Goodbye July – Hello August

Wow another month has gone by and I have just realised I have not updated for a while.

We are now in the summer holidays and the school year has ended, unfortunately C has not managed school for a long time now.  I had a meeting a couple of weeks before school finished, and a plan has been put in place for September.  So fingers crossed we can slowly try to get her back into school.

After talking to a lot of parents with children with ME/CFS, I had constant appointments and phone calls with my daughters consultant and our GP, to try to change her medication, as what she was on was no longer working and she was going downhill.  After a lot of brick walls and stress, we managed to get the medication prescribed and it has started to help her, but we still need to do a bit of trial and error with the dosage.

She was also sent for yet more blood tests for Lymes Disease and Vitamin D deficiency.  I have read up about Lymes as it can present symptoms the same as ME/CFS, and if it had been positive it would have been helped by a strong cause of antibiotics.  For the first time ever both myself and my husband were praying for a positive result.  Unfortunately, it came back negative.  She is low on Vitamin D, and has been put on supplements for this, which we were not surprised at.

As school is now out for summer, we agreed that C could dip dye the ends of her hair, and she chose blue, for those who follow me on instagram, would have seen I had a bit of a fight and I started to look like I was turning into a Smurf, but C loves it and I like it.  It also means that she will have no excuse to have a decent cut in September.

We were meant to be going to Cornwall for a few days break, but as C was not up to it and suffering, we decided to cancel going, but as we were renting through a friend have just put it off until she is up to it, so hopefully will get away in the next month or so.

Yesterday, C seemed to be having a okish day, and as her Dad and brother were going out with a couple of my husbands friends, I asked if she felt up to going out and doing something with me and she said yes.  So we had a girls evening out at the cinema followed by Five Guys, although she could not eat all her burger.  She looked so happy and my heart was melting, seeing her doing something ‘normal’ for the first time in ages.  Unfortunately, she has crashed again today, but for a couple of hours she was just like any other 12 year old.

June and July have been very hard months, but finished on such a happy note for us, apart from the crash C is now suffering.

Hopefully, we can have a few happy times in August.

How has your month been? Are you enjoying the summer holidays?

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  1. 31st July 2016 / 7:38 pm

    Aww I am glad you got to do something together and to be fair, I struggle with a five guys burger now and again x

    • admin
      1st August 2016 / 11:29 am

      There burgers are great, she just had a plain cheeseburger so no extras, but I didn’t care as she was so happy to get one and it was so nice just doing something the two of us x

  2. 1st August 2016 / 1:36 pm

    So nice that she was able to get out and do something, nice break and as you said she got to do something normal for a change. I’m glad you’ve got some meds sorted for her 🙂 x

    • admin
      1st August 2016 / 3:21 pm

      Thank you, it was lovely and we were both so happy and had a good chat about all sorts of things as well, hopefully we can do it again soon and a bit more often. Hopefully the meds once the dosage has been adjusted will make a huge difference x

  3. 1st August 2016 / 2:06 pm

    I hope the vitamin D supplements help C to get better soon 🙂 I bet she is feeling pleased that she can have her hair dip dyed – how cool!

    • admin
      1st August 2016 / 3:20 pm

      I am hoping they will help, we will be seeing her consultant in a few weeks so hopefully he will do the tests to see how she is going with the supplements. It does look ok, must get a decent photo of her hair x

  4. 1st August 2016 / 2:30 pm

    Sorry she is struggling. It must be so hard for you all! Good idea about having the ends dipped in exchange for a good cut in a few months. 🙂

    • admin
      1st August 2016 / 3:19 pm

      She hates having her hair cut, so the deal is that she could have the ends dyed but would have to have it cut out, but have a feeling this one may wash out in time, so won’t be the cut I was hoping for x

  5. 1st August 2016 / 7:22 pm

    Woohoo it nearly Autumn. I’m a little sick to death of summer now. I want shorter day and long evening feeling all cosy.

    • admin
      1st August 2016 / 7:33 pm

      I do love the autumn but do love the longer days of summer and warm weather, but not as hot as it was the other week x

  6. 1st August 2016 / 8:10 pm

    Even though she crashed at least you managed to have a nice evening out with your daughter x

    • admin
      2nd August 2016 / 10:17 am

      Exactly how I look at it, her face when we were out made it all worth it x

  7. nicol
    1st August 2016 / 8:44 pm

    glad to hear that there has been a good end to the month youve had apart from the crash. i had five guys today and i swear it brings joy to people!

    • admin
      2nd August 2016 / 10:17 am

      Thank you, it was a great end to the month, apart from the crash she is suffering now. I agree about Five Guys x

  8. 1st August 2016 / 8:49 pm

    Oh bless her, medication can sometimes make symptoms worse and C sounds like she is going through a tough time at the moment. Still she always remains positive and is an inspiration to us all. Hope you are ok too hun xxx

    • admin
      2nd August 2016 / 10:16 am

      The new medication is helping in one way and controlling her head pains, but not her legs, but it is just trial and error and adjusting the dosage amounts. She had a bit of normality on Saturday but has crashed since and suffering. I am fine thank you, hope you are ok too x

  9. 1st August 2016 / 8:56 pm

    I’m glad you had such a great month! I am ready for colder weather, but when it’s cold I want summer. I can never decide! haha! Have a wonderful day!

    xoxo, Candice
    http://www.candicenikeia.com

    • admin
      2nd August 2016 / 10:14 am

      I am the same, never happy it is either too hot and I want the cooler weather, and it is too cold and I want the warmer weather. Looks like it is winter today though x

  10. 1st August 2016 / 10:01 pm

    Ah I hope you do get to go away soon – it must be hard. Pleased that Five Guys was fun though x

    • admin
      2nd August 2016 / 10:13 am

      She has been wanting to go to Five Guys again for a long time, so I could not refuse her request x

  11. 2nd August 2016 / 1:19 am

    It’s definitely nice that we still have plenty of summer to enjoy. I hope you guys are able to do some fun stuff this month!

    • admin
      2nd August 2016 / 10:12 am

      It is more like winter again at the moment, but hopefully the nicer weather will return and we can get out and do something x

  12. 2nd August 2016 / 6:38 am

    I can’t imagine how it must feel to see your own child suffer like that. It must be devastating. She’s so lucky to have such a lovely Mum like you to care for her though. We had a good July – loads of travelling and now back to normal (whatever that is!)

    • admin
      2nd August 2016 / 10:11 am

      It is heartbreaking, she is suffering from our little trip of normality on Saturday :(. Glad you had a good July x

  13. 2nd August 2016 / 4:18 pm

    It sounds like your little one has been through it last month. I don’t know too much about ME but I hope she starts to feel better this month xx

    • admin
      2nd August 2016 / 5:36 pm

      It is a horrible illness, she is suffering from our trip out on Saturday still, but hopefully will start to feel a little better soon x

  14. 3rd August 2016 / 1:02 pm

    My heart breaks when I read your posts about how C has been suffering, but then I am filled with such joy and happiness when you mention things like “your heart melting” at her doing normal things. I wish you and your family love and happiness, and hope August is a better month for you all!!

    • admin
      3rd August 2016 / 3:32 pm

      Aww thank you, seeing her on Saturday just being normal, was amazing, yes she has suffered since but it gave her a little bit of normality for a couple of hours. We are hoping we can do a few more things this month x

  15. Natalia
    3rd August 2016 / 4:29 pm

    I’m really happy to know that your daughter could do a normal life recently. I pray for her and I wish doctors find the correct medication to improve her quality of life (and yours). Oh, and I’m sure the blue color looks really cute on her hair xx

    • admin
      3rd August 2016 / 7:13 pm

      Thank you it was lovely having a bit of fun together like we used to do, and hopefully she will get better one day. The blue does look lovely, will have to try to get a photo of it x

  16. 3rd August 2016 / 8:53 pm

    Aw what a nice update. It is good to hear there is some progress with your daughter, however small. Feel free to come and link this up to my Monthly Loves post on my blog x

    • admin
      4th August 2016 / 10:34 am

      It is lovely and even if it is just a short while, it is so lovely to see her looking happy. I will pop over and have a look x

  17. 4th August 2016 / 11:36 am

    Good to know your daughter had some fun doing normal things even though it wasn’t for long. I hope this month is good for you and your family.

    • admin
      5th August 2016 / 2:46 pm

      Thank you, it was great getting out even if just for a couple of hours x

  18. 4th August 2016 / 4:08 pm

    Lovely update! Thinking of your daughter lovely.
    July flew by didn’t it.

    • admin
      5th August 2016 / 2:44 pm

      July went by very quickly, lets hope August slows down a bit x

  19. 5th August 2016 / 7:31 pm

    I’ve been wanting to go get a burger from 5 guys. I hope you have a lovely August x

    • admin
      6th August 2016 / 10:16 am

      They are the best burgers, we all love them x

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