As you will know my Daughter who is 13 has been diagnosed with ME. We have been living with this chronic illness since December 2015, where she became ill following having Glandular Fever.
May 2017 is ME Awareness month. I will be writing a post each week, and sometimes daily. About this illness, and how it affects the sufferer and family. Unfortunately, ME is one of those illnesses that many professionals do not believe is an illness. Or they do not know how to treat it. Shockingly some of the advice given is damaging to the sufferer.
I will start off with the many levels of ME
As you can see there are a few levels of how ill people are with ME. My Daughter is Severe, where she is bedbound, and has to use a wheelchair when she goes out. Which is only to hospital appointments. She has no life and also now other symptoms. Including problems with her jaw which are so bad she can hardly talk or eat and breathing problems.
There is a lot of speculation out there, that ME sufferers are just tired and need to sleep more. Or have routined bedtimes, or that they are just lazy. This is simply not the case. My Daughter also sufferers 24/7 migraine type headaches. She is on daily medication for this to keep the pain away, brain fog, pains in her legs and feeling so unwell.
This is something we all face on a daily basis. ME is one of those illnesses that medical professionals just do not understand. And there is no magic cure for it.
Like my Daughter, everyone who suffers with ME just can not live a normal life. Before she became ill at 12 years old, she was in year 7 of school. Doing very well in the top classes, she had friends and a great social life. Now she can not attend school or even cope with home tutoring. She is bedbound and just too ill to do anything. She used to love reading but can no longer concentrate due to brain fog. Instead of being a normal stroppy 13 year old who thinks she does not need us, she relies on us every minute of the day.
If we have to go to a hospital appointment, we have to prepare in advance, and on the day make it as stress free as possible, so that she can cope in the best way she can. It always results in payback and she suffers afterwards. Gone are the days of just getting up and going out.
This is the hardest part about this illness, the isolation, her friends have drifted away, I can not blame them they are 13 and living their lives, as any 13 year olds should. But as a parent seeing your child lying there daily feeling abandoned is one of the hardest things to cope with. She does have internet friends who she speaks to when up to it, but it is not the same as having someone here spending a bit of time with her, this is where my heart breaks for her.
I will be writing posts throughout May to give a glimpse of our lives and also try to show how this illness affects the sufferer, and how it is not just being lazy or wanting to spend all day in bed.