I can be good for this coming week.

    1. admin

      Am sorry to hear you are having a rough week as well, I hope you are ok this week x

  26. nicol

    sorry about the rough week 🙂 hope it gets better! also, hope those two photos had brighten you up a bit too 🙂

    1. admin

      Thank you, those photos are two of my most favourite photos of C, I have them on my wall blown up x

  27. Oh I really hope things pick up for your daughter soon – She sounds like such a trooper. Every time I visit your blog I really hope to read that she has had a good week. Take Care.

    1. admin

      I hope she does too, unfortunately last week was pretty much the same as the week before, one day I will say she has had a better week x

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