'It's like being switched off'
Chronic fatigue dominates the lives of people with multiple sclerosis - and other long-term conditions. Here Alison Potts, who has had MS for 20 years, tells how it affects her life.
Earlier this month MS in Focus magazine published the results of a global survey on MS fatigue.
"My family and friends just think I'm tired and lazy," one person said - and another: "Fatigue prevents me from being the wife and mother I want to be."
Chronic fatigue is the most common symptom of MS, the hardest to treat and the most misunderstood.
In the MS Focus poll , 89% of the 100,000 people from 101 countries who were surveyed said fatigue had a high impact on their life.
But more than half felt those around them do not accept its effects.
Unless you have endured it yourself, there isn't anyone who can imagine what this experience is like, yet for we who live our lives with this illness, other peoples' understanding is crucial and other peoples' misunderstandings add further damage to an already devastating condition.
I have lived with MS fatigue for more than 20 years.
I sometimes feel like I have spent half my adult life in a cave.
I woke up one morning with the equivalent of a blanket on my head which I stumbled around with for years and which was finally explained with my diagnosis of MS.
Even I didn't understand why I found the simplest activities so hard. Even I questioned my own sanity. So it's hardly surprising that it's so bewildering for those looking on.
Part of the problem is that people equate fatigue with ordinary tiredness - which it is nothing like.
Even the word "fatigue" really just doesn't cut it.
It sounds rather soft or quaint, like something that could be fixed with a good lie down or a nice cup of tea.
We are easily misunderstood because we look fine and we are often perfectionists by nature so we can get a lot done in spite of what we are dealing with.
'Can you drop everything?'
In fact, chronic fatigue (in MS and other illnesses) is nothing like every day tiredness.
Fatigue is a debilitating state of physical and mental exhaustion that comes crashing down suddenly and without warning attacking - among other things - eyesight, balance, muscular strength, and threatening everything in one's immediate focus.
"I am lifeless. At times it is like someone has switched me off," says someone in the survey.
In an acute episode I have to cancel many or most activities. I have to do as little as possible - which goes against my nature and I hate it - but I don't have any choice.
Conversely when an episode is over, I am in danger of bouncing around like tigger, playing catch-up and trying to get anything and every done while I feel well enough.
Fatigue doesn't announce itself in advance. It can happen at any time, anywhere.
It can bring anxiety - "What will happen if I don't get this done?", and panic, even terror - "Will I get home in time before the complete collapse? Am I safe to drive? What if I am not?"
It brings with it this terrifying conundrum. Can you drop everything at once, not knowing for how long?
What will happen to your life if you drop everything at once? What will happen to your life if you don't?
We often feel under pressure to do things we know will be bad for us.
My friend and fellow chronic fatigue sufferer Sarah reports one experience where she felt under pressure to comply with others' plans when she felt unable to.
"For my birthday in 2005 friends insisted meeting me for a BBQ. I resisted as I knew I had been overdoing it. They would not take no for an answer."
It had such an effect on her that she says: "It took me three months to recover from that event. It was like falling sick all over again."
And she adds: "It's unhelpful of friends or family to beg me to come or to modify the nature of my attendance, or worse still, be hurt. Don't they realise it breaks my heart to cancel?
"It's not like I wanted to spend my entire 30s missing out on shared, fun times. Don't make it any harder than it is. This is simply what I have to do."
These days everyone is too busy, overloaded, driven by tyrannical deadlines.
"I know there are probably people who look at me and think, how is my life any different from theirs?
"But In my case I have to do all this while accommodating an illness which presses the stop button indiscriminately.
Those of us with chronic fatigue have to say "no" a lot.
As the survey states: "People with fatigue need time to rest, but most of all they need understanding from others."