Regular readers will know that my Daughter C has been unwell since Christmas 2015, in March 2016 C was diagnosed with CFS/ME, you can read our first post here, where I talked about how she became ill and our emotional journey to get a diagnosis.
Last January I wrote a post updating on a year of living with ME, which you can find here. although I update monthly on how C is getting on, it is now that time to write my next post 2 years on.
2 Years On
So here we are, 2 years on and still this horrible illness is taking hold. In some ways she is a lot worse than when we first started on this journey.
C is now 14 years old and should be enjoying life as a teen. She should be going out with her friends, shopping and talking about make up and everything else teen girls talk about. Instead she is 99% of the time isolated at home too ill or in too much pain to do anything.
She should be having the teenage attitude. Arguing with me constantly and everything I say or do winds her up. Instead she clings to me and needs me so much,
She should be able to wash her hair and shower whenever she wants. Instead we have to build up to it like a military operation. I have to wash her hair as it is too tiring for her.
She should be going to school daily and choosing her options for the coming years. Instead she has 2 tuition periods a week with a tutor, but can hardly manage these.
Last July, we had an appointment with a great Consultant who actually understands ME. And who everyone has been trying to see. Luckily for us he is in our Trust and local. I know a lot of people who have travelled hundreds of miles to see him. He actually talked to C and he listened to her. His diagnosis was Severe ME and Fibromyalgia along with joint hypermobility. Even though her diagnosis had changed it felt like a weight had been lifted. As finally we had someone who understood. Which if you suffer or know someone who suffers you will know that this is rare.
As a parent, my heart breaks watching C suffer, the slightest thing can tire her out, her legs can give way, this week she has collapsed a few times, and she is having her migraine type headaches getting worse, so it will be another battle with our GP again to ask for her medication to be increased.
Another thing that is hard, is the looks from strangers when we are out, if I park up in a disabled bay I get looks, if C is in her wheelchair we get looks, this is when protective Mum comes out and I give that look, because unless you know the ME look (dark eyes) you will think she was fine.
If you are reading this and would like to talk privately, or know someone who is also going through this, I am always happy to talk to you. I have made some great friends through this horrible illness who have been a great support and who have made me realise I am not alone.