May is ME Awareness month, I posted week 1 last week which you can read here, and I have also posted our story of living with ME and how it affects us all as a family, which you can read here. Today I am writing my second post on ME to share awareness and hopefully get a little more awareness raised.
This is so true, a common theme that seems to come out is that if someone suffers with ME. And does have the energy to go out and be smiling, that people think they are not ill. What people do not see is the suffering after which usually consists of pain, and extreme fatigue.
It is not just physical activity that causes a crash, it is mental activity as well.
As a parent of a child with ME, I often hear she will grow out of it, or she will be better in 6 months. The devastating truth is, we do not know. Yes I keep positive that she will recover. But we do not know if this is going to be her life forever.
My Daughter often says this, no amount of rest or sleep will make that tiredness go away. I have heard it described as having been out and not slept and the tiredness you feel is the same for an ME sufferer but 10+ times worse.
There have been a lot of posts on the ME community of sufferers in a crash. And also out and about looking like anyone else. One of the most upsetting things is the disbelief that people do not think they are ill. That they are just making it up or are lazy. Very early on I was given a great piece of advise that we will get comments like this. But she needs her parents to believe her. If you know someone who has ME please believe in what they are saying.
How many times, have we been told this, unfortunately it has the totally opposite effect and the sufferer will go into a crash, which is when they just can not do anything due to pain and extreme fatigue.
As already said, if you know someone who has ME, and you manage to catch up with them, see them out. Please be happy for them, because this is a major accomplishment for them. The sad probability that later that day or the next day they will be bedbound.
I hope my posts give a bit more understanding on ME. Sadly it is an illness that even professionals do not agree on. One where as a patient (or carer) you have to fight and battle down brick walls time and time again.
Please feel free to comment,share or ask questions.