At 11.45pm on 31st December it was the 5 year anniversary of C’s illness. The moment when all our lives changed and she no longer was able to lead a normal life. But that of a child with a chronic illness suffering daily.
Each year I write a post marking the anniversary, not as a reminder but also for those who are following our journey, or just facing life with this illness. You can find last years post here.
We now know why, but at the time we had no idea what we were facing. We were at a friend’s house having a New Years Eve party. C came over to me said she did not feel too well and her legs hurt, and then she collapsed in my arms. Luckily she was near a sofa where I managed to move her too and sit with her.
We did not know then, just what we were about to face.
At the start of this, we had heard of ME, but had no real idea what it was and how it affected sufferers. One thing I do know is that everyone suffers differently.
I have been very lucky with her school, who have worked with us and not against us. The sad part is that since her illness began she has barely been in school and has been bedbound for most of it.
The medical profession her Dr’s are a different story, the battles we have had, being told to go to A&E and sitting for over 7 hours before being sent home, the times they have had to google her illness as they had no idea what it was. The times I have been told she is putting it on as children do not get this illness. The list is endless I could go on and on.
This year we have started seeing a consultant privately, now she is 16 we are able to see him. Who we are lucky is in our area, as I know people travels from all over the country to see him. We have seen him before but this was before he gave up NHS to do more research into ME.
A Special Birthday
This year C celebrated her 16th birthday, but sadly as she has not been in school, she has lost contact with friends. So there was no party, no going out with friends like a normal well 16-year-old should do.
We wanted to do something special for her, to make it a happy memory and not see the sadness in her eyes that it is just a normal day and just how alone she is.
We decided to take her on a mini cruise, this way she could rest up as much as she wanted. It was a total surprise and her face said it all. She loved the cruise (and our first time away as a family since her illness), which is what we have al missed.
Things have been going a little better, C has been managing tuition 3 x 1 hour sessions a week at home, before moving into school. It was lovely seeing her start to get a bit of routine going. When another crash came.
With this she has developed bad stomach pains, we initially thought it was her appendix but after seeing a Dr was told no, but then this same Dr wanted to see her jump (this is the child who shakily walked into the surgery), after me explaining about her ME. She told me she would arrange an ultra sound scan for her, which we are still waiting on. I rang chasing and was told it would be at least 6 weeks before we heard anything, so I rang our surgery again and another request was put in escalating it.
We ended up at out or hours the Sunday before christmas as she was in so much pain. This time told it could be kidney stone and see what the scan says
I will of course keep you updated on what happens.
For those of you starting your journey with a chronic illness, I am always available. There are some amazing groups out there, and other amazing parents who are a mind of information and support.