As you will all be aware by now, May is ME Awareness month, and for my Daughter and the 1000’s of other sufferers, I am raising awareness of this horrible illness, and hopefully trying to show just how ME takes hold and causes a sufferer to feel.
If I had a £1 for every time, I have heard could C be depressed, or I think she is depressed, I would be very rich. Yes it is obvious that they do get down, but depression is not the reason.
A person with ME, has to prepare for any form of activity, and rest up so they have enough energy to get through a trip out. There is always pay back the next day or two. When someone with ME is out, it is often hard for others to realise just how much effort they are making and how much they will suffer after.
This is one thing that is very hard to hear, I know everyone is trying to be positive and helpful, but hearing someone at work has this or had this, they were fine after a few weeks or, they can still lead a normal life, or she will grow out of it. I just smile now, as there is such a huge spectrum of just how someone suffers, some are bedbound, others are able to do most things and have little payback, there is no cure, there is no they will get better, they will grow out of it. It is just down to how their bodies can cope and just how bad payback comes.
We all pray for the good days, they are very few here with C, but if she says she would like to do something today, I will always say yes, even if it is a visit to the garden centre for a coffee. I know she will suffer but we both miss our little outings we used to have.
I have in the past heard C and her friend chat or one of her brothers, who say it is not fair and I wish I could just stay in bed, or I must have ME as I am tired. I know they mean no malice and I know they are joking. But it is not a joke, and for someone who suffers with ME, it is upsetting as they would give anything to feel ‘normal’ again.
This is one of the things I find the hardest to cope with, the isolation, my heart breaks daily due to this.
If you could ever eaves drop into my house and conversations, when one of my boys was living here, you would often hear me say the same thing over and over. He would be joking but jokes wear thin. Just try to remember if you know someone who suffers with ME, just remember they do not choose this life, they would happily swap anytime to have a normal life back.
This weeks post, is more about how a sufferer feels and copes with the illness, and how flippant remarks can cause pain and upset. The occasional comment is fine but not all the time.
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