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?