I wrote a post yesterday about ME/CFS Awareness Week, and shared a video taken from the ME Associations website, which really shows what it is like living with ME/CFS. Today I am going to write a post about what it is like living with a child who is suffering with this chronic illness.
My Daughter is 12, up until New Years Eve, she was just like any other child of her age, she went to school, met up with friends to go shopping on a Saturday or met up in the school holidays. We had just started letting her out on her own and she was loving it.
Then on New Years Eve our life changed dramatically, she became ill , she became very tired, constant headaches, pains in her legs and trouble walking. At first we thought it was a bug, but it did not get better, we had numerous trips to the Dr and finally Consultant who has been great in her care.
At the start we had daily struggles with school, she loved school and tried so hard to go in, but it was really hard for her, they kept trying to get her into school, or if she was in she would spend most of the time in the medical room, which was not helping her at all. We had meetings the the Deputy Head, Attendance Officer and Welfare Officer. Luckily they understood that it was an illness and not her just not wanting to come to school. I have even been in tears in school with frustration, of not knowing what was wrong with her, and seeing her in so much pain and so unwell. When we finally got the diagnosis through and the school received their letter, I was in school for a meeting to discuss her going back, although I had found out unofficially the week before, I saw in black and white for the first time her diagnosis in that meeting. Things changed dramatically that day, and they are being great and taking each day at a time.
I have had to face negative comments from friends and family, she is just being lazy, you need to get her up and walking about, she needs to be in school, the list goes on. It was hard, at times even I doubted whether she was making it up, although I never told her this and never will, as something in me knew that she was not lying. I have become very protective over her now, and cut any negative comments down straight away. She needs support, she needs positive comments. The picture above was taken today, as you will see she looks normal and was not suffering too much with tiredness, an hour later she looked worn out.
My Daughter, has been a star throughout all this, we have had the tears and the down times, I have sat with her when she has been breaking her little heart because she couldn’t walk, or because she feels so tired and worn out, has no energy, can not go out with her friends, have a girlie day out with me. I have held her and fought back my own tears to be strong for her. On her better days, she has her sense of humour and her spark and she just goes with the flow.
For myself and my husband, it has been hard fighting with school, fighting for help with her pain, I have cried so many tears, of frustration, and helplessness as I couldn’t give her a cuddle and tell her she would be better soon. I have stood in the middle of a room holding her weight as she couldn’t walk, I help her steady herself, picked her up off the floor. I have even begged to make her better and let me be ill in her place.
I was not sure how she would take the diagnosis, but she took it well, we had sort of prepared her for it, so it was not a huge shock. We have our bambi days, which are her really bad days where her legs just wont work or she is in so much pain she just can not walk, and we have our not so bad days. She gets worn out very easily and we have to plan her rest if we go out or do anything. We do not know how long she will suffer for, it could be a few more days, weeks, months or years. But we look on the positives, never the negatives, if she is having a bambi day, we laugh about it, if I have to pick her up off the floor we laugh about it, they say laughter is the best medicine, and staying positive does help.
We are currently, looking at getting a wheelchair for her, so we can start to go out, if she is not too bad she can push it, if she is having a bad day, or just can not walk she can sit in it and still enjoy being out.