Pain of illness that wipes out energy

[Ember]

http://www.yorkshireeveningpost.co....in-of-illness-that-wipes-out-energy-1-5664035

SHE was once an active, high-flying businesswoman. But Myalgic Encephalomyelitis (ME) has robbed Edwina Fearnley of the life she once lived.

Now the 55-year-old doesn’t even have the energy to get dressed most days, and barely leaves her home in Alwoodley, Leeds.

It’s because of a condition which sufferers say is still downplayed and misunderstood.

“It’s not widely enough recognised for people to know what it is,” she said.

“They think ‘pull yourself together’.” [...]

Incorrect medical advice caused her to become much worse.

“The first doctor I saw told me there was no such thing as ME and that I had to push myself,” she said.

“He told me to walk round the block every day.

“I gradually became worse until I became bed-bound. The curtains remained closed and the lights off. My family had to whisper to me. I needed help to do everything.”

She went on to remain bed-bound for around two years....

Now, though not always confined to bed, the condition has restricted Edwina’s life severely.

“I cannot walk more than 20 yards,” she said.

“With the help of aids like a stairlift, I manage to live independently, although I am housebound and the only trips out are to the doctors and dentist.”

Though initially misdiagnosed with depression, later she did become depressed and needed hospital care.

“I became very depressed at one stage, and was hospitalised with depression, but the depression came from being ill not vice versa,” she said.

“I have learned to live with my limitations, and whilst I’m not ecstatic with life, I’m certainly not depressed.”

Now, she very carefully paces herself, scheduling limited activity periods each day which she currently is using to study for a degree course with the Open University....

“I don’t even get dressed because that in itself takes up a lot of energy which at the moment I don’t want to take away from my course,” she said.

“I am finding it very difficult to keep up but am determined by hook or by crook to get there.

“My tutor is also the disability officer, so is fully supportive.”

Doing too much can leave her suffering for days.

“If you overdo the activity, you get payback fatigue,” she said.

“If I go to the doctors or the dentist, I am always bed-bound afterwards.”

Edwina has spoken out about her experiences to help others understand more about the condition, especially as May is ME Awareness Month....

 

[ukxmrv]

Pity about the plug for Action for ME at the end. They are part of the problem patients face in the UK.

 

[*GG*]

Pity about the plug for Action for ME at the end. They are part of the problem patients face in the UK.

What do you think of this video?:

GG

 

[ukxmrv]

I think that looks like Nicky Strong who is a Trustee of the MEA.

I'm aware of the protest (if that is what you are asking) http://me-alivingdeath.org.uk/

It's not organised by AFME. They just seem to be jumping on to someone else's bandwagon. Every now and then they produce something good and then go back to be terrible the other 99% of the time. Look at their support of the PACE trial, their involvement with the occupational health guideline etc.

(sorry computer won't let me run videos at the moment, running too slow)

 

[Misfit Toy]

ggingues, I like the speaker but to me, the lying down seems a little too much. If I walked by a rally where everyone was lying down, I would think these people that were lying on a dirty street were crazy.