Brighton woman on living with ME aka Chronic Fatigue Syndrome

[MeSci]

I'm not very impressed with this article, but then it is from "a member of the Sussex & Kent ME Society".

Source: The Sussex Argus
Date: May 11, 2018

URL:
http://www.theargus.co.uk/news/16219467.I___m_living_with_chronic_fatigue_but_I___m_coping/

Brighton woman on living with ME aka Chronic Fatigue Syndrome
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Social worker Catherine Bleach is living with an invisible condition that not many can recognise. The 53-year-old from Brighton was diagnosed four years ago with a life-changing condition, Myalgic Encephalomyelitis (ME), better known as Chronic Fatigue Syndrome. As this is ME Awareness Week, Catherine hopes to inspire other patients to confront the condition bravely. Catherine was working full-time in adult social care until she fell ill. Initially she thought she had flu but when she could not get better, her GP delivered the bad news.

More at link

 

[Trish]

Oh dear. So ME = exhaustion and the advice is be positive and determined and don't give up doing things.
While I sympathise with the woman involved the resulting article is so misleading as to be harmful to pwME.

 

[Dr Carrot]

I wouldn’t say it was that bad. The only two lines that leap out to me are the ones about ‘inner strength’ and ‘not letting ME stop you from doing the things you love’. That’s it.

Everything else seems an on-the-money assessment of someone who is milidly affected by ME but still not living the life that they wanted.

 

[Barry]

I actually find most of it pretty well reflects a lot of how my wife copes, though she would find it hard to hold any sort of job down due to unpredictability of work hours.

This bit ...

Despite the setbacks, Catherine still found inner strength to continue her passion in social work.

... is obviously misleading. I think most folk with ME seem to demonstrate bucket loads of inner strength, but this quote suggests that it's all you need to carry on working. But given how journalists can sometimes really skew reality, this is not too bad, and it does clarify somewhat a bit further on.

And with this quote ...

“Just because you have ME it doesn’t you should stop doing everything you love.”

... my wife also has managed to not stop doing everything she loved. She can still do a fair bit of gardening, and has learned to pace herself there. I was doing some digging for her a while back, and was going to chide her when I saw she was also digging - then realised she has learned to pace herself very neatly at that also ... she uses a small spade, and even with that only takes small half-sized nibbles at a time. My wife can also pursue her craft and sewing interests, albeit subject to pacing.

But my wife also used to love walking a lot, especially out into the countryside. We still walk, but much much less than she would like. She also loved the little gardening business she had, and that had to stop.

But on balance I think the article is not bad. Better with than without.

 

[Woolie]

Yea, its also incredibly arrogant not to recognise that many aren't as lucky as her. Honestly, those who've had the disease and have known other sufferers have no excuse for that sort of ignorance.

Lets hope that she was aware of that, perhaps the piece was edited?

 

[TiredSam]

It's unlikely that the "inner strength" thing is something she said about herself, probably the journalist spicing it up a bit.

“Just because you have ME it doesn’t you should stop doing everything you love.”

This is true for her, and it's true for me and a lot of others, although I could make a list of the things I've had to give up, I'm fortunate to be able to replace them with a couple of things I can do from the sofa.

Yea, its also incredibly arrogant not to recognise that many aren't as lucky as her. Honestly, those who've had the disease and have known other sufferers have no excuse for that sort of ignorance.

Lets hope that she was aware of that, perhaps the piece was edited?

Agree with this, but who knows what else she said, including an acknowledgement that not all are so lucky, that wasn't included? If the journalist / editor decide it's going to be an inspiring uplifting can-do story of hope and triumph over adversity, what can you do?