As regular readers know, my Daughter C is 13 years old and has been living with ME/CFS since new years eve 2015, in those few moments her life changed forever. I thought as it has been a while since my last full update (apart from my weekly updates where I always mention how C is), it is time to fully update on how we are getting on and just how much all our lives are affected.
I have written about what ME/CFS is, and if you are unsure you can find the post here. It is an illness that can change a life, just like the click of the fingers. C used to be a happy lively little girl, always busy and on the go and always up to something. She started year 7 of Secondary school and had settled in very well, and enjoying the bit of extra freedom we allowed her, of taking the bus to and from school, going into town shopping with friends, the normal things children of that age does.
Then it all changed, and she became ill, it is very scary at first as you have a child who has various things wrong, and very scary when they collapse in your arms, or shout you as they have fallen on the floor and can not get up. This is what goes on behind closed doors up and down the country.
Not only as a parent, we have to deal with helping our child with this chronic illness, we also have the extra battles with the medical profession. Talk to any parent and they will all tell you the same thing, about the constant battles with the GP or pediatricians, who refuse to believe that this is a real illness. Day in and day out we are trying to do our best for our child, battle with professionals, and then the added battle of education. As you know on the education side I have been lucky and have been supported.
As a parent watching our childs life turn upside down, we see them laying in their beds too tired to get up, or their mobility is poor, we watch as they put a brave face on when their friends are out doing things, children of that age should be doing. You can see the pain in their eyes. You also face so called friends, some have blatantly said to me they don’t care, or they do not understand, this has honestly been a huge lesson in who my real friends are. Those that have supported me, those that if they have not heard from me, will ring or text to see how things are, they are the ones I cherish.
When your child becomes ill, you suddenly feel very alone and scared, you are scared for the future. In one of my down moments I was on Facebook and found a great group for parents of children with ME/CFS, this has been a lifeline. Everyone feels the same, some just starting their journey others a years down the line. You can go on the group and share anything, get advice, read stories of how a child is suffering or the ones I love, how one is having a recovery and has been out or having a bit of a life. Sadly it rarely stays but it does give me glimmers of what could happen in the future.
As a parent my life has had to change totally, I have to be here for her 24/7, for when she is bedbound (which is most of the time at the moment) to get her drinks and meals, to sort her medication which she is on daily. To sit and chat with her, to keep her going and to dry her tears when she is down. I am lucky that my parents are a huge support and they insist on me having time out and having a night out or weekend away, and even supported us with a little holiday we are going on next month. As in my Mums words, I need the break and it will not help C to run myself down. I honestly could not do this without their support.
If you know someone who has a chronic illness, or any illness or are a carer for someone, just sent them a message once in a while just to ask them how they are, it really will make their day.
I am currently looking for other parents, who would like to share their experiences with my readers, either in way of one post sharing everyones stories, or a guest post. If you feel you would like to share your story, can be about any illness not just ME/CFS. Please comment below and I will get in contact with you.