Emotions of carers who care for people with ME/CFS

June 24, 2021

Knowing how to care

I wish I knew how to care, what he wants and needs. It’s like being a very bad mind reader at times.

Over the years I have got better….. I hope. But boy oh boy do I still get it wrong at times!

Yesterday I boiled his vegetables for a minute too long. A couple of weeks ago I bought the wrong yoghurt.  I ask him to do something when he’s only recently sat down even though I know he can’t stand up again for quite some time. When he has a bad flare he needs me to fetch and carry his meals, flannel, meds and so on, but of course I get my timing wrong, I fuss too much…..or not enough.

Does the person you care for get frustrated with you? Any advice on how I can deal better with my feelings when I walk away feeling unappreciated?

Feeling guilty

One of my big issues is guilt. The guilt that I didn’t protect my son from this horrible condition of ME/CFS.

If I’d known then what I know now, would the outcome have been different?

I encouraged him to follow the Paediatrician’s advice of increasing his daily activity each week until he became totally immobile and barely moved for eighteen months.

Some years later I told an Occupational Therapist that John would not do his ‘homework’ and engage in activities to raise his heartbeat. But still I took that stance because he had a diagnosis of PoTS and not because I understood the dangers of exercise.

I feel guilty about one day leaving him to manage on his own, and I feel guilty that he has ME/CFS. That it is in some way my fault.

My local Carers organisation offers a ‘Managing Guilt’ workshop. I wonder if I should attend?

Does anyone else feel guilty?

It’s made me a better person

Caring has changed me.  I think I’m a nicer person now.

I wish all my fellow carers love and strength in the wonderful role they play.

We are carers, not carer workers, we save the country billions of pounds every year, and we make a valuable difference to the people we care for.

Keep sharing. Keep supporting. Keep Caring visible.


Carer support is available from:

MEA Carers Resources

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