The ups and downs of living with a teen

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?

Thank you for visiting x

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    1. 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

  1. 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

    1. 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

  2. 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!

    1. 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

    1. 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

    1. 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

  3. 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!

  4. 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

    1. 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

    1. 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

    1. 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

  5. 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!)

    1. 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

  6. 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!!

    1. 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

  7. 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

    1. 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

    1. 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

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