Today is ME Awareness Day 2021, and as many of you know this is a journey we have been on since that fateful night at 11.45pm on 31st December 2015.
How our story starts
C had just left Primary School, and was excited for the next chapter of her life heading to Secondary School. In the August my parents took her on a Disney Cruise. She had a great time, but came home ill. She had a bad throat and temperature and just unwell. We thought it was just a bug.
She recovered, or so we thought and started Secondary School in September. She loved it, made new friends as well as old ones from her old school. She loved getting the bus to and from school, but at times she would text or ring me to ask if I could pick her up as she was too tired to get the bus.
We thought, it was just her getting used to Secondary School, she would also fall asleep some afternoons she came in, or at the weekend if she was at home. It turns out she had Glandular Fever.
What is ME?
For the past few years I have written posts daily highlighting ME, what it is and how it affects those suffering with the chronic illness. I am going to share the posts below to share about the other things you never realise
- How the person suffers
- The parents/carers side
- Medical support
1. Our story
This is our story in full of how ME came into our lives, how we never knew about it before and why.
2. Medical Support
Sadly, ME was not well known, you may have heard about it but be unsure what it actually is. Long Covid is pretty much the same as ME. Hopefully with this in mind more support will go into looking at helping those who are suffering.
We have had some pretty awful medical support, I have had C in tears from a consultant, where she buried her head into me and cried and he still went on. The arguments I have had with our GP who refused to believe ME was an illness, especially in children, the refusal of prescribing medication our consultants had prescribed. It was one battle after the other.
3. The Parents Side
As a parent you want your child to be happy and healthy, both myself and my husband have had to watch our daughter suffer. We have sat and cuddled her when she has broken her heart to us. We have watched the sadness as friends have drifted away as their lives go on. Felt useless as we have not been able to take the pain away.
We have become protective of throw away comments friends and family make, and go into defence mode and the heartache attached with watching life turn out totally different for her.
4. What is ME
ME is not a complex illness but one people should know about, as like myself and thousands of others it could hit you or someone you know at anytime.
Our life now
C also has IIH which in terms means she has ongoing migraines she literally has a migraine headache 24/7 so we are also under a neurologist. We feel as well as her ME consultant that if we can get this sorted, we may move forward into her becoming a lot better with her ME.
You will have seen my recent posts about education if you missed them you can find them here
We are currently waiting on her EHCP to come through, and apply for a course. There never seems any urgency and as each day goes by, applying for a course is becoming harder.
I hope I have given some insight into ME, and hope you never have to experience it yourself. If you are going through this, I am always here to talk to whether it is asking questions, or being angry and wanting to scream and cry. There are also some great supportive groups on Facebook that have been amazing support to us.