The ups and downs of living with a teen

ME Awareness Month – Week 2

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 and 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, then be happy for them, because this is a major accomplishment for them, and 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.

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  1. I echo all you have said . It’s heart breaking to see and yet it becomes a new normal and not a nice one. Life seems to pass by and not many people really understand how truly debilitating ME is. Keep raising awareness and send my love to C xx

    1. It is heartbreaking to see, and I know you see this daily as well with R, you have really been such a huge support to us, I am fortunate to be able to spread awareness a little further than my circle of friends and it has helped 🙂 x

  2. Really thought provoking. My sister was diagnosed with ME when she was younger, but I think it was only because the doctors didn’t really know what was wrong with her. She didn’t have any of the tiredness symptoms.

    1. Thank you, it is important to raise awareness, like too many others ME is a condition that a lot of people do not know about or understand x

  3. I suffer with fatigue and it’s awful when I crash. It’s normally after I have been really stressed or ill that it hits me. I remember last year going through physio for my hands and getting a flu type virus and then having awful symptoms. I was told it would take 6 months to get better and it actually took 3. People just don’t want to open their minds to your suffering. Fatigue being something you can’t physically see. It’s like if you had 2 broken arms you would get more sympathy from people. I love the awareness of this post thank you for sharing X

    1. Thank you, and awareness is so important, as you say you can not physically see how the person is suffering, I am so glad to hear you recovered in 3 months, and that you understand just how doing something can cause you to crash, I hope things carry on improving for you x

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