As regular readers will know, C got ill on 31st December 2015, and was finally diagnosed with ME/CFS last year, you will have seen my weekly updates filling you in, mainly about how she had been that week, so I thought I would do a full post, on how it has been, the struggles and how she really is coping with her illness and how it affects us all as a family.
This time last year, C was ill and in pain, and we seemed to be living at the Dr’s and hospital having various blood tests, she struggled with school and could not cope with full days, or weeks. I have to say school were great I never had any of the problems a lot of parents have faced, about attendance or threats of further action.
When C was finally diagnosed, we had meetings with school, to try to get her in but work at her pace, but she could not cope with it, she was obviously so fatigued plus continuous migraine type headaches meant she could not stand loud noise or crowds, and brain fog as she could not concentrate, and then there was the pains in her body, the amount of times we would have to support her or catch her if her legs did not work, we called these times her bambi days.
In July, we had a huge meeting at school with various people, and a 1-2-1 tutor was put in place, and it was agreed that C would go into school for one hour a day, 3 times a week. I felt her going into school and in uniform would give her a bit more of a boost and make her feel a bit more ‘normal’. Her tutor is amazing, she really gets C and now she has worked with her for a while she can tell by her face if she needs a break or if she can carry on, and she has been blown away by her art and has got to see her full character come out, C gets on great with her as well.
It has been such a tough and emotional year for us all, but being a parent it is heartbreaking, your once happy carefree child, is gone she needs me all the time, she is in constant pain, and every day is a battle for her. We had to cancel our holiday last year, as she just was not well enough and we had about 2-3 little trips out for no more than an hour. She speaks to a few friends online, but has not seen her best friend since November, this is the part I find the hardest. If she does go out now it is in a wheelchair and we also have a disability badge for her.
The huge battles we have faced with the medical profession as well, has been awful, I have literally had one battle after another, you get through one brick wall to find 2 more waiting. C now refuses to see her consultant, and I can not blame her after our last visit in November (and yes I am still seething over it), we went in to see him due to how much pain she was in with her legs and head, and also following up a Dr and Dentist appointment regarding her jaw, where he said in front of a 13 year old, about her weight, and a scan on her jaw will give her brain damage. I somehow managed to stay calm for C, and had so much repair work to do after we left. She has always been a skinny girl, but obviously with medication and lack of activity she has put on weight, but is not huge. I think she is ok now.
She has got another condition now with her jaw called TMD, it is basically something that should get better, it is where her jaw bone clicks and locks and goes out of place, which is great fun with her eating.
At the moment, we are in a bit of limbo land she is in so much pain and her legs are getting worse, her head pain is getting worse and her jaw quite frankly makes me feel sick, when I hear it grind or click, but we laugh about it, as we have through all of this. We are waiting to go and see a consultant in London next month, who deals with ME/CFS and we are hoping things will slowly start to improve from then. We just have to struggle through at the moment best we can and take each day as it comes.
She has not managed a full week at school for a long time, last week she managed a proper lesson with a class, but it wiped her out, she managed to go into school on Tuesday but could barely walk through the door and she did her lesson in reception.
It is breaking my heart, and it is tough and although I do not want to be I am very jealous of people living normal lives, as ours has changed totally, we can’t just have days out or pop out on our shopping trips and I see it in her eyes as well.
I am on a fantastic group on Facebook, for parents of children with ME/CFS, and the support on there is amazing and has really helped so much, even just knowing you are not alone, and I have a great friend who lives local who has known C since she was 4 as she was a teacher at her school, her son has it and she has been amazing.
I know this is long and I am sorry, I just had to get it out and also show you all how she really is, but I know my posts have been found by other parents feeling alone and struggling, and wanted to let them know I am here to help, support or talk to.
Thank you for visiting x